Psycho-Oncology

Psycho-
Oncology
THIRD EDITION
Edited by
Jimmie C.Holland,MD
William S.Breitbart,MD
Phyllis N.Butow, PhD,MPH
Paul B.Jacobsen,PhD
Matthew J.Loscalzo,MSW
Ruth McCorkle, PhD, RN,FAAN

1
1
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Psycho-oncology (Holland)
Psycho-oncology / edited by Jimmie C. Holland [and 5 others].Third edition.
p. ; cm.
Includes bibliographical references and index.
ISBN 9780199363315 (alk. paper)
I. Holland, Jimmie C., editor. II. Title.
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 Preface
To have written the Preface for the first edition of the Handbook
of Psycho-Oncology in 1989 was a special privilege. Before the
Handbook, research findings in psycho-oncology were published
in journals of several different disciplines. There was no single
archive. So Julia Rowland and Iedited the Handbook as the first
effort to collect in one place the fields knowledge. Given the new-
ness of the field, it seemed presumptuous to call it a textbook.
A decade later, however, knowledge in the field of
psycho-oncology had burgeoned. The second serious review
of the fields knowledge suggested that we had moved beyond
a handbook. In 1998, Oxford University Press published the
multi-authored textbook Psycho-Oncology. With a board of six
editors, the second edition followed in 2010. Its size, almost seven
hundred pages, reflected the fields exponential growth. We pres-
ent now the third edition of Psycho-Oncology, only four years after
the second, in order to keep up with the vast growth in knowledge.
It is an honor once again to write the Preface. Iam one of the few
living today who have seen the evolution of psycho-oncology from
its birth, through its adolescence, and now into its full maturity.
This gives me an unusually broad perspective on the challenges
and successes. The first opportunity to move the field forward
significantly occurred in the 1970s, when patients began to be
given their cancer diagnoses and we could study their emotional
responses to their illness. The fact that patients began to sur-
vive their cancerand talk about itbegan to reduce the stigma
attached to cancer. In this milieu, psycho-oncology was born, and
research into the psychosocial aspects of cancer became possible.
However, the larger scientific community did not accept that
patient-reported subjective symptoms could be valid. Even
reports of pain were recorded in research studies from the physi-
cians observation, not the patients report. It became clear that
we had to develop appropriate assessment tools for measuring
patients subjective symptoms in order to conduct clinical trials
of our interventions. The 1980s and 1990s thus were devoted to
development of valid assessment instruments and conducting
studies and clinical trials of psychosocial and psychopharmaco-
logic interventions.
By 2000, an evidence base had developed, and the National
Comprehensive Cancer Network (NCCN) used it and expert
consensus to produce the first Guidelines for Management of
Distress in Cancer.1 The Institute of Medicine (IOM) of the
National Academies of Science, after a yearlong review, published
in 2008 the first policy statement regarding psycho-oncology.2
The evidence base for psycho-oncology, the IOM reported, war-
rants that to achieve quality cancer care, routine oncology prac-
tice must integrate psycho-oncology. This was further reinforced
by the American College of Surgeons Commission on Cancer. 3
The Commission on Cancer now requires accredited cancer cen-
ters to have a psychosocial distress screening program in placea
program by which to identify distressed patients, triage them to
appropriate help, and follow up with them (see the table of histori-
cal events in the Introduction).
These strides notwithstanding, challenges remain. One
such challenge is how to disseminate the evidence base for
psycho-oncology and change clinical practice at the bedside and
in the clinic. This is a formidable task. Our future endeavors will
be aided by dissemination and implementation science, which
now is recognized as a field in its own right.4 However, stigma
about mental illness persists in our culture. This stigma adversely
impacts the care of patients with cancer and their families. Abig
step forward toward the goal of implementation has been achieved
by the explosion of attention to screening for distress as a part of
routine care, like taking vital signs. It normalizes the inclusion of
questions about the whole person and eliminates the discomfort
that doctors and patients feel about asking questions that sound
mental.
Another challenge is the crisis that bears down upon the can-
cer care system. Described by the IOM in a 2013 report, the crisis
comes from different directions. 5 The increasing complexity of
cancer care, a growing demand, and a shrinking workforce have
produced the perfect storm. Amid the increasing complexity of
cancer care, this third edition of Psycho-Oncology underscores the
importance of different professions working together as a team.
The field of psycho-oncology is interdisciplinary. Through the
interdependent work of an interdisciplinary team, those work-
ing in psycho-oncology can advocate for patients and family as
they navigate the complex cancer care system. They can accom-
pany them on their personal journeys of cancer care. However,
it is the responsibility of psycho-oncology professionals to notice
as well the growing demand and the shrinking workforce. Just as
we advocate for patients and families, we must recruit new profes-
sionals into both clinical and research areas of psycho-oncology.
vi preface
This volume as a whole shows how exciting the field is and the key
role that psycho-oncology can play in contributing to the solution
of the impending crisis in cancer care delivery.
The third edition has some new areas: several new
evidence-based psychotherapies applicable for different stages of
illness are described. The sections devoted to survivorship have
lengthened as we have increasingly studied survivors at all ages
and better understand the issues and appropriate interventions.
In this context, lifestyle has taken on new dimensions in terms of
the prevention of cancer in healthy individuals, and the lifestyle
of survivors as a means of preventing relapse of cancer. Diet and
exercise have emerged as important in cancer prevention research.
They were not mentioned in the 1989 Handbook.
This is a fitting time to look back at the Foreword in the
Handbook of Psycho-Oncology from 1989, which was written
by Lewis Thomas, physician and philosopher, and president of
Memorial Sloan-Kettering Cancer Center at the time. He was an
enthusiastic supporter of our work, and his observations are just
as freshtoday:
Within less than a decade, the term psycho-oncology, viewed with
deep suspicion by most oncologists, has at last emerged as a respect-
able field for both application and research. In my own view, having
passed through both stages as skeptical clinician and administrator,
the appearance on the scene of psychiatrists and experimental psy-
chologists has so vastly improved the lot of cancer patients as to make
these new professionals indispensable. The clinical oncologists of
all stripes have, for too long, overlooked or ignored the psychologi-
cal factors that may, for all we know at present, play a surprisingly
large role in individual susceptibility to neoplasia. They are certainly
influential in affecting the course of treatment, the adaptation to the
illness, and hence, in some ways, not all of which are yet understood,
affect the outcome of treatment. It is, therefore, a great satisfaction
to see this new field of proper science handled, as in this book, with
such care for the available facts of the matter and, at the same time,
with such high, but restrained hopes for the scientific future.
Twenty-five years later, the confidence that Dr.Thomas had in the
future of psycho-oncology is being affirmed by this, the third edi-
tion of Psycho-Oncology.
Jimmie C.Holland
May2014
NewYork, NewYork
REFERENCES
1. National Comprehensive Cancer Network. NCCN practice guidelines
for the management of psychosocial distress. Oncology (Williston
Park). 1999;13(5A):113147.
2. IOM (Institute of Medicine). Adler NE, Page AEK, eds. Cancer
Care for the Whole Patient:Meeting Psychosocial Health Needs.
Washington, DC:The National Academies Press;2008.
3. American College of Surgeons Commission on Cancer. Cancer
Program Standards 2012, Version 1.1:Ensuring Patient-Centered
Care.2012.
4. Brownson RC, Colditz GA, Proctor EK, eds. Dissemination and
Implementation Research in Health:Translating Science Into Practice.
NewYork:Oxford University Press;2012.
5. IOM (Institute of Medicine). Delivering High-Quality Cancer
Care:Charting ANew Course for a System in Crisis. Washington,
DC:National Academies Press;2013.
 Contents
Contributors
Introduction:History of Psycho-Oncology
Jimmie C.Holland and Talia WeissWiesel
SECTION I
Behavioral and Psychological
Factors in Cancer Risk
1 Tobacco Use and Cessation
Thomas H.Brandon, Marina Unrod, and
Vani N.Simmons
2 Diet and Cancer
Marian L.Fitzgibbon, Melinda R.Stolley,
and Lisa Tussing-Humphreys
3 Physical Activity and Cancer
Christine M.Friedenreich, Heather
K.Neilson, and Darren M.R. Brenner
4 Sun Exposure and Cancer Risk
Anne E.Cust, Afaf Girgis, and
Bruce K.Armstrong
5 A Psychosocial Perspective on
Socioeconomic Disparities in Cancer
Sara Fernandes-Taylor and Joan R.Bloom
6 Psychosocial Factors
Christoffer Johansen
SEC TION II
Screening for Cancer in Normal
andAt-Risk Populations
7 Colorectal Cancer Screening
Sally W.Vernon, Caitlin C.Murphy,
and Amy McQueen
xiii 8 Cervical Cancer Screening 49
xxv
Suzanne M.Miller, Siu-kuen Azor Hui,
John Scarpato, and MinsunLee
9 Breast Cancer Screening 58
Rory C.Weier, Sarah A.Reisinger,
and Electra D.Paskett
10 Prostate Cancer Screening 64
Ronald E.Myers, Amy Leader, Melissa DiCarlo,
3 Charnita Zeigler-Johnson, and Edouard Trabulsi
SECTION III
8 Screening and Testing for Genetic
Susceptibility to Cancer
11 Psychosocial Issues in Genetic Testing
15
for Breast/Ovarian Cancer 71
Mary Jane Esplen and Eveline M.A. Bleiker
22
12 Psychosocial Issues in Genetic Testing for
Hereditary Colorectal Cancer 77
Andrea Farkas Patenaude and Susan K.Peterson
28
SEC TION IV
Psychological Issues Related to
35
Site of Cancer
13 Central Nervous System Tumors 87
Alan D.Valentine
14 Head and Neck Cancer 92
Gerald M.Devins, Kristen J.Otto,
Jonathan C.Irish, and GaryRodin
43
15 Gastrointestinal and Hepatobiliary
Cancers 98
Virginia Sun and Robert S.Krouse
viii contents

16 Lung Cancer 105 31 Weight and Appetite Loss in Cancer 239

Mary E.Cooley, Hermine Poghosyan, Neil MacDonald
and LindaSarna
17 Genitourinary Malignancies 114 SEC TION VI
Andrew J.Roth and Alejandro Gonzlez-Restrepo Palliative and Terminal Care
18 Gynecologic Cancers 121
32 Hospice and Home Care 249
Heidi S. Donovan and Teresa L.Hagan
Stephen R.Connor
19 Skin Neoplasms and Malignant Melanoma 128
33 Canadian Virtual Hospice:ATemplate
Peter C.Trask
for Online Communication and Support 253
20 Breast Cancer 134 Harvey Max Chochinov, Mike Harlos, Shelly Cory,
TishKnobf Glen Horst, Fred Nelson, and Brenda Hearson
21 Sarcoma 139 34 Training of Psychologists and Psychiatrists in
Michelle R.Brown, James Klosky, and Sheri L.Spunt Palliative Care 259
E. Alessandra Strada and William S.Breitbart
22 Hematopoietic Dyscrasias and Stem Cell
Transplantation 144
Jesse R.Fann and MitchLevy SECTION VII
23 HIV Infection and AIDS-Associated Psychiatric Disorders
Neoplasms 155 35 Psychiatric Emergencies 267
Joanna S.Dognin and Peter A.Selwyn Andrew J. Roth and Talia R. Weiss Wiesel
24 Tumor of Unknown Primary Site 162 36 Adjustment Disorders 274
Anna M.Varghese and Leonard B.Saltz Madeline Li, Sarah Hales, and GaryRodin
37 Depressive Disorders 281
SECTION V Peter Fitzgerald, Kimberley Miller,
Management of Specific Physical Madeline Li, and GaryRodin
Symptoms 38 Suicide 289

25 Cancer-Related Pain 171 Hayley Pessin and William S.Breitbart

Roma S.Tickoo, R. Garrett Key, and 39 Anxiety Disorders 296
William S.Breitbart Joseph A.Greer, James MacDonald,
26 Nausea and Vomiting 199 and Lara Traeger
Brian Dietrich, Kavitha Ramchandran, 40 Delirium 304
and Jamie H.VonRoenn Yesne Alici, Alan T.Bates, and William S.Breitbart
27 Fatigue 209 41 Substance Use Disorders 317
Yesne Alici, Julienne E.Bower, and Kenneth L.Kirsh, Adam Rzetelny, and
William S.Breitbart Steven D.Passik
28 Sexual Problems After Cancer 220 42 Post-traumatic Stress Disorder Associated
Andrew J.Roth, Jeanne Carter, Barbara withCancer Diagnosis and Treatment 323
Seidel, and Christian J.Nelson Matthew N.Doolittle and Katherine N.DuHamel
29 Neuropsychological Impact of Cancer 43 Somatic Symptom and Related Disorders,
and Cancer Treatments 225 Factitious Illness, and Malingering in the
Tim A.Ahles, Charissa Andreotti, and Oncology Setting 339
Denise D.Correa Ted Avi Gerstenblith, Lucy E.Hutner,
30 Sleep and Cancer 231 FeliciaA.Smith, and Theodore A.Stern
Amy E.Lowery
 contents ix

44 Cancer Care for Patients with Schizophrenia 345 55 Supportive Psychotherapy and Cancer:
Linda Ganzini and Anne F.Gross ANew Model for an Old Therapy 443
Marguerite S.Lederberg, Mindy
45 Difficult Personality Traits and Disorders in
Greenstein, and Jimmie C.Holland
Oncology 356
John D.Wynn 56 Cognitive and Behavioral Interventions 449
Barbara L.Andersen, Caroline
S.Dorfman, and Neha Godiwala
SEC TION VIII
57 Cognitive Therapy 458
Screening and Assessment in
Stirling Moorey and MaggieWatson
Psychosocial Oncology
58 Self-Management Support 464
46 Screening and Assessment for Dena Schulman-Green, Edward
Unmet Needs 369 H.Wagner, and Ruth McCorkle
Amy Waller, Allison Boyes, MarikoCarey,
and Rob Sanson-Fisher 59 Building Problem-Solving Skills 470
Arthur M.Nezu, Christine Maguth
47 Assessment and Screening for Anxiety and Nezu, and Kristin E.Salber
Depression 378
Paul B.Jacobsen and Kristine A.Donovan 60 Meaning-Centered Psychotherapy 475
Wendy G.Lichtenthal, Allison J.Applebaum,
48 Screening and Assessment for Distress 384 and William S.Breitbart
Alex J.Mitchell
61 Dignity in the Terminally Ill:
49 Screening and Assessment for Delirium Empirical Findings and Clinical
andDementia 396 Applications 480
Reena Jaiswal, Yesne Alici, and William S.Breitbart Harvey Max Chochinov and
50 Screening and Assessment for Maia S.Kredentser
Cognitive Problems 405 62 Managing Cancer and Living Meaningfully
James C.Root, Elizabeth Ryan, and Tim A.Ahles (CALM) Therapy 487

51 Cross-Cultural Considerations in Sarah Hales, Christopher Lo, and GaryRodin

Screening and Assessment 411 63 Mindfulness Meditation and Yoga
Luigi Grassi, Maria Giulia Nanni, for Cancer Patients 492
KristineA.Donovan, and Paul B.Jacobsen Linda E.Carlson
64 Art and Music Therapy 497
SECTION IX Paola M.Luzzatto and LucanneMagill
Principles of Psychotropic 65 Religion/Spirituality and Cancer:
Management ABrief Update of Selected Research 503

52 Psychotropic Medications in Cancer Care 419
David P.Yuppa and Ilana M.Braun
SECTION X
Evidence-Based Interventions
53 Principles of Psychotherapy 431
E. Alessandra Strada and Barbara M.Sourkes
54 Healthcare Provider Communication:
The Model of Optimal Therapeutic
Effectiveness 437
Harvey Max Chochinov and Heather Campbell-Enns
Andrea L.Canada and George Fitchett
66 Integrative Oncology 509
Alejandro Chaoul, Gabriel Lopez, Richard Tsong Lee,
M. Kay Garcia, Moshe Frenkel, and LorenzoCohen
67 Physical Activity and Exercise Interventions
inCancer Survivors 515
Kerry S.Courneya, Jennifer J.Crawford,
and Scott C.Adams
68 Acceptance and Commitment
Therapy (ACT) for Cancer Patients 521
Nick Hulbert-Williams and RayOwen
x contents

69 Psychosocial Interventions for 80 eHealth Interventions for Cancer

Couples and Families Coping Prevention and Control 600
with Cancer 526 Elliot J.Coups and Lee M.Ritterband
Talia I.Zaider and David W.Kissane
81 Negotiating the Interface of
70 Supportive-Expressive and Other Forms Psycho-Oncology and Ethics 607
ofGroup Psychotherapy in Marguerite S.Lederberg and Mark Lazenby
Cancer Care 532
82 Disparities in the Impact of Cancer 612
David W.Kissane and CatherineNgan
Rory C.Weier, Sarah A.Reisinger,
and Electra D.Paskett
SECTION XI 83
DSM-5 and Psycho-Oncology618
Geriatric Psycho-Oncology John W.Barnhill and Anna L.Dickermann
71 The Older Patient 541
Barbara Given and Charles W.Given SECTION:XIV
72 Special Considerations in Older Adults Survivorship
with Cancer:What Psycho-Oncologists 84 Fear of Cancer Recurrence 625
Should Know 549
Phyllis N.Butow, Joanna E.Fardell, and
Talia Weiss Wiesel and YesneAlici Allan BenSmith
73 Functional Assessment of Older 85 Positive Consequences of the Experience
Patients with Cancer 554 ofCancer:Perceptions of Growth
Martine Extermann and Meaning 630
Annette L.Stanton
SEC TION XII 86 Changing Health Behaviors
Psychological Issues After Treatment 635
for the Family Elizabeth Eakin and Wendy Demark-Wahnefried

74 A Family-Centered Approach to the 87 Implementing the Survivorship Care

Patient with Cancer 561 Plan:AStrategy for Improving the Quality
Douglas S.Rait ofCare for Cancer Survivors 644
Erin E.Hahn and Patricia A.Ganz
75 Spouse Caregivers of Cancer Patients 567
Laurel L.Northouse and Ruth McCorkle 88 Adult Survivors of Childhood Cancer 651
Lisa A.Schwartz, Branlyn Werba
76 Sexual Minority Health in Psycho-Oncology 574 DeRosa, and Anne E.Kazak
Youngmee Kim, Matthew J. Loscalzo, and KarenClark
89 Adolescents and Young Adults with Cancer 657
77 Addressing the Needs of Children Bradley J.Zebrack and Sheila J.Santacroce
When a Parent Has Cancer 579
Cynthia W.Moore and Paula K.Rauch
SEC TION XV
78 Bereavement:Theory, Clinical Presentation,
and Intervention in the Setting of
Professional Education and Building
Cancer Care 585 Supportive Care Programs
Wendy G.Lichtenthal, Holly G.Prigerson, 90 Principles of Communication Skills Training in
and David W.Kissane Cancer Care Across the Life Span and Illness
Trajectory 665
SEC TION XIII David W.Kissane and Phyllis N.Butow
Cross-Cutting Issues 91 Building Supportive Care Programs
in a Time of Great Opportunity 673
79 Cross-Cutting Gender-Based Issues
Matthew J.Loscalzo, Barry D.Bultz,
and Caregiving 595
Karen Clark, and Paul B.Jacobsen
Youngmee Kim, Karen Clark, and
Matthew J.Loscalzo
 contents xi

92 Oncology Staff Stress and Related 99 Collaborative Psychosocial Oncology Care

Interventions 679
Mary L.S. Vachon and Phyllis N.Butow
93 Training Psychiatrists and Psychologists
inPsycho-Oncology 684
Michael A.Hoge and Andrew J.Roth
94 Educating and Training Professional Social
Workers in Psycho-Oncology 689
Victoria Kennedy, Kathryn M.Smolinski,
Yvette Coln, and JamesZabora
95 Education of Nurses in Psycho-Oncology 695
Terry A.Badger, Barb Henry, and Ruth McCorkle
96 Education of Chaplains in
Models 717
Jesse R.Fann and JenniferSexton
SEC TION XVI
Psycho-Oncology in Health Policy
100 Changes in US Policy:Psychosocial
Care as an Integral Component of
Cancer Care Delivery 729
Lynne I.Wagner and Timothy Pearman
101 Distress as the Sixth Vital Sign:An
EmergingInternational Symbol for
ImprovingPsychosocial Care 735

Psycho-Oncology 700 Barry D.Bultz, Matthew J.Loscalzo,

and Jimmie C.Holland
Stephen D.W. King, George Fitchett,
and Anne Vandenhoeck 102 Emerging International Directions for
97 Training and Education of Psychosocial Care 739

Patient Advocates 705 Jeff Dunn, Barry D.Bultz, and

MaggieWatson
AfafGirgis
98 The Engaged Patient:The Cancer
SupportCommunitys Integrative Model Index 745

ofEvidence-Based Psychosocial Programs,

Services, and Research 710
Mitch Golant, Joanne Buzaglo,
and Kim Thiboldeaux
 Contributors

Scott C.Adams, BSc, MSc, CSEP-CEP Terry A.Badger, PhD, RN, PMHCNS-BC,FAAN
Behavioral Medicine Laboratory Professor and Division Director of Community and Systems
Department of Physical Education and Recreation Health Science
University of Alberta College of Nursing
Edmonton, Alberta,Canada The University of Arizona CancerCenter
Tucson, Arizona
Tim A.Ahles,PhD
Attending Psychologist John W.Barnhill,MD
Director, Neurocognitive Research Laboratory Professor of Clinical Psychiatry and Clinical PublicHealth
Department of Psychiatry and Behavioral Sciences Weill Cornell Medical College
Memorial Sloan-Kettering Cancer Center NewYork-Presbyterian Hospital
Professor of Psychology in Psychiatry NewYork, NewYork
Weill Medical College of Cornell University
New York, New York Alan T.Bates, MD,PhD
Department of Psychiatry and Behavioral Sciences
Yesne Alici,MD Memorial Sloan-Kettering CancerCenter
Assistant Attending Psychiatrist NewYork, NewYork
Memorial Sloan-Kettering CancerCenter
Assistant Professor of Psychiatry Joan R.Bloom,PhD
Weill Medical College of Cornell University Professor of Health Policy and Management
NewYork, NewYork School of PublicHealth
University of California, Berkeley
Barbara L.Andersen,PhD Berkeley, California
Comprehensive Cancer Center and Solove Research Institute
Department of Psychology Eveline M.A. Bleiker,PhD
The Ohio State University Division of Psychosocial Research and Epidemiology
Columbus,Ohio Family CancerClinic
The Netherlands Cancer Institute
Charissa Andreotti,PhD Amsterdam, The Netherlands
Department of Psychiatry and Behavioral Sciences
Memorial Sloan-Kettering CancerCenter Julienne E.Bower,PhD
NewYork, NewYork Associate Professor of Psychology
Departments of Psychology and Psychiatry/Biobehavioral
Allison J.Applebaum,PhD Sciences
Assistant Attending Psychologist University of California, Los Angeles
Department of Psychiatry and Behavioral Sciences Los Angeles, California
Memorial Sloan Kettering CancerCenter
NewYork, NewYork Allison Boyes,PhD
Priority Research Centre for Health Behavior
Bruce K.Armstrong, MBBS (Hons), BMedSc (Hons),DPhil Faculty ofHealth
Cancer Epidemiology and Services Research University of Newcastle
Sydney School of PublicHealth Callaghan, New South Wales, Australia
Sydney MedicalSchool
The University ofSydney
Sydney, Australia
xiv contributors

Thomas H.Brandon, PhD Mariko Carey, D.Psych

Chair, Department of Health Outcomes and Behavior Priority Research Centre for Health Behavior
Moffitt Cancer Center Faculty ofHealth
Tampa, Florida University of Newcastle
Callaghan, New South Wales, Australia
Ilana M.Braun,MD
Assistant Professor of Psychiatry Linda E.Carlson, PhD,CPsych
Harvard MedicalSchool Faculty of Medicine
Chief of Adult Psychosocial Oncology Department of Oncology
Dana-Farber Cancer Institute Division of Psychosocial Oncology
Boston, Massachusetts University of Calgary
Department of Psychosocial Resources
Darren M.R. Brenner,PhD Tom Baker CancerCentre
Department of Cancer Epidemiology Alberta Health Services CancerCare
and Prevention Research Calgary, Alberta,Canada
Alberta Health Services-CancerControl
Calgary, Alberta, Canada Jeanne Carter,PhD
Female Sexual Medicine and Womens Health Program
William S. Breitbart, MD Gynecology Service
Chairman, Jimmie Holland Chair in Psychiatric Oncology Departments of Surgery and Psychiatry
Department of Psychiatry and Behavioral Sciences Memorial Sloan-Kettering CancerCenter
Memorial Sloan-Kettering Cancer Center NewYork, NewYork
Professor of Clinical Psychiatry
Weill Medical College of Cornell University Alejandro Chaoul,PhD
New York, New York Assistant Professor of General Oncology
The University of Texas MD Anderson CancerCenter
Michelle R.Brown,PhD Houston,Texas
Clinical Associate Professor of Psychiatry
and Behavioral Sciences Harvey Max Chochinov, MD, PhD, FRCPS,FRSC
Division of Child and Adolescent Psychiatry Chair, Canadian Virtual Hospice
Stanford University School of Medicine Director, Manitoba Palliative Care ResearchUnit
Stanford, California Department of Psychiatry
University of Manitoba
Barry D.Bultz,PhD Winnipeg, Manitoba,Canada
Professor of Psychiatry
Tom Baker CancerCentre Karen Clark,MS
University of Calgary Department of Population Science, Supportive Care Medicine
Calgary, Alberta,Canada City ofHope
Duarte, California
Phyllis N. Butow, PhD, MPH
Professor of Psychology Lorenzo Cohen,PhD
Chair, Psycho-oncology Co-operative Professor of General Oncology
Research Group Division of Cancer Medicine
Co-Director, Centre for Medical Psychology The University of Texas MD Anderson CancerCenter
and Evidence-based Decision-making Houston,Texas
University of Sydney
Sydney, New South Wales, Australia Yvette Coln, PhD, ACSW,BCD
Assistant Professor of SocialWork
Joanne Buzaglo,PhD Eastern Michigan University
Vice President, Research and Training Ypsilanti, Michigan
Cancer Support Community
Washington,D.C. Stephen R.Connor,PhD
SeniorFellow
Heather Campbell-Enns,MSc Worldwide Palliative Care Alliance
Department of Psychiatry London, United Kingdom
University of Manitoba
Winnipeg, Manitoba,Canada Mary E.Cooley, PhD,RN
Lecturer in Psychiatry
Andrea L.Canada,PhD Harvard MedicalSchool
Associate Professor of Psychology Nurse Scientist
Biola University Dana-Farber Cancer Institute
La Mirada, California Boston, Massachusetts

Denise D.Correa,PhD
Department of Neurology
Memorial Sloan-Kettering CancerCenter
NewYork, NewYork
Shelly Cory,MA
Executive Director
Canadian Virtual Hospice
Winnipeg, Manitoba,Canada
Elliot J.Coups,PhD
Rutgers Cancer Institute of NewJersey
Department of Medicine
Rutgers Robert Wood Johnson MedicalSchool
Rutgers, The State University of NewJersey
New Brunswick, NewJersey
Kerry S.Courneya,PhD
Faculty of Physical Education and Recreation
University of Alberta
Edmonton, Alberta,Canada
Jennifer J.Crawford,MSc
Behavioral MedicineLab
Department of Physical Education
and Recreation
University of Alberta
Edmonton, Alberta,Canada
Anne E.Cust, PhD, MPH (Hons), BA,BSc
Cancer Epidemiology and Services Research
Sydney School of PublicHealth
Sydney MedicalSchool
The University ofSydney
Sydney, Australia
Wendy Demark-Wahnefried, PhD,RD
Professor and Chair of Nutrition Sciences
UAB Comprehensive CancerCenter
University of Alabama
Birmingham, Alabama
Gerald M.Devins,PhD
Ontario Cancer Institute
Princess Margaret Hospital
University of Toronto
Toronto, Ontario,Canada
Melissa DiCarlo, MPH,MS
Clinical Research Coordinator
Department of Medical Oncology
Thomas Jefferson University
Philadelphia, Pennsylvania
Anna L.Dickerman,MD
Department of Psychiatry
NewYork Presbyterian Hospital
NewYork, NewYork
Brian Dietrich,MD
Resident Physician
Department of Internal Medicine
Stanford University Hospital and Clinics
Palo Alto, California
contributors xv
Joanna S.Dognin,PsyD
Clinical Assistant Professor of Psychiatry
NYU Langone MedicalCenter
NewYork, NewYork
Heidi S. Donovan, PhD, RN
Associate Professor of Nursing
University of Pittsburgh
Pittsburgh, Pennsylvania
Kristine A.Donovan, PhD,MBA
Assistant Member
Department of Health Outcomes and Behavior
Moffitt Cancer Center and Research Institute
Tampa, Florida
Matthew N.Doolittle, MD,PhD
Department of Psychiatry and
Behavioral Sciences
Memorial Sloan-Kettering CancerCenter
NewYork, NewYork
Caroline S.Dorfman,MA
Department of Psychology
The Ohio State University
Columbus,Ohio
Katherine N.DuHamel,PhD
Department of Psychiatry
and Behavioral Sciences
Memorial Sloan-Kettering CancerCenter
NewYork, NewYork
Jeff Dunn, AO
Chief Executive Officer
Cancer Council Queensland Fortitude
Valley, Queensland, Australia
Elizabeth Eakin,PhD
Professor of Health Behavior Interventions
Director of Cancer Prevention ResearchCentre
University of Queensland
Herston, Queensland, Australia
Mary Jane Esplen, PhD,RN
Executive Director, de Souza Institute
Professor of Psychiatry
Department of Medicine
University of Toronto
Clinician-Scientist
University Health Network
Toronto, Ontario,Canada
Martine Extermann,MD
Department of Senior Adult Oncology
Moffitt CancerCenter
University of South Florida
Tampa, Florida
xvi contributors

Jesse R.Fann, MD,MPH Patricia A.Ganz,MD

Professor, Department of Psychiatry and Behavioral Sciences Fielding School of PublicHealth
Adjunct Professor, Departments of Rehabilitation Medicine University of California, Los Angeles
and Epidemiology Director, Cancer Prevention & Control Research
University of Washington Jonsson Comprehensive CancerCenter
Clinical Research Division, Fred Hutchinson Cancer Los Angeles, California
ResearchCenter
Director, Psychiatry and Psychology, Seattle Cancer Care Linda Ganzini, MD,MPH
Alliance Professor of Psychiatry and Medicine
Seattle, Washington Oregon Health and Science University
Portland VA MedicalCenter
Joanna E.Fardell PhD, BSc(Hons) Portland,Oregon
Research Coordinator, Psycho-oncology Co-operative
ResearchGroup M. Kay Garcia, DrPH, MSN, MSOM, RN,Lac
University ofSydney Associate Professor of General Oncology
Sydney, New South Wales, Australia Division of Cancer Medicine
The University of Texas MD Anderson CancerCenter
Sara Fernandes-Taylor,PhD Houston,Texas
Department of Population Health Sciences
University of Wisconsin Ted Avi Gerstenblith,MD
Madison, Wisconsin Department of Psychiatry
Massachusetts General Hospital
George Fitchett, PhD,DMin Boston, Massachusetts
Department of Religion, Health, and HumanValues
Rush University MedicalCenter Afaf Girgis, PhD, BSc(Hons)
Chicago, Illinois Ingham Institute for Applied Medical Research
South Western Sydney ClinicalSchool
Peter Fitzgerald,MD UNSW Medicine
Department of Psychosocial Oncology and PalliativeCare The University of New SouthWales
Princess Margaret CancerCentre Sydney, New South Wales, Australia
University Health Network
Toronto, Ontario,Canada Barbara Given, PhD, RN,FAAN
Faculty of Medicine University Distinguished Professor
Department of Psychiatry College of Nursing
University of Toronto Michigan State University
Toronto, Ontario,Canada East Lansing, Michigan

Marian L.Fitzgibbon,PhD Charles W.Given,PhD

Professor of Medicine and Health Policy and Professor of Family Medicine
Administration College of Human Medicine
UIC Institute for Health Research and Policy Michigan State University
University of Illinois at Chicago and University East Lansing, Michigan
of Illinois Cancer Center
Chicago, Illinois Neha Godiwala,MA
Department of Psychology
Moshe Frenkel,MD The Ohio State University
Clinical Associate Professor of General Oncology Columbus,Ohio
University of Texas MD Anderson CancerCenter
Houston,Texas Mitch Golant,PhD
Senior Vice President, Strategic Initiatives
Christine M.Friedenreich,PhD Cancer Support Community
Department of Cancer Epidemiology and Prevention Research Washington,D.C.
Alberta Health Services-CancerControl
Faculty of Medicine Alejandro Gonzlez-Restrepo,MD
Departments of Oncology and Community Staff Psychiatrist
Health Sciences Saint FrancisCare
University of Calgary Hartford, Connecticut
Calgary, Alberta,Canada
 contributors xvii

Luigi Grassi,MD Glen Horst, MDiv,DMin

Professor and Chair of Psychiatry Spiritual Care Adviser
Department of Biomedical and Specialty Canadian Virtual Hospice
Surgical Sciences Winnipeg, Manitoba,Canada
University of Ferrara
Director, Hospital PsychiatryUnit Barb Henry, MSN, APRN-BC
Department of MentalHealth Psychiatric Nurse Practitioner
University S.Anna Hospital and Local Health Authority Melvin S.Gale MD and Associates
Ferrara,Italy Cincinnati,Ohio

Mindy Greenstein,PhD Michael A.Hoge,PhD

Department of Psychiatry and Behavioral Sciences Professor of Psychiatry
Memorial Sloan-Kettering CancerCenter Yale School of Medicine
NewYork, NewYork New Haven, Connecticut

Joseph A.Greer,PhD Siu-kuen Azor Hui,PhD

Assistant Professor of Psychology Adjunct Professor
Department of Psychiatry Cancer Prevention and Control Program
Harvard MedicalSchool Fox Chase Cancer Center/Temple Health
Massachusetts General Hospital CancerCenter University Health System
Boston, Massachusetts Philadelphia, Pennsylvania

Anne F.Gross,MD Nick Hulbert-Williams, PhD, CPsychol

Associate Professor of Psychiatry Department of Psychology
Oregon Health and Science University University of Chester
Portland,Oregon Chester, United Kingdom

Teresa L.Hagan, BSN,RN,BA Lucy E.Hutner,MD

Department of Acute and TertiaryCare Assistant Professor of Psychiatry
School of Nursing NewYork University School of Medicine
University of Pittsburgh NewYork, NewYork
Pittsburgh, Pennsylvania
Jimmie C. Holland, MD
Erin E.Hahn, PhD,MPH Wayne E. Chapman Chair in Psychiatric Oncology
Kaiser Permanente Southern California Department of Psychiatry and Behavioral Sciences
Department of Research and Evaluation Memorial Sloan-Kettering Cancer Center
Pasadena, California Professor of Psychiatry
Weill Medical College of Cornell University
Sarah Hales, MD,PhD New York, New York
Department of Psychosocial Oncology and
PalliativeCare Jonathan C.Irish,MD
Princess Margaret CancerCentre Ontario Cancer Institute
University Health Network Princess Margaret Hospital
Department of Psychiatry University of Toronto
University of Toronto Toronto, Ontario,Canada
Toronto, Ontario,Canada Paul B. Jacobsen, PhD
Mike Harlos, MD, CCFP,FCFP Associate Center Director, Division of Population Science
ClinicalLead Moffitt Cancer Center and Research Institute
Canadian Virtual Hospice Professor of Psychology
Medical Director University of South Florida
Winnipeg Regional Health Authority Palliative Tampa, Florida
Care Program
Winnipeg, Manitoba,Canada

Brenda Hearson, RN, MN, CHPCN(C),CNS

Clinical Nurse Specialist
Canadian Virtual Hospice
Winnipeg Regional Health Authority Palliative Care Program
Winnipeg, Manitoba,Canada
xviii contributors

Reena Jaiswal,MD Maia S.Kredentser,MSc

Department of Psychiatry and Behavioral Department of Psychology
Sciences University of Manitoba
Memorial Sloan Kettering CancerCenter Manitoba Palliative Care ResearchUnit
NewYork, NewYork CancerCare Manitoba
Winnipeg, Manitoba,Canada
Christoffer Johansen, MD, PhD, DMSc
Oncology Clinic, Finsen Centre, Rigshospitalet Robert S.Krouse, MD,FACS
Institute of PublicHealth Staff General and Oncologic Surgeon
Unit of Survivorship Southern Arizona Veterans Affairs Health CareSystem
The Danish Cancer Society Research Centre Professor of Surgery
Copenhagen, Denmark College of Medicine
University of Arizona
Anne E. Kazak, PhD, ABPP Tucson, Arizona
Emeritus Professor CE of Psychology in Pediatrics
University of Pennsylvania Perleman School of Medicine Mark Lazenby, APRN,PhD
Co-Director, Center for Healthcare Delivery Science Assistant Professor of Nursing and Divinity
Nemours Alfred I.duPont Hospital for Children Yale University
Wilmington, Delaware New Haven, Connecticut

Victoria Kennedy,LCSW Amy Leader, PhD,MPH

Vice President of Program Development & Delivery Assistant Professor
Cancer Support Community Department of Medical Oncology
Washington,D.C. Thomas Jefferson University
Philadelphia, Pennsylvania
R. Garrett Key,MD
Assistant Attending Psychiatrist Marguerite S.Lederberg,MD
Department of Psychiatry and Behavioral Sciences Emerita Psychiatrist
Memorial Sloan-Kettering CancerCenter Department of Psychiatry and Behavioral Sciences
NewYork, NewYork Memorial Sloan-Kettering CancerCenter
Emerita Professor of Clinical Psychiatry
Youngmee Kim,PhD Weill Medical College of Cornell University
Department of Psychology NewYork, NewYork
University ofMiami
Coral Gables, Florida Minsun Lee,PhD
Postdoctoral Fellow
Stephen D.W. King,PhD Department of Psychosocial and Behavioral Medicine
Chaplaincy Fox Chase Cancer Center/Temple Health University System
Seattle Cancer Care Alliance Philadelphia, Pennsylvania
Seattle, Washington
Richard Tsong Lee,MD
Kenneth L.Kirsh,PhD Assistant Professor of General Oncology
Clinical Research Educator and Research Scientist The University of Texas MD Anderson CancerCenter
Millennium Research Institute Houston,Texas
San Diego, California
Mitch Levy,MD
David W.Kissane, MD, MPM, FRANZCP,FAChPM Associate Professor
Department of Psychiatry Department of Psychiatry and Behavioral Sciences
Monash University University of Washington
Monash MedicalCentre Psychiatry and Psychology
Victoria, Australia Seattle Cancer Care Alliance
Seattle, Washington
James Klosky,PhD
Department of Psychology Madeline Li, MD,PhD
St. Jude Childrens Research Hospital Department of Psychosocial Oncology and PalliativeCare
Memphis, Tennessee Princess Margaret CancerCentre
University Health Network
Tish Knobf, PhD, RN, FAAN,AOCN Toronto, Ontario,Canada
Professor of Nursing
Chair, Division of Acute Care/Health Systems
Yale School of Nursing
West Haven, Connecticut
 contributors xix

Wendy G.Lichtenthal,PhD Ruth McCorkle, PhD, RN, FAAN

Assistant Attending Psychologist Florence Schorske Wald Professor
Department of Psychiatry and Behavioral Sciences Yale School of Nursing
Memorial Sloan Kettering CancerCenter Professor of Epidemiology and Public Health
Assistant Professor of Psychology in Psychiatry Yale School of Medicine
Weill Medical College of Cornell University Program Leader, Population Sciences and Cancer Control
NewYork, NewYork Yale Cancer Center
West Haven, Connecticut
Christopher Lo,PhD
Psychosocial Oncology and PalliativeCare Kimberly Miller,MD
The Princess Margaret CancerCentre Department of Psychosocial Oncology and
University Health Network PalliativeCare
Department of Psychiatry Princess Margaret CancerCentre
University of Toronto University Health Network
Toronto, Ontario,Canada Toronto, Ontario,Canada
Faculty of Medicine
Matthew J. Loscalzo, MSW Department of Psychiatry
Liliane Elkins Professor in Supportive Care Programs University of Toronto
Administrative Director
Sheri & Les Biller Patient and Family Resource Center Suzanne M.Miller,PhD
Executive Director Director and Professor
Department of Supportive Care Medicine Department of Psychosocial and Behavioral Medicine
Professor of Population Sciences Fox Chase Cancer Center/Temple Health University System
City of Hope Philadelphia, Pennsylvania
Duarte, California
Alex J.Mitchell
Gabriel Lopez,MD Department of Cancer Studies
Assistant Professor of General Oncology University of Leicester
The University of Texas MD Anderson CancerCenter Leicester, United Kingdom
Houston,Texas
Cynthia W.Moore,PhD
Amy E.Lowery,PhD Assistant Professor of Psychology
School of Medicine Department of Psychiatry
University of Pittsburgh Harvard MedicalSchool
Pittsburgh, Pennsylvania Clinical Assistant in Psychology
Massachusetts General Hospital
Paola M.Luzzatto,PhD Boston, Massachusetts
Art Therapy Italiana
Bologna,Italy Stirling Moorey, MRCPsych, BSc,MBBS
South London and Maudsley NHS FoundationTrust
James MacDonald,BS Institute of Psychiatry
Massachusetts General Hospital CancerCenter Kings CollegeLondon
Harvard MedicalSchool London, United Kingdom
Boston, Massachusetts
Caitlin C.Murphy,MPH
Neil MacDonald, CM, MD, FRCPC, FRCP(Edin) Department of Epidemiology
Emeritus Professor of Oncology Gillings School of PublicHealth
McGill University The University of North Carolina at ChapelHill
Emeritus Professor of Medicine Chapel Hill, North Carolina
University of Alberta
Westmount, Quebec,Canada Ronald E.Myers, DSW,PhD
Professor
Lucanne Magill, LCAT,MT-BC Department of Medical Oncology
Manager, Creative Arts Therapy Thomas Jefferson University
The Institute for Innovation in PalliativeCare Philadelphia, Pennsylvania
Metropolitan Jewish Health System
New York, New York

Amy McQueen,PhD
Washington University
School of Medicine
St. Louis, Missouri
xx contributors

Maria Giulia Nanni,MD Electra D.Paskett,PhD

Assistant Professor of Psychiatry Ohio State University Comprehensive CancerCenter
Department of Biomedical and Specialty James Cancer Hospital and Solove Research Institute
Surgical Sciences Division of Epidemiology
University of Ferrara College of PublicHealth
Hospital PsychiatryUnit Division of Cancer Prevention and Control
Department of MentalHealth Department of Internal Medicine
University S.Anna Hospital and Local Health Authority College of Medicine
Ferrara,Italy The Ohio State University
Columbus,Ohio
Heather K.Neilson,MSc
Department of Cancer Epidemiology and Prevention Research Steven D.Passik,PhD
Alberta Health Services-CancerControl Director of Clinical Addiction Research and Education
Alberta, Calgary, Canada Millennium Laboratories
San Diego, California
Christian J.Nelson,PhD
Department of Psychiatry and Behavioral Sciences Andrea Farkas Patenaude,PhD
Memorial Sloan-Kettering CancerCenter Director of Psychology Research and Clinical Services
NewYork, NewYork Center for Cancer Genetics and Prevention
Dana-Farber Cancer Institute
Fred Nelson, MSW,RSW Boston, Massachusetts
Psychosocial Consultant
Canadian Virtual Hospice Timothy Pearman,PhD
Psychosocial Specialist Department of Medical Social Sciences
Winnipeg Regional Health Authority Palliative Department of Psychiatry & Behavioral Sciences
Care Program Northwestern University Feinberg School of Medicine
Winnipeg, Manitoba,Canada The Robert H.Lurie Comprehensive Cancer Center of
Northwestern University
Arthur M.Nezu, PhD,ABPP Chicago, Illinois
Department of Psychology
Drexel University Hayley Pessin,PhD
Philadelphia, Pennsylvania Clinical Instructor in Psychology
Weill Cornell Medical College
Christine Maguth Nezu, PhD,ABPP NewYork-Presbyterian Hospital
Department of Psychology NewYork, NewYork
Drexel University
Philadelphia, Pennsylvania Susan K.Peterson, PhD,MPH
Associate Professor of Behavioral Science
CatherineNgan The University of Texas MD Anderson CancerCenter
Department of Psychiatry Houston,Texas
Monash University
Monash MedicalCentre Hermine Poghosyan, PhD, MPH,BSN
Victoria, Australia Assistant Professor of Nursing and Health Sciences
University of Massachusetts,Boston
Laurel L. Northouse, PhD, RN, FAAN Boston, Massachusetts
Professor Emerita
School of Nursing Holly G.Prigerson,PhD
University of Michigan Professor of Psychiatry
Ann Arbor, Michigan Harvard MedicalSchool
Director of Psycho-Oncology Research
Kristen J.Otto,MD Psychosocial Oncology and PalliativeCare
Department of Head & Neck Surgical Oncology Dana-Farber Cancer Institute
Moffitt CancerCenter Boston, Massachusetts
Tampa, Florida
Douglas S.Rait,PhD
Ray Owen, DClinPsy, CPsychol Clinical Professor of Psychiatry and Behavioral Sciences
Health Psychology Department Chief, Couples and Family TherapyClinic
Wye Valley NHSTrust Stanford University School of Medicine
Hereford, United Kingdom Stanford, California
 contributors xxi

Kavitha Ramchandran,MD Kristin E.Salber,MS

Medical Director, Supportive Oncology Department of Psychology
Clinical Assistant Professor of Oncology Drexel University
Stanford University Hospital and Clinics Philadelphia, Pennsylvania
Palo Alto, California
Leonard B.Saltz,MD
Paula K.Rauch,MD Division of Solid Tumor Oncology
Associate Professor of Psychiatry Department of Medicine
Harvard MedicalSchool Memorial Sloan Kettering CancerCenter
Massachusetts General Hospital NewYork, NewYork
Boston, Massachusetts
Rob Sanson-Fisher,PhD
Sarah A.Reisinger, MPH,MCHES Priority Research Centre for Health
Ohio State University Comprehensive CancerCenter Behavior
James Cancer Hospital and Solove Research Institute Faculty ofHealth
Division of Health Behavior Health Promotion University of Newcastle
College of PublicHealth Callaghan, New South Wales, Australia
The Ohio State University
Columbus,Ohio Sheila J.Santacroce, PhD, RN, APRN,CPNP
Associate Professor of Nursing
Lee M.Ritterband,PhD University of North Carolina
Department of Psychiatry and Neurobehavioral Sciences Chapel Hill, North Carolina
University of Virginia HealthSystem
Charlottesville, Virginia Linda Sarna, PhD, RN, FAAN,AOCN
Professor of Nursing
Gary Rodin,MD University of California
Department of Psychosocial Oncology and PalliativeCare Los Angeles, California
Princess Margaret CancerCentre
University Health Network John Scarpato,MA
Faculty of Medicine Project Manager
Department of Psychiatry Department of Psychosocial and Behavioral Medicine
University of Toronto Fox Chase Cancer Center/Temple Health University System
Toronto, Ontario,Canada Philadelphia, Pennsylvania

James C.Root,PhD Dena Schulman-Green,PhD

Assistant Attending Neuropsychologist Division of Acute Care/Health Systems
Neurocognitive Research Laboratory Yale School of Nursing
Department of Psychiatry and Behavioral Sciences West Haven, Connecticut
Memorial Sloan-Kettering CancerCenter Lisa A.Schwartz,PhD
NewYork, NewYork Department of Psychology
Andrew J.Roth,MD Childrens Hospital of Philadelphia
Attending Psychiatrist Philadelphia, Pennsylvania
Department of Psychiatry and Behavioral Sciences Barbara Seidel,RN
Memorial Sloan-Kettering CancerCenter Female Sexual Medicine and Womens
Professor of Clinical Psychiatry Health Program
Weill Cornell Medical College Gynecology Service
NewYork, NewYork Department of Surgery
Elizabeth Ryan,PhD Memorial Sloan-Kettering CancerCenter
Assistant Attending Neuropsychologist NewYork, NewYork
Neurocognitive Research Laboratory Peter A.Selwyn, MD,MPH
Department of Psychiatry and Behavioral Sciences Professor of Family and Social Medicine, Epidemiology &
Memorial Sloan-Kettering CancerCenter Population Health, and Psychiatry and
NewYork, NewYork Behavioral Sciences
Adam Rzetelny,PhD Albert Einstein College of Medicine
Millennium Research Institute Montefiore MedicalCenter
San Diego, California Bronx, NewYork
xxii contributors

Jennifer Sexton,MD E. Alessandra Strada, PhD, MSCP,FT

Acting Assistant Professor, Department of Psychiatry and Director of Integrative Medicine and Bereavement Services
Behavioral Sciences Institute for Innovation in PalliativeCare
University of Washington Metropolitan Jewish Hospice and PalliativeCare
Psychiatry and Psychology NewYorkCity
Seattle Cancer Care Alliance Adjunct Associate Professor of East-West Psychology
Seattle, Washington California Institute of Integral Studies, San Francisco
Adjunct Faculty, Psychopharmacology Program
Vani N.Simmons,PhD Alliant University, San Francisco
Department of Health Outcomes and Behavior
Moffitt Cancer Center Virginia Sun, RN,PhD
Tampa, Florida Assistant Professor of Population Sciences
Division of Nursing Research & Education
Allan Ben Smith, BSc(Hons) City ofHope
Research Coordinator Duarte, California
Psycho-oncology Co-operative ResearchGroup
University ofSydney Kim Thiboldeaux
Sydney, New South Wales, Australia President&CEO
Cancer Support Community
Felicia A.Smith,MD Washington,D.C.
Assistant Professor of Psychiatry
Massachusetts General Hospital Roma S.Tickoo MD,MPH
Boston, Massachusetts Assistant Attending
Palliative Medicine Service
Kathryn M.Smolinski, JD,MSW Department of Medicine
Director Memorial Sloan-Kettering CancerCenter
Legal Advocacy for People with CancerClinic NewYork, NewYork
Wayne State University
Detroit, Michigan Edouard Trabulsi,MD
Associate Professor of Urology
Barbara M.Sourkes,PhD Department of Urology
Professor of Pediatrics Thomas Jefferson University
Stanford University School of Medicine Philadelphia, Pennsylvania
Lucile Salter Packard Childrens Hospital
Palo Alto, California Lara Traeger,PhD
Massachusetts General Hospital CancerCenter
Sheri L.Spunt, MD,MBA Harvard MedicalSchool
Professor of Pediatrics Boston, Massachusetts
Division of Hematology/Oncology
Stanford University School of Medicine Peter C.Trask,PhD
Palo Alto, California Center for Health Communications Research
University of Michigan
Annette L.Stanton,PhD Director in Oncology in the Global Evidence and Value
Departments of Psychology & Psychiatry/Biobehavioral Development
Sciences Sanofi,Inc.
Center for Cancer Prevention and Ann Arbor, Michigan
Control Research
Jonsson Comprehensive CancerCenter Lisa Tussing-Humphreys, PhD,MS,RD
Univerity of California Assistant Professor of Medicine
Los Angeles, California Division of Health Promotion Research
University of Illinois at Chicago and University of Illinois
Theodore A.Stern,MD Cancer Center
Professor of Psychiatry Chicago, Illinois
Massachusetts General Hospital
Boston, Massachusetts MarinaUnrod, PhD
Department of Health Outcomes and Behavior
Melinda R.Stolley,PhD Moffitt Cancer Center
Associate Professor of Medicine Tampa, Florida
Division of Health Promotion Research
UIC College of Medicine Mary L.S. Vachon,MD
University of Illinois at Chicago and Professor of Psychiatry
University of Illinois Cancer Center University of Toronto
Chicago, Illinois Toronto, Ontario,Canada
 contributors xxiii

Alan D.Valentine,MD Rory C.Weier,MPH

Professor and Chair of Psychiatry Ohio State University Comprehensive CancerCenter
The University of Texas MD Anderson CancerCenter James Cancer Hospital and Solove Research Institute
Houston,Texas Division of Epidemiology
College of PublicHealth
Anne Vandenhoeck,PhD The Ohio State University
Academic Centre for Practical Theology Columbus,Ohio
Faculty of Theology and Religious Studies
KULeuven Talia R. Weiss Wiesel,PhD
Belgium Psychology Intern
Department of Psychiatry
Anna M.Varghese,MD Payne Whitney Manhattan
Division of Solid Tumor Oncology New York Presbyterian Weill Cornell Medical Center
Department of Medicine New York, New York
Memorial Sloan Kettering CancerCenter
NewYork, NewYork Branlyn Werba DeRosa,PhD
Clinical Psychologist
Sally W.Vernon,PhD Center City Pediatrics
Department of Health Promotion and Behavioral Sciences Philadelphia, Pennsylvania
The University of Texas-Houston
School of Public Health John D.Wynn, MD,DFAPA
Houston, Texas Department of Psychiatry
Swedish MedicalCenter
Jamie H.Von Roenn,MD Seattle, Washington
Professor of Medicine
Division of Hematology/Oncology David P.Yuppa,MD
Feinberg School of Medicine Instructor in Psychiatry
Robert Lurie Comprehensive Cancer Center Dana-Farber Cancer Institute
Northwestern University Boston, Massachusetts
Chicago, Illinois
James Zabora, ScD,MSW
Edward H.Wagner Director, Life with Cancer Program
MacColl Center for Health Care Innovation Inova HealthSystem
Group Health Research Institute Falls Church, Virginia
Group Health Cooperative
Seattle, Washington Talia I.Zaider,PhD
Department of Psychiatry and Behavioral Sciences
Lynne I.Wagner,PhD Memorial Sloan-Kettering CancerCenter
Department of Medical Social Sciences NewYork, NewYork
Department of Psychiatry & Behavioral Sciences
Northwestern University Feinberg School of Medicine Bradley J.Zebrack, PhD, MSW,MPH
The Robert H.Lurie Comprehensive Cancer Center of Associate Professor of SocialWork
Northwestern University University of Michigan
Chicago, Illinois Ann Arbor, Michigan

Amy Waller,PhD Charnita Zeigler-Johnson,PhD

Priority Research Centre for Health Behavior Assistant Professor
Faculty ofHealth Department of Medical Oncology
University of Newcastle Thomas Jefferson University
Callaghan, New South Wales, Australia Philadelphia, Pennsylvania

Maggie Watson, BSc (Hons), PhD, DipClinPsych,

AFBPS, C Psychol
Royal Marsden NHS Foundation Trust and Institute
of Cancer Research
Sutton, United Kingdom
Research Department of Clinical, Educational
and Health Psychology
University College London
London, United Kingdom
 Introduction
History of Psycho-Oncology
Jimmie C.Holland and Talia WeissWiesel
Medicine is a social science in its very bone marrow....No
physiologist or practitioner ought ever to forget that medicine
unites in itself all knowledge of the laws which apply to the body
and the mind.
Rudolf Virchow (18211902), German pathologist
Given the overwhelming importance of psychological issues in
cancer, it is surprising that psycho-oncology began only in the
mid-1970s. It becomes understandable, however, when one recog-
nizes that, in Western countries, the centuries-old stigma attached
to cancer diminished in the late twentieth century only when
patients began to be told their diagnosis. This made it possible to
openly explore and study patients psychological responses for the
first time. However, it is crucial to understand societys attitudes
toward cancer and toward mental illness, because these attitudes
still impact patients willingness to accept counseling services.
This Introduction explores the history of psycho-oncology, with
initial attention to the ways in which the long-standing beliefs and
stigma attached to cancer and mental illness constituted major
barriers to improving the optimal psychosocial care of patients
with cancer.
ATTITUDINAL BARRIERS:ATTITUDES
RELATED TOCANCER
In the 1800s, as with previous centuries, a cancer diagnosis was
viewed as the equivalent of death. There was no known cause or
cure. Revealing the diagnosis to a patient was considered cruel
and inhumane because it was believed the patient would lose all
hope and could cope better by not knowing. This was viewed as
an acceptable white lie, although the patients family was always
told. Tolstoy, in The Death of Ivan Ilyich,1 graphically describes
the consequences Ilyich felt in nineteenth-century Russia when
his family and doctor pretended that his intense stomach pain,
likely due to cancer, was nothing serious. Ilyich struggled alone
with his pain and awareness that he was mortally ill. Only his ser-
vant talked with him honestly about his mortality.
Shame and guilt over a cancer diagnosis were such that the
family would not reveal the diagnosis to others. Lesions were
unsightly, often unhealing, and similar in appearance to those of
syphilis, which added to the stigma.
Early in the twentieth century, however, surgical treatment
became possible. Anesthesia was discovered, and surgical proce-
dures could be more extensively undertaken to remove cancer-
ous tumors. Antisepsis began to reduce postoperative infections.
Radiation joined surgery as a treatment for cancer early in the first
quarter of the twentieth century, following the pioneering work of
Marie Curie in Paris. However, it was offered mainly as palliation,
often after surgical failure, and people feared it, as they did surgery.2
The radiation dose was often poorly calibrated; burns were common.
As treatment improved, public health campaigns arose.
Educational programs began in Europe, informing people about
early suspicious symptoms of cancer that, if heeded, could lead to
cure by surgery. The American Cancer Society, formed in 1913,
was the first attempt in the United States to alter the publics igno-
rance and fatalistic attitudes toward cancer. The Societys man-
date was to disseminate knowledge concerning the symptoms,
treatment and prevention of cancer3 (Figures I.1 and I.2). Such
slogans as Fight cancer with knowledge were used to combat
publicfears.
With better treatment and greater public awareness, research
in cancer treatment began in earnest. In 1937, the National
Cancer Institute was created in the United States as the first of the
National Institutes of Health. In 1948, Sidney Farber, a pathologist
at Childrens Hospital Boston, reported the first temporary remis-
sions of childhood acute leukemia with aminopterin, followed by
the early responses of Hodgkins disease to nitrogen mustard. 2
This began an active and highly successful search for new che-
motherapeutic drugs. Thus, chemotherapy was added as the third
treatment modality, combined with increasingly more effective
surgery and radiation.
The introduction of chemotherapy dramatically altered the out-
come for several previously fatal tumors of children and young
adults, notably childhood acute lymphocytic leukemia, testicular
cancer, and Hodgkins disease. E. Donnall Thomas, in the late
1950s, performed the first bone marrow transplant, which involved
identical twins, one of whom had leukemia.4 These cures in the
1960s, of previously fatal cancers, did much to encourage research
and increase the publics optimism about cancer treatment.
This period coincided with the awakening of concerns about
the importance of patients right to know their diagnoses and
treatment options, as well as to participate in decisions about
Figure I.1 Early twentieth-century warning signs about cancer.
Figure I.2 Early twentieth-century warning signs about cancer.
xxviii introduction
their treatment. As research in cancer progressed, and revelations
of the postWorld War II Nuremberg Trials disclosed experi-
mentation on humans without consent, attention was directed
toward the ethical conduct of research and the need for patients
informed consent to participate in clinical trials. These issues led
to the promulgation of federal guidelines in the United States for
research on human subjects. The era of social upheaval in the
United States (1960s1970s) contributed to greater concern about
patients rights, particularly in relation to breast cancer. Greater
attention began to be paid to communication between doctor and
patient, and the need for shared decision-making. The earliest
studies were conducted by Darius Razavi in Belgium and Leslie
Fallowfield and others in the United Kingdom; these were fol-
lowed by more worldwide attention to the importance of empathic
communication with patients.
During the postWorld War II years, the only formal psy-
chological support for cancer patients in the United States was
through the American Cancer Societys visitor programs. 3
Patients who had had a laryngectomy or colostomy were asked
to speak with patients who feared undergoing these frightening
and disablingyet often curativeprocedures. Self-help groups
were formed by patients as laryngectomy and ostomy clubs. These
were followed by the worldwide Reach to Recovery, started in
the 1950s by the American Cancer Society as a program in which
women who had had a mastectomy, usually radical in those days,
visited women in the postoperative period. Make Today Count
was a grassroots self-help organization with many chapters. The
National Coalition of Cancer Survivors (NCCS) became an out-
spoken advocacy group for the early cancer survivors.
Despite widespread endorsement by patients, these organiza-
tions had an uphill battle to gain acceptance by physicians who
were fearful of a negative impact. The strong bias against encour-
aging patients to talk with one another continued into the last
quarter of the twentieth century, when experience began to show
that the benefits of social support far outweighed therisks.
Table I.1 outlines the major advances by decade in cancer medi-
cine since 1800 and the associated supportive, psychiatric, and
psychosocial aspects. Readers who are interested in the historical
details of cancer medicine and the social attitudes associated with
it are referred to Shimkin,2 Patterson,5 and Holland.6
ATTITUDINAL BARRIERS:ATTITUDES
RELATED TO PSYCHOSOCIALISSUES
The centuries-old stigma attached to mental illness had a pro-
found impact on developing psychological care for medically ill
patients, despite the extreme difference between mental and medi-
cal illness. As it was with cancer, mental illness had no known
cause or cure for centuries. It was as feared as cancer, and often
was assumed to be caused by demonic possession. The person
with mental illness was blamed, ostracized, and even brutalized
in some societies.7,8
Worldwide, people with mental illness were removed from
society and put into facilities that, though called hospitals, were
more like prisons. In the United States, mentally ill patients and
their physicians (called alienists) were isolated in mental hospi-
tals geographically separate from general hospitals. By the latter
1800s, however, increased interest began to bring the treatment
of psychiatric patients into general medicine: psychiatric units
were placed in general hospitals, and physicians and medical stu-
dents were taught to recognize and treat psychiatric comorbidity
in patients with medical illness. The first such psychiatric ward
in a general hospital opened in Albany, NewYork, in 1902. Adolf
Meyer did much to bring the unifying concept of psychobiology
to the awareness of academic physicians. From his position as the
first Professor of Psychiatry at Johns Hopkins University, a post he
took up in 1910, he and his students had a major impact on medi-
cine, by encouraging treatment of the whole person, despite the
common hostile response to psychiatric consultation on medical
wards. His common-sense psychiatry and concept of psycho-
biology began to reduce stigma and encourage integration of the
psychological into general medicine.
In the 1930s, psychoanalysts from Europe began arriving in the
United States. This increased interest in psychological contribution
to several physical illnesses of uncertain cause, particularly rheu-
matoid arthritis, gastric ulcer, asthma, hypertension, and cancer.
In cancer, psychiatric research focused on patients with a specific
malignancy. These patients were then studied by a retrospective
life review to identify the emotional problems that might have had
a physiological impact and contributed to the development of can-
cer. Several studies published in Psychosomatic Medicine reflect
research methods and direction at the time. These studies were of
theoretical interest as to the etiology of cancer, but they were not
of interest to the general physicians caring for patients with cancer
at that time. The specialty of oncology had not yet evolved, and
cancer was viewed as an unlikely disease to give way to serious
scientific study. The disconnect between these early psychiatric
investigators and treating doctors led to a delay in collaborative
studies.
The early psychosomatic medicine movement branched into
two areas relevant to cancer: psychoneuroimmunology and
consultation-liaison psychiatry (presently called psychosomatic
medicine). The work of Robert Ader and Nicholas Cohen9 in
1975 reported a conditioned taste aversion, using saccharin as
the stimulus, that resulted in a conditioned immune response in
rats. The work in this area was important in fostering research
that contributed to the understanding of conditioned nausea and
vomiting as a learned response in patients undergoing cancer
chemotherapy.
Psychoneuroimmunology later developed new techniques that
tracked biological events and measured psychological phenom-
ena in a far more precise way. These techniques embodied George
Engels biopsychosocial model.10 This area continues to evolve
as translational research, exploring the impact of psychological,
social, and environmental factors on immune function.
The clinical arm of psychosomatic medicine was
consultation-liaison psychiatry, which, in terms of cancer, focused
on understanding the psychological burden of patients with can-
cer and the psychiatric comorbidities.
It is to Loma Feigenberg, psychiatrist at the Karolinska Institute
in Stockholm, to whom we owe the first known psychotherapy
with patients dying from cancer. In the 1950s, as an oncologist
and radiotherapist at the RadiumHemmet, he noted the scar-
city of studies on patients with advanced cancer and their psy-
chological responses. He then studied psychiatry and began to
talk with patients using a psychoanalytic approach. He made a
friendship contract with patients, in which he agreed to keep
the sessions confidential and to continue to work with them.
Table I.1 Major Advances in Cancer Medicine Since 1800 and the Associated Supportive, Psychiatric, and Psychosocial Aspects
Decade Events in Cancer Treatment
1800s Cancer=death
1850s Fatalistic attitudes, stigma attached
Introduction of anesthesia and antisepsis
1900s Successful removal of earlytumors
Radiation introduced as cancer treatment
1930s National Cancer Institute (NCI) and International Union
Against Cancer (UICC) formed in 1937
1940s Nitrogen mustards found to have an antitumor action
inlymphomas; remission of acute leukemia with
aminopterin
1950s Beginning of cancer chemotherapy; first cure of
choriocarcinoma by drugs alone (1951).
Debates begin about revealing diagnosis to patients.
1960s Combined modalities lead to first survivors of childhood
leukemia and Hodgkins disease.
First hospice in US(1964)
US Surgeon General relates tobacco to lung cancer.
1970s National Cancer Plan signed by President Nixon(1972)
First grants for cancer control and rehabilitation
Patients begin to be given their diagnosis; informed
consent for treatment protocols; increased patient
autonomy
Two cooperative groups, CALGB and EORTC,
establishedcommittees to study quality of life and
psychosocial issues.
1980s National Coalition of Cancer Survivors advocacygroup
New chemotherapy drugs; anti-emetics
Improved radiotherapy
Better education about pain management
Do Not Resuscitate Order (DNR) (1985)
1990s Identification of genetic basis of several cancer and gene
therapy
Immunological therapies (monoclonal antibody,
allogeneictransplants)
Improved radiotherapy
Laparoscopic surgery
NCI, Office of Cancer Survivorship (1996)
Advances in Psychological/Psychiatric Care
Stigma, shame, attached to having mental illness; major mental illness treated in
asylums isolated from general hospitals
Patients not told their cancer diagnosis, onlyfamily
Guilt associated with having cancer; fears of transmission
Public education campaigns to teach warning signs ofcancer
America Cancer Society (ACS) formed1913
Adolf Meyer encourages common-sense psychiatry, looking at whole person
and using a unity concept of psychobiology.
Units for psychiatric patients opened in general hospitals; beginning psychiatric
consultations on medical wards
First scientific study of acute grief by Lindemann(1944)
Diagnosis still not revealed to patients
Feinberg started first psychotherapy with patients with advanced cancer in
Stockholm; established the International Group for Study of Death, Dying
andGrief.
First publications on patients psychological responses to cancer and radical
surgery from Memorial Sloan Kettering Cancer Center and Massachusetts General
Hospital Finesinger
Biopsychosocial approach of Engel and his group in Rochester,NY
Dame Cecily Saunders, London, advocates training in palliative care and hospice.
Kubler-Ross in the US challenged taboo of not talking to dying patients about
death.
NCI supported first National Conference of Behavioral Investigators in
Cancer(1975)
Small groups of researchers in UK, Belgium, Sweden, Australia, and Canadaformed
EORTC, in Amsterdam, established quality of life outcome measures.
First full-time academic Psychiatry Service at Memorial Sloan Kettering Cancer
Center established(1977)
Psychosocial Collaborative Oncology Group (19761981) and Project Omega at
Massachusetts General Hospital (19771984)
1976 Clinical Trial group, Cancer and Leukemia Group B (CALGB) establish
Psychiatry Committee.
Project Omega, at Massachusetts General Hospital, conducted by Weisman and
Worden, to screen for distress in cancer patients.
ACS supported meetings to improve psychosocial research, sponsoring 4
conferences on research methods.
Wellness Community and Gildas Club, advocacy organizations, formed (Presently
Cancer Support Community)
British Psychosocial Oncology Society(1982)
International Psychosocial Oncology Society(1984)
American Psychosocial Oncology Society(1986)
Handbook of Psycho-Oncology published (1989), first text for the field
Research in psychological issues associated with genetic risk and testing
Greater use of psychosocial and behavioral interventions, especiallygroups
Psycho-Oncology, international journal, published(1992)
International Psycho-Oncology World Congresses (France 1992, Japan 1994,
Germany 1996, Australia2000)
Integrative/complementary therapies added by cancer centers
First Department of Psychiatry and Behavioral Sciences established in a cancer
center (MSKCC,1996)
Standards of care and clinical practice guidelines for psychosocial distress (1997)
National Cancer Centers Network (NCCN) (also in UK, Canada, and Australia)
(continued)
xxx introduction
Table I.1(Continued)
Decade Events in Cancer Treatment
2000s Stem cell transplants
Better diagnostic tools (PET, CTscans)
Genetic mutations are used to provide targeted therapy/
personalized medicine
2010 The American College of Surgeons COC new Standard 3.2
requires onsite Psychosocial Distress Screening Program
with referral to appropriate psychosocial care (2012).
Abbreviations:ACS=American Cancer Society; AOSW=Association of Oncology Work; APOS:American Psychosocial Oncology Society; ASCO=American Society of Clinical
Oncology; CALGB=Cancer and Leukemia Group B; CoC=Commission on Cancer, American College of Surgeons; EORTC=European Organisation for Research and Treatment
of Cancer; IOM=Institute of Medicine; IPOS=International Psycho-Oncology Society; MSKCC=Memorial Sloan Kettering Cancer Center; NCI=National Cancer Institute;
NCCN=National Comprehensive Cancer Network; ONS=Oncology Nursing Society; QOPI=quality oncology practice initiatives; IUCC=International Union Against Cancer;
WHO=World Health Organization.
His treatise, Terminal Care: A Method for Psychological Care
of Dying Patients, is a landmark.11 Feigenberg received the
first Distinguished Life Service Award from the International
Psycho-Oncology Society in 1987. He also founded the
International Work Group for Death, Dying and Bereavement
(IWG), an early beginning of thanatology.
Kurt Eissler in 195512 and Janice Norton in 196313 made detailed
and sensitive observations of their patients who, during psycho-
analysis, developed cancer. These fortuitous studies provided rich
information as to how patients coped with progressive stages of
illness and approachingdeath.
The first reports of psychological adaptation to cancer and
its treatment in the United States were made by the psychiatric
groups at the Massachusetts General Hospital and at Memorial
Sloan-Kettering Cancer Center. By 1955, these two centers had
published papers documenting psychological reactions to the rad-
ical surgery for gynecologic, colon, and breast cancer and reaction
to advanced disease.
Avery Weisman and William Worden, through Project Omega
at Massachusetts General Hospital in the 1980s, studied patients
responses to a diagnosis of cancer; they found that the early days
after diagnosis, the first 100 or so, are a period of existential
plight, when patients are concerned about life and death and are
worried about their physical symptoms. They also described the
importance of identifying patients with higher emotional distress
during this period, as they were more likely to fail to cope with
cancer and its ramifications.14 Ruth Abrams, a social worker at
the Massachusetts General Hospital and a member of Weisman
and Wordens team, contributed to these early observations, as did
Advances in Psychological/Psychiatric Care
APOS:20 lectures in English free on website (www.apos-society.org)
IPOS and European School of Oncology:website core curriculum in
psycho-oncology in 6 languages (www.ipos-spciety.org)
Institute of Medicine Report:Cancer Care for the Whole Patient:Meeting
Psychosocial Health Needs(2008)
Alliance for Improved Psychosocial Care formed(2009)
IPOS adopted the Quality Standard, with 23 national psycho-oncology societies,
that psychosocial care must be integrated into routine cancer care; distress should
the sixth vital sign (2009).
The International Union Against Cancer and its 72 affiliated organizations endorse
the IOM quality standard and distress as the sixth vitalsign.
APOS developed a report card for measuring quality of psychosocial care in
oncology practices (now a part of QOPI core standards through ASCO (2011).
The White Paper, written by APOS, AOSW, and ONS, outlines the guidelines for
cancer centers to meet CoC accreditation requirements (2014).
Publication of several evidence-based psychotherapies for patients withcancer
IPOS receives WHO nongovernmental organization memberstatus
Through UICC, IPOS has a role in non-communicable disease (NCDs) policy
management through United Nations.
other social workers who provided the first psychosocial services
to patients with cancer.
The early contributions of nurses at the bedside must be rec-
ognized. They intuitively provided psychological support and
later were increasingly trained in psychosocial care and guided
by behavioral nursing researchers, such as Jeanne Quint Benoliel.
Benoliel, who was involved with Feigenbergs IWG, studied dying
patients and, in 1961 with NIH funds, studied the process of wom-
ens adjustment following radical mastectomy. Benoliel trained a
second generation of psychosocial nurse researchers, represented
by Ruth McCorkle.
Another early area of psychological intervention occurred in
the 1960s, when the first debates began in this country about the
wisdom of never revealing the diagnosis of cancer to the patient.
Psychiatrists were active as participants (on the do tell side) of
these lively debates with oncologists, who were often on the never
tell side. In a survey by Oken in 1961,15 more than 90% of physi-
cians in this country did not reveal the diagnosis to the patient.
The argument that many people preferred to know the truth
and that more harm was done by telling a lie became persuasive.
A1978 survey, which asked the same questions, showed that 97%
of the doctors in the same geographic area told patients their can-
cer diagnosis.16 Over the course of those intervening 17 years,
the publics knowledge about cancer increased, and several of the
same cancers were now curable.17
Another factor in the 1960s was new attention, beginning in the
United Kingdom, given to palliative and end-of-life care, started
by Dame Cecily Saunders in London. Similar concerns were
developing in Canada, Australia, and the United States, where

in the 1950s John Bonica, an anesthesiologist at the University
of Washington, wrote about the management of cancer pain.18
In the 1970s, he developed a multidisciplinary center to study
pain, and in the 1980s Kathleen Foley, a neurologist at Memorial
Sloan-Kettering Cancer Center, developed a clinical research and
training program in pain management.19 In the 2000s, she led an
international team that developed a global public health strategy
for palliative care endorsed by the World Health Organization.20
The need for better pain and symptom control and a more com-
passionate response to dying patients became evident. In the
United States, Elizabeth Kubler-Ross galvanized both public and
medical attention to recognize dying patients isolation and their
need to talk with their doctor and nurse about their concerns.21
THANATOLOGY
The period from the 1950s to the 1980s saw the beginning of con-
cerns for the psychological state of dying patients. This had pre-
viously been considered the domain of family and clergy, with
physicians often avoiding involvement with patients emotional
care. The concerns with the poorly controlled physical symptoms,
especially pain, began to be addressed, and the emotional exis-
tential crisis of dying patients was finally acknowledged; this area
of scientific inquiry was called thanatology. This history is inter-
woven with psycho-oncology because the patients studied were
most often those with cancer. Early psychological studies with
patients with advanced cancer contributed to the field of thanatol-
ogy. The movement in the United States was led by psychologist
Edwin S.Shneidman and issues around dying, death, and bereave-
ment emerged, exploring sociological, psychological, and cul-
tural aspects. Loma Feigenbergs psychotherapy in Sweden, Avery
Weisman and Nillin Nordins Existential Plight studies, and
Cecily Saunderss work in London, while viewed as part of thana-
tology, set the stage for the development of palliative care as a disci-
pline within medicine. Colin Parkss work on grief, as well as Erich
Lindemanns first scientific report on acute grief, contributed to
greater concern for the emotional pain of grief of family members.
FORMAL BEGINNING OF
PSYCHO-ONCOLOGY
The subspecialty of psycho-oncology began formally around the
mid-1970s in the United States, related to three social changes.
First, the public felt a greater sense of optimism about cancer,
due principally to the presence of increasing numbers of cancer
survivors, who were no longer afraid to announce their diagno-
sis and recovery. Second, celebrities and public figures began to
reveal both their diagnoses and treatment. In 1975, Betty Ford
and Happy Rockefeller, both major national figures, spoke pub-
licly about their breast cancer. Third, there was a surge of powerful
social movements championing human rights, including those of
patients. Cancer came out of the closet, and the door opened for
exploration of the psychological dimension of cancer.
In Europe, a small group of psychosocial investigators at the
Kings College Medical School established a research unit in 1971.
Their early work examined women with breast cancer, in which
they explored factors in survival and developed one of the first
quantitative scales to measure psychological aspects of coping.
David Greer and Maggie Watson moved to the Royal Marsden
Hospital in 1986, where they continued their psychological
introduction xxxi
research and helped to establish the British Psychosocial Oncology
Society in 1982. In 1976 in the Netherlands, Fritz Van Dam devel-
oped the first psychosocial research unit in Amsterdam. His pio-
neering work led to the first measurement tools for quality of life
and psychological variables in the European Organization for
Research and Training in Cancer (EORTC) cooperative clinical
trials group. He, with Neil Aaronson, developed and validated a
multi-language quality of life scale and has contributed to out-
comes in clinical trials.
Darius Razavi in Belgium provided early studies of doctor-patient
communication and interventions to reduce patients distress.
Marget van Kerekjarto in Hamburg was an early contributor
to international collaborations, as well as Christina Boland at
Karolinska and Kati Muszbek in Budapest. In Australia, the impe-
tus for the growth of psycho-oncology came from a strong behav-
ioral cancer prevention effort in smoking cessation, sunscreen
protection, and screening for melanoma. In addition, they devel-
oped early clinical practice guidelines for psychosocial and pal-
liative care (see Chapter102 on international psycho-oncology).
Developments in the United States
In 1975, a small group of clinical investigators gathered for the first
national research conference on psycho-oncology in San Antonio,
Texas,23 organized by Bernard Fox, an early advocate and men-
tor who sought the highest quality of psychosocial research. The
meeting resulted from the 1972 War on Cancer Act by President
Nixon, which established the Division of Cancer Control and
Rehabilitation (DCCR), directed by Diane Fink. It became pos-
sible to apply for federal grant support through this division
for supportive care research. Joseph Cullen, senior editor of the
monograph from the meeting,noted:
Cancer is a complex, chronic disease, which has an impact upon the
potential and actual patient, the patients family, multiple health care
professionals and society as a whole. In addition to its purely medi-
cal dimension, there are also behavioral dimensions. Consequently,
in the mission of the DCCR, attention is being paid to the social,
economic and psychological impact of the disease upon society in
general and the patient and his family in particular. Since informa-
tion relating to the behavioral aspects of cancer is scarce and cer-
tainly not available as a unified resource, it was imperative for those
responsible to promote an interaction between behaviorists and
other health professional who deal with cancer and cancer patients
on a daily basis. To accomplish this goal the DCCR held a confer-
ence in San Antonio in January of 1975 on Cancer Control and the
Behavioral Sciences.23
The 25 colleagues who attended the San Antonio meeting noted
the major barrier posed by the lack of valid quantitative instru-
ments to measure subjective symptoms such as pain, anxiety,
and depression. Instruments designed for the study of physically
healthy patients with psychiatric disorders were not calibrated to
measure these lesser and different forms of distress in the medi-
cally ill. The American Cancer Society sponsored several research
conferences and set up peer-review for psychosocial research in
the 1980s to help develop research and tools to measure subjective
symptoms previously assumed to be unmeasurable. McCorkles
Symptom Distress Scale, developed in 1978, was among the first
instruments to measure the subjective symptoms of patients
with cancer. 24 The Brief Symptom Inventory (BSI), devel-
oped by Leonard Derogatis, was a widely used scale to measure
xxxii introduction
psychological symptoms.25 Russell Portenoy and colleagues devel-
oped the Memorial Symptom Assessment Scale, which measured
physical and mental symptoms.26
Simultaneously, in 1976 in the United States, an NCI-supported
national clinical trials group, the Cancer and Leukemia Group
B (CALGB), was mandated to become multidisciplinary, which
was assumed to mean the addition of surgery and radiotherapy
to medical oncology, which had alone conducted trials in the
past. James Holland, pioneer oncologist, and husband of Jimmie
Holland, was Chair of the large multicenter trials group, the
Cancer and Leukemia Group B (CALGB). Given the opportu-
nity to apply benign nepotism, a Psychiatry Committee was
added as one of the new disciplines in 1976, with Jimmie Holland
serving as Chair. This created the opportunity for psychosocial
researchers to participate in cutting-edge cancer research with
key investigators, enabling researchers to ask the first questions
about psychosocial outcomes. David Cellas contribution to qual-
ity of life research through his extensive instrument development
began in the CALGB. Today, outcomes research and use of patient
reported outcomes (PROs) are part of accepted practice. The first
quality of life studies of early survivors of Hodgkins disease and
leukemia who were treated by protocol came from this group. The
use of a centralized interviewer to collect CALGB psychosocial
data by telephone improved quality and reduced missing data
points, which were common when patients were interviewed in
busy clinics.22
The psychiatric group at Memorial Sloan-Kettering was
re-established in 1977 as the first (and still the largest) full-time
academic psychiatric program in a cancer center, providing
clinical services and a postgraduate clinical and research train-
ing program for psychiatrists and psychologists. Jimmie Holland
was appointed Chief of the newly established Psychiatry Service
within the Department of Neurology. The beginning group, which
included Marguerite Lederberg, Mary Jane Massie, and William
Breitbart, quickly recognized the need for education in this new
area for oncologists, nurses, chaplains, psychiatrists, and psychol-
ogists. They began to organize conferences in the early 1980s at
Memorial, which were increasingly larger and were attended by
more professionals from other countries. The first such organized
group, though small, recognized the need to develop national and
international educational programs. Conferences began in 1982
and continued through the 1990s. The conferences served as the
base from which the American and International Psychosocial
Oncology Societies developed. The establishment of the American
Psychosocial Oncology Society (APOS) began during that time in
1986 as a group within the Academy of Psychosomatic Medicine.
However, as it became multidisciplinary to accommodate the wide
range of disciplines in psychosocial oncology, it became indepen-
dent from the Academy, which comprised largely consultation
liaison psychiatrists.
It is important to point out some of the barriers that had to be
overcome to the highly successful model at Memorial. Achieving
full institutional status was essential to have psycho-oncology
recognized as a separate (and equal) discipline. This was achieved
only in 1995 after two academic reviews, which led to the estab-
lishment of the Department of Psychiatry and Behavioral Sciences,
with Jimmie Holland as Chairman. She received the first endowed
chapter for psycho-oncology. Both developments began to give
credibility to psycho-oncology and led to similar steps being
taken at US comprehensive cancer centers and in other countries.
The group has continued to serve as a major force for national
and international development of psycho-oncology through its
research agenda and its extensive training program. The program
has trained over 350 professionals, many of whom are major con-
tributors today to research and clinical work in thefield.
By the mid-1970s, the prevalence of common comorbid psy-
chiatric disorders was reported by the Psychosocial Collaborative
Oncology Group (PSYCOG), chaired by Arthur Schmale from the
George Engel group in Rochester. Forty-seven percent of patients
had evidence of distress using the Brief Symptom Inventory by
Leonard Derogatis. Studies began to document the frequency of
depression by site and stage of cancer; the causes, course, and
management of delirium; the common causes of anxiety; the
relationship of distress to the presence of pain; and the impact
of cancer treatment on cognitive functioning. Also in the 1970s,
Shirley Lansky and other child psychiatrists began to describe and
study the psychosocial concerns of children with cancer and of
childhood survivors.27 Controlled clinical trials were reported of
psychosocial and psychopharmacologic interventions. The oppor-
tunity for teaching oncology staff about these issues increased
as a curriculum became available for use in teaching rounds,
in-service workshops, and national conferences. Group sessions
for doctors and nurses explored countertransference, staff-patient
communication, and the impact of stress on oncology staff.28 The
research in and training of doctors and nurses in communication
skills grew exponentially with major contributions in the United
Kingdom, Australia, Canada, and the United States, with experi-
ential learning emerging as an importanttool.
The behavioral medicine movement in the United States began
around the late 1970s and brought a second wave of researchers to
the psychosocial and behavioral aspects of cancer. Health psychol-
ogists brought a new and valuable dimension to this research:the-
oretical models of effective coping; cognitive behavioral models
of psychological interventions; valid assessment instruments for
measured subjective symptoms; and behavioral interventions to
change lifestyle habits, such as smoking, sun exposure, diet, and
exercise.
Several quality-of-life scales were developed in the early 1980s,
to provide outcome measures in cancer clinical trials.29,30 N.K.
Aaronson 29 in Europe (European Organization for Research and
Training in Cancer; EORTC) and David Cella, mentioned ear-
lier,30 in the United States developed extensively used scales com-
prising core questions with modules to apply to specific tumor
sites. Evaluation of a new drug or cancer treatment today assesses
not only impact on length of survival and disease-free interval but
also quality of life as a quantifiable outcome measure. Arange of
valid instruments is available to the researcher in cancer today to
measure symptoms and coping.
Awareness of the spiritual dimension in coping with cancer led
to collaborative efforts with pastoral counselors and researchers.31
Scales to measure patients spiritual beliefs and reliance on them
in coping with cancer developed, as well as spiritual assessment
tools for clinicians. Arange of psychological interventions, many
with a spiritual component, has been developed for patients near
end oflife.
The 1990s saw the growing insistence of patients to be proac-
tive in their own care. Patients began to use a range of therapies
to help them in coping, as a complementary therapy to the cancer

treatment. Acupuncture, meditation, relaxation, art and music ther-
apy, as well as writing, have all proved helpful. These adjuncts are
widely available in most cancer centers today. Barrie Cassileth led
the early research that separated legitimate complementary inter-
ventions from alternative cancer therapies by conducting clinical
trials of holistic remedies. She developed the respected Integrative
Medicine Service at Memorial Sloan Kettering in the 2000s, which
provides valid information about herbs, supplements, anddiets.
INTERNATIONAL PSYCHO-ONCOLOGY
SOCIETY
In 1984, it became clear that the small groups of investigators in
different parts of the world needed to network with others. The
International Psycho-Oncology Society (IPOS) was established
to meet this need. Jimmie Holland was founding president, with
50 founding members from 17 countries. It held early World
Congresses in Beaune, France; Kobe, Japan; Hamburg, Germany;
NewYork and Melbourne. With the help of the European School
of Oncology, IPOS established a free online curriculum in eight
languages. The Society continues to sponsor workshops and pro-
fessional education worldwide, with particular attention to under-
served areas. It serves as the oversight organization to connect 25
national psychosocial societies through a federation. Worldwide,
members represent around 6000 clinicians and investigators
working in psychosocial aspects of cancer. IPOS is a member
organization of the International Union Against Cancer (UICC),
and it became a member of WHO in2014.
The first collection of the information available in psycho-oncology
was described in the edited Handbook of Psycho-Oncology, pub-
lished by Oxford University Press in 1989. The first edition of the
Oxford textbook Psycho-Oncology was published in 1998, and the
second edition in 2010 with a multi-editorship.32 The international
journal Psycho-Oncology, co-edited by Maggie Watson and Jimmie
Holland, began publication in 1992 to provide a single journal to
report research in the psychological, social, and behavioral dimen-
sions of cancer, which previously could only be found across a
range of journals. Over 20years, the journal has flourished, and
has a present impact factor of 3.5 with credibility in both the psy-
chological and oncological community.
QUALITY STANDARDS FOR
PSYCHOSOCIAL OF CARE AND
CLINICALPRACTICE GUIDELINES
Two pivotal events occurred in the past two decades that have
given policy support to improved psychosocial care. In 1997, the
National Comprehensive Cancer Network (NCCN), an organi-
zation of the comprehensive cancer centers, established a multi-
disciplinary panel to explore why the psychosocial domain was
difficult to integrate into routine care. The panel identified a key
problem:oncologists and patients did not like to use stigmatizing
words that suggested a psychiatric or mental problem. The panel
suggested the word distress as a substitute, which normalized
patients emotions and was not viewed as embarrassing. Arapid
screening tool, the Distress Thermometer, was chosen. The Distress
Thermometer uses a 010 scale, similar to that used successfully
to measure pain. The NCCN panel chose the word distress as
acceptable, applicable, and encompassing, without considering its
introduction xxxiii
previous use. Recent research reveals that the use of the word for
mental aspects of existential concerns was first reported by J.M.
Hinton in the United Kingdom in 1962 in a paper on the physi-
cal and mental distress of the dying. Jeanne Benoliel and Ruth
McCorkle brought the term to the United States. However, Mark
Lazenby noted the term was used much earlier by William James
in his Varieties of Religious Experience in 1901, in a reference to
emotional and spiritual concerns, and by Osler (1906) to describe
dying patients mental apprehension.
The term was also chosen by Avery Weisman and William
Worden in their Project Omega studies at Massachusetts General
Hospital in the 1980s. They conducted the first studies to prospec-
tively assess patients vulnerability to poor psychological coping.
Using a combination of sociodemographic factors and interview,
they derived a Distress Scale, which they used to identify patients
who needed interventions. They in fact showed that patients who
received psychotherapy during the first 100days of diagnosis had
less distress three months later than a control non-intervention
group. It is ironic that it took 30years to bring this early screening
model back as we have developed screening and triage programs
that will in 2015 be required in all cancer centers as part of accred-
itation (see Chapter100 by Wagner and Pearman).
The term distress has proved acceptable to patients, and stud-
ies have found that a score of 4 or greater is the algorithm to trig-
ger further evaluation by the oncologist or nurse who determines
what referral resource is needed.3335 The NCCN panel from 1997
wrote the first clinical practice guidelines for distress manage-
ment in the United States, which continue to be updated annually.
In Australia, Canada, and the United Kingdom, similar
evidence-based clinical practice guidelines have been developed.
In Canada, the Cancer Advocacy Council made distress the
sixth vital sign after pain, assuring that assessing for distress is a
part of routinecare.
The second seminal event affecting policy in regard to psycho-
social care was the 2008 Institute of Medicine (IOM) Report. 36
The report came from a 16-member committee charged with
exploring the complaints of patients with cancer that there
were barriers to receiving adequate psychosocial care. The
report of the Institute of Medicine, Cancer Care for the Whole
Patient:Meeting Psychosocial Health Needs, is a landmark study
because it confirms that there is a sufficient evidence base for
psychological, psychiatric, psychosocial, and psychopharmaco-
logic interventions, and it asserts that these interventions must
be available to patients. 36 The standard mandated by the IOM is
the following:
Quality cancer care today demands that the psychosocial needs of
patients be integrated into routine cancercare.
This major policy quality standard was supported by the
Alliance for Improved Psychosocial Care, formed to assure that
the standard is implemented. A further ripple effect occurred
when IPOS, and 23 of its national societies, as well as the Union
for International Cancer Control (UICC), and 72 affiliated orga-
nizations, endorsed the standard. A worldwide enthusiasm has
resulted for improved psychosocial care. Asuggestion has been
made to the United Nations Non-Communicable Disease forum
that this quality standard would apply equally well to the care of
patients with chronic diseases, such as heart disease, stroke, and
diabetes.
xxxiv introduction
The third policy change that has positively impacted psychoso-
cial care of patients with cancer is the 2012 action of the American
College of Surgeons, through its Commission on Cancer, which
accredits the 1500 community cancer centers in the United States.
It approved a new quality standard indicating that by 2015, all
cancer centers must have an onsite program to identify patients
with distress and to triage them to appropriate resources for
treatment. Guidelines for implementation have been written by
the American Psychosocial Oncology Society (APOS), Oncology
Nursing Society (ONS), and Association Oncology Social Workers
(AOSW) joint statement.
IMPLEMENTATION OF STANDARDS
OFCARE
However, standards of care and guidelines are not of practical value
unless they are applied to everyday clinical practice:the secret is
in the implementation of the standards. How to accomplish this
difficult task is now addressed through dissemination and imple-
mentation science. This is the task confronting psycho-oncology
as this textbook is published. This new impetus has similarly been
introduced in the United Kingdom, Canada, and Australia, where
a stepped psychosocial care model isused.
The training of psycho-oncologists and the encouragement
of young clinicians and investigators into the field remain criti-
cally important to address clinical and research needs worldwide.
Trainees from psychiatry are needed in psycho-oncology, particu-
larly in palliative care, symptom control, and survivorship, which
is growing rapidly as the number of cancer survivors increases.
Health psychologists are needed, especially in cancer prevention,
early detection, genetic testing, and the emerging field of psycho-
neuroimmunology, in which the possible links to cancer risk and
survival are being explored. This pool of investigators is small, and
funding limits jeopardize this area of research.
SUMMARY
There is now a science of psychosocial oncology care. This sci-
ence is based on a strong research. There are now evidence-based
psychosocial and pharmacologic (described in chapters to follow)
interventions for patients with cancer. There are now new insights
into the care of and support for survivors; attention is being paid
to the special problems of children and elders, to caregiver bur-
den, and to grief and bereavement.
Psycho-oncology is almost 40 years old, and much progress
has been made in that short time. The discipline has an accepted
place in the oncologic, psychological, and psychiatric community,
both in clinical care and in research. Worldwide implementation
of what we now know could greatly improve the psychological
well-being and quality of life of patients with cancer. Ascience of
care now joins the science of cancer to improve the experience
of patients in the future.
REFERENCES
1. Tolstoy L. The Death of Ivan Ilyich. In:Maude L, Maude A, trans.
Great Short Works of Leo Tolstoy. NewYork:Harper & Row; 1967.
Original work published1886.
2. Shimkin M. Contrary to Nature. NIH Publication No. 76-729.
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Public Health Service;1977.
3. American Cancer Society. Fact Book for the Medical and Related
Professional. NewYork:American Cancer Society;1980.
4. Mathe G, Thomas ED, Ferrebee JW. The restoration of marrow func-
tion after lethal irradiation in man:a review. Transplan Bull. 1959
Oct;6:407409.
5. Patterson J. The Dread Disease:Cancer and Modern American
Culture. Cambridge, MA:Harvard University Press;1987.
6. Holland JC, Rowland J, eds. Handbook of Psycho-Oncology.
NewYork:Oxford University Press;1989.
7. Fabrega H Jr. Psychiatric stigma in the classical and medieval
period:a review of the literature. Compr Psychiat. 1990;31:289306.
8. Fabrega H Jr. The culture and history of psychiatric stigma in early
modern and modern western societies:a review of recent literature.
Compr Psychiat. 1991;32:97119.
9. Ader R, Cohen N. Behaviorally conditioned immunosuppression.
Psychosom Med. 1975 July 1;37(4):333340.
10. Engel G. The biopsychosocial model and medical education:who are
to be the teachers? N Engl J Med. 1982;306:802805.
11. Feigenberg L. Terminal Care:Friendship Contracts with Dying Cancer
Patients. NewYork:Brunner/Mazel;1980.
12. Eissler KR. The Psychiatrist and the Dying Patient.
NewYork:International Universities Press;1955.
13. Norton J. Treatment of a dying patient. Psychoanal Study Child.
1963;18:541560.
14. Weisman AD, Worden JW. The existential plight in cancer:signifi-
cance of the first 100days. Int J Psychiat Med. 1976;7(1):115.
15. Oken D. What to tell cancer patients:a study of medical attitudes.
JAMA. 1961;175:11201128.
16. Novack DH, Plumer R, Smith RL, Ochitill H, Morrow GR, Bennett
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17. Holland JC, Geary N, Marchini A, Tross S. An international survey
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21. Kubler-Ross E. On Death and Dying. NewYork:Macmillan;1969.
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Cancer and Leukemia Group B:the telephone interview, conceptual
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23. Cullen JW, Fox BH, Isom RN, editors. Cancer:The Behavioral
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introduction xxxv
35. Jacobsen D, Trask, Fleishman, Zabora, Baker, and Holland J.
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 SECTION I

Behavioral and
Psychological Factors
in Cancer Risk

1 Tobacco Use and Cessation 3 4 Sun Exposure and Cancer Risk 22

Thomas H.Brandon, Marina Unrod, and Anne E.Cust, Afaf Girgis, and Bruce K.Armstrong
Vani N.Simmons
5 A Psychosocial Perspective on Socioeconomic
2 Diet and Cancer 8 Disparities in Cancer 28
Marian L.Fitzgibbon, Melinda R.Stolley,and Sara Fernandes-Taylor and Joan R.Bloom
Lisa Tussing-Humphreys
6 Psychosocial Factors 35
3 Physical Activity and Cancer 15 Christoffer Johansen
Christine M.Friedenreich, HeatherK.Neilson,
and Darren M.R. Brenner
 CHAPTER1
Tobacco Use and Cessation
Thomas H.Brandon, Marina Unrod,and
Vani N. Simmons
TOBACCO AND CANCER
Each year over 160,000 Americans die of cancer caused by tobacco
smoking.1 Smoking is responsible for at least 30% of all cancer
deaths. It accounts for 87% of all lung cancer mortalities, and also
contributes significantly to mortality rates for oral cancer, as well
as cancers of the esophagus, larynx, bladder, stomach, pancreas,
kidney, and cervix. In addition to cancer, smoking contributes
significantly to coronary heart disease, chronic obstructive pul-
monary disease, cardiovascular disease, stroke, and ulcer disease.
Indeed, about 20% of all deaths in the United States can be attrib-
uted to smoking.1 From the individual perspective, a given smoker
has about a 50% chance of dying from smoking, with the average
smoker living 10years less than a nonsmoker.2 Use of smokeless
tobacco (chew, snuff) is also associated with an increased risk of
oral cancer and premature death. But because tobacco smoking
has much higher prevalence, as well as relative risk, 3 this chapter
will focus on smoking. Nevertheless, patients should be advised to
cease all forms of tobacco use.
Smoking cessation is associated with decreased mortality and
morbidity from cancer and other diseases. Stopping smoking at
age 30 restores nine years of life expectancy, whereas stopping
at age 60 still restores an expected three years of life, compared
to continuing to smoke.2 Although quitting smoking does not
appear to reduce the absolute risk of lung cancer, it significantly
retards the steeply increasing risk associated with continued
smoking.4 Thus, great potential for cancer prevention lies with
making efforts toward long-term cessation of smoking. In this
chapter, we begin by reviewing the evidence-based treatments for
tobacco use and dependence, emphasizing primarily qualitative
and meta-analytic reviews. We draw upon the 2008 update of the
US Public Health Services Clinical Practice Guideline, Treating
Tobacco Use and Dependence,5 which is based on a review of 8700
research articles, with treatment recommendations derived from
meta-analyses of most treatment modalities. We then discuss spe-
cial issues of relevance for treating cancer patients.
TREATMENT OF TOBACCO USE
ANDDEPENDENCE
Tobacco dependence has multiple motivational influences within
and across individual smokers. 6 Among these are physical
dependence on nicotine, operant and classical conditioning pro-
cesses, environmental and social factors, cognitive expectancies
about the benefits of smoking, and desire for weight control. Given
the complexity of the factors influencing smoking, it is not surpris-
ing that single treatment approaches have limited success, with
the best long-term outcomes obtained from multimodal treat-
ments. In this section, we review pharmacological interventions,
followed by social/behavioral interventions, broadly defined, and
finally discuss combination treatments.
Pharmacotherapy
Currently, there are seven pharmacotherapies approved by the
US Food and Drug Administration (FDA) for smoking cessa-
tion. All of these medications have been found to approximately
double the odds of long-term abstinence (with one, varenicline,
tripling the odds), and the Clinical Practice Guideline recom-
mends that pharmacotherapy be routinely offered to smokers
attempting to quit. 5 The first-line pharmacotherapies are sum-
marized in Table 1.1.
Nicotine Replacement Therapies
Nicotine replacement therapy (NRT) aids smoking cessation by
partially replacing plasma nicotine levels, thereby reducing symp-
toms of nicotine withdrawal (e.g., craving, depression, irritability,
difficulty concentrating) and possibly reducing the reinforcement
derived from any cigarettes smoked. Five types of NRT have FDA
approval: chewing gum, transdermal patch, intranasal spray,
inhaler device, and lozenge. In general, NRT is used during the
first 812 weeks of abstinence, when nicotine withdrawal symp-
toms are greatest. Of the five NRT delivery methods, the nicotine
nasal spray reaches its peak concentration most rapidly, whereas
the transdermal patch provides the slowest, but most consistent,
serum nicotine levels over the course of a day.
Meta-analyses indicate roughly equivalent efficacies for the five
NRT products, with odds ratios ranging from 1.5 (for nicotine
gum) to 2.3 (for nasal spray) compared to placebo. 5 Estimated
six-month abstinence rates are approximately 20%25%. Each
product is associated with specific contraindications and cautions,
primarily related to its particular mode of drug delivery. Because
NRT delivers nicotine without the harmful byproducts of smoked
tobacco, it is considered a far safer alternative to smoking. The
safety of NRT during pregnancy has not been established.
4 Section I behavioral and psychological factors in cancer risk

Table1.1 FDA-Approved Pharmacotherapies reinforcing effects of smoking, including perceived satisfaction.8

Similar to bupropion, varenicline use should be initiated 1 week
Medication Availability Dosage Duration before the target quit date. Current evidence suggests that it has
outperformed bupropion in head-to-head studies, and is the most
Nicotine OTC <25 cpd:2 mg; up to 12 wks
gum 25cpd:4 mg
effective of the smoking cessation medications, with an average
odds ratio of 3.1, producing 33% abstinence.5
Nicotine OTC 21 mg/4 wks; 14 mg/2 8 wks The main adverse effect of varenicline is mild to moderate nau-
patch wks; 7 mg/2 wks sea. However, because of anecdotal postmarketing reports, prod-
Nicotine Prescription 12 sprays/hr, up to 36 mos uct labeling indicates that patients should stop taking varenicline
nasalspray 40doses daily and contact their healthcare provider immediately if agitation,
Nicotine Prescription 616 cartridges/day Up to 6 mos depressed mood, or changes in behavior that are not typical for
inhaler them are observed, or if they develop suicidal ideation or suicidal
thoughts. In addition, there is some evidence that varenicline may
Nicotine OTC 2 mg and 4 mg Up to 12 wks
lozenge increase the risk of major cardiovascular events. Varenicline is not
Use up to 20 pieces/day
approved for use with pregnant women.
Bupropion Prescription 150 mg/day for 3days, Up to 12 wks
SR then 150 mg twice daily (maintenance up Combination Pharmacotherapies
to 6 mos) Recent research has tested the efficacy of combining different
Varenicline Prescription 0.5 mg/day for 3days; Up to 12 wks
forms of pharmacotherapy. The general model has been to com-
0.5 mg twice daily for (maintenance up bine a long-acting, relatively stable medication, such as the nico-
4days; 1 mg twice daily to 3 mos) tine patch, with a shorter acting medication that can be used ad
thereafter libitum. In this manner, both tonic and phasic nicotine cravings
and withdrawal symptoms can be addressed. The combination
Abbreviations:FDA, Food and Drug Administration; OTC, Over-the-counter.
of nicotine patch with gum, nasal spray, or inhaler has evidence
Adapted from Fiore MC, Jan CR, Baker TB, etal. Treating Tobacco Use and
of significant efficacy, as does the combination of the patch and
Dependence:2008 Update. Clinical Practice Guideline. Rockville, MD:US Department of
Health and Human Services, Public Health Service; May 2008. bupropion SR.5

Bupropion SR (Zyban)
Bupropion was the first non-nicotine medication to be approved
by the FDA for treating tobacco dependence. Also marketed as an
atypical antidepressant (Wellbutrin), bupropion doubles tobacco
abstinence rates compared to placebo, with an average odds ratio
of 2.0, and an abstinence rate of approximately 24%.5 It attenu-
ates nicotine withdrawal and cigarette cravings, and can reduce
postcessation weight gain. Bupropions mechanism of action is not
fully understood, but it appears to inhibit the neuronal reuptake
of dopamine and norepinephrinekey neurotransmitters in the
maintenance of nicotine dependence.7 It may also have antagonis-
tic effects on nicotinic receptors, attenuating perceived satisfac-
tion from smoking.
To reach steady-state blood levels before quitting smoking, the
smoker should begin using bupropion SR one week before the tar-
get quit date. Contraindications include a history of seizure disor-
ders or factors known to increase the risk of seizures (e.g., bulimia
or anorexia nervosa, serious head trauma, alcoholism) and con-
comitant use of monoamine oxidase (MAO) inhibitors. Product
labeling also indicates that patients should discontinue bupropion
and contact their healthcare provider immediately if agitation,
depressed mood, or changes in behavior that are not typical for
them are observed, or if they develop suicidal ideation or suicidal
thoughts. The safety of bupropion during pregnancy has not been
established.
Varenicline (Chantix)
Varenicline is the most recently approved pharmacotherapy for
treating nicotine dependence. It is an orally administered par-
tial agonist of 42 nicotinic acetylcholine receptors (nAChRs).
Varenicline appears to reduce nicotine cravings and withdrawal
symptoms, and its agonistic properties appear to attenuate the
Social/Behavioral Treatments
The nonpharmacological therapies described in this section span
a wide range of intensity and duration, from minimal self-help
interventions to intensive individual counseling. Clinicians
should be aware of the availability of these options and should be
willing to refer patients for services that they are unable to provide
themselves.
Self-help
Self-help refers to materials that can be provided to smokers,
such as pamphlets, booklets, or audiovisual media. Their primary
advantages are low cost and ease of distribution. Unfortunately,
the efficacy of self-help materials appears to be quite limited, with
improved cessation rates of about 1% compared to no-treatment
controls.5 In contrast to the very modest efficacy of self-help
for smoking cessation, a meta-analysis concluded that self-help
interventions are the only empirically supported approach for
preventing smoking relapse.9 For instance, when self-help book-
lets were provided to smokers shortly after they quit smoking,
significant reduction in relapse was observed through 2 years
of follow-up, and this form of intervention appears to be highly
cost-effective.10,11
Telephone Quitlines
Smoking cessation quitlines are available throughout the United
States and most of the world. In the United States one number
(1-800-QUIT-NOW) serves as a central access point that auto-
matically routes calls to the appropriate state or federal quitline
service. Approximately 400,000 smokers in the United States are
served annually by state quitlines, with an average utilization rate
of about 1%.12
Quitline services differ in the amount and frequency of counsel-
ing offered, the provision of ancillary materials, referrals to local

smoking cessation agencies, the provision of free or subsidized
pharmacotherapies, and whether calls are proactive (call-out),
reactive (call-in), or both. Quitlines have the advantage of pro-
viding more personal and intensive help than self-help materials,
while also having greater potential reach than face-to-face coun-
seling. Meta-analyses show that quitlines are effective, with over-
all odds ratios of 1.41.6 compared to control conditions, which
translates into differential long-term abstinence rates of at least
3%5%.5
Brief Interventions
Healthcare providers have the opportunity to deliver relatively
brief face-to-face interventions. Meta-analyses have indicated
that physician advice increases abstinence rates by approximately
2.3%2.5%.5 Because 70% of smokers visit their physician each
year, the potential cumulative effect of even this small effect is
sizable. Moreover, there is a doseresponse relationship between
contact time and abstinence outcomes, with minimal counseling
(< 3 minutes) yielding 13.4% abstinence, low-intensity counsel-
ing (310 minutes) yielding 16.0%, and higher intensity counsel-
ing (> 10 minutes) yielding 22.1% abstinence. Abstinence rates
also increase with the number of counseling meetings and/or the
number of clinician types delivering the cessation messages.5
Intensive Interventions
The most intensive interventions tend to be multisession treat-
ments typically offered through smoking cessation clinics, in
either group or individual formats. Of the empirically sup-
ported intensive interventions, the most common approach is
cognitive-behavioral counseling. Key elements of this approach
include patient education regarding tobacco dependence and
withdrawal, advice for coping with withdrawal symptoms, identi-
fying high-risk situations (triggers) that produce urges to smoke,
teaching and practicing cognitive and behavioral responses for
coping with urges, discussion of long-term risk factors such as
depression and weight gain, and discussion of how to respond in
the event of an initial slip or lapse. It usually involves mul- ative to patients who continue to smoke.20 In summary, evidence
tiple sessions over multiple weeks, and may begin before the target
quit date. Counseling has been found to be effective, with an odds
ratio of 1.5 compared to no counseling and an average abstinence
rate of 16.2% compared to 11.2%.5 In addition to counseling, the
guideline also found evidence for intratreatment social support,
and it therefore recommends providing support and encourage-
ment as part of treatment.
Combining Counseling and Pharmacotherapy
A key conclusion of the most recent guideline is that the combina-
tion of counseling and medication is more effective than either
alone in producing long-term tobacco abstinence. Moreover, as
noted earlier, higher abstinence rates tend to be produced with
more intensive counseling. Thus, the guideline meta-analysis pro-
duced an estimated abstinence rate of approximately 33% when
medication was combined with nine or more sessions of counsel-
ing, compared to 22% when no more than one counseling session
was provided. Conversely, the guideline reported an odds ratio of
1.7 for the combination of medication and counseling, compared
to counseling alone.5 Counseling and medication appear to pro-
vide complimentary benefits. Whereas medication reduces with-
drawal symptoms and craving, counseling can teach cognitive
Chapter1 tobacco use and cessation 5
and behavioral coping strategies and can provide valuable social
support. Therefore, whenever medication is recommended or pro-
vided to patients, they should also be offered counseling.
SPECIAL ISSUES WITH CANCER PATIENTS
There is a growing body of evidence that smoking following can-
cer diagnosis has a negative impact on cancer treatment efficacy,
treatment-related complications and side effects, cancer recur-
rence and second malignancies, and overall survival.13 With
advances in cancer treatments, the number of cancer survivors is
significantly increasing, emphasizing the importance of improv-
ing health outcomes and quality of life within this high-risk popu-
lation. In this section, we will describe the benefits of smoking
cessation in cancer patients, review cessation and relapse rates
among cancer patients, and summarize the current knowledge
regarding cessation interventions targeted to cancer patients.
Benefits of Quitting Smoking
Continued smoking following cancer diagnosis has a negative
impact on overall survival in patients with cancer.13,14 Smoking
has been found to diminish treatment effects of radiation ther-
apy, chemotherapy, and surgery,13 and it contributes to increased
occurrence of treatment complications such as infection, poor
wound healing, and exacerbated side effects, such as oral muco-
sitis.13,15 Cancer- and treatment-related suppression of immune
function and weight loss may be exacerbated in smokers due to
nicotines suppressive effects on natural killer cell activity and
appetite.16,17
Smoking cessation results in several health benefits. Medical
complications can be diminished when patients stop smoking at
least four weeks before surgery.18 Quitting smoking is also associ-
ated with decreased risk of subsequent malignancies and increased
survival rate.19 Finally, some research indicates that patients who
remain smoke-free following cancer treatment report lower levels
of depression and anxiety and overall improved quality of life rel-
is accumulating that smoking cessation after a cancer diagnosis
improves quality of life, increases survival, and decreases cancer
recurrence and psychological distress.
Smoking Cessation and Relapse Among
Cancer Patients
Despite the benefits of quitting, 14%58% of cancer patients con-
tinue to smoke postcancer treatment.21 However, studies with
this population also indicate that cancer patients who smoke are
highly motivated to quit,18,22 and many make an attempt to quit
at the time of diagnosis.23 Because most quit attempts appear to
occur at the time of diagnosis and treatment, the period between
cancer diagnosis and end of treatment may represent the opti-
mal window of opportunity for provision of smoking cessation
interventions.
There is less research on long-term abstinence rates among
cancer patients. Estimates of smoking relapse range from 13% to
60%.23 Unlike the general population of smokers for whom relapse
most often occurs within a week after cessation, the majority of
relapse among cancer patients occurs within the first few months
following a quit attempt, again reflecting the initial motivational
impact of a cancer diagnosis. Predictors of smoking relapse have
6 Section I behavioral and psychological factors in cancer risk
included factors such as lower levels of quitting self-efficacy and
perceptions of risks, higher depression proneness, and greater
fears about cancer recurrence.23
Interventions for Cancer Patients
A systematic review and meta-analysis identified 10 randomized
controlled trials and three prospective cohort studies testing smok-
ing cessation interventions for cancer patients.24 Interventions
tested have included a variety of formats such as nurse-delivered
inpatient counseling, cognitive-behavioral therapy, motivational
interviewing, distribution of educational materials, and follow-up
phone calls. Several studies have also tested pharmacological ces-
sation treatments (nicotine replacement therapy, varenicline, or
bupropion), either alone or combined with counseling. Although
the overall findings did not demonstrate a statistically significant
treatment effect, there was evidence for improved cessation rates
with interventions delivered in the perioperative period, suggest-
ing an important window for delivering cessation interventions in
this population. Larger abstinence rates have also been observed
with a greater number of sessions, underscoring the benefits of
more intensive interventions.25 Nevertheless, there is evidence
that even brief physician-delivered cessation advice can have
potent effects at producing long-term tobacco abstinence among
cancer patients.26
When implementing smoking cessation interventions with
cancer patients, clinicians should be mindful of several unique
cancer-related issues. For instance, the delay in relapse among can-
cer patients described earlier may suggest a waning of motivation
as patients physically recover and return to their pre-diagnosis
lifestyles. Thus, smoking relapse-prevention interventions may
be particularly important as patients recover.23 Another issue to
consider is related to potential contraindications with the use of
smoking cessation pharmacotherapy. With respect to NRT, for
example, although nicotine is not itself carcinogenic, preclini-
cal research suggests that it can accelerate tumor growth, can
inhibit apoptosis induced by several chemotherapy agents, and
can negatively impact response to radiotherapy.27,28 In addition,
NRTs such as nicotine gum, spray, inhaler, or lozenge may not be
appropriate for individuals with oral cancers, whereas bupropion
is contraindicated for patients with a history of central nervous
system (CNS) tumors due to an increased risk of seizures. Hence,
clinicians must take extra care in selecting appropriate cessation
medications that address cancer patients unique needs.
Given the growing body of evidence demonstrating the sub-
stantial risks of continued smoking among cancer patients, it
is not surprising that recognition and support of cessation ser-
vices is increasing. For example, the American Society of Clinical
Oncology (ASCO) developed updated tobacco guidelines that
include recommendations for health professionals to assess
tobacco use and integrate cessation services in the oncology set-
ting.29 Similarly, a policy statement by the American Association
for Cancer Research (AACR) called for improved documenta-
tion of tobacco use among patients, as well as improvements in
evidence-based cessation assistance provided to all patients who
use tobacco or have recently quit tobacco.30 Improved compre-
hensive documentation of tobacco use would further research on
the effects of tobacco on cancer-related outcomes and its impact
on treatment response in clinical trials.
In summary, the importance of quitting smoking for all cancer
patients is clear. Clinicians who treat cancer patients must capital-
ize on the window of opportunity during cancer diagnosis and
treatment to identify smokers and make cessation interventions
readily available to these high-risk patients. Cancer patients who
stop smoking and remain abstinent after treatment are likely to
reap significant benefits, including improved quality of life and
prolonged survival.
CONCLUSION
Tobacco use by cancer patients appears to be influenced by the
same range of biopsychosocial factors as it is in the general popu-
lation. However, cancer diagnosis and treatment offer a unique
and potentially powerful opportunity for healthcare providers
to intervene by offering cessation advice and assistance. To date,
there is little research to recommend specialized smoking ces-
sation interventions for cancer patients above and beyond the
general recommendations of the Clinical Practice Guidelines. 5
However, it is likely that targeted treatments that capitalize on
the teachable moment could be highly effective, and research has
been increasing in this area. Meanwhile, the greatest progress in
both cancer prevention and recovery depends on consistent action
by all aspects of the healthcare system to promote tobacco cessa-
tion. This includes coverage of smoking cessation interventions by
third-party payers, establishment of smoke-free campuses by hos-
pital administrators, and strong cessation advice and assistance
by every healthcare provider.
ACKNOWLEDGMENTS
Preparation of this chapter was supported by National Cancer
Institute grants R01 CA134347 and R01 CA154596.
Disclosure:Dr.Brandon receives research support from Pfizer,
Inc., and has served on a scientific advisory board for Pfizer, Inc.
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2000;321:323329.
5. Fiore MC, Jan CR, Baker TB, etal. Treating Tobacco Use and
Dependence:2008 Update. Clinical Practice Guideline. Rockville,
MD:US Department of Health and Human Services, Public Health
Service; May 2008.
6. Baker TB, Brandon TH, Chassin L. Motivational influences on ciga-
rette smoking. Annu Rev Psychol. 2004;55:463491.
7. Dwoskin LP, Rauhut AS, King-Pospisil KA, Bardo MT. Review of the
pharmacology and clinical profile of bupropion, an antidepressant
and tobacco use cessation agent. CNS Drug Rev. 2006;12:178207.
8. Brandon TH, Drobes DJ, Unrod M, Heckman BW, Oliver JA,
Roetzheim RC, Karver SB, Small BJ. Varenicline effects on craving,

cue reactivity, and smoking reward. Psychopharmacology. 2011;
218:391403.
9. Agboola S, Mcneill A, Coleman T, Bee JL. A systematic review of the
effectiveness of smoking relapse prevention interventions for absti-
nent smokers. Addiction. 2010;105:13621380.
10. Brandon TH, Collins BN, Juliano LM, Lazev AB. Preventing relapse
among former smokers:a comparison of minimal interventions via
telephone and mail. J Consult Clin Psychol. 2000;68:103113.
11. Brandon TH, Meade CD, Herzog TA, Chirikos TN, Webb MS,
Cantor AB. Efficacy and cost-effectiveness of a minimal intervention
to prevent smoking relapse:dismantling the effects of content versus
contact. J Consult Clin Psychol. 2004;72:797808.
12. Cummins SE, Bailey L, Campbell S, Koon-Kirby C, Zhu Shu-Hong.
Tobacco cessation quitlines in North America:a descriptive study.
Tob Control. 2007;16:915.
13. Balogh EP, Dresler C, Fleury ME, Gritz ER, Kean TJ, Myers ML,
Nass SJ, Nevidjon B, Toll BA, Warren GW, Herbst RS. Reducing
tobacco-related cancer incidence and mortality:summary of an
Institute of Medicine workshop. Oncologist. 2014;19:110.
14. Warren GW, Kasza KA, Reid ME, Cummings KM, Marshall
JR. Smoking at diagnosis and survival in cancer patients. IJC.
2013;132:401410.
15. Gajdos C, Hawn MT, Campagna EJ, etal. Adverse effects of smok-
ing on postoperative outcomes in cancer patients. Ann Surg Oncol.
2012;19:14301438.
16. Tollerud DJ, Clark JW, Brown LM. The effects of cigarette smoking
on T cell subsets:a population-based survey of healthy Caucasians.
Am Rev Respir Dis. 1989 Jun;139(6):14461451.
17. Gritz ER, Vidrine DJ, Lazev AB. Smoking cessation in cancer
patients:never too late to quit. In:Green CW, Given B, Champion
VL, Kozachik S, Devoss DN, eds. Evidence-based Cancer Care and
Prevention:Behavioral Interventions. NewYork:Springer Publishing;
2003:107140.
18. Dresler CM, Gritz ER. Smoking, smoking cessation and the oncolo-
gist. Lung Cancer. 2001;34:315323.
19. Parsons A, Daley A, Begh R, etal. Influence of smoking cessa-
tion after diagnosis of early stage lung cancer on prognosis:sys-
tematic review of observational studies with meta-analysis. BMJ.
2010;340:b5569. doi:10.1136/bmj.b5569
Chapter1 tobacco use and cessation 7
20. Jang S, Prizment A, Haddad T, etal. Smoking and quality of life
among female survivors of breast, colorectal and endometrial cancers
in a prospective cohort study. J Cancer Surviv. 2011;5:115122.
21. Cox LS, Africano NL, Tercyak KP, Taylor KL. Nicotine dependence
treatment for patients with cancer. Cancer. 2003;98(3):632644.
22. Simmons VN, Litvin EG, Patel RD, Jacobsen PB, McCaffrey JC,
Bepler G, Quinn GP, Brandon TH. Patient-provider communication
and perspectives on smoking cessation and relapse in the oncology
setting. Patient Educ Couns. 2009. doi:10.1016/j.pec.2009.09.024
23. Simmons VN, Litvin EB, Jacobsen PB, etal. Predictors of smoking
relapse in patients with thoracic cancer or head and neck cancer.
Cancer. 2013;119:14201427.
24. Nayan S, Gupta MK, Strychowsky JE, Sommer DD. Smoking ces-
sation interventions and cessation rates in the oncology popula-
tions:an updated systematic review and meta-analysis. Otolaryng
Head Neck. 2013;149:200; originally published online May 28, 2013.
doi:10.1177/0194599813490886
25. Cox L Sanderson, Patten CA, Ebbert JO, etal. Tobacco use outcomes
among patients with lung cancer treated for nicotine dependence. J
Clin Oncol. 2002;20:34613469.
26. Gritz ER, Carr CR, Rapkin D, etal. Predictors of long-term smoking
cessation in head and neck cancer patients. Cancer Epidem Biomar
Prev. 1993;2:261270.
27. Trevino JG, Pillai S, Kunigal S, Singh S, Fulp WJ, Centeno BA,
Chellappan SP. Nicotine induces inhibitor of differentiation-1 in a
Src-dependent pathway promoting metastasis and chemoresistance
in pancreatic adenocarcinoma. Neoplasia. 2012;14:11021114.
28. Warren GW, Romano MA, Kudrimoti MR, Randall ME,
McGarryRC, Singh AK, Rangnekar VM. Nicotinic modula-
tion of therapeutic response in vitro and in vivo. Int J Cancer.
2012;131:25192527.
29. Hanna N, Mulshine J, Wollins DS, Tyne C, Dresler C. Tobacco
cessation and control a decade later:American Society of
Clinical Oncology policy statement update. J Oncol Pract.
2013;31(25):31473157.
30. Toll BA, Brandon TH, Gritz ER, etal. Assessing tobacco use
by cancer patients and facilitating cessation:an American
Association for cancer research policy statement. Clin Cancer Res.
2013;19:19411948.
 CHAPTER2
Diet and Cancer
Marian L.Fitzgibbon, Melinda R.Stolley,and
Lisa Tussing-Humphreys
OVERVIEW
Research over the past several decades shows that 95% of cancers
are due to environmental factors,1 including pollution, infections,
radiation, and other external factors, as well as tobacco, alcohol,
physical activity, diet, and other lifestyle factors.2 Diet, arguably
among the most modifiable of these factors, likely contributes to
the development of 30%35% of cancers.
Relatively recent but substantial shifts in the food landscape
in developed countries have contributed to changes in dietary
intake, energy balance, increases in body fat, and the development
of obesity.3 Obesity, defined as a body mass index (BMI) 30kg/
m,4 is associated with a number of cancers.5 Obesity exceeds 30%
in both genders, and it is predicted to reach 51% by 2030 across
all adult age groups in the United States.6 Thus, the World Cancer
Research Fund (WCRF), the American Institute for Cancer
Research (AICR), the American Cancer Society (ACS), and cancer
researchers in the United States and globally are devoting signifi-
cant resources to studying the relationship between diet, dietary
patterns, lifestyle risk factors, obesity, and cancer.7
Advances in research methodology hold promise for reconciling
the complex literature on the role of diet and cancer risk. Whereas
prior research focused more often on specific nutrients and foods
in isolation, rather than examining the effects of dose, timing,
exposure, and overall nutritional status,7 more recent studies
demonstrate that studying dietary patterns is key to enhancing
our knowledge of the relationship between diet and cancer.7 The
general consensus among studies suggests that a healthy dietary
pattern includes fruits, vegetables, fish, whole grain cereals, nuts,
legumes, and intake of healthy fats; this is presumably due to the
value of these foods in providing a combination of important
vitamins, minerals, fiber, protein, and antioxidants associated
with reduced cancer risk.7 An unhealthy dietary pattern, on the
other hand, consists of red meat, processed meat, refined sugars
and sugar-sweetened beverages, refined flours, alcohol, and high
saturated fat intake.8
While diet is often a major contributor to the energy imbal-
ance that leads to the development of obesity, physical activ-
ity patterns also play an important role.9 Extensive evidence
shows increased physical activity may reduce the incidence of
and improve survival for various cancers and that inactivity is
associated with the majority of chronic diseases. Strong evidence
demonstrates that regular physical activity of all types protects
against excessive weight gain and obesity.7 Thus, the interaction
of energy intake (i.e., diet) and energy expenditure (i.e., physical
activity) is fundamental to weight management and cancer risk
and control.7
This chapter (1)summarizes the role of dietary factors and can-
cer risk, (2)highlights the relationship between dietary patterns
and cancer, (3)summarizes the role of weight management and
energy balance, (4)identifies anticipated environmental barriers
to diet-related cancer risk reduction, and (5)describes the next
steps for this area of research.
DIET-RELATED FACTORS
AND CANCER RISK
This section presents an overview of the best-established asso-
ciations, as reported by the WCRF and the AICR, between the
leading causes of cancer death worldwide10 and dietary factors,
physical activity, and body fatness11 (summarized in Table 2.1).
Lung Cancer
Lung cancer is the most common cause of cancer and can-
cer death10 in men worldwide, and it is the third leading cause
of cancer death among women.12 Smoking is the primary risk
factor, accounting for an estimated 85% of lung cancers in
developed countries.12 Arsenic in drinking water is the most
established dietary risk factor for lung cancer.13 The World
Health Organization (WHO) reported in 2001 that drinking
water in Bangladesh, India (West Bengal), China, and parts of
the United States (Western states) had levels of arsenic above the
recommended limit.14 Beta-carotene supplements are also asso-
ciated with increased risk for lung cancer, particularly among
smokers.15 This association was discovered through two large
intervention trials, the Beta-carotene and Retinol Efficacy Trial
(CARET) and the Alpha-Tocopherol, Beta-Carotene (ATBC)
Cancer Prevention Study. The CARET study was conducted in
the United States with male and female smokers and former
smokers, as well as men with occupational exposure to asbestos.
The ATBC Cancer Prevention Study was conducted in Finland
with male smokers. To date, only fruits and foods containing
carotenoids show sufficient evidence to suggest a protective effect
against lung cancer.13
 Chapter2 diet and cancer 9

Table2.1 Dietary, Physical Activity, and Weight-Related Factors of Asia and Latin America.12 It is the third most common cause
Showing Convincing or Probable Evidence of Association with the Top of cancer death.10 Infection with helicobacter pylori (H.pylori),
Ten Causes of Cancer Death Worldwide a bacterium found in the stomach, is the strongest risk factor for
stomach cancer, accounting for 80% or more of stomach cancers,
Cancer Increases Risk Decreases Risk particularly in developing countries.13
Lung Arsenic in water Fruits Salt and salt-preserved foods have the strongest association with
increased risk for stomach cancer.13 This association may explain
Beta-carotene supplements Foods containing carotenoids
the high rates of stomach cancer observed in parts of Asia and
Liver Exposure to aflatoxin None Latin America, where salt-preserved foods are frequently con-
Alcohol sumed.13 The protective effects of fruits for stomach cancer are
Body fatness consistently supported in case-control and cohort studies.13 Data
Stomach Salt and salt-preserved foods Fruits for non-starchy and allium vegetables are also consistent but are
limited to case-control studies.13 Some limited evidence suggests
Deficient fruits and Foods containing selenium
vegetables that foods containing selenium may also reduce risk by providing
protection against H.pylori.13
Colorectal Red meat Physical activity
Processed meats Fiber Colorectal Cancer
Alcohol Calcium
Colorectal cancer, the third most common cancer worldwide
Body fatness Garlic
(third for men, second for women),10 is more prevalent in North
Breast Alcohol None America and Europe than in Africa or Asia.12 Diet, physi-
Body fatness Body fatness cal activity, obesity, and alcohol consumption influence risk.11
(postmenopausal) (premenopausal) Substantial evidence indicates that red meat and processed
Physical activity meats increase risk for colorectal cancer. Red meat contains the
Esophageal Body fatness Non-starchy vegetables
iron-containing protein heme, which can facilitate the formation
of potentially carcinogenic compounds. Also, red meat cooked at
Alcohol Foods containing
beta-carotene
high temperatures can produce heterocyclic amines and polycy-
Hot beverages
clic aromatic hydrocarbons that may cause colon cancer in people
Foods containing vitamin C
with a genetic predisposition. Processed meats (e.g., ham, bacon,
Fruits
sausages, canned meats) are preserved by methods other than
Pancreatic Body Fatness None freezing, such as smoking salting, air-drying, or heating. Alcohol
Prostate Animal fat Selenium intake also increases risk, particularly in men and in people with
Calcium Lycopene low folate levels. Body fatness also increases risk.11 The relation-
ship between fiber and colorectal cancer is the subject of ongo-
Cervical None None ing debate, though the WCRF and the AICR have summarized
Leukemia None None the data as convincingly supportive that dietary fiber decreases
risk. In the same report, these organizations state that research
evidence also shows physical activity decreases risk.11,13 Calcium
Liver Cancer and cow milk also appear to reduce colorectal cancer risk, though
Liver cancer, the second most common cause of cancer death the effect for milk is, in part, mediated by calcium.11 Evidence
worldwide and the sixth most commonly occurring cancer (fifth for calciums protective effects is based on studies of 1200 mg/day
for men, seventh for women),10 is more prevalent in develop- supplements.
ing countries (China has the highest reported rates). Hepatitis
B (HBV) and C (HCV) viruses are the primary risk factors, Breast Cancer
accounting for 75% of cases worldwide.13 Aflatoxin, a mold that Breast cancer is the most frequently occurring cancer and the
develops on foods stored in hot, wet conditions, is the most signif- most common cause of cancer death among women worldwide
icant dietary risk factor for liver cancer.13 Exposure to aflatoxins (the fifth leading cause of cancer death overall).10 Because it is a
in combination with HBV further increases risk for hepatocel- hormone-related cancer, risk is most affected by factors that influ-
lular cancer, the most common form of liver cancer.13 While afla- ence exposure to estrogen, including menopausal status. In a recent
toxin exposure is the primary dietary risk factor in developing update by the WCRF, alcohol was identified as having convincing
countries, it is less common in developed countries, where alco- evidence for contributing to pre- and postmenopausal breast can-
hol consumption is the main dietary risk factor.13 Little is known cer risk.11,13 Body fatness is also a risk factor for postmenopausal
about how diet may protect against liver cancer. Data suggest women. Proposed mechanisms suggest that increased fatness is
that fruits may decrease risk, but this association is not yet firmly associated with increased levels of (1)estrogen, (2)insulin resis-
established. 13 tance, and/or (3)inflammation.11 Evidence is insufficient to con-
firm the protective effects of any specific dietary factors. However,
Stomach (Gastric) Cancer body fatness appears to be protective for pre-menopausal women,
Stomach cancer is the fifth most common cancer worldwide, with and physical activity is protective for both pre- and postmeno-
the highest incidences noted among men and in certain regions pausal women.11,13
10 Section I behavioral and psychological factors in cancer risk
Esophageal Cancer
Cancer of the esophagus is the sixth most common cause of
cancer death10 and the eighth most common cancer world-
wide.13 Esophageal cancer is strongly related to weight status
and lifestyle behaviors, including tobacco use, alcohol con-
sumption, and diet.13 Convincing evidence from cohort and
case-control studies supports that body fatness and alcohol
contribute to the development of esophageal cancer.13 Probable
evidence suggests that drinking beverages at high temperatures
is also associated with increased risk.13 Several studies report
that non-starchy vegetables, foods containing beta-carotene,
foods containing Vitamin C, and fruits decrease risk for esoph-
ageal cancer.13 The WCRF and the AICR consider this evidence
probable.
Pancreatic Cancer
Pancreatic cancer is the tenth most common cancer world-
wide and the seventh most common cause of cancer deaths.10
Incidence is higher in men than in women and higher in devel-
oped countries. Established risk factors are smoking and body
fatness.13
WCRFs continuous update project concluded there is convinc-
ing evidence body fatness increases pancreatic cancer risk.11,13 No
convincing or probable evidence suggests any dietary factors that
increase risk, though limited data suggest that red and processed
meats, alcohol, high fructose foods/beverages, and foods contain-
ing saturated fatty acids increase risk. Coffee was previously con-
sidered a possible risk factor, but the updated report indicates this
is unlikely.11 No food or nutrition factors are identified as decreas-
ing pancreatic cancer risk.
Prostate Cancer
Prostate cancer is the second most common cancer in men
and eighth most common cause of cancer death worldwide.10
Incidence is much higher in developed countries. 12 To date, insuf-
ficient data exist to identify any dietary factor as convincingly risk
promoting. However, probable evidence indicates that high cal-
cium intake increases risk.13 Notably, these studies did not adjust
for dietary fat, which may confound the findings. Ecologic studies,
animal studies, and some case-control studies support a positive
relationship between dietary fat, particularly of animal origin,
and prostate cancer risk. Dietary factors that may protect against
prostate cancer include selenium, lycopene, and alpha-tocopherol
(vitamin E).13 Evidence is strongest and most consistent for sele-
nium and lycopene.11
Cervical Cancer
Cervical cancer is the second most common cancer among
women worldwide and the ninth leading cause of cancer death
in women worldwide.12 The primary risk factor is infection with
human papilloma viruses. Based on the literature, food and nutri-
tion do not play a significant role in increasing or decreasing cer-
vical cancer risk.13
Leukemia
Leukemia is the tenth leading cause of cancer death10 and the elev-
enth most commonly occurring cancer worldwide.12 No dietary
or lifestyle risk factors have been identified.
DIETARY PATTERNS AND CANCER RISK
As previously noted, single foods and nutrients are not typically
consumed in isolation. Because dietary nutrients are eaten in
combination, synergistic effects between food and nutrients may
create a metabolic milieu that prevents or promotes carcinogen-
esis.16 This section presents an overview of dietary patterns and
associations with cancer risk and risk of cancer-related mortal-
ity, as indicated by studies that examined adherence to science-
based public health dietary recommendations such as the US
governments Dietary Guidelines for Americans (DGAs) and
Mediterranean and vegetarian dietary patterns (summarized in
Table 2.2). The DGAs and the Mediterranean pattern have cor-
responding index scores that can be used to quantify adherence
using a standardized approach and can therefore be tested consis-
tently across populations.17
The DGAs are designed to promote good health and to reduce
the risk of chronic diseases, including cancer.18 The guidelines
are revised every five years to account for advances in scientific
knowledge pertaining to diet and disease relationships (the cur-
rent DGAs are presented in Table 2.2). The Healthy Eating Index
(HEI) is a scoring tool that measures adherence to a given set of
DGAs; higher scores are indicative of greater adherence to the
guidelines.19 In two large prospective US cohort studies, greater
adherence to the 2005 DGAs, measured by HEI-2005, was asso-
ciated with lower overall cancer risk in both men and women.17
Several analyses emerging from the National Institutes of Health
American Association of Retired Persons (NIH-AARP) Diet and
Health observational cohort study demonstrated that greater
adherence to the 1995 and 2005 DGAs was associated with
reduced risk for colorectal, gastric, esophageal, pancreatic, and
head and neck cancers.20
Ecological studies suggest that overall cancer risk is lower in
Mediterranean countries versus northern Europe, the United
Kingdom, and the United States.21 Many have attributed this dis-
tinction to the customary foods consumed by people residing in the
Mediterranean region. AMediterranean dietary pattern is one in
which vegetables and whole grains feature prominently, fresh fruit
is a typical dessert, olive oil is the main fat source, animal-based
protein intake is limited, and wine is consumed in low to mod-
erate amounts.21 Mechanistically, it is hypothesized that certain
aspects of the Mediterranean diet, including a healthy fat ratio
and high fiber and antioxidant content, work synergistically to
promote reduced systemic inflammation and down-regulation of
pro-carcinogenic pathways.22 Several research groups have devel-
oped scoring indices to operationalize and assess adherence to a
Mediterranean dietary pattern and disease-related outcomes. The
alternate Mediterranean Diet (aMed) score is a variation that was
developed specifically for US populations.23 The aMED has nine
components, with one point awarded for scoring higher than the
median intake within a given population/cohort for whole grains,
fruits, vegetables (except potatoes), nuts, fish, legumes, and mono-
unsaturated versus saturated fat ratio; one point is awarded for red
and processed meat below the median; and one point is awarded
for consuming one alcoholic beverage daily. In the large European
Prospective Investigation into Cancer and Nutrition (EPIC)
study, greater adherence to a Mediterranean pattern, based on a
Mediterranean diet-scoring index, was associated with reduced
overall cancer risk.24 In the NIH-AARP Diet and Health study,
 Chapter2 diet and cancer 11

Table2.2 Dietary and Lifestyle Recommendations for Good Health and Cancer Prevention

2010 Dietary Guidelines for
Americans19
Build a healthy plate
Make half your plate fruits and
vegetables.
Make at least half your grains whole.
Switch to fat-free or 1% milk.
Vary your protein.
Eat seafood twice per week.
Eat beans as a protein source.
Keep meat and poultry portions small
and lean.
Choose foods and drinks with little
orno added sugar.
Look out for sodium in the foods
youbuy.
Eat fewer foods that are high in
solid fat.
Enjoy your food, but eat less.
Cook more often at home.
Track what you eat to know how
muchyou eat and drink.
Limit alcohol to 1 drink per day
forwomen and 2 drinks per day
formen.
Be physically active.
General Mediterranean Diet
Characteristics54
Daily abundance of plant-based foods
including whole grains, vegetables, fruits,
and legumes.
Olive oil used daily as the principal
fatsource.
Low to moderate daily consumption
oflow-fat dairy foods.
Animal-based protein consumed in
low to moderate amounts weekly or
monthly.
Sweets consumed in low amounts
monthly.
Wine in moderation with meals.
Be physically active.
American Cancer Society7
Achieve and maintain a healthy
weightthroughout life.
Adopt a physically active lifestyle.
Consume a healthy diet with
emphasison plant-based foods.
Choose foods and beverages in
amounts that help achieve and
maintain a healthy weight.
Limit consumption of processed
meatand red meat.
Eat at least 2.5 cups of vegetables
andfruits each day.
Choose whole grains instead of
refinedgrain products.
If you drink alcoholic beverages, limit
consumption.
American Institute for Cancer
Research13
Be as lean as possible without
becoming underweight.
Be physically active for at least
30minutes every day.
Avoid sugary drinks.
Limit consumption of energy-dense
foods.
Eat more of a variety of vegetables,
fruits, whole grains, and legumes such
as beans.
Limit consumption of red meats (such
as beef, pork and lamb) and avoid
processed meats.
If consumed at all, limit alcoholic
drinksto 2 for men and 1 for women
a day.
Limit consumption of salty foods and
foods processed with salt (sodium).
Dont use supplements to protect
against cancer.
Do not smoke or chew tobacco

greater adherence to a Mediterranean dietary pattern (aMED scores
ranging from 6 to 9 points) was associated with decreased risk of
cancer-related mortality in both men and women.25 In regard to
site-specific cancers, greater adherence to a Mediterranean diet
was associated with lower colorectal cancer risk in both men and
women enrolled in the EPIC, Health Professionals Follow-up,
Nurses Health, and NIH-AARP studies.16
The association between a vegetarian dietary pattern and reduced
cancer risk stems from studies of the Seventh-day Adventist religious
sect, whose doctrine advises against eating animal flesh.26 Seventh-
day Adventists adhering to a vegetarian eating pattern had lower
rates of cancer overall, lower rates at specific sites such as the prostate
and colon, and lower risk of cancer-related mortality compared to
the general US population.27 However, Seventh-day Adventists also
typically abstain from tobacco and alcohol, which may contribute to
the observed health effect.26 In the EPIC cohort, vegetarianism was
associated with lower overall cancer risk and risk for stomach and
bladder cancer, but no effect was observed for colorectal and prostate
cancer incidence compared to non-vegetarians.4 Studies of breast
cancer incidence and mortality have not demonstrated differences
between vegetarians and non-vegetarians.28
DIETARY INTERVENTION TRIALS
This section presents an overview of several US-based large ran-
domized trials designed to examine the effects of dietary factors
on cancer prevention or control.
Womens Healthy Eating and Living (WHEL) Study
This randomized trial (19952006)29 assessed whether a sig-
nificant increase in vegetable, fruit, and fiber intake and a
decrease in dietary fat intake could reduce the risk of recur-
rent and new primary breast cancer and all cause mortal-
ity among 3,088 survivors of early stage breast cancer. Women
in the intervention were instructed to consume five vegetable
servings plus 16 ounces of vegetable juice, three fruit servings,
30 grams of fiber, and 15% to 20% of energy intake from fat
daily. Women in the comparison group received written mate-
rials consistent with the five servings a day recommenda-
tion for fruits and vegetables. Although the intervention group
did adhere to the prescribed diet, there was no effect on breast
cancer events or mortality among early stage breast cancer
survivors.
Womens Intervention Nutrition Study (WINS)
This phase III clinical trial (19942001)30 was designed to exam-
ine the relationship between dietary fat intake and breast cancer
among 2,437 women with resected, early stage breast cancer.
Women in the intervention group were counseled to reduce
dietary fat intake to 15% of calories during a four-month inter-
vention period. The comparison group received no dietary coun-
seling. Interim results at 60months showed that dietary fat intake
and body weight were significantly lower in the intervention group
compared to the control group.
12 Section I behavioral and psychological factors in cancer risk
Womens Health Initiative (WHI)
The WHI was a large, complex study of over 45,000 postmeno-
pausal women (19932004)31 that included a clinical trial with
three intervention arms, including two that were diet- and
cancer-related. The first of these tested a low-fat eating pattern
(less than 20% of total calories; five servings a day of fruits and
vegetables; six servings a day of whole grains) on breast cancer
and colorectal cancer. Control participants received information
consistent with the USDA DGAs. Follow-up at 8.1years showed
no significant reduction in the incidence of breast cancer or colon
cancer among women in the intervention group. 32 The second
arm examined the effects of calcium and vitamin D supplemen-
tation on colorectal cancer. Over an average of seven years, no
significant difference was observed in colorectal cancer incidence
between the intervention and control groups. 33 The extended
period of time over which colorectal cancer develops may have
led to these null findings. In recent secondary analyses, vitamin
D and calcium supplementation were not associated with reduced
invasive cancer risk or mortality,34 whereas vitamin B6 and ribo-
flavin intake were associated with lower colorectal cancer risk.34
Polyp Prevention Trial (PPT)
The PPT (19911998)35 was a randomized controlled study of
the effects of a low-fat (20% of total energy intake), high-fiber (18
grams/1000 calories), high fruit and vegetable (58 daily servings)
diet on the recurrence of colorectal adenomas among individu-
als who had a polyp removed in the previous six months. At the
four-year follow-up, results suggested that adopting a low-fat,
high-fiber diet and increasing fruit and vegetable consumption
did not affect the risk of recurrence for colorectal adenomas.
Calcium Polyp Prevention Study
This randomized trial (19881992)36 examined the effects of
calcium supplements on the recurrence of colorectal polyps.
Individuals with a history of colorectal polyps were randomized to
receive daily calcium supplements (1200 milligrams) or placebo for
four years. Initial results showed that calcium supplements were
associated with a decreased risk of recurrent colorectal adenomas.
At the five-year follow-up, results showed a prolonged effect of cal-
cium supplementation on risk of recurrent colorectal adenomas.37
Selenium and Vitamin E Cancer Prevention
Trial(SELECT)
The SELECT trial (20012008)38 was designed to investigate the
individual and additive effects of selenium and vitamin E on prostate
cancer incidence. The study enrolled more than 35,000 men from
the United States and Puerto Rico. Initial data showed that daily
selenium and vitamin E supplements, taken alone or together for a
median of 5.5years, did not prevent prostate cancer.39 More recent
findings indicate that after an average of 7years (5.5years on supple-
ments/placebo and 1.5 off), there were 17% more cases of prostate
cancer in men taking only vitamin E than in men taking placebos.38
WEIGHT MANAGEMENT AND CANCER
RISK REDUCTION
Evidence shows that approximately 90,000 deaths from can-
cer could be avoided each year in the United States if everyone
maintained a healthy body weight.5 Excessive weight or obesity,
defined as a BMI 30kg/m2, is based on height and weight rather
than body fatness. However, among studies using nationally rep-
resentative samples, BMI has been found to be highly correlated
with body fat.4 Using prospective data from more than 2million
women and men, BMI is linked with an increased risk of post-
menopausal breast, colon, kidney, pancreatic, endometrial, and
esophageal cancer.40 Although not yet conclusive, a growing body
of research also supports obesity as a factor for increased risk of
cancers of the liver and gallbladder.40 Obesity has also been shown
to be associated with worse cancer treatment outcomes and prog-
nosis, as well as increased cancer-related mortality.41 Thus, one
of the most important recommendations to reduce cancer risk is
to maintain a healthy weight throughout life.7 Unfortunately, this
recommendation is too often delivered without the acknowledg-
ment of the challenges faced when striving to maintain a healthy
weight or the provision of clear and achievable guidelines.
While not all attempts at weight loss and maintenance are
unsuccessful,42 the difficulty of successfully treating obe-
sity has been well documented (e.g., Brownell43). Traditional
cognitive-behavioral interventions that require multiple weekly
meetings, dietary restriction (10001200 kcal/day), physical activ-
ity (60 minutes most days of the week), and intensive behavioral
self-management usually show an initial weight loss of 10% over
six months.44 However, long-term maintenance of weight loss is
extremely difficult,43 and most intervention participants regain
about one-third of their weight within one year and return to
pre-intervention weight by five years post-treatment.45
Obesity treatment is complicated by multiple factors that often
result from weight loss itself, including reductions in energy expen-
diture3 and increases in appetite,43 as well as the significant chal-
lenge of maintaining the strict self-regulatory behaviors needed
to sustain weight loss.43 This has prompted an increased focus on
prevention and the potential benefit of instituting small changes
rather than large changes that are not sustainable.46 America on
the MOVE (AOM) is a national initiative 47 to promote the small
changes approach. The approach is based on the premise that the
progressive weight gain among US and other populations is due
to a small positive energy balance and that by consistently chang-
ing energy balance by approximately 100 calories a day through
a combination of a decrease in energy intake and an increase in
energy expenditure, weight gain in much of the population could
be prevented.48
The starting goal of this approach is to increase activity by 2000
steps per day and decrease caloric intake by 100 calories per day.49
Several randomized trials have demonstrated the efficacy of the
small changes approach.50 Though this approach, which encour-
ages modest increases in physical activity and small reductions in
caloric intake, is not likely to produce dramatic short-term ben-
efits, these changes can provide sustained motivation as well as
long-term adherence.
ENVIRONMENTAL CHALLENGES TO
CANCER RISK REDUCTION
The current prevalence of BMI-defined obesity among adults in
the United States continues to exceed 30% in most subgroups,
based on national data.4 Moreover, obesity increased significantly
over the 12-year period from 1999 through 2010 for men and for
non-Hispanic black and Mexican American women. The most

recent national data show that 33.5% of all men are obese and that
among women, 56.6%, 44.4%, and 32.8% of non-Hispanic black,
Hispanic, and non-Hispanic white women are obese, respec-
tively.4 Disparities in rates of obesity by race/ethnicity and socio-
economic status emphasize the need to create environments that
facilitate energy balance. Unfortunately, minorities and the poor
are at a significant disadvantage when it comes to making health-
ier dietary choices.51 Diets higher in fruits, vegetables, and whole
grains are associated with decreased cancer risk and smaller gains
in BMI and waist circumference,52 but these foods tend to be more
expensive than many energy-dense foods that are discouraged in
dietary recommendations for cancer prevention.13 In addition,
urban areas that are predominantly minority and/or low-income
tend to offer limited access to the foods recommended for cancer
prevention, and the built environment often limits opportunities
for safe outdoor physical activity and often introduces other fac-
tors that increase cancer risk (e.g., higher rates of tobacco or alco-
hol use, exposure to manufacturing chemicals).7
CONCLUSIONS AND NEXT STEPS
Although diet, obesity, and a sedentary lifestyle are potentially
modifiable causes of cancer, identifying specific associations
between these factors and cancer over the course of a lifetime
remains a challenge due to the long latency period for cancer
development and its complex pathogenesis.1 Despite this limita-
tion, it is clear that there is a relationship between diet, lifestyle
risk factors, and cancer development, and that many cancers
are preventable.7 Unifying diet and physical activity messages
by adopting an energy balance framework (i.e., proper diet
and physical activity) will create a potent message. 53 Overall
cancer burden can be reduced through changes in individual-
and population-level behavior, as well as a social commitment
tochange.
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 CHAPTER3
Physical Activity and Cancer
Christine M.Friedenreich, HeatherK.Neilson,
and Darren M.R. Brenner
INTRODUCTION
There is increasing awareness and interest in physical activity as a
means for the primary prevention of cancer because of the strong
and consistent evidence for a beneficial effect on cancer incidence.
Physical activity is a modifiable lifestyle risk factor that, along with
dietary intake, tobacco use, and weight control, has broad health
benefits and is amenable to change. Physical activity, defined as
any bodily movement produced by skeletal muscles that results in
energy expenditure, encompasses all movement, including occu-
pational, household, recreational/leisure, and commuting activity.
Hence, it is more than just exercise, which is a planned, structured
activity that is usually of moderate to vigorous intensity and is
undertaken to improve or maintain physical fitness.
This chapter will provide a summary of the observational epi-
demiologic evidence to date on the association between physical
activity and cancer for each of the main cancer sites; an overview
of the main hypothesized biologic mechanisms that might explain
how physical activity reduces cancer risk; and a summary of the
main public health guidelines on physical activity for cancer
prevention.
EPIDEMIOLOGIC EVIDENCE
Literature Review
There have been several books,1,2 reviews, 3 and meta-analyses4,5
published recently on the role of physical activity in cancer etiology
that have synthesized results from epidemiologic studies on this
topic. For the current review, we identified all English-language
scientific publications cited on PubMed (NLM-NIH) up to
December 2013 describing human studies of physical activity and
cancer risk. Studies on the effects of physical activity post-cancer
diagnoses were manually excluded. Our most recent search com-
bined the following search terms: (Motor Activity[Mesh] or
physical activity or exercise) and (Neoplasms[Mesh] or cancer
or tumor or tumour). Reference lists from relevant, recently pub-
lished systematic review articles were also manually searched. For
the purpose of this review, we limited the discussion to the top
six cancers for which the most epidemiologic research has been
done relating physical activity to cancer risk, and we provide
here only high-level summary tables and figures of this evidence.
We abstracted information from each study on the study design,
sample characteristics, definition of physical activity, assessment
of confounding and effect modification, and main study results
(data not shown). When several different risk estimates were
reported in an article (e.g., by time of life, type of activity, in strati-
fied analyses), we extracted only one risk estimate for presentation
purposes as follows:(1)chose result for the overall study popula-
tion as opposed to stratified results; (2)presented the effects of life-
time activity or, if lifetime activity was not assessed, used findings
for recent activity; (3)presented the combined effects of all types
of physical activity or, if total activity was not assessed, used find-
ings for recreational activity. To provide an overall quantification
of the magnitude of the association between physical activity and
each cancer site across all studies, we estimated pooled odds ratios
(for case-control studies) and pooled relative risks (for cohort
studies) and confidence intervals using the DerSimonian-Laird
method for random effects models.6
Methodologic Issues
There are several methodologic issues that need to be considered
when reviewing this evidence. First, definitions of physical activ-
ity including the type/domain, timing in life, and assessment of
frequency, duration, and intensity of activity have varied across
studies, thereby complicating any comparisons of results between
studies. These definitions have ranged from crude classifications
of physical activity based on occupational title to very detailed
assessments of all types and parameters of activity over the life-
time. The majority of these studies have also relied on self-reported
data since the use of devices to measure activity objectively, such
as accelerometers, has only been introduced relatively recently
and generally in smaller scale studies, given the respondent bur-
den and complexity of data management involved with these data.
In addition, the range of physical activity in some of these inves-
tigations has been insufficiently wide to examine specifically how
high doses of physical activity influence cancer risk.
Second, there have been no randomized controlled exercise
intervention trials for cancer prevention because of the cost, com-
plexity, and length of time that would be required for such trials.
Ballard-Barbash and colleagues7 estimated that 25,00035,000
participants would be required in a controlled trial of exercise and
weight control for cancer incidence outcomes. Given the lack of sup-
port for such large-scale cancer prevention trials at present, random-
ized controlled exercise trials of intermediate biologic endpoints for
16 Section I behavioral and psychological factors in cancer risk

cancer have been conducted to investigate the hypothesized biologic
pathways between exercise and cancer development.810
Third, confounding and effect modification are important
parameters to be considered when reviewing this literature. Since
cancer etiology is multifactorial and other behaviors, such as
dietary and alcohol intake, tobacco and exogenous hormone use,
and personal characteristics such as body mass index, ethnicity/
race, socioeconomic status, and parity are related to both physi-
cal activity and these cancers, adequate control for confounding is
essential in these studies.
Finally, an emerging area of research and public health inter-
est is the role of sedentary behavior in cancer etiology. Sedentary
behavior is distinct from physical activity and is defined as any
activity that is less than 1.5 metabolic equivalents (METs) per
hour, where one MET is defined as the amount of energy that is
expended at rest. There is now increasing awareness that meet-
ing public health recommendations for physical activity, such
as 30 minutes of daily activity, may still be insufficient for can-
cer prevention if the rest of the day is spent in prolonged sitting.
The evidence on the association between sedentary behavior and
cancer risk remains preliminary since few studies have included
specific assessments of sedentary behavior in addition to physi-
cal activity or have been designed in particular to examine this
behavior. Theevidence that does exist is suggestive of an increased
risk associated with prolonged sitting that is independent of time
spent being physically active.11
Summary of Evidence
We identified more than 300 studies that have examined some
aspect of physical activity and risk of colon, breast, endometrial,
lung, ovarian or prostate cancer. We classified the epidemiologic
evidence supporting these associations, drawing from our own
data and earlier appraisals by the American Institute for Cancer
Research/World Cancer Research Fund.12 We classified the evi-
dence for a beneficial effect of physical activity on cancer risk as
convincing for colon and postmenopausal breast cancer, prob-
able for endometrial cancer, and possible for lung, prostate, and
ovarian cancers (Table 3.1). The decreases in risk are fairly large,
with average risk reductions of 25%30% for colon/colorectal and
endometrial cancers, 20%25% for breast and lung cancers, 10%
15% for ovarian cancer, and under 10% for prostate cancers. There
is considerable evidence for inverse protective dose-response effects,
with increasing levels of physical activity decreasing risk of cancer at
these sites in a linear fashion. Although some studies have not found
an association between physical activity (however defined) and can-
cer risk, overall the evidence confirms a protective effect. Of par-
ticular importance is that no consistent increases in risk have been
observed with higher physical activity levels for any cancer site.

Table3.1 Summary of Epidemiologic Evidence on Proposed Associations Between Physical Activity and Cancer Risk

Cancer Site Number of Epidemiologic Studies Crude Average Studies Showing Timing of Factors That Overall Level of
Showing Reduced Risk1 Risk Reduction Statistically Physical Activity Might Influence Evidence3
Significant Inverse Associated With the Association
Dose-Response Significant Risk Between Physical
Prospective Trend Reduction Activity And
Total Studies Cohort Studies Cancer Risk2
Colon/ 74 of 92 16 of 38 25%30% 41 of 48 Recent, Colon sub-site, Convincing
Colorectal adolescence, tumor subtype,
mid-life, Lifetime body mass index,
family history, sex
Breast4 69 of 98 23 of 38 20%25% 43 of 56 Recent, Menopausal status, Postmenopause:
[Postmenopausal [Postmenopausal [Postmenopausal adolescence, body mass index, Convincing
studies:12 of13] studies:10 of11] studies:9 of11] mid-life, lifetime race, family history, Premenopause:
parity, hormone Possible
receptor status
Endometrial 26 of 30 10 of 11 25%30% 14 of 22 Recent, lifetime Various Probable
hypothesized; none
strongly apparent
Lung 20 of 28 9 of 15 20%25% 7 of 9 Recent, lifetime Smoking, sex, Possible
histological subtype
Ovarian 11 of 24 3 of 12 10%15% 7 of 12 Recent, lifetime Histological subtype Possible
Prostate 23 of 55 12 of 26 < 10% 11 of 34 Recent, mid-life, Age, race, fatal Possible
lifetime prostate cancer

Modified from:Friedenreich CM, Physical activity and cancer prevention:from observational to interventional research. Cancer Epidemiol Biomarkers Prev 2001;10:287301.
1 Represents the number of studies showing a statistically significant or statistically non-significant decrease in cancer risk.

2 Summarizes factors studied commonly in relation to physical activity and cancer risk, and for which differential subgroup effects were found in multiple studies. For most factors, more

research is required to confirm a subgroup effect. Further discussion is provided in this chapter and in reference.1
3 Overall level of epidemiologic evidence is also supported by reference.12

4 Postmenopausal studies of breast cancer were conducted exclusively in postmenopausal women (i.e., results from subgroup analyses that stratified by menopausal status are not

reflected in this summary table).

 Chapter3 physical activity and cancer 17

Breast Cancer Colon Cancer

The most research on physical activity and cancer at any site
has been conducted on breast cancer with 98 studies reported
to date (Table 3.1). Of these 98 studies, 69 studies have found
risk reductions with a stronger overall effect observed for 54
case-control studies (summary odds ratio [OR]=0.69; 95% con-
fidence interval [95% CI]=[0.640.75]) than across 44 cohort
studies (summary relative risk [RR] = 0.85 [95% CI = 0.81
0.89]) (Figure 3.1). The difference in risk reductions observed
between case-control and cohort studies is likely because of the
more detailed and precise measurements of physical activity
used in the retrospective studies due to feasibility issues within
the cohort studies. These detailed assessments have contrib-
uted to less non-differential misclassification error in the ret-
rospective studies, which could have biased the results to the
null in the cohort studies. There is also consistent evidence for
an inverse dose-response trend observed among 43 of 56 stud-
ies. Across these studies, there is some evidence that sustained
lifelong activity is associated with the largest risk reductions;
however, activity done later in life (e.g., after menopause) is also
important for reducing breast cancer risk. The effect of physi-
cal activity on breast cancer risk is observed for both pre- and
postmenopausal women; however, inverse associations tend to
be statistically significant and more consistent among post-
menopausal women. Likewise, some studies imply the greatest
benefit for lean women, possibly in non-Caucasians (based on
limited research), parous women, in women without a family
history of breast cancer, and possibly in women with estrogen/
progesterone positive breast cancers, although this evidence
is still emerging.13 Overall there is strong, consistent, and
dose-response evidence for an association between physical
activity and postmenopausal breast cancer.
The next largest body of evidence for an association between
physical activity and cancer exists for colon and colorectal can-
cers with 92 studies reported to date. Of these studies, there is
a stronger protective effect in 41 case-control studies (OR=0.66
[0.610.71]) than in 42 cohort studies (RR=0.81 [0.770.86]) that
reported effect estimates. Of the 48 studies that considered the
dose-response effect, 85% (n=41) found a statistically significant
inverse trend. No particular period in life was more likely associ-
ated with risk reduction since significant benefits were observed
for lifetime as well as early life, midlife, and recent physical activ-
ity. Likewise, there is equal benefit for both genders and no pattern
of association by body mass index.13 The benefit from physical
activity seems to apply equally to distal and proximal colon can-
cers.4 Overall, there is very consistent, strong, and dose-response
evidence for a beneficial effect of physical activity on colon and
colorectal cancer risk.
Endometrial Cancer
There is remarkably consistent evidence for an effect of physical
activity on endometrial cancer risk with 26 of 30 studies observ-
ing a reduced risk. The evidence suggests equally strong effects
from 12 cohort (RR=0.76 [0.690.84]) and 15 case-control studies
(OR=0.69 [0.620.78]) for which effect estimates were reported.
In addition, some evidence of inverse dose-response exists from
14 of 22 studies that examined this trend. Both recent and life-
time activities have been associated with endometrial cancer risk
reduction. There are various hypothesized subgroup effects but
none is strongly apparent in the studies that have been published
thus far. The average magnitude of risk reduction associated with
higher levels of physical activity and endometrial cancer is the
greatest of all cancer sites; hence the likelihood that being physi-
cally active reduces risk of this cancer is high.13

Prostate Cancer
RR/OR (95% CI) After breast and colon cancers, the third largest number of stud-
Breast ies that have been conducted on physical activity and cancer risk
Cohort (N = 44) 0.85 (0.81, 0.89)
Case Control (N = 54) 0.69 (0.64, 0.75) has been for prostate cancer with a total of 55 studies reported. Of
Colon these, only 23 studies have shown a risk reduction, and the average
Cohort (N = 42) 0.81 (0.77, 0.86)
Case Control (N = 41) 0.66 (0.61, 0.71) risk estimate for the highest versus least active study participants
Endometrial in these studies is under 10%. The effects are equally weak and not
Cohort (N = 12) 0.76 (0.69, 0.84) statistically significant in the 30 cohort and 22 case-control stud-
Case Control (N = 15) 0.69 (0.62, 0.78)
ies for which effect estimates were reported, with pooled estimates
Prostate
Cohort (N = 30) 0.95 (0.90, 1.00) of 0.95 (0.901.00) and 0.92 (0.791.07), respectively. Evidence for
Case Control (N = 22) 0.92 (0.79, 1.07)
inverse dose-response exists in 11 of 34 studies, and significant risk
Ovarian
Cohort (N = 11) 0.98 (0.77, 1.24) reductions were found in different periods in life. There are various
Case Control (N = 12) 0.72 (0.65, 0.79) hypothesized subgroup effects, with possibly a stronger protective
Lung effect of physical activity in higher stage, more aggressive prostate
Cohort (N = 18) 0.84 (0.76, 0.92)
Case Control (N = 9) 0.72 (0.60, 0.87) cancers that could be age-dependent, and possibly more benefit for
men under the age of 65. The evidence showing differing effects
of physical activity across racial subgroups is conflicting.13 Hence,
0.25 0.5 1 2
RR/OR overall, there is weak and inconsistent evidence for any benefit of
higher physical activity for prostate cancer prevention.
Figure3.1 Summary of relative risks (RR) and odds ratios (OR) pooled across
epidemiologic studies relating physical activity to cancer risk. Ovarian Cancer
Pooled effect estimates from random-effects models are presented for cohort
and case-control studies separately; estimates < 1 signify lower cancer risk that is Unlike endometrial cancer, the effect of physical activity on ovar-
associated with higher physical activity levels. N refers to the number of studies ian cancer is less evident, with only half of the reported studies
included in the pooled estimates; 95% CI, 95% confidence interval. demonstrating a risk reduction among the most physically active
18 Section I behavioral and psychological factors in cancer risk
study participants (11 of 24 studies). There is essentially no evi-
dence of any association across 11 cohort studies for which risk
estimates were reported, with a pooled risk estimate of 0.98 (0.77
1.24), whereas for 12 case-control studies with reported risk esti-
mates, a much stronger and consistent pooled effect was observed
(0.72 [0.650.79]). Some evidence for an inverse dose-response
effect was reported for 7 of 12 studies that examined this effect.
Both recent and lifetime activities were associated with a sig-
nificant risk reduction, and while histologic subtype of ovarian
cancer has been explored as an effect modifier in a few studies,
no consistent findings have emerged.13 Thus, overall, there is lim-
ited evidence supporting a protective effect of physical activity on
ovarian cancer risk.
Lung Cancer
About two-thirds of the studies (20 of 28)conducted thus far
on physical activity and lung cancer have found a risk reduc-
tion with higher levels of activity. The strength of the asso-
ciation is relatively high, based on pooled data available from
18 cohort studies, on average, showing a 16% reduction (0.84
[0.760.92]) and data from nine case-control studies showing
a 28% decrease in risk (0.72 [0.600.87]). There is evidence of
inverse dose-response in seven of nine studies that tested for
trends, and both recent and lifetime activities were associated
with significant risk reductions. There may be more benefit
from physical activity for preventing lung cancer in current and
former smokers and in men, although strong evidence of these
subgroup effects and others (e.g., histological subtype) remain
unclear, warranting further research.13 Overall, the association
between physical activity and lung cancer is likely, but more
research is needed to clarify the exact nature of the associa-
tion and the possibility of residual confounding due to tobacco
exposure.
ADIPOSITY
SEX HORMONES
androgens estrogens SHBG
METABOLIC DYSFUNCTION
PHYSICAL insulin glucose
ACTIVITY
Adipokines
INFLAMMATION
TNF- IL-6 CRP
Figure3.2 Hypothesized biological mechanisms relating physical inactivity to increased cancer risk.
BIOLOGICAL MECHANISMS
Extensive research has examined the causal mechanisms whereby
regular physical activity deters the development of cancer on a
cellular level.1,14 The effects of physical activity on carcinogenesis
are likely to be multifactorial and possibly affected by individual
factors, such as age, gender, and adiposity, in addition to activity-
related factors, such as the type, duration, frequency, and intensity
of activity. It is likely that the protective effects observed at each
cancer site represent a combination of common mechanisms and
site-specific effects. For each cancer site, tumor characteristics
(e.g., tumor subsite, histologic subtype, hormone receptor sta-
tus, mutation carrier status) may also modify the causal mecha-
nisms relating physical activity to cancer prevention. A variety
of plausible biological mechanisms for the association between
physical activity and cancer risk have been examined (Figure 3.2).
These mechanisms generally include changes in endogenous sex
hormone levels, metabolic hormone levels, and growth factors,
changes in inflammation and immune function, and, perhaps
most important, decreased obesity and abdominal adiposity. Here
we briefly discuss the most commonly investigated mechanisms.
Adiposity
A key mechanism that is proposed to mediate physical activity
effects on multiple cancer sites is a consequential reduction in
body fatness, in particular abdominal adiposity.15 Fat cells are
metabolically active and produce several signaling molecules,
including adipokines, as well as sex hormones, including estro-
gen. Circulating levels of several adipokines, including adiponec-
tin, leptin, and resistin, have been related to cancer risk (Table3.2)
and are believed to be causally implicated in carcinogenesis.
Increased abdominal obesity is related to decreased levels of adi-
ponectin, which has anti-inflammatory and insulin-sensitizing
BREAST,
ENDOMETRIAL, COLORECTAL
CANCERS
PROSTATE, BREAST,
ENDOMETRIAL, OVARIAN
CANCERS
BREAST, ENDOMETRIAL,
COLORECTAL CANCERS
MOST CANCERS
 Chapter3 physical activity and cancer 19

Table3.2 Proposed Biological Mechanisms Relating Physical Activity to Cancer Risk Reduction for Six Cancer Sites

Proposed Mechanism
Adiposity
(sex hormones, adipokines)
Inflammation and immune response
Metabolic dysfunction
(insulin resistance)
Sex hormones
Gastrointestinal transit time
Improved lung function
1 or downstream effects.
Possible Effects of Physical Activity Cancer Sites (Among Others) Possibly
Associated with the Proposed Mechanism1
Increases levels of the anti-inflammatory cytokine adiponectin Colon, postmenopausal breast, endometrial,
Decreases levels of pro-inflammatory cytokines leptin and resistin ovarian
Decreases estrogen synthesis in fat tissue
Reduces pro-inflammatory cytokines (IL-6, TNF-) by reducing body fat Colon, postmenopausal breast, endometrial,
Reduces macrophage-derived cytokines prostate, ovarian, lung
Enhances antioxidant and oxidative damage repair enzyme capacity
Reduces levels of reactive oxygen and nitrogen species
Improves insulin sensitivity and lowers plasma insulin through reduced Colon, breast, endometrial, ovarian, prostate
body fat and increased muscle mass
Increases levels of insulin-like growth factor binding proteins
Through reduced body fat, lowers levels of estrone, estradiol and Breast, endometrial, ovarian, prostate
freeestradiol
In premenopausal women, very high levels of exercise could lower
lifetime estrogen exposure by reducing the number of ovulatory cycles
Elevates levels of sex hormone binding globulin
Decreases time that food spends in colon and therefore interaction Colon
between colon mucosa and carcinogens is lower
Lowers concentration of carcinogenic material in lungs Lung

properties. Reduced abdominal obesity from physical activity
therefore increases circulating concentrations of and subsequent
beneficial effects from adiponectin.16 Body composition is also a
strong determinant of the beneficial effect of physical activity on
cancer risk because adipose tissue is the primary source of estro-
gen in postmenopausal women where aromatization of androgen
precursors occurs.
Inflammation and Immune Function
It is well accepted that alterations in normal levels of tissue-specific
and systemic inflammation are related to the development of can-
cer17 (Table 3.2). Cellular mediators of inflammation, including
C-reactive protein (CRP), cytokines such as interleukin-6 (IL-6),
tumor necrosis factor-alpha (TNF-), and decreased levels of
anti-inflammatory factors, such as adiponectin, have been linked
with increased cancer risk. The downstream effects of a chronic
pro-inflammatory state are believed to affect cancer through
several pathways, including increased DNA adduct formation,
increased angiogenesis, and altered anti-apoptotic signaling.18
Increased levels of pro-inflammatory factors, such as cytokines,
are produced by leukocytes such as macrophages and neutrophils.
Circulating cytokines and chemokines stimulate the production
of reactive oxygen species, a class of radical molecules with chemi-
cal properties capable of protein and DNA damage. In a vicious
cycle, reactive oxygen species (ROS) recruit additional inflamma-
tory cells, leading to further generation of free radicals. An over-
production of ROS or reactive nitrogen species (RNS) and limited
anti-oxidative capacities can result in unbalanced metabolism
and, consequently, oxidative stress.
Regular physical activity has been shown to reduce levels of
circulating inflammatory biomarkers and therefore is a proposed
mechanism for cancer risk reduction.19 Regular physical activity can
affect inflammation directly by reducing macrophage-produced
cytokine levels or indirectly through reduced cytokine produc-
tion from adipose tissue, as previously discussed. Asingle bout
of intense exercise is associated with a transient increase in ROS.
However, during habitual physical activity, the body develops an
adaptive response, often referred to as the exercise-induced oxi-
dative stress paradox. As part of this response, regular physical
activity enhances the capacity of enzymes for antioxidant and
oxidative damage repair. Enzymatic antioxidants can neutral-
ize over-generated ROS, and these enzymes are elevated among
women undergoing physical activity programs.20 These are both
likely causal mediators of the beneficial effects of physical activity
on the consequences of elevated systemic inflammation.
Metabolic Dysfunction and Insulin Resistance
Insulin resistance is a condition whereby cells progressively lose
the ability to uptake glucose in response to insulin, and the pan-
creas subsequently increases insulin production to compensate,
in a progressive cycle. Strong associations have been observed
between hyperinsulinemia as well as type II diabetes and risk at
several sites (Table 3.2). Insulin has established mitogenic proper-
ties on epithelial cells in vitro and can enhance the development
of tumors through several mechanisms, including by stimulating
cell proliferation or by inhibiting apoptosis. The insulin resistance
pathway may act synergistically with sex hormone and inflam-
mation pathways to influence breast cancer risk since insulin
increases sex hormone bioavailability by inhibiting hepatic syn-
thesis of sex hormone-binding globulin (SHBG). Insulin resis-
tance is also associated with increased levels of inflammatory
mediators, including various cytokines and adipokines.21,22
20 Section I behavioral and psychological factors in cancer risk

The insulin-like growth factors (IGF) family is a group of mol-
ecules that are directly involved in the functional pathways of
insulin activity, and several of the IGFs (IGF-1 and IGF-2) func-
tion in a similar mechanism to insulin, whereas IGF binding pro-
teins (BP) regulate the bioavailability of IGFs. There is in vitro
work that associates IGF-1 levels with breast cancer proliferation
and IGFBP-3 levels with inhibition of breast tumor cell growth;
however, epidemiologic studies are less clear regarding the con-
sequence of IGFs and IGFBPs in the context of physical activity,
insulin resistance, and cancer risk.23
Physical activity, both directly and indirectly through a reduc-
tion in adiposity, enhances insulin sensitivity and glucose uptake
by skeletal muscle. Acute bouts of physical activity improve insu-
lin sensitivity and glucose uptake in skeletal muscle tissue for up
to 12 hours, even among those with type II diabetes. Chronic
physical activity meanwhile results in prolonged insulin sensitiv-
ity improvements in addition to, and independent of, body com-
position changes.
Sex Hormones
Increased levels of circulating estrogens have been consistently
associated with increased risk of developing breast cancer, and
elevated unopposed estrogens are associated with increased endo-
metrial cancer risk (Table 3.2). Estrogen is believed to affect can-
cer through several mechanisms including stimulation of cellular
proliferation through their receptor-mediated hormonal activity
and direct genotoxic effects increasing mutation rates.24 Among
men, the effects of alterations in sex hormone levels (testosterone
or estrogens) from physical activity is not yet well known; how-
ever, research is currently underway.
In prospective studies of postmenopausal women, low lev-
els of physical activity were related to higher levels of estrone,
estradiol, and free estradiol, and lower levels of sex hormone-
binding globulin.14 As previously mentioned, physical activity
is chemo-protective with regard to estrogen, primarily through
a change in body composition. Physical activity, however, also
has effects on menstrual function and, in turn, direct effects
on circulating estrogens. Physical activity may be beneficial
among premenopausal women, as athletes and physically active
premenopausal women have delayed onset of menses, fewer
ovulatory cycles, and lower circulating levels of estrogen and
progesteroneall factors that are related to breast and endome-
trial cancer risk.14,25
Site-Specific Biologic Mechanisms
There are several biologic mechanisms that are unique to specific
sites in the association between physical activity and cancer devel-
opment. For example, for colon cancer, the mechanical action of
physical activity reduces the time that digested materials spend in
the colon.25 This reduction in colon transit time is hypothesized
to reduce the development of polyps within the colon and subse-
quent transformation into tumors. For lung cancer, it is unclear at
this point whether physical activity reduces lung cancer through
improved lung function and clearance of carcinogens from the
lung, or whether those who are physically active are more likely to
avoid active and passive exposure to tobacco.
PUBLIC HEALTH RECOMMENDATIONS
Several cancer agencies worldwide advocate physical activ-
ity guidelines for individuals that are intended to reduce cancer
rates in the general population (Table 3.3). No consensus has been
reached on the optimal timing and amount of physical activity
(i.e., type, duration, frequency, and intensity) for cancer preven-
tion. However, preliminary evidence suggests that the optimal
dose may differ for cancers at different sites. Vigorous activity
appears to be associated with a decrease in risk of colon cancer,
whereas even moderate activity decreases risk of breast and endo-
metrial cancers. The relevant time period for affecting carcino-
genesis is unknown, but the adoption of activity even relatively

Table3.3 Current Physical Activity Guidelines for Cancer Prevention by Organization

Source of Recommendation Activity Guidelines

American Institute for Cancer Research/
World Cancer Research Fund:Food, Nutrition, As fitness improves, aim for at least 60 minutes per day of moderate activity or
Physical Activity, and the Prevention of
Cancer:a Global Perspective (2007)
International Agency for Research on Cancer/
World Health Organization:advocates
GlobalRecommendations on Physical
Activityfor Health (2011)
American Cancer Society:Nutrition and
Physical Activity Guidelines for Cancer
Prevention (2012)
Canadian Cancer Society:advocates
CanadianSociety for Exercise Physiology
guidelines on physical activity (2011)
Moderate activity at least 30 minutes per day every day
30minutes per day of vigorous activity every day
Limit sedentary habits
For adults 1864years:at least 150 minutes of moderate-intensity or 75minutes
vigorous-intensity aerobic activity throughout the week (or equivalent
combination) in bouts of at least 10 minutes. For additional benefit, increase
moderate aerobic activity to 300 minutes per week or vigorous activity to 150
minutes per week of (or equivalent combination). Muscle-strengthening activities
involving major muscle groups 2 or more days a week.
For adults:at least 150 minutes of moderate intensity or 75 minutes of vigorous
intensity activity each week, or an equivalent combination, preferably spread
throughout the week.
Some physical activity above usual activity, no matter what ones level of activity
Limit sedentary behavior
For adults 1864years:at least 150 minutes per week of moderate-vigorous aerobic
activity in 10-minute bouts or more, as well as muscle- and bone-strengthening
exercise using major muscle groups 2 or more days per week

late in life has beneficial effects for some cancers. Furthermore,
while the magnitude of risk reduction from physical activity has
been estimated for different cancer sites, the true reduction could
be even greater when physical activity is combined with other
healthy lifestyle behaviors. The World Cancer Research Fund and
American Institute for Cancer Research identified physical activ-
ity as just one of eight lifestyle behaviors related to lower cancer
risk;12 the potentially additive or synergistic effects of exercise,
a healthy diet, and reduced body fatness on cancer risk are now
being investigated. Finally, it is important to recognize that indi-
vidual physical activity behavior will be affected by health pro-
motion messaging and by public policy. For example, providing
relevant contextual information and implementing widespread
changes to the built environment could make it easier for people
to choose and maintain a physically active lifestyle.
ACKNOWLEDGMENTS
The authors acknowledge the assistance of Qinggang Wang for esti-
mating the pooled relative risks and odds ratios and also Kimberlee
Bell for illustrating our biologic model. Dr.Friedenreich is sup-
ported by an Alberta InnovatesHealth Solutions Health Senior
Scholar Award and the Alberta Cancer Foundation Weekend to
End Womens Cancers Breast Cancer Chair.
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8. Friedenreich CM, Woolcott CG, McTiernan A, etal. Alberta physical
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and cancer prevention. In:Recent Results in Cancer Research.
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Rev Cancer. 2008;8(3):205211.
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17. Coussens LM, Werb Z. Inflammation and cancer. Nature.
2002;420(6917):860867.
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 CHAPTER4
Sun Exposure and Cancer Risk
Anne E.Cust, Afaf Girgis, and Bruce K.Armstrong
EPIDEMIOLOGY
Sun Exposure and Cancer of Exposed Body Sites
Skin cancers are highly preventable. Exposure to solar ultraviolet
radiation (UV) is responsible for the development of some 50%
90% of melanomas, 50%90% of basal cell carcinomas (BCC),
and 50%70% of squamous cell carcinomas (SCC) of skin glob-
ally.1 Ultraviolet radiation (UV) is also linked with ocular cancers
and other eye conditions such as cortical cataract and pterygium
(abenign growth of the conjunctiva).1
It is widely accepted that UV radiation causes skin cancer,
on the basis of both experimental and epidemiological data.2
However, the association of sun exposure with skin cancer risk
appears complex. Sun exposure that is intermittent in nature,
such as going on sunny holidays, and sunburn history are the UV
risk factors most strongly associated with melanoma. More con-
tinuous (chronic) sun exposure and occupational sun exposure do
not seem to increase melanoma risk and may in fact decrease it.3
Preventive strategies during childhood are particularly impor-
tant because childhood is a period of greatest susceptibility to
sun exposure effects; however, risk accumulates with sun expo-
sure throughout adulthood.2 SCCs are mainly associated with
total and occupational sun exposure, and BCCs (like melanoma)
from non-occupational or recreational sun exposure and a his-
tory of sunburn and presence of benign sun damage in the skin.2
There is also convincing evidence that indoor tanning is associ-
ated with melanoma and keratinocyte skin cancers.4,5 For people
who reported ever using indoor tanning devices compared with
those who never used them, the relative risk of disease was 1.20
(95% confidence interval [CI] 1.081.34) for melanoma, 1.67 (95%
CI 1.292.17) for SCC, and 1.29 (1.081.53) for BCC; these relative
risks were higher for people who used indoor tanning before the
age of 35years.
Sun Exposure and Internal Cancers
A systematic review of the epidemiological evidence suggests that
there is an inverse association between sun exposure and risk of
some internal cancers, namely colorectal, prostate, breast, and
non-Hodgkins lymphoma (NHL).6 The evidence is considered
strongest for an inverse association between sun exposure and
colorectal and prostate cancers; the findings were more hetero-
geneous for the association with breast cancer and NHL. It is not
yet possible to say whether these observed associations are causal,
since confounding with other lifestyle behaviors, such as diet and
physical activity, cannot be excluded completely. Paradoxically, a
quite strong positive association has been observed between sun
exposure and prostate cancer in Australia,7 a much higher UV
environment than most countries in which an inverse association
has been observed.
Anti-carcinogenic effects of vitamin D are the most common
mechanism suggested for observed inverse associations between
sun exposure and internal cancers. Vitamin D is produced in skin
following exposure to solar ultraviolet B radiation and is trans-
ported throughout the body in the bloodstream. Many in vitro stud-
ies have shown that high concentrations of vitamin D compounds
can inhibit cancer cell proliferation and, sometimes, can induce
differentiation (cell normalization).8 A number of prospective
epidemiological studies have shown that there is a modest inverse
association of plasma 25-hydroxy vitamin D (25[OH]D) with inci-
dence of some cancers,9 particularly colorectal cancer. There is,
though, inconsistent evidence for a protective effect of vitamin D in
the few randomized controlled trials in which the effect of vitamin
D supplementation, with or without supplementary calcium, on
cancer incidence has been examined (generally not as the primary
objective of the study).10 Other studies are underway.
Vitamin D seems unlikely to explain the reported positive asso-
ciation between sun exposure and prostate cancer. While U-shaped
associations between serum 25(OH)D and risks of internal cancer
have been reported, there is currently no established mechanism
by which high levels of vitamin D might increase cancer risk.
Immune-suppressive effects of sun exposure have been offered as a
possible explanation for an increase in risk of cancer at higher levels
of sun exposure;7 there is clear evidence that therapeutic immune
suppression increases the risk of many cancers. DNA damage in
circulating lymphocytes has also been observed in people with
higher levels of sun exposure, which raises the possibility of other
mechanisms,11 although it is yet to be established that the damage
observed in lymphocytes also occurs in solid organs.
RECOMMENDATIONS FOR
UVPROTECTION
Public UV protection messages usually focus on these key points:
Wear clothing that covers your arms and legs.
Use sunscreen with sun protective factor (SPF) 15 or higher, and
both UVA and UVB protection.

Wear a hat with a wide brim to shade your face, head, ears,
andneck.
Stay in the shade, especially during midday hours.
Wear sunglasses that wrap around and block both UVA and
UVB rays.
Avoid indoor tanning.
In Australia, these messages have been framed in a well-known
slogan: slip on sun-protective clothing; slop on SPF30 or
higher broad spectrum, water-resistant sunscreen 20 minutes
before going outdoors and reapply every two hours afterward;
slap on a broad-brimmed hat that protects your face, head, neck,
and ears; seek shade; and slide on sunglasses.
The sun protection messages focus on avoiding being outdoors
in the sun during the middle of the day when UV radiation lev-
els are strongest. However, messages about when and where sun
protection is required are complicated by the fact that solar UV
radiation varies by latitude and by season of the year. One strategy
that has been used to simplify the message is to focus on educating
the community about the UV Index, whereby the higher the UV
Index value, the greater the potential for damage to ones skin. Sun
protection is recommended when the UV Index is 3 or above, and
people are taught to think UV not heat.12
PSYCHOSOCIAL AND BEHAVIORAL
RESEARCH ON SUN EXPOSURE AND
SUNPROTECTION
Predictors of Sun Exposure and Sun
ProtectionBehaviors
Like most other health-related behaviors, changing personal sun
exposure and sun protection behaviors is challenging. Glanz and
Rimer13 highlight some key cognitive-behavioral concepts that
underlie the complexity of changing personal behavior:behavior
is mediated by cognitions (that is, what people know and think
affects how they act); knowledge is necessary for, but not sufficient
to produce, most behavior changes; and perceptions, motivations,
skills, and the social environment are key influences on behavior.
Knowledge of the dangers of excessive sun exposure and the ben-
efits of sun protection does not necessarily translate into behavior
change; it is clear that practical, social, psychological, and envi-
ronmental barriers must also be addressed.
A large cross-sectional online survey conducted by the mela-
noma genetics consortium (GenoMEL) of 8178 individuals across
Europe (73% of respondents), Australia (12%), the United States
(7%), and Israel (2%) found that despite widespread dissemination
of sun protection messages, half of all respondents and 27% of
those with a previous melanoma reported at least one severe sun-
burn during the previous 12months.14 They found the strongest
predictors of lack of sun protection behavior were perceived barri-
ers to protection (=0.44) and perceiving suntans as attractive community-level theories. Institutional factors, such as sun pro-
and healthy (=0.16). Perceived vulnerability to melanoma, tection policies for outdoor workers and primary school students,
perceived melanoma severity, and worry about melanoma showed
moderate positive correlations with sun protection. These find-
ings are consistent with a systematic review on this topic.15 Sun
protection was also higher among women, older people, people
with high-risk characteristics such as fair skin, and people living
Chapter4 sun exposure and cancer risk 23
at lower latitudes (i.e., high UV environments). Importantly, the
pattern of results was similar across the different countries, and
the same variables were significant predictors in all regions.14
Young people are a particularly challenging group in whom to
motivate risk-reducing behaviors, and their protective behaviors
remain low.14,16 Among adolescents and young adults, suntanning
and sun exposure behavior is strongly influenced by social norms,
body image concerns, and fashion.16 Younger people are more
likely to perceive a tan as attractive and healthy and to perceive
barriers to sun protection.14 Despite knowing the risks, many
adolescents and young adults still desire and actively seek a sun-
tan.14,16 Frequent users of indoor tanning often display signs and
symptoms consistent with an addictive disorder,17 suggesting the
need to address not only the physiologic effects of tanning but also
the psychosocial factors driving tanning behavior.
Health Behavior Theories
Skin cancer prevention programs are most likely to be effec-
tive and sustainable when they are based on theoretical models
which underpin a clear understanding of the factors that influ-
ence the target populations behavior, including their personal
beliefs and attitudes, and social and physical environments.18
In that regard, application of theory informs the interpretation
of research findings and understanding of the dynamic interac-
tions between behavior and the environmental and social context,
hence increasing the likelihood of effective translation of skin
cancer prevention strategies into public health policy or clinical
practice.6 Theories and their applications at the individual (intra-
personal), interpersonal, and community levels are relevant to
skin cancer prevention.16,18
Strategies intended to change peoples behavior can often be
derived from individual-level theories13 such as the health belief
model, stages of change model, theory of planned behavior, and
precaution adoption process model. These theories are important
for skin cancer prevention campaigns, as they are related to indi-
viduals knowledge, perceptions, attitudes, beliefs, intentions, and
decision-making processes about skin cancer prevention behav-
iors, barriers, and benefits. However, on their own, individual-level
theories are usually insufficient to change skin-cancer-related
behaviors; to be effective they need to be considered within the
social and environmental context.16,18
Some population-based strategies for reducing sun expo-
sure focus on changing the environment and thus draw on
community-level theories such as community organization,
which emphasizes community-driven approaches to assessing
and solving health and social problems.13 An example is the use
of shade sails in schools, whereby the health promotion agency,
schools, and the students work together to identify the problem of
lack of shade, decide where best to locate the structures, and raise
the funds required for them.19 Mass media campaigns that aim to
change social norms, such as tanning desirability, also draw on
have also been successful for reducing childhood sun exposure,16
as has advocacy aimed at legislative changes, such as the bans on
commercial indoor tanning in Australia and Brazil. 20
Theories at the interpersonal level, such as social cognitive
theory, explore the reciprocal exchanges between individuals and
24 Section I behavioral and psychological factors in cancer risk
their social environments, including family members, friends,
health professionals, and others. Interpersonal theories recognize
that the social environment influences an individuals feelings
and behaviors.13 They are particularly useful for examining and
understanding behaviors that relate to skin cancer risk, includ-
ing sun protective behaviors, time spent in the sun, and suntan-
ning, as these behaviors have a strong social influence component.
For example, in many societies, having a suntan is seen as being
healthy and attractive, and people do not cover up because of
peer pressure and fashion trends.16 As such, strategies based on
interpersonal-level theories appear to be the most powerful and
effective for skin cancer prevention.12,16 The Australian SunSmart
program12 is an example of a skin cancer prevention strategy that
is based on social cognitive theories of attitudes and behavior
change; it targets knowledge, attitudes, and intentions of individ-
uals, along with social and cultural norms, to promote sun protec-
tion behavior.
Interventions and Approaches
Table 4.1 summarizes some of the psychosocial and behavioral
skin cancer prevention interventions and approaches for different
target groups:general population, early childhood, adolescence,
and other high-risk groups. This table does not provide an exhaus-
tive list but gives an indication of the multidisciplinary and mul-
tidimensional approaches that are needed to reduce skin cancer
risk across different community groups. More details of these and
other interventions can be found in systematic reviews of these
topics.18,21
VITAMIN D, FRIEND OR FOE?
In a sun exposure and cancer risk context, there are four main rea-
sons that vitamin D is important to psycho-oncology. First, vita-
min D is essential for healthy bone development and maintaining
bone health. Second, vitamin D is hypothesized to have health
benefits that are independent of these skeletal effects, possibly pro-
tecting against some cancers and infections, autoimmune and car-
diovascular diseases, cognitive dysfunction, and depression.22,23
Third, irradiation of skin by solar UV B radiation prompts
vitamin D synthesis and makes an important contribution to
serum 25-hydroxy vitamin D concentration (the usual measure
of vitamin D status) in most populations (diet being the alterna-
tive source). Fourth, vitamin D insufficiency (30< 50nmol/L of
25-hydroxy vitamin D) and frank deficiency (< 30 nMol/L) are
quite common in fair-skinned as well as dark-skinned popula-
tions (who generally have a lower average serum 25-hydroxy vita-
min D concentrations),23 even in Australia,24 where the potential
for exposure of a largely fair-skinned population to solar UVB
radiation is probably the greatest in the world.
Messages about the health benefits of vitamin D and the harm-
ful effects of sun exposure are therefore in conflict, and health
professionals and their clients are easily confused about how
much vitamin D is required, whether it can be safely acquired
by prudent sun exposure, and whether more dietary fortification
with, or supplemental intake of, vitamin D is a necessary and safer
course. The issue has been additionally clouded by some scientists
promotion of a need for particularly high serum 25-hydoxy vita-
min D concentrations to ensure vitamin Ds hypothesized benefi-
cial effects against non-skeletal conditions.23
Content analysis of news media reports about sun protec-
tion issues showed increasing coverage of vitamin D issues over
14years to 2006.25 Recent quantitative and qualitative surveys in
the community have shown low knowledge about vitamin D and
lack of understanding of the balance message: that is, some
sunlight exposure each day for adequate vitamin D production,
but not so much that would lead to increased skin cancer risk.26
Moreover, some people reported going out into the sun or inten-
tionally tanning to improve their vitamin D status.
Recently published studies of physicians practice with respect
to sun exposure and vitamin D have found that sunshine, as well
as vitamin D supplements, is commonly prescribed for vitamin
D deficiency in the high UV environments of Australia and New
Zealand.27 Physicians also reported a trend toward recommend-
ing less sun protection in winter and, sometimes, in summer. It is
of concern that some doctors endorsed sun exposure during peak
UV times of the day, in summer as well as in winter, and com-
monly overestimated the amount of peak UV exposure in sum-
mer that was needed to gain or maintain vitamin D sufficiency.
Some doctors also expressed greater concern about vitamin D
deficiency than skin cancer in their patients.
A number of interested agencies, including national pub-
lic health agencies, cancer and osteoporosis organizations, and
professional organizations of dermatologists, have reviewed the
changing evidence about vitamin D and health and considered
what, if any, might be an acceptable balance between sun exposure
that is sufficient to maintain vitamin D sufficiency and protection
against skin cancer due to sun exposure. These guidelines inevita-
bly vary depending on the latitude of the population they address;
typically they advise sun protection during the middle of the day
in summer, when UVB levels are at their highest, and little or no
sun protection at times and in seasons when UVB levels are low
(characterized by a UV Index of less than 3). Some, particularly
dermatology societies, favor no relaxation in sun protection and
increased dietary intake or supplementation to ensure vitamin D
sufficiency. The research on which these recommendations have
been based is very limited, particularly with respect to how much
sun exposure will maintain vitamin D sufficiency, and none of the
recommendations has been evaluated for success in reducing vita-
min D insufficiency and not increasing skin cancer risk.
FUTURE DIRECTIONS
Further research is needed to clarify whether sun exposure is
causally related to risk of specific internal cancers, and to clar-
ify the role of vitamin D in carcinogenesis. Ongoing random-
ized controlled trials will help to determine whether vitamin D
supplementation provides cancer prevention benefits. To inform
the development of public health and clinical guidelines, future
research should also focus on clarifying how much sun exposure
is required to maintain vitamin D sufficiency for different popula-
tion groups, and determining the best ways to reduce vitamin D
insufficiency without increasing skin cancer risk.
Further research on psychosocial and behavioral skin cancer
prevention interventions should consider novel strategies based
on theoretical models that take into account the dynamic inter-
actions between personal behavior and the physical and social
environments. There have been increases in the understanding
of the genetic susceptibility to melanoma, advances in genetic
Table4.1 Summary of Psychosocial and Behavioral Skin Cancer Prevention Interventions and Approaches for Different Target Groups
Target Group
General population
Early childhood
Adolescence
Other high-risk groups (e.g.
genetically susceptible, high
occupational sun exposure,
immunosuppressed)
Aims
To increase knowledge and awareness of
skin cancer and its causes
To improve sun protection behaviors
To reduce excessive sun exposure
To improve early detection of melanoma
To identify high-risk individuals who
would benefit from closer follow-up and
surveillance
To provide information on prevention,
earlydiagnosis, and treatment of skin
cancer
To reduce the desirability of a tan
To reduce childrens sun exposure and
increase their sun protection behaviors
To improve parents/teachers/childrens
knowledge and awareness of:skin cancer,
risk factors, sun protection strategies
To improve parents and teachers
self-efficacy, such as confidence in their
ability to increase their child/childrens
sunprotection
To reduce perceived barriers to sunscreen
use and other forms of sun protection
To change attitudes
To increase sun protection policies at
schools
To change perceptions and attitudes, such
as tanning desirability
To increase awareness that young people
are susceptible to skin cancer
To reduce sun exposure and increase sun
protection intentions and behaviors
To reduce or stop indoor tanning
To reduce sun exposure and increase
sun protection in people at high risk of
developing skin cancer
To increase early detection among
high-riskgroups
To increase knowledge about skin cancer
risk and risk-reducing behaviors
Types of Interventions and Approaches Examples
Mass media public education, such as Slip! Slop! Slap! (Seek! Slide!)29
TVadvertisements, ratio, newspapers. Sunsmart1,30
andbillboards
Euromelanoma prevention campaign31
Protective clothing for swimming, golf,
cycling, and gardening and new shade
structures for home and beach use
Free-of-charge skin examinations for the
public
Providing shade in public areas and at
beaches
Interventions in recreational or tourism
settings
Targeted interventions that are SunSmart Schools program2
implemented in environments such SunWise school campaign32
as child-care centers, preschools, and
Tailored mailed newsletters33
primaryschools, such as promoting
hat-wearing, ensuring adequate shade
in the school grounds, and teaching
childrenabout sun protection in school
Protective clothing and swimwear
designed for children
Toolkits for policy development, such as
evaluation tools to assess schools current
sun protection practices and shade
availability, aids for curricula training and
integration into the classroom, and sun
protection policy options
Newsletter information and resources
Mass media campaigns aimed at young Indoor tanning examples35,36
adults Australian mass media campaigns:Wes
Increasing shade cover at high schools34 Bonny Testimonial; The Dark Side of
Interventions based on the Tanning; Tattoo (Cancer Institute NSW;
appearance-damaging effects of UV SunSmart)
exposure, such as UV photos Appearance-based interventions37
Policy-based interventions including Text messaging interventions38
changes to legislation
Coordinated, multilevel, trans-disciplinary
approaches to reduce indoor tanning
Genetic screening for people with a Genetic risk39
strongfamily history Interventions aimed at relatives of
Workplace policies for outdoor workers people with melanoma40,41
Providing shade in occupational settings SunSmart1,2
Family-based strategies within Go Sun Smart Worksite Health
melanoma-prone families Communication Campaign42
SUNWISE workplace intervention13
26 Section I behavioral and psychological factors in cancer risk
technologies, and uptake of genomic information for health pur-
poses. As such, one novel strategy could be to evaluate the effect
of an intervention that provides knowledge of personal genetic
risk of skin cancer on motivating risk-reducing behaviors in the
general population. Social and behavioral theory suggests that the
highly personalized nature of providing genetic risk feedback may
increase its motivational potency over standard approaches.28
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11. Nair-Shalliker V, Fenech M, Forder PM, Clements MS, Armstrong
BK. Sunlight and vitamin D affect DNA damage, cell division and
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12. Sinclair C, Foley P. Skin cancer prevention in Australia. Br J
Dermatol. 2009;161(suppl 3):116123.
13. Glanz K, Rimer BK. Theory at a Glance:AGuide for Health
Promotion Practice. 2nd ed. Vol. NIH Publication No. 05-3896:US
Department of Health and Human Services. http://www.cancer.gov/
cancertopics/cancerlibrary/theory.pdf. Bethesda, MD:US National
Cancer Institute; 2005.
14. Branstrom R, Kasparian NA, Chang YM, etal. Predictors of sun
protection behaviors and severe sunburn in an international online
study. Cancer Epidem Biomar Prev. 2010;19:21992210.
15. Garside R, Pearson M, Moxham T. What influences the uptake
ofinformation to prevent skin cancer? a systematic review and
synthesis of qualitative research. Health Educ Res. 2010;25:
162182.
16. Montague M, Borland R, Sinclair C. Slip! Slop! Slap! and SunSmart,
19802000:skin cancer control and 20years of population-based
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17. Kourosh AS, Harrington CR, Adinoff B. Tanning as a behavioral
addiction. Am J Drug Alcohol Abuse. 2010;36:284290.
18. Saraiya M, Glanz K, Briss PA, etal. Interventions to prevent skin can-
cer by reducing exposure to ultraviolet radiation:a systematic review.
Am J Prev Med. 2004;27:422466.
19. Dobbinson SJ, White V, Wakefield MA, etal. Adolescents use of pur-
pose built shade in secondary schools:cluster randomised controlled
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20. Watson M, Holman DM, Fox KA, etal. Preventing skin cancer
through reduction of indoor tanning:current evidence. Am J Prev
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21. Horsham C, Auster J, Sendall MC, etal. Interventions to decrease
skin cancer risk in outdoor workers:update to a 2007 systematic
review. BMC Res Notes. 2014;7:10.
22. Holick MF. Vitamin D and sunlight:strategies for cancer prevention
and other health benefits. Clin J Am Soc Nephro 2008;3(5):15481554.
23. IOM (Institute of Medicine). Dietary Reference Intakes for Calcium
and Vitamin D. Washington, DC:The National Academies Press;
2011.
24. Kimlin M, Harrison S, Nowak M, Moore M, Brodie A, Lang C.
Does a high UV environment ensure adequate vitamin D status? J
Photochem Photobiol B. 2007 Dec 14;89(23):139147.
25. Scully M, Wakefield M, Dixon H. Trends in news coverage about skin
cancer prevention, 19932006:increasingly mixed messages for the
public. Aust N Z J Public Health. 2008 Oct;32(5):461466.
26. Bonevski B, Bryant J, Lambert S, Brozek I, Rock V. The ABC of vita-
min D:a qualitative study of the knowledge and attitudes regarding
vitamin D deficiency amongst selected population groups. Nutrients.
2013 Mar 15;5(3):915927.
27. Reeder AI, Jopson JA, Gray AR. Prescribing sunshine:a national,
cross-sectional survey of 1,089 New Zealand general practitioners
regarding their sun exposure and vitamin D perceptions, and advice
provided to patients. BMC Fam Pract. 2012 Aug 17;13:85.
28. McBride CM, Koehly LM, Sanderson SC, Kaphingst KA. The behav-
ioral response to personalized genetic information:will genetic risk
profiles motivate individuals and families to choose more healthful
behaviors? Annu Rev Public Health. 2010;31:89103.
29. Montague M, Borland R, Sinclair C. Slip! Slop! Slap! and SunSmart,
19802000:Skin cancer control and 20years of population-based
campaigning. Health Educ Behav. 2001;28:290305.
30. Sinclair C, Foley P. Skin cancer prevention in Australia. Br J
Dermatol. 2009;161(suppl 3):116123.
31. Stratigos AJ, Forsea AM, van der Leest RJ, etal. Euromelanoma:a
dermatology-led European campaign against nonmelanoma skin
cancer and cutaneous melanoma:past, present and future. Br J
Dermatol. 2012;167(suppl 2):99104.
32. Emmons KM, Geller AC, Viswanath V, etal. The SunWise Policy
intervention for school-based sun protection:a pilot study. J Sch
Nurs. 2008;24:215221.
33. Crane LA, Asdigian NL, Baron AE, etal. Mailed intervention to pro-
mote sun protection of children:a randomized controlled trial. Am J
Prev Med. 2012;43:399410.
34. Dobbinson SJ, White V, Wakefield MA, etal. Adolescents use of pur-
pose built shade in secondary schools:cluster randomised controlled
trial. BMJ. 2009;338:b95.
35. Watson M, Holman DM, Fox KA, etal. Preventing skin cancer
through reduction of indoor tanning:current evidence. Am J Prev
Med. 2013;44:682689.
36. Holman DM, Fox KA, Glenn JD, etal. Strategies to reduce indoor
tanning:current research gaps and future opportunities for preven-
tion. Am J Prev Med. 2013;44:672681.
37. Williams AL, Grogan S, Clark-Carter D, Buckley E. Appearance-
based interventions to reduce ultraviolet exposure and/or increase
sun protection intentions and behaviours:a systematic review and
meta-analyses. Br J Health Psychol. 2013;18:182217.
38. Janda M, Youl P, Marshall AL, Soyer HP, Baade P. The HealthyTexts
study:a randomized controlled trial to improve skin cancer pre-
vention behaviors among young people. Contemp Clin Trials.
2013;35:159167.

39. Glanz K, Volpicelli K, Kanetsky PA, etal. Melanoma genetic testing,
counseling, and adherence to skin cancer prevention and detection
behaviors. Cancer Epidem Biomar Prev. 2013;22:607614.
40. Geller AC, Emmons KM, Brooks DR, etal. A randomized trial to
improve early detection and prevention practices among siblings of
melanoma patients. Cancer 2006;107:806814.
Chapter4 sun exposure and cancer risk 27
41. Gritz ER, Tripp MK, Peterson SK, etal. Randomized controlled trial
of a sun protection intervention for children of melanoma survivors.
Cancer Epidem Biomar Prev. 2013;22:18131824.
42. Horsham C, Auster J, Sendall MC, etal. Interventions to decrease
skin cancer risk in outdoor workers:update to a 2007 systematic
review. BMC Res Notes. 2014;7:10.
 CHAPTER5
APsychosocial Perspective
on Socioeconomic
Disparities in Cancer
Sara Fernandes-Taylor and Joan R.Bloom
The challenge in overcoming cancer is not only to find therapies that will
prevent or arrest the disease quickly, but also to map the middle ground of
survivorship and minimize its medical and social hazards.
These words of physician and cancer survivor Hugh Mullan1
epitomize the focus of this chapter:how to understand the social
hazards affecting the development and course of cancer. Abetter
understanding of these hazards may lead to measures that min-
imize the risk. Mullans notion of social hazards comprises the
concept of socioeconomic status (SES). These social hazards can
be found at all points along the cancer care continuum, beginning
with the etiology of cancer, screening and early detection, diag-
nosis and treatment, survivorship, and mortality. Even though
cancer outcomes have improved in the past two decades, those
individuals with lower SES have not improved as quickly as those
with higher SES.
SOCIOECONOMIC STATUS IN
HEALTHRESEARCH:MEASUREMENT
ANDPATHWAYS
Taking into account the complexities and multiple components of
the construct, Krieger, Williams, and Moss2 define SES as follows:
An aggregate concept... linked to both childhood and adult social
class position. Resource-based measures refer to material and social
resources and assets, including income, wealth, educational creden-
tials; terms used to describe inadequate resources include poverty
and deprivation. Prestige-based measures refer to [an] individuals
rank or status in a social hierarchy, typically evaluated with refer-
ence to peoples access to and consumption of goods, services, and
knowledge, as linked to their occupational prestige, income, and
educational level.
This definition of SES underscores (1)the various elements of
SESeducation, wealth, income, education, occupation; (2)the
dynamic nature of SES over the life span; and (3)the levels of anal-
ysis at which SES can be measuredindividual, family, house-
hold, neighborhood, and so on. Each element likely affects health
via distinct pathways, and a significant lack of precision and reli-
ability underlies SES measures in health research.
The social and behavioral pathways linking SES to health
are numerous. Individuals with more education are likely to
have better information-processing and literacy skills, greater
health-related knowledge, increased ability to navigate bureau-
cracies, more social prestige, and better interactions with health
professionals. 3 In addition, education is indicative of behaviors
that contribute to good health (e.g., gym membership, a good
diet, insurance, etc.).2 However, education does not serve as an
adequate proxy for income and wealth. 3 Economic resources,
commonly income and wealth, lead to better health via access to
material goods and services, such as nutrition, recreational facili-
ties, housing, and healthcare.4 In addition, low-income individu-
als may experience chronic stress related to job insecurity and
financial strain, greater environmental exposures to toxins both at
work and at home, and less social support, which in turn adversely
affect health.4 An increased prevalence of behavioral risk factors
for poor health, such as smoking, alcohol consumption, and a sed-
entary lifestyle, is also found among lower-income populations. 5
Occupation provides a link between education and income, and
positions individuals in a social structure, serving as a proxy for
both prestige and skill. 2 Furthermore, occupation accounts for
salient environmental conditions, such as an individuals control
over his or her work, exposure to toxins, and the psychological
demands of a given job.4
Indices that compile multiple measures of SES (for example,
income, occupation and education) fall into two general catego-
ries:(1)material and social deprivation measures, and (2)social
standing and prestige-based measures.2 Index measures, if not
validated, can conflate the various pathways by which SES affects
health.2 Geographically aggregated measures of SES, common in
health disparities research, may be neighborhoods, census tracts,
census blocks, census block groups, zip/postal codes, county/states,
or general regions of a country.2 Area-level measures represent the
architectural, social, and service environments that affect indi-
viduals health via multiple pathways, such as recreation areas,

tobacco and alcohol advertisements, noise and crowding, and
access to grocers carrying fresh produce.4 These measures also rep-
resent geographic access to medical care and pharmacies. Overall,
SES is a term that encompasses multiple individual- and area-level
social characteristics. These characteristics, in turn, produce
health disparities that are (1)systematic, (2)socially produced, and
(3)unfair.6 Moreover, growing income inequalities in the United
States and worldwide will likely lead to greater socioeconomic
health disparities.6 Therefore, a better understanding of the links
between SES and health is essential to both research and policy.
INCIDENCE AND ETIOLOGY
Cancer incidence refers to the number of newly diagnosed cases
and is often expressed as the absolute number of new cases in a
given year. Incidence may also be expressed as the rate of new
cases per 100,000 people, allowing for comparison between differ-
ent populations as well as the identification of trends within popu-
lations over time.7 Cancer incidence is related to SES both directly
and inversely. The incidence of some types of cancer, such as lung,
increases with decreasing SES. The incidence of other types of
cancer, such as breast and prostate, has historically increased with
increasing SES. In addition, socioeconomic gradients for cancer
incidence differ among nations,7 and the availability and quality
of data are variable. Therefore, global estimates of cancer inci-
dence involve extrapolation and best guesses, but represent the
best available knowledge.7
At a global level, the incidence of some cancers is more prev-
alent among low-resource, or developing, countries, while
high-resource, or developed/industrialized, nations have higher
rates of other cancers. Discrepancies in cancer incidence among
nations are often explained by differences in access to preven-
tive healthcare services and differential patterns of behavioral
risk, such as smoking. Although differences in cancer incidence
between low- and high-resource countries are not true socioeco-
nomic disparities, they reflect systematic differences between
those areas of the world with high income and those with rela-
tively low income. As the quality and availability of global cancer
incidence data increase, between-nation disparities and interna-
tionally pooled data will likely become central in understanding
SES-related cancer incidence patterns. Therefore, these dispari-
ties are summarized by cancer type. The cancer types discussed
encompass some of the most common cancers in the world, with
notable SES gradients among men and women in both low- and
high-resource countries.7 In addition, within-nation, SES-related
patterns of cancer incidence and etiology are discussed.
Prostate Cancer
Prostate cancer is the most common type of cancer diagnosed
among men in high-resource nations.7 The prevalence of prostate
cancer in high-resource nations may be partially explained by the
higher rates of screening and prostate-specific antigen (PSA) test-
ing in those nations, which lead to the detection of cancers that
would not otherwise be discovered.8 Within countries, prostate
cancer tends to be more prevalent among high SES individuals
than among people of low SES. This observed trend may be due
to lower utilization of preventive care among low SES individuals,
although observed associations between occupation and prostate
cancer incidence are less readily explained.8
Chapter5 socioeconomic disparities 29
This trend is changing in the United States and the United
Kingdom. Although prostate cancer incidence was once higher
among low-poverty counties, incidence rates in high-poverty
counties now surpass those in low-poverty counties.9 However,
the inverse association between prostate cancer incidence and SES
has persisted in Scandinavian countries such as Denmark.10
Lung Cancer
Lung cancer is the second most common cancer diagnosed among
men and third among women in high-resource nations. Among
low-resource nations, however, lung cancer is the most common
type of cancer among men (fourth among women), due largely to
high rates of tobacco smoking.7 Lung cancer is also more preva-
lent among low SES populations within countries. High rates of
smoking, exposure to air pollution, and occupational hazards
(e.g., asbestos exposure) explain lung cancer incidence among low
SES individuals.11 In the United States, incidence rates are 12%
higher among men and 11% higher among women in areas of high
poverty compared to areas of low poverty.9 Similar results have
been obtained in Europe.12
Colorectal Cancers
Among men and women in high-resource countries, colon cancer
is the second most commonly diagnosed cancer.7 The high inci-
dence of colorectal cancer in developed nations is explained by
high rates of meat and animal fat consumption, low fiber intake,
and physical inactivity.7 Nonetheless, the relationship between
SES and colon cancer incidence within nations is relatively incon-
sistent. Major risk factors for colon cancer were once more preva-
lent among high SES populations, but have recently become more
common among low SES communities. Because colon cancer
develops over a long time, the reversal of risk factor prevalence in
high versus low SES populations may explain the current lack of a
definitive association between SES and colon cancer.13
Breast Cancer
In women, breast cancer is the most common type of cancer in
both high- and low-resource countries, although breast cancer
rates in high-resource nations are higher. Porter14 suggests that
recent increases in breast cancer incidence rates in low-resource
nations are due partly to the Westernization of the developing
world, including the widespread adoption of behavioral risk fac-
tors for breast cancer that have historically been more prevalent in
developed countriescertain dietary patterns, decreased physical
activity, delayed and decreased childbearing, increased exposure
to hormones (via birth control and hormone replacement ther-
apy), and lower rates of breastfeeding. However, higher rates of
breast cancer in high-resource countries have also been attributed
to widespread screening, which, like prostate cancer, may result
in the detection of cancers that would not otherwise be found.
Within countries, breast cancer incidence is higher among high
SES women due to the aforementioned risk factors, as well as rela-
tively early menarche and later menopause.14
SCREENING AND DIAGNOSIS
Screening for Asymptomatic Disease
Screening is the major way that cancer can be prevented in some
types (e.g., cervical, skin, and colorectal cancer). Preventing
30 Section I behavioral and psychological factors in cancer risk
cancers from occurring or detecting cancers at early stages usually
means that there are more options for treatment and better out-
comes. In the United States, the gold standard for cancer screening
tests is that screening reduces mortality. Currently, the only can-
cers for which this standard has been demonstrated are for cancers
of the breast, cervix, and colon/rectum. There are both national
and international studies indicating that socioeconomic factors,
regardless of how they are measured, are related to screening. The
working poor in the United States are significantly less likely to
receive prostate cancer and cholesterol screening but not cervi-
cal or breast cancer screening.15 Alarge, cross-sectional study of
French women found that mammography screening was related to
income and education,16 similar to other Western nations.
In general, screening programs are more likely to be found
in high-resource countries than in middle- and low-resource
countries. Measures of screening program effectiveness include
the success of initial efforts to enroll the target population, high
rescreening rates, and timely diagnosis and treatment of cancers.
An example of such a screening program is the National Breast and
Cervical Cancer Early Detection Program (NBCCEDP) created in
1991 by the US Centers for Disease Control and Prevention.17 For
the reasons described above, it focuses on low-income women who
are uninsured or under-insured. The program has been successful
in enrolling its target population (minority women), somewhat
successful in rescreening efforts, and timely in provision of diag-
nosis and treatment relative to comparisons. Although screen-
ing programs generally do not appear to reduce SES disparities,
cost-reducing and geographical barrier-reducing strategies do.18
Primary Access to Care Versus Socioeconomic Status
Primary access to care refers to having health insurance and a
physician or access to another source of preventive care.19 Even
where there is universal primary access, the problem of SES dis-
parities in the provision of primary and secondary prevention
through cancer screening persists.16 Several explanations of this
phenomenon exist. The working poor may have limited opportu-
nity to receive preventive care, physicians providing care to low
SES communities are less likely to provide recommended primary
care, and/or underutilization of primary care reflects widespread
beliefs in low SES communities.20
CANCER TREATMENT
Concerns have been raised that diagnostic delays and failure to
receive standard treatment are related to SES. Sources of diag-
nostic delay include the time between screening for cancer and
entering the healthcare system, as well as the systems slow
responsiveness to people already in the medical care system.
These delays are often a result of lack of coordination between
systems (i.e., the screening program and the treatment system)
or bureaucratic barriers within one system. For example, in the
United Kingdom, Neal and Allgar21 found systematic diagnos-
tic delays for six cancers among lower social classes. In Italy,
researchers found that being admitted with a more advanced or
urgent disease as well as having longer intervals between onset of
symptoms, surgical referral, and hospital admission were more
common among less educated individuals.22 Receiving state-of-
the-art treatment is another potential source of inequality due
to socioeconomic factors. Studies of treatment outcomes where
patients have equal access to comprehensive cancer treatment
(including supportive care) demonstrate that similar treatment
yields similar outcomes.23 Patient-level factors, such as education
or literacy, or physician-level factors, such as subtle prejudice,
may affect the treatment that patients are offered and/or select.
For example, in the United States, low SES is associated with
non-receipt of surgical treatment and the likelihood of receiv-
ing breast-conserving treatment among those receiving surgery,
controlling for race/ethnicity, Medicaid enrollment, and clinical
factors.24 Socioeconomic disparities in palliative care are gener-
ally due to the lack of hospice care and pain management. For
example, Morrison etal. 25 found that pharmacies in low-income
neighborhoods failed to stock opioid analgesics, whereas pharma-
cies in higher-income neighborhoods had plentiful stocks.
High-resource countries are more able to provide state-of-
the-art treatment. However, across the globe, there are dif-
ferences in the availability of state-of-the-art treatment. This
is true even when the provision of such treatment would be
cost-effective, as in the provision of radiotherapy in low- and
middle-resource countries, 26 where the proportion of cancer
cases will increase from 60% to 70% by the year 2020. Most coun-
tries in this group have limited access to radiotherapy, and many
countries in Asia and Africa have no service capability at all.
Moreover, new technologies such as gene profiling, measurement
of circulating tumor cells, and proteomics are becoming major
tools for prognostic assessment and prediction of response to cer-
tain treatments. Lack of access among low SES individuals and in
low-income countries may result in unprecedented inequalities
in cancer care.
MORTALITY
According to Parkin and colleagues,7 mortality is the num-
ber of deaths occurring, and the mortality rate is the number
of deaths per 100,000 persons per year. Mortality is the product
of the incidence and the fatality for a given cancer. Although
SES-incidence gradients for cancer vary by cancer site, the bur-
den of cancer mortality disproportionately falls on people of
lower SES regardless of the site, due to disparities in psychoso-
cial factors, health behaviors, access to care, screening, treat-
ment, and other areas of care outlined in the previous sections.
In addition, low-resource countries largely bear the burden of
cancer mortality.
International Patterns of Cancer Mortality
In 2012, the International Agency for Research on Cancer
reported an estimated 8.2million cancer deaths worldwide. The
disproportionate burden of cancer mortality on low-resource
countries is illustrated by Figure 5.1, 27 which depicts the 2012
global estimates for cancer incidence and mortality by country.
Low-resource countries have disproportionately high mortality
rates from cancers despite higher incidence rates in high-resource
countries. Whereas cancer incidence rates are highest in North
America, Western and Northern Europe, and Australia, mor-
tality is disproportionately high in the Caribbean and parts of
Africa. Disparities in certain types of cancers (e.g., breast and
prostate) are most often attributed to the differential provision of
screening and appropriate treatment in low- versus high-income
countries.
 Chapter5 socioeconomic disparities 31

Male Female
Australia/New Zealand
Northern America
Western Europe
Northern Europe
More developed regions
Southern Europe
Central and Eastern Europe
Polynesia
South America
Eastern Asia
Caribbean
Southern Africa
World
Micronesia
Western Asia
Melanesia
Less developed regions
South-Eastern Asia
Eastern Africa
Central America
Northern Africa
Middle Africa
South-Central Asia
Western Africa

400 300 200 100 0 100 200 300 400

Incidence
GLOBOCAN 2012 (IARC) Mortality
Estimated age-standardised rates (World) per 100,000

GLOBOCAN 2012 (IARC), Section of Cancer information (29/1/2014)

Figure5.1 Age-standardized incidence and mortality rates for cancer by country.Reprinted from CancerMondial. International Agency for Research on Cancer,
Globocan 2012 Cancer Fact Sheets. http://www-dep.iarc.fr/. Accessed January 15, 2014.

Within-Country SES Patterns of Cancer Mortality
Within countries, people of lower SES have higher cancer mortal-
ity rates than those of high SES. This is true both in countries with
universal access to care and in countries without universal access,
such as the United States and Eastern Europe.9 Some research still
notes higher colorectal and breast cancer mortality among high
SES individuals, although these trends appear to be reversing.9
Although differential stage at diagnosis and treatment factors are
the most widely cited reasons for the SES mortality gradient,28 a
number of studies have found independent associations between
cancer mortality and SES after controlling for stage of disease and
treatment/surgery factors.24
In addition to disease stage and treatment factors, some of the
socioeconomic disparities in cancer mortality are explained by
SES disparities in all-cause mortality. Additional factors that
may contribute to SES-cancer (and all-cause) mortality gradients
are differences in the psychosocial characteristics of low versus
high SES individuals and the higher prevalence of comorbid con-
ditions in low SES populations. Widespread differences in cop-
ing styles and social support are hypothesized to contribute to
SES-cancer mortality patterns, but evidence is scant. 29 Moreover,
psychosocial factors, such as coping and social support, are
known to contribute to health in general via immunosuppressive
endocrine pathways; fewer coping skills and low social support
are likely more prevalent among low SES communities.4 In addi-
tion, poor management of comorbidity and chronic stress from,
for example, financial insecurity may contribute to poorer health
and subsequent cancer fatalities among low SES individuals.4
Overall, the psychosocial and behavioral factors that contribute
to SES disparities in cancer mortality warrant further research.
32 Section I behavioral and psychological factors in cancer risk
Between-Country Differences and Time Trends in
SES-Cancer Mortality
Despite an overall negative SES-cancer mortality gradient,
patterns vary between countries and by site. Although breast
cancer incidence rates are highest in Western and Northern
Europe, mortality is highest in Southern Europe, where the
mortality-incidence ratio is high, and Northern Europe, where
mortality is consummate with high incidence rates. Colorectal
cancer mortality rates follow the incidence gradient, with some
exceptions, such as Moldova and Poland, where mortality rates
are disproportionately high. 30 These international trends are
related to gross national product, national health expenditures,
unemployment, smoking, alcohol consumption, and air quality,
among other factors. In France, England/Wales, Scotland, and
the United States, overall cancer mortality is declining, while
SES gaps in cancer mortality are widening.31 In the United States,
socioeconomic inequalities in cancer mortality are frequently
discussed in parallel with racial disparities, which are pervasive
in the United States. For example, black men bear a significant
mortality burden from prostate cancer8 and have significantly
higher cancer mortality than other demographic groups in the
United States. However, within each race/ethnic group, socio-
economic disparities in cancer mortality have persisted, despite
stabilized or decreasing overall cancer mortality.9 Although race
has historically been used as a proxy for SES in US research, race
has been shown to be an inappropriate measure of SES, and that
practice has largely ceased.
FROM CANCER PATIENT TO
CANCERSURVIVOR
Late Effects of Treatment
There is some evidence that indicators of ones SES influence the
late effects of treatment. In a large Canadian study of pediat-
ric cancer survivors, survivors were more likely than matched
controls to have problems at school, such as repeating a grade
or being in special programs, to have fewer friends, and to be
less likely to have a friend as a confidant. These educational and
social problems were greater if the cancer survivor had cranial
irradiation, but were less likely if the child had higher self-esteem
and if his or her parents had postsecondary education. 32 In this
case, increased educational level of the family appears to have
mitigated the late effects of the treatment. Although there is
limited direct evidence of the relationship between SES and late
effects of cancer and its treatment, some indirect evidence indi-
cates that people of lower SES report poorer quality of life after
cancer. 33
Reintegrating into Society:Work and Income
Regardless of the type of cancer or the country in which the
study takes place, most research reports that cancer survivors,
compared to cancer-free controls of the same age and gender, are
less likely to be working and are more likely to retire early. And
for those survivors who lose their jobs, re-employment may take
more time. When mediating factors are considered, researchers
inevitably find that survivors of lower SES, whether measured
by income, education, or place of residence, are more likely to be
out of the workforce either by their own choice (retirement), their
health, or involuntary separation and slower re-employment. 33
These income reductions have consequences for survivors access
to resources to maintain their health.
Access to Resources to Maintain Health
There are few studies of the relationship between secondary access
factors and SES among cancer survivors. Secondary access fac-
tors focus on the way in which care is provided once a person has
entered the system. These can include the difficulties in navigating
complex bureaucratic systems in seeking care and the characteris-
tics of the systems themselves that are not welcoming. Historically,
cancer care services have been fragmented and poorly coordinated
from the perspective of the survivor. This makes access particu-
larly problematic for people who have limited health literacy, who
are poor, and who have less education. Accordingly, the impact
of cancer is found to be greater for individuals with poorer living
conditions, which serves as evidence of lower SES.33 In addition,
affluent patients are more likely to receive information from pro-
viders and to report using health information sources external to
the clinical encounter, such as the Internet.
CONCLUSIONS AND IMPLICATIONS
The association between SES and cancer is established for all
points along the cancer care continuum: prevention (primary,
secondary, tertiary), incidence, etiology, screening, diagnosis,
access to care (including clinical trials), treatment, survival, mor-
bidity, and mortality. The sources of these inequalities vary and
are attributed to a combination of environmental, biological,
behavioral, psychosocial, and healthcare factors. The interplay
of these factors accounts for much of the observed inequalities in
the burden of cancer, but it also makes the association between
SES and cancer particularly complex. Accordingly, SES is mea-
sured in a multitude of different ways, and the pathways through
which SES affects cancer initiation, promotion, and progression
are not completely understood. Furthermore, the multiple sources
of inequality are rarely accounted for in a single research study.
Often, population-based datasets measure SES inadequately, and
rarely do they account for the various psychological and behav-
ioral variables that may generate SES inequalities in cancer inci-
dence, treatment, and outcomes.
Another fundamental feature of cancer disparities is their
dynamic nature. The associations between SES and cancer change
radically by place and time period. By and large, SES disparities
in cancer mortality appear to be widening. Moreover, cancer inci-
dence patterns have altered significantly in the past 30years. For
example, breast and colorectal cancers, which have historically
been more prevalent among high SES populations in the United
States, are now more prevalent in low SES regions.9 These longitu-
dinal patterns have been attributed in part to widespread changes
in behavior that are systematic by SES. This phenomenon invites
the question:How and why are risk factors and behavioral pat-
terns clustered according to socioeconomic position?
A number of approaches are essential to understanding and
mitigating SES disparities in cancer. From a research perspective,
the utilization of population-based, longitudinal public health
data systems to monitor, understand, and alleviate SES-related
cancer inequalities is essential.34 In addition to research efforts
in SES disparities, policy interventions are needed to mitigate

persistent and sometimes widening SES health disparities. Adler
and her colleagues35 outline policies that fall under two general
goals:(1)policy interventions to lessen income, educational, and
occupation inequalities; and (2)policy interventions to decrease
the health-related impact of being low SES. Policies that fall under
the former goal include equalizing access to quality primary and
secondary education, eliminating financial barriers to higher
education, minimum wage increases, tax credits, fiscal policies
that encourage financial security, and opportunities for job skills
training. Policies that fall under the latter goal include provid-
ing affordable housing, restricting noise and pollution, reducing
crime, decreasing stress and exposure to toxins in the workplace,
and promoting health behaviors. This bilateral approach to reduc-
ing health disparities would work both to abolish inequalities in
health that are systematic by SES and to change the underlying
social structure that creates disparities.
Overall, socioeconomic inequalities in cancer remain pervasive
both globally and within individual countries. The pathways by
which SES affects cancer incidence, care, and survival are numer-
ous and complicated, and advances in research are needed to
fully understand and document the extent of these disparities.
However, a significant evidence base exists for cancer disparities,
and policy interventions are currently needed to begin to address
these disparities.
ACKNOWLEDGMENT
We would like to acknowledge NCI grant U54 CA153506 in
thechapter.
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 CHAPTER6
Psychosocial Factors
Christoffer Johansen
INTRODUCTION
This topic covers many risk factors, and the scientific literature on
their role in cancer causation has a long history. Nevertheless, in
scientific studies published during the past 75years and in reviews
of the literature, little is said about cancer causation as such. It is
important that this subject be raised, in order to emphasize that
the criteria for causation originally stated by Austin Bradford
Hill in the early 1960s also apply to psychosocial risk factors. Hill
(1965)1 suggested that the following issues be considered to distin-
guish association from causation:temporality, coherence, consis-
tency, specificity, biological gradient, strength of the association,
analogy, and biological plausibility. Hill stated, None of these
nine standards can bring indisputable evidence for or against the
cause-and-effect hypothesis and none can be required as a sine
qua non.1 This cannot be considered a final list of factors that
establish causality, but they must be taken into account in deter-
mining the weight of evidence. Hill (1965) also warned against
overemphasis on statistical significance testing, writing, The glit-
ter of the t table diverts attention from the inadequacies of the
fare.1 The theory of causality has developed since Hills time,
increasing the complexity of establishing causality and requiring
new levels of sophistication in epidemiology.2
The overwhelming body of the scientific literature on psycho-
social risk ignores fundamental methodological issues. Taking
this statement further, one can say that psychosocial risk factors
can be addressed only in studies designed for that purpose. Recall
bias, lack of adjustment for disease-specific factors or comorbidity,
use of unbiased data sources, exclusion of interviewer bias, and
other issues have been ignored by researchers working in this area.
Today, however, more studies in this area fully acknowledge the
need for such considerations in the search for possible psychoso-
cial risk factors for cancer.
WHAT IS ARISK FACTOR FOR CANCER?
Researchers on psychosocial risk factors for cancer should refer to
the guidelines for cancer causation published by the International
Agency for Research in Cancer (IARC). Since 1969, working
groups convened by IARC have assessed the degree of evidence
for the carcinogenicity to humans of some 800 biological, physi-
cal, chemical, and occupational factors and have ranked risk fac-
tors for cancer according to the degree of evidence for causality.
Psychological factors have not been reviewed in this context, but
a brief review of psychological factors associated with cancer was
included in another IARC publication on cancer prevention and
control in 1990.3 No conclusion was reached about the degree of
evidence, but it was stated that future epidemiological studies
should include standardized instruments and data on potential
confounders in order to be credible.
The evaluation of psychosocial factors in the causation of can-
cer must be addressed in the context of certain methodological
problems, which are summarized briefly below on the basis of the
preamble to the IARC Monographs. 3
First, the study population, disease, and exposure should have
been well defined by the authors. Cases of disease in the study
population should have been identified in a way that was indepen-
dent of the exposure of interestin this case, the mind factor. The
exposure should have been assessed in a way that was not related
to disease status.
Second, the authors should have taken into account in the
study design and analysis other variables that can influence the
risk for disease and that might have been related to the exposure
of interest. Potential confounding by such variables should have
been dealt with either in the design of the study, such as by match-
ing, or in the analysis, by statistical adjustment. In cohort studies,
comparisons with local rates of disease may or may not be more
appropriate than those with national rates. Internal comparisons
of frequency of disease among individuals at different levels of
exposure are also desirable in cohort studies, as they minimize the
potential for confounding related to the difference in risk factors
between an external reference group and the study population.
Third, the authors should have reported the basic data on which
the conclusions are founded, even if sophisticated statistical anal-
yses were employed. At the very least, they should have given the
numbers of exposed and unexposed cases and controls in a case
control study and the numbers of cases observed and expected in
a cohort study. Further tabulations by time since exposure began
and other temporal factors are also important. In a cohort study,
data on all cancer sites and all causes of death should have been
given, to reveal the possibility of reporting bias. In a casecontrol
study, the effects of investigated factors other than the exposure of
interest should have been reported.
Finally, the statistical methods used to obtain estimates of rela-
tive risk, absolute rates of cancer, confidence intervals, and sig-
nificance and to adjust for confounding should have been clearly
stated by the authors.
36 Section I behavioral and psychological factors in cancer risk
When an agent is discussed by the independent working
groups convened by IARC, evidence from studies in humans and
experimental animals is evaluated together, and the strength of
the mechanistic evidence is also characterized. The groups then
decide on the strength of the association between the exposure
under review and carcinogenicity. An agent is assigned to one of
five groups:3
Group1:The agent is carcinogenic to humans.
Group2A:The agent is probably carcinogenic to humans.
Group2B:The agent is possibly carcinogenic to humans.
Group 3: The agent is not classifiable as to its carcinogenicity
tohumans.
Group4:The agent is probably not carcinogenic to humans.
These considerations should be of interest to clinicians and
researchers working in the field of psychosocial risk factors for
cancer. They stimulate attention to the design and interpretation
of scientific studies and form part of the discussion of the current
state of the art in this intriguing area of research.
Research on Psychosocial Risk Factors for Cancer
The three psychosocial factors that have been most rigorously
studied in investigations of psychosocial cancer risks are major
life events or stress, depression or depressive mood, and person-
ality or personality traits. The commentary in this chapter does
not represent a systematic review; it covers only studies conducted
as prospective or retrospective cohort studies and casecontrol
studies in which the information on psychosocial variables was
collected independently of the outcome, thereby reducing the
possibility of selection and recall bias. The findings of some of
the best-designed studies published since 2000 are summarized
briefly below.
MAJOR LIFE EVENTS AND STRESS
Numerous studies have investigated the association between
major life events, stress in daily life, or work-related stress and
the risk for cancer. Breast cancer has been a focus in this research
tradition.
With regard to work-related stress, a large Finnish prospec-
tive cohort study of 10,519 women aged 18 years or more inves-
tigated the relation between stress in daily activities and breast
cancer.4 Daily stress was assessed twice, in 1975 and 1981, by a
self-administered questionnaire, and study subjects were divided
into three groups: no stress (23% of women), some stress (68%),
and severe stress (9%). The authors identified 205 incident cases
of breast cancer by linkage to the nationwide, population-based
cancer registry and observed that the hazard ratio for breast can-
cer in women with some stress was 1.11 (95% confidence inter-
val [CI], 0.781.57) when compared with women with no stress.
For women with severe stress, the hazard ratio for breast cancer
was 0.96 (95% CI, 0.531.73) when compared with those with no
stress. The analysis included detailed information on reproductive
factors, anthropometrics, and lifestyle. Neither shifting the cutoff
point for stress nor restricting the analysis to women who reported
the same level of stress at the two measurements altered the results.4
The same group investigated the same hypothesis in a cohort of
10,808 women sampled in the Finnish Twins Registry and obtained
information on exposure to life events by using a standardized life
event inventory.5 They examined the effect of accumulation of life
events, placing emphasis on events experienced five years before
completion of the questionnaire. They observed that the experi-
ence of divorce or the death of a husband was followed by a sig-
nificant twofold increase in the hazard ratio for breast cancer; the
death of a close relative or friend also significantly increased the
risk by almost 40%. The analysis included some information on
reproductive factors, anthropometrics, and lifestyle. It is notable
that the authors investigated the effect of cumulative exposure to
life events.5
In the Nurses Health Study of 69,886 women aged 4671 at
baseline in the United States, the women answered questions on
informal caregiving.6 The authors hypothesized that hours and
self-reported levels of stress from informal caregiving would be
associated with breast cancer incidence. Atotal of 1700 incident
cases of breast cancer were identified between 1992 and 2000, in
which period the women reported caregiving twice, in 1992 and
1996. The analysis included information on reproductive fac-
tors, family history of breast cancer, psychosocial factors such
as depressive symptoms, social network and self-reported level
of stress, anthropometrics, and lifestyle factors. The authors did
not find that stress due to caregiving increased the risk for breast
cancer.6
Two reports based on the Nurses Health Study in the United
States and the Danish Nurse Cohort study of job stress and risk
for breast cancer found no increase in the risk of women who
reported high levels of strain in their daily working lives.7,8 Both
studies were conducted as cohort studies, with morbidity from
breast cancer as the outcome and adjustment for a number of
factors of relevance for breast cancer risk. The Danish study also
investigated the association between stress and stage of disease at
diagnosis but did not find that stress affected the prognostic char-
acteristics of disease.
More recent studies that included carefully planned follow-up
in cohorts with detailed information on other potential risk fac-
tors also do not find that stress causes cancer. In a cohort of 84,334
members of the Womens Health Initiative in the United States, a
total of 2841 invasive breast cancer cases was observed from an
average of 7.6years of follow-up. One stressful life event was asso-
ciated with breast cancer; however, risk decreased with each addi-
tional stressful life event.9
In a cohort of 11,467 women in the United Kingdom, a total
of 313 cases of incident breast cancer was observed. The authors
report no association with these cases and the reporting of a sum-
mary of social adversities adjusted for well-known risk factors for
breast cancer.10
In summary, almost none of the large population-based stud-
ies in which information on exposure is collected indepen-
dently of scientific hypotheses found evidence that work-related
stress or major life events are associated with an increased risk
for cancer. Although a few well-designed studies have shown
an increased risk,11,5 the strong consistency among the presum-
ably unbiased studies indicates that explanations for the elevated
risk may include selection bias, residual confounding, or chance.
This conclusion comes close to the overall conclusion in several
reviews.12,13 However, the publication of a review in 2008, which
included some debatable criteria, illustrates how much belief and
methodological decisions in reviewing scientific literature also

influence the judgment of the association between stress and can-
cer risk and prognosis.14 This extensive review and meta-analysis
has been widely cited despite the inclusion of research that has
been discredited because the data may be flawed, a number of
methodological mistakes in the entire construction of the analyti-
cal model, lack of controls in a high number of the studies often
underpowered to detect the association, and the use of quite het-
erogeneous indicators of stress.15
DEPRESSION AND DEPRESSIVE MOOD
In a nationwide Danish cohort study of the cancer risk of patients
hospitalized for depression, all 89,491 adults who had been admit-
ted to a hospital with depression, as defined in the International
Classification of Diseases, Eighth Revision,16 between 1969 and
1993 were identified. Atotal of 9922 cases of cancer were diag-
nosed in the cohort, with 9434.6 expected, yielding a standard-
ized incidence ratio of 1.05 (95% CI, 1.031.07). The risk for cancer
increased during the first year after hospital admission, with brain
cancer in particular occurring more frequently than expected.
When the first year of follow-up was excluded, the increase was
attributable mainly to an increased risk for tobacco-related can-
cers, with standardized incidence ratios for non-tobacco-related
cancers of 1.00 (95% CI, 0.971.03) after 19years of follow-up and
0.99 (95% CI, 0.951.02) after 10 or more years of follow-up. These
findings provide no support for the hypothesis that depression
independently increases the risk for cancer, but they emphasize
the deleterious effect that depression can have on lifestyle.16
In a Dutch prospective follow-up study of 5191 women living in
Eindhoven and born in the Netherlands between 1941 and 1947,
all the participants answered a questionnaire about the presence
of depressive symptoms measured on the Edinburgh Depression
Scale.17 The outcome was morbidity from cancer recorded in the
regional cancer registry, which reported incident breast can-
cer cases up to five years after the questionnaire screening. The
analyses were adjusted for information on 15 demographic, medi-
cal, and lifestyle factors known to be associated with the risk for
breast cancer. Breast cancer was diagnosed in 58 women during
the follow-up period, yielding an odds ratio of 0.29 (95% CI, 0.09
0.92), which suggested that depressive symptoms may be protec-
tive against breast cancer.17
The same design was used in a study in Finland in which 10,892
women aged 4850years at the time of inclusion were followed
up for breast cancer 69years later.18 The questionnaire included
items on depression, personality traits, attitudes toward illness,
life events, and health history. The incident cancer cases were
obtained from the nationwide Finnish cancer registry, which has
almost complete population-based coverage. The multivariate
analysis controlled for socioeconomic factors, family history of
cancer, parity, and health behavior, and identified a nonsignificant
increased risk of 1.15 (95% CI, 1.01.28) for breast cancer among
women aged 5059 when compared with the general population.
There was no evidence that depression, anxiety, cynical distrust,
or coping increased the risk for cancer.18
A large prospective study was conducted of the association
between depressive symptoms as measured by the Mental Health
Index (MHI) and risks for colorectal cancer and colorectal adeno-
mas.19 Women (who were all part of the Nurses Health Study)
who scored between 0 and 52 on a 0100 scale were defined as
having significant depressive symptomatology. A total of 33 of
Chapter6 psychosocial factors 37
the 400 cases of colorectal cancer filled this definition, as did 45
of 680 cases of distal adenoma. The authors created other catego-
ries across the range of MHI scores and reported a nonsignifi-
cant elevated risk of 1.43 (95% CI, 0.972.11) for colorectal cancer
in women with the highest score on the index, with a stronger
association in overweight women. Depressive symptoms did not
increase the risk for adenomas.19
A large population-based record-linkage study in the Oxford
National Health Service region in the United Kingdom addressed
people who had been admitted to hospitals for depression or anxi-
ety.20 Areference cohort of 525,436 persons was constructed by
selecting records for admission for various other medical and sur-
gical conditions as controls. The outcome was identified as either
death from cancer or hospital care for any cancer. People who had
the cancer at the first recorded admission for the psychiatric dis-
order or a comparison condition were excluded in order to avoid
misclassification. The authors did not find an overall increase in
the risk for cancer in either the 27,818 persons with depression or
the 24,292 persons with anxiety. When the first year of follow-up
was excluded, the relative risk for lung cancer was significantly
increased in both cohorts (1.30; 95% CI, 1.141.48 in the depres-
sion cohort and 1.21; 1.031.36 in the anxiety cohort).20
A study from Taiwan using data from the National Health
Research Institute identified all 8419 newly diagnosed depression
patients in the period 20002002 and compared the risk for cancer
with all 67,352 (case/control ratio, 1/8) other cases claiming insur-
ance but with no diagnosis of depression.21 The authors report no
increased risk for cancer in this study adjusting for gender, age,
occupation, urbanization, and comorbidity.
Another study from Taiwan reported an increased risk for can-
cer in a cohort of 778 patients hospitalized for depression in the
time period 19982003, together with 3890 matched persons from
the background population who had undergone minor abdominal
surgery.22 The study found 61 cases of cancer among the severely
depressed cohort members, finding significantly increased hazard
ratios for gastrointestinal cancers, genitourinary, and the group of
other cancers. The small numbers and relatively broad catego-
ries make inference difficult.
In summary, in most of the studies in which total cancer
risk was assessed, no statistically significant increase related to
depression was seen, or increases were seen in only some strata.
Increased risks were often observed for smoking-associated can-
cers such as lung cancer. Thus, it is the lifestyle of depressed people
that is probably the most straightforward explanation for the posi-
tive findings in some studies, although a depressive component
cannot be excluded.
PERSONALITY TRAITS
In a large Finnish study based on the above-mentioned Twins
Cohort, 12,032 women answered questions about life satisfac-
tion and neuroticism in 1975 and 1981. During the 21 years of
follow-up, 238 cases of breast cancer were identified in the Finnish
Cancer Registry. The authors reported no association between the
measures of life satisfaction, neuroticism, and the risk for breast
cancer. Subsequent nested casecohort analyses and analyses that
included changes in the levels of neuroticism and life satisfac-
tion at the two times led the authors to conclude that there was
no evidence that breast cancer is more likely to occur in unhappy,
dissatisfied, anxious women. 23 These findings were confirmed
38 Section I behavioral and psychological factors in cancer risk
in additional analyses that included measures of extroversion,
type A behavior, and hostility.24 This finding was confirmed in a
large study of Swedish and Finnish twin cohorts including close
to 60,000 persons. The authors observed a risk close to unity for
any cancer (HR, 0.99; 95% CI, 0.981.01 for extraversion, and HR,
1.00; 95% CI, .991.02 for neuroticism).25
A smaller prospective cohort study in Germany of 5114 women
and men aged 4065 measured mortality from and incidence
of cancer.26 A number of personality scales were included in a
questionnaire, and participants were followed up for a median of
8.5years. During this time, 240 persons developed a cancer or died
from the disease. The authors reported no association between the
personality measures and cancer occurrence after adjustment for
lifestyle, comorbidity, and family history of cancer.
Ikigai is a Japanese concept believed to be an essential factor for
maintaining health. Japanese dictionaries define ikigai as some-
thing to live for, the joy and goal of living, or the happiness and
benefit of being alive. In a cohort of 31,992 Japanese women aged
4079years, a total of 149 cases of breast cancer were identified
from either mortality records or diagnostic information.27 The
mean follow-up was 7.5years. Women who expressed ikigai were
at a significantly lower risk for breast cancer (relative risk, 0.66;
95% CI, 0.470.94), as were women who expressed decisiveness
(0.56; 0.360.94). Two other factors investigated, ease of anger
arousal and self-perceived stress of daily life, were not associated
with breast cancer risk.
In a cohort of 9705 women in Nijmegen, the Netherlands, the
authors investigated the association between 10 personality traits
as measured with the SAQ-N, a questionnaire developed by this
group.28 The participation rate was 34%, which somewhat limits
the conclusions. The medical risk factors included in the analysis
were family history of breast cancer, parity, age at birth of first
child, estrogen use, age at menarche, and body mass index. The
authors reported no association between any of the personality
traits and the risk for breast cancer.
In summary, these studies do not point to an association
between personality traits and the risk for cancer, in particular
breast cancer. This statement is based on well-designed prospec-
tive studies that covered fairly large populations, clear definition
of the exposure, an acceptable length of follow-up, and adjust-
ment for some factors that might be confounders. The outcome
was based on either information on morbidity or close follow-up of
mortality to exclude misclassification. Furthermore, the hypoth-
esis was established independently of the cohort formation, and
none of the data sources was biased by interviewers or informa-
tion to cohort members. The use of administrative sources almost
completely excludes selection bias.
MECHANISMS
A number of investigations have been conducted of the possible
pathways between mind factors and the risk for cancer. These now
form a complete research area, named psychoneuroimmunology,
which is an important component, with human studies, of a new
field that bridges biology, epidemiology, and cancer risk research.
It has been hypothesized that psychosocial factors acts like
stress through the hypothalamic-pituitary-adrenal axis in a com-
plex feedback system that adversely affects overall immune func-
tion. It has been further hypothesized that the immune system
is involved in eliminating mutated cells, and it is possible that
reduced immunity could lead to more rapid development of can-
cer. Furthermore, psychosocial factors may also act as a promoter
of faulty DNA repair and an inhibitor of apoptosis and DNA
repair. These systems and changes in function are suggested to
be precursors of certain types of cancer, such as hormonal and
hematological-lymphatic cancers.
Despite the plausibility of these mechanisms, little or no epide-
miological evidence has arisen during the past 50years of research
on psychosocial risk factors in cancer. The association between
diseases characterized by immune deficiency and breast cancer
is weak, although several studies have demonstrated a reverse
causation.29,30 In a large Scandinavian casecontrol study, how-
ever, a personal or family history of certain autoimmune condi-
tions was strongly associated with an increased risk for Hodgkins
lymphoma. The association between both personal and family
histories of sarcoidosis and a statistically significantly increased
risk for Hodgkins lymphoma suggests a shared susceptibility for
these conditions.31 This points to the possibility that mechanisms
linking psychosocial factors with cancer differ, depending on the
cancer site.
Alternatively, the mechanism may be driven more by changes
in behavior. It is well known that people under severe stress, in
depression, or expressing certain personality traits differ from
others with regard to health behavior. This is true for smoking,
alcohol consumption, diet, and physical activity. Some studies
have confirmed this pattern, finding higher risks for cancers asso-
ciated with these behaviors. 32,33,16 Thus, our understanding of
psychosocial risk factors might have a larger public health impact
if we focused on changes in the lifestyles of people exposed to
stress or major life events who exhibit certain personality traits
and experience depression or depressive mood.
CONCLUSION
During the past 10years, more than 15 reviews of psychosocial
risk factors for cancer have been published. The conclusions
reached go in two directions:one group of reviewers found small
or putative associations, while the other group found no or only
a small etiological fraction reserved for psychosocial risk factors
because of methodological limitations in the studies reviewed.
Any conclusion must take into account the quality of the stud-
ies, whether pro or con. From a methodological viewpoint, it is
incorrect to use a casecontrol design, as such studies have seri-
ous problems that are exacerbated in this area of research. This
design can be used only if information on exposure is obtained
from administrative sources, in which information is collected
for purposes that have nothing to do with the hypothesis of the
study, as illustrated by Ewertz (1986). 34 She conducted a nation-
wide casecontrol study of 1792 cases of breast cancer diagnosed
in Denmark in 19831984 and identified from the cancer register,
with 1939 population-based controls, and found that divorce and
widowhood did not increase the age-adjusted risk for breast can-
cer. Among the requirements for future research, therefore, are
prospective data, clearer definitions of exposure, and repeated
measures during follow-up; we also need longer follow-up to iden-
tify more cases and to investigate psychosocial factors with the
same rigorous methods used in other areas of research.

We must include information on other well-defined risk fac-
tors for the disease under study in order to find out how they
confound or interact with each other in relation to the associa-
tion investigated. This is being recognized in more and more
studies. The socioeconomic aspects of the exposure under
study, comorbidity, and health behavior are new aspects of
our understanding of the association between mind and can-
cer risk. We must consider carefully whether health behavior is
an intermediate rather than a confounding factor, as this will
have profound implications for our understanding of the pos-
sible association between psychological factors and the risk for
cancer. It has also been noted that this field of research would
be more comprehensive if not just one but several psychosocial
factors were included.13
In conclusion, psychosocial factors such as stress, depression,
and personality traits do not appear to play a major role in can-
cer causation. All the studies published so far have limitations,
making it difficult to reach a definitive decision about causal-
ity. However, the majority of well-designed studies taking into
account methodological issues of relevance for the field do not
confirm that mind causes cancer.
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C. Extroversion and neuroticism and the associated risk of cancer:a
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 SECTION II

Screening for Cancer

in Normal and
At-Risk Populations

7 Colorectal Cancer Screening 43 9 Breast Cancer Screening 58

Sally W.Vernon, Caitlin C.Murphy,
and Amy McQueen
8 Cervical Cancer Screening
Suzanne M.Miller, Siu-kuen Azor Hui,
John Scarpato, and MinsunLee
Rory C.Weier, Sarah A.Reisinger,
and Electra D.Paskett
49 10 Prostate Cancer Screening 64
Ronald E.Myers, Amy Leader, Melissa DiCarlo,
Charnita Zeigler-Johnson, and Edouard Trabulsi
 CHAPTER7
Colorectal Cancer Screening
Sally W.Vernon, Caitlin C.Murphy,and
Amy McQueen
INTRODUCTION
The overall goal of colorectal cancer (CRC) screening is to reduce
morbidity and mortality from CRC. CRC is the second leading
cause of cancer deaths in the United States, with estimates of
136,830 new cases and 50,310 deaths in 2014.1 From 2006 to 2010,
the average annual incidence rates of CRC were 51.7 and 39.1 per
100,000 among men and women, respectively.1 During the years
20012010, incidence rates declined by 3.9% per year among
adults 50years of age and older, and the steepest declines occurred
among adults 65years of age and over. During the same period,
average annual mortality rates were 19.6 per 100,000 for men and
13.9 per 100,000 for women. The mortality rate declined 3.0% in
both women and men; and the overall 5-year relative survival
rates increased from 49.8% in 19751977 to 66.1% in years 2003
2009.1 Regular screening with the fecal occult blood test (FOBT)
or sigmoidoscopy facilitates earlier detection of CRC and lowers
mortality.2 Screening colonoscopy may decrease CRC incidence
through early detection and removal of precancerous polyps.
Other than cervical cancer, CRC is the only cancer for which inci-
dence and mortality can be reduced through population-based
screening.
Organizations such as the American Cancer Society agree that,
for those at average risk, CRC screening should begin at age 50.1
Current guidelines distinguish between tests that detect cancer
early (e.g., annual guaiac-based FOBT, annual fecal immuno-
chemical test, or stool DNA testing) and tests that can prevent
cancer through detection and removal of polyps (e.g., colonos-
copy every 10 years or sigmoidoscopy, double-contrast barium
enema, or computed tomographic colonography/virtual colonos-
copy every 5years).2 Behavioral scientists interested in conduct-
ing research on cancer screening need to be aware of changes in
the guidelines so that their research will be based on sound scien-
tific evidence that links a target screening behavior to a potential
reduction in incidence or mortality.
Two national sources of prevalence data on CRC test use in the
United States are the National Health Interview Survey (NHIS)
and the Behavioral Risk Factor Surveillance System (BRFSS).
Differences in the methods of data collection have resulted in
slightly different estimates of CRC screening prevalence; however,
both sources show a gradual increase in overall test use. NHIS
data show an increase from 42.5% in 2000 to 58.6% in 2010 for
FOBT in the past year or sigmoidoscopy or colonoscopy in the
past 10years.3 Most of the increase in screening has been due to
increased use of colonoscopy (Figure 7.1). Despite this increase,
the prevalence of CRC screening in the United States is lower than
breast or cervical cancer screening. Moreover, there are dispari-
ties in screening prevalence by race/ethnicity. NHIS data from
2010 showed that Hispanics and Asians had the lowest screening
rates (34.9% and 47.4%, respectively), followed by non-Hispanic
blacks (48.6%) compared with non-Hispanic whites (55%).4
Implementation of screening guidelines is essential if we are to
continue to have an impact on CRC morbidity and mortality.
The purpose of this chapter is to review behavioral research on
CRC screening in the United States and to identify directions for
future research based on this evidence.
CRC SCREENING CORRELATES
ANDPREDICTORS
Studies of factors associated with CRC screening are used to
inform the selection of target populations for intervention and
the content of interventions. For example, demographic variables
are useful for identifying population subgroups to target inter-
ventions. They are less amenable to change and are therefore not
as useful for informing the content of interventions designed to
Percent
60
50
40
30
20
10
0
2000 2003 2005 2010
Any recent CRC test Col past 10 years SIG past 5 years FOBT past year
Figure7.1 Recent colorectal cancer test usage among respondents age 50 and
older:National Health Interview Survey 2000, 2003, 2005 and 2010*.
*sigmoidoscopy data for 2010 unavailable.
44 Section II screening for cancer in normal and at-risk populations
motivate and enable screening test use. The major categories of
factors that have been studied in relation to CRC screening behav-
iors include sociodemographics, healthcare access, health status,
health behavior, and cognitive, psychosocial, and environmental
factors. Because CRC screening is unique in that multiple test
options are available, the role of test preferences and informed
decision-making in CRC screening test use has also been exam-
ined. Although numerous studies have identified factors associ-
ated with CRC screening, there have been only a few attempts
to review this literature. 5,6 Most of this literature is based on
cross-sectional study designs that can only establish associations.
Too few studies have used prospective designs or tested hypoth-
eses about causal pathways of factors influencing CRC screening
by examining mediators and moderators.
Sociodemographics, Healthcare Access, Health Status,
and Health Behavior Factors
Studies of sociodemographics, access to healthcare, health status,
and health behavior have often used data from national surveys.
Although CRC screening rates have increased over time, rates
have remained lower among non-whites, those with less educa-
tion, those living in rural versus urban areas, and those without a
regular source of healthcare or medical insurance.3 CRC screen-
ing is the only type of cancer screening that is recommended for
both males and females, but few studies have examined whether
correlates differ by gender.7 Such differences may inform the use
of gender-specific messages or intervention strategies to increase
CRC screening test use.
The most common reasons for not having a CRC test include lack
of awareness or no physician recommendation.7,8 Cross-sectional
studies report that a physicians recommendation for CRC screen-
ing is important for patient adherence, but prospective studies
suggest that a recommendation may not be sufficient for increas-
ing CRC screening uptake to desired levels.9 Engaging in other
preventive health behaviors, such as other cancer screening tests,
has been positively associated with CRC screening. Health status
has been measured in multiple ways (e.g., self-reported health,
comorbidity, functional status), which may explain why the pat-
terns of association with cancer screening behaviors have varied.10
Compared with FOBT, the likelihood of completing an endoscopic
test is greater among people with a family history of CRC, access
to regular healthcare and health insurance, fewer concerns about
cost, and higher perceived CRC risk.8
Cognitive and Psychosocial Factors
Health behavior theories are used to identify cognitive and psy-
chosocial variables that may influence behavior. In cross-sectional
studies, consistent correlates of CRC screening include preventive
health orientation, physician recommendation, knowledge of can-
cer risk factors, perceived benefits (pros) and barriers (cons) to
screening, and self-efficacy.6 Most, but not all, studies of perceived
risk and severity report a positive association with CRC screening.
Fear and worry about CRC or the screening test itself have small, if
any, direct effects on CRC screening behavior, possibly due to low
levels of worry even among high-risk populations. Specifying the
source of worry has shown that worries about cancer are positively
associated with screening, whereas worries about the test may act
as a barrier to screening. Hypotheses of a curvilinear effect of
worry or anxiety have not been supported.11
Relatively few psychosocial constructs have been examined in
prospective studies, and fewer have been examined across stud-
ies.6 Even when the same constructs were used, they were often
defined and operationalized differently, and few measures of psy-
chosocial constructs have been validated. Nevertheless, cumula-
tive evidence based on prospective study designs and multivariable
analyses suggest consistent independent associations between
CRC screening perceived benefits and barriers, self-efficacy, and
intention. Preferences for specific CRC screening tests vary by
screening goals, test characteristics, and patient-level variables. In
one prospective study, only about half of the sample received the
CRC screening test they preferred.12
Future research should confirm the predictive utility of
CRC screening correlates and explore their interrelations in
theory-based causal models. Some individual-level variables that
warrant examination as predictors in future research include
affect, social influence, trait-level personality characteristics such
as dispositional optimism or conscientiousness, patient and pro-
vider CRC screening test preferences (and their potential mis-
match), low perceived need or value for screening, and avoidant or
self-exemption tendencies.
Conceptual Models
Basic causal models are formed when intermediate behavioral
outcomes are examined as mediators. Variables that have been
examined as intermediate outcomes of intervention efforts to
increase CRC screening behavior include intention, aware-
ness, knowledge, risk perceptions, and physician-patient dis-
cussion about CRC screening. Intention is a frequently studied
intermediate outcome because it is a strong predictor of behav-
ior. Different intervention strategies may be needed to increase
CRC screening, depending on individuals behavioral inten-
tions. Understanding how to effectively tailor intervention mes-
sages or strategies is informed by process evaluation; however,
few studies have reported thorough evaluations of participants
appraisal of CRC screening informational materials or interven-
tion components. Similarly, not all CRC screening discussions
lead to CRC screening adherence; therefore, we need to better
understand which components of these discussions or which
informed decision-making criteria are important for increasing
CRC screening uptake.
Very few studies have tested hypothesized causal pathways of
multiple predictors of CRC screening. Health behavior models
that posit only direct effects between predictors and intention and
behavior may underestimate the total effects of CRC screening
determinants through other mediating and moderating pathways.
One study used longitudinal data to examine competing concep-
tual models of the role of perceived susceptibility on CRC screen-
ing intention and behavior.13 That study found that the influence
of perceived susceptibility on screening behavior was indepen-
dent of perceived barriers, moderated changes in perceived ben-
efits and self-efficacy, and was mediated by social influence. Other
studies that have examined mediators or moderators generally
have focused on evaluating intervention effects rather than the
testing of conceptual models explaining health behaviors. Future
studies need to examine different causal models of mediators and
moderators to provide new ways of thinking about the underly-
ing mechanisms relating cognitions and behaviors in order to
improve the effectiveness of interventions.

Multilevel models can examine the independent and interac-
tive effects of individual- and environmental-level variables on
CRC screening. Examining environmental-level variables could
potentially identify screening disparities across health systems or
geographic areas that could be targeted for interventions or CRC
screening programs. An emerging literature has identified mul-
tiple environmental-level factors associated with CRC screening,
including, among others, several indicators of area socioeconomic
status, availability, density, capacity, or features of local healthcare
resources, and managed care penetration.14 Future research is
needed to further elucidate the mechanisms of influence between
environment-level factors and CRC screening.
INTERVENTIONS TO PROMOTE
CRCSCREENING
Efforts to promote the uptake of CRC screening began in the
1980s and accelerated in 1997 upon publication of consensus
screening guidelines. An increasing number of reviews have
evaluated the effectiveness of interventions on CRC screening
test use. Arguably, the most widely used recommendations for
selecting interventions to promote CRC screening are those of the
Community Preventive Services Task Force. The Task Force rec-
ommendations were updated in 2012 based on an expanded lit-
erature review of studies published through October 2008.15 The
review included nine interventions that were classified either as
client-oriented intervention (i.e., increasing community demand
and community access) or provider-oriented intervention. The
cumulative evidence supported the following interventions for
use in increasing CRC screening with FOBT: client reminders,
small media, one-on-one education, reducing structural barriers,
provider assessment and feedback, and provider reminder and
recall systems. There was insufficient evidence to determine the
effectiveness of group education, client incentives, mass media,
reducing out-of-pocket costs, and provider incentives in increas-
ing CRC screening with any type of test. Although a few studies
reported results for interventions to increase the use of colonos-
copy or sigmoidoscopy, they were too few or were of poor quality
and thus cannot be used as a basis for recommendation.
Recent reviews of the CRC screening intervention literature
have focused on minority populations, healthcare systems, and
patient navigation. We highlight briefly some of the key findings
from these reviews and selected studies.
Interventions in Minority Populations
A number of recent reviews have focused on interventions con-
ducted in specific racial/ethnic or multi-ethnic groups in the
United States.1618 Gonzalez et al.16 reviewed five intervention
studies of Hispanics that were conducted in primary care set-
tings and found that culturally targeted interventions were effec-
tive at increasing both general awareness of CRC screening and
completion of FOBT Although the interventions were delivered
by various methods, for example, video, brochures, FOBT kits
with instructions for use, telephone counseling, and home visits,
most of the studies used promotoras to deliver the intervention.
Although FOBT return rates were increased in all studies, par-
ticipants intention to be screened in the future did not increase,
suggesting that strategies are needed to instill a commitment to
regular screening. Powe etal.18 reviewed intervention studies in
Chapter7 colorectal cancer screening 45
which at least 50% of the sample was African American. Of the
12 studies identified, 10 showed increases in some type of CRC
screening, including seven that included or targeted endoscopy,
that is, colonoscopy or sigmoidoscopy. The authors concluded that
the most effective interventions were those that were tailored to
address barriers identified by participants, that used personal-
ized materials to educate or remind participants, and that used
multicomponent strategies. Interventions to educate providers
increased physician knowledge and recommendations for CRC
screening, but the effect on patients screening rates was incon-
sistent. While the studies reviewed by Powe etal. all included a
majority of African Americans, the authors did not consistently
examine the effects of the intervention by race. Cancer fatalism
and distrust of the healthcare system, which may be important
cognitive or motivational barriers to minority groups participa-
tion in cancer screening, were not addressed in any of the studies.
Naylor et al.17 reviewed the literature to identify interven-
tions conducted within healthcare systems that had the poten-
tial to reduce racial/ethnic disparities in CRC across the cancer
control continuum. For CRC screening, they identified 33 stud-
ies that included at least 50% racial/ethnic minority patients or
that had sufficient statistical power to conduct subgroup analyses
by race/ethnicity. Similar to the Task Forces classifications, the
authors classified intervention studies into three predominant
types: patient-level interventions, patient navigation interven-
tions, and provider/system-level interventions. Patient education
and navigation interventions were the most successful, with more
intensive interventions achieving higher screening rates. Similar
to the conclusion reached by Powe etal.,18 studies that included
tailored patient education materials and/or involved personal
contact combined with patient navigation services to address
logistic barriers modestly increased CRC screening. However,
both Naylor etal. and Powe etal. emphasize that very few of the
studies compare the effectiveness of interventions across racial/
ethnic groups. Without such comparisons, we cannot determine
whether these interventions would reduce the disparity in CRC
outcomes. In a secondary analysis of data from a randomized
controlled trial to promote CRC screening, Siddiqui etal.19 found
that whites were more likely than African Americans to respond
to several interventions promoting CRC screening when all inter-
vention groups were combined (53% vs. 43%); however, the differ-
ence appeared to be due to the greater responsiveness of whites to
mailed intervention materials. The differences in CRC screening
rates between whites and African Americans were attenuated in
the study group that received a personalized reminder phone call.
Interventions in Healthcare Systems
Although Naylor et al.17 found that provider or clinic system
interventions also were effective at increasing CRC screening,
they emphasized that most of these studies were conducted in
small clinics under controlled circumstances, and that the next
step is to focus on implementing this type of approach in large
healthcare systems, where there can be long-term follow-up to
determine whether systems approaches are effective over the long
term and are sustainable. A recent study conducted by Green
etal.20 evaluated a stepped intervention approach in a large man-
aged care network of primary care clinics. The interventions
built on an existing system in which usual care involved promo-
tion of preventive services, including CRC screening, through
46 Section II screening for cancer in normal and at-risk populations
an annual system-delivered, patient-tailored birthday letter that
included a list of needed screening tests and other procedures.
Usual care was compared with interventions of increasing inten-
sity, including (1)usual care plus an automatically generated letter
and informational pamphlet indicating that patients were due for
CRC screening (automated group); (2)usual care plus automated
intervention plus telephone assistance from a medical assistant
(assisted group); or (3)usual care plus automated intervention plus
assisted intervention plus navigation from a registered nurse who
assessed the patients CRC and procedural risks, provided motiva-
tional counseling to help patients define their intent, select a test,
and develop an action plan, and assisted with referrals, appoint-
ments, test preparation, and tracked test completion. There was a
stepped increase in CRC screening as the intensity of the inter-
ventions increased:26%, 51%, 58%, and 65% for usual care, auto-
mated, assisted, and navigation groups, respectively. This study is
tracking participants over time to determine whether the effects
of the intervention are long-lasting.
Interventions Using Patient Navigation
Patient navigation has emerged as an intervention strategy to
promote CRC screening in healthcare and community settings
by addressing patient-reported barriers to screening (e.g., trans-
portation, scheduling). Originally developed to reduce dispari-
ties related to late-stage diagnoses, patient navigation has more
recently been associated with improvements across the cancer
continuum. 21 Several CRC screening interventions have used
aspects of patient navigation to increase the uptake of colonos-
copy or FOBT. In Myers et al.,22 nurse navigators called inter-
vention group participants to discuss any concerns or barriers to
CRC screening and to encourage completion of the participants
preferred screening tests. Screening adherence increased by 26%
among patients randomized to tailored navigation compared
to those who received a standard mailing. In another study, 23
a series of telephone calls from a language-concordant patient
navigator increased CRC screening by 13% relative to usual care.
Patient navigation has also been used to encourage CRC screen-
ing in racial/ethnic minorities. Two studies reported significant
increases in colonoscopy uptake among African Americans (76%
CRC screening completion)24 and Hispanics (79% CRC screening
completion standard navigation, 81% CRC screening completion
culturally tailored navigation)25 randomized to patient navigation
led by both peer and nurse navigators.
Although patient navigation has been associated with improve-
ments in CRC screening, navigation is conceptualized and
operationalized differently across intervention studies. There is
no consensus on a standard navigation definition, and there is
substantial variation in intervention components.21 For studies
of CRC screening, navigation interventions generally consist of
patient navigation plus additional components, which range in
intensity from reminder calls to small group educational sessions
to individual behavioral counseling. Intervention dose, frequency
of intervention contact, and intervention duration vary across
studies. Most interventions are delivered primarily via telephone
or a combination of telephone and mail.21 In addition, there is
little information available about the use of behavioral theory in
navigation interventions, even among well-designed programs
that present the strongest evidence for efficacy in improving
CRC screening. Navigation likely involves increasing behavioral
capacity and self-efficacy by addressing patient and system bar-
riers to accessing screening. Of the few studies that explicitly
state using theory to inform intervention development, facilita-
tion, cues to action, and tailored messaging are the most common
behavior change methods. Patient navigation interventions can be
strengthened by a more systematic use of behavioral theory that
guides their development and implementation.
TIMELY AND SYSTEMATIC FOLLOW-UP
OFABNORMAL SCREENING TESTS
To achieve maximum benefits from cancer screening, timely
follow-up of abnormal or inconclusive test results is needed
because delays in follow-up may contribute to advanced can-
cers. Much of the descriptive and intervention research to date
concerning timely follow-up of abnormal screening test results
focuses on patient characteristics; however, the identification,
reporting, and resolution of an abnormal finding are also depen-
dent on the healthcare system and providers. In order to achieve
timely follow-up, attending to a patients knowledge, fear, and
practical barriers (e.g., financial, transportation, child care) are
important, along with implementing standard tracking and
reporting procedures in clinical practice.26 For example, admin-
istrative databases and algorithms that identify the appropriate
follow-up needs of individual patients, based on test results, could
be linked to communication interventions of increasing intensity,
starting with tailored mailed letters or automated phone calls
and progressing to personal phone calls and to navigation, as was
done in one study.20 More intensive outreach may be needed to
reduce disparities in follow-up among underserved patients. More
research is also needed to identify the appropriate definitions and
intervals for timely follow-up, as well as the recommended
next steps in diagnostic testing and treatment, while taking into
account patient-centered preferences and values. Such research
may support policy changes requiring more consistent reporting
and consequences for not meeting guidelines for timely follow-up
of abnormal results.
OVERUSE OF SCREENING
Although the adoption of CRC screening has been associated with
reduced CRC incidence and mortality, less attention has been paid
to the possible overuse of screening. Overuse has been identified as
a potential risk for over-treatment of benign disease (e.g., prostate
and mammography screening). Similar concerns have been raised
about CRC screening. Limited evidence suggests that, among
Medicare patients with a negative screening colonoscopy, 46.2%
underwent a repeat colonoscopy in fewer than seven years. 27
Similarly, a mail survey of gastroenterologists and surgeons per-
forming colonoscopy found that 24% of gastroenterologists and
54% of surgeons recommended repeat colonoscopy at intervals
not concordant with guidelines.28 The overuse of screening colo-
noscopy is particularly concerning because it can have adverse
effects (e.g., hospitalization), can increase complications without
additional benefit, and can increase costs. Decreasing overuse of
screening colonoscopy may free up resources to increase appropri-
ate colonoscopy in underscreened populations. In a different study
of FOBT use, more than 20% of FOBTs met overuse criteria (i.e.,
conducted less than 10 months after prior FOBT) in the Veterans

Administration healthcare system.29 FOBT overuse increases the
chance of testing false positive and may lead to unnecessary diag-
nostic colonoscopy. More research is needed to further describe
the prevalence and determinants of overuse of CRC screening.
FUTURE DIRECTIONS
Recent data show that substantial progress has been made in
decreasing incidence and mortality from CRC. This progress is
attributable, in part, to increased use of CRC screening. However,
the approximately 60% point prevalence of screening in the
United States indicates that there is still room for improvement.
Moreover, there are important disparities in screening prevalence
by race/ethnicity, insurance status, and lack of a usual source of
care. These disparities in screening contribute to disparities in
incidence, survival, and mortality. An important development
that may positively affect the use of preventive health services is
the passage in the United States of the 2010 Patient Protection
and Affordable Care Act, which is intended to increase access to
care for those who lack health insurance coverage by eliminat-
ing cost-sharing for preventive clinical services including CRC
screening.
In the past few years, there have been several systematic reviews
that focus specifically on interventions in racial/ethnic groups in
the United States.1618 Although no definitive intervention strat-
egies have emerged, there was general agreement that interven-
tions that included personalized components, such as telephone
contact, and that were culturally tailored to the target audience
were more effective than generic interventions. Even as we direct
attention to reducing disparities in screening, we need to attend
to disparities in other aspects of cancer care. For example, in their
review, Naylor etal.17 found no studies that evaluated interven-
tions to reduce disparities in follow-up of abnormal test results,
treatment for CRC, survivorship, or end-of life care. Until dispari-
ties in other aspects of cancer care are addressed, racial/ethnic
disparities will remain.
One area that is gaining increasing attention is surveillance
screening among CRC survivors, where deviations from sur-
veillance recommendations include both under- and overuse of
screening. A recent review30 suggests that survivors adherence
to colonoscopy recommendations ranges from 18% to 61%, while
overuse of colonoscopy ranges from 24% to 76%. Few studies have
examined modifiable determinants of the timely receipt of rec-
ommended surveillance, which may inform interventions that
promote appropriate use of screening in CRC survivors. Data
from a study examining constructs from the Health Belief Model
found that some of the constructs associated with CRC screen-
ing in asymptomatic populations were not associated with survi-
vors intentions to have colonoscopy, including perceived benefits
and barriers, self-efficacy, and cue to action. These findings likely
reflect differences in personal experience; for example, self-efficacy
may have increased as survivors have previously negotiated the
healthcare system.
Several points that we raised in an earlier chapter on this topic31
still remain to be addressed. There still has been relatively little
research on repeat or regular CRC screening. Arecent study in
community clinics found that nurse support in the form of edu-
cation and telephone contact to facilitate the process increased
repeat FOBT screening to 59% compared with simply making a
Chapter7 colorectal cancer screening 47
screening recommendation and providing an FOBT kit (38%) or
a brief educational intervention with a literacy-appropriate pam-
phlet and simplified FOBT instructions (33%). 32 On-schedule
screening is particularly important for FOBT because of the
relatively frequent interval over which it needs to be performed
and because its effectiveness may be reduced when patients do
not adhere to a regular schedule, usually every one or two years.
Routine screening is most likely to be accomplished in healthcare
settings that have systems in place that can monitor patients sta-
tus and can generate automatic reminders, as is the case, for exam-
ple, in some managed care organizations. 20 As more systems and
practitioners adopt colonoscopy as the preferred screening option,
adherence to repeat screening may be less of a problem; however,
it is important that guidelines be clear and that providers follow
these guidelines to avoid the consequences of over-screening,
which can include unnecessary use of resources and adverse com-
plications for patients.
There are still relatively few studies that go beyond examin-
ing cross-sectional correlates of past screening behavior and
attempt to understand predictors or determinants of CRC
screening behaviors, including initial, recent, or repeat screen-
ing. Particularly lacking are studies of mediators and moderators
of intervention effects; such studies would give us insights into
why interventions do or do not work. One potential factor that is
beginning to be included in studies is patient test preference. We
still know relatively little about the importance of preference in
relation to other factors, such as access and navigation, that may
be more important to test completion. Inadomi etal.33 random-
ized patients to recommendation for screening by FOBT, colo-
noscopy, or their choice of the two. Participants randomized to
colonoscopy were less likely to complete it (38%) compared with
those randomized to FOBT (67%) or a choice (69%). Of the latter
group, 31% completed colonoscopy, suggesting that offering only
colonoscopy would decrease screening participation. In a second-
ary analysis of data from a randomized intervention trial to pro-
mote CRC screening, preference was associated with the type of
test completed, but access in the form of mailed FOBT kits also
was associated with completion regardless of stated preference.22
Unlike the ongoing controversy of prostate-specific antigen
testing and the more recent controversy over mammography
screening, where decision-making revolves around whether or
not to have a test or procedure and, in the case of mammography,
how often, there is consensus about the value and importance of
CRC screening.
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 CHAPTER8
Cervical Cancer Screening
Suzanne M. Miller, Siu-kuen Azor Hui,
John Scarpato, and Minsun Lee
Cervical cancer is the third most commonly diagnosed cancer
and the fourth leading cause of cancer deaths worldwide, account-
ing for 9% of the total new cancer cases and 8% of the total cancer
deaths among females in 2008.1 Yet incidence and mortality rates
in developing countries are, respectively, approximately twice and
three times higher than those in developed countries.2 Cervical
cytologic screening using the Papanicolaou (Pap) test allows for
the detection of precancerous lesions and has resulted in the sub-
stantial reduction in cervical cancer incidence and mortality in
the United States. In 2013, it is estimated that 12,340 women will
be diagnosed with, and 4,030 women will die of, cervical cancer
in the United States.3 The human papillomavirus (HPV), the most
common sexually transmitted disease, is etiologically linked to
virtually all cases of cervical cancer. Thus, testing to detect onco-
genic HPV strains in cervical tissue, along with prophylactic
vaccination, have the potential to further reduce cervical cancer
incidence and mortality. Risk factors for cervical cancer include
young age at first intercourse, multiple sexual partners, multiple
full-term pregnancies, long-term oral contraceptive use, young
age at first birth, as well as a history of smoking.3
Despite the overall decline of cervical cancer incidence and
death rates in the developed world, marked disparities in these
rates still persist. In the United States, Hispanic and African
American women bear a disproportionate burden of the disease.
In 20042008, Hispanics had the highest incidence rates, 1.5 times
that of non-Hispanics, and African Americans the second high-
est, 1.3 times that of non-Hispanic whites. African Americans had
the highest mortality rates, more than twice that of whites, and
Hispanics the second highest, 1.5 times that of non-Hispanics.
Contributing to these disparities are lower rates of screening
among Hispanics, lower adherence to medical follow-up rec-
ommendations after an abnormal screening result among both
Hispanics and African Americans, and poorer quality medical
treatment among African Americans.
The goal of cervical cancer screening is to target asymptomatic
women to prevent and detect precancerous abnormal cervical
tissue and lesions before they progress to cancer. Screening also
serves to detect cervical cancer, which is generally asymptomatic
in its early stages. Psychosocial assessment addresses the factors
that facilitate or undermine patient adherence to recommended
prevention, screening, and follow-up management regimens. This
chapter first provides an overview of cervical cancer screening and
follow-up of abnormal screening results, as well as information
about the Pap test, HPV testing, and HPV vaccination. We then
review psychosocial research on barriers to adherence to screen-
ing and follow-up guidelines, and psychosocial interventions
developed to overcome these barriers. Finally, we review psycho-
social research and interventions on HPV testing and vaccination.
OVERVIEW OF CERVICAL
CANCERSCREENING
Use of cervical cytology alone, and concurrently with HPV test-
ing (cotesting), are the two screening methods recommended
for average-risk women by the major professional organizations
in the United States (i.e., US Preventive Services Task Force,
American Cancer Society, American Society for Colposcopy and
Cervical Pathology, American Society for Clinical Pathology,
and American College of Obstetricians and Gynecologists; see
Table 8.1).4,5 Recommendations for follow-up management of
abnormal screening test results depend on the severity of the
abnormality, the womans age and prior screening history, and the
results of cotesting and follow-up HPV test results (see Table 8.2).
Recommended follow-up procedures for abnormal results include
colposcopy (magnified examination of the cervix and vagina, and
in some instances the vulva, to identify abnormal cervical tissue
for biopsy), repeat screening at specified intervals, use of follow-up
HPV testing to detect the presence of oncogenic HPV types, and
excision or destruction of precancerous lesions.
Papanicolaou (Pap) Test
The Pap test (Pap smear, cervical cytology) screens for cellular
abnormalities that are associated with an increased risk of cervi-
cal precancerous lesions and cervical cancer. In the case of abnor-
mal results, colposcopy and biopsy are used to determine whether
abnormal tissue is precancerous or cancerous and, if the former,
the severity (grade) of the lesion in order to identify the potential
for progression. The Pap test involves obtaining a sample of cervi-
cal cells for microscopic examination and either placing them on
a slide (conventional cytology) or in a vial of liquid preservative
(automated liquid-based cytology, which has largely replaced con-
ventional cytology in the United States). Approximately 55million
Pap tests are performed each year in the United States; approxi-
mately 3.5 million (~6.4%) are abnormal and require medical
50 Section II screening for cancer in normal and at-risk populations

Table8.1 Summary of Cervical Cancer Screening Guidelines for Average-Risk Women

Professional ACS/ASCCP/ASCP (2012) USPSTF (2012) ACOG (2012)

Organizations
When to start screening
Statement about annual
screening
Screening method and intervals
Cytology
2129years of age
3065years of age
HPV co-test
(cytology + HPV test
administered together)
2129years of age
3065years of age
Primary HPV testing
When to stop screening
Screening among those
immunized against HPV
16/18
Age 21. Women aged < 21years should
not be screened regardless of the age
ofsexual initiation or other risk factors.
Women of any age should not be
screened annually by any screening
method.
Every 3years.
Every 3years
HPV co-testing should not be used for
women aged < 30years.
Every 5years; this is the preferred method. For women who want to extend the
For women aged 3065years,
screeningby HPV testing alone is not
recommended in most clinical settings.
Aged > 65years with adequate
screening history.
Women at any age with a history of
HPVvaccination should be screened
according to the age-specific
recommendations for the general
population.
Age 21. Recommend against screening
women aged < 21years.
Women of any age are not recommended
to be screened annually by any screening
method.
Every 3years.
Every 3years
Recommend against HPV co-testing
women aged < 30years.
screening interval, HPV co-testing every
5years is an option.
Recommend against screening for cervical
cancer with HPV testing (alone or in
combination with cytology) in women age
< 30years.
Aged > 65years with adequate screening
history.
The possibility that vaccination might
reducethe need for screening with cytology
alone or in combination with HPV testing is
not established. Given these uncertainties,
women who have been vaccinated should
continue to be screened.
Age 21 regardless of the age of onset of
sexual activity. Women aged < 21years
should not be screened regardless
of age at sexual initiation and other
behavior-related risk factors.
Among women aged 3065years,
annual cervical cancer screening should
not be performed. Patients should be
counseled that annual well-woman visits
are recommended even if cervical cancer
screening is not performed at each visit.
Every 3years.
Every 3years.
HPV co-testing should not be performed
in women aged < 30years.
Every 5years; this is the preferred
method.
Not addressed.
Aged > 65years with adequate screening
history.
Women who have received the HPV
vaccine should be screened according to
the same guidelines as women who have
not been vaccinated.

Adapted from Cervical Cancer Screening Guidelines for Average-Risk Women, CDC Website; ACS/ASCCP/ASCP: American Cancer Society/American Society for Colposcopy
and Cervical Pathology/American Society for Clinical Pathology (Saslow et al., 2012); USPSTF: US Preventive Services Task Force (Moyer et al., 2012); ACOG: American College
of Obstetricians and Gynecologists (ACOG Practice Bulletin No. 131: Screening for Cervical Cancer. ACOG Committee on Practice Bulletins-Gynecology. Obstet Gynecol. 2012
Nov;120(5):12221238. ACOG: American College of Obstetricians and Gynecologists.

follow-up. There is consistent and compelling evidence of the
effectiveness of the Pap test in reducing cervical cancer incidence
and mortality, leading to its adoption in all developed and many
developing countries. Yet, despite the well-documented effective-
ness of the Pap test in reducing cervical cancer rates, it is only
moderately accurate in that it does not achieve concurrently high
sensitivity (the percentage of true-positive cases) and specificity
(the percentage of true-negative cases).
HPV Testing
HPV testing is used to detect infection with oncogenic HPV types
in cervical tissue. In the United States, it is sometimes employed
as a cotest with the Pap smear for routine screening of average-risk
women aged 3065. It is also used to triage women with indeter-
minate or low-grade abnormal Pap test results for further eval-
uation. HPV testing has been shown to be significantly more
sensitive than the Pap test, allowing for more accurate early detec-
tion and treatment of precancerous lesions missed by the Pap test.
In the only randomized trial of screening that has been con-
ducted, the use of the HPV test alone was associated with a sig-
nificant decline in the rates of advanced cervical cancers and
associated deaths among previously unscreened women, as com-
pared with an unscreened control group. In contrast, there was
no significant reduction in the rates of deaths among previously
Table8.2 Summary of Current Guidelines for Follow-Up Management of Abnormal Cervical Cancer Screening Results

Population Pap Test and/or HPV Testing Results Follow-up Management

Younger than 21years of age N/A N/A
(no screening according to recommendations of all
professional guidelines)
2129years of age If Pap test result is uncertain Colposcopy
and
HPV follow-up management test result is
positive
or
If Pap test result shows moderate- or high-grade abnormal
lesion or suggests cancer
If Pap test result is uncertain Repeat Pap test in 3years.
or
If Pap test result is negative
and
HPV follow-up management test result is negative
2124years of age If Pap test result is uncertain Repeat Pap test in 1year
or [preferred]
If Pap test result shows low-grade abnormal lesion or
Perform a specialized follow-up HPV test (that tests for the
most high-risk HPV subtypes) *
[acceptable to perform only if Pap test result is uncertain].
If Pap test result is uncertain, but high-grade abnormal lesion Colposcopy
cannot be ruled out
or
If Pap test result is high-grade abnormal lesion
3065years of age If Pap test result shows high-grade lesion Surgery to remove lesion
(provided that patient is not pregnant)
[acceptable]
or
Colposcopy
[acceptable].
If Pap test result shows low-grade lesion Repeat co-testing in one year
and [preferred]
HPV co-test is negative or
Colposcopy
[acceptable].
If Pap test result shows low-grade lesion Colposcopy
and
No HPV co-test was performed
or
If Pap test result shows low-grade lesion
and
HPV co-test result is positive
3065years If Pap test result is uncertain Perform a specialized follow-up HPV test (that tests for the
most high-risk HPV strains)*
[preferred]
or
Repeat Pap test in one year
[acceptable].
(continued)
52 Section II screening for cancer in normal and at-risk populations

Table8.2(Continued)

Population Pap Test and/or HPV Testing Results Follow-up Management

If Pap test result is negative Repeat co-testing* at one year
and [acceptable]
HPV co-test result is positive or
Perform a specialized follow-up HPV test (that tests for the
most high-risk HPV strains)*
[acceptable].
If at the one year repeat co-testing*, the HPV test* is positive Perform colposcopy.
or
The Pap test is uncertain or shows a low-or high-grade lesion
or
If the specialized follow-up HPV test* is performed and is
positive
If the specialized follow-up HPV test* is performed and is Repeat co-testing* at one year.
negative
If Pap test result is negative Return to routine screening (co-testing every 5years or Pap
and test every 3years).
HPV co-test result is negative
Older than 65years N/A (no screening according to recommendations of all
professional guidelines)

* There are two general types of HPV tests:one that is employed in co-testing with the Pap test and one that is employed as a follow-up test (referred to as a specialized follow-up HPV
test within the table).
Based on the 2012 Updated Consensus Guidelines for the Management of Abnormal Cervical Cancer Screening Tests and Cancer Precursors (Massad etal., 2013); note that not all
possible test results (Pap test and/or HPV testing) are included.

unscreened women who underwent cytologic screening alone.6
However, HPV testing also has lower specificity, leading to more
frequent false positive results and subsequent referral to colpos-
copy, which can be associated with adverse medical and psycho-
social outcomes.4,5 Consequently, the consensus of the major US
medical organizations is that the current evidence is too limited to
determine the net benefit of HPV testing alone.4,5 This consensus
is reflected in current screening guidelines in the United States, 4,5
which recommend co-testing (the Pap test and HPV testing con-
ducted concurrently) for women aged 3065 (Table 8.1).
HPV Vaccination
Complementing screening and follow-up management methods
for the control of cervical cancer is vaccination for the primary
prevention of infection with oncogenic strains of HPV. Two HPV
vaccines have been licensed for use in the United States: a quadri-
valent vaccine (Gardasil, licensed in 2006), which protects against
infection with two oncogenic HPV strains (16 and 18), as well as
two non-oncogenic strains (HPV 6, 11) which are associated with
genital warts; and a bivalent vaccine (Cervarix, licensed in 2007),
which protects against infection with the same two oncogenic HPV
strains as Gardasil (16 and 18). Both vaccines are administered in
a series of three doses over a six-month period, and are recom-
mended for 11- to 12-year-old girls for cervical cancer prevention,
and are also approved for 9-, 10-, and 11-year old girls. For females
who have not completed a three-dose vaccine series, vaccination
is recommended for 13- through 26-year-olds. Both vaccines are
highly efficacious in preventing lesions caused by the targeted HPV
strains. The use of the vaccines for males remains controversial for
cervical cancer prevention. In 2011, the Advisory Committee on
Immunization Practices recommended routine administration of
the quadrivalent vaccine for males ages 1112, with catch-up vacci-
nation to age 21. The available vaccines have demonstrated efficacy
in protecting against both genital warts and precancerous anal and
penile lesions in males7. However, it is unclear whether HPV vacci-
nation of males will lead to a reduction in oncogenic HPV infection
in females. Moreover, HPV has been associated with other cancers,
notably a subset of lung cancer, as well as head and neck cancers,
the incidence of which is more than two times higher in males than
females, suggesting that vaccination of both males and females
could potentially decrease the incidence of these cancers.
ROUTINE CERVICAL CANCER SCREENING
AND FOLLOW-UP MANAGEMENT
Psychosocial Issues Related to Cervical Cancer
Screening
Despite the efficacy of screening and follow-up methods, adher-
ence to screening guidelines and follow-up recommendations is
less than optimal. Half of women with newly diagnosed cervi-
cal cancer have never had a Pap test, and another 10% have not
had one in the past five years. Adherence rates to recommended
follow-up after an abnormal Pap test result have been reported to
 Chapter8 cervical cancer screening 53

be as low as 25%75% in the most vulnerable populations, that
is, those who are underserved or young. Both access to care and
psychosocial barriers strongly contribute to these low screening
and follow-up rates.8
Access to Care Barriers
Factors related to healthcare access barriers include sociodemo-
graphic characteristics (less education, low income, low accul-
turation levels, and unemployment), as well as lack of insurance
and a usual source of health care. Other access barriers for women
of minority and low socioeconomic status (SES) include distance
from the clinic, long waiting times, and lack of financial resources
to make copayments for recommended tests or follow-up
treatments.
Psychosocial Barriers
In addition to access barriers, women who are nonadherent to rec-
ommended screening and follow-up recommendations are char-
acterized by signature profiles of psychosocial barriers that can
be categorized based on the Cognitive-Social Health Information
Processing (C-SHIP) model (Table 8.3), which provides an inte-
grative framework for identifying the factors that influence the
uptake and maintenance of health-related behaviors (Table 8.3).9
On the basis of the extant literature, the model holds that indi-
viduals encodings (risk perceptions and knowledge), beliefs and
expectancies about screening and treatment outcomes, health-
related goals and values, screening- and cancer-related affects and
emotion, and self-regulatory competencies interact in a dynamic
way to facilitate or undermine adherence to screening and follow-
up recommendations.
First, with regard to cervical cancer-relevant encodings, low
perceived risk for cervical cancer is common, particularly among
underserved women of low SES.8 Studies of US minority women
have shown that those who perceive that they are at low risk for
cervical cancer are less adherent to screening recommendations.
Inadequate risk-related knowledge, another encoding-related
variable and one that is associated with low health literacy, is also
related to low adherence to initial screening and follow-up detec-
tion after an abnormal screening test result.8,10
Second, beliefs about cervical cancer screening, including a
womans expectancies about the effectiveness of screening in
preventing cervical cancer, and her self-efficacy for undertaking
screening have been shown to be associated with better adherence
to screening and follow-up regimens. For example, womens dis-
trust in the medical benefits of screening and fatalistic beliefs that
cervical cancer is incurable are linked to lower rates of screening
and adherence to recommended follow-up of abnormal screening
results.8 In addition, when women lack the self-confidence that
they will be able to attend screening appointments and deal effec-
tively with abnormal screening results, adherence to screening
and follow-up management recommendations is lower.10 Other
beliefs that act as barriers among underserved women include the
view that it is better not to know, that the test is bad luck, that the
treatment for cancer is worse than the disease itself, that a health
preventive action is not necessary unless symptoms are present,
and that cutting the cancer will lead to its spreading.8
Third, values and goals play a role in adherence to screening
and follow-up recommendations. African American women place
a high value on fertility and therefore are more likely to refuse
follow-up procedures that they perceive to be associated with
adverse pregnancy outcomes.10 In contrast, screening seems
beneficial when women hold the value that they are morally
responsible to sexual partners to be aware of their HPV infection
status, and this value has been associated with higher adherence.
Further, women who view their ability to prevent cervical cancer
as empowering them are more likely to be adherent.
Fourth, the cancer-related affects and emotions that are acti-
vated by screening and follow-up procedures significantly influ-
ence adherence behaviors. Abnormal Pap and/or HPV test results
are often associated with increased anxiety, confusion, and fear,
as well as negative feelings about the self (such as feeling less
attractive and tarnished).10 Among women scheduled for their

Table8.3 Types of Cognitive-Affective Mediating Factors Posited by the C-SHIP Model in Health Information Processing and Execution
ofHealth-Protective Behaviors

Cervical risk encodings
Cervical risk beliefs and expectancies
Cervical risk goals and values
Cervical risk affects and emotion
Cervical risk self-regulatory
competencies and skills
Appraisals regarding ones personal health risks and vulnerabilities (e.g., a womans perception of her cervical cancer
risk), and health-relevant information (e.g., how well a woman understands the role of screening and the meaning of
screening test results)
Specific beliefs and expectations activated in health information processing (e.g., expectancies about being able
to obtain effective medical care for screening abnormalities), as well as self-efficacy expectancies (e.g., a womans
confidence in her ability to manage the anxiety she might experience in waiting for screening test results)
Desired and valued health outcomes (e.g., a womans goal to adhere to recommendations for preventing cervical
cancer) and their subjective importance (e.g., how important it is for a woman to avoid the stigma of others knowing
she is infected with a sexually transmitted disease).
Affective states (emotions) activated in health information processing (e.g., a womans worries about developing
cervical cancer, her embarrassment about undergoing the Pap cervical screening test, and her anxiety about a
positive screening test result)
Skills for dealing with barriers to engaging in health-protective behaviors (e.g., for managing the distress she might
experience in adhering to follow-up recommendations after an abnormal screening test result, and for overcoming
barriers to adhering to screening recommendations)

Adapted from Table 1 in Psychological Bulletin (Miller SM, Shoda Y, Hurley K: Applying cognitive-social theory to health-protective behavior: Breast self-examination in cancer screening.
1996;119:7094.) Copyright by the American Psychological Association.
54 Section II screening for cancer in normal and at-risk populations
first colposcopy examination, distress is greater among those
who anticipate pain and discomfort during the procedure, which
undermines adherence. After colposcopy, some women report that
the colposcopic examination itself is uncomfortable, undignified,
and an invasion of the body, and these feelings engender a sense
of vulnerability and helplessness, potentially reducing follow-up
adherence. Elevated levels of distress, in combination with overes-
timation of cervical cancer risk, have been associated with lower
rates of adherence to screening and recommended follow-up.
Finally, in order to be able to participate in screening and
follow-up, individuals must be able to develop specific action
plans, not only for managing practical and access barriers (e.g.,
developing strategies for not forgetting the appointment and
dealing with transportation issues, cost of care, and family and
work responsibilities), but also for managing the negative affects
that can be activated by the screening process and recommended
follow-up of abnormal results. Studies have shown that a lack of
self-regulatory skills to cope with the distress and anxiety asso-
ciated with screening and follow-up act as powerful barriers to
adherence.11
The monitoring attentional style of women (i.e., the tendency to
attend to and amplify cervical cancer-related threats)9 is associ-
ated with a specific pattern of cognitive-affective responses to can-
cer risk, including greater perceived health-related risk, greater
distress, greater value placed on health-related information, and
more decisional regret. High-monitoring women are more likely
to anticipate an abnormal result if they are screened, and to view it
as more serious, triggering distress and potentially undermining
adherence to follow-up recommendations. Therefore, high moni-
tors represent a psychologically vulnerable population.
Interventions to Increase Routine Cervical Screening
and Adherence to Follow-Up Recommendations
Effective interventions have been developed to increase screen-
ing rates and follow-up adherence by improving access to the
healthcare system,10,12 involving the reduction of practical barri-
ers (time, distance, transportation, dependent care, and admin-
istrative procedures), as well as economic barriers (out of pocket
expenses for screening transportation and payment vouchers).
Interventions directed at providers, including assessment of
screening services offered and/or delivered to women and provi-
sion of feedback about how to improve access to these services,
have also been found to be effective.
In addition, patient navigation addresses access to care barri-
ers, especially among underserved racial and ethnic minority
groups.13 Generally, this approach has involved a navigator pro-
viding one-on-one patient assistance to overcome health system,
educational, and practical barriers to timely care, as well as to pro-
vide psychosocial support. This approach has been applied suc-
cessfully to improve adherence to colposcopy and reduce time to
diagnosis after an abnormal Pap test result, as well as to improve
the detection of cervical cancer at an earlier stage.
Several types of interventions focus on assessing and address-
ing patient-level psychosocial barriers to screening and follow-up
adherence.10,14 Figure 8.1 depicts the disease process pathways
from HPV exposure to cervical cancer and shows the points along
the pathways where interventions associated with the five C-SHIP
constructs have been delivered. Interventions designed to over-
come barriers to screening uptake, which include personalized
invitations to participate in screening, and reminder postcards,
letters, and calls, increase adherence by enhancing the relevance
of screening and improving knowledge about the need for screen-
ing.12 One-on-one education has also been shown to increase
screening uptake, especially when the information is delivered by
lay individuals and is culturally targeted (e.g., framing the health
information so that it appeals to individuals of a specific ethnic
group).14
Psychosocial interventions to promote adherence to follow-up
recommendations use a combination of approaches (e.g., per-
sonalized letters, telephone reminders, and educational bro-
chures) designed to simultaneously improve knowledge and
raise perceived risk.10 Building on these approaches, more com-
prehensive tailored and targeted counseling-based interventions
have been shown to increase follow-up adherence, especially
among low-income populations. In barriers counseling, the
messages are designed to assess and address the patients signa-
ture cognitive-affective barriers that undermine adherence. For
example, two studies examined the effects of tailored telephone
counseling designed to assess and address cognitive, affective, and
self-regulatory barriers to adherence to colposcopy among low
SES, primarily African American women who had received an
initial abnormal Pap test result.15,16 Both randomized trials found
that the counseling intervention improved adherence to an initial
scheduled colposcopy. A recent study comparing tailored print
and telephone delivery channels showed that telephone barriers
counseling was more effective than print messaging in increasing
adherence to the initial colposcopy, as well as follow-up adherence
over the next 12months.11
HPV TESTING AND HPV VACCINATION:
ASSESSING AND ADDRESSING
PSYCHOSOCIAL BARRIERS
Psychosocial Issues Related to HPV Testing
The most recent population-based survey reports that 69.2% and
91.8% of men and women, respectively, in the United States have
heard of HPV, and that 76.9% and 92.6% of men and women,
respectively, have knowledge of the association of HPV and cer-
vical cancer.17 Since HPV is a sexually transmitted infection,
HPV testing can be associated with an adverse psychosocial
impact. A cross-sectional study conducted in England18 found
that women with normal Pap test results who tested HPV posi-
tive were more anxious than those who were HPV negative and
also more anxious than those who had abnormal or unsatisfactory
Pap test results. Further, both anxiety and distress were higher
among those who tested HPV positive. HPV positive women also
demonstrated significantly greater concerns about their sexual
relationships than HPV negative women, irrespective of their Pap
smear result, and about a third of women who tested HPV positive
reported feeling worse about previous and future sexual partners.
Findings of a systematic review19 indicate that emotional
responses to testing HPV positive include stigma, anxiety, stress,
anger, confusion, shock, and self-blame, worries about possible
transmission to a partner and whether a partner has been unfaith-
ful, effects on fertility, and impact on sexual relations. The accept-
ability of HPV testing is generally high, as reported by women
responding in the context of hypothetical scenarios. To date,
 Chapter8 cervical cancer screening 55

C-SHIP Constructs
A. Health-relevant encodings
Psychosocial B. Health-relevant beliefs and expectancies
primary Interventions targeting all C-
C. Health-relevant goals and values
prevention SHIP constructs (A, B, C, D, E)
HPV D. Health-relevant affects
interventions vaccination E. Health-relevant self-regulatory competencies and skills

- Age at sexual initiation Biobehavioral mechanisms

- Number of sexual Young age at first intercourse, multiple sexual partners, multiple full-term pregnancies, long-term Time
partners oral contraceptive use, young age at first birth, history of smoking, stress, adherence to screening (years or
- Partners previous sexual recommendations, and adherence to follw-up management recommendations after abnormal decades)
behavior screening results
- Condom use

Latent HPV Productive Low-grade High-grade Invasive

HPV exposure
infection HPV infection SIL* SIL* cervical cancer

HPV Testing
and/or Cytology Screening;
Abnormal screening result
Host immune factors follow-up management,
including treatment of SIL*

Interventions targeting all C-SHIP Stress, Social support, Interventions targeting all C- Psychosocial
constructs, but especially D, E smoking, HIV/ SHIP constructs, but especially Impact
immunosuppression A, C, D, E (stigma, anxiety, risk
perception, etc.)

* SIL: squamous intraepithelial lesions

Adapted with permission from Annals of Behavioral Medicine (Waller et al. Human Papillomavirus and Cervical Cancer: Issue for Biobehavioral and
Psychosocial Research, 2004, 27, 6879)

Figure8.1 Schematic representation of the pathway from HPV exposure to invasive cervical cancer, showing the factors that moderate progression and points for
intervention.

there have been no studies reporting development or evaluation of
interventions addressing the psychosocial impact of HPV testing,
in either females or males.
Psychosocial Issues and Interventions
to Promote HPV Vaccination Uptake
HPV vaccination uptake, or vaccination coverage, defined as the
number of the three recommended doses that have been received,
is an emerging issue for pre-sexual youngsters and their par-
ents. Vaccination coverage of more than one dose among females
increased from 25% in 2007 (shortly after its licensure in 2006)to
53% in 2011, but did not increase appreciably between 2011 and
2012 (54%). In 2012, only one third of 13- to 17-year-old girls and
about 7% of boys in this age group completed three doses, 20 which
is far below the US Healthy People 2020 target of 80%.21
Vaccine safety and efficacy are key parental concerns in deci-
sions related to vaccination uptake for children.21 Despite the fact
that vaccination acceptance among both female and male adoles-
cents and their parents is higher when recommended by a health-
care provider,22 clinicians indicate limited intent to vaccinate their
adolescent patients, particularly for youth at the lower end of the
recommended age range.23 Arecent systematic review, focused on
adolescent girls and young women, identified a total of 21 barriers
based on 22 studies. Cost was the most frequently reported bar-
rier, followed by the perception that the vaccine was not needed,
concerns about vaccine safety, and concerns about side effects. 24
Interventions to promote vaccine uptake are few to date, but
have been implemented at the policy, provider, parent/family, and
patient levels. With regard to policy level efforts, vaccine-related
legislation has been enacted in 19 US states and the District of
Columbia, including mandates requiring vaccination of girls
prior to middle school enrollment, requests for the provision of
set-aside funds to cover the cost of delivering the vaccine, and
directives for compulsory education about the vaccine for parents
or guardians of age-appropriate girls. 22 Yet only 35% of providers
in one study always recommended vaccination of their early ado-
lescent patients (the primary target age range for routine vaccina-
tion), and approximately only 50% did so for both middle and late
adolescents/young women.23
At the parent/family and patient level, a recent systematic review
of educational interventions designed to increase HPV vaccine
acceptance in patients (both girls and young women and boys and
56 Section II screening for cancer in normal and at-risk populations
young men) eligible to receive the vaccine, and/or their parents (of
both girls and boys),25 concluded that well-designed studies were
rare and generally did not demonstrate effectiveness. For exam-
ple, while educational interventions increased female and male
adolescents and young adults intentions to receive HPV vaccine
more than parents intentions, there was no evidence that these
intentions were durable or that they translated into increased vac-
cine uptake.25
Given that the goal is completion of the full three-dose series by
all age-eligible adolescents, there is a critical need to increase HPV
vaccine uptake and follow-through. Consequently, the Presidents
Cancer Panel recently issued an urgent call to action in a newly
published report.21 This report recommends three main strategies
to achieve the goal of increasing HPV vaccine uptake:(1)reduc-
tion of missed clinical opportunities to recommend/administer
HPV vaccination, (2)increase in parents/adolescents acceptance
of vaccination, and (3)maximization of access to HPV vaccina-
tion by parents and adolescents. Further research is needed to
evaluate the optimal techniques for enacting these strategies.21
CONCLUSIONS AND FUTURE DIRECTIONS
Cervical cytology, together with effective follow-up manage-
ment of abnormal results, has resulted in dramatic reductions in
cervical cancer incidence and mortality within the last 60years.
However, a substantial proportion of underserved minority and
rural women in the United States have not fully shared in reaping
these benefits, in large part due to low adherence to screening and
follow-up management recommendations. Barriers to adherence
include healthcare access barriers, as well as psychosocial barri-
ers, notably low risk-related knowledge and low perceived risk,
distrust in the medical benefits of screening, values and goals that
conflict with adherence behaviors, cancer risk-related distress and
shame, and inadequate self-regulatory competencies for enacting
adherence behaviors.
Substantial research has been conducted in the screening con-
text to develop and evaluate the efficacy of interventions aimed
at healthcare access and psychosocial barriers. Interventions that
target access barriers seem to be effective for low SES and minor-
ity women,10,12 particularly interventions that target physicians,
as well as those that make use of patient navigation. Further, inter-
ventions designed to address psychosocial barriers, by increasing
the personal relevance of the screening test and knowledge about
the need for screening, have been found to be effective.12 With
regard to psychosocial barriers to follow-up adherence recom-
mendations, tailored and targeted counseling interventions have
been shown to be effective,15,16 including the use of personalized
letters, telephone reminders, and educational brochures that are
designed to raise perceived risk, reduce anticipatory distress,
and enhance self-regulatory skills.10 In future research, it will
be important to design and evaluate multicomponent interven-
tions that comprehensively address access to care barriers and
navigational resources, while simultaneously targeting specific
subgroups, tailoring the counseling messages to individual-level
psychosocial barriers, and using channels of message delivery
(e.g., text messaging) that best reach the poor and underserved.
With regard to HPV testing, a relatively large percentage of
women in the United States have heard of HPV and have knowl-
edge of its link with cervical cancer.17 However, HPV testing is
often associated with significant negative psychosocial impact, for
example, adverse emotional responses and concerns about sexual
relationships among individuals testing HPV positive.18,19 More
systematic studies of the psychosocial impact of testing HPV pos-
itive, as well as the cognitive-affective reactions to testing HPV
positive among ethnic minority and rural women in the United
States, are needed to develop interventions to improve adherence,
particularly for vulnerable populations.
Finally, with regard to HPV vaccination, a number of factors have
been identified that potentially account for limited uptake among
girls in the United States, including lack of provider vaccination rec-
ommendation.22 Parental concerns about safety and efficacy, as well
as a number of practical and cognitive-affective barriers, including
cost and lack of perceived benefit, also limit the uptake of vaccina-
tion.21,24 Well-designed studies are needed that evaluate interven-
tions to promote vaccine uptake, especially among young women
and men of low SES. It may be particularly important to assess
and address maladaptive perceptions, as well as limited uptake, of
HPV vaccination among parents and targeted adolescents, from
a theoretically based framework. Finally, it will be important to
develop and evaluate risk-reduction strategies for cervical cancer
that address such factors as early sexual initiation and smoking, to
enhance early prevention and dissemination efforts.
ACKNOWLEDGMENTS
Work on this chapter was supported by the National Institutes of
Health grants R01 CA104979; P30 CA06927; RO1 CA 104979; R01
CA76446; and RC1 CA145063; as well as the American Cancer
Society grant ACS TURSG 02-227-01. We thank Mary Anne Ryan
for her technical assistance on this manuscript.
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 CHAPTER9
Breast Cancer Screening
Rory C.Weier, Sarah A.Reisinger,
and Electra D.Paskett
OVERVIEW
Among women in the United States, breast cancer is the most
common non-skin cancer and the second leading cause of cancer
death, following lung cancer.1 In 2013, 232,340 new cases of inva-
sive breast cancer and 64,640 new cases of in situ breast cancer
were expected among women in the United States.1 If this breast
cancer incidence rate remains constant, a woman born today will
have a one in eight chance of developing invasive breast cancer in
her lifetime.2
Although screening offers the potential for earlier detection
of tumors, resulting in better outcomes, screening modalities
are imperfect, and breast cancer screening tests are not utilized
optimally by all women.1,3,4 This chapter focuses on breast cancer
among women and describes risk factors; validated early detec-
tion methods; screening patterns; factors associated with screen-
ing uptake, including psychological factors; community-level
interventions; and suggestions for future work.
RISK FACTORS
A number of factors influence an individual womans risk of
developing breast cancer over her lifetime; some cannot be
changed, and others have the potential to be modified to reduce
risk. Asummary of common non-modifiable and modifiable risk
factors is provided in this section.
Non-modifiable risk factors13 include age, family health his-
tory, gender, genetics, mammographic breast density, personal
health history, and race and ethnicity. With regard to age, a
womans chance of developing breast cancer increases as she
ages. With regard to family history, a family history of breast
cancer in first-degree relatives increases the risk of developing
breast cancer. With regard to gender, women represent 99% of
all breast cancer cases. With regard to genetics, less than 10%
of incident breast cancer cases are due to genetic mutations,
typically of the BRCA1 and BRCA2 genes. With regard to mam-
mographic breast density, breast density tends to diminish with
age; dense breast tissue, such as glandular and connective tis-
sue, looks white on a mammogram, making it difficult to detect
tumors. Women with a higher proportion of dense breast tis-
sue are at a higher risk of being diagnosed with breast cancer
than women with less or no dense breast tissue. With regard
to personal health history, women whose mothers were given
diethylstilbestrol (DES) during pregnancy, who were younger
than age 12 at menarche or who went through menopause
after age 55, who received radiation treatment to the chest for
another type of cancer or medical condition as children or
young adults, or who have a history of lobular carcinoma in situ
or benign breast disease have increased risk of developing breast
cancer. Apersonal history of breast cancer places women at an
increased risk of primary cancer in the contralateral breast.
With regard to race and ethnicity, compared to other racial and
ethnic groups in the United States, non-Hispanic white women
experience higher incidence rates of breast cancer. However,
African American women experience a higher incidence rate of
breast cancer before age 40 and the highest breast cancer mor-
tality rates of all racial/ethnic groups.
Potentially modifiable risk factors13 are more amenable to
change and include alcohol consumption and physical inactiv-
ity; parity, oral contraceptive use, and breastfeeding practices;
and postmenopausal hormone therapy (PHT), endogenous hor-
mone levels, bone mineral density, and weight status. Women
who drink at least one alcoholic beverage per day and are physi-
cally inactive are at a higher risk of developing breast cancer.
Women who have had no children or who had their first child
after age 30, who have recently used oral contraceptives, and
who have never breastfed or who have breastfed less than a year
are at a slightly higher risk of developing the disease. Long-term
PHT use, especially combined estrogen and progestin therapy,
is associated with increased risk of developing and dying from
breast cancer.1 Postmenopausal women with high levels of estro-
gen and testosterone as naturally produced by the body have a
higher risk of developing breast cancer than women with lower
levels of endogenous hormones. Women with high bone min-
eral density after menopause are at an increased risk of estro-
gen receptor-positive breast cancer, specifically. Women who are
overweight or obese postmenopause are at a higher risk of devel-
oping breast cancer.
Although women with a family or personal history are at high-
est risk for developing breast cancer, they do not account for the
majority of breast cancer cases.1 In addition to closely monitoring
those at high risk for developing the disease, it is of utmost impor-
tance to encourage all women to make healthy lifestyle choices
and promote regular breast cancer screening.

SCREENING GUIDELINES AND MODALITIES
Risk prediction models are used at the individual level to deter-
mine a womans lifetime risk of developing breast cancer and, at
the population level, to stratify breast cancer screening guidelines
by lifetime risk.4 The Gail model, also known as the Breast Cancer
Risk Assessment Tool, is used to determine a womans long- and
short-term risk of developing breast cancer using information
such as her age, ethnicity, breast biopsy and cancer history, age
at menarche, parity, and age at first live birth.4 However, the
Gail model is not appropriate for estimating risk among women
with a significant family history of breast cancer whose rela-
tives diagnosed with breast cancer have not tested positive for a
BRCA mutation and have not undergone genetic testing them-
selves.4 In these cases, the Claus, Tyrer-Cuzick, BRCAPRO, and
the Breast and Ovarian Analysis of Disease Incidence and Carrier
Estimation Algorithm (BOADICEA) models are more appropri-
ate for assessing risk and probability of an individual carrying a
BRCA mutation.4
As summarized in Table 9.1, current breast cancer screening
guidelines for women differ between the American Society (ACS)
and US Preventive Services Task Force (USPTF) and by level of
lifetime risk.1,3 The ACS recommendations for women of average
and high risk were last updated in 2003 and 2007, respectively.1
The USPTF recommendations were last updated in 2009.3
In addition to the screening guidelines and modalities men-
tioned in Table 9.1, women should be familiar with their breasts
appearance and feel.1 Self breast awareness is at least as effective
in detecting breast cancer as structured breast self-exams, which
are not recommended by the ACS or USPTF.1,3 Although breast
lumps are not always cancerous, changes in the breast should
be reported to a physician as they are noticed. Given the variety
of factors that contribute to a womans risk of developing breast
cancer and the differing ACS and USPTF screening recommenda-
tions, women should speak with their doctor to discuss their level
of risk and breast cancer screening needs.
Mammography
Using X-rays to image breast tissue, radiologists can identify non-
invasive forms of ductal carcinoma in situ and breast cancers that
are too small to detect by physical examination. Mammography
Table9.1 Current ACS and USPTF Breast Cancer Screening Guidelines
American Cancer Society
Average lifetime risk Age 2039 Clinical breast exam (CBE) every three years.
Age 40 Clinical breast exam (CBE) and mammogram
everyyear.
Moderate lifetime risk Women should discuss the benefits and risk of adding
magnetic resonanceimaging (MRI) to annual mammograms
withtheir doctor.
High lifetime risk Add magnetic resonance imaging (MRI) to annual
mammograms beginning at age 30.
Adapted from Nelson HD, Tyne K, Naik A, etal. Screening for Breast Cancer:Systematic Evidence Review Update for the US Preventive Services Task Force. Rockville, MD:Agency for
Healthcare Research and Quality (US); 2009. http://www.ncbi.nlm.nih.gov/books/NBK36392/. Accessed December 18, 2013.
Smith RA, Brooks D, Cokkinides V, Saslow D, Brawley OW. Cancer screening in the United States, 2013:a review of current American Cancer Society guidelines, current issues in cancer
screening, and new guidance on cervical cancer screening and lung cancer screening. CA Cancer J Clin. 2013;63(2):88105. doi:10.3322/caac.21174
Chapter9 breast cancer screening 59
screening has been shown to reduce breast cancer mortality by
women between 39 and 69 years of age, whereas more data are
needed to determine the effect of mammography on mortality
among women age 70 and older.3
Clinical Breast Examination (CBE)
A CBE is often conducted by a physician as part of a routine health
examination.1 For ethical reasons, randomized trials of CBE as
a sole screening modality have not been conducted, and studies
comparing the use of mammography as a sole screening mecha-
nism to the use of mammography and CBE have yielded similar
results in terms of reduced cancer mortality.3
Magnetic Resonance Imaging (MRI)
Magnetic fields are used to create cross-sectional images of the
breast that are extremely detailed. To improve image quality, a
contrast material, such as gadolinium DTPA, is often injected into
the bloodstream prior to the MRI.1 Although the combined use of
mammography and MRI is recommended for women with a high
lifetime risk, no research has investigated the use of mammogra-
phy and MRI among women of average risk, nor is there any indi-
cation that MRI screening affects breast cancer mortality.3
Ultrasonography
Ultrasound uses sound waves to evaluate breast problems that are
found during a screening or diagnostic mammogram or clinical
exam. This imaging method may be used in conjunction with a
mammogram, especially if the patient has dense breasts, but is not
recommended in lieu of mammogram.1
Although screening has the potential to detect tumors early,
resulting in better outcomes, screening may yield false positive
results, and women with noncancerous lesions may undergo
unnecessary treatment.3 The performance of screening modali-
ties can be compared on the basis of their sensitivity (ability to
detect breast cancer when it is present) and specificity (ability to
detect the absence of breast cancer when it is absent) (Table 9.2).
These measures are influenced by a number of factors. For exam-
ple, mammographic sensitivity is affected by patient age, image
quality, and radiologist interpretation.3 Abnormal findings from
breast cancer screening are typically followed by additional imag-
ing or biopsy for diagnostic purposes. 3
US Preventive Services Task Force
Age 5074 Mammogram every two years.
Age 75 Insufficient evidence to assess harms and
benefits of screening.
Women should discuss the benefits and risks of regular, biennial
screening mammograms before age 50 with their doctor.
60 Section II screening for cancer in normal and at-risk populations
Table9.2 Sensitivity and Specificity of Select Cancer Screening
Modalities
Sensitivity Specificity
Mammography 77%95% 94%97%
Clinical breast exam (CBE) 40%69% 88%99%
Magnetic resonance imaging (MRI) 71%100% 81%97%
Adapted from Nelson HD, Tyne K, Naik A, etal. Screening for Breast Cancer:Systematic
Evidence Review Update for the US Preventive Services Task Force. Rockville, MD:Agency
for Healthcare Research and Quality (US); 2009. http://www.ncbi.nlm.nih.gov/books/
NBK36392/. Accessed December 18, 2013.
SCREENING PATTERNS
In the United States, the use of mammography increased in the
1990s, decreased between 2000 and 2005, and returned to 2000
levels by 2006.5 From 2000 to 2006, there was a general decline in
the use of mammography among women who were non-Hispanic
white and insured.5 However, throughout this time period, the
prevalence of mammography use varied widely across the country
and tended to be much lower among women who were uninsured,
had lower income or less education, and were members of select
racial and ethnic minority groups.5
More recent data from the 2010 US Behavioral Risk Factor
Surveillance System (BRFSS) indicate that roughly 80% of women
aged 5074years reported having a mammogram within the past
two years, leaving room for improvement to meet the Healthy
People 2020 objective of increasing the proportion of women who
receive a breast cancer screening consistent with the most recent
guidelines to 81.1%.5,6 The prevalence of mammography use was
highest among 6069-year-olds and 7074-year-olds (81.3% and
82.4%, respectively), non-Hispanic blacks (78.6%), college gradu-
ates (80.8%), women with annual household incomes $75,000
(83.8%), the insured (78.6%), and women with a usual source of
care (78.3%).5 The prevalence of mammography use was lowest
among 4049-year-olds (68.8%), American Indian/Alaska Natives
(63.9%), those with less than a high school diploma (65.9%),
women with annual household incomes $15,000 (63.2%), the
uninsured (50.4%), and women lacking a usual source of care
(43.6%).5 States in the Northeast tended to have a high prevalence
(e.g., Massachusetts [84.2%]), whereas rural and less populated
states tended to have a low prevalence (e.g., Idaho [63.7%]).5
SCREENING PREDICTORS
It is necessary to identify and understand the impact of factors influ-
encing breast cancer screening behavior in order to broaden the use
of breast cancer screening across all eligible women. For example,
health insurance status and type are known to predict screening
behavior.7 Data from the 2005 US National Health Information
Survey (NHIS) indicate that only 38.1% of uninsured women
reported receiving a mammogram in the previous two years, com-
pared to 74.5% of privately insured women aged 4064 and 56.1%
of women insured through Medicaid.7 To address these barriers,
the National Breast and Cervical Cancer Early Detection Program
(NBCCEDP) of the US Centers for Disease Control and Prevention
(CDC) has made free or low-cost breast cancer screening available
to low-income, under- and uninsured women since the early 1990s.8
Between 1991 and 2006, the NBCCEDP helped 1.8million women
receive breast cancer screening; data simulations estimated that this
screening saved 100,800 life-years compared to what would have
happened if women had to obtain screening without the help of the
program, and 369,000 life-years compared to what would have hap-
pened if women received no screening.8
The US Patient Protection and Affordable Care Act of 2010
(ACA) has the potential to further the NBCCEDPs work to allevi-
ate insurance-related barriers to breast cancer screening through
expanded access to care and reductions of out-of-pocket costs. 5
Current and upcoming impacts of the ACA include coverage of
select adult clinical preventative services by Medicare in 2012,
and enhanced federal matching funds for eligible state Medicaid
programs that eliminate cost-sharing for these clinical preven-
tive services in 2013; in 2014, these and other recommended
preventive services for women will be covered at no cost-sharing
for eligible private health plans under state-based insurance
exchanges. 5 Over time, the ACA will increase mammography
use among women eligible for breast cancer screening and will
decrease screening disparities among the under- and uninsured
by expanding coverage.5
However, insurance status and type are just two of many factors
influencing breast cancer screening behavior, so the NBCCEDP
and ACA alone cannot resolve the underutilization of breast can-
cer screening among women in the United States. Other factors
that need to be addressed follow.
Area-Level Capacity
To have met the Healthy People 2010 screening target, county-level
capacity for mammography needed to exceed 1.2 mammogra-
phy machines per 10,000 women aged 40 or older.9 The impact
of inadequate capacity on breast cancer screening utilization was
assessed among women age 40 or older who participated in the
2006 BRFSS and a sample of women age 65 or older enrolled in
Medicare between 2004 and 2005, of whom 9% and 13% lived in
counties with inadequate capacity, respectively.9 Compared to
their counterparts in counties with adequate capacity and con-
trolling for demographic and healthcare factors, the odds of hav-
ing had a mammogram within the past two years among BRFSS
and Medicare participants in counties with inadequate capac-
ity were decreased by 11% (95% CI: 0.800.98) and 14% (95%
CI:0.850.87), respectively.9
Knowledge and Attitudes
A systematic review of peer reviewed articles published in English
between 1988 and 2007, which included 221 studies of nearly
5 million women, found that lack of breast cancer screening
knowledge (adjusted OR = 0.46; 95% CI: 0.350.60) and view-
ing mammography as only necessary in the presence of breast
symptoms (adjusted OR=0.56; 95% CI:0.430.72) or ineffective
or inaccurate (adjusted OR = 0.47) were highly associated with
reduced odds of receiving screening at frequencies similar to
those recommended by ACS and the USPTF.10
Perception of Susceptibility
The systematic review also found that having recently under-
gone a CBE (adjusted OR=9.15; 95% CI:3.4923.98) or Pap test
(adjusted OR=3.45; 95% CI:2.125.62) was strongly associated

with mammography use at frequencies similar to ACS and the
USPTF screening guidelines.10 Apersonal history of benign dis-
ease (adjusted OR=1.95; 95% CI:1.612.36) was a stronger deter-
minant of receiving mammography at intervals comparable to
ACS and the USPTF screening guidelines than family history of
breast cancer (adjusted OR=1.45; 95% CI:1.281.64).10 Another
study found the odds of receiving appropriate mammography
screening were higher among breast cancer survivors (i.e., on an
annual basis) than women in the general population without a
history of breast cancer (i.e., on a biennial basis), controlling for
mammography and CBE compliance.11
Physician Referral
A very strong predictor confirmed by the large systematic
review is healthcare provider recommendation. The lack of
provider-recommended mammography (adjusted OR = 0.16;
95% CI: 0.080.33), having a primary care provider (adjusted
OR=0.41; 95% CI:0.320.53), and a visit to a physician within the
past year (adjusted OR=0.34; 95% CI:0.250.47) have all been
shown to negatively influence mammography utilization at inter-
vals comparable to ACS and the USPTF screening guidelines.10
Physician specialty has been found to be less influential. Patients
of physicians who are not obstetricians and gynecologists were less
likely to undergo mammography screening at frequencies similar
to those recommended by ACS and the USPTF than patients of
ob-gyn practitioners (adjusted OR=0.46).10
Race, Ethnicity, and Immigration Status
The finding of the 2010 BRFSS that mammogram use within the past
two years is higher among non-Hispanic blacks than non-Hispanic
whites is consistent with previous research, but underlying reasons
are unclear.5,12 It may be attributable to national cancer screening
programs like the NBCCEDP or the increased recommendation
of screening to minority patients by physicians who are aware of
disparities.12 However, a study that controlled for both age and
propensity to die showed that white women were 1.38 times more
likely to receive mammograms than African American women
between 2000 and 2001, suggesting that the relationship observed
by other studies was confounded by health status.13 The aforemen-
tioned large systematic review found that women who were recent
immigrants had 46% lower odds of mammography utilization at
intervals comparable to ACS and the USPTF screening guidelines
than women were not recent immigrants (95% CI:0.370.79).10
Socioeconomic Status (SES)
Among a nationally representative sample of over 4,000 older
women enrolled in Medicare, increasing net worth, an indica-
tor of SES, was significantly associated with increasing rates of
biennial mammography screening.14 Controlling for age, race,
education, and geography, three-quarters of women with a net
worth over $100,000 reported receiving a screening mammogram
within the past two years, compared to 60% and 56% of women
with a net worth of $10,000 to $100, 000 and less than $10, 000,
respectively.14
Worry
A meta-analysis of 12 prospective studies testing the relation-
ship between cancer worry and cancer screening found that
breast cancer worry is associated with a stronger likelihood of
Chapter9 breast cancer screening 61
screening, measured prospectively within 1 to 12months follow-
ing the assessment of worry, regardless of how cancer worry was
assessed, and regardless of the screening modality (mammogra-
phy or BSE).15
BREAST CANCER SCREENING
INTERVENTIONS
In light of the multilevel predictors of breast cancer screening utili-
zation, multifaceted screening interventions are needed. This chap-
ter provides an overview of lessons learned from community-based
initiatives, which tend to focus on removing barriers to receiving
proper/standard care. Patient barriers include out-of-pocket costs,
lack of health insurance, cultural and language differences, lack of
information, and logistical challenges, including lack of adequate
transportation, child care, or time off from work.16 Provider bar-
riers include time and financial constraints, lack of staff support,
staff turnover, language and cultural differences, forgetfulness,
and bias. Barriers at the healthcare system level include communi-
cation issues between administrative or office staff and the patient,
difficulty in arranging screening appointments, or inconvenient
locations of facilities.16 Interventions can focus on removing one of
these barriers, or can focus instead on removing multiple barriers
at the patient, provider, or healthcare system level, or any combina-
tion of the three.
The majority of community-based interventions have focused
on populations of underserved groups that are disproportionately
affected by breast cancer and are more likely to fall outside screen-
ing guidelines. Patient-focused interventions typically include
patient reminders, culturally tailored messages and treatments,
or multifaceted interventions that encompass a variety of both
patient- and provider-level interventions to influence behavior
change.16 In general, while patient-targeted screening interven-
tions using reminder letters and phone calls have increased mam-
mography use among women with high educational attainment
or previous mammography, this approach has been less success-
ful among women with lower educational attainment or no his-
tory of mammography. Thus, in such groups, removing cultural
barriers (i.e., native language education, classroom instruction
for patients, and culturally sensitive training for providers) has
proven useful.16 Researchers have suggested that health education
materials must be relative to a patients individual situation and
culture. Removing financial barriers, including providing vouch-
ers and free clinic services, have also proven important in popula-
tions that are diverse in race, ethnicity, and insurance status.
Just as access to care for underserved patients is important,
so is ensuring the adequacy and volume of providers, facilities,
and funding in areas with underserved populations. Studies
of low-income and underinsured populations indicate that
provider-targeted interventions have led to the greatest increases
in screening mammography. However, physicians who treat
underserved populations typically face language barriers and
have fewer resources, greater time pressure, and patient popula-
tions with more comorbidities.16 Interventions utilizing patient
navigators have proven successful in increasing mammographic
screening and offer the ability to overcome some of the limitations
of physicans.17 Patient navigators are a valuable resource in reduc-
ing cancer health disparities and resolving intrapersonal- and
institutional-level barriers, thereby significantly reducing time to
62 Section II screening for cancer in normal and at-risk populations

Table9.3 Intervention Strategies to Overcome Breast Cancer Screening Barriers

Intervention Levels Intervention Types Possible Locations

Patient Invitation letter Individual homes
Mailed patient educational material College campuses
Invitation phone calls Community centers
Home visits Churches
Training activities Social organizations, groups, or networks
Language translation Workplace
Financial incentives
Culturally sensitive patient educational patient training sessions
Provider Organizational change Hospitals
Mailed provider educational material Private practices
Language translation services Clinics
Use of natural helpers/patient navigators
Provider feedback
Provider reminder
Communication training among secretarial and office staff
Healthcare system Care vouchers Hospitals
Parking vouchers Clinics
Transportation vouchers Emergency departments
Organizational change
Relocation of facilities
Language translation services
Communication training among administrative and office staff

diagnosis after an abnormal finding.18 Overall, studies have found
that the use of patient navigators is related to an increase in the
use of mammography17 and the promptness of diagnosis of breast
cancer following abnormal findings.19
Table 9.3 lists intervention strategies for overcoming barriers at
the patient, provider, and healthcare system level.
SUMMARY
It has been estimated that there were 232,340 new cases of invasive
breast cancer, 64,640 new cases of in situ breast cancer, and 40,000
breast cancerrelated deaths among women in the United States
in 2013.1 Epidemiological research has identified factors that place
individuals at increased risk for breast cancer. Some of these fac-
tors are non-modifiable (e.g., age, family and personal health his-
tory, gender, mammographic breast density, race and ethnicity)
while others are potentially modifiable (e.g., alcohol consumption,
physical inactivity, oral contraceptive use, breastfeeding practices,
postmenopausal hormone therapy use, endogenous hormone lev-
els, bone mineral density, and weight status). Using risk predic-
tion models, the ACS and USPTF have developed guidelines for
general screening and screening among women at elevated levels
of risk for breast cancer.
Though mammography and CBEs are imperfect in their ability
to detect breast cancer when it is present and to detect the absence
of breast cancer when it is absent, breast cancer screening nev-
ertheless has the potential to reduce breast cancerrelated mor-
tality among women, and men, in the United States and across
the globe. As suggested by simulations on NBCCEDP data, the
number of life-years saved among women participating in breast
cancer screening programs that provide free or low-cost breast
cancer screening to low-income, under- and uninsured women
far exceeds what would have happened if these women were not
screened at all.8
Unfortunately, adherence to ACS and USPTF screening guide-
lines is suboptimal among women in the United States, falling
short of the Healthy People 2020 objective of increasing the pro-
portion of women who receive breast cancer screening within
current guidelines to 81.1%. 5 As indicated by data from the 2010
BRFSS, differences in the prevalence of mammography across
the United States exist on the basis of geography, age, race/
ethnicity, indicators of SES (e.g., education, annual household
income), and healthcare access and utilization. 5 The reasons
underlying differences in the utilization of breast cancer screen-
ing must be identified and understood in order to intervene at
multiple levels.

Nationally, the ACA has the potential to help individuals over-
come insurance-related barriers to breast cancer screening through
expanded access to care and reductions of out-of-pocket costs.5 In
conjunction with the ACA and programs implemented at the national
level like the NBCCEDP, interventions are needed at other levels to
address multifaceted barriers to breast cancer screening. This chapter
has focused specifically on lessons learned from community-based
interventions. Given that provider recommendation is a very strong
determinant of breast cancer screening behavior, research sug-
gests that interventions can also target physicians to reach screen-
ing benchmarks. However, targeting physicians is also necessary
for community-based initiatives and would ensure that there are an
adequate number of well-trained providers and facilities in order to
have the capacity to conduct mammography and other breast can-
cer screenings in their service area. Additionally, patient navigators
specifically trained to meet the unique needs of various populations
have found successful ways to bridge between patient-, provider-, and
healthcare systemlevel gaps in breast cancer screening and care.
Last but not least, it is extremely important to remember that
although the breast cancer diagnosis rate has increased, the over-
all breast cancer death rate has dropped steadily since 1989. It has
been estimated that nearly 3million women alive in the United
States at the beginning of 2012 had a history of breast cancer.1
Currently, health maintenance, screening practices, and emo-
tional effects of cancer treatment related to anxiety, depression,
and stress among breast cancer survivors are not well understood
when compared to the general population of women in the United
States. As a result, future research is needed to examine the factors
that influence adherence to current screening guidelines specifi-
cally among survivors of breast cancer.
REFERENCES
1. American Cancer Society. Breast cancer facts and figures. 2013.
http://www.cancer.org/acs/groups/content/@research/documents/
document/acspc-040951.pdf.
2. National Cancer Institute. Breast cancer risk in American women.
2012. http://www.cancer.gov/cancertopics/factsheet/detection/
probability-breast-cancer.
3. Nelson HD, Tyne K, Naik A, etal. Screening for Breast
Cancer:Systematic Evidence Review Update for the US Preventive
Services Task Force. Rockville, MD:Agency for Healthcare Research
and Quality (US); 2009. http://www.ncbi.nlm.nih.gov/books/
NBK36392/. Accessed December 18, 2013.
4. Smith RA, Brooks D, Cokkinides V, Saslow D, Brawley OW. Cancer
screening in the United States, 2013:a review of current American
Cancer Society guidelines, current issues in cancer screening, and
new guidance on cervical cancer screening and lung cancer screen-
ing. CA Cancer J Clin. 2013;63(2):88105. doi:10.3322/caac.21174.
5. Miller JW, King JB, Joseph DA, Richardson LC, Centers for Disease
Control and Prevention (CDC). Breast cancer screening among adult
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women:Behavioral Risk Factor Surveillance System, United States,
2010. MMWR. 2012;61 Suppl:4650.
6. US Department of Health and Human Services. Office of Disease
Prevention and Health Promotion. Healthy People 2020. http://www.
healthypeople.gov/2020/.
7. Ward E, Halpern M, Schrag N, etal. Association of insurance with
cancer care utilization and outcomes. CA Cancer J Clin. 2008;58(1):
931. doi:10.3322/CA.2007.0011
8. Hoerger TJ, Ekwueme DU, Miller JW, etal. Estimated effects of
the National Breast and Cervical Cancer Early Detection Program
on breast cancer mortality. Am J Prev Med. 2011;40(4):397404.
doi:10.1016/j.amepre.2010.12.017
9. Elkin EB, Ishill NM, Snow JG, etal. Geographic access and the
use of screening mammography. Med Care. 2010;48(4):349356.
doi:10.1097/MLR.0b013e3181ca3ecb
10. Schueler KM, Chu PW, Smith-Bindman R. Factors associated with
mammography utilization:a systematic quantitative review of the
literature. J Womens Health 2002. 2008;17(9):14771498. doi:10.1089/
jwh.2007.0603
11. Duffy CM, Clark MA, Allsworth JE. Health maintenance and screen-
ing in breast cancer survivors in the United States. Cancer Detect
Prev. 2006;30(1):5257. doi:10.1016/j.cdp.2005.06.012
12. Shi L, Lebrun LA, Zhu J, Tsai J. Cancer screening among racial/
ethnic and insurance groups in the United States:a comparison
of disparities in 2000 and 2008. J Health Care Poor Underserved.
2011;22(3):945961. doi:10.1353/hpu.2011.0079
13. Bynum JPW, Braunstein JB, Sharkey P, Haddad K, Wu AW. The
influence of health status, age, and race on screening mammogra-
phy in elderly women. Arch Intern Med. 2005;165(18):20832088.
doi:10.1001/archinte.165.18.2083
14. Williams BA, Lindquist K, Sudore RL, Covinsky KE, Walter LC.
Screening mammography in older women:effect of wealth and
prognosis. Arch Intern Med. 2008;168(5):514520. doi:10.1001/
archinternmed.2007.103
15. Hay JL, McCaul KD, Magnan RE. Does worry about breast
cancer predict screening behaviors? a meta-analysis of the pro-
spective evidence. Prev Med. 2006;42(6):401408. doi:10.1016/j.
ypmed.2006.03.002
16. Masi CM, Blackman DJ, Peek ME. Interventions to enhance breast
cancer screening, diagnosis, and treatment among racial and ethnic
minority women. Med Care Res Rev. 2007;64(5 Suppl):195S242S.
doi:10.1177/1077558707305410
17. Freeman HP. Patient navigation:a community centered approach to
reducing cancer mortality. J Cancer Educ. 2006;21(1 Suppl):S1114.
doi:10.1207/s15430154jce2101s_4
18. Tejeda S, Darnell JS, Cho YI, Stolley MR, Markossian TW,
CalhounEA. Patient barriers to follow-up care for breast and cervi-
cal cancer abnormalities. J Womens Health 2002. 2013;22(6):507517.
doi:10.1089/jwh.2012.3590
19. Paskett ED, Katz ML, Post DM, etal. The Ohio Patient
NavigationResearch Program:Does the American Cancer
SocietyPatient Navigation Model Improve Time to Resolution
inPatients with Abnormal Screening Tests? Cancer Epidem
BiomarPrev. 2012;21(10):16201628. doi:10.1158/1055-9965.
EPI-12-0523
 CHAPTER10
Prostate Cancer Screening
Ronald E.Myers, Amy Leader, Melissa DiCarlo,
Charnita Zeigler-Johnson, and Edouard Trabulsi
VITAL STATISTICS AND SCREENING
Approximately one in seven men in the United States will be diag-
nosed with prostate cancer during their lifetimes.1 The disease is
the most frequently diagnosed type of male cancer and the sec-
ond leading cause of cancer-related death for men. In 2013, there
were an estimated 238,590 new cases of prostate cancer and 29,720
deaths from the disease in the United States.2
Prostate cancer is rarely diagnosed among men less than 40
years of age, but risk for the disease increases, especially begin-
ning at age 50. Almost two-thirds of prostate cancer cases are
diagnosed in men who are 65 years of age or older. Risk for being
diagnosed with and dying from prostate cancer is especially high
among African Americans as compared to whites. Studies to date
have not completely determined the reasons for this ethnic dis-
parity, but it is likely that the explanation is multifactorial. There
are also increased risks associated with having a family history
of prostate cancer.3 Hereditary risk for prostate cancer has been
defined as having three or more first-degree relatives (father,
brother, son), three successive generations of either the maternal
or paternal lineages, or at least two relatives affected at or before
age 55 years.4 A single first-degree relative with prostate cancer
carries a twofold higher risk of developing prostate cancer.5
Prostate cancer is most often detected using the prostate-specific
antigen (PSA) test and/or digital rectal examination (DRE).
Although other procedures have been advocated for use in screen-
ing (e.g., PSA velocity, PSA density, age-specific PSA range, and
free PSA), the combined use of PSA testing and DRE is the most
common screening strategy. The overwhelming majority of newly
diagnosed prostate cancer cases are found at an early stage, largely
due to increased prostate cancer screening in primary care.
Survival following treatment is high, with rates for localized pros-
tate cancer approaching 100%.2
CONTROVERSY AND CONSENSUS
The routine use of prostate cancer screening among men who are
50 or more years of age has come under increased scrutiny since
findings from two large randomized, controlled trials conducted
in the United States and Europe were reported in 2009. The trial
conducted in the United States found that prostate cancer screen-
ing did not save lives,6 while data from the European trial showed
that screening produced a modest reduction in mortality.7 Both
trials concluded, however, that mass screening with PSA resulted
in substantial over-diagnosis and, as a result, produced unneces-
sarily high diagnostic- and treatment-related morbidity. These
effects are due to the fact that the sensitivity and specificity of PSA
testing and DRE for prostate cancer are relatively low, even when
combined. In addition, it is not currently possible to determine
conclusively whether a given screen-detected prostate cancer is
indolent and may not present as a health problem, or if the lesion
is aggressive and lethal. Thus, some men with a screen-detected
prostate cancer will undergo biopsy procedures and invasive treat-
ment with surgery or radiation therapy for an indolent cancer that
may not have caused any health problems. Furthermore, screening
can lead to false negative results that may provide unwarranted
reassurance, or false positive results that may lead to unnecessary
diagnostic procedures, including having a prostate biopsy. As a
result, men who have an abnormal screening test result may need-
lessly experience anxiety, exposure to medical risks associated
with diagnostic evaluation procedures, and side effects of treat-
ment (e.g., bowel problems, incontinence, and impotence).8
In 2012, the US Preventive Services Task Force (USPSTF) took
the position that prostate cancer screening should not be recom-
mended routinely by providers. Rather, the USPSTF stated, The
decision to initiate or continue PSA screening should reflect an
explicit understanding of the possible benefits and harms and
respect the patients preferences. Physicians should not offer or
order PSA screening unless they are prepared to engage in shared
decision making that enables an informed choice by the patients.9
Current American Cancer Society guidelines related to prostate
cancer screening recommend, [s]tarting at age 50, men should
talk to a doctor about the pros and cons of testing so they can decide
if testing is the right choice for them. If they are African American
or have a father or brother who had prostate cancer before age 65,
men should have this talk with a doctor starting at age 45. If men
decide to be tested, they should have the PSA blood test with or
without a rectal exam. How often they are tested will depend on
their PSA level. Recently, the American College of Physicians rec-
ommended that providers offer men who are 50 to 69years of age
the opportunity to undergo shared decision-making about pros-
tate cancer screening.10 The American Urology Association rec-
ommends shared decision-making for men who are 55 to 69years
of age.11 Thus, while major health organizations do not agree on

whether prostate cancer screening should be offered in routine
care and to whom screening should be recommended, they all
agree that screening should take place only after men go through
a shared decision-making process.
Research conducted before current screening guidelines were
published indicated that most older adult men had undergone
prostate cancer screening at least once.12 Data from a recent
National Health Interview Survey, however, indicate that con-
temporary screening rates are declining,13 and vary according to
age, with higher rates reported for older men. Recently, Zaeliadt
et al.14 reported results of an administrative records review
conducted for 125,000 and 140,000 men served by the Veterans
Health Administration Pacific Northwest Network between 2004
and 2010. They found that prostate cancer screening rates had
decreased modestly, with a greater decline among men 75 or more
years of age. Recently, Aslani etal.12 reported on PSA screening
rates from January 2008 to December 2012 among men seen at
University Hospitals Case Medical Center and affiliated Hospitals
in Northeastern Ohio. The study found that screening decreased
significantly after the USPSTF guidelines were published. At this
time, however, the effects of new prostate cancer screening guide-
lines and shared decision-making on screening in primary care
are not yet known.
SCREENING PREDICTORS, DISPARITIES,
AND HIGH-RISK GROUPS
While most older adult American men are aware of prostate
cancer screening, many men do not know important facts about
prostate cancer screening that may influence decision-making
about screening use. As a result, most men have few worries and
concerns about having a prostate cancer-screening test.15 In a
recent worksite survey conducted with 812 men > 45 years of age,
Allen et al.16 found that detailed knowledge among respondents
was low, but interestingly, confidence in their capacity to make
an informed decision about screening was high. Thus, it appears
that men in the general population tend to view prostate cancer
screening uncritically, and may rely on healthcare providers to
guide them in decision-making about prostate cancer screening.
Men who are likely to report having had a prostate
cancer-screening test are older, white, or married; are nonsmok-
ers; and have a higher level of formal education. Men who have
had a screening examination are also likely to have a usual source
of medical care, to have insurance, to perceive their risk for pros-
tate cancer to be high, to view screening as a beneficial preventive
health procedure, and to believe that healthcare providers support
screening.1619
Race-related disparities in prostate cancer screening knowledge
and use have been reported in the literature. Regarding knowledge
about prostate cancer and screening, African American men are less
informed about prostate cancer screening and are less likely to have
screening than white men.20 Based on an analysis of Medicare claims
data, Etzioni etal.8 also found that African American men were also
less likely to have prostate cancer screening than white men. In a
more recent report, Gilligan etal.21 examined data for a random
sample of 69,968 anonymous Medicare beneficiaries 65years of age
and older, controlling for possible confounders. Results of multivari-
able analyses showed that African American men were half as likely
as white men to undergo prostate cancer screening.
Chapter10 prostate cancer screening 65
Unaffected men who have relatives diagnosed with prostate can-
cer constitute another group at increased risk. Astudy conducted
by Beebe-Dimer etal.22 involved 111 men, each of whom had one
or more brothers diagnosed with prostate cancer. Analyses of sur-
vey data showed that the majority of the men perceived their risk
for developing prostate cancer to be greater than or equal to 50%
and expressed heightened concern about being diagnosed with
the disease in the future. These findings are consistent with other
reports on the association between family history and perceived
risk for prostate cancer.23,24 Jacobsen and colleagues25 conducted
a study designed to assess the relationship between family his-
tory of prostate cancer, perceived vulnerability, and prostate can-
cer screening. This investigation involved 83 men with a positive
family history of prostate cancer and 83 men with a negative fam-
ily history of prostate cancer. The authors found that men with
a positive family history reported greater perceived vulnerabil-
ity to developing prostate cancer and had a stronger intention to
undergo screening.
In a study that focused attention on the impact of both race and
family history on screening, Bloom etal.18 interviewed 88 African
American men with a family history of prostate cancer and 120
men with no family history of the disease. Men who had a family
history were more likely than those who did not have a family his-
tory to report having had a recent PSA test. It is interesting to note,
however, that African American men with a family history did not
perceive themselves to be at greater risk for prostate cancer, and
did not report having greater worries about being diagnosed with
prostate cancer.
SCREENING FOR GENETIC RISK
Genome-wide association studies (GWAS) have identified chro-
mosomal regions and numerous germ line single nucleotide
polymorphisms (SNPs) that are associated with increased risk for
prostate cancer. Independently, each of these SNPs confers a mod-
est increased risk for being diagnosed with the disease. Findings
from gene expression array studies have identified somatic muta-
tions in prostate tumors. Racial differences in SNP associations
and gene expression in prostate cancer patients also have been
observed. 2628 Future studies in diverse populations may help
to identify gene expression patterns that are associated with
increased risk for developing prostate cancer, especially those
types of prostate cancer that may be more aggressive.29
Interest in cancer genetic risk assessment has been reported to
be high in the general population and among persons with a family
history. Most of these early studies have focused on genetic testing
for breast cancer risk. In a survey administered to 400 men in the
general population, Doukas, Localio, and Li30 found that 83% of
respondents reported that they were interested in genetic testing
for prostate cancer risk. Miesfeldt et al.31 surveyed 342 men who
were aged 50 or more and presented for prostate cancer screening
at a medical clinic on their interest in genetic testing, and found
that 89% of respondents stated that they would undergo such test-
ing. Myers et al.19 surveyed African American men aged 4070
to assess their interest in having a genetic test for the purpose of
determining their personal risk for developing prostate cancer in
the future. Of these men, 86% stated that they intended to undergo
genetic risk assessment if such testing becomes available. Studies
on screening for genetic risk among unaffected male relatives of
66 Section II screening for cancer in normal and at-risk populations
diagnosed prostate cancer patients have found similar results.
Bratt et al.32 asked 101 unaffected sons of men diagnosed with
prostate cancer about their interest in having a genetic testing for
disease risk. Over 90% stated that they would have such testing if
it were available. More recently, Harris et al.33 surveyed 370 unaf-
fected male relatives of prostate cancer patients and found that
only 47% thought that their risk for prostate cancer was greater
than average, and 56% were definitely interested in undergoing
genetic risk assessment. Interestingly, almost all survey respon-
dents were white and 87% had had a PSA test in the past five years.
This relatively low level of enthusiasm for genetic testing may be
associated with having had a normal PSA screening result.
DECISION SUPPORT AND SCREENING
The emergence of shared decision-making in clinical care has
been accompanied by the development of patient decision aids
(e.g., informational brochures, educational videotapes, interac-
tive videodiscs, and websites), as well as formatted print material
and decision boards.34,35 Such tools are now commonly referred
to as decision support interventions (DSIs). As mentioned ear-
lier, current prostate cancer screening guidelines uniformly rec-
ommend that healthcare providers make men aware of the pros
and cons associated with screening and engage them in shared
decision-making about prostate cancer screening. DSIs can help
to facilitate this process.
A number of randomized, controlled trials have evaluated the
impact of DSIs on patient prostate cancer screening knowledge,
anxiety, decisional conflict, intention, and use.36 DSI trials that
included knowledge about screening as an endpoint measure have
commonly reported an increase in patient knowledge as a result of
exposure to the intervention. Studies that measured intervention
effect on patient anxiety have found little effect. Similarly, DSIs
often have been reported to a nonsignificant effect on decisional
conflict related to screening, although several studies have found
that decisional conflict has decreased modestly in response to DSI
exposure. Studies have shown mixed effects of DSIs on intention
to undergo prostate cancer screening, with most studies showing a
reduction in intention to screen. Furthermore, most studies found
that DSIs have had little impact on actual screening use.
Historically, most trials of DSI use related to prostate cancer
screening have involved the use of DSIs that were designed to
accomplish the one-way delivery of information to patients. Such
DSIs included educational tools such as pamphlets, booklets,
non-interactive websites, and videos. More recent studies have
involved the use of DSIs designed not only to deliver informa-
tional content to patients, but also to engage patients and provid-
ers, or their agents, in an interactive activity. These tools include
workbooks that required patient input, computer- or Web-based
applications that call for patient response, and structured tele-
phone or in-person encounters.
Two studies have compared one-way versus interactive DSIs rel-
ative to their effect on patient knowledge about prostate cancer and
screening. One report, which included 313 men 5069years of age
who presented at a primary care practice for a scheduled appoint-
ment for non-acute care, tested the impact of a nurse-mediated
decision counseling session versus a mailed informational book-
let.37 Here, men exposed to the mediated DSI had significantly
more screening knowledge than those exposed to the mailed
booklet. Another study, which included 534 men in the commu-
nity who were 4070years of age, tested the impact of an informa-
tional booklet that included a values clarification exercise versus
a standard informational booklet.38 Men exposed to the booklet
that included the values clarification component had significantly
greater screening knowledge than men who received the standard
booklet. These data, while limited, suggest that interactive DSIs
are more effective than DSIs that simply deliver information as a
method to prepare men to make a shared decision about screening
with their healthcare provider.
FOLLOW-UP OF ABNORMAL
SCREENINGRESULTS
Many men who have an abnormal prostate cancer screening
result and receive a recommendation to have a prostate biopsy
do actually comply with that recommendation. In a study that
used National Health Interview Survey data from 2000, McFall
and Smith39 found that among 463 men who reported having an
abnormal PSA test result, 85% reported that they had undergone
some type of follow-up procedure(s). Studies based on medi-
cal records reviews have provided more definitive measures of
follow-up.
Nepple et al.40 conducted a study that involved 327 men who
were patients in the Veterans Health Administration system in the
Midwest and had an abnormal PSA test result due to screening,
symptoms, abnormal DRE results, and follow-up of testosterone
supplementation. Medical records review showed that in this well-
organized health system, 77% of the men had a urology consulta-
tion within 30 days. Chen et al.41 reported that among 96 men
served by a federally qualified urban community health center
organization who had an abnormal PSA test result, only 54% had
documentation of a urology consultation at 90 days. Elsewhere,
Turner et al.42 reviewed medical records for 724 men from 46 pri-
mary care practices who had an abnormal PSA test, and found
that two-thirds of the men had documentation of follow-up at 90
days. In another study, Krongrad et al.43 showed that out of 76
patients with an abnormal PSA and/or DRE, 57% actually under-
went a prostate biopsy.
In a study involving 413 asymptomatic African American
men,44 participants were asked to assume that they had under-
gone prostate cancer screening, were informed that they had an
abnormal screening result, and were advised by their physician to
have a prostate biopsy. In response to this scenario, 77% of par-
ticipants indicated that they would be likely to undergo a prostate
biopsy if it were recommended by their physician.
Several patient-level factors have been reported to be associated
with low rates of diagnostic follow-up after an abnormal prostate
cancer-screening result. These factors include being uninsured,
not knowing about the abnormal finding, having limited under-
standing about follow-up procedures, being worried about cancer,
being concerned about specific diagnostic procedures, and having
low social support.45
FUTURE DIRECTIONS
While prostate cancer can be detected through the use of PSA
testing and DRE, there are substantial concerns about the poten-
tial for untoward personal and public health consequences

associated with large-scale screening, which have fueled ongoing
debate about whether prostate cancer screening should be part of
routine care. It is too early to determine the full effect of these
forces on prostate cancer screening rates. However, early reports
suggest that prostate cancer screening in primary care has lev-
eled off, and may be declining, especially in older age groups. The
extent of this trend is not yet known, nor is it clear how screening
rates will be affected in subgroups at increased risk (e.g., African
Americans and men with a family history of prostate cancer) for
prostate cancer.
The screening controversy has had a dramatic impact on pros-
tate cancer screening guidelines, so that they now emphasize
the importance of shared decision-making prior to offering PSA
testing. This phenomenon has taken place in the midst of the
emergence of patient-centered healthcare and increased support
for research on methods to promote shared decision-making
in healthcare.46 Studies on decision support in prostate cancer
screening have shown that DSIs can be very effective in increas-
ing patient knowledge related to prostate cancer screening. It
is likely that these results reflect the impact of DSI informa-
tional content exposure in the context of low baseline knowl-
edge about prostate cancer and screening. DSIs have not been
reported to have such a consistent impact in terms of reducing
patient anxiety or decisional conflict related to screening, how-
ever. The limited impact of DSIs on these outcomes may indi-
cate that DSIs used in reported studies were not designed in an
optimal manner. DSIs that have effectively engaged patients and
their physicians in meaningful discussion of screening pros and
cons have boosted patient knowledge and have moderated self-
reported intention to screen. In some cases, screening use has
been reduced. These findings may suggest that the use of DSIs
can help men to take a more critical look at whether screening
makes sense for them and can set the stage for more effective
shared decision-making about this controversial preventive
health behavior.
A substantial amount of research is underway to identify molec-
ular diagnostic tools to identify men who are at increased risk for
developing prostate cancer and to determine if a diagnosed pros-
tate cancer is more or less aggressive.47 In the future, screening
guidelines may promote risk-stratified prostate cancer prevention
and screening strategies based on such testing. Currently, how-
ever, public enthusiasm for genetic risk assessment in prostate
cancer screening is likely to be moderated by healthcare provider
concerns about how to use the results of genetic testing ethically
and effectively in clinical care. Behavioral research is needed to
determine how to covey genetic risk assessment results to patients
effectively, how to develop effective methods for providing deci-
sion support to men and their significant others, and how to assess
the impact of molecular diagnostic testing results on the patients
psychosocial condition and behavior. It is also necessary to pre-
pare providers with competences and tools that enable them to
engage patients in shared decision-making in a manner that max-
imizes the likelihood of achieving important patient-centered
outcomes and that minimizes disparities.
Little research has been published on methods that could be
used to increase diagnostic follow-up in prostate cancer screen-
ing. Recently, Raich etal.48 reported on the results of a random-
ized, controlled trial designed to determine the impact of patient
navigation on the follow-up of 130 men with an abnormal PSA
Chapter10 prostate cancer screening 67
screening result, who received healthcare in public safety net
clinics. Findings from that study showed that 84% of men who
received navigation support, compared to 64% of the controls,
had complete diagnostic evaluation. Further research is needed
on the use of shared decision-making and patient navigation to
ensure complete diagnostic evaluation for patients with abnormal
screening test results.
New research is needed to identify effective theory-based meth-
ods for preparing men and their supportive others to clarify per-
sonal preferences related to screening, genetic testing for risk,
and the follow-up of abnormal screening test findings. It is also
critically important to develop approaches that enable patients to
play an active role in deciding whether to be tested for risk and
whether to be tested for prostate cancer. As research in this area
proceeds, particular attention should be paid to the development
of DSIs that meet the literacy and cultural sensitivity needs of men
at average and increased risk for prostate cancer and that can be
integrated into clinical practice.
ACKNOWLEDGMENTS
We would like to express our sincere appreciation to Leonard
Gomella, MD, and Jean Hoffman-Censits, MD, for their careful
reading and helpful comments on the content of this chapter.
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EPI-12-0513
 SECTION III

Screening and
Testing for Genetic
Susceptibility to Cancer

11 Psychosocial Issues in Genetic Testing 12 Psychosocial Issues in Genetic Testing

for Breast/Ovarian Cancer 71 forHereditary Colorectal Cancer 77
Mary Jane Esplen and Eveline M.A. Bleiker Andrea Farkas Patenaude and Susan K.Peterson
 CHAPTER 11
Psychosocial Issues in
Genetic Testing for
Breast/Ovarian Cancer
Mary Jane Esplen and Eveline M.A. Bleiker
BACKGROUND
Approximately 10% of all breast cancers are due to hereditary fac-
tors, with the majority caused by mutations in two breast cancer
genes, BRCA1 and BRCA2. The identification of the BRCA1 and
BRCA2 gene mutations in 1994 and 1995 resulted in new opportu-
nities for the provision of genetic counseling and testing to individ-
uals (with or without cancer) to identify those at increased cancer
risk. The average cumulative risks by age 70years for BRCA1 carri-
ers is estimated to be 60% for breast cancer, 59% for ovarian cancer,
and 83% for contralateral breast cancer.1 For BRCA2 carriers, the
corresponding risks are 55% for breast cancer, 16.5% for ovarian
cancer, and 62% for contralateral breast cancer.1 In BRCA2 carriers
an excess risk for prostate and pancreas cancer has been reported.2
Cancer susceptibility genes are autosomal dominant, with each
offspring of a gene carrier having a 50% chance of carrying the
same genetic mutation.1 The knowledge of being at high risk of
developing breast cancer offers opportunities for prevention.
However, a number of psychological and social challenges have
also been identified, which will be discussed in this chapter.
OUTLINE OF GENETIC COUNSELING
Since the identification of the BRCA1 and BRCA2 mutations,
there has been a steadily growing interest in genetic counseling
and testing among the general public, breast cancer patients, their
families, and physicians. In the United States, the recent require-
ment for accreditation by many national organizations to have
access to genetic counseling has increased the importance of
genetic counseling and testing within oncology practice.
Individuals with a personal or family history of breast or ovar-
ian cancer suggestive for a hereditary factor (i.e., multiple cases
of cancer in more than one generation, young age of onset, bilat-
eral breast cancer, breast and ovarian cancer, triple negative breast
tumor at young age) may be referred to specialty genetic clinics
to see a genetic counselor and/or geneticist. Genetic counsel-
ing is defined as the process of helping people understand and
adapt to the medical, psychological and familial implications of
genetic contributions to disease.3 Its aim is to educate patients
about their breast cancer risk, 3 and usually consists of two con-
sultations, at least one of which is performed before a genetic test.
These consultations are usually face to face with a trained genet-
ics professional. However, to meet the growing demand, alterna-
tive models of genetic service delivery (e.g., by telephone or group
counseling) are currently underway.4
OUTCOMES OF GENETIC TESTING
FORBREAST CANCER
The genetic test may result in a number of different outcomes:(1)a
counselee is a carrier of a known pathogenic BRCA1 or BRCA2
mutation (carrier); (2) a counselee is not a carrier of a patho-
genic BRCA1 or BRCA2 mutation known in his or her fam-
ily (non-carrier); (3) no known BRCA1 or BRCA2 mutation is
detected in the family or the counselee, despite a strong family
history of breast/ovarian cancer (inconclusive result); or (4) an
unclassified variant/variant-of-uncertain clinical significance
(UV) is found, suggesting that the contribution of this BRCA1 or
BRCA2 variant to cancer risk remains largely undefined. Proven
carriers of a BRCA1 or BRCA2 mutation have a strong increased
risk to develop (a second) breast and ovarian cancer, and periodic
surveillance (mammography and/or breast MRI) or preventive
mastectomy and/or oophorectomy are recommended.5 Women
who are proven to be non-carriers have no increased risk to
develop breast or ovarian cancer and are advised to participate
in the population-based breast cancer screening. The majority of
women undergoing genetic testing receive an inconclusive test
result. Although evidence-based guidelines are lacking for this
group, routine screening options are recommended, but preven-
tive surgery also may be considered.
TREATMENT-FOCUSED GENETIC TESTING
Breast cancer patients at increased genetic risk are usually offered
genetic counseling and testing after the completion of their primary
treatment. More recently, genetic testing has been provided through
72 Section III screening and testing for genetic susceptibility to cancer
rapid genetic testing in the time period before their primary sur-
gery.6 This process allows women to receive information on their
carrier status before or just after their breast cancer diagnosis so
that they can incorporate this knowledge into decisions on primary
treatment. These women may, for example, opt for an immediate
contralateral prophylactic mastectomy to prevent breast cancer
in the unaffected breast. For the affected breast, they may opt for
mastectomy instead of lumpectomy. Initially, concerns were raised
about the possibility that providing genetic testing at the time of
diagnosis could be psychologically harmful, resulting in both an
informational and emotional overload at a stressful time.7 However,
a recent study showed that, despite the additional distress burden,
73% percent of patients who received the results of genetic testing
before surgery recommended genetic testing to other high-risk
breast cancer patients, and 88% believed that the best timing of
genetic testing was between breast cancer diagnosis and surgery.8
THE POSSIBLE BURDEN OF INTENSE
SURVEILLANCE AND PROPHYLACTIC
SURGERY
Identifying people at risk for breast cancer allows for targeted
surveillance programs or risk-reducing interventions, including
risk-reducing mastectomy and risk-reducing oophorectomy. While
prophylactic surgeries offer the best chance for reduced risk, they
involve challenging medical decision-making, and such surgeries will
impact aspects of quality of life, such as body image and sexuality.
Breast Cancer Surveillance
Carriers of a BRCA1 or BRCA2 mutation, as well as women who
received an inconclusive genetic test result or an unclassified vari-
ant, are all offered a more or less intensive surveillance program,
including a mammogram (and MRI), breast self-examination,
and a clinical breast examination by a physician. In two reviews
on studies including women with a family history of breast cancer
undergoing mammographic screening of women, normal levels of
distress and even better general health as compared to the general
population were found.9,10
Prophylactic Mastectomy
By having a risk-reducing mastectomy, a woman lowers her risk
by about 90%. Furthermore, female breast cancer patients who
carry a BRCA1 or BRCA2 gene mutation have an increased risk of
20%55% of developing a second primary breast cancer,11 as well
as an increased risk of ovarian cancer. Contralateral (immediate
or delayed) prophylactic mastectomy (CPM) has been reported to
lead to a reduction of up to 95% in the risk of contralateral breast
cancer. However, there is still some debate on the effect on both
overall and breast cancer specific survival.12
Studies on the long-term satisfaction and psychosocial impact
of risk-reducing surgery in breast cancer patients, or women
at increased risk, with a positive family history of the disease
reported overall high levels of satisfaction,13 favorable effects on
emotional stability and stress,14 and lower levels of breast cancer
concerns than women who had not had prophylactic mastec-
tomy.13,15 Negative effects reported were a compromised body
appearance and a reduced sense of femininity.15 Also, in newly
diagnosed breast cancer patients who opted for contralateral pro-
phylactic mastectomy, no differences were found in the first year
after surgery in quality of life and distress, as compared to women
who opted for breast conservation or unilateral mastectomy for
the affected breast only.14,15,16 Despite the negative impact of con-
tralateral mastectomy, such as an adverse impact on body appear-
ance, sense of femininity, sexual relationships, and unanticipated
re-operations due to complications with reconstruction, the large
majority (83%) were (very) satisfied with their decision to undergo
prophylactic contralateral mastectomy.
Ovarian Cancer Surveillance or
ProphylacticOophorectomy
Until recently, ovarian cancer screening was recommended as one
of the preventive options for women at increased risk, involving
four-monthly CA 125 tests and annual ultrasound. Although final
results of large trials are yet to be reported, initial study results
suggest that gynecological screening has not led to decreased ovar-
ian cancer mortality. 17 Therefore, screening for ovarian cancer
in asymptomatic women is no longer a standardized recommen-
dation. For women with a BRCA1 or BRCA2 mutation, currently
risk-reducing oophorectomy is recommended, which is believed
to reduce the risk of ovarian cancer by 80%96%.18 In addition,
an oophorectomy contributes to a reduced breast cancer risk by
50% when performed prior to menopause. Brain etal.19 found that
frequent ovarian screening did not cause sustained psychological
harm. Madalinska etal.20 found that women opting for surveil-
lance reported more cancer worries, a higher perceived cancer
risk, but better body image, and better endocrine and sexual func-
tioning, as compared to the women who had opted for prophylac-
tic surgery of the ovaries. These results suggest that the favorable
effects of prophylactic oophorectomy in terms of reduced cancer
worries and low perceived cancer risk need to be weighed against
the increase in endocrine and sexual symptoms.
PSYCHOSOCIAL ISSUES ENCOUNTERED
BY INDIVIDUALS UNDERGOING GENETIC
COUNSELING AND TESTING
While it is generally recognized that many individuals will benefit
from genetic counseling and testing for breast cancer, there also
have been reports that genetic testing may induce serious psycho-
social problems.
Testing Positive for a Genetic Mutation
Reviews and a meta-analysis indicate that the majority of counselees
do not exhibit heightened or clinically relevant levels of depres-
sion, anxiety, and/or distress as assessed by standardized question-
naires with established score thresholds for clinical relevance.2123
However, depending on the type and timing of the assessment,
approximately 25% of counselees are likely to have high levels of
psychological morbidity that merit psychosocial interventions.21,23
RISK FACTORS FOR INCREASED
PSYCHOSOCIAL DISTRESS
A listing of risk factors for increased emotional distress appears in
Box 11.1. The best predictor of post-genetic-testing distress is the
pre-test emotional state or pre-test distress level.2123 The expe-
rience of parental cancer in childhood is among the risk factors
for high distress, 24 and women who have lost their mothers to

Box 11.1 Factors Associated With Psychological Risk
orAdjustment Difficulties
Sociodemographic
Younger age
Socioeconomic status
Having children
Cancer- and symptom-related
Recent diagnosis
Recent history of breast symptoms
Past experience of cancer and its impacts on the family
Psychosocial
Increased risk perception
Appraisal of high relevance and threat
Loss of close relative to cancer (especially loss of mother at
young age)
Caregiving of family member with cancer
Prior history of additional life losses/trauma
Premorbid psychological history/condition
Current level of psychological functioning (e.g., presence
of depression, anxiety, disease-specific worry)
Low self-steem
Feelings of stigma
Expectation of receiving a negative test result
Coping style (e.g., avoidant coping, anxious preoccupied,
health monitoring)
Low level of social support
Family
Low level of family cohesion
Anticipated or actual changes in relationships as a result of
testing
Anxious partner
Frequent concern for children; guilt of passing on mutation
cancer have reported more cancer-specific distress.25 Individuals
who have cared for and/or lost a parent during adolescence may
be more vulnerable to psychological distress and may request
additional psychosocial support during the genetic counseling
process.26,27 Related risk factors for psychosocial problems are the
recent loss of a close relative to cancer, and the recent diagnosis of
cancer in the counselee.23,26 Counselees who encounter problems
in contacting or communicating with their family members may
also be at risk for psychosocial problems.28 Recognition and sup-
port of the counselee who is the family messenger and who is
the first utilizer of predictive testing and preventive surgery in
the family is important, especially when this counselee has the
feeling that he or she must provide a good example for the rest
of the family. Furthermore, special caution is needed in those
families in which clear expectations exist about (non)carriership.
If the test outcome differs from what is anticipated, families often
have more difficulty adapting.26,27 Finally, psychosocial support
is frequently needed by those who have to decide about undergo-
ing risk-reducing surgery. Pre- as well as post-surgery support can
help individuals in making a well-balanced decision about under-
going surgery, can facilitate the adaptation to the operation, and
can prevent feelings of regret.29
Chapter 11 genetic testing for breast/ovarian cancer 73
IDENTIFICATION OF PSYCHOSOCIAL
PROBLEMS
To identify those at increased psychosocial risk, brief screening
instruments have been developed for the genetics context. One
instrument, the Genetic Psychosocial Risk Instrument (GPRI),
aims at identifying individuals at risk for psychological dis-
tress such as depression or anxiety.26 Another brief instrument,
the Psychosocial Aspects of Hereditary Cancer (PAHC) ques-
tionnaire, aims at identifying individuals experiencing current
psychosocial problems. 27 Additional instruments include the
Psychological Adaptation to Genetic Information Scale (PAGIS),30
the Multidimensional Impact of Cancer Risk Assessment
(MICRA), 31 and the Genetic Risk Assessment Coping Evaluation
(GRACE).32 The PAGIS and the MICRA were both developed to
assess the psychological impact and adaptation to genetic test
results (and thus are administered after the genetic counseling
process is completed).
Receiving a Negative Test Result
Some individuals will receive good newsthat they do not carry a
genetic mutation. This news generally is associated with relief and
reductions in general anxiety and breast cancer anxiety. However,
it should be noted that for some, testing negatively can result sur-
prisingly in feelings around having to adjust to a new sense of their
personal risk. For example, most individuals with a strong family
history of cancer have integrated a sense of being at increased risk
to cancer and can feel a strong identification with the relative(s)
affected by the disease. A negative test is unexpected, and individ-
uals have the task of integrating this new information into their
sense of self. This task is challenged by a feeling that one is giving
up a sense of belonging to a group, and it can be experienced as
a distressing separation from loved ones. Other feelings that can
emerge for those testing negative include feelings of guilt about
being spared the legacy of the familial disease, a response that is
consistent with survivor guilt.28
Inconclusive Test Results
Even if an individual receives an inconclusive result, it is still
possible for the individual to carry a gene mutation that is rare or
not yet found through sequencing. Such a result causes concern
to clinicians who fear that the individual is falsely reassured. The
individuals comprehension of an inconclusive test result must
be examined during follow-up, particularly in relation to adher-
ence with surveillance and preventive options.33,34 There is some
evidence that those who receive inconclusive results experienced
higher levels of distress compared to carriers and non-carriers, 33
suggesting a need for follow-up or ongoing assessment concern-
ing both comprehension of and coping with uncertainty around
cancer risk.
FAMILY COMMUNICATION ISSUES
Individuals can be burdened with trying to find ways to notify
close family members or a cousin they may have never met or
who does not live close by, and they may have concerns of causing
emotional upset. 35 In addition, individuals with genetic knowl-
edge may also feel a strong pressure to encourage family members
to be tested, even when these individuals may not be interested,
74 Section III screening and testing for genetic susceptibility to cancer
precipitating conflict. Women with BRCA1 or BRCA2 gene muta-
tion find it particularly challenging to inform their daughters of a
mutation. The mothers, on one hand, may express wishes to make
sure their adult daughters are enrolled in the appropriate surveil-
lance programs that would be recommended following a genetic
test; on the other hand, they may feel a strong need to protect them
from the potential worry and psychological burden. 36 Parents
with younger children have the challenge of explaining absences
or changes due to medical appointments or procedures, and must
find a way to communicate information, while reinforcing a cur-
rent state of good health.
Family communication challenges can be addressed through
guidance from healthcare professionals. Some clinics, for
example, provide templates of letters that can offer a first step
in communicating genetic information for further follow-up,
including genetic clinic locations within their geographic areas.
Interventions to facilitate family communication that provide
guidance in sharing sensitive information are also helpful. 35 How
individuals perceive a relatives opinion of genetic testing or sense
of control in sharing the information can influence whether or not
individuals share genetic information.35 And, individuals with
higher depressive symptoms or inconclusive results may be less
likely to disclose genetic test results, 35 suggesting the potential of
targeted psychosocial supports to address specific barriers to dis-
semination of genetic test results.
BRCA1 AND BRCA2 CARRIERS AND
ASSISTED REPRODUCTION
Individuals carrying a BRCA1 or BRCA2 mutation are frequently
concerned about the transmission of their predisposition of can-
cer to their children.37 The possibility of transmitting a mutation
to a child may pose such a concern to some couples that they avoid
childbearing. 38 Healthcare professionals, including geneticists
and psychosocial workers, will be increasingly involved in discus-
sions and decisional counseling regarding reproductive options
in families with a known BRCA1 or BRCA2 mutation. In recent
decades, genetic testing for hereditary cancers before birth has
become available through prenatal diagnosis (PND) and preim-
plantation genetic diagnosis (PGD). PND is performed during
early pregnancy (1020 weeks). If the fetus is found to be a BRCA1
or BRCA2 carrier, the pregnancy can be terminated. PGD, also
called embryo selection, is a technique that involves in vitro fer-
tilization (IVF) with a biopsy at the six- to eight-cell stage of the
embryo, three days after insemination. Only non-carrier embryos
are transferred to the uterus. PND and PGD have first been applied
to prevention of births of children with cancer predisposition syn-
dromes that have early ages of onset. More recently, PGD has been
advocated for consideration by members of families affected by
adult-onset, high-risk cancer predisposition syndromes, such as
hereditary breast/ovarian cancer.39 PGD has been used to avoid
the potential risk of a miscarriage and decisions about pregnancy
termination, both associated with PND.39 Potential reasons for not
utilizing PGD include psychological, practical, and ethical con-
siderations. A major factor is lack of awareness about applicable
reproductive technologies. For example, in studies of acceptance
of PGD among hereditary cancer family members, 50%60% of
those surveyed had not heard of PGD until the survey.41 Cost,
restriction of services to major medical centers, lack of contact
with reproductive specialists, and hesitancy among oncologists to
bring up PGD as an option have been discussed as other limiting
factors.39,40,41 Another potential factor is the negative judgment
that such a step may imply about the value of a life lived with a
cancer-predisposing hereditary syndrome. Personal and familial
cancer experience may also influence such decisions. The use of
decision aids and/or decisional counseling can be helpful in assist-
ing individuals to make a balanced decision.
PSYCHOLOGICAL APPROACHES
THATSUPPORT GENETIC TESTING
ANDITSIMPACTS
Several psychosocial interventions to facilitate adaptation and
comprehension of genetic information have been proposed for
BRCA1 and BRCA2, but to date few have been rigorously evaluated.
Studies thus far have focused on psychoeducational approaches,
added counseling sessions with an educator or psychologist, or
decisional aids (DA) counseling to facilitate decision-making con-
cerning risk management options, with the research of other psy-
chotherapeutic approaches still at an early stage.
Decisional aids (DA) either to support decisions to undergo
genetic testing,42 or to undergo risk-reducing surgery versus sur-
veillance, 29,43 demonstrate benefit in reducing decisional conflict,
facilitating adjustment, and improving patient satisfaction.29,43
For example, a tailored computerized decision aid (tailored to
age, menopausal status, breast cancer history) was found in a ran-
domized controlled trial to be effective among carriers who were
initially undecided about how to manage their breast cancer risk,
facilitating decision-making, decreasing decisional conflict, and
increasing satisfaction.29 Reductions in decisional conflict, clari-
fication of personal values and preferences, and improvements in
satisfaction have been found for similar decisional aids (web-based
or paper-based) in pilot studies.43
Psychoeducation or added psychosocial support, provided
either in one-on-one sessions or via telephone, has demonstrated
benefit.44 For example, five weekly telephone sessions of psychoso-
cial support following standardized genetic counseling for BRCA1
or BRCA2 reduced cancer-related distress, anxiety, and depressive
symptoms in the short term.44 While no differences were observed
at one year, the authors suggested that the alleviation of distress in
the short term is especially important, given that it is the likely
period during which important decisions are being made around
risk-management options.
For individuals with higher levels of cancer worry or with
communication challenges that interrupt sleep or interfere with
optimal coping and decision-making, it is recommended to
include additional follow-ups with a genetic counselor or men-
tal health professional. Aform of enhanced genetic counseling
guided by the Cognitive-Social Health Information Processing
(C-SHIP) model45 added a session with a health educator who
used the contemplation of possible testing scenarios to elicit rel-
evant cognitive affective reactions to assist women to prepare
and plan for the employment of specific coping strategies to
manage potential reactions. Women who received the enhanced
counseling demonstrated greater knowledge compared to con-
trols post-intervention, with the authors recommending the
use of specific techniques that help to activate an individuals
cognitive-affective processing system.45

Behavioral interventions, such as relaxation, mindfulness-based
stress reduction, or distraction techniques can assist in addressing
anxiety and the lifelong stress associated with repeated medical
and screening appointments. Cognitively oriented strategies used
routinely in cognitive behavioral therapy (CBT) to manage anxi-
ety or to facilitate medical decision-making are helpful and can
be employed through individual or group formats. Exercises, such
as thought records, assist individuals in gaining insight on spe-
cific self-beliefs, catastrophic thinking, or rigid thoughts, and
in learning about the connections among their thoughts, moods,
and behaviors Acounselor can help to identify inaccurate cog-
nitions and to encourage more realistic interpretations of their
circumstances.
Other therapeutic approaches, such as psychodynamic thera-
pies, may be suitable but have not been tested. Psychodynamic
therapies emphasize emotions more than cognition and utilize
the alliance between the therapist and the individual as a means
of understanding the individual and creating change. Insight is
gained by appreciating how early life experience, such as previous
relationships and bereavements (particularly those related to can-
cer in the family), relate to current distress or impact on medical
decision-making. Wellisch and colleagues25 have highlighted the
unique issues that are highly relevant in young women who lost
a mother to cancer, particularly during their adolescence. These
women can develop a sense that it is inevitable that they will suffer
and die from cancer, just as their mothers did. This self-belief can
be explored and eventually challenged through the gained under-
standing of how they evolved, within the safety of the therapeutic
relationship.
SUPPORT GROUPS
While mostly at the pilot study phase, evidence suggests that
the use of professionally led group support that incorporates
the opportunity for ongoing connections with the genetic
clinic and a peer group 46,47 can effectively augment genetic
counseling. Groups have shown improvements by decreas-
ing cancer worry or general anxiety, or by improving coping
strategies.46,47
The principles of supportive-expressive group therapy
(SEGT)47 have also been applied to the genetic counseling con-
text.46 The SEGT model for cancer risk populations has the goal
of using the existential impact of the risk/genetic situation as an
opportunity to explore its relevance in relation to perceptions
of cancer risk; through the here and now of the group expe-
rience, this model encourages individuals to live authentically
and fully.46 Sessions focus on explorations of past familial expe-
riences of cancer and their influence on current risk process-
ing and viewpoints, as well as their impact on current medical
decision-making and adjustment. By providing an opportunity
for emotional expression within a safe culture of sharing, trust,
and mutual understanding, the model creates a forum for the
processing of unresolved grief or the exploration of adjustment
challenges. Role modeling and the vicarious learning that occurs
through the sharing of various perspectives and coping strate-
gies are helpful in facilitating coping. Akey emphasis is on the
legitimacy of a full range of emotion and the centrality of rela-
tionships in giving value to life and is taken from existential
psychotherapy.46,47
Chapter 11 genetic testing for breast/ovarian cancer 75
SUMMARY
In summary, information around BRCA1 and BRCA2 testing has
the potential to provide many benefits. However, genetic infor-
mation can also pose challenges to individuals and their families
that can result in emotional distress or decisional conflict around
preventive options. Psychosocial, emotional, personal historical,
cultural, and family contextual factors play an important role in
how an individual adapts to and utilizes genetic information. The
identification of individuals who may be at risk for adverse psy-
chological and behavioral reactions can occur through the use of
validated screening instruments designed for the cancer genetics
field in order to employ tailored interventions known to facili-
tate accurate knowledge and adjustment. The field continues to
evolve, with a number of ongoing studies of interventions aiming
to address potential psychosocial impacts, family communication
challenges, and risk management decision-making, in an effort to
preserve quality of life. During the coming years, we will be faced
with a number of challenges, such as the implementation of screen-
ing questionnaires for psychosocial issues as part of good clinical
practice; the trend to offer fewer counseling sessions, but still pro-
vide good personalized care; the availability of genetic test results
of single nucleotide polymorphisms (SNPs) related to breast cancer
risk using panel testing, and the communication of these modestly
increased risk gene variants; and forgotten groups, such as vari-
ous cultural minorities, who have only sparsely requested genetic
counseling for cancer. Finally, in this evolving field of genetics, it
is of great importance that psychosocial researchers and clinical
workers such as psychologists and social workers become closely
involved in genetic developments to ensure the best quality of care
for this unique group of high-risk individuals and families.
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 CHAPTER 12
Psychosocial Issues in Genetic
Testing for Hereditary
Colorectal Cancer
Andrea Farkas Patenaude and Susan K.Peterson
INTRODUCTION
Genetic testing for hereditary colorectal cancer (CRC) syndromes
is increasingly used in clinical practice to ascertain inherited dis-
ease susceptibility or genetic etiology. Aprimary benefit of genetic
testing is the resulting ability to offer targeted options for cancer
risk reduction and risk management to people at increased hered-
itary cancer risk. Psychosocial research on hereditary CRC has
focused on understanding individuals motivations and decisions
regarding genetic testing, the psychological impact of genetic risk
notification, the effects on family and interpersonal relationships,
and factors influencing the uptake of risk-reduction options (e.g.,
screening, risk-reducing surgery, or chemoprevention). We review
the literature on the impact of genetic counseling and testing on
individuals at risk for two common hereditary CRC syndromes,
Lynch syndrome (LS; also referred to as hereditary nonpolypo-
sis colon cancer, or HNPCC) and familial adenomatous polyposis
(FAP). Findings from these studies can guide clinicians in under-
standing why people seek genetic counseling and testing, how
they cope with the results of testing, and how they subsequently
integrate that information into cancer prevention and treatment
decisions.
LYNCH SYNDROME
Medical Implications for Mutation Carriers
It is estimated that 2%4% of all CRCs are due to germline muta-
tions associated with LS, a hereditary CRC condition.1,2 LS is an
autosomal dominant condition most commonly characterized
by predisposition to colorectal and endometrial cancers, with
increased lifetime risks for ovarian, stomach, small bowel, hepato-
biliary tract, pancreatic, urinary tract, brain, and skin cancers.2,3
Deleterious germline mutations in several genes (including MLH1,
MSH2, MSH6, PMS2, and EPCAM) are responsible for inherited
susceptibility to LS. Identification of a familial mutation allows
for targeted risk-reduction strategies in mutation carriers and for
notification of risk to relatives who may also be carriers. Children
of carriers have a 50% risk of carrying a deleterious mutation.
Generally, genetic testing for hereditary cancer syndromes is most
informative when testing is initiated in a family member with
a syndrome-specific cancer. 3 Genetic testing for LS optimally
begins with preliminary microsatellite instability testing of an
LS-associated CRC or endometrial cancer tumor from a patient
whose clinical characteristics and/or family cancer history are
consistent with LS. High levels of microsatellite instability (MSI)
are associated with, but not diagnostic of, LS.1 Suggestive family
history, clinical characteristics, and high MSI levels increase the
likelihood that a deleterious mutation will be identified through
genetic testing. Universal screening of colorectal and endometrial
tumors through MSI or immunohistochemical (IHC) testing,
regardless of patients family history, has been recommended to
comprehensively identify persons at risk of LS.3,4 Patients whose
tumors show abnormal MSI or IHC results through universal
screening should be referred for genetic counseling and testing.
Lifetime CRC risk in LS is substantially higher compared to
the general population and varies by both gene mutation and
gender, with some lifetime risk estimates approaching 68%. 5 LS
is typically characterized by an earlier age of CRC onset in LS.
Because the majority of LS-related CRCs occur in the ascend-
ing colon, colonoscopy is the preferred screening modality and
should be initiated at much earlier ages compared to general
population screening guidelines. LS also confers a substan-
tially higher lifetime risk for endometrial cancer, which affects
at least one female member in about half of all LS families.6
Endometrial cancer risk estimates also vary depending on the
specific mutation identified, and lifetime risk has been esti-
mated up to 71% in some mutation carriers.7 Women with LS
also are at an estimated 10%12% lifetime risk of developing
ovarian cancer. 8 Evidence supports the efficacy of prophylactic
hysterectomy and bilateral salpingo oophorectomy for reducing
gynecologic cancer risk in LS,9 and women are advised to con-
sider risk-reducing surgery after completion of childbearing. 3
Although there is scant evidence that endometrial or ovarian
cancer screening is beneficial for women with LS, consensus
statements have recommended annual endometrial biopsy and
transvaginal ultrasound for possible detection of endometrial
78 Section III screening and testing for genetic susceptibility to cancer

Table12.1 Colorectal and Gynecologic Cancer Risk Management suggestive of LS. Universal tumor screening is increasingly
Recommendations for Lynch Syndrome being adopted as a means to identify newly diagnosed patients
who may have a LS-related mutation; however, few studies have
Colorectal Cancer examined the uptake of genetic testing after universal tumor test-
ing. Astudy of population-based LS tumor screening reported a
Intervention Recommendation
45% initial uptake of genetic testing among persons with a high
Screening a priori likelihood of having a mutation.12 In the clinical set-
Colonoscopy Annual or biennial beginning between ages ting, more active follow-up, which facilitates referral to genetic
2025years or 10years younger than the counseling for patients with abnormal tumor screening results,
youngest age at diagnosis in the family, may improve completion of genetic testing.13 However, certain
whichever comes first. Age at screening subgroups of patients may be less likely to follow through with
initiation also may be determined by the genetic testing after receiving genetic counseling for abnormal
specific mutation identified in the family. tumor screening results, including younger patients and those
History and examination with Annual beginning at age 21 with lower incomes.14 This is particularly concerning since
detailed review of systems, CRC patients diagnosed at younger ages present acutely at more
education, and counseling advanced stages than is typical for older patients.15 A further
regarding LS barrier that needs to be overcome for optimal care of patients
at risk for hereditary colorectal cancer is the taking of complete
Gynecologic Cancer
cancer family histories. A2014 study of 212 medical practices
Intervention Recommendation with 10,466 patients found that first-degree relative family his-
tories were recorded for 77% of patients and second-degree
Screening
family histories for 61.5% of patients, with significantly better
Endometrial biopsy, Annual beginning at 3035years of age documentation for breast cancer patients than for patients with
transvaginal ultrasound coloncancer.16
History and examination with Annual beginning at age 21
Motivation
detailed review of systems,
education, and counseling Factors positively affecting uptake of genetic testing for LS
regarding LS include having a personal history of cancer, having more rela-
tives with LS-related cancers, higher perceived risk of colorectal
Prophylactic Surgery
and related cancers, stronger beliefs that hereditary CRC would
Hysterectomy or Discuss as option after childbearing is influence ones life and that of ones offspring and more intru-
oophorectomy complete. sive thoughts about CRC.17 Uptake of genetic testing did not dif-
Adapted from National Comprehensive Cancer Network. Genetic/Familial High Risk fer by gender, but higher educational level, having a spouse or
Assessment:Colorectal. Version 1.2014. http://www.NCCN.org. Accessed February partner, and being employed correlated positively with uptake.
27, 2014; Lindor NM, Petersen GM, Hadley DW etal. Recommendations for the Both men and women appear motivated to seek testing to deter-
care of individuals with an inherited predisposition to Lynch Syndrome. JAMA.
2006;296:15071517.
mine whether offspring are at increased cancer risk. Women may
be more likely than men to want testing to determine whether
they require enhanced cancer screening and to undergo test-
and ovarian cancer. 3,10 CRC and gynecologic cancer risk man- ing as a response to recommendations of a physician or genetic
agement recommendations for LS are described in Table 12.1. counselor.18 Decliners of genetic testing for LS were more likely
Evidence does not support screening for other LS-associated to report depressive symptoms, to be non-adherent to colorec-
cancers, although screening for gastrointestinal cancers other tal screening recommendations, to have less confidence that
than CRC, as well as annual urinalysis, may be considered in they could cope with a positive test result, to be concerned about
selected families. 3 insurability, and to worry about the emotional impact of genetic
testing on self and family.17
Psychosocial Issues Risk Perception
Uptake Decision-making for genetic testing assumes an accurate under-
The extent to which genetic testing is embraced by individuals standing of the admittedly complex risks that are involved.
at risk for hereditary CRC is critical. It is only through genetic However, studies indicate that while accuracy of risk percep-
testing that those members of high-risk families who carry tion regarding LS-associated cancers among at-risk individuals
cancer-predisposing mutations, who are truly at increased heredi- increases following genetic counseling, even counseled individu-
tary risk for colorectal and associated cancers, can be distin- als often do not accurately report their cancer risks.19 Inaccurate
guished from those who do not carry familial mutations, who are cancer risk perceptions among individuals undergoing genetic
only at general population risk. Reported uptake of genetic testing counseling for LS encompass both over- and underestimation of
for LS varies from 14% to 75% across studies,11 reflecting possible risk, with only one-third to one-half of participants in one study
cultural and sample selection biases. accurately reporting the levels of risk conveyed in the genetic
Studies reporting uptake of genetic testing for LS have largely counseling they attended. 20 Understanding risk perception for
focused on individuals and families who were selected for LS is complicated by the fact that there are multiple cancer risks
potential risk based on family history or clinical characteristics toconsider.
 chapter 12
Decision Aid for Lynch Syndrome Genetic Counseling
andTesting
Given the complexity of the decision to undergo genetic testing,
researchers have begun to test innovative strategies to facilitate
education and decision-making about inherited cancer risk and
genetic testing. These include telegenetic delivery of genetic coun-
seling via the Internet 21 to reduce problems of limited access to
genetic services and the development of disease-specific decision
aids to enhance the counseling experience.22 Decision-making
about genetic testing for LS is a multistep process, and decision
aids may be particularly useful in this context.
Distress
Genetic counseling is highly recommended before genetic testing
for LS and has been shown to reduce the distress of affected and
unaffected at-risk individuals.23 Research suggests that individu-
als who have received test results for LS-related mutations expe-
rienced immediate increased general distress, 24 cancer-specific
distress,25 and worry about cancer,24 but that the mean increases
did not raise scores above normal levels. Generally, distress
receded over the first year following genetic testing23,24 and was
at pretest levels by 12months.25 One study three years after dis-
closure of test results showed scores similar to those before genetic
testing, except that non-carriers cancer-specific distress was sig-
nificantly lower than baseline scores.26
Research has shown, however, that there are subgroups of
tested individuals at greater than average risk of psychological
distress following testing. Women, younger people, non-whites,
and individuals with less satisfactory social support and lower
educational levels had higher levels of general and cancer-specific
distress, regardless of mutation status in the 12months follow-
ing testing.24 Other studies have reported that individuals with
a prior history of major or minor depression or those with more
affected first-degree relatives or those reporting more intense
grief reactions had greater distress one to six months after disclo-
sure.27,28 Arecent study showed that reductions in distress over
the first six months following disclosure for LS genetic testing
was moderated by the individuals health information coping
style. Generally, individuals testing negative experienced relief
and decreased distress, which was long-lasting.24 Such individu-
als are advised that they no longer require enhanced screening
and can return to following general population guidelines for
colonoscopy screening. It has been found, however, that some
at-risk individuals testing negative for LS-related mutations evi-
dence distrust of the test result to the extent that they do not give
up colorectal screening, 29 although this has not been found in all
studies.19
Cancer Screening
An important determinant of the success of genetic counseling and
testing is the degree to which at-risk individuals who are found to
be mutation carriers alter their prevention behaviors. Among car-
riers, compliance with screening recommendations assessed from
six months to seven years after genetic testing showed increases.17
Discussion with physicians about mutation status were associated
with extracolonic screening. 2 Screening adherence in carriers
may be enhanced by the reported increase in commitment and
self-efficacy regarding colonoscopy, as well as greater perceived
benefits and fewer perceived barriers of screening.30
genetic testing for hereditary colorectal cancer 79
The burden and challenge of LS can be significantly reduced by
finding knowledgeable providers who clearly and empathetically
describe the complex, ongoing needs for screening and the results
of screening tests. Healthcare providers may not accurately or
completely convey high-risk screening recommendations to per-
sons at risk for LS. System barriers include difficulty navigating
visits to numerous specialists, who are often in different hospital
systems and often have differing expectations for the type and fre-
quency of screening tests needed. These problems highlight the
need for coordinated, multidisciplinary care by specialists famil-
iar with hereditary cancer.
Family Communication
Communication among family members about the presence
of a deleterious mutation for hereditary CRC is important to
accomplish one of the aims of cancer genetic testing:the early
identification of family members, especially unaffected family
members, who are at high risk of carrying the deleterious muta-
tion. It has been the decision of most professional medical and
ethical groups that such communication should be the province
of the relatives who have been tested, or their surrogates, 31 to
protect the privacy of tested family members. It has been recog-
nized, however, that there are barriers to such communication,
which could mean that some family members are not informed
in a timely way about the options for genetic testing or targeted
screening. 32
Several quantitative and qualitative studies address attitudes
in high-risk LS families regarding how information about famil-
ial disease should be conveyed to family members. Studies show
that family members highly value the dissemination of infor-
mation and believe it is their duty to tell at-risk relatives about a
hereditary mutation.33 Being informed by a proband is a power-
ful incentive to undergo genetic counseling and testing, though
not all individuals so informed sought these services. Family
members in another study believed that if parents of at-risk indi-
viduals failed to discuss the hereditary risks with their children,
other relatives should intervene to provide that information. 34
Sharing of information decreased with distance from the nuclear
family.34 The presence of a fatal case of CRC within the family
and encouragement from professionals spurred communication.
Disrupted or suboptimal family relationships or initial difficulty
in contacting or speaking with relatives markedly hindered the
sharing of information about hereditary risk. 35 Information shar-
ing in some families took years. In a study of 248 parents with LS
with children, 83% had shared their genetic information with at
least one of their adult offspring.36 Only one-third of the parents
informed their minor children, a striking contrast to the 50% or
more of parents tested for BRCA1 and BRAC2 who inform minor
children about their genetic test results. Concern about prevent-
able cancers occurring in uninformed relatives of mutation car-
riers led Finnish researchers to pilot a program in which medical
professionals directly contacted uninformed relatives at 50% risk
of carrying a familial mismatch-repair mutation conveying high
risk for colorectal and associated cancers. 37 Those consenting
learned about the possibility of hereditary cancer in their family
and were offered genetic counseling and testing. Of the 286 par-
ticipants, 51% consented. Among the 34 directly contacted rela-
tives who proved to be mutation carriers, 34% (n=11) were found
on the first post-test colonoscopy to have colorectal neoplasia,
80 Section III screening and testing for genetic susceptibility to cancer
two with locally advanced cancers. This supported the views of
the researchers about the importance of early information about
hereditary CRC risk.
Influence of Genetic Testing on Childbearing
Data is emerging about attitudes toward childbearing and prena-
tal genetic testing among individuals at risk for LS. Among 161
individuals assessed just prior to undergoing clinical genetic test-
ing for LS, the majority already had at least one child, and only 9%
said that their familial cancer risk had led them to decide not to
have (more) children. When asked if it was ethical to offer prenatal
testing (pre-implementation genetic diagnosis [PGD] or prenatal
genetic testing [PND]), 66% agreed/strongly agreed, 25% were
neutral, and only 9% strongly disagreed. Of the 48 subjects plan-
ning future pregnancies, 56% thought their test result would not
influence their childbearing plans, 29% thought they would plan
to have their children earlier in order to have prophylactic oopho-
rectomy sooner, 27% would consider adoption, and only 10% said
they would not have children if they were found to be a muta-
tion carrier. At one-year post-test follow-up, however, consider-
ably fewer mutation carriers evidenced interest in prenatal testing,
with only 22% considering pre-implantation genetic diagnosis for
a future pregnancy.38
FAMILIAL ADENOMATOUS POLYPOSIS
Medical Implications for Mutation Carriers
Familial adenomatous polyposis (FAP) is a rare (1 in 500010,000
births) genetic condition that predisposes mutation carriers to
very early CRC, preceded by the development of hundreds of
colonic polyps and to a range of extraintestinal manifestations,
some of which can also be life-threatening. 3 Approximately
60%70% of cases are traceable to familial mutations present in
parents; others appear to be new mutations. FAP is a dominant,
autosomal disorder with a penetrance of 100%, meaning that
cancer develops universally in mutation carriers, rarely before
age 20, but typically decades earlier than CRC in the general
population. FAP is due to mutations in the APC gene on chromo-
some 5, which can be identified by genetic testing. Because the
polyps associated with FAP develop as early as the teens or twen-
ties, annual colonoscopic screening is initiated in those suspected
or known to be mutation carriers by age 1012.3 Genetic testing
is often initiated around puberty or mid-adolescence (and, with
suggestive symptoms, even earlier).3 Prophylactic colectomy (i.e.,
removal of part of the colon) is the ultimate treatment for FAP,
and surgery is often completed in young adulthood to try to pre-
vent the development of CRC. There are two standard surgeries
that are done; each surgery is typically completed in two stages,
with an intermediate ileostomy. The two surgeries, ileo-rectal
anastomosis (IRA) or ileal pouch-anal anastomosis (IPAA), have
ramifications in terms of increased numbers of daily bowel move-
ments (34 for IRA and 45 for IPAA) and continence (72%98% and lower self-esteem were associated with higher anxiety in this
for IRA and 60%98% for IPAA), which, in turn, affect psycho-
social functioning.39
APC genetic testing is often viewed as a medical management
decision, since there is clear and immediate benefit to the testing;
hence, it is one of the few circumstances where the genetic test-
ing of children is advised as standard of care. The identification
of those found not to be mutation carriers, that is, those found
through genetic testing not to carry the familial mutation, ends
the need for annual colonoscopic screening for those individuals
and also ends worry about future surgery, with consequent cost
savings and avoidance of psychosocial harms.
Psychosocial Issues
Uptake
The question asked about APC testing is typically, When? rather
than Whether? due to the medical and psychosocial benefits
for children and adolescents of learning whether they are APC
mutation carriers. There are data suggesting that uptake of genetic
testing for FAP is higher than that for LS and may be above 80%
among asymptomatic at-risk adults39 and 96% for children ages
1016.40
The optimal timing of APC testing occurs when the individ-
ual being tested is of sufficient age, maturity, and psychological
stability to understand the reasons that testing is being offered
and the implications of the test result. 3 In an Australian study
of young adults with FAP, however, 61% had a preference to
test their children at birth or very early in life (before age 10),
before any such understanding could occur.40 The age at which
children with a parent with FAP had genetic testing varied in
a recent study from one to 16years, both overly early and late
assessments.41 This suggests the need for ongoing counseling of
parents with FAP about the benefits and risks of genetic testing
for their children. Genetic counseling and follow-up along the
life span are recommended, in recognition of the lifelong issues
raised by FAP. 3,40
Distress
Several studies have investigated the distress of children tested
for APC mutations. Mean scores for individuals in these studies
remain in the normal range on measures of anxiety, depression,
and behavioral functioning following disclosure of test results. 39
There is evidence that the impact of genetic testing of individual
family members is moderated by knowledge of the results of other
family members.42 In families where some children tested positive
and others negative, the parents who were not the FAP mutation
carrier had significantly increased depression scores after disclo-
sure of their childrens results. Similarly, in a Norwegian study of
22 adolescent offspring of a parent with FAP, 30%70% fulfilled
criteria for a psychiatric diagnosis.42 This finding was indepen-
dent of the FAP status of the offspring, illustrating the psychologi-
cal burden of having an affected parent.
Though in most studies of the impact of genetic testing for
hereditary CRC, mean scores of distress and quality of life are not
above population norms,43 subsets of individuals with greater dis-
tress have been found in all studies. In a cross-sectional study of
adults who had undergone APC genetic testing, mutation carriers
had higher levels of state anxiety than non-carriers and were more
likely to have clinically significant anxiety levels. Lower optimism
study, and FAP-related distress, perceived seriousness of FAP, and
belief in the accuracy of genetic testing were associated with more
state anxiety among carriers.
In a long-term follow-up study, 20% had moderate to severe dis-
tress,44 26% had received psychosocial support, and an additional
30% wanted more psychosocial care. Forty percent said that work
and relationships were adversely affected by FAP.43 Similarly,
 chapter 12
moderate to severe psychological distress was reported in 30% of
the partners of FAP patients. While they also reported problems
with work, leisure activities, and relationships, most partners
reported good overall quality of life.44
Individuals testing negative for APC mutations, while relieved
of much of the medical burden of the disease, often experience
guilt about avoiding the lifelong worry and need for intervention
that their parents and/or siblings often share.45 Anxiety may be
high in these children as well, and their need for support should
be considered in any plan to offer emotional counseling to FAP
family members.
An Australian study of 18- to 35-year-old young adults with or
at risk for FAP, which utilized FAP-specific measures of distress,
suggested that unmarried (i.e., single) individuals and those
who had had more extensive initial surgery had greater dis-
tress. 39 Psychological functioning was highest among subjects
who had not yet had any surgery, with more negative outcomes
related to body image, sexual functioning, and affect reported
by those who had had IPAA surgery. Having such intrusive sur-
gery during the period of young adulthood when sexual iden-
tity and sexual relationships are being established is, the authors
believe, highly problematic. They advise that when medically
feasible, psychosocial factors should be incorporated into surgi-
cal decision-making.
Screening
Less is known about psychological aspects of screening for FAP
than about LS screening after genetic testing. One study of a small
number of individuals (aged 1753years) with a family history of
FAP who were offered participation in a genetic counseling and
testing protocol found that, among those who were asymptom-
atic, all reported undergoing at least one endoscopic surveillance
before participation in the study.46 Only 33% (2 of 6 patients)
reported continuing screening at the recommended interval. Of
the affected people who had undergone colectomy, 92% (11 of 12
patients) were adherent to recommended colorectal surveillance.
In another cross-sectional study, 52% of those with FAP and 46% of
relatives at risk for FAP had undergone recommended endoscopic
screening.47 Among people who had or were at risk for attenu-
ated FAP, 58% and 33%, respectively, had undergone screening.
Compared with people who had undergone screening within the
recommended time interval, those who had not screened were less
likely to recall provider recommendations for screening and were
more likely to lack health insurance or insurance reimbursement
for screening and were more likely to believe that they were not
at increased risk for CRC. Only 42% of the study population had
ever undergone genetic counseling. Continued improvement in
anesthetics for screening is also essential to significantly improve
adherence.47
Family Communication
There is remarkably little data on family communication in
families affected by FAP. Qualitative interviews with five
mutation-positive and five mutation-negative subjects ages
1225years about testing they experienced between ages 10 and 17
illustrate that the engagement of children in this age group in the
decisions and planning for testing is critical, and that having time
between genetic counseling and genetic testing might be preferred
to allow for better understanding of the nature and significance
of testing.48
genetic testing for hereditary colorectal cancer 81
Influence of Genetic Testing on Childbearing
Interest in prenatal genetic screening seems higher among adults
with FAP than among those undergoing testing for LS.49 Studies
reported high interest in PGD among affected subjects, but also
indicated that many young adults with FAP are not routinely
informed about PGD and PND options.50
DISCUSSION
The literature on psychosocial aspects of hereditary CRC is con-
siderably more limited than that on psychosocial aspects of
genetic counseling and testing for hereditary breast-ovarian can-
cer, but it has grown substantially in recent years, including both
quantitative and qualitative studies and several comprehensive
reviews. Nonetheless, it appears that facts are emerging about the
impact of genetic testing on individuals at high risk for hereditary
cancers. Generally, mean distress scores for individuals undergo-
ing genetic testing for hereditary CRC are not above population
norms. However, subsets of subjectssometimes a quarter of the
sample or moreexperience significant disease- or testing-related
distress. Distress may be related to the intensity of recommended
screening, single marital status, test results of other family mem-
bers, or the impact of the surgery. These factors, many tied to psy-
chological rather than medical variables, suggest that counseling,
both genetic and psychological, is important for individuals deal-
ing with hereditary disease, not just at the time of testing, but at
many other points along the trajectory of patient care for these
diseases. One of the differentiating features of hereditary disease
is that, as patients have said, Its never over. As such, support ser-
vices must be geared to the ongoing needs of those who continue
to face genetic risk for serious diseases. Future research will help
to define the best ways to provide such services.
The issues of how best to inform relatives about familial muta-
tions predisposing to markedly elevated, early cancer risks and
the definition of duty to warn in the context of genetic testing
for diseases where potentially life-saving interventions exist raise
interesting and challenging questions. Attitudes may be chang-
ing about the relative value of confidentiality and privacy and the
need to inform at-risk relatives about their high levels of cancer
risk and about options to detect or prevent cancer. Recognizing
that there are some families where relatives do not communicate
puts the onus on medical professionals to communicate with such
members. To save lives, all family members of someone carrying a
deleterious mutation must be informed by whoever is able to do so
(family member, physician, or genetic counselor). Being notified
of the possibility twice versus not being notified at all is a much
better solution to this problem.34
We do not yet fully understand how broadly the availability of
genetic testing for hereditary disease affects family relationships.
It is clear that there are implications for the quality of the marital
relationship, the parent-child relationship, and relationships with
extended family members. It is also clear that there are ways in
which strong family bonds can positively influence an individuals
ability to cope with the burdens of hereditary cancer.
Psychosocial factors play a large role in the impact of cancer
genetic testing for CRC. Uptake of testing, adherence to screen-
ing recommendations, surgical choice, and family communica-
tion are likely to be influenced by the individuals experience of
hereditary illness in his or her family, the individuals affective
82 Section III screening and testing for genetic susceptibility to cancer
style and information preferences, as well as other little-studied
social factors, such as socioeconomic status and access to genetic
health services. Such factors will impact the ultimate integration
of genetic testing into general medical practice. It is also impor-
tant that routine taking of multigenerational cancer family his-
tories for all CRC patients becomes standard of care. Hereditary
CRC offers a model illustrating the potentially life-saving value of
genetic testing where critical attention to psychological issues and
support needs may optimize utilization.
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 SECTION IV

Psychological Issues
Related to Site of Cancer

13 Central Nervous System Tumors 87 19 Skin Neoplasms and Malignant Melanoma 128
Alan D.Valentine Peter C.Trask
14 Head and Neck Cancer 92 20 Breast Cancer 134
Gerald M.Devins, Kristen J.Otto, TishKnobf
Jonathan C.Irish, and GaryRodin
21 Sarcoma 139
15 Gastrointestinal and Hepatobiliary Michelle R.Brown, James Klosky, and Sheri L.Spunt
Cancers 98
22 Hematopoietic Dyscrasias and Stem Cell
Virginia Sun and Robert S.Krouse
Transplantation 144
16 Lung Cancer 105 Jesse R.Fann and MitchLevy
Mary E.Cooley, Hermine Poghosyan, and
LindaSarna
23 HIV Infection and AIDS-Associated
Neoplasms 155
17 Genitourinary Malignancies 114 Joanna S.Dognin and Peter A.Selwyn
Andrew J.Roth and Alejandro Gonzlez-Restrepo
24 Tumor of Unknown Primary Site 162
18 Gynecologic Cancers 121 Anna M.Varghese and Leonard B.Saltz
Heidi Donovan and Teresa L.Hagan
 CHAPTER13
Central Nervous
System Tumors
Alan D.Valentine
INTRODUCTION
Central nervous system (CNS) tumors, whether of primary or
metastatic origin, are among the most challenging forms of can-
cer with which patients and caregivers must contend. Vulnerable
to the many psychosocial stresses associated with cancer diag-
nosis and treatment, brain tumor patients in particular (often, if
not always) face progressive compromise of peripheral neurologi-
cal function, subtle and overt cognitive dysfunction, and widely
variable changes of mood and affect. Treatment of CNS cancer
(e.g., surgery, chemotherapy, radiation therapy [XRT]) is itself
actively or potentially neurotoxic. Associated loss of indepen-
dence and ability to function safely and effectively at home and
in the workplace often places physical, emotional, and financial
hardships on patients and caregivers. The fact that many primary
malignant brain tumors are associated with poor outcomes and
that progression of systemic cancers into the CNS is an ominous
indicator of disease trajectory makes CNS cancer especially emo-
tionally burdensome from the time it is detected. Finally, the com-
mon Western association of brain with mind means that CNS
cancer, more than any other form of malignancy, may constitute a
threat to an individuals sense of self and personal integrity.
Primary brain and CNS tumors are relatively uncommon,
accounting for approximately 23,380 (1.4%) of new cancer
diagnoses, and 14,320 (2.4%) cancer-related deaths annually.1
Meningiomas, which are usually non-malignant, are the most
common tumor type. Glioblastomas are the most common pri-
mary malignant brain tumors, accounting for approximately 16%
of all new primary brain tumors and 45% of primary malignant
brain tumors.2 Unfortunately, they are generally associated with
dismal prognoses, with five-year survival rates of < 5%.2
Central nervous system tumors, which are usually benign (i.e.,
meningiomas, craniopharyngiomas), can cause significant neuro-
psychiatric and emotional morbidity because of mass effect, dis-
ruption of endocrine function, and recurrence.
Metastatic tumors are by far the most common form of intracra-
nial brain neoplasm in adults, occurring at least two to three times
more often than primary brain tumors.3,4 Incidence rates of meta-
static brain tumors vary between 9% and 17%;5 these are likely
underestimates. Incidence rates are thought to be increasing with
improved neuroimaging surveillance and more effective systemic
therapies (putting patients at greater risk for eventual malignant
invasion of the CNS).5 Several primary cancers have a high likeli-
hood of metastasis to the brain. In general descending order, these
include lung (especially small cell and adenocarcinoma), breast,
melanoma, renal cell, and colon. Tumors of unknown primary
origin are also likely to present as metastatic brain lesions. 5,6 It
is unclear whether primary and metastatic brain tumors are
routinely associated with distinctly different neuropsychiatric
sequelae, and from a clinical standpoint it may be best to consider
the issue as one of brain injury, regardless of cause.
Leptomeningeal spread of cancer most often occurs in the set-
ting of end stage disease, and occurs in 5%8% of patients with
systemic cancers, including solid tumors (especially lung can-
cer, breast cancer, and melanoma), and also lymphomas and
leukemias.7 Patients with leptomeningeal metastasis are likely
to develop diffuse neurological deficits (including mental status
changes) and usually require treatment that is associated with
neuropsychiatric side effects (i.e., brain radiation, intrathecal
chemotherapy).
COGNITIVE AND BEHAVIORAL
DYSFUNCTION
Cognitive dysfunction is a common consequence of CNS malig-
nancy. In affected patients evaluated with formal neuropsycho-
logical test batteries, rates of cognitive dysfunction vary from 29%
to 90%, depending on disease stage and associated treatment.8
Cognitive impairment is a leading, if not primary, variable affect-
ing quality of life (QOL) for brain tumor patients and caregivers
and may predict survival.9 Virtually all common disorders of
memory, attention, arousal, and perception, and many unique
presentations, have been described in brain tumor patients. In the
absence of focal neurological findings or symptoms, there is noth-
ing that reliably points to brain tumors as causes of such cogni-
tive impairment, though the presence of focal neurological signs
and symptoms and presentations in certain settings (i.e., patients
with known malignancy, long-term smokers, and acute behavior
changes) will raise the index of suspicion.
Several factors are of potential influence. These include lesion
location, rate of tumor growth, number of tumor foci, patient age,
secondary effects of tumor or treatment, and diaschisis effects.
88 Section IV psychological issues related to site of cancer
With notable possible exceptions, the following general obser-
vations can be made. Rapidly growing tumors are more likely to
cause acute altered mental status (e.g., delirium) or sudden loss
of cognitive ability. Slow growing benign or malignant tumors
are likely to cause insidious changes of cognition, consistent with
the early stages of primary dementias. Clinical scenarios associ-
ated with multiple tumor foci increase the likelihood of involve-
ment of critical CNS structures or neurotransmitter pathways and
consequently increase risk for altered cognition. The elderly and
patients with premorbid cognitive impairment may have dimin-
ished cognitive reserve at baseline and are thus more vulnerable to
new or progressing CNS insults than younger or very high func-
tioning patients.
Because of the routine availability of neuroimaging modali-
ties, the association of behavioral changes or cognitive deficits
and lesion location is of decreased importance for diagnostic or
localizing purposes.10 Abrain tumors anatomical location is only
one of several variables (e.g., tumor histology, disease progression,
comorbid physical conditions, psychological status) that might
affect a given presentation.11 However, lesion location may be use-
ful to clinicians and caregivers regarding expected difficulties in
the disease trajectory. Dominant hemisphere lesions (or effects
of their treatment) may be associated with loss of verbal or writ-
ten language function. Non-dominant hemisphere disease may
be associated with impairment of visual-spatial processing abil-
ity. Frontal and temporal lesions of either hemisphere can cause
memory dysfunction, and more posterior-located disease may
be associated with inability to process visual cues, resulting in
various agnosias. Treatment effects, including anatomic damage
caused by surgery or radiation therapy, may also cause cognitive
dysfunction.
Frontal Lobe Tumors
Frontal lobe tumors are frequently associated with cognitive
dysfunction. While the term frontal lobe syndrome is widely
accepted in clinical practice, it must be kept in mind that distant
pathology can cause presentations identical to that associated with
frontal lesions. Descriptions of frontal-subcortical neural circuits
and behavioral syndromes caused by non-malignant diseases or
brain injuries are relevant to problems routinely associated with
management of CNS cancer.12
Frontal lobe pathology associated with tumor or treatment
is likely to result in compromised higher executive function.
In this dorsolateral-prefrontal/dysexecutive syndrome, patients
develop psychomotor slowing. They lose the ability to switch
cognitive sets, perseverate, and have difficulty taking on new
tasks. They may develop diminished attention to self-care and
flattening of affect. Quite often, they appear to be depressed. The
constellation of symptoms also suggests progression of subcorti-
cal dementia.
Patients may also develop an orbitofrontal/disinhibited type
syndrome. Such individuals are emotionally labile, demonstrate
poor social judgment, and have little insight into their behavior.
Dysregulation of the anterior cingulate circuit may be associated
with profound verbal and motor slowing and/or apathy syn-
dromes.12 In the setting of CNS cancer, it is likely that dysexecu-
tive syndromes are most common. However, mixed presentations
should be expected.
Temporal Lobe Tumors
Cognitive dysfunction associated with temporal lobe tumors may
be a function of direct damage to dominant/non-dominant sites,
resulting in impairment of verbal and nonverbal memory as well as
receptive and/or expressive language function. Physical or physi-
ological disruption of neurotransmitter pathways to and from the
frontal lobes can also result in frontal/prefrontal lobe syndromes
characteristic of damage to anterior structures. Seizure activity
may also cause transient cognitive dysfunction, and associated
pharmacotherapy (especially the older, more sedating anticonvul-
sants) may contribute to ongoing dysfunction.
Diencephalon Tumors
These tumors are often associated with memory dysfunction.
Compromise of frontal-subcortical circuits in diencephalic struc-
tures would also predispose to the development of frontal lobe
syndromes. Parietal lobe tumors are more likely to be associated
with sensory disturbances (i.e., agnosias) and neglect syndromes
than frank memory dysfunction, though deficits of visual pro-
cessing speed and visual short-term memory have been described
with parietal lesions.13 Pituitary tumors (i.e., adenomas, cranio-
pharyngiomas) with adverse effects on endocrine function are
associated with mood and dysexectutive syndromes.14
EMOTIONAL DISTURBANCE
Besides cognitive impairment consistent with dementias, pre-
sentations consistent with almost all primary mood and thought
disorders have been described in patients with primary and meta-
static brain tumors. The same is true of rare neuropsychiatric
syndromes. At first glance and absent physical examination and
workup, there is little, if anything, that distinguishes psychopa-
thology due to brain tumors from primary psychiatric disorders.
In the absence of other focal neurological signs or symptoms, it
is uncommon but possible for psychiatric presentations to be the
initial indication of an occult CNS carcinoma.10 Often the pre-
sentation involves coarsening or exaggeration of premorbid per-
sonality traits. Changes are usually subtle early on and become
more pronounced with disease progression. On occasion there
is a marked, fairly dramatic change that brings the patient to
evaluation.
Disinhibition presenting as paroxysmal rage, sudden violence,
and impulsivity may be encountered, and may require environ-
mental changes or antipsychotics and mood stabilizers to protect
the patient and others. These behaviors typically resolve gradually
as an unintended consequence of disease progression.
Anxiety and schizophrenia have traditionally been associated
with temporal lobe tumors. The former association is probably
more appropriate. Psychosis manifesting as hallucinations and/
or delusions can be a function of delirium, seizure, and drug side
effects.
Mood Disorders
Depressive disorders are common complications of primary and
metastatic brain tumors, with significant adverse effects on patient
quality of life, functional impairment, caregiver distress, and pos-
sibly survival.1517 Rates of depression in patients with primary
gliomas vary from 6% to 93% depending on diagnostic criteria

employed, disease state, and setting.15 Using research diagnos-
tic criteria, up to 20% of patients with gliomas may experience
major depression in the first six months after diagnosis.18 Mood
disorders, including depression and mania, have been most often
associated with frontal and temporal lobe lesions, and have also
been reported with lesions in other locations. Again, because of
diaschisis and other factors, tumors in other locations could easily
cause the same presentations, and presently there is not convinc-
ing evidence of a causal relationship between brain tumor location
and depression.15 In this setting, the difficulties encountered in
the diagnosis of mood disorders in general oncology obtain and
probably are more confounding.19
Anxiety
Rates of anxiety in patients with primary brain tumors have
recently been reported to vary from 13% to 75%, with differences
attributable to different detection methods and points of assess-
ment.20,21 There is a tendency for rates of anxiety to trend down-
ward after treatment (radiation or surgery), possibly reflecting
the reactive nature of initial symptomatology and the subsequent
physical and psychological benefits of treatment.22
ADVERSE EFFECTS OF THERAPY
Treatments of primary and metastatic brain tumors are them-
selves potential causes of psychiatric morbidity.
Radiation Therapy
Radiation therapy is integral to management of known primary
and metastatic CNS tumors, and as prophylaxis against lepto-
meningeal metastasis to the CNS. Up to 90% of patients who sur-
vive > 6months following whole brain radiation therapy develop
some degree of treatment-induced cognitive impairment.23 Brain
XRT is associated with three major neurotoxicity syndromes. 24
Acute radiation syndrome usually occurs during or shortly after
completion of XRT, and is characterized by delirium, nausea, and
vomiting. It is thought to be associated with cerebral edema and
raised intracranial pressure. Patients undergoing cranial XRT are
usually treated with corticosteroids to prevent or minimize raised
intracranial pressure and so the acute radiation syndrome is infre-
quently encountered. Early delayed radiation syndrome is thought
to be due to temporary demyelination and is characterized by the
re-emergence of neurological symptoms and sometimes a som-
nolence syndrome. It usually resolves over days or weeks, and
again, steroids are protective. Late delayed radiation syndrome
develops months or years after completion of XRT and involves
progressive, often irreversible, cognitive impairment. Changes in
vascular and glial cell populations, impaired hippocampal neu-
rogenesis, and neuroinflammation are implicated as primary
causes of the late delayed syndrome and associated cognitive
impairment.23 Factors that influence XRT-induced neurotoxicity
include cumulative radiation dose, fraction size, and concomitant
chemotherapy.25
Chemotherapy
The blood-brain barrier prevents passage of many chemotherapy
and other antineoplastic agents into the CNS. Several antineo-
plastic drugs are associated with neuropsychiatric side effects
Chapter13 central nervous system tumors 89
when delivered to the CNS by intravenous or intrathecal routes.
Acute encephalopathy is seen with the administration of metho-
trexate, which may also cause a permanent leukoencephalopathy.
Cytosine arabinoside is associated with acute encephalopathy,
which usually resolves, and cerebellar syndrome, which may
resolve or persist indefinitely. The interferons are associated with
variable degrees of cognitive dysfunction. Procarbazine is a weak
monoamine oxidase inhibitor that occasionally causes anxiety
and must be used cautiously, if at all, with most antipsychotic and
antidepressant drugs.
Surgery
Surgical resection of primary and metastatic brain tumors is often
tolerated remarkably well. However, perioperative delirium is
common. Patients with lesions in sensitive areas may experience
temporary (sometimes permanent) language or motor deficits
that result in problematic anxiety and depression.
Corticosteroids, Analgesics, Anticonvulsants
Steroids are ubiquitous in cancer care. Patients with primary or
metastatic brain tumors are likely to be treated with corticoste-
roids at various points in the disease process, especially during
and after XRT and after surgery. In some cases the patient is obli-
gated to treatment with steroids indefinitely. While steroids are
generally protective against vasogenic edema and raised intracra-
nial pressure, the drugs can cause psychosis, mania, and, espe-
cially with long-term use, depressive symptoms. Dose decrease or
discontinuation is often helpful. When that is not possible, symp-
tomatic treatment with psychotropic medications is appropriate.
Patients treated for primary or metastatic brain tumors may
be more vulnerable to the sedating effects of opioid analge-
sics. Anticonvulsants, especially but not exclusively older drugs
including phenobarbital, phenytoin, and carbamazepine, may
cause sedation and confusion at therapeutic or high levels.26
ASSESSMENT
Assessment of psychiatric symptoms in patients with brain tumors
can be challenging. The overlap between primary or reactive
mood, anxiety, and thought disorders and those caused by tumor
or treatment is considerable. Patients are often poor historians.
Routine screening for emotional distress is now considered
standard of care in oncology, and specific screens for depressive
symptoms in neuro-oncology patients may be useful.19,27 The
evaluation process is fairly straightforward, if not always reveal-
ing. Athorough history should be obtained with attention to pre-
morbid symptomatology. In cases of cognitive impairment, it is
helpful and often necessary to rely on family members or other
caregivers for aspects of the history. This is also applicable to
assessment of depression, where patients may under-report the
severity of symptoms compared to proxies.28 Because of the great
emotional and prognostic significance of cancer in the nervous
system, it is important to ask anxious and depressed patients
about reactions to diagnosis, understanding of clinical status, and
perceptions of the future.
A search for reversible and treatable causes of symptoms should
be commenced. This includes review of medications as well as lab-
oratory, electrophysiological, and neuroimaging studies. Patients
90 Section IV psychological issues related to site of cancer
who are treated in academic and large community cancer centers
are followed closely, and it is unlikely that psycho-oncologists who
practice in those settings will be required to make a diagnosis of
cancer in the nervous system. However, an index of suspicion is
always warranted and, especially in the setting of coexistent focal
neurological signs and symptoms (e.g., headache, seizure, gait dis-
turbance, sensory-motor impairment), the possibility of new or
progressive CNS disease should be considered.
Neuropsychological Assessment
Neuropsychological assessment is invaluable in evaluation of the
brain tumor patient with behavioral symptoms. In major medical
centers such assessment is a routine component of treatment plan-
ning before surgery or XRT. Especially in the early stages of dis-
ease, neuropsychological test batteries can detect and characterize
subtle cognitive deficits, with impact on quality of life, efficacy of
treatment, and possibly survival.2931 Serial tests help track the
rate of recovery or decline and can be used to develop individual-
ized behavioral and pharmacological interventions.29
Pharmacotherapy
Currently no data are available from randomized clinical trials to
guide the use of psychotropic drugs for management of behavioral
sequelae of brain tumors. 32 With a few significant exceptions,
the guidelines for use of antidepressants, anxiolytics, and anti-
psychotics in cancer patients are applicable (see Chapter37). The
general recommendation to start low and go slow is especially
applicable to treatment of patients with cancer in the CNS.
Antidepressants
Most antidepressants can be used safely in brain tumor patients.
Tricyclic antidepressants may not be well tolerated because of
sedative and anticholinergic effects, and it is possible that brain
tumor patients would be especially sensitive to the more limited
anticholinergic effects of other antidepressants. Use of bupropion
is not recommended in any patient with past history of seizures
or current seizure risk. Drugdrug interactions should be consid-
ered. Concomitant use of selective serotonin-reuptake inhibitors
and some anticonvulsants (i.e., carbamazepine, phenytoin) can
increase levels of the latter.
Anxiolytics
Brain tumor patients may be especially sensitive to the sedative
effects of benzodiazepines (BZPs). The use of shorter half-life
drugs (i.e., alprazolam, lorazepam) is preferred. BZPs may also
cause disinhibition or agitation in patients with significant cog-
nitive impairment. In such cases low-dose antipsychotics may be
used for the same purpose. Buspirone metabolism may be altered
by some anticonvulsants.
Antipsychotics
These medications are generally safe in patients with CNS cancer.
Many, if not all, patients with CNS disease are on anticonvulsants,
minimizing the problem of lowered seizure threshold associated
with phenothiazine and butyrophenone antipsychotics.
Atypical antipsychotics (i.e., quetiapine, olanzapine) are associ-
ated with metabolic syndrome; attention to serum glucose levels
is appropriate, especially in patients treated with corticosteroids.
Psychotherapy
Psychotherapy in the setting of CNS cancer is usually support-
ive, using crisis intervention and psychoeducational techniques.
Aprimary goal is to provide accurate information, while decreas-
ing uncertainty and fear to the degree possible. Relaxation
training can be very useful for patients without major cognitive
impairment. Patients and caregivers may benefit from participa-
tion in support groups. National advocacy organizations such as
the National Brain Tumor Society (http://www.braintumor.org/)
and the American Brain Tumor Association (http://www.abta.
org/) can provide other valuable resources for the supportive care
of patients.
Cognitive and Vocational Rehabilitation
Patients with benign and malignant brain tumors may ben-
efit greatly from cognitive and vocational rehabilitation. 33,34
Neuropsychological and vocational testing/rehabilitation can
identify potentially remediable deficits and help patients and care-
givers develop realistic goals regarding education, employment,
and independence.35
FAMILIES, CAREGIVERS, AND STAFF
Families and caregivers of patients with cancer in the ner-
vous system face all the problems of families of patients with
non-neurological cancer; in addition, they often have the burden
of dealing with progressive cognitive decline and poor progno-
sis.36 Rates of psychiatric morbidity are higher in caregivers than
in the general population. There is potential for adversely affected
physical and emotional health, family and vocational function,
and care of the identified patient. Ongoing medical and psychoso-
cial care of the patient with CNS cancer should include assessment
of caregiver support. Families and caregivers can benefit from
many of the supportive techniques used to help patients. Support
groups and education can be especially helpful. In some cases it
may be necessary to identify or provide resources for individual
therapy or pharmacotherapy for depression.
Neuro-oncology staff members may also be especially vulner-
able to emotional distress, as they will work with highly complex
patients in a setting where loss, or the prospect of loss, is a part of
daily practice. Structured group support rounds and individual
supervision of trainees are among techniques that can be used to
mitigate the stress associated with this specialized practice.
CONCLUSION
Patients with central nervous system cancer and their caregivers
are uniquely vulnerable to distress and dysfunction in all domains
of psycho-oncology. While this presents great challenges, it also
affords clinicians and researchers in the field many opportunities
to be of service to this special population.
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 CHAPTER14
Head and Neck Cancer
Gerald M.Devins, Kristen J.Otto,
Jonathan C.Irish, and Gary Rodin
Head and neck cancer (HNC) includes malignancies that arise on
the lips and in the mouth, pharynx (including the nasopharynx,
oropharynx, and hypopharynx), larynx, salivary glands, parana-
sal sinuses, and skin of the head and neck. It is the sixth most
common cancer worldwide, accounting for approximately 5% of
all new cancers. Worldwide, squamous cell carcinoma (SCC), the
most common HNC, accounts for approximately 250,000 deaths
annually. Mean age at diagnosis of SCCs of the upper aerodiges-
tive tract is 60 years. HNC introduces significant psychosocial
challenges and adaptive demands. Reviews of this subject appear
in earlier editions of this textbook.1,2 This chapter complements its
predecessors, highlighting recent developments.
BEHAVIORAL RISK FACTORS FOR HEAD
AND NECK CANCER
Behavioral and lifestyle factors play important roles in HNC eti-
ology. Tobacco use, the most important risk factor for head and
neck SCCs, is linked to approximately 85% of cases. Other asso-
ciations include betel nut chewing with oral SCC and wood or
nickel-dust inhalation with paranasal sinus cancers. Unprotected
sun exposure is an important risk factor for SCCs of the lips and
skin. Sexual activity and the number of sexual partners are asso-
ciated with human papillomavirus (HPV) infection and with
oral-cavity and oropharynx SCCs. HPV-associated cancers often
occur in people who are younger than those with HNC attrib-
utable to other causes. Response to treatment and prognosis are
more favorable in such cases.
MEDICAL AND SURGICAL TREATMENT
The best oncologic control must be balanced against the preserva-
tion of form and function. Organ preservation strategies include
radiation (with or without concurrent chemotherapy) to treat can-
cers of the pharynx and larynx. Surgical treatment in these sub-
sites is often reserved as salvage therapy. For subsites, such as the
oral cavity, salivary glands, and sinuses, surgery is often first-line
treatment, with postoperative radiation to optimize tumor con-
trol. Although treatment varies by subsite, the goal of organ pres-
ervation is always important when crucial functions (e.g., speech
and swallowing) are at risk. Indeed, treatment effects may be as
important as the cancer itself in affecting quality of life. Advances
in surgical-reconstructive techniques, including microvascular
free-tissue transfer, have enabled enormous improvements in
postoperative functional and cosmetic outcomes, establishing
surgical therapy as a mainstay in treating many SCCs.
Prognosis
The US Surveillance, Epidemiology, and End Results (SEER)
Program reports overall five-year survival at 62.2% based on
20032009 data, but individual survival varies by tumor stage and
subsite, comorbid disease, ability to tolerate optimal treatment
regimens, continued tobacco and alcohol exposure, and second
primary malignancies.
Symptoms and Functional Impairment
HNC symptoms are often multiple and vary by the site of ori-
gin. Pain, difficulty swallowing (dysphagia), painful swallowing
(odynophagia), hoarse voice (dysphonia), earache (otalgia), weight
loss, and shortness of breath are the most common presenting
symptoms. Symptom distress is often severe and compromises
quality of life.3 All who present with new SCCs of the head and
neck and adjacent subsites warrant comprehensive investigation,
due to the propensity for multiple or metachronous primaries.
Second lesions within the head and neck occur in 3%5% of cases.
Primary lung cancers are found in approximately 6% of cases.
Ongoing clinical surveillance is crucial in those with a significant
history of tobacco and alcohol exposure because they often have
field cancerization that places them at long-term risk for new
primary development due to carcinogen exposure along the upper
aerodigestive tract.
Organ preservation regimens (radiation or concurrent
radiation and chemotherapy) are now the standard of care, but
long-term side effects that can compromise organ function still
occur. Advances in targeted radiation delivery, with the use of
intensity-modulated radiation therapy (IMRT), reduce collat-
eral damage to normal surrounding tissue, while maximizing
dosage to the tumor volume. Despite these advances, treatment
side effects are often significant and life changing. Radiation to
the head and neck often causes a substantial permanent reduc-
tion in saliva production, leading to chronic dry mouth (xerosto-
mia). It leads to chronic fibrosis of the subcutaneous tissues and of
the pharyngeal and esophageal musculature, causing dysphagia

and, occasionally, stricture formation. Radiation-related edema
and fibrosis can cause airway problems, necessitating chronic tra-
cheostomy dependence. Altered or diminished taste (dysgeusia),
decreased neck-and-shoulder range of motion, and chronic pain
can also occur.
The interaction of certain factors may amplify adverse treat-
ment effects. For example, side effects can intensify and persist
when chemotherapy is delivered concurrently with radiation.
Long-term gastrostomy-tube dependence occurs in as many
as 33% of patients. Surgical therapy imposes its own long-term
problems. Profound quality of life (QOL) effects often result from
undesirable cosmetic outcomes related to chronic tracheostomy
or tracheostoma dependence, incisions on the face and neck, and
extirpation of whole organs (e.g., eyes, nose, larynx, tongue, and
mandible). Facial disfigurement can lead to shame and social
avoidance, compromising QOL.
PSYCHOSOCIAL STRESSORS
A burgeoning literature documents multiple stressors and adap-
tive challenges in HNC.4 Many are common across cancers,
including the threat of death, uncertainty, intrusive treatments,
side effects, dependency, feeling that life must be put on hold
or that one has not returned to normal, threat of recurrence,
disabling symptoms (e.g., fatigue, pain), and interference with
lifestyles, activities, and interests (i.e., illness intrusiveness). HNC
introduces incremental stressors, many of which entail specific
functional difficulties related to swallowing, chewing, eating, and
speaking, as well as chronic pain. Specific psychosocial stressors
include disfigurement and stigma.
Disfigurement
Facial disfigurement, largely attributable to surgery, has long been
considered among the most disturbing stressors associated with
HNC, because the face is highly visible and is vitally important to the
sense of self, interpersonal relationships, and communication. Early
studies indicate markedly deleterious consequences of facial disfig-
urement. Disfigurement is associated with negative effects on body-
and self-image and on romantic and other relationships, sex life, and
mood.5,6 Some of these effects may be more pronounced for marital
partners than for patients. Surgical reconstruction can reduce resid-
ual disfigurement, which may ameliorate some adverse psychosocial
effects.5 Individual characteristics and the social environment (e.g.,
social support) may moderate the effect of disfigurement.7 Social
self-efficacy (i.e., the belief that one can exercise control over the
reactions and openness of other people) may moderate the psycho-
social impact of disfigurement. Cancer-related dysfunctions (e.g.,
difficulties with speech, chewing, or swallowing) and disfigurement
may interact to compromise perceived body integrity.
Disfigurement can be measured by physician ratings,
self-ratings, or objective scales.8 Diverse methods can enhance
convergent validity, but discrepant findings are difficult to inter-
pret. Methodologic differences may account for inconsistencies in
the literature.
Stigma
Stigma is characterized by exclusion, rejection, blame, or devalu-
ation due to experienced or anticipated adverse social judgment
based on an enduring feature of identity, such as can be conferred
Chapter14 head and neck cancer 93
by a health problem, even when unwarranted. Stigma has long
been associated with cancer, dating back to early beliefs in its ori-
gins as a sexually transmitted disease. Although most cancers are
no longer believed to derive from such etiologies, those believed to
be attributable to ones actions are more highly stigmatized than
those independent of lifestyle or behavior.9
Cancer-related stigma is associated with compromised psycho-
social well-being, constrained interpersonal relationships, limited
financial opportunities, and reduced access to treatment.9 It often
leads people to delay seeking medical attention. It can complicate
treatment and compromise prognosis. In view of its association
with risk-inducing behavior (e.g., smoking and alcohol abuse) and
with prominent disfigurement, a high degree of stigma may be
expected in HNC, but this has rarely been tested. In the only study
of stigma and subjective well-being in HNC, long-term laryngeal
cancer survivors reported that stigma attributable to laryngec-
tomy and the stoma correlated with reduced life happiness and
increased depressive symptoms.10 Stigma and negative HNC ste-
reotypes lead people to distance themselves from identifying with
the disease.11
Illness Intrusiveness
Illness intrusiveness entails the disruption of lifestyles, activi-
ties, and interests due to disease and/or treatment.12 It mediates
the effects of disease and treatment on subjective well-being and
QOL. Illness intrusiveness exerts its effects by reducing (a)posi-
tive outcomes (e.g., pleasure, satisfaction) derived from valued
activities; and (b)personal control. Illness intrusiveness is mea-
sured by the Illness Intrusiveness Ratings Scale13 and has been
studied in numerous diseases, including HNC and other can-
cers. It is consistently associated with decreased psychological
well-being and increased emotional distress. Disease (e.g., pain,
fatigue, disability) and treatment factors (e.g., time required for
treatment, disruptive treatment schedules, aversive side effects,
and amelioration of symptoms) influence psychosocial outcomes
indirectly through their effects on illness intrusiveness. Symptom
burden likely contributes importantly to illness intrusiveness in
HNC, too, but this remains untested.
Psychological, social, and contextual factors modify the level
of illness intrusiveness that results from similar circumstances.12
Individual characteristics associated with high illness intrusive-
ness include young age and low income. Advanced education is
associated with high illness intrusiveness in relation to the instru-
mental domains of life (e.g., work, financial situation) and rela-
tionships and personal development (e.g., family or other social
relationships, self-expression), but not intimacy (e.g., relation-
ship with partner, sex life). The context in which cancer occurs,
including independent, stressful life events, also influences illness
intrusiveness.
Research, to date, identifies five factors that modify the psycho-
social impact of illness intrusiveness:stigma, self-concept, gender,
age, and culture.
Psychosocial and Psychiatric Outcomes
Distress is common in cancer and most often represents a final
common pathway through which multiple risk and protective
factors exert their effects.14 Given the stakes, the invasiveness of
diagnostic procedures, and the considerable duration of time that
often intervenes between medical testing and receiving definitive
94 Section IV psychological issues related to site of cancer
results, the medical workup can be especially threatening. Anxiety,
depression, suicide, and marital functioning are the most widely
studied psychosocial consequences of HNC. Symptoms of depres-
sion most often reflect a cumulative, delayed response to multiple
stressors and burdens associated with cancer and its treatment.14
Clinically significant depressive symptoms occur two to three
times more frequently in cancer and other major medical condi-
tions than in the general population.15 Among people with HNC,
16%20% meet criteria for adjustment disorder, minor depres-
sion, or major depression; these rates are higher than in the gen-
eral population, although disproportionately due to the less severe
depressive disorders.16
Severe physical distress and dysfunction are among the stron-
gest predictors of depressive symptoms.17 A variety of individ-
ual, social, and contextual factors co-determine cancer-related
distress. These include social support, attachment security, low
spiritual well-being, and young age.14 There is no evidence that
emotional distress or depressive symptoms differ between the
sexes in HNC. Tumor stage, number of physical symptoms,
pre-treatment depression, and avoidant coping are associated
with depression in HNC treated with radiotherapy and surgery.
Symptoms of anxiety may be as common as symptoms of
depression in HNC. Anxiety symptoms may be triggered by
numerous disease- and treatment-related threats and concerns.
One that is specific to HNC is the use of a face mask during
radiation treatment, which may trigger anxiety or panic associ-
ated with claustrophobia. Such symptoms may require adjunctive
anxiolytic medication or relaxation techniques so that treatment
canproceed.
Psychological distress in HNC may be modified by individual
premorbid behaviors and characteristics and by the effects of dis-
ease and treatment. Contrary to expectation, for example, dis-
figurement is not consistently associated with distress in HNC.5
Adverse emotional impact due to disfigurement appears most
likely when people have little social support5 and when illness
intrusiveness is high and they feel stigmatized.10 Alcohol use
and tobacco use, common in people with HNC, increase the risk
of depression.18 Suicide rates are mildly elevated in all cancers,
but occur more often in HNC than many other cancer types.19
Increased risk is associated with HNC, myeloma, advanced dis-
ease, low social or cultural support, and limited treatment options.
The high prevalence of distress and suicide in HNC supports
calls for routine distress screening. Brief, psychometrically sound,
self-report instruments can be integrated into routine clinical
practice, but test results must activate specific psychosocial inter-
ventions to be effective.
Impact on Couples
The literature indicates high levels of health-related quality of
life (HRQOL), overall, for patients and their partners, but part-
ners typically report lower QOL and more frequent psychiatric
problems. Unfortunately, research to date confounds gender with
patient-partner status:Almost all of the partners in these stud-
ies are female, muddying the interpretation of results. As com-
pared to men with HNC, their wives report greater distress and
more frequent anxiety disorders. The role of marital satisfaction,
too, appears to differ between male patients and their wives:The
quality of the marital relationship is a more powerful QOL deter-
minant for wives, whereas physical complaints (i.e., symptom
burden, dysfunction) influence QOL more powerfully for their
husbands with HNC. In part, this reflects that women are gener-
ally more likely than men to assume the psychosocial burden of
a partners ill health. Both husbands and wives are increasingly
required to suspend personal pursuits and assume the role of
caregiving.
QUALITY OF LIFE AND HEALTH-RELATED
QUALITY OF LIFE
Quality of life (QOL) is a global concept, conceived to reflect the
totality of human well-being, including (but not limited to) physi-
cal, psychological, social, economic, and spiritual domains. The
notion of health-related quality of life (HRQOL) addresses QOL as
it is affected by disease and treatment. When oncology treatment
is curative in intent, preservation of HRQOL is fundamental to
success because the aim is to restore health. Protection of HRQOL
is also central when the treatment aim is palliative because this
cannot be achieved without satisfactory QOL. The study of
HRQOL can also inform treatment selection, decision-making,
and health policy.
Measuring QOL in HNC
Psychometrically sound instruments are available to measure
HRQOL among people affected by HNC. Generic instruments tap
domains that are relevant across the spectrum of cancers. In some
cases, complementary modules assess HRQOL elements that are
unique to HNC.20
Descriptive Studies
Numerous studies have described HRQOL in HNC. Many are
retrospective, and their validity is threatened by the lack of ran-
domization and experimental control. A number of studies,
however, involve more rigorous, prospective-longitudinal experi-
mental designs in which a cohort, diagnosed with and treated for
specific HNC diagnoses, is identified (typically at diagnosis or
pre-treatment) and followed throughout treatment and, in some
cases, long after treatment ends. These studies provide useful
descriptions of the course of psychosocial adjustment that can
inform the types and timing of psychosocial interventions.
Retrospective studies typically focus on homogeneous patient
samples with regard to cancer site, but usually combine cases
across stages of disease and durations of treatment. These stud-
ies indicate generally positive HRQOL following treatment for
HNC. Generic instruments demonstrate positive outcomes (e.g.,
psychosocial well-being), but disease-specific measures (e.g.,
emphasizing physical function) indicate modest deterioration.
Low HRQOL is associated with fear of recurrence. People with
laryngeal cancer may be at increased risk for compromised QOL
due to the extent and severity of side effects, most notably the loss
of natural speech and disfigurement. Further research is needed,
however, to substantiate these effects.
Prospective Studies
Prospective studies offer a more rigorous description of the natu-
ral history of HRQOL over the course of HNC and its treatment
because participants serve as their own controls. Despite daunting
logistical challenges and intensive resource requirements, there are
a number of such studies. Many track HRQOL over the first year of
 Chapter14 head and neck cancer 95

treatment, whereas others provide longer post-treatment follow-up
(e.g., up to five years). Although many studies are limited by small
sample sizes, some boast substantial numbers. Overall, HRQOL
deteriorates during the first three months following diagnosis while
people undergo treatment. Negative documented effects are limited
largely to the domains of physical symptoms and treatment side
effects, but these often lead to corresponding psychosocial changes.
In most cases, HRQOL returns to or approximates pre-treatment
levels by the one-year milestone. HRQOL typically remains stable
thereafter. HRQOL significantly predicts survival when tested five
years post-treatment.21 Considerable debate addresses the relation
between more general QOL (e.g., subjective well-being and/or emo-
tional distress) and survival. At least four studies have examined
this issue in HNC, but results have been inconsistent. It will be
important to control effectively for relevant prognostic factors (e.g.,
comorbid disease) before this issue can be resolved.
allowed comparisons of outcomes across therapies. Most studies,
however, employ HNC-specific instruments. Because these are
heavily weighted with items that tap common symptoms and side
effects, findings are compromised by measurement redundancy.
In those cases where more generic HRQOL instruments comple-
ment disease-specific measures, a more convincing case can be
made for psychosocial effects. Although these clinimetric instru-
ments provide a meaningful snapshot of overall life functioning,
the conclusions drawn from research using them must be tem-
pered because of the lack of specificity of these instruments.
The vast majority of HNC patients appear to achieve good
long-term psychosocial adaptation, with no discernible HRQOL
impairment. However, observed differences are limited to the period
of active treatment and are generally limited to physical side effects
and functional limitations. It is not clear whether these results are
influenced by the effects of response shift or post-traumatic growth.

Determinants Psychosocial Interventions

A number of factors shape HRQOL in HNC. Factors identified,
to date, include (a)premorbid characteristics, including HRQOL,
socioeconomic status, functional status, and dispositional opti-
mism; (b)tumor stage; (c)disabling treatment side effects (including
difficulties in speaking, swallowing, chewing, and eating, as well as
dry mouth and taste disturbances); (d)smoking and problem [alco-
hol] drinking; (e)pain; (f)depression; and (g)fear of recurrence.
Evaluating Treatment Outcome and Comparing
Alternative Treatments
Many funding agencies require cancer-treatment trials to include
HRQOL as an outcome of interest, which has generated informa-
tion about the effects of cancer treatment on HRQOL and has
HNC requires a coordinated, multidisciplinary treatment
approach that optimally includes oncology, surgery, radiation,
psychosocial care, speech and language pathology, occupational
therapy, physiotherapy, nutrition, and dentistry. Psychological
support should be provided, along with attention to all of the
physical and functional problems that may occur as a result of the
disease and its treatment.
Although HNC is widely known to introduce significant adaptive
challenges and psychosocial stressors, comparatively little research
has tested interventions to facilitate psychosocial adaptation in this
patient population.22 Table 14.1 provides brief descriptions of psy-
chosocial interventions in HNC that have appeared in the literature
since publication of the previous edition of this textbook.

Table14.1 Recently Advanced Psychosocial Interventions to Facilitate Adaptation to HNC

Intervention Description Comments

Tailored patient The Multimodal Comprehensive Tailored Information
education Package23 provides (a)a patient booklet (medical information);
(b)an interactive computer program (information about the
site, stage, and other details specific to the recipients disease
and treatment); (c)computer animation; (d)a take-home
DVD concerning HNC care; and (e)a database to capture
specific patient-information to facilitate patient-professional
communication.
Cognitive-behavior Adapted for HNC24 from programs to treat trauma and
therapy (CBT) comorbid depression. Includes (a)psychoeducation about
HNC and related stressors; (b)breathing and muscle relaxation;
(c)vicarious exposure to distressing cancer-related memories;
(d)graded in vivo exposure to cancer-related stressors;
(e)cognitive restructuring; and (f)behavioral activation. Two
booster sessions prevent relapse.
CBT Face IT25 provides eight sessions addressing social skills to manage
difficulties associated with visible disfigurement. Sessions introduce
(a)exposure-based techniques (including progressive relaxation)
to master social anxiety; (b)goal-setting and social-skills training
to buildnew support networks; and (c)cognitive restructuring to
address negative automatic thoughts about ones appearance and
about others opinions in relation to disfigurement.
Anxiety decreased at 3- and 6-months post-intervention, but
increased in no-treatment controls.
Benefits were tempered by increasing depressive symptoms over
the same period (more dramatic increases in control group).
Providing tailored information might be more helpful if
accompanied by an action plan to apply the information.
No significant differential improvement over time for CBT vs.
nondirective supportive-counseling. All participants improved
over time.
Participants limited to highly distressed people; therefore
enhances likelihood of detecting meaningful benefits.
Results may reflect effects of insufficient statistical power
(N=35) and/or greater-than-anticipated benefits of supportive
counselling.
Online computer-based and face-to-face versions reduced
anxiety, depression, and concerns about disfigurement; they
increased positive adjustment.
Participants did not include HNC, but the intervention is highly
relevant and merits consideration.
(continued)
96 Section IV psychological issues related to site of cancer

Table14.1(Continued)

Intervention Description Comments

Telephone-based Easing and Alleviating Symptoms during Treatment (EASE)26 Research has established feasibility and acceptability.
stress-management aims to facilitate adaptive appraisals of stress and active coping, Most recipients expressed considerable satisfaction.
to reduce emotional distress, and to increase self-efficacy
related to symptom management. It includes up to eight
telephone-counseling sessions delivered during cancer
treatment. Sessions coincide with significant clinical
milestones(e.g., diagnosis, active treatment, and end of
treatment). Number of sessions is determined by the length
oftreatment. EASE was tailored and adapted for HNC.
Prophylactic Antidepressant medication may prevent the onset of major Case-depression status was based on symptom-severity alone.
pharmacotherapy depression in HNC. When used prophylactically, one agent Therefore, findings may not be generalizable to case status as
(escitalopram, a selective serotonin reuptake inhibitor) was defined by routine psychiatric criteria (e.g., DSM-5).
effective in reducing depressive symptoms in a double-blind
placebo-controlled randomized controlled trial. 27 The
pharmacotherapy group also reported superior HRQOL.
Adverse-events rates did not differ between medication and
placebo recipients.
Stepped care All people receive a common low-intensity treatment, and only Currently under investigation.
those who do not benefit sufficiently step up to a more intensive
treatment.
One stepped care intervention28 includes four evidence-based
treatment steps:(a)watchful waiting; (b)guided self-help via
internet or booklet; (c)problem-solving training by a specialized
nurse; and (d)specialized psychological intervention or
antidepressant medication.
A second29 targets all cancer subtypes. Component interventions
include (a)one initial counseling session and subsequent
distress-assessment. When necessary, these are followed by
(b)stress-management training, including education about stress and
its deleterious effects and encouragement to increase physical activity.
MaxLife:Minimizing Patient education and behavioral self-management to minimize Adapted from a longer version (10 sessions, two follow-ups)
illness intrusiveness to illness intrusiveness to preserve quality of life. Patient workbook that proved impractical for many people with HNC attending a
getthe most out provides didactic content and worksheets to record behavioral tertiary-care cancer center in a large urban center.
of life30 homework. Currently under investigation.
Initiated as soon possible after diagnosis. Four core sessions
address (a)the illness intrusiveness theoretical framework as
applied to HNC and its treatment, medical and treatment
information, and communication with the treatment team;
(b)speech and swallowing as affected by HNC and how to
manage problems; (c)self-management of cancer-related pain,
insomnia, and fatigue; and (d)stress and stress-management,
including stress-inoculation.
Three elective sessions address (a)identifying and challenging
unhelpful thoughts; (b)communication and social support; and
(c)disfigurement and dealing with others reactions.
Concludes with one-month follow-up session.

Note: All of the interventions described in this table have appeared in the literature since the previous version of this chapter was published.

diminished treatment-related side effects, but survival rates have

CONCLUSION
HNC imposes significant adaptive challenges and coping
demands, both for patients and for their loved ones. The threat and
burden associated with many cancer subtypes are compounded in
this disease by unique treatment demands, disturbing symptoms
and side effects, and their psychological effects. Improvements
in medical, surgical, and radiation treatments have significantly
not improved dramatically over the past few decades. Emotional
distress, anxiety, and depression occur in a substantial minority
of people with HNC, adverse effects on spouses and marital rela-
tionships can be significant, and suicide rates are higher than in
many other cancers. An active approach to multidisciplinary care,
routine distress screening, and referral of those in need for spe-
cialized psychosocial care may improve outcomes.

Research suggests that HRQOL is often restored to pre-treatment
levels by the end of the first year post-treatment. Further research
is needed, however, to determine whether and to what extent these
positive findings reflect a return to premorbid states, response
shift, post-traumatic growth, or methodologic artifacts. Symptom
burden, disfigurement, stigma, and illness intrusiveness con-
tinue to impose significant psychosocial strain for many people.
Unfortunately, there remains a dearth of empirically tested inter-
ventions that are specific to or have been evaluated in HNC. The
relative neglect of the psychosocial research in this patient popula-
tion is an important gap that must be redressed. People with HNC
face unique and substantial challenges. The active support of a mul-
tidisciplinary team is essential to their recovery and rehabilitation.
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 CHAPTER15
Gastrointestinal and
Hepatobiliary Cancers
Virginia Sun and Robert S.Krouse
The most common new cases of gastrointestinal (GI) and hepa-
tobiliary cancers in the United States are colorectal cancer (CRC;
136,830), followed by gastro-esophageal (GE; 40,390) and pancre-
atic (46,420).1 CRC typically presents earlier and has greater sur-
vival, while other GI and hepatobiliary tumors are more insidious
in presentation and carry a worse prognosis. As with all cancers,
there is great stress associated with diagnosis. For GI and hepato-
biliary cancers, this will be greatly associated with the site of the
tumor, as well as the histological type and stage.
Health-related quality of life (HRQOL) issues and psychosocial
adjustment due to impairment of GI function must be considered
with GI and hepatobiliary cancers. This may impact the patient
as well as his or her family, and can lead to isolation, depression,
anxiety, and an alteration in family dynamics around mealtime,
which is integral to normal familial functioning. Thus, the social
and cultural context in which patients and their families must
cope with GI and hepatobiliary cancers is of psychosocial rel-
evance. Other issues that may lead to patient and familial concern
include multiple symptoms, and interdisciplinary care is impera-
tive to ensure the best approach to managing these symptoms.
Box 15.1 presents symptoms that are more commonly associated
with GI and hepatobiliary cancers, which can all result in high
levels of psychological distress.
CANCER OF THE ESOPHAGUS
ANDSTOMACH
Overview of Symptoms, Treatment, and Survival
Tumors of the esophagus and stomach can be grouped together in
consideration of HRQOL and psychosocial implications for sev-
eral reasons, including (1)poor prognosis, (2)anatomic proxim-
ity, and (3)relationship to the ability to eat and its repercussions
on HRQOL. Incidence of esophageal (18,170) and gastric (22,220)1
cancer in the United States may be less common than in other
parts of the world, but adenocarcinomas of the esophagus and
proximal stomach are rapidly increasing, especially among white
males. As GE tumors are frequently diagnosed late, long-term
survival is frequently poor. Recurrence rates are high (up to 66%
for esophageal cancer; 80% for gastric cancer), 24 and five-year
survival is low (18.1% for esophageal cancer; 28.8% for gastric
cancer).5
Common symptoms and signs related to GE tumors are often
nonspecific and may lead to a long prodrome before diagnosis (see
Box 15.1).6 Treatment options will revolve around the extent and
the site of disease. If metastasis or invasion of local structures is
noted, surgical extirpation is unlikely. While detailed descriptions
of operative approaches are beyond the scope of this chapter, they
include a major abdominal procedure, and esophageal cancers
will frequently necessitate incisions in the chest or neck. The addi-
tion of chemotherapy and radiation may provide an improvement
in local recurrence and survival for GE cancers. For gastric gas-
trointestinal stromal tumors (GIST), wide margins or extensive
lymphadenectomy is unnecessary. Therefore, unless the tumor is
quite large, necessitating removal of a majority of the stomach,
the long-term sequelae of a gastric procedure is usually minimal.
Chemotherapy is more tolerable and often prolonged, and radia-
tion is unlikely to be offered.
HRQOL and Psychosocial Implications
The major goal in the treatment of GE cancers is to enable the
patient to eat. In esophageal and GE junction tumors, surgery can
lead to long-term ability to eat and improved HRQOL, even in the
setting of palliative resection, 2 but may not be offered due to bulk
of disease at presentation or progression on preoperative therapy.
In an unresectable gastric cancer, a bypass procedure may not lead
to the intended goal of prolonged ability to eat.3 While the type of
surgical procedure does not appear to impact HRQOL, different
types of gastric resection may affect eating behavior and physical
and emotional functioning.3 For example, dumping syndrome is
more common with a distal gastrectomy, and reflux is more com-
mon if the GE junction is included in the specimen. These prob-
lems may lead to depression and other HRQOL problems. The
benefits of chemotherapy are less clear with metastatic disease
than in the adjuvant setting, and this may affect a patients psy-
chological status, especially if there were issues before diagnosis.
The complication of leak is more common for esophageal resec-
tions (14%16%) than gastric resections (0%12.7%).7 This will
typically resolve with drainage and jejunostomy feeding. If no
complications arise, patients may go home soon after they begin
to eat if there is appropriate home support. As with all major pro-
cedures, the presence of diminished stamina for some time is an
expected consequence for many patients, especially as many are
 Chapter15 gastrointestinal and hepatobiliary cancers 99

as the familys adjustment to fundamental changes in everyday life.

Box 15.1 Common Symptoms in GI and Hepatobiliary Cancers
In the case of severe emotional distress, psychiatric consultation is
warranted to provide diagnosis and management by psychothera-
Cancer of the Esophagus and Stomach
peutic and pharmacological intervention. As survival is frequently
Weight loss limited, hospice care should be anticipated for all patients with
Dysphagia GE tumors. Palliative care in gastric cancer is commonly related
to obstruction and bleeding. Interdisciplinary approaches should
GE reflux
be considered in both of these instances. Related to obstruction,
Chest and upper abdominal pain a bypass may not provide optimal results.8 Endoscopic metallic
Fatigue
stents are an effective and feasible method of palliation for both
gastric and esophageal tumors.9 For bleeding, there are also sev-
Early satiety eral alternative approaches to an operation, including radiation
Cancer of the Colon andRectum therapy and angiography with embolization.10,11 Relatively low
Change in bowel habits (diarrhea, constipation) doses of radiation will often eliminate bleeding for the life of the
patient. Finally, one may consider an endoscopic approach. While
Rectal bleeding this may not be practical or useful, it may slow or stop bleeding at
Anorexia least temporarily.
Weight loss
Abdominal pain
CANCER OF THE COLON AND RECTUM
Cancer of the Pancreas
Overview of Symptoms, Treatment, and Survival
Colorectal cancer is the most common site of GI tumors (96,830
Jaundice
for colon and 40,000 for rectal cancer).1 Overall occurrence of
Pain CRC is nearly equal for men and women.1 Owing to common
Weight loss early detection measures, many of these tumors present in early,
curable stages. Adenocarcinoma is the most common histologi-
Delayed gastric emptying cal type of CRC, and other types, such as carcinoid or GIST, are
Difficulty digesting foods comparatively rare. The overall five-year survival of CRC is 65.5%,
which is nearly identical for colon (64.8%) and rectal (67.1%) can-
Hepatocelluar Carcinoma
cers.5 While treatments for CRC have rapidly improved, advanced
Ascites stage disease still portends a poor survival.
Variceal bleeding Treatment approaches to CRC depend primarily on the site of
the tumor. If the tumor is at the rectosigmoid junction or proxi-
Peripheral edema
mal, surgical approaches are the initial and possibly only treat-
Hepatic encephalopathy ment. Postoperative chemotherapy is dependent on the stage of
Jaundice tumor. Rectal cancer will often involve neoadjuvant chemoradia-
tion therapy as well as resection, which is advised for T3 or N1
tumors to help preserve anal sphincters and lower local recur-
elderly. The most common long-term problem after esophageal rence. If a patient does not have adequate anal sphincter func-
resection, especially if there is a leak, is an esophageal stricture. tion preoperatively, no attempt is made to save the sphincters.
As local recurrence will also cause similar symptoms related to Postoperative radiation still has utility in efforts to minimize local
blockage while swallowing, this may lead to anxiety until the recurrence.
etiology is confirmed. In addition, persistent postoperative pain The two most common surgical treatments for rectal cancer
syndromes will require careful consideration to rule out cancer include abdominoperineal resection (APR; resection of the rec-
recurrence. The most common treatment for benign stricture is tum and anus with permanent ostomy) and low anterior resec-
dilatation, which will be uncomfortable and will produce anxiety. tion (LAR; anastomosis of bowel with or without a temporary
If the problem is prolonged, depression may also occur. protective ostomy). If the tumor involves adjacent organs (e.g.,
Short- and long-term follow-up is imperative, especially for bladder), partial or total resection of these organs may be indi-
patients who have had major resections of their esophagus or cated. If tumors are a very early stage (T1), local excision may be
stomach. Frequently, problems such as reflux can be managed sim- offered. The recurrence rates may be as high as 17%, but it is rea-
ply with antacids, positional changes when sleeping, or sedatives. sonable to consider, as the morbidity is much less and long-term
Alcohol dependence, which is a risk factor for esophageal cancer, HRQOL better. Of all rectal cancer patients, 10%35% require a
must be considered by clinicians in terms of potential postop- permanent ostomy.12,13 Temporary stomas are not well reported,
erative withdrawal. Rehabilitation is often fully achieved within and may represent 8%33% of those that undergo anastamosis.13
a few months, but the return to work may take longer. In addi- There is a population of patients whose anastomoses fail and who
tion, long-term complications can be addressed promptly to avoid go on to get a permanent ostomy. This is most likely due to poor
inability to sleep, weight loss, anxiety, and depression. Enlisting anal function, anastomotic leak, stricture, fistula, or recurrence.14
the support of the family is crucial in all phases of treatment in While a known issue, this is not well described in the literature.
assisting the patients emotional and social rehabilitation, as well In one report, 8% of patients who had temporary ostomy did not
100 Section IV psychological issues related to site of cancer
have their ostomy reversed.15 Advances in sphincter-preserving
techniques are also allowing more patients to avoid a permanent
ostomy. There are variations of approaches to attempt to minimize
bowel movements and improve function after a low anastomosis.
The treatment approach is tailored on the basis of multiple factors,
including site, depth of invasion, and size of tumor, the surgeons
training and experience, anal tone, and patient health status; the
major consideration is the distance from the tumor to the anal
verge. Surgery on the sigmoid colon may carry some of the risks of
LAR as procedures (dissection, resection, and anastomoses) fre-
quently enter the rectum.
HRQOL and Psychosocial Implications
HRQOL issues for patients with CRC depend greatly on the stage
of cancer and the site of tumor. Therefore, it is important to con-
sider colon cancer and rectal cancers separately. For colon cancer,
the site of the tumor, the amount of colon excised, the urgency
of the procedure, and stage all play a role in HRQOL issues.
Right-sided tumors will mandate the removal of the ileocecal
valve, which limits effluent into the colon. Therefore, removal of
this structure may lead to watery to soft bowel movements. This
will typically resolve with time, but not for all patients. If a total or
near total colectomy or proctocolectomy is mandated, there will
be less water absorption capacity, leading to multiple loose bowel
movements per day. While this may resolve partially or totally
with time, it is often long-lasting or permanent. In urgent opera-
tive settings (i.e., obstruction, perforation, or bleeding), the likeli-
hood of a temporary or permanent ostomy will be greater, and
hospital course is usually more difficult and can lead to further
rehabilitation and HRQOL issues. Overall, for most patients with
colon cancer, HRQOL will be similar to the general population
after recovery from treatments.16
Rectal cancer is much more likely to have long-term functional
and HRQOL effects due to the anatomic location of these tumors
and the differences in treatment approaches. Among rectal cancer
patients, there is a commonly held conviction that patient HRQOL
is improved with anastomosis versus permanent ostomy. Patients
undergoing both LAR and APR experience frequent or irregular
bowel movements and diarrhea, which can result in isolation from
a decrease in social activities outside the home. In a Cochrane
review, authors examined all controlled or observational clini-
cal trials in which a well-known, validated, reliable multidimen-
sional quality of life (QOL) instrument was used.17 Six studies
found that ostomy patients did not have a worse QOL, one found
slightly worse QOL, and four found a significantly worse QOL.
The authors concluded that existing observational studies do not
allow firm conclusions as to the question of whether the QOL of
people after anterior resection (rectal-sparing surgery) is superior
to that of people after abdominoperineal excision (ostomy). The
included studies challenged the assumption that anterior resec-
tion patients fare better. More recently, a meta-analysis of QOL
for patients undergoing major rectal procedures found that there
were no differences in general QOL, although there were differ-
ences in several dimensions that make up HRQOL. They conclude
that an APR, which includes a colostomy, cannot be justified
on the grounds of QOL alone.18 This has been disputed in the
long-term (> 5 years) rectal cancer population, where multiple
dimensions of HRQOL were worse for survivors with ostomies.
Importantly, most differences were not highly significant, and
global HRQOL was not reported. For patients who are able to have
an anastamosis, functional issues are often a significant problem,
most commonly related to multiple bowel movements per day.19
Patients who have poor control of their bowel function may need
adult diapers. This can be a great stress for many patients, and may
lead to changes in eating habits, along with isolation and fear of
travel. Some patients may have strictures, which lead to problems
with constipation and may ultimately necessitate an ostomy.
Sexuality is an issue that may affect all rectal cancer patients.
While it is much more studied in men, it clearly affects women
related to libido and potentially anatomic problems such as vagi-
nal stricture.20 Decreased libido, vaginal lubrication, dyspareunia,
diminished orgasm, and less frequent or cessation of intercourse
can occur in more than half of the patients.20 While in a combined
population of cancer and non-cancer patients, females have dis-
played less sexual concerns than men; this was more of a problem
for younger women.20 For males, sexuality was impaired regard-
less of age. Age, tumor size, location and spread, surgical damage
of pelvic nerves, 21 as well as the patients and the partners emo-
tional coping, are the most important factors that contribute to the
large range of dysfunction reported across all studies. Impotence
rates vary from 15% to 92%.21 While the incidence of impotence is
less with newer surgical techniques, it is still significant. In addi-
tion, adjuvant therapies will increase sexual dysfunction. In fact,
it has been shown that the preoperative ability to have orgasm was
eliminated in 50% of both men and women with multimodality
rectal cancer treatment.21
Patients who are diagnosed with CRC at a younger age warrant
special attention, as more feelings of stigmatization are noted.
For patients with ulcerative colitis, it must be considered that
they frequently have psychological problems due to the emotional
effects of a long-standing chronic illness. Patients with polyposis
syndromes or other genetic predispositions to CRC may require
surgery at an early age, and consideration of their psychological
needs is imperative.
Patients with Ostomies
For patients with rectal cancer, the concern about a colostomy fre-
quently supersedes all other considerations. Box 15.2 provides a
list of common HRQOL issues for patients with permanent osto-
mies. Sutherland, in his classic study, found that ostomy patients
who had survived disease-free from rectal cancer for five or more
years showed considerable impairment in both social and sexual
function. 22 Depression, chronic anxiety, and a sense of social
isolation were frequently observed in patients with ostomies.
Patients also had difficulties in the practical management of the
colostomy.23 Ostomies have since been shown to be associated
with multiple HRQOL difficulties irrespective of the type or rea-
son for the ostomy, 24 including problems with appearance, dif-
ficulty paying for supplies, 25 skin or leakage complications, 26,27
interference with work, recreational, and sporting activities, 28 and
embarrassment due to issues such as leakage, odor, and noise.29
Persistent ostomy-specific concerns and adaptations are common
in long-term (> 5years) survivors.23 All of these factors may lead to
greater levels of depression and anxiety, along with greater prob-
lems with intimacy and isolation. Spirituality is likely influenced
by a stoma,30 and must be considered for patients having psycho-
logical problems postoperatively. Importantly, comorbidities may
actually have a greater impact on HRQOL than ostomies. 31
 Chapter15
Box 15.2 Common HRQOL Issues for Patients with Ostomies
Depression
Chronic anxiety
Social isolation
Sexuality
Self-management of colostomy
Leaks and spillage
Odor
Embarrassment due to odor, leakage, and noise
Comorbidities
Body image and appearance
Financial difficulties in paying for ostomy supplies
Skin problems
Interference with work and social activities
Clothing restrictions
Dietary concerns
Constant need to adjust to living with an ostomy
Spiritual concerns
As stated previously, sexuality and sexual dysfunction can play
a large role in the psychosocial health of CRC survivors, including
those with an ostomy. The presence of an ostomy for males may
be associated with lower rates of sexual activity and higher erec-
tile dysfunction.32 In addition, lower rates of sexual activity and
satisfaction significantly correlated with social and psychological
dimensions of HRQOL.24 Patients with ostomies are more likely to
have negative feelings about their body appearance, 33,34 which can
lead to diminished intimacy and greater isolation. Intimacy con-
cerns are not only related to the patients, but ostomies also affect
spouses and other partners. Persson et al.35 found that spouses
(1)had difficulty with the partners altered body, (2)reported feel-
ing distant from their partners because of the distress caused by
the stoma surgery, (3) reported difficulty looking at the stoma,
and (4) struggled to hide feelings of disgust. Twenty-three per-
cent indicated that their partner responded negatively during the
first sexual experience after ostomy surgery, and 30% stated that
their partner reacted with much caution, fearing they would hurt
thestoma.35
Approximately 20% of stoma patients (mixed diagnoses)
experience a serious level of psychiatric disturbance during the
first year, and the vast majority of disturbance occurred during
postoperative recovery.36 Areport comparing veterans with sto-
mas (50% with CRC) to those who had similar procedures but
did not require an ostomy found more patients with stomas felt
depressed (52% vs. 36%) or suicidal (12% vs. 5%) in the postop-
erative period.24 Difficulty coping with the stoma initially and at
three months after surgery is a greater determinant of psychiat-
ric disturbance over the first year than difficulty in coping with
the illness.36 Factors associated with increased risk of psychiatric
disturbance were past psychiatric history, postoperative physical
symptoms and complications, perceived inadequate advice after
surgery regarding the stoma and its functioning, as well as traits
of neuroticism, anxiety, and obsessionality.36
The patient who is unable to decide to undergo surgery
may be helped by meeting and talking with an ostomate. The
gastrointestinal and hepatobiliary cancers 101
postoperative period is smoother and emotionally less distress-
ing when it follows adequate preoperative preparation. 37 An indi-
vidual assessment (e.g., misconceptions) and teaching on practical
issues are important. Equipment options must be discussed. In
addition, the placement of the stoma is given attention to take
into account skinfolds and patient preference (e.g., with regard
to clothing). Enterostomal nurses can have great impact on pre-
operative understanding of stomas and postoperative rehabilita-
tion. Preoperative psychological preparation may reduce anxiety
and stress to aid recovery.37 In addition to this goal, preoperative
ostomy site marking can eliminate problems related to clothing
and care that will lead to poor psychosocial outcomes. In the
postoperative setting, improved self-efficacy may ease the burden
of ostomy, which may help with reducing stress and may lead to
greater independence.37
CANCER OF THE PANCREAS
Overview of Symptoms, Treatment, and Survival
The pancreas is the second most common site of GI tumors and
the fourth leading cause of cancer death in adults in the United
States.1 The overall male to female ratio is equal. The most com-
mon type of pancreatic cancer is ductal adenocarcinomas. Even
with improved surgical techniques, the median survival for late
stage disease is still only between four and six months; overall
survival is 6.5% at five years. 5 This is largely because a major-
ity of patients have locally advanced or metastatic disease at
diagnosis.
The only treatment with a curative intent includes surgical
resection. The indicated procedure is based on the location of
the tumor. Most commonly, this will entail a pancreaticoduode-
nectomy (the Whipple procedure), which includes resection of
the duodenum, head of pancreas, common bile duct, gallblad-
der, and frequently the distal stomach. If the tumor is in the
distal or body of the pancreas, the most common procedure is
a distal pancreatectomy, often including the spleen in the resec-
tion specimen. Five-year survival with pancreaticoduodenec-
tomy also is 0%11%. 38 Multiple adjuvant chemoradiation has
been noted to improve survival to 10%19%, and 45% in one
series. 39 In a Phase III clinical trial, the chemotherapeutic regi-
men FOLFIRINOX (5-FU/leucovorin plus oxaliplatin and irino-
tecan) showed dramatic improvements in both overall survival
and median progression-free survival when compared to the gold
standard of gemcitabine alone.40 This regimen carries a great bur-
den of treatment-related morbidity, including grade 3 or 4 neu-
tropenia, diarrhea, thrombocytopenia, and sensory neuropathy.40
Morbidity from pancreatic surgical procedures is common, and
complications include wound problems and leaks from the pan-
creatic anastomosis, diabetes, digestion issues, and delayed gastric
emptying (see Box 15.1). While diabetes can be controlled with
medications and oral pancreatic enzyme replacement manages
digestion problems, delayed gastric emptying may be quite dis-
tressing and unlikely to respond to medicines.
There are multiple palliative procedures for pancreatic can-
cer. Currently, biliary stenting is the primary treatment for
obstruction. While it has greater recurrence rates than surgi-
cal bypass, stenting has less morbidity. Stenting can also be
used for gastric outlet obstructions with great efficacy. If an
operation for curative intent is aborted due to determinations
102 Section IV psychological issues related to site of cancer
of unresectability, a biliary bypass may be undertaken at that
time. As late gastric outlet obstructions may occur if a patient
has either a stent placed or a bypass in 8%41.4% of patients, 38
it should also be considered if a patient is undergoing a biliary
bypass. 38
HRQOL and Psychosocial Implications
Depression has been associated with pancreatic cancer before
diagnosis.41 Early clinical case reports described a triad of depres-
sion, anxiety, and premonition of impending doom. Depression
and other psychological difficulties have since been confirmed
to be more common in pancreatic cancer than other malignan-
cies.42 Owing to the other constellation of problems related to
pancreatic cancer, depression may be overlooked. The range of
depression in pancreatic cancer patients is 25%75%, and suid-
cial ideation may be up to 17%.43 Symptoms such as persistent
dysphoric mood, hopelessness, anhedonia, and suicidal ideation
are clear markers of depression. Previous history, drug history,
and family history increase the risk of depression. While depres-
sion is common, it does not appear to affect survival.43 Symptoms
of psychological distress are confounded by pain associated with
pancreatic cancer, which clearly affects HRQOL and function. As
80% of pancreatic cancer patients present with metastatic disease
at diagnosis, 5 palliative care is of primary importance. Given the
poor outlook in terms of survival and the burden of increasing
symptoms, management should focus on maximum comfort and
symptom control. The need for a multidisciplinary approach is
highlighted by the fact that the physical and emotional compo-
nents of psychological burden are inextricably mingled in these
patients.
Diagnosis and Management of Depression in
Pancreatic Cancer
It is imperative for practitioners to look for symptoms of depres-
sion and refer quickly to those with expertise in treating these
patients. It has been recommended that psycho-oncologists, or
psychiatrists who focus on cancer patients, should be involved to
help distinguish patients who are experiencing normal emotional
reactions from those patients with a true psychiatric illness need-
ing more extensive treatment. These may include psychotherapy,
cognitive-behavioral techniques, and psychopharmaceutical
agents. Tricyclic antidepressants are used most frequently to treat
depression in pancreatic cancer patients.44 These medications may
also help with pain control. Dosing should start low and increase
slowly due to sensitivity in this population. Nortriptyline should be
used if there is hepatic dysfunction. Selective serotonin-reuptake
inhibitors are typically also well tolerated and may have fewer
toxicities.
A common situation is one in which a patient shows depres-
sion and distress in the context of increasing pain. Pain clearly
impacts depression, and adequate pain control is mandatory in
treating depression in the pancreatic cancer patient.43 Nerve
blocks of the celiac plexus may be required and give good relief
in most patients.45 This can also decrease opioid use and dis-
turbing constipation.46 In addition to tumor-related pain, GI
symptoms, including anorexia, nausea, and vomiting, as well as
narcotic-induced constipation and fatigue, have a major impact
on patients psychological well-being.
HEPATOCELLULAR CARCINOMA
Overview of Symptoms, Treatment, and Survival
An estimated 33,190 cases of hepatocellular carcinoma (HCC)
will be diagnosed in the United States.1 Worldwide, HCC is the
fifth most common malignancy and causes approximately one
million deaths annually.47 Incidence rates in the United States
among ethnic groups are lowest in Caucasians, but increas-
ing rates are found in Japanese, African American, Hispanics,
Filipino, Chinese, and Korean populations.47 Five-year survival
rate is 17.4%.5 Treatments include transplant, ablation, surgery,
transarterial chemoembolixation (TACE), selective internal radi-
ation therapy (SIRT), and targeted therapies, and these modali-
ties often carry substantial physical and psychological impact on
patients HRQOL.
HRQOL and Psychosocial Implications
There are few studies that focus on the HRQOL and psychosocial
needs of patients with HCC. Patients may present with a variety
of symptoms related to decompensated cirrhosis (see Box 15.1).
Approximately 80%90% of patients treated with TACE experi-
ence a post-embolization syndrome, which includes abdominal
pain, fatigue, ileus, fever, nausea, and vomiting, and it can last from
hours to days.48 Although fatigue level gradually decreases two
days post-TACE, level of fatigue is higher six days post-treatment.49
Jaundice presents in 19%40% of patients at the time of diagno-
sis and usually occurs in later stages. Symptoms related to asci-
tes include increased intra-abdominal pressure, abdominal wall
discomfort, dyspnea, anorexia, early satiety, nausea and vomiting,
esophageal reflux, pain, and peripheral edema. 50 Psychological
symptoms, such as distress and depression, have been reported
in patients with late stage HCC. Incidence of psychological mor-
bidity, such as depression, is higher in individuals diagnosed with
HCC compared to other cancer diagnosis.51 Sexual functioning
was found to be poorer in HCC patients when compared to the
general population.52
INTERVENTIONS TO SUPPORT
PSYCHOSOCIAL WELL-BEING
There are few evidence-based interventions for managing psy-
chological distress in GI and hepatobiliary cancers. Beyond the
usual medical management of anxiety and depression, few psy-
choeducational or behavioral interventions have been tested
specifically in these cancer populations. Treatments often leave
patients scarred and disfigured, and this carries added psychoso-
cial burdens. Therefore, a potential approach in the development
of psychoeducational interventions for these cancer populations
is to focus on supporting patients in adjusting to the long-term
effects of treatment. For example, supporting patient efficacy in
self-management of permanent or temporary ostomy follow-
ing surgery can aid in fostering better adjustment to managing
an ostomy. 53 This in turn may lead to less psychosocial distress
for patients. Bowel function rehabilitation interventions can be
helpful in supporting positive long-term adjustments. There is
some evidence that points to the use of pelvic floor muscle train-
ing, sphincter exercises, biofeedback, and electrical stimulation
as potentially effective methods to manage bowel dysfunction,19
 Chapter15
but these interventions need to be tested for their efficacy in GI
cancers. Finally, the early integration of palliative care can be ben-
eficial for patients and families, and has the potential to improve
and sustain HRQOL.
CONCLUSIONS
GI and hepatobiliary cancers, while heterogeneous in presentation
and treatment, have a commonality regarding impact related to
nutritional status, eating, and bowel function. The social and psy-
chological implications of these functions are all-encompassing,
and it is paramount to focus on these issues as a priority toward
mental health. An interdisciplinary approach, including sur-
geons, medical oncologists, radiation oncologists, nurses, pain
specialists, palliative medicine, and mental health professionals,
is imperative to recognize and manage psychological difficulties
throughout the cancer trajectory.
ACKNOWLEDGMENT
The authors thank Mary Wagner for her insightful edits and
comments.
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on quality of life after sphincter-preserving resection for rectal can-
cer. Brit J Surg. 2013 Sep;100(10):13771387.
20. Schmidt CE, Bestmann B, Kuchler T, Longo WE, Kremer B. Ten-year
historic cohort of quality of life and sexuality in patients with rectal
cancer. Dis Colon Rectum. 2005 Mar;48(3):483492.
21. Zippe C, Nandipati K, Agarwal A, Raina R. Sexual dysfunction after
pelvic surgery. Int J Impot Res. 2006 JanFeb;18(1):118.
22. Sutherland AM, Orbach CE, Dyk RB, Bard M. The psychological
impact of cancer and cancer surgery. I.Adaptation to the dry colos-
tomy; preliminary report and summary of findings. Cancer. 1952
Sep;5(5):857872.
23. Sun V, Grant M, McMullen CK, etal. Surviving colorectal can-
cer:long-term, persistent ostomy-specific concerns and adaptations.
JWound Ostomy. 2013 JanFeb;40(1):6172.
24. Krouse RS, Grant M, Wendel CS, etal. A mixed-methods
evaluationof health-related quality of life for male veterans
with and without intestinal stomas. Dis Colon Rectum. 2007
Dec;50(12):20542066.
25. Coons SJ, Chongpison Y, Wendel CS, Grant M, Krouse RS. Overall
quality of life and difficulty paying for ostomy supplies in the
Veterans Affairs ostomy health-related quality of life study:an
exploratory analysis. Med Care. 2007 Sep;45(9):891895.
26. McMullen CK, Wasserman J, Altschuler A, etal. Untreated peristo-
mal skin complications among long-term colorectal cancer survivors
with ostomies. Clin J Oncol Nurs. Dec 2011;15(6):644650.
27. Pittman J, Rawl SM, Schmidt CM, etal. Demographic and clinical
factors related to ostomy complications and quality of life in veterans
with an ostomy. J Wound Ostomy. 2008 SepOct;35(5):493503.
28. Horner DJ, Wendel CS, Skeps R, etal. Positive correlation of employ-
ment and psychological well-being for veterans with major abdomi-
nal surgery. Am J Surg. 2010 Nov;200(5):585590.
29. Mitchell KA, Rawl SM, Schmidt CM, etal. Demographic, clini-
cal, and quality of life variables related to embarrassment in
veterans living with an intestinal stoma. J Wound Ostomy. 2007
SepOct;34(5):524532.
30. Bulkley J, McMullen CK, Hornbrook MC, etal. Spiritual well-being
in long-term colorectal cancer survivors with ostomies. Psycho-
Oncology. 2013 Nov;22(11):25132521.
31. Jain S, McGory ML, Ko CY, etal. Comorbidities play a larger role
in predicting health-related quality of life compared to having an
ostomy. Am J Surg. 2007 Dec;194(6):774779; discussion 779.
32. Symms MR, Rawl SM, Grant M, etal. Sexual health and quality of
life among male veterans with intestinal ostomies. Clin Nurse Spec.
2008 JanFeb;22(1):3040.
33. Ramirez M, McMullen C, Grant M, Altschuler A, Hornbrook MC,
Krouse RS. Figuring out sex in a reconfigured body:experiences of
female colorectal cancer survivors with ostomies. Women Health.
2009 Dec;49(8):608624.
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34. Altschuler A, Ramirez M, Grant M, etal. The influence of husbands
or male partners support on womens psychosocial adjustment to
having an ostomy resulting from colorectal cancer. J Wound Ostomy.
2009 MayJune;36(3):299305.
35. Persson E, Severinsson E, Hellstrom AL. Spouses perceptions of and
reactions to living with a partner who has undergone surgery for rectal
cancer resulting in a stoma. Cancer Nurs. 2004 JanFeb;27(1):8590.
36. Krouse RS, Grant M, Rawl SM, etal. Coping and acceptance:the
greatest challenge for veterans with intestinal stomas. J Psychosom
Res. 2009 Mar;66(3):227233.
37. Rust J. Care of patients with stomas:the pouch change procedure.
Nursing Standard. 2007 Oct 1723;22(6):4347.
38. Van Heek NT, De Castro SM, van Eijck CH, etal. The need for a
prophylactic gastrojejunostomy for unresectable periampullary can-
cer:a prospective randomized multicenter trial with special focus
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discussion 902895.
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Jan;5(1):113116.
44. National Comprehensive Cancer Network. Clinical practice guidelines
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celiac plexus neurolysis for pain due to chronic pancreatitis or pan-
creatic cancer pain:a meta-analysis and systematic review. Digest Dis
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46. Puli SR, Reddy JB, Bechtold ML, Antillon MR, Brugge WR. EUS-
guided celiac plexus neurolysis for pain due to chronic pancreatitis
or pancreatic cancer pain:a meta-analysis and systematic review. Dig
Dis Sci. 2009 Nov;54(11):23302337.
47. McCracken M, Olsen M, Chen MS, Jr., etal. Cancer incidence,
mortality, and associated risk factors among Asian Americans of
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Cancer J Clin. 2007 JulAug;57(4):190205.
48. Toro A, Pulvirenti E, Palermo F, Di Carlo I. Health-related quality of
life in patients with hepatocellular carcinoma after hepatic resection,
transcatheter arterial chemoembolization, radiofrequency ablation
or no treatment. Surg Oncol. 2012 Mar;21(1):e2330.
49. Shun SC, Chen CH, Sheu JC, Liang JD, Yang JC, Lai YH. Quality of
life and its associated factors in patients with hepatocellular carci-
noma receiving one course of transarterial chemoembolization treat-
ment:a longitudinal study. Oncologist. 2012 May;17(5):732739.
50. Cao W, Li J, Hu C, etal. Symptom clusters and symptom interference
of HCC patients undergoing TACE:a cross-sectional study in China.
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51. Steel JL, Geller DA, Gamblin TC, Olek MC, Carr BI. Depression,
immunity, and survival in patients with hepatobiliary carcinoma. J
Clin Oncol. 2007 Jun 10;25(17):23972405.
52. Steel J, Hess SA, Tunke L, Chopra K, Carr BI. Sexual function-
ing in patients with hepatocellular carcinoma. Cancer. 2005 Nov
15;104(10):22342243.
53. Grant M, McCorkle R, Hornbrook MC, Wendel CS, Krouse R.
Development of a chronic care ostomy self-management program. J
Cancer Educ. 2013 Mar;28(1):7078.
 CHAPTER16
Lung Cancer
Mary E.Cooley, Hermine Poghosyan, and Linda Sarna
INTRODUCTION
Despite advances in early detection and treatment for
non-small cell lung cancer that have been made within the last
decade, lung cancer remains the most common cause of cancer
mortality. Adiagnosis of lung cancer for most people is associ-
ated with a poor prognosis and results in multiple distressing
symptoms associated with the disease and the cancer-directed
treatment. As a result, adults with lung cancer continue to
have more unmet psychosocial needs and greater distress
than those with other cancers. The purposes of this chapter
are to provide an overview of prevention, early detection, and
treatment strategies, to highlight psychosocial issues, and to
suggest evidence-based strategies to address the needs of this
population.
EPIDEMIOLOGY
To have a context for understanding the psychosocial conse-
quences of lung cancer, it is important to address the enormity of
the problem both in the United States and worldwide. Lung cancer
is a global health issue affecting many women and men worldwide.
In 2012, nearly 1.6million people died of lung cancer worldwide,
with 936,051 of these deaths occurring in Asian countries, 353,723
deaths in Europe, and 187,712 deaths in North America. Lung
cancer accounted for 20% of all cancer deaths worldwide.1 In the
United States, lung cancer is the leading cause of cancer-related
death and exceeds deaths from breast, colon, and prostate cancers
combined. It is estimated that there will be 159,260 deaths from
lung cancer in 2014.2
The incidence of lung cancer worldwide reflects a pattern similar
to the mortality rate. In 2012, lung cancer was the most commonly
diagnosed cancer globally. There were 1.8 million people diag-
nosed with lung cancer with 1,045,695 of these in Asia, 410,220
in Europe, and 239,781 in North America. Lung cancer accounted
for 13% of all cancer cases worldwide, and approximately 58% of
lung cancer cases occurred in less developed countries. It is esti-
mated that there will be 224,210 new cases of lung cancer in 2014. 2
The overall burden of lung cancer continues to increase; from 2010
through 2030, lung cancer incidence rates are expected to increase
by 52% in the United States, which will be the third highest per-
centage of increase after stomach cancer (67%) and liver cancer
(54%). In 2030, it is projected that there will be 338,000 new lung
cancer cases in the United States.3
Lung cancer epidemiology varies by smoking status, age, gen-
der, and race/ethnicity. The rise and slight decline in the United
States in lung cancer incidence and mortality has paralleled
trends of cigarette smoking. It is now widely acknowledged that
cigarette smoking causes 85%90% of lung cancers.4 The risk of
death from smoking-related lung cancer is correlated with age of
initiation, the number of packs smoked, and the total number of
years that smoking persists. The majority of lung cancer occurs
in those 65years and older; however, about 2% of cases are found
in those younger than 45years. Lung cancer is a major womens
health issue. Beginning in the 1930s, the lung cancer death rate
rose rapidly among males, peaked in the 1960s and continued
to rise into the 1980s. Compared with men, the epidemic of lung
cancer among women started later and the lung cancer death
increased sharply in the late 1960s, mainly due to the increased
prevalence of cigarette smoking that peaked among women about
20years later.5
African Americans suffer from lung cancer more often than
other racial/ethnic groups. African Americans tend to have higher
lung cancer incidence and mortality rates and lower survival rates.
In fact, compared to white men, the age-standardized incidence
rate per 100,000 populations is 94.7 among African American
men and 82.9 among white men. The reasons for these disparities
are not entirely clear; however, differences in access to care, qual-
ity of healthcare delivery, and/or having an increased number of
comorbidities may play a role.2
Approximately 10%15% of people who develop lung cancer are
never-smokers. It appears that the proportion of never-smokers
diagnosed with lung cancer has been increasing over the past
30years from 15.9% in the 1970s to 32.8% in the 2000s.4 There is
discussion about whether lung cancer in never-smokers (LCINS)
is a separate entity. If LCINS were considered a separate entity, it is
the seventh largest cause of cancer-related mortality in the world
and one of the top ten causes of death in the United States. LCINS
is more common in women than men and differs by geographic
region such that it is seen more often in Asia, followed by North
America and then Europe. 4
RISK FACTORS FOR LUNG CANCER
Tobacco use is the most important risk factor for lung cancer.
The mortality rate of lung cancer is 25.7 times higher among
male smokers compared with lifelong never-smokers, and 25.0
times higher for current female smokers compared with lifelong
106 Section IV psychological issues related to site of cancer
Table16.1 Summary of Findings:Key Factors Associated With Lung Cancer
Factor
A. Single most important causal determinant of
individual and population risk, most valuable
indicator of clinical riska
B. Other risk factors causally associated with lung
cancera
C. Additional clinical risk indicatorsb
D.Examples of associations with consistent evidence
butcausal role not presently established
a The evidence for factors listed in these categories is extremely strong to meet epidemiological criteria for causality.
b The factor listed under clinical risk indicators are all strongly associated with increased risk of lung cancer but are listed in this category either because they are intrinsic characteristics
of the patient (ages, sex, ethnic ancestry, family history) or are factor with consistent evidence of increased risk that presently fall short of being rated as causal.
Alberg AJ, Brock MV, Ford JG, etal. Epidemiology of Lung Cancer:Diagnosis and Management of Lung Cancer, 3rd ed. American College of Chest Physicians Evidence-Based Clinical Practice
Guidelines, 2013. Reproduced with permission from the American College of Chest Physicians.
never-smokers. 5 Exposure to secondhand smoke (ETS) is an
important risk factor; according to the 2014 Surgeon General
report, ETS has accounted for 263,000 lung cancers since 1965.
Other known risk factors that are associated with lung cancer are
listed in Table 16.1.6 It is interesting to note that a diet high in
fruits and vegetables and increased physical activity have emerged
as protective factors for lung cancer, suggesting that health pro-
motion is an important focus both before and after the diagnosis
of lung cancer.
Several factors have been proposed for the development of
LCINS, including exposure to radon, cooking fumes, respiratory
disease, chronic infection, and genetic susceptibility. Moreover, it
seems that exposure to ETS, particularly in women, and exposure
to workplace carcinogens, particularly in men, are the two most
influential risk factors in LCINS.7
PREVENTION AND EARLY DETECTION
Eliminating uptake of smoking and exposure to secondhand
smoke and promoting smoking cessation are essential for prevent-
ing the majority of lung cancers. Even after the diagnosis, smoking
cessation remains an important way to improve clinical outcomes.
Continued smoking after the diagnosis of lung cancer interferes
Description
Active smoking of cigarettes and other tobacco products: Individual risk increases with
greater number of cigarettes smoked per day and greater number of years smoking. Population
risk increases with the prevalence of current smokers because population prevalence predicts
lung cancer occurrence with a latency period of about 20 y.
Secondhand smoke exposure
Ionizing radiation, including radon
Occupational exposures, e.g., arsenic, chromium, asbestos, tar, and soot
Indoor and outdoor air pollution
The risk factors above, plus:
Older age
Male sex, particularly among those of African American ancestry
Family history of lung cancer
Acquired lung disease, eg, COPD, TB.pneumoconioses, idiopathic pulmonary fibrosis, and
systematic sclerosis
Occupational exposures, such as silica dust
HIV infection
Fruit and vegetable intake (decreased risk)
Physical activity (decreased risk)
Marijuana smoking (not associated with risk)
with the efficacy of all types of cancer-directed treatment and has
been associated with decreased survival, increased recurrence,
and decreased health-related quality of life (HRQOL). 8,9 Thus,
smoking cessation is an essential part of comprehensive cancer
care after the diagnosis. Further information about smoking ces-
sation and cancer is found in Chapter1.
Although tobacco control legislation and smoking cessation
programs have started to decrease lung cancer mortality in the
United States, there remains a large at-risk population of those
who are former or current smokers.5 The risk for developing lung
cancer remains elevated among former smokers for many years,
even after smoking cessation. In fact, 50% of all ever-smokers are
former smokers5; thus, there has been a tremendous interest in
finding ways to detect lung cancer at earlier stages among those
who are at high risk for developing lung cancer.
Early stage lung cancer is generally asymptomatic and can be
identified only through special screenings. The National Lung
Screening Trial (NLST) in the United States, supported by the
National Cancer Institute, has provided compelling evidence of
the efficacy of lung cancer screening using low-dose computed
tomography (CT) to reduce mortality. The NLST showed a 20%
reduction in lung cancer mortality through annual low-dose
CT screening as compared with annual chest X-ray.10 The NLST

was the largest randomized controlled trial ever conducted and
was designed to determine whether lung cancer screening with
low-dose CT can reduce lung cancer mortality relative to screen-
ing through chest X-ray in high-risk individuals. Eligible partici-
pants were identified as current or former smokers who had no
personal history of lung cancer or any other cancer within the past
five years, those who had smoked the equivalent of one pack of
cigarettes a day for a minimum of 30years, and former smokers
who had quit less than 15years prior to participating in the study
and were between the ages of 55 and 75years. Participants were
randomized to the CT group (26,722) or the chest X-ray group
(26,732) of the trial. Screening was offered in each of the groups
at baseline and annually thereafter for two years. Among par-
ticipants who underwent at least one screening test, there were
346 deaths from lung cancer among 26,455 participants in the
low-dose CT group and 425 deaths among 26,232 participants in
the chest X-ray group.10
Based primarily on the NLST, the US Preventive Services Task
Force (USPSTF), as well as multiple other organizations, con-
cluded that lung cancer screening with low-dose CT reduces
death significantly in healthy individuals who are at higher risk
for lung cancer. Thus, the USPSTF recommends annual screening
for lung cancer with low-dose CT in adults aged 55 to 80years
who have a 30 pack-year (smoked one package of cigarettes daily
for 30years) smoking history and currently smoke or have quit
within the past 15years.11 Clinicians should discuss the potential
benefits and harms of low-dose CT screening with their patients
to decide if screening is an appropriate choice for early detection
of lung cancer.
DIAGNOSIS AND MEDICAL WORKUP
Two major types of lung cancer exist:non-small cell lung cancer
(NSCLC) and small cell lung cancer (SCLC). NSCLC is the major
type of lung cancer, comprising approximately 75%80% of all
lung cancers, whereas SCLC makes up the remaining 20%25% of
cases. NSCLC consists of several histological types; the most com-
mon include squamous cell carcinoma, adenocarcinoma, and large
cell carcinoma. Adenocarcinoma is the most common histology
that occurs in LCINS. Re-engineering of the cigarette as well as
the decline in smoking has influenced the shift toward increased
adenocarcinoma. SCLC tends to be a much more aggressive type
of lung cancer as compared to NSCLC and presents clinically with
massive lymphadenopathy and direct mediastinal invasion.6
The most common symptoms in newly diagnosed patients are
fatigue, pain, insomnia, and depression. Cooley and colleagues12
examined the prevalence of symptoms over time in 117 patients
receiving treatment for lung cancer and noted that fatigue and
pain were the most common symptoms for all treatment groups
at entry to the study, and these symptoms continued to be the
most common symptoms at three and six months. However, diffi-
culty in breathing and coughing become problematic at three and
six months for approximately one-third of patients. Altogether,
patients were noted to experience an average of four symptoms
at entry to the study, three symptoms at three months and three
symptoms at six months. Ongoing symptom distress and decreased
HRQOL are important issues for lung cancer survivors, even up to
five years after their treatment. Moreover, the presence of multiple
Chapter16 lung cancer 107
comorbidities, including pulmonary or cardiovascular, can exac-
erbate the symptom experience for all patients. Constitutional or
organ-specific symptoms are common with metastatic disease for
both SCLC and NSCLC, which may include fatigue, weight loss,
bone pain, or cognitive changes.
The clinical presentation of the patient and the results of radio-
logical tests (CT or positive emission tomography [PET] scans)
usually enable the clinician to make a presumptive diagnosis of
lung cancer and to differentiate between the types of lung cancer.
The methods used for the diagnosis of lung cancer depend on the
clinical status of the patient, the type and histology, the size and
location of the primary tumor, and the presence of metastatic
disease. The diagnosis is usually made by the easiest method
that will maximize the yield for both diagnosis and staging and
avoid unnecessary invasive tests for the patient. For example, in
patients who present with a centrally located tumor, obtaining
sputum cytology is a reasonable first step. Other potential diag-
nostic tests include flexible bronchoscopy, trans-thoracic needle
aspiration, or thoracentesis of an accessible pleural effusion. In
patients with NSCLC, it is important to identify those who may
be eligible for surgical resection of their cancer so that additional
diagnostic procedures, such as sampling mediastinal nodes
through mediastinoscopy, can be implemented to adequately
stage the cancer. It is essential to make sure that an adequate
sample of tissue is obtained when obtaining the diagnosis of
NSCLC since treatment decisions are based on the histology and
molecular characteristics of the tumor. Similarly, it is important
to differentiate limited versus extensive stage disease in SCLC, as
the aggressiveness and types of treatment often differ based on
the stage of the patient.
Major advances have been made in matching treatment for lung
cancer based on the molecular profile of the individuals tumor.
Diagnostic testing for EGFR (epidermal growth factor receptor)
mutation is recommended to identify the best treatment choice for
those with advanced stage NSCLC so that these agents can be used
as first-line treatments if appropriate.13 Although other genetic
mutations are being investigated for their role in individualized
treatment, none is currently recommended as a first-line diagnos-
tic test to establish treatment choices.
The lung cancer staging system was updated in 2010 and is
based on the TNM system of staging, which focuses on the size
of the tumor (T), the extent of regional lymph node involvement
(N), and whether metastasis or spread of the tumor has occurred
(M).14 The staging system provides a common language and a
consistent way to describe the extent of the disease. In addition,
the stage of disease provides clinicians and patients with infor-
mation about the types of treatment that may be appropriate and
potential outcomes associated with the cancer-directed treat-
ment. Stages range from Ito IV, where stage Iand II are localized,
III is regional, and IV is widespread disease. Atwo-stage system
is often used for SCLC: limited and extensive disease. Limited
stage disease is confined to the hemithorax of origin, the medi-
astinum, or the supraclavicular nodes that can be encompassed
within a radiation field, whereas extensive stage disease is more
widespread. Although SCLC has always been included in the
TNM classification system, the most recent update in the clas-
sification system was the first to show that using the TNM system
has greater utility and was associated with survival as compared
108 Section IV psychological issues related to site of cancer
with the dichotomous limited versus extensive classification sys-
tem; thus it is recommended to use the TNM system for staging
all types of lung cancer.14
CANCER-DIRECTED TREATMENT AND
INTEGRATION OF SUPPORTIVE AND
PALLIATIVE CARE SERVICES
This section of the chapter presents an overview of the
cancer-directed treatment of lung cancer and highlights advances
made within the last decade. In addition, the integration of sup-
portive and palliative care services into the clinical management
for this group of patients is discussed. The treatment of NSCLC
has undergone dynamic changes as technological and scientific
advances have been made within the last decade. Five-year sur-
vival rates for those with early stage NSCLC can be as high as 70%,
whereas survival rates for those with locoregional disease range
from 10% to 30%, and survival rates for those with metastatic dis-
ease are less than 5%. The five-year survival rates for those with
early stage SCLC, however, are only 14%, and the median survival
is 1624months, whereas the median survival for those with exten-
sive stage SCLC is 612months, and long-term survival is rare.
Early stage NSCLC (stage I and II) is treated with surgery as
the primary modality. The use of adjuvant chemotherapy along
with surgery for stage II NSCLC has shown benefit and is recom-
mended. When surgery is not an option, radiation therapy is used
for control of the primary tumor.
The use of combined modalities is preferred for those with stage
III NSCLC disease as long as patients have good performance status,
adequate cognitive function, and minimal weight loss. Treatment
often includes combined chemotherapy and radiation before or
after surgery if the tumor is resectable; in cases where the tumor is
unresectable, combined chemoradiation is the treatment of choice.
The main goals for treatment of stage IV NSCLC patients are
to enhance survival and promote palliation of symptoms. Factors
affecting selection of treatment include the presence of comor-
bidities, performance status, histological subtypes, and molecular
genetic features of the tumor. Over the past decade, discovery of
genetic mutations in lung cancer have led to the development of
molecularly targeted therapies that can be individualized based
on the specific genetic mutations identified through diagnostic
testing. Subsets of adenocarcinoma may harbor EGFR mutations,
which are most often seen in never- or light smokers, and the pres-
ence of this gene is responsible for the efficacy of EGFR-tyrosine
kinase inhibitor drugs such as erlotinib (tarceva). Other genetic
mutations that may have potential relevance for treatment deci-
sions in LCINS include translocations involving the EMLA 4-ALK
(echinoderm microtubule-associated protein-like 4-anaplastic
lymphoma kinase) gene, which has shown promising response
to treatment with ALK inhibitors.7 KRAS (v-Ki-ras2 Kirsten rat
sarcoma viral oncogene) mutations are found among smokers
with adenocarcinoma and are associated with poor response to
adjuvant chemotherapy and treatment with EGFR-inhibitors.7
Thus, efforts are underway to find therapies that will target
KRAS-mutant NSCLC.
EGFR-tyrosine kinase inhibitors are used as first-line treatment
for those with EGFR mutant NSCLC, whereas other types of lung
cancer are treated with combination chemotherapy. Maintenance
chemotherapy may be used among those who respond to initial
chemotherapy. Radiation therapy may provide symptomatic relief
among those with problems such as superior vena cava syndrome,
pain, or tracheal compression.
Limited stage SCLC is treated with chemotherapy and radia-
tion, whereas extensive stage is treated with chemotherapy alone.
In contrast to NSCLC, surgery plays a limited role in the treat-
ment of SCLC. Limited stage SCLC is treated with curative intent,
with approximately 20% of patients achieving a cure. Although
20%30% of patients with extensive stage SCLC may experi-
ence complete response to initial treatment with chemotherapy,
the response duration is usually short, with a median survival of
four months. Unfortunately, as compared with advanced stages of
NSCLC, treatment for SCLC has not made any significant gains
over the past decade.
SUPPORTIVE AND PALLIATIVE
CARESERVICES
Supportive and palliative care services (SPCS) are integral com-
ponents of care across the entire trajectory of care. Figure 16.1
provides a summary of SPCS that may be available across the tra-
jectory of illness, from prevention through survivorship or end
of life. It is important to recognize that patients with lung cancer
experience a higher number of unmet needs as compared with
other cancer patients. Li and Girgis15 surveyed 1492 consecutive
cancer patients and found that lung cancer patients experienced a
mean of 15.6 unmet supportive care needs as compared to 10.9 for
those with other types of cancers. In another study, Sanders and
colleagues16 identified that the greatest needs among patients with
lung cancer were in the physical and daily living domain, followed
by psychological needs, health system and information needs, and
patient care support needs. Over 91% of patients expressed interest
in receipt of at least one supportive care service, which included
information about their disease and treatment, exercise-related
information, and assistance dealing with fatigue and other symp-
toms. Higher levels of supportive care needs were associated with
worse physical functioning, greater symptom bother, lower sat-
isfaction with healthcare, and higher levels of intrusive thoughts
about cancer.
SPCS should begin early in the course of treatment for survi-
vors as well as those with advanced stages of lung cancer. Sarna
and colleagues17,18 identified that HRQOL among long-term
survivors was strongly related to distressed mood, underscoring
that ongoing assessment is an important target for intervention
among this group of patients. Temel and colleagues found that ini-
tiation of early palliative care for patients with metastatic NSCLC
resulted in significant improvement in health-related quality of
life (HRQOL) and mood, less aggressive care at the end of life, and
longer survival as compared to routine oncology care.19 The key
elements of this intervention consisted of symptom management,
strengthening coping skills, and cultivating an enhanced under-
standing about the illness and prognostic awareness.19
Multiple structured supportive care interventions delivered by
nurses16 have been shown to (1)decrease breathlessness, improve
mood and performance status; (2)delay dependency and symptom
distress; and (3)improve patient experience, reduce problems in
care, and reduce costs for care. Pulmonary rehabilitation appears
promising to improve performance status, fatigue, and HRQOL
 Chapter16 lung cancer 109

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Figure16.1 Supportive and palliative care services to guide lung cancer care.Wolcott DL, Jaconsen PB, Loscalzo MJ. Supportive oncology:new models for the role of
psychiatry in cancer care. Focus. 2013;11:471481. Reprinted with permission from the American Psychiatric Association.

among patients receiving treatment for lung cancer, but further
studies are needed to clearly identify its role in management.20
Despite evidence for the efficacy of SPCS interventions, routine
integration into oncology care remains challenging. Kumar and
colleagues21 assessed the utilization, determinants of use, and
barriers to access of SPCS among 313 breast, lung, and gastroin-
testinal outpatients with cancer. The most common services used
by participants were nutrition (26.5%), counseling (29.7%), and
physical therapy (15.1%). Pain and palliative care services were
used by 8.5%, and cancer rehabilitation was used by 4.1% of the
participants. Fifty-one percent of participants had not used any
SPCS since their diagnosis. Graduate education was associated
with higher use of SPCS as compared to those with less than a
high school education, whereas having a diagnosis of lung cancer
was associated with less SPCS as compared to women with breast
cancer. The biggest barriers were lack of awareness of services
available and lack of referral by their physician.
ASSESSMENT AND MANAGEMENT
OFPSYCHOLOGICAL DISTRESS
The identification of psychosocial concerns among patients
with lung cancer is essential to initiate appropriate treatment.
Psychosocial responses to lung cancer are influenced by societal
attitudes about lung cancer. Since the Surgeon Generals 1964 report
on the relationship between smoking and lung cancer, aggressive
anti-smoking campaigns have been implemented to increase aware-
ness of the dangers of tobacco use. One unfortunate effect of these
ads is the perception that lung cancer is a self-inflicted disease. Both
smokers and never-smokers diagnosed with lung cancer often feel
stigmatized and unjustly blamed for their illness. These experiences
are associated with negative thoughts and emotions, such as guilt,
self-blame, regret, and anger.22 Moreover, increased levels of stigma
are associated with anxiety, depression, and lower quality of life.23
In order to raise awareness about the stigma associated with
lung cancer, the Lung Cancer Alliance organized a provoca-
tive advertisement campaign entitled No One Deserves to Die
(Figure 16.2). One of the messages delivered to the public was
Lung cancer doesnt discriminate and neither should you. Help
Lung Cancer Alliance put an end to the stigma and the disease.
This message is especially relevant for healthcare providers
(HCPs) who are on the front lines of care. Patients worry that
they will be judged harshly, and many report upsetting interac-
tions with HCPs about their perceived smoking status, whether
they have smoked or not. Therefore, it is essential for HCPs to
take the initiative to lessen the burden on patients by having
nonjudgmental, open, and sensitive communication surround-
ing issues of cancer causation and any accompanying guilt or
concerns that patients may have associated with tobacco use. It is
important to remember, in the case of smokers, that most smok-
ers begin smoking in their early youth. Ample evidence supports
that smoking is not just a habit.6 Nicotine is very addictive, as
only 5 out of 100 smokers who make a quit attempt are able to
quit smoking one year later without assistance. Providing ces-
sation assistance with pharmacotherapy and behavioral coun-
seling doubles cessation rates; 24 however, some HCPs may be
reluctant to even address tobacco status with patients with lung
cancer because they do not want them to experience distress.
110 Section IV psychological issues related to site of cancer

Figure16.2 Lung Cancer Alliance advertisement campaign against lung cancer stigma.Reprinted with permission the Lung Cancer Alliance.

This, of course, prevents smokers from getting tobacco depen-
dence treatment or former smokers from getting the support
needed to prevent relapse.
Higher rates of emotional distress have been identified among
patients with lung cancer as compared to those with other types
of cancers. Graves and colleagues25 examined the rates and pre-
dictors of emotional distress in lung cancer patients being seen
in an outpatient setting. A total of 333 patients completed the
distress thermometer. Over half (62%) of the patients reported
distress at a significant level; predictors of distress included
younger age, pain, fatigue, anxiety, and depression. Hopwood
and Stephens26 examined self-reported rates of depression in
987 patients with inoperable disease and examined correlates
associated with depression to help identify at-risk patients using
the Hospital Anxiety and Depression Scale (HADS) and the
Rotterdam Symptom Checklist. Depression was noted in 33%
of patients before treatment and persisted in more than 50%
of patients. Functional impairment was identified as the most
important risk factor for depression. Pre-treatment symptom
burden, fatigue, and clinician-rated performance status were also
independent predictors.
Significant progress has been made in integrating the assess-
ment of distress into the clinical setting. In 2015, the American
College of Surgeons Commission on Cancer will require can-
cer centers to implement screening programs for psychosocial
distress as a criterion for accreditation.27 Avariety of valid and
reliable assessment tools are available to monitor distress and
identify psychosocial concerns.9 Use of these questionnaires
in the clinical setting may be used to enhance communication
between patients and their HCPs, to promote early recognition of
impaired HRQOL, or to identify changes in symptoms over time
in response to medical treatments. Tables 16.2 and 16.3 provide
a list of the most commonly used HRQOL questionnaires and
community-based resources that are available for patients with
lung cancer. Although screening for distress can help identify
those with higher levels of distress, screening alone is not enough.
It is essential to combine screening with further assessment
and, when needed, referral to appropriate SPCS and initiation

Table16.2 Health-Related Quality of Life Questionnaires Used in Lung Cancer Settings

Instrument No. of Items Dimensions Measured Time Reliability Validity Languages

European Organization for 30 5 functional scales, 8 symptom 1015 minutes Cronbachs =0.79 Construct Translated into
Research and Treatment of dimensions, 1 financial impact 81languages
Cancer (EORTC-QLQ-30) of cancer and global QoL scale.
Lung Cancer-specific 13 Lung cancerrelated symptoms 15 minutes Cronbachs Construct Translated into
module EORTC QLQ-LC13 (cough, haemoptysis, dyspnea, (including =0.530.83 23languages
and site specific pain), and QLQ-30)
treatment-related side effects
(sore mouth, dysphagia,
peripheral neuropathy, and
alopecia).
Lung Cancer Symptom Patient Physical, functional, social, 1015 minutes Cronbachs =0.86 Construct Translated into
Scale (LCSS)40 scale=9 psychological, spiritual QOL discriminant 47languages
Observer
scale=6
(continued)
Table16.2(Continued)

Instrument No. of Items Dimensions Measured Time Reliability Validity Languages

Functional Assessment of 27 Physical (7), Social (7), 5 minutes Cronbachs Discriminant Translated into
Cancer Therapy General Emotional(6), and Functional =0.89 Test-retest 53languages
Scale (FACT-G) well-being (7). correlation
coefficient=0.92
Lung Cancer Subscale 9 Symptoms (anorexia, fatigue, 10 minutes Cronbachs =0.68 Construct Translated into
(FACT-L) cough, dyspnea, and pain) and (including 20languages
some toxicities (weight loss, FACT-G)
dysphagia, cognition)
Medical Outcome Study 36 items, General health (5), mental 510 minutes Cronbachs =0.80 Content Criterion Translated into
Short Form (MOS-SF-36) 2 scales, 8 health (5), physical functioning Concurrent 110languages
subscales (10), limits due to emotional Construct
problems (3), limits due to Predictive
health problems (2), vitality
(4), body pain (2), social
functioning(2)
Adapted from McDonnell KK, Bullock LF, Hollen PJ, Heath J, Kozower BD. Emerging issues on the impact of smoking on health-related quality of life in patients with lung cancer and
their families. Clin J Oncol Nurs. 2014;18(2):171181.

Table16.3 Education and Support Resources for Patients With Lung Cancer

Organization Name Address/Phone Website Description Resources

American Cancer 12 Regional Offices across the http://www.cancer.org A nationwide community-based Patient education material
Society UnitedStates Headquarters organization dedicated to available in several different
locatedin Atlanta, GA eliminating cancer through languages, including Asian
Phone:1-800-ACS-2345 advocacy, education, research languages.
sponsorship, and service.
American Lung 55 W.Wacker Drive, Suite 1150, http://www. A national organization working Facing Lung Cancer:Support
Association Chicago, IL 60601 mylungcancersupport.org/ to save lives by improving lung from Day One, patient- and
Phone:1-800-LUNGUSA health and preventing lung caregiver-focused, web-based
disease through education, lung cancer information
advocacy, and research. resources.
American Society of 1900 Duke Street, Ste. 200, http://www.cancer.net/ The philanthropic arm of Offers comprehensive patient
Clinical Oncology Alexandria, VA 22314 cancer-types/lung-cancer the ASCO, an international education material on disease
organization composed of more and treatment options
than 25,000 oncology health
professionals.
Association of Cancer 173 Duane Street, Suite 3A, www.acor.org ACOR is a collection of online Offers information and support
Online Resources NewYork, NY 10013 cancer communities designed through its integrated system of
Phone:212-226-5525 to provide timely and accurate online discussion groups.
information in a supportive
environment. It is a free lifeline
for everyone affected by
cancer& related disorders.
The CHEST Foundation 3300 Dundee Road, Northbrook, IL http://www.onebreath.org/ The philanthropic arm of Link to a patient education
60062 document.doc?id=37 American College of Physicians. brochure for advanced lung
Phone:847-4981400 Creates educational programs, cancer care. It discusses palliative
supports research, and raises care, symptoms, and pain
public awareness about diseases management.
of the chest and prevention.
CancerCare National 275 Seventh Avenue, Flr. 22, www.lungcancer.org Program of CancerCare, a Offers counseling, support
Office NewYork, NY 10001 nonprofit organization that groups, financial assistance,
Phone:212-712-8400 provides free, professional educational workshops, and
support services to anyone publications to anyone coping
affected by cancer. with lung cancer.
(continued)
Table16.3(Continued)
Organization Name Address/Phone
Cancer Support 1050 17th Street, NW Suite 500
Community Washington, DC 20036
Phone:202-659-9709
Caring Ambassador Caring Ambassadors Program, Inc.,
LungCancer Program PO Box 1748, Oregon City, OR
97045
Lung Cancer Alliance 888 16th Street, NW, Ste. 800,
Washington, DC 20006
Phone:800-298-2436 (US)
Phone:2024632080
National Coalition for 1010 Wayne Avenue, Silver Spring,
Cancer Survivorship MD 20910
Phone:301-650-9127
Phone:888-650-9127
National Institute of 9000 Rockville Pike, Bethesda,
Health, Senior Health MD 20892
Phone:301-496-4000
Free to Breathe a 1 Point Place, Suite 200 Madison,
Partnership for Lung WI 53719
Cancer Survival Phone:608-833-7905
US National Library of 8600 Rockville Pike, Bethesda,
Medicine MD 20894
Website Description
http://www. CSC is an international
cancersupportcommunity nonprofit dedicated to
.org/ providing professional
programs of emotional
support, education, and hope
to people affected by cancer.
Likely the largest employer of
psychosocial oncology mental
health professionals in the
UnitedStates.
http://www.lungcancer CAP is a nonprofit, umbrella
cap.org/ organization that establishes,
oversees, and supports the
workof disease-specific
programs. Helps to optimize
thefull spectrum of wellness
and longevity among those
living with and at risk for lung
cancer through advocacy,
information, and support.
www.lungcanceralliance US-based nonprofit organiza
.org tion dedicated to lung cancer
patient support and advocacy.
www.canceradvocacy Survivor-led cancer advocacy
.org organization focused on
advocating for quality cancer
care and patient education.
https://nihseniorhealth. Website for older adults
gov/lungcancer/ developed by the National
lungcancerdefined/ Institute on Aging and the
01.html National Library of Medicine
both part of the National
Institutes of Health. It makes
aging-related health information
easily accessible for family
members and friends seeking
reliable, easy to understand
online health information.
http://www.freetobreathe A partnership of lung cancer
.org/ survivors, advocates, researchers,
healthcare professionals, and
industry leaders. Focuses on
accelerating research, helping
patients understand treatment
options, and ensuring that
patients benefit from innovative
therapies that save lives.
http://www.nlm.nih.gov/ The worlds largest biomedical
medlineplus/lungcancer library. The Library coordinates
.html a 6,000-member National
Network of Libraries of
Medicine that promotes and
provides access to health
information in communities
across the United States.
Resources
Services include toll free
cancer support helpline
(1-888-793-9355), support
groups, counseling, education,
and healthy lifestyle programs.
Provides state-of-the-art
information about lung cancer
treatment options to patients
and their families.
Patient support programs
include a toll-free hotline, Phone
Buddy program, online support
community, and a clinical trials
matching service.
Provides Cancer Survivor
Toolbox, which is a free,
self-learning audio program
that helps people develop
important skills to better meet
and understand the challenges
of their illness.
Offers online tutorials (both
audio and print) customized to
educate aging patients about
lung cancer.
Provides free patient
resources (information kit
for newly diagnosed patients;
booklet:living with a diagnosis
of lung cancer; personalized care
plan), community education,
and awareness resources.
Provides financial assistance, and
patient support.
Website offering comprehensive
information about lung cancer,
treatment options, and links to
patient education. Available in
12 languages.

of evidence-based treatments. Figure 16.1 provides information
about SPCS that may be appropriate.
Functional status is an important aspect of HRQOL and is used to
guide treatment-related decisions, especially among geriatric patients.
The use of a geriatric assessment has emerged as a potential strategy
that can be useful in caring for older adults. Asystematic review eval-
uated the effect of a geriatric assessment on cancer-related treatment
decisions and found that the initial treatment plan was modified in a
median of 39% of patients; two-thirds of the assessments resulted in
less intensive treatment. Moreover, specific interventions were sug-
gested for over 70% of the patients seen in consultation.28 These find-
ings suggest that geriatric assessment appears to have a significant
impact on cancer-related treatment decisions.
SUMMARY
Significant advances in early detection and treatment for NSCLC
have occurred over the past decade. As survival lengthens for
patients with lung cancer, enhancing HRQOL will be an impor-
tant goal for care. Patients with lung cancer report higher levels of
distress and more unmet supportive care needs as compared with
other groups of patients with other types of cancer. SPCS inter-
ventions have the potential to greatly enhance care, but integration
into routine care remains a challenge. Future research is needed to
identify innovative ways to disseminate and increase the uptake of
evidenced-based SPCS interventions among this group of patients.
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 CHAPTER17
Genitourinary Malignancies
Andrew J.Roth and Alejandro Gonzlez-Restrepo
Genitourinary (GU) cancers are common.1 With the exception of
testicular cancer, the incidence of GU cancers (e.g., prostate, blad-
der, renal, and penile cancers) increases with advancing age. Thus,
understanding coincident life phase characteristics is important
in optimizing the ability of each patient to cope with his or her ill-
ness. The effect of treatment on the quality of life (QOL) of patients
has become more significant as survival has improved for many
of these cancers. QOL areas of concern include coping with body
image and integrity changes, varying degrees of sexual and physi-
cal intimacy dysfunction, and infertility. These issues compound
the generic difficulties of coping with cancer, such as dealing with
pain, fatigue, and other complications of treatment, including
challenges of daily functioning and career uncertainty. Primary
treatment decisions are complicated by comparing the curability
and longevity potential of different options with post-treatment
QOL concerns.
PROSTATE CANCER
Prostate cancer is the most common non-skin cancer in males in
the United States, with an estimated 233,000 new cases in 2014.
About 60% of these new cases will occur in men over the age of
65.1 Incidence and mortality rates are more than twice as high
in men of African descent,1 who often have advanced disease at
diagnosis, yet underestimate their risk.2 Five to ten percent of all
prostate cancers are believed to be of familial predisposition. The
needs of this generally older population are influenced by genera-
tional and developmental phases of life. Psychological reactions
are influenced by psychiatric history and significant life changes
or events, such as recent widowhood, recent or impending retire-
ment, available supports, and loss of friends or family, in partic-
ular from cancer or prostate cancer. Nutritional factors, such as
diets high in saturated fat, have been correlated with increased
incidence of prostate cancer.3
Screening Guidelines
The American Cancer Society has recently changed its guidelines
by recommending that symptomatic men with at least a 10-year
life expectancy have the opportunity to make an informed deci-
sion with their healthcare providers about whether to be screened
for prostate cancer, after receiving information about the uncer-
tainties, risks, and potential benefits associated with prostate can-
cer screening. African American and other men at higher risk
(men who have a father or brother diagnosed with prostate cancer
before age 65)should receive this information beginning at age 45,
while men with strong family histories of prostate cancer should
be screened at age 40. Men at average risk should receive this infor-
mation at age 50. These changes were made because large-scale
population-based studies failed to show a reduction in prostate
cancer deaths associated with prostate-specific antigen (PSA)
screening. As it is still difficult to distinguish more lethal varieties
of prostate cancer from the more benign before men receive pri-
mary treatment, quality of life deficits might not be outweighed by
significant gains in longevity.
Diagnosis and Medical Workup
A PSA level can be normal, even in the presence of cancer. False
positive and false negative results can occur. PSA levels may vary
with the patients age as well as other medical factors. Oncologists
have noted patient anxiety surrounding PSA tests, and the antici-
pation of results that might indicate recurrence or progression
of disease. This has been termed PSA anxiety.4 Level of worry
about a current result may be related to the trend of recent test
resultsin one study, 5 men with stable PSA levels had less anxiety
than those whose scores were either going up or going down.
Medical Management and Treatment
Therapeutic choices and decisions may vary based on the extent
of disease, age of patient, life expectancy, specialty bias of physi-
cian, insurance coverage and ability to pay, side effect risk profile
acceptable to a patient, expense, and geography.6 Though overall
QOL may not be significantly different with the primary treat-
ment options, there may be compromises when considering spe-
cific treatment side effects and long-term complications. Primary
treatment options vary from watchful waiting, also described
as expectant monitoring, to active surveillance, surgery, radia-
tion, proton beam, and cryotherapy. Watchful waiting (deferred
therapy) is often recommended for those with significant comor-
bid illness, low-grade indolent cancers, and less than 10years life
expectancy. Active surveillance is suggested for younger men with
early-stage disease who get more frequent follow-up PSA tests,
biopsies, and observation. Further study is needed to observe
long-term medical and psychological benefits and complications
of deferred treatments.7 Genotyping for aggressiveness of the
tumor may also help decide which tumors need to be removed.
Surgical treatment options include the open radical prostatectomy
as well as laparoscopic and robotic prostatectomies, all of which

try to spare the nerves responsible for erectile functioning, while
the latter two claim less bleeding, less chance of infection, and less
time in the hospital after the procedure.8
Radiation therapy, either conventional intensity-modulated
radiation therapy (IMRT) or brachytherapy (seed implants),
often in combination with external beam radiotherapy, may yield
decreased immediate, though possibly increased delayed, inci-
dence of impotence than surgery. Radiation therapy may be used
with adjuvant androgen ablation. Radiation therapy carries a risk
of bladder and bowel function difficulties. Post-radiation treat-
ment PSA levels take a variable amount of time to reach a nadir
(not necessarily zero, as with surgery) that would indicate likely
cure from the cancer; this can lead to prolonged anxiety.
For more advanced prostate cancer, gonadotropin releasing hor-
mone (GnRH) agonists such as leuprolide, goserelin, or degarelix
are used to decrease the synthesis of testosterone or its action on
prostate cancer cell growth. Peripherally acting agents, such as flu-
tamide or bicalutamide, provide local anti-adrenergic activity to
control the effects of testosterone on the prostate cancer. Side effects
of androgen ablation may include erectile dysfunction (ED), loss
of libido, hot flashes, gynecomastia, concentration and memory
problems,9 irritability, anxiety, and depression.1012 If side effects to
anti-androgens become too bothersome, oncologists often consider
intermittent therapy, with some time off hormones. Abiraterone
and enzalutamide are newer hormonal agents. Abiraterone inhibits
Cyp 17 enzymes expressed in testis, adrenals, and prostate tumor
tissue, decreasing circulating levels of testosterone. Enzalutamide is
an androgen receptor inhibitor. Chemotherapeutic agents are used
for more advanced tumors; they too are not curative.
Management of Psychological Distress
Uncertainty about biopsy results, PSA tests, choice of treatment
options, and related outcomes, including potential sexual dys-
function, urinary incontinence, weakness, fatigue, pain, and
other side effects of the disease or treatment, can have profound
effects on mood, irritability, and anxiety.13,14
Men with prostate cancer respond to education, various
types of brief psychotherapy, such as including supportive,
cognitive-behaviorally oriented, and insight-oriented therapies,
group therapies, and medications for anxiety and depression.
Couples and Intimate Relationships
Couples and intimate relationships are vulnerable in the context
of prostate cancer. Studies have shown that spouses and partners
have even more distress than patients.15 Couples counseling can
improve the ability of spouses and partners to cope with the can-
cer together.16
Difficulties with sexual functioning occur from aging, from
the cancer itself, and from surgery, radiation, and hormonal
therapy.17 Hormonal therapy, in particular, eliminates libido as
well as erectile functioning, paradoxically decreasing the distress
about ED; however, decreased desire for any physical intimacy can
be harmful to a relationship. Coupled with ED, feelings of being
emasculated occur. Arealistic assessment of sexual functioning
before primary treatment may assist a man in choosing a more
appropriate treatment option for him. Therapies to improve ED
include phosphodiesterase-5 (PDE-5) inhibitors such as silde-
nafil, tadalafil, and vardenafil, penile injections and treatment
to address anxiety about these,18 vacuum erection devices, and
Chapter17 genitourinary malignancies 115
penile prostheses. Sex therapy with a trained therapist familiar
with cancer issues can help men express the feelings engendered
by this dysfunction, and also help a couple to learn alternative
ways of sharing physical intimacy.
Urinary Incontinence
Urinary incontinence occurs as a complication of surgery and radi-
ation, and leads men to shun social engagements. The fear of urine
leaking, of smelling of urine, and of having to use diapers feels
regressive and humiliating.19 Urologists can work with patients to
identify etiologies of incontinence, to educate patients and families
about incontinence, and to offer suggestions to alleviate or reduce
symptoms, such as pelvic muscle re-education, bladder training,
and anticholinergic medications. Artificial urinary sphincter
implantation appears to be a durable treatment when needed after
prostatectomy or radiation therapy. Psycho-oncologists can help
with supportive, cognitive, and behaviorally oriented strategies to
cope with incontinence and sometimes with antidepressants or
anxiolytics to treat psychiatric barriers to better coping.
Pain
Pain is often a symptom of advanced prostate cancer that can be dif-
ficult to control. Patients with pain are significantly more depressed
or anxious when compared with patients without pain, and patients
with pain may become suicidal; these mood changes may not be
related to the extent of disease.15 Unfortunately, older men are often
reluctant to take pain medications or dosages adequate to truly help.
Weakness and Fatigue
Weakness and fatigue are particularly upsetting symptoms to men
who have led active and independent lives and who are now more
dependent on family or friends. The illness, hormonal or radiation
therapy, pain medication, steroids, and other factors can cause
fatigue and weakness. Helping the patient reorganize his schedule
and set realistic goals may result in less distress. Various types of
exercise and strength training have recently been found to improve
fatigue in men with prostate cancer.20,21 Psychostimulants, such
as modafinil or methylphenidate, may counter the sedating effects
of opioids, increase motivation, enhance appetite, and elevate a
patients mood. Roth and colleagues22 found that methylpheni-
date could be an effective treatment for fatigue, even in older men
with prostate cancer, as long as they are monitored for possible
tachycardia and increases in blood pressure. An activating anti-
depressant such as bupropion, which will not compromise sexual
functioning, can be used to increase energy.
Hot Flashes
Hot flashes in men with prostate cancer are caused by medical and
surgical androgen ablation. Selective serotonin reuptake inhibitors
(SSRIs), such as sertraline and paroxetine, serotonin-norepinephrine
reuptake inhibitors (SNRIs), such as venlafaxine, and anti-epileptic
medications, such as gabapentin, have been reported to reduce the
frequency and intensity of hot flashes.23 Decreasing caffeine, alco-
hol, and hot fluid intake may help prevent or decrease the frequency
or intensity of the hot flashes.
TESTICULAR CANCER
Testicular cancer is the most common cancer in younger
American men aged 2040. It is considerably more common in
Caucasian than African American men, with intermediate rates
116 Section IV psycho-oncology psychological issues related to site of cancer
for Hispanics, Native Americans, and Asians. Distinct geographi-
cal and racial variations suggest that both genetic and environ-
mental factors promote the development of testicular cancer.24
Diagnosis and Medical Workup
Testicular self-examination is the most common form of detec-
tion of this cancer, usually with the presence of a small, hard
lump in either testicle, an enlarged testicle, a collection of fluid, or
unusual pain. However, most patients will first seek medical atten-
tion because of a painless, swollen testis. Back pain is the most
common sign of metastatic disease, often from tumor in the ret-
roperitoneum. Pulmonary symptoms, such as shortness of breath,
chest pain, or hemoptysis, occur due to advanced lung metastases.
The standard diagnostic procedure, after ruling out infection or
other disease by urinalysis, urine culture, and a testicular ultra-
sound, is to remove the affected testis via inguinal orchiectomy.
Biopsy is not possible in this disease because the cancer cells may
spread during the procedure. Orchiectomy also prevents further
growth of the primary tumor. Ninety percent of testicular cancers
are germ cell tumors (GCT), which are subdivided into seminomas
and non-seminomas. Lymphoma is the second most common tumor
of the testis and should be suspected in men over age 50. Staging of
the extent of disease to develop a treatment plan is accomplished
by computed tomography (CT) or magnetic resonance imaging
(MRI). The tumor markers -fetoprotein (AFP), -human chori-
onic gonadotropin (-HCG), and lactate dehydrogenase (LDH) are
used for the detection of small tumors and for treatment response
comparisons over time. Retroperitoneal lymph node dissection
(RPLND) is critical to stage non-seminomatous GCT and is per-
formed with curative intent. This procedure is often associated with
ejaculatory dysfunction and secondary infertility, though newer
nerve-sparing procedures may preserve normal ejaculation.
Medical Management and Treatment
Survival in this population has significantly improved in
recent years owing to improved diagnostic and treatment tech-
niques, with over 95% of patients expected to be cured.25 Cure
rates depend on the stage of disease, approaching 100% for
early-stage seminomas and nearly 100% overall survival for stage
Inon-seminomatous GCT.
The effects on fertility and the possibility of storing sperm
should be discussed with all patients undergoing chemotherapy
or radiotherapy. Early-stage seminomatous disease is treated with
orchiectomy and radiation therapy; chemotherapy with carbo-
platin has proved as effective as radiation. Treatment of moderate
disease will combine orchiectomy with either radiation or chemo-
therapy. More advanced disease is treated with orchiectomy and
multidrug chemotherapy. Common regimens of chemotherapies
include bleomycin, etoposide, and cisplatin (BEP).
Non-seminomas have often metastasized at the time of clini-
cal presentation. Early and moderate stage disease can be treated
with orchiectomy alone, or followed by either RPLND, observa-
tion with frequent follow-ups, or chemotherapy. Chemotherapy
regimens similar to those used in seminoma tumors may be used
in advanced-stage non-seminoma treatment. High-dose chemo-
therapy with peripheral blood stem cell transplantation is used
for metastatic refractory germ cell cancer and has been found to
improve survival for some patients, though regimens can be chal-
lenging for patients.26
Management of Psychosocial Issues
Many psychosocial stressors are related to coping with the diagno-
sis.27 This tumor often occurs in young men, for whom sexuality,
fertility, and intimacy are critically important. Artificial testicular
implants have been successful in helping men cope with concerns
about their appearance. RPLND can lead to infertility by causing
retrograde ejaculation, though sexual desire and ability to have
erections and orgasms are not affected. Asignificant number of
men will have long-term sexual avoidance or sexual dysfunction.
Couples therapy can address these issues to help gain perspective
on how relationships have been changed by cancer. Patients with
testicular cancer may have a 20% increase in the risk of suicide
over that of the general population.28
Infertility can be related to RPLND, radiotherapy, or che-
motherapy. Unfortunately, many men with testicular cancer
have been found to have low sperm counts even before diag-
nosis, limiting the usefulness of sperm banking at the time of
diagnosis.
Psychologically, the impact of this illness can affect key aspects
of a young mans life or a young couples relationship. Its presen-
tation at the peak of a young male adults development leads to
heightened risk of depression, anxiety, anticipation of pain, bodily
trauma, and death. Apart from infertility, fears about the effects
on sexual functioning need to be addressed, especially before a
young man has been involved in a long-term sexual relationship.
Thorough sexual histories should include questions about fre-
quency and intensity of sexual activity, including masturbation,
desire, erection, orgasm, and satisfaction. Approximately 10% of
patients will have long-term psychological problems.29 Surviving
patients are concerned with late complications of curative therapy,
as well as fears of recurrence. For these reasons, it is thought that
supportive and educational counseling should be offered before
and after cancer treatment.
Long-term effects from chemotherapy can lead to other QOL
problems. For instance, compromised renal function from cis-
platin, Reynauds phenomenon following combinations of vin-
blastine and bleomycin, pulmonary toxicity with bleomycin, and
neuropathy and ototoxicity, attributable to cisplatin and vinblas-
tine, leave patients with secondary deficits that challenge their
daily living. Short- and long-term consequences are also seen with
the use of radiotherapy in the form of erectile and ejaculation dis-
orders and secondary tumors.
BLADDER CANCER
There will be an estimated 75,000 new cases of bladder cancer
diagnosed in 2014;1 the majority of these cases will occur in men,
and the incidence is greater in whites, whose rates almost double
that of blacks, followed by Hispanics and Asians, who have the
lowest incidence. The largest known risk factor is tobacco smok-
ing. Seventy percent of cases are diagnosed after age 65. People
at high risk due to exposure or selected bladder birth defects
may benefit from screening with urine cytology and cystoscopy.
Currently, there are no good tests for early detection and wide-
spread screening of bladder cancer. Most are detected because
they cause grossly visible or microscopic hematuria. Over 90% of
bladder cancers are transitional cell carcinomas (TCC). Disease
stage has been shown to be the single best predictor of outcome
for TCC of the bladder.

Diagnosis and Management
Cystoscopy is the basis for diagnosis and monitoring of blad-
der cancer. Categorizing cases into superficial bladder cancer or
muscle-invasive bladder cancer is a useful way to describe treat-
ment and the multiple effects on QOL.
Superficial Bladder Cancer
Transurethral resection of the bladder (TURB) is the primary
modality for diagnosis of these tumors and is also the definitive
treatment for low-grade and superficial tumors, with periopera-
tive bladder instillation of chemotherapy recommended for most
patients. Agents used for this local treatment include the immune
modulator Bacillus Calmette-Guerin (BCG) and chemotherapeutic
agents, such as mitomycin, usually given by the intravesical route.
Cystitis is often an uncomfortable side effect of these treatments;
cutaneous complications from intravesical instillations may be
quite severe. Attempts to avoid or postpone cystectomy for local-
ized, superficial bladder cancers may require long-term follow-up
with repeated cystoscopies that can have negative psychological
effects. However, for high-risk noninvasive bladder cancers or for
those not responding to bladder instillation, cystectomy is rec-
ommended by many specialists. Transurethral resection followed
by bladder instillation often causes burning on urination, gross
hematuria, and urinary frequency, particular in the early phases of
treatment.
Men receiving treatment for early-stage bladder cancer gener-
ally do not have sexual dysfunction. However, there have been
reports of men developing penile curvature after frequent cystos-
copy. The overall impact on sexual activity is independent of age
and gender.30
Muscle-Invasive Bladder Cancer
Radical cystectomy (bladder removal) remains the standard
procedure for muscle-invasive bladder carcinoma, though
robot-assisted laparoscopic and radical procedures are being
studied.31,32 Surgery alone, or in combination with other treat-
ments, is used in over 90% of cases. Radical cystectomy impacts
erectile and urinary function, though the incidence is decreasing
with nerve and seminal vesiclesparing techniques. Testosterone
secretion is unimpaired, so sexual desire remains unchanged in
the long term. Prostate-sparing cystectomy is still to show onco-
logic efficacy despite its functional advantages.
Radiation therapy alone is controversial in some patients with
bladder cancer, though it may provide better short-term QOL in
Bag
Ileal conduit
Figure17.1 Options for urinary tract reconstruction (diversion) with cystectomy.Reprinted from Parkeh DJ, Sonat SM. Urinary diversion:options, patient selection,
and outcomes. Seminars in Oncology 2007;34(2):98109, with permission from Elsevier.
Chapter17 genitourinary malignancies 117
the physical, psychological, and sexual domains. Common side
effects include urinary frequency, nocturia, urgency, and reduced
bladder capacity. Surrounding organs are frequently affected and
may cause fecal leakage and urgency, and diarrhea with blood and
mucus with eventual development of proctitis.
With cystectomy, many patients have been helped by the inter-
nal development of urinary reservoirs constructed from bowel
(see Figure 17.1).33
These can be anastomosed to either the skin or urethra. When
attached to the urethra, continence can be maintained. This has
permitted the creation of the neobladder, with most patients
achieving daytime urinary continence. Although complications
are higher than with the conduit, these procedures obviate the
need for an appliance, and are welcomed psychologically.
Women make a better adjustment to the presence of a urinary
diversion than men do, perhaps related to their being more inde-
pendent in their stoma care than men. Radical cystectomy in
women also includes hysterectomy, oophorectomy, and resection
of the anterior wall of the vagina. The major sexual side effect for
women is genital pain, particularly during intercourse. Decreased
sexual arousal, desire, and loss of sexual attractiveness are fre-
quently reported. Surgical modifications to preserve internal
genitalia have been suggested as long as cancer control is not com-
promised. Use of vaginal dilators, lubricants, and estrogen creams
can help women become more comfortable during sexual activity.
Urinary tract reconstruction procedures affect overall QOL,
mostly in the sexual and urinary spheres. Symptoms vary with
the type of reconstruction. Patients with ileal conduits report
impaired body image, increased self-consciousness, and decreased
travel and activity levels related to concerns about urinary leak-
age, odor, and skin irritation at the stoma site. Those with conti-
nent diversion report symptoms related to having to use a catheter,
while neobladder patients report nighttime leakage. Almost all
populations, regardless of reconstruction technique, have sexual
dysfunction related to negative physical or psychological effects of
the procedure. Asound strategy to achieve greater QOL after radi-
cal cystectomy is thorough and active counseling on the various
reconstructive alternatives before the surgery, which allows choice
of the type of urinary diversion on the basis of patient preference,
anatomy, and tumor status.
Common chemotherapy regimens used for bladder cancer
include gemcitabine, cisplatin; methotrexate, vinblastine, doxoru-
bicin, and cisplatin (called M-VAC); carboplatin and either pacli-
taxel or docetaxel.
Urethra
Abdominal wall
Continent cutaneous reservoir Ileal neobladder
118 Section IV psycho-oncology psychological issues related to site of cancer
KIDNEY CANCER
Approximately 64,000 patients will be diagnosed with this cancer
in 2014, and more than 14,000 will die of the disease.1 Renal cell
carcinoma is the most common neoplastic lesion of the kidney and
is almost twice as common in men as in women. Diagnosis is often
incidental at the time of other medical procedures, and prognosis
may be improved when made early. Etiology has been associated
with cigarette smoking, obesity, and exposure to various chemicals.
Asignificant number of new cases have poor prognosis metastatic
disease at the time of diagnosis. The increased use of ultrasound
has resulted in a higher detection rate of earlier stage tumors.
Diagnosis and Management
Clinical presentations may range from the triad of hematuria,
pain, and palpable renal mass to more obscure paraneoplastic
syndromes, fever, anemia, or polycythemia. Pathologic staging is
the most important determinant of prognosis.
The treatment of choice for localized disease is surgical removal
of the affected kidney, with regional lymphadenectomy. Five-year
survival for stage Idisease ranges from 60% to 75%, and from 40%
to 65% in those with stage II disease. Renal preservation with only
partial excision of renal tissue by open surgical or laparoscopic
procedures has become more widely accepted, though there is still
uncertainty about long-term prognosis. Treatment can provide
challenges because of compromised renal function. Some patients
undergo watchful waiting.34
Most survivors of localized kidney cancer have normal physi-
cal and mental health, regardless of the type of nephrectomy
performed, though QOL is better for patients with more renal
parenchyma remaining after surgery. There may be transient com-
promise of mood and anxiety.35
To date, traditional chemotherapeutic agents have not dem-
onstrated sufficient antitumor activity to prolong the survival of
patients with metastatic disease. Newer anti-angiogenic agents,
such as sorafenib, sunitinib, axitinib, and pazopanib, are providing
improvement in care and QOL in people with kidney cancer.36,37
Immunotherapy, autolymphocyte therapy, vaccines, and non-
specific immunomodulators may prolong survival for patients with
metastatic renal disease. Interferon and high-dose interleukin-2,
used with some success in treating advanced renal cancer, can
cause depression and anxiety, which may be mediated through
cytokines with side effects such as fatigue and fever. Patients who
received prophylactic treatment of an SSRI antidepressant had less
depression than those who did not get the antidepressant; and for
many, major depression onset was delayed.38
The poor prognosis for this illness is the source of much psycho-
logical distress experienced by many patients and their families
after diagnosis and treatment. Later stages of disease are high-
lighted by metastases to bone, lungs, and brain, which necessitate
coping with pain, shortness of breath, concentration deficits, and
other cognitive difficulties. Distress is caused by disease-free peri-
ods after surgery but with the knowledge that recurrence is likely.
PENILE CANCER
Penile cancer occurs in about 1 in 100,000 men in the United
States; about 1640 new cases of penile cancer will be diagnosed,
and approximately 320 men will die of it in 2014.1 It is much more
common in some parts of Africa and South America, account-
ing for up to 10% of cancers in men. Squamous cell carcinoma
accounts for approximately 95% of penile cancers. Most are found
in the foreskin or on the glans, but it may develop in any area.
Known risk factors include human papilloma virus (HPV) infec-
tion, smoking, AIDS, and exposure to ultraviolet (UV) light
treatment.
Diagnosis, Management, and Quality of Life
Ulceration and fissures are the most common initial symp-
toms39 and 15%50% of patients delay seeking treatment from six
months to a year, despite clear symptoms in most cases. Suggested
explanations for this delay include psychological reasons, fear,
and anxiety, which lead to neglect, minimization, or denial of the
symptoms.40
Radical surgery is the most effective approach to management
of stage II and more advanced cases, with total amputation being
preferred in patients with involvement of the proximal third of the
penis or in urethra-infiltrating tumors.41 However, this interven-
tion carries serious anatomical and functional limitations as well
as psychological and sexual morbidity. Alternative treatments
such as partial penectomy and organ-preserving treatments are
often considered. Psychological distress is reported more often
in patients who underwent a total penectomy compared to those
who underwent a partial amputation, whereas social life problems
were not significantly changed.41 Similar to other amputations,
the phenomenon of phantom penis has been described, curiously
occurring only in the erect state.42
Psychological adjustment to the diagnosis and anticipation of
partial penectomy elicits fears of mutilation and loss of sexual
pleasure, as well as fears of dying and consequences to the fam-
ily. After surgery, the most frequent difficulties include resum-
ing sexual activity and the discomfort of having to sit to urinate.
There appear to be few problems in the relationships with part-
ners, and masculine self-image, remains mostly normal or only
slight affected. The frequency of coitus does not appear to be sig-
nificantly changed.
Recent surgical approaches to preserve penile tissue and func-
tional integrity without compromising oncologic control are help-
ing to minimize impact on QOL. Alternative procedures include
reconstruction of the glans using skin from the thigh, rectus
abdominal muscles, and glanuloplasty with distal urethra, among
others. Radiotherapy may be considered a treatment of choice
when preservation of sexuality is a major objective.
Before treatment, physicians must comprehensively evaluate
baseline sexuality and discuss the different treatment options,
including expected results and possible consequences. No
assumptions should be made about the importance of sexuality in
a patients life, as physicians often evaluate post-treatment sexual-
ity to be more impaired than actually experienced by patients.43
Arriving at a therapeutic choice must be a joint effort between the
patient, the physician, and the partner, if appropriate.
SUMMARY
The GU neoplasms are affecting a larger proportion of our popula-
tion as detection methods are improving. Survival and QOL have
improved in many of these cancers with improved diagnostics and
treatment techniques, though compromise to QOL still continues

to make available screening methods controversial. Most promi-
nent QOL issues include coping with changes in sexuality, blad-
der and bowel function, body image, relationships, fatigue and
pain in later stages of disease, and lifestyle. It is not easy to dis-
tinguish between physical and psychological etiologies of distress.
Psychological interventions provide avenues to decrease demor-
alization, and improve quality of living. In fact, urologists and
patients may not agree on the quality of life status in a particular
situation.
Management of distress encompasses a spectrum of psycho-
logical and psychiatric interventions that includes education,
individual and group psychotherapy, couples therapy, cognitive-
and behaviorally oriented interventions, and medications, specifi-
cally considered for patient-specific genitourinary and general life
issues. These referrals may be facilitated by increased knowledge
on the part of the mental health practitioner about the illness and
treatment-specific stressors, as well as a closer liaison with the GU
oncology staff.
ACKNOWLEDGMENTS
The authors would like to acknowledge the contribution of
Dr.Howard Scher, co-author of the chapter for a previous edi-
tion of this book, who has supported and inspired expertise in
clinical care and research about the psychosocial needs of men
with prostate cancer and other genitourinary cancers. We also
want to acknowledge Dr.Christian Nelson, who has contributed
greatly to the research on quality of life in men with genito-
urinary cancers, in particular regarding sexual functioning and
cognitive problems after treatment. We also wish to acknowl-
edge the financial support of The Research and Therapeutics
Program in Prostate Cancer of Memorial Sloan-Kettering
Cancer Society.
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 CHAPTER18
Gynecologic Cancers
Heidi S.Donovan and Teresa L.Hagan
The term gynecologic cancer refers to cancers of the female
reproductive system and includes cancers of the ovary, endome-
trium, uterus, cervix, vagina, vulva, and trophoblastic disease
(Table 18.1). Every year, an estimated 92,000 women are diagnosed
with a gynecologic cancer in the United States, and 28,000 women
die from the disease. As a group, they represent the third leading
cause of new cancers and the third leading cause of death from
cancers in the United States.1 Uterine cancer is the most common
gynecologic malignancy, and ovarian cancer is the leading cause
of gynecologic cancer deaths in the United States. The incidence
and mortality rates are dramatically different worldwide, where
cervical cancer alone is the third most common cancer in women
(530,000 new cases/year) and the fourth leading cause of cancer
death (270,000 deaths/year). In developing countries, cervical
cancer is the second most common cancer and the second leading
cause of death. In fact, 85% of all cancer deaths occur in devel-
oping countries, reflecting glaring global disparities in access to
screening and prevention strategies.
Women diagnosed with gynecologic cancer face a wide range of
challenges associated with disease and treatment. Many of these
challenges are unique to the specific type of gynecologic cancer;
others are common across gynecologic cancers and are charac-
terized by the experience of having a cancer of the reproductive/
sexual organs; others are similar to those faced by most individu-
als facing a life-threatening cancer. The purpose of this chapter is
to review the range of psychosocial challenges and evidence for
promising interventions designed to address the complex psycho-
social needs of women with gynecologic cancers.
DISEASE-SPECIFIC PSYCHOSOCIAL
NEEDS OF WOMEN WITH GYNECOLOGIC
CANCERS
Cervical Cancer
Two of the most important factors for understanding the unique
psychosocial challenges of cervical cancer are that (1)it is caused
by persistent infection by the human papilloma virus (HPV),
which is spread through sexual contact, and (2)given the natural
history of the HPV virus and the development of cervical cancer,
it is (or should be) preventable through screening and vaccination.
Although HPV infection is extremely prevalent (point-prevalence
estimates of 50%80% in the US), even among women with few
sexual contacts, women report negative emotions, stigma, shame,
and self-blame about the diagnosis.2
The vast majority of cervical cancers develop very slowly, allow-
ing ample opportunity for detection through regular Papanicolaou
test (PAP) screening. Furthermore, the HPV vaccine has made
cervical cancer the first cancer to be preventable through vaccina-
tion. With screening and vaccination improving outcomes, those
women who are diagnosed are likely to be socioeconomically dis-
advantaged, disenfranchised from the healthcare system, or living
in underserved areas with constrained access to primary and spe-
cialty healthcare services. Despite widespread availability of PAP
screening in the United States, approximately one-third of women
still do not receive screening, with lower screening rates among
minorities, those with lower education and income, those living
in rural areas, and other vulnerable patient groups, such as lesbi-
ans and individuals with serious mental illness.1 The social and
economic context that contributes to a higher risk for developing
invasive cervical cancer also leads women with cervical cancer to
have a greater need for supportive services (educational, psycho-
logical, financial, and social support) following diagnosis. 3
Endometrial Cancer
Endometrial cancer is the most common gynecologic cancer in
the United States and when diagnosed early has an excellent prog-
nosis. Fortunately, because postmenopausal bleeding is an early
and easily recognizable symptom, 68% of women are diagnosed at
early stages and the five-year survival is now 82% overall and 95%
for women diagnosed with local disease.1 Paradoxically, these rel-
atively favorable outcomes compared to many other cancers may
put women with endometrial cancer at risk for unmet psycho-
social needs. Women with this good cancer may perceive that
they do not receive or even deserve the same kind of educational
and psychosocial support that other cancer survivors receive. This
perception may also be driven by the close association between
endometrial cancer and obesity. One mixed methods study of
endometrial cancer survivors found that most women received no
transition care planning or documentation and few were aware
of risks for recurrence, late effects, or resources/support systems.4
Disparities in endometrial cancer outcomes require increased
attention among researchers and clinicians. Compared to white
women, black women are diagnosed at a later stage, have more
aggressive tumor histology, and have higher mortality rate.
Table18.1 Characteristics of Gynecologic Cancers and Associated Psychosocial Concerns

Ovarian Cervical/Vulvar Endometrial

Median age at diagnosis 63years Cervix:49years 62years
Vulvar:68years
Incidence/Mortality 22,240/14,030 Cervical: 49,560/8190
US:12,340/3040
World:530,000/230,000
Vulvar:4700/990
Risk factors Age HPV infection Late menopause or early menarch
Personal history of breast cancer Smoking Obesity
Family history of ovarian or breast cancer Higher parity High animal fat diet
Hereditary:BRCA1, BRCA2, or HNPCC Long-term oral contraceptive use Polycystic ovarian syndrome
Nulliparity Nulliparity
Obesity Unopposed Estrogen
Tamoxifen use
Lynch Syndrome
HNPCC
Typical treatment Surgery + platinum-based chemotherapy Early stages: Local disease:Surgery + brachytherapy or
(IV or IV+intra-peritoneal). Carbo-taxol Concurrent chemoradiation therapy with EBRT for Stage II
regimens most common +/ targeted cisplatin-based regimen +/ surgery Stage III:Surgery + chemo and/or
therapies (e.g., PARP inhibitors or radiation therapy.
Later stages:
bevacizumab)
Brachytherapy + external beam radiation Stage IV:
therapy (EBRT) + platinum-based When possible, surgery, followed by
chemotherapy chemotherapy and/or radiation.
Five-year survival rate All Stages:44% All stages:68% All Stages:82%
Local:92% Local:91% Local:95%
Regional:72% Regional:57% Regional:67%
Distant:27% Distant:16% Distant:16%
Recurrence rate 75%80% Cervical:35% 10%
Vulvar:24%
Screening No screening test for general population. Screening via Papanicolaou [Pap] No screening test available.
Ca-125, bi-manual pelvic exam, and Test +/ HPV testing
transvaginal ultrasound for women at
high risk.
Prevention Oral contraceptives HPV vaccine Oral contraceptives
Regular PAP screening to identify Physical activity
abnormal cells
Abstinence
Use of barrier and/or spermicidal gel
Important sociodemographic Those with BRCA mutations face Higher rates among minorities and those Incidence, stage at diagnosis, and
factors decisions about prophylactic with lower income and lower education. mortality higher among African
oophorectomy at young age. Americans.
Psychosocial concerns Cancer-Specific Concerns
Fear of recurrence Stigma Lack of attention due to good cancer.
Genetic information and prophylactic Shame Stigma associated with obesity
treatment decision-making Self-blame
Financial concerns
(continued)

Table18.1(Continued)
Ovarian
Concerns Common to Gynecologic
Cancers
Infertility in young women
Intimacy and sexuality
Psychological distress (anxiety,
depression,anger, PTSD)
Existential concerns
Late effects during long-term survivorship
Evidence-based Psychological interventions to reduce
interventions distress
Psycho-educational interventions to
promote self-management
Sexuality Counseling
Social Support
Ovarian Cancer
Ovarian cancer is the second most common and the most deadly
gynecologic cancer in the United States, as most cases are diag-
nosed at a late stage. Women typically undergo surgery, followed
by aggressive, multimodal chemotherapy, often resulting in mul-
tiple co-occurring physical and psychological symptoms. Despite
initial responses to chemotherapy, most women with stage II dis-
ease or higher will experience a recurrence within two years of
treatment completion.
Not unexpectedly, fear of recurrence is a central issue to women
with an ovarian cancer diagnosis. This fear can directly lead to
increased anxiety, depression, and other symptoms. Survivors are
aware of the high rate of recurrence, and regular CA-125 blood
tests to monitor disease progression may create a steady, ongo-
ing fear of the cancer recurring. Those who recur face a future
of living with a chronic but life-threatening disease with multiple
episodes of recurrence and treatment, and most will ultimately
die of the disease. Those who do not recur often struggle to gain
confidence in remission and report feelings of anxiety and guilt as
they watch other survivors face recurrence and end of life.
Approximately 5% of ovarian cancers are hereditary in nature,
associated with a BRCA1, BRCA2, or HNPCC (hereditary
non-polyposis colorectal cancer) mutations. Women at high risk
for hereditary ovarian cancer are in need of psychosocial and
genetic counseling to support individual decisions about genetic
testing, childbearing, preventive treatment, prophylactic surgery,
and/or aggressive screening.
Vulvar Cancers
Vulvar cancers are rare (5%8% of gynecologic cancers), and early
symptoms usually include painful intercourse. About 40% of new
cancers are diagnosed at a late stage, often because women delay
seeking medical care for early symptoms. Two main types of vul-
var cancer exist:the first caused by human papilloma virus (HPV)
infections and more common in younger women, and the sec-
ond caused by chronic inflammation and more common in older
women. Risk factors and psychosocial needs for the first type are
similar to those of cervical cancer.
Chapter18 gynecologic cancers 123
Cervical/Vulvar Endometrial
PSYCHOSOCIAL ISSUES THAT ARE
COMMON ACROSS GYNECOLOGIC
CANCERS
Gynecologic cancer and its treatment directly affect a womans
reproductive and sexual health. Sexual dysfunction and sexual
concerns include physical changes to the womans body as well as
changes in her thoughts, feelings, and attitudes about her sexual-
ity and sexual relationships.
Psychosocial Impact of Cancer-Related Infertility
Gynecologic cancers may impact a womans ability to become
pregnant and maintain a pregnancy. If a womans ovaries and/or
fallopian tubes were removed, she will undergo surgical meno-
pause due to the removal of estrogen production. Other surgeries
can increase the risk for complications during pregnancy. Many
types of chemotherapy also cause infertility.
Infertility can be one of the most distressing consequences
of cancer for a young survivor, and distressing emotions may
persist long after the cancer is treated. 5 Initially, young women
may be focused on decisions around cancer diagnosis and
treatment and may not think about fertility issues. Discussing
fertility while options are still available can help a woman
understand her options and begin processing possible treat-
ment consequences.
When loss of fertility is a possible consequence of treatment,
women typically experience a sense of loss, feelings of isolation,
anxiety, and depression. Deciding between fertility options can
cause distress because of the need to make high consequence deci-
sions in a very short period of time. Assisting a woman as she copes
with these decisions and the physical and psychological changes
associated with infertility is a critically important and intimate
process. Awomans fertility planning must be individualized with
her healthcare team, based on her age, treatment, risk for com-
plications, and family planning preferences. Fertility-preserving
surgeries or alternative treatments may be available in some
early stage ovarian and cervical cancers. Assisted reproduc-
tive technologies are becoming increasingly common, including
124 Section IV psychological issues related to site of cancer
cryopreservation of embryos, ovarian tissues, or oocytes. Women
may also consider adoption, donor eggs and embryos, or surro-
gacy as alternatives.
Intimacy and Sexuality
Bilateral oophorectomy results in surgical menopause that can
lead to vaginal dryness, hot flashes, and painful intercourse. 5
Gynecologic surgeries can also lead to lower limb swelling or
lymphedema in about one-quarter of all survivors, with varia-
tions by type of cancer and treatment. Hysterectomy, oophorec-
tomy, vulvectomy, chemotherapy, and/or radiation may lead to
anatomical changes including pelvic nerve damage, shortening
of the vagina, reduced vaginal elasticity, and clitoral removal.
Post-coital bleeding may also occur, along with changes in sexual
arousal, vaginal lubrication, genital sensitivity, and orgasm. For
many women, these changes occur abruptly without clear antici-
patory guidance from their providers, thus making adjustment
difficult.
The physical effects of cancer treatment can have dramatic
effects on a womans ability to engage in and enjoy sexual activ-
ity. Intimacy (a feeling of closeness) and sexuality (the capac-
ity to engage in sexual activity) are often cited as complications
of gynecologic treatment and survivorship, with estimates of
30%100% of survivors reporting problems. 6 Changes in body
image, fear and anxiety about sexual performance, and altered
body image impact a womens ability to engage in and enjoy a
healthy sex life. Some survivors report having negative thoughts
and emotions surrounding sexual contact, and may blame them-
selves or their partners for their cancer diagnosis, and they may
withdraw from sexual contact with partners due to fear of injury
or recurrence.
Sexual concerns remain prevalent issues among women dur-
ing treatment7 and after treatment ends.6,8 Even after the physi-
cal trauma of treatment, a woman may still have lower interest in
sexual activity. Risk for sexual concerns tends to be high among
women with heavy role burdens and women with pre-existing dif-
ficulties communicating openly with their partners.
Managing the sexual needs of the woman and her partner
can be challenging. Women may feel a responsibility to meet
the sexual needs of their partners despite having physical and
emotional difficulties. Some women perceive their partners as
pulling away from them or having changing sexual roles. Often,
communication between the woman and her partner is strained,
creating several challenges for resolving sexual concerns and
maintaining an overall healthy relationship. These challenges
are compounded by healthcare providers not adequately prepar-
ing women for physical and psychological changes and womens
discomfort in initiating discussions about their concerns with
providers.
Femininity
Feeling a loss of femininity often occurs among women with
gynecologic cancer. The defining features of the female sex (ova-
ries, uterus, cervix, vagina, etc.) represent a womans ability to be a
mother, woman, and sexual being. Losing those organs may alter a
womans view of herself. If her ability to bear children is lost, then
her feminine identity may be disrupted. Furthermore, changes in
body image, feeling less sexually attractive, and feeling different as
a woman are frequent occurrences in survivors.6
Complete hair loss also impacts a womens feminine identity
and serves as a constant public reminder of her illness. Poor body
image may occur related to weight gain, scarring, alopecia, con-
cern about sexual attractiveness, loss of confidence, and perceived
accelerated aging.
PSYCHOLOGICAL DISTRESS ASSOCIATED
WITH ACANCER DIAGNOSIS
Psychological distress occurs across the survivorship trajectory
for women diagnosed with gynecologic cancers. Though psycho-
logical problems and quality of life tend to improve over time, this
is not universally true for all women.9 Anxiety remains high and
is one of the most frequently reported and lasting psychological
concerns. Post-traumatic stress disorder (PTSD) is reported in
one-fifth of gynecologic cancer survivors, and close to one-third
of women with advanced stage disease have symptoms of PTSD.10
The more unmet needs a survivor has, the more likely she is to
experience psychological distress.10
Women at highest risk for unmet psychosocial needs include
younger women, longer time since diagnosis, post-traumatic
stress, low optimism, low quality of life, anxiety, and depression.11
Younger women with gynecologic cancer report the disease hav-
ing a greater impact on their family life, social activities, health
status, and several symptoms including poor body image and
sexual dysfunction.12 Fears of recurrence are consistently found
to be one of the most concerning needs of women with gyneco-
logic cancer. Anxiety, PTSD, and poor functional and emotional
well-being have been shown to be common clinical predictors of
fear of recurrence. Stage of disease at diagnosis is inconsistently
associated with psychological distress.10,11
Long-term survivors of gynecologic cancers continue to have
a range of psychological and physical concerns based on type of
disease and treatment received.13 Anxiety remains a distressing
symptom among many long-term survivors.11 About 43% of sur-
vivors continue to have unmet needs, the most prevalent needs
being fear of recurrence, concerns about worries of people close to
them, uncertainty about the future, tiredness, and not being able
to do things they used to be able to do.14 Women at higher risk for
unmet needs are those who live in remote locations, are unable to
work, have lymphedema, and who are not in remission.
INTERVENTIONS TO ADDRESS THE
PSYCHOSOCIAL NEEDS OF WOMEN
WITHGYNECOLOGIC CANCER
Despite a robust literature documenting the wide range of psycho-
social needs, their onset and duration, and associated risk factors,
there are relatively few studies testing interventions to address
these needs. Here we address the evidence for psychological inter-
ventions to reduce distress, psycho-educational interventions to
promote self-management of psychological and physical symp-
toms, sexuality counseling, social support interventions, commu-
nication interventions, and advocacy.
Psychological Interventions to Reduce Distress
Multiple psychological interventions (e.g., counseling, cogni-
tive behavioral therapy) have been evaluated for their influence
on emotions and quality of life. Arecent review of psychological

interventions to reduce psychological distress among gynecologic
cancer survivors concluded that counseling interventions improve
depression and anxiety among gynecologic cancer survivors.15
Cognitive behavioral therapy also showed some positive benefit.
A study assessing quality of life among women with ovarian
cancer through the Gynecologic Oncology Group found that
almost half of women would likely participate in counseling to
address psychosocial issues related to their cancer.16 However,
not all women who have psychological issues or needs neces-
sarily want help addressing them.17 Early assessment of psycho-
logical needs and preferred methods of assistance can help guide
decision-making regarding appropriate therapy.
Psycho-educational Interventions to
PromoteSelf-Management
Gynecologic cancer survivors have many informational and
self-management needs. Information about disease, treatment,
and symptom management tends to be the most highly val-
ued.18 Women receiving poor symptom control are at higher
risk for poorer psychological and quality of life outcomes.7 In
addition, psychosocial concerns such as depression and anxiety
often manifest in physical symptoms, including poor sleep qual-
ity and persistent fatigue. Notably, many physical symptoms have
evidence-based, effective treatments that are not adequately rec-
ommended by providers.
Survivors also desire information about specific psychosocial
issues. The most highly rated psychosocial information needs
among gynecologic cancer survivors include how cancer and
treatment may affect the relationship with a partner, how to
cope with fear of recurrence, and information about existential
issues or the meaning of life.18 Information about specific emo-
tions, such as anger, frustration, sadness, anxiety, and grief, is
also valued.
Psycho-educational interventions to provide information
and promote self-management of psychological and physical
symptoms hold promise for improving psychosocial outcomes.
A six-month intervention addressing both psychological and
physical self-management needs of gynecologic cancer survivors
and led by advanced practice and psychiatric nurses resulted in
decreased uncertainty and symptom distress, and improved men-
tal and physical quality of life over time compared to an attention
control group.19 Aweb-based psycho-educational symptom man-
agement intervention (WRITE Symptoms) delivered by nurses
over Internet message boards demonstrated early benefit in reduc-
ing symptom-related distress for women with recurrent ovarian
cancer.20
Sexuality Counseling
Although sexual concerns have been well documented in the lit-
erature, few intervention studies have been conducted. Therefore,
the essential elements of interventions to improve psychosocial
outcomes related to sexuality in gynecologic cancer survivors
are unknown. Arecent review of interventions identified only
three intervention studies addressing sexual concerns, two of
which had non-significant findings over time).6 The third study
evaluated a psycho-educational intervention delivered in three
sessions that combined education, cognitive behavioral ther-
apy, and mindfulness training to increase awareness of arousal
Chapter18 gynecologic cancers 125
and to teach arousal-enhancing techniques. This small sample
pilot study of women with early stage cervical and endometrial
cancers demonstrated improvements in sexual desire, arousal,
orgasm, depression, sexual distress, and quality of life.21 Given
the dearth of intervention research, it is not surprising that
sexuality concerns are also not adequately addressed in many
clinical settings. Roughly only a quarter of doctors and a fifth of
nurses discuss sexual concerns with women with ovarian cancer,
despite knowing that the women were likely experiencing sexual
problems. 22
Social Support
Social support is a vital aspect of a womans quality of life. Women
report that social connectedness with other survivors can pro-
vide valued knowledge about cancer and its treatment, coping
skills, and a tool to share emotions and experiences with others. 23
Referral to community social support services remains extremely
low (28%). Yet, two-thirds of women who were aware of such ser-
vices used the service, and 86% of women who received a referral
used the service.24
Unfortunately, clinical trials of social support interventions
targeting women with gynecologic cancers are rare, so little is
known about the key elements, timing, or necessary duration.
Furthermore, women vary in their interest in social support inter-
ventions. While some women prefer peer support groups because
they foster emotional bonds, empathy, reciprocity, humor, and
guidance, other women do not report benefits from such groups.25
Furthermore, women vary in their preferences for problem- or
emotion-based coping. Based on her needs and preferences, a
woman can be referred to different forms of support to help her
address her concerns.
Survivorship Care Planning
Patient-provider communication and inter-professional com-
munication are important for meeting the psychosocial needs of
gynecologic cancer survivors; however, few studies have evalu-
ated interventions to promote communication in this patient
population. Simply putting a psycho-oncologic statement in the
discharge summary did not significantly impact communica-
tion between patients and providers. 26 Instead, it is suggested
that written information with specific instructions, along with
communication skills training, be used to improve provider
communication.
Once a gynecologic cancer survivor transitions back to her
primary care physician, communication is essential. Primary
care providers may not be aware of resources or interventions
for the unique needs of these survivors (e.g., sexual health con-
cerns and fear of recurrence). Increasingly, advocacy and pro-
fessional organizations have promoted the use of personalized,
comprehensive survivorship care plans at key transition points
in the survivorship trajectory. Unfortunately, evidence to sup-
port the efficacy of care plans in reducing late effects and pro-
moting physical and psychological health in survivorship is still
lacking.
Advocacy
Advocacyboth organized and personalis key to address-
ing the multiple, diverse needs of gynecologic cancer survivors.
126 Section IV psychological issues related to site of cancer
Gynecologic cancers may not have as prominent advocacy net-
works as other cancer types, but efforts are increasing to raise
awareness about the needs of these women. Historically referred
to as cancers that whisper, advocacy groups are raising aware-
ness among the public, healthcare professionals, and policymak-
ers about the signs and symptoms of these cancers.
Groups like the National Ovarian Cancer Coalition, Ovarian
Cancer National Alliance, National Cervical Cancer Coalition,
and Foundation for Womens Cancer represent vital outlets for
survivors and advocates to raise awareness about the needs of
women with gynecologic cancers. In 2005, the advocacy com-
munity successfully lobbied congress to pass the Gynecologic
Cancers Education and Awareness Act, which authorized the
Centers for Disease Control and Prevention to spend $16.5mil-
lion on a national awareness campaign. Not only do such groups
target national and international political forces, they also serve as
networks that provide patient education, peer support, and persis-
tent action for groups of survivors.
Survivors are also encouraged to advocate for themselves. No
one understands her body and mind as well as the woman herself.
Symptoms need to be recognized early, and the onslaught of psy-
chological and physical challenges occurring post-diagnosis must
be treated. Awomans ability to stand up for herself and seek the
care that meets her needs and priorities helps ensure that she gets
adequate, personalized care. To date, no interventions have been
specifically designed to promote self-advocacy, but this represents
an important avenue for future research.
CONCLUSION
Healthcare providers caring for women with gynecologic cancer
need to be aware of the multiple ways in which these cancers affect
womens lives. Access to screening, age and stage at diagnosis, and
types of treatment regimens all influence the psychosocial needs
of gynecologic cancer survivors. Additional research is needed to
identify the best ways to assess and intervene to meet the needs of
these women. Issues like femininity, fertility, sexuality/intimacy,
social support, communication and symptom management are
ongoing, difficult needs for many survivors. Being aware of these
cross-cutting concerns can help providers address the unmet
needs of gynecologic cancer survivors, raise awareness about the
need for improved research and management, and improve the
standard of care for these cancers in the future.
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 CHAPTER19
Skin Neoplasms and
Malignant Melanoma
Peter C.Trask
Skin neoplasms are the most common form of cancer, affecting
over 3.5million Americans each year;1,2 they also are among the
most curable. Occurring in either the flat squamous cells of the
outermost layer of the skin, or in the basal or melanocyte cells
of the lower skin layer, these neoplasms are subsequently classi-
fied into two categories:(1)keratinocytic, or non-melanoma skin
cancer (NMSC), which includes basal cell carcinoma (BCC) and
squamous cell carcinoma (SCC); and (2) melanoma. BCC and
SCC are common, easily treatable, and highly curable, whereas
melanoma is less common (accounting for approximately 4%5%
of new cancer cases), yet is often easily treatable if caught early.1
The incidence of both NSMC and melanoma has increased consis-
tently over the past 20years.3,4
BASAL CELL AND SQUAMOUS
CELLCARCINOMA
Incidence and Mortality
Although there is a lack of published data on the incidence of
NMSC due to the fact that most cancer registries do not collect
information on these diseases, worldwide incidence rates were
presented in a recently completed systematic literature review.5
The incidence of NMSC in the United Kingdom ranged from
100 per 100,000 person-years in England to 119 per 100,000 in
Scotland. BCC rates in the 90s per 100,000 were also observed
in several European countries and parts of Canada, whereas in
Australia, the rate of BCC was 884 per 100,000 person-years. In
the United States, over 2million cases of NMSC occur per year,6
with BCC and SCC accounting for over 90% of all skin cancers.1
BCCs occur approximately four times more than SCCs and
account for more than 75% of NMSC. The incidence of BCC and
SCC varies by geographic region and race, with higher incidences
reported in areas of high sun concentration, and in whites. The
relationship between cumulative sun exposure and SCC is higher
than that for BCC. Incidences of both cancers are also higher in
individuals over 40years of age, and are slightly more frequent
in males. Although almost 100% curable if diagnosed and treated
early, approximately 3,170 people were anticipated to die of NMSC
in the United States in 2013. Like the incidence, the mortality rates
are higher in males than in females.1
Description
Basal cell carcinoma tends to grow slowly over months to years,
rarely metastasizes, and tends to occur most frequently in areas
that are regularly exposed to the sun, such as the face and neck
(80%90%), and upper trunk.7 Early BCC presents as pink to red,
pale or waxy, round to oval nodules, which may occasionally bleed
when ulcerated. If untreated, BCC can spread locally to both sur-
rounding tissue and bone. SCC is also most often observed on
areas of the body that have been exposed to sun, including the
nose, ears, and lower lip of the face, as well as the back of the
hands. SCC presents as a scaly, red, irregularly shaped patch of
skin, often in damaged (e.g., within scars) or chronically irritated
skin, which can ulcerate and bleed. They occasionally occur in
the genital area. SCC frequently grows faster than BCC, although
there is equivocal information as to whether SCC size increases
with increasing time.7,8
Etiology
The occurrence of BCC is correlated with sun exposure. This
relationship appears stronger for exposure that occurred early in
life and is chronic as opposed to intermittent.9 Other factors that
increase the likelihood of BCC include exposure to inorganic arse-
nic, ionizing radiation, and immunosuppression. As an example
of the latter, there is an increased incidence of BCC in individuals
who have undergone organ transplant. Sun exposure and being
immunosuppressed also contribute to the development of SCC. In
addition, SCC is increased in individuals who have been treated
with phototherapy, and in those who have mutations in the p53
tumor-suppressor gene.7
Prevention
Given the link between sun exposure and both BCC and SCC, it
is not surprising that the prevention of both includes reducing
sun exposure through the use of sun-protective clothing, broad
spectrum (i.e., ultraviolet Aand B [UVA and UVB] blocking of at
least sun-protection factor 15 [SPF-15]) sunscreens, limiting sun
exposure during peak hours of UVA and UVB radiation (usually
11 a.m. to 3 p.m.), and limiting exposure to tanning beds.10 In
addition, individuals should limit their exposure to occupational
hazards.7 As individuals with a diagnosis of SCC have a 52% risk

of developing a second NMSC within the first five years following
diagnosis,11 it is additionally important that the aforementioned
behaviors are pursued by those who have already been diagnosed,
as well as engaging in skin self-examination.
Screening Guidelines
Currently, the routine screening for skin cancer (both NMSC and
melanoma) is controversial. The National Comprehensive Cancer
Network (NCCN) has not put forth any guidelines for the screen-
ing and diagnosis of skin cancers. In addition, in 2009 the US
Preventive Services Task Force concluded that the available evi-
dence was insufficient to assess the balance of benefits and harms
of using a whole-body skin examination by a primary care clini-
cian or patient skin self-examination for the early detection of all
skin cancers in the adult general population.12 They do, however,
recommend counseling individuals who are between the ages of 10
and 24years with fair skin about limiting their exposure to ultra-
violet radiation as a way of reducing their risk for skin cancer.13
Diagnosis
As the majority of NMSCs occur in areas of the body that are
easily observed, BCC and SCC are frequently self-diagnosed.
Although not encouraged by formal guidelines, the monthly prac-
tice of thorough skin self-examination, particularly for those at
risk, can increase the likelihood that any skin cancers are found
early. As part of this examination, individuals should pay particu-
lar attention to any new growths or sudden or progressive changes
in growths that are already present. To increase the likelihood
of lesions being diagnosed in an early stage, suspicious growths
should be evaluated with minimal delayan evaluation that
would likely involve an excisional biopsy and pathological tissue
examination.7
Treatment
For the vast majority of BCC and SCC diagnoses (approximately
90%), treatment is limited to surgical excision. In the minority of
cases where the cancer is more advanced, radiation, electrodes-
sication and curettage, cryotherapy, topical therapies (Imiquimod
and 5-fluorouracil), vismodegib, or even more radical surgeries
may be necessary.2 Subsequent plastic surgery may be needed to
reduce the disfigurement resulting from the surgery.7,14
Prognosis
Given that the majority of these cancers are found early, the surgi-
cal removal of tumors that are less than 2cm in diameter results
in a cure rate of approximately 95%.15 Cure rates are less for indi-
viduals with larger tumors.
Management of Psychological Distress and Problems
Although NMSC is readily treatable and rarely metastatic, con-
cerns and psychological distress do occur. Indeed, a recent study
found that among NMSC patients at any point in their disease pro-
gression (i.e., newly diagnosed, in treatment, follow-up), approxi-
mately 20% reported clinically significant levels of distress.16
Arecent study evaluating the disease-specific health-related qual-
ity of life (HRQOL) of individuals with NMSC noted that the
most prevalent concerns focused on worries about tumor recur-
rence, in addition to those related to the scar size and visibility.
Chapter19 skin neoplasms and malignant melanoma 129
Psychological distress (i.e., anxiety and depression) were predicted
by skin cancer HRQOL concerns, and speak to the importance of
assessing the presence of concerns and providing relevant inter-
ventions in order to reduce psychological distress.17 Studies have
not been conducted to address these issues specifically among
individuals with NMSC.
MALIGNANT MELANOMA
Incidence and Mortality
According to the American Cancer Society, approximately 76,690
individuals (45,060 males and 31,630 females) were expected to
be diagnosed with melanoma in 2013.1 This makes it the fifth and
seventh most common cancer among men and women, respec-
tively. The probability of developing melanoma varies by age and
gender, and is highest among men and women 70 years of age
and older (1 in 50 in men; 1 in 120 in women). Incidence rates
of melanoma have increased over the last 30years. The five-year
survival rates for all stages of melanoma have also increased over
this period, and are currently at 93%; however, this is primarily a
reflection of the high rates of survival for melanoma found in the
local stage (98%). When melanoma has either regional or distant
spread, the five-year survival rates are considerably lower:62% and
15%, respectively. Approximately 9,480 individuals were antici-
pated to die from melanoma in 2013. The mortality rate for whites
under the age of 50years has declined rapidly in the last decade.
Unfortunately, the rate has either remained stable or has increased
in other groups during the same period. As with the other forms
of skin cancer, melanoma affects whites more than other races,
with the lifetime risk being 23 times higher in whites than African
Americans.1 Like other skin cancers, melanoma is most common
in areas with high sun concentration, with Australia and New
Zealand having the worlds highest incidence rates.1,18
Etiology
Ultraviolet light appears to be important in the development of
melanoma.19 Although melanoma can occur in as little as two
years between sun exposure and the development of melanoma,
studies of the incidence of melanoma in individuals who moved
to a sunny climate and those who have lived there all of their lives
suggest that the chronic duration of the exposure is important.
Individuals with fair skin or freckles, with red or blond hair, who
burn easily or have had severe sunburns, are at increased risk of
developing melanoma. For these individuals in particular, acute,
intense, and intermittent exposure, which increases the likelihood
of a blistering sunburn, increases the likelihood of melanoma.
There may also be a relationship between hormones and genet-
ics and melanoma. In particular, melanoma is more common in
women, is rare before puberty, and may change after pregnancy.
In addition, individuals in families with various genetic abnor-
malities are at greater risk of developing melanoma.19
Prevention and Screening
As with the non-melanoma skin cancers, staying out of the
sun during periods of high sun intensity, wearing UVA- and
UVB-protecting sunscreen, as well as sun-protective clothing, can
help reduce the risk of melanoma. Although, as previously noted,
there are no guidelines for the routine screening and diagnosis
130 Section IV psychological issues related to site of cancer
of melanoma, for those who have already been diagnosed with
melanoma, skin self-examinations are recommended as follow-up
care in order to quickly identify any recurrence or new lesions. As
recently noted by Korner etal.,20 however, only a small fraction of
individuals at risk for developing subsequent melanoma practice
regular, thorough, skin self-examination.
Diagnosis
The majority of melanomas are diagnosed after observation of
changes in an existing lesion or the development of a new lesion.
The ABCD acronym is used to define the issues that may be an indi-
cation of skin growths that warrant further attention:(1)asym-
metry:if one side of the lesion is not identical to the other side;
(2)border:an irregular border or notching; (3)color:darkening, chemotherapy (carboplatin, cisplatin, paclitaxel, temozolomide,
multiple colors, or spread of color; (4) dimension: a sudden or
continuous enlargement in either size or elevation. In addition
to these, five other changes can be a warning sign of a potential
melanoma. These include (5)characteristics of the surface:scaling
or crusting, oozing, or bleeding; (6)appearance of surrounding
skin: redness, swelling, or inflammation; (7) consistency of the
mole; (8)sensation:itching, tenderness, or pain; and (9)sudden
appearance of a new mole.21
Once diagnosed, staging of melanomas occur through the
American Joint Committee on Cancer (AJCC) staging system.22
They are also measured by Clarks Level and Breslow Depth.23,24
The AJCC staging system is based on the tumor, node, and metas-
tases involvement. Stages range from 0IV, with higher stages
representing more advanced disease. Stage 0 (Tis), defined as
melanoma in situ, is the least involved, whereas Stage IV (any T,
N, and M) is defined by distant involvement of melanoma in skin,
organs (e.g., brain, lung, liver, bone), and lymph nodes.18 Both
Clarks Level and Breslow Depth describe the degree of invasion of
the tumor through the skin. Whereas Clarks Levels are classified
based on which portions of the skin the tumor has passed through
(i.e., from the epidermis to the subcutaneous fat), Breslow Depth
uses an ocular micrometer to measure the tumor from the base of
the tumor to the deepest melanoma cell. The strongest predictor
of survival is the depth of the melanoma at diagnosis, with greater
invasion associated with poorer prognosis.25,26
There are five different types of melanoma, according to the
AJCC: lentigo maligna melanoma, superficial spreading mela-
noma, nodular melanoma, acral-lentiginous melanoma, and
mucosal lentiginous melanoma. The first three types comprise
80%85% of all diagnosed melanomas. Superficial spreading
melanoma, comprising 70% of all melanomas, may take a long
time to develop; they are usually composed of many shades of
brown, black, tan, red, and white, and usually appear flat with
irregular borders. They are most common on the head, neck,
trunk, and extremities of individuals between 40 and 50years of
age. Approximately 10% of all melanomas are classified as lentigo
maligna. These melanomas are most common on sun-exposed
areas of the skin and are most common in individuals over the
age of 70years. Commonly large, tan to dark brown, with irreg-
ular borders, these lesions may have been present for 515years
before becoming invasive. Ten to fifteen percent of melanomas
are nodular malignant. Unlike the two previous forms, which
may take years to develop, nodular malignant melanomas dem-
onstrate rapid vertical growth, are dark and uniform in color, and
may develop on any bodily surface. They also occur more often
in individuals between the ages of 40 and 50. The final two forms
of melanoma, acral and mucosal lentiginous, occur on the palms,
soles, subungual, or mucosal (i.e., mouth, throat, anus, vagina, or
conjunctiva) areas of the body. These occur more often in indi-
viduals with dark skin, are large, and are often seen in individuals
over 59years.14
Treatment
Surgical excision is usually sufficient if the melanoma is diagnosed
in an early stagethe key being to remove the tumor with suf-
ficient margins to ensure excision of cancerous cells. For more
advanced tumors, however, treatment with immunotherapy
(ipilimumab, interleukin-2, interferon-alfa) with or without
vinblastine), targeted therapy (vemurafenib), radiation, limb
perfusion, lymph node dissections, adjuvant therapy with either
interferon or dacarbazine, or human monoclonal antibodies are
utilized.26 Side effects from these additional therapies can be sig-
nificant and can affect patients quality of life.21
Prognosis
The prognosis for early-stage melanomas, which comprise roughly
84% of melanoma diagnoses, is excellent with a 95%100% cure
rate, and a five-year survival rate of 98%. Unfortunately, unlike
the other skin cancers, melanoma is likely to metastasize. With
regional and distant metastases, the five-year survival rates drop
dramatically (regional spread:62%; distant spread:15%), further
highlighting the need for early diagnosis and the identification of
newer treatments that can extend survival.1
Presence of Psychological Distress
Several studies have examined the presence of psychological dis-
tress in individuals diagnosed with melanoma. Atkinson etal. 27
reported that 10% of women treated for early stage melanoma
exhibited depressive symptoms, with 12% experiencing clinically
high levels of intrusive thoughts. Related to their distress were
disruptions in psychological well-being and concerns with their
appearance. This result is somewhat lower than the findings of
a systematic review of psychological stress in melanoma survi-
vors, which found that elevated levels of distress and anxiety were
experienced by roughly 30% of melanoma survivors.28 The con-
cern and associated fear of developing a subsequent melanoma is
present in almost 75% of patients with melanoma, however, and
suggests that interventions are needed for dealing with this and
associated distress.29,30
Distress, Fear, Pain, and Disfigurement
Many people with melanoma and their caregivers face practical,
emotional, and psychological demands, in addition to the physi-
cal effects of the disease and treatment. Challenges in melanoma
include the existential fear faced by anyone with a diagnosis of
a life-threatening disease, pain and discomfort associated with
treatment, and body image changes associated with disfiguring
surgery.31 Patients with deeply indented scars, such as those that
occur with skin grafting following removal of skin, subcutaneous
and deep fascia, as well as those whose scars are longer than they
anticipated, may be particularly distressed. This is variable, how-
ever, as a study by Bergenmar etal.32 did not find any difference in
HRQOL or emotional distress between individuals with cutaneous

melanoma who had surgery with either 2-cm or 4-cm margins.
In both groups, emotional functioning, insomnia, anxiety, intru-
sions, and avoidance improved over time, up to 15months after
the start of the study. The impact on families of those with mela-
noma is also considerable, as they share in the fears of relapse, the
traumas of treatment, and the sadness of late-stage disease.
While most studies have found that patients adjust well to mela-
noma in the long term, distress is common. In a prospective sur-
vey of 144 patients with stage Imelanoma who did not relapse, 21%
reported moderate to high levels of distress 3months after exci-
sion, 26% at 7-month follow-up, and 29% at 13-month follow-up.31
Patients psychosocial needs are significant, and frequently go
undetected and unmet. Bonevski etal. 33 assessed the perceived
needs of a sample of patients attending the Newcastle Melanoma
Unit. Patients reported the most unmet needs in relationship to
health information, psychological issues, and melanoma-specific
issues. The authors recommended that patient needs should be
monitored routinely in oncology care so that groups of patients
with specific needs could be identified.33
Interventions Following Diagnosis
Psychological interventions following a diagnosis of melanoma
have been primarily cognitive-behavioral, incorporating health
education, stress management, illness-related problem-solving
skills, and psychological support. The goals of each are to increase
knowledge of the disease, improve behaviors, and/or address emo-
tional distress. Recent systematic reviews of the literature34 have
identified 16 intervention studies focused on melanoma knowl-
edge, performance of skin self-examination, cost-effectiveness,
satisfaction with clinical care, survival benefits of psychological
interventions, and psychological outcomes. Eleven of the stud-
ies were randomized controlled clinical trials (RCTs). The find-
ings of these studies suggest that psychological interventions can
improve psychosocial outcomes for melanoma patients, including
reducing general mood disturbance, distress, and anxiety. 35-38
Studies reported large effects at 6months following the start of
treatment, although longer-term effects have occasionally dissi-
pated by 12months, a time by which most patients report feeling
better.36 Other studies have reported small short-term effects38 or
large effects despite a small sample size.37
Among studies targeting coping, an increase in active cop-
ing or a reduction in passive coping in the intervention groups
suggests that interventions can also help patients to take active
steps to cope with their illness. 36 Importantly, one study37 dem-
onstrated that psychosocial interventions can not only reduce
patients distress, but also reduce in a cost-effective manner. In
this study, a small RCT of cognitive-behavioral therapy (CBT) was
conducted for patients with heterogeneous melanomas who were
reporting clinically significant levels of distress. Only 38 patients
participated in the study, which was nonetheless able to report a
significant reduction of distress at 3months after intervention for
the CBT group (p=0.005). CBT was marginally more expensive
($0.49 per minute) than the cost to nursing staff of dealing with
distress-driven phone calls during standard care ($0.41 per min-
ute). The cost/benefit ratio (total costs/change in distress), how-
ever, was significantly lower for CBT. The cost to change distress
in standard care was > $402 for a one-point change in distress
versus $7.66 for CBT. Including reimbursement rates in place at
the time of the study, it was noted that CBT would generate $1.16
Chapter19 skin neoplasms and malignant melanoma 131
per minute in revenue, while standard care would cost the hospital
$0.40 per minute, further demonstrating the cost-effectiveness of
instituting a CBT program.
A qualitative study explored patient perceptions of psycholog-
ical intervention to try to identify the active component of these
interventions. 39 Twenty-six patients with metastatic melanoma
who were participating in an RCT of individual CBT versus
relaxation training were interviewed about the benefits of ther-
apy by a researcher blinded to allocation. Patients reported simi-
lar benefits regardless of allocation, which pertained to receiving
patient-centered care from someone outside their family whom
they trusted and to whom they could speak openly. Thus non-
specific therapist factors appeared to be more important than
the actual therapy delivered. However, changes in coping style
reported in other studies35,36 suggest that skill development is
also an important intervention component. This conclusion is
supported by a cancer-wide systematic review of psychologi-
cal interventions, which suggested that structured interven-
tions may offer more benefit than those of a purely supportive
nature.40
The positive findings regarding the efficacy of psychologi-
cal intervention in melanoma patients reflect the wider find-
ings found in heterogeneous cancers. The National Institute for
Clinical Excellence (NICE) guidelines 41 recently reviewed evi-
dence for the efficacy of psychosocial interventions in all cancer
patients. Three systematic reviews or meta-analyses of good qual-
ity, four systematic reviews or meta-analyses of poor quality, four
RCTs of poor quality, and one observational study of fair quality
were identified. The majority of studies reported benefits, with few
inconclusive studies. Benefits included both affective and physical
improvements, improved coping, and better understanding. Most
recent guidelines on cancer care recommend that psychosocial
interventions be made available to all cancer patients. Important
for patients with melanoma, however, is the recognition that the
majority of patients will not be experiencing clinically relevant
levels of self-reported emotional distress (anxiety/depression)
and will experience limited impact on health-related quality of
life. Thus, it will be important for any interventions to be tailored
in such a manner as to have the greatest relevance to patients.
Otherwise, engagement in interventions programs and potential
benefit from them will be limited. 34
Influence of Psychosocial Interventions on Prognosis
Only one study has explored the impact of a psychosocial inter-
vention on prognosis in patients with melanoma. 35 All patients
were stage I, with a relatively good prognosis. Immediately
after the intervention (primarily cognitive-behavioral, incor-
porating health education, stress management, illness-related
problem-solving skills, and psychological support) there was a
significant increase in one of the large granular lymphocyte sub-
populations, CD8. At six months, the intervention group had an
increased number of natural killer cells and an increased cyto-
toxicity, a decrease in a major T-cell subpopulation-CD4 helper/
inducer cells, and some increases in the percentage of larger gran-
ular lymphocytes. This was correlated with change in depression
and anxiety. At a 10-year follow-up to one of the seminal studies
assessing the impact of a psychological intervention, Fawzy etal. 35
reported that participation in the intervention did not lower the
risk of recurrence, but decreased the risk of death threefold.
132 Section IV psychological issues related to site of cancer
Despite these promising findings, results of psychosocial stud-
ies in cancer reducing mortality generally have been equivocal.
Arecent systematic review concluded that there was insufficient
evidence for a relationship between psychosocial interventions
and survival of cancer, given methodological flaws, contradic-
tory findings, and recent advances in clinical diagnostic tools and
treatments that allow control group participants to survive for
longer periods of time.42 Further research is required to establish
the impact of psychosocial interventions on prognosis in patients
with melanoma.
CONCLUSIONS
Although skin neoplasms and melanoma continue to be preva-
lent, the fact that almost all of them are 100% curable if diagnosed
and treated early is extremely positive. Nevertheless, the fact that
some melanomas are not diagnosed until they are in an advanced
stage, and the increasing incidence in some age groups and geo-
graphic locations, suggests that there continues to be a need for
intervention on both group and individual levels.
On the individual level, monthly skin self-examination and
physician examination as part of annual physical examinations
could increase the likelihood of finding skin cancers in early
stages. Currently, a thorough skin examination is not a consistent
part of annual physical examinations. On a societal level, increas-
ing awareness through public health campaigns and the cre-
ation of sun-friendly playgrounds (i.e., those with areas of shade
above the play equipment) and beaches (e.g., through provision
of free umbrellas) would convey the importance of sun safety.
The increase in SPF clothing lines, sunless tanning products, and
availability of SPF sunscreens is a positive step, although the con-
tinued proliferation of indoor tanning salons potentially sends a
mixed message that artificial sun is all right.
Finally, there is a continued need for the innovation of new
treatments for advanced melanoma whose survival rates continue
to be a meager 15%. It has been over 15years since the Eastern
Cooperative Oncology Groups protocol 1684 demonstrated some
benefit in survival for adjuvant treatment with interferon-alpha
(IFN-).43 Until recently, various chemotherapeutic and biologi-
cal combinations and single agents, vaccines, and gene thera-
pies have been tried, without any significant increase in overall
survival. The increased development of targeted therapies that
focus on tumors with damaged genes (BRAF, c-kit), however, has
recently resulted in improvements in overall survival among indi-
viduals with those damaged genes. Nevertheless, melanoma has
not been cured, and the survival rates for metastatic disease are
still low. As such, the assessment of psychological distress and
the provision of psychosocial interventions to deal with the side
effects of an advanced cancer diagnosis and treatment will con-
tinue to be necessary.
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28. Kasparian N, McLoone J, Butow P. Psychological responses and cop-
ing strategies among patients with malignant melanoma:a systematic
review of the literature. Arch Dermatol. 2009;145(12):14151427.
29. McLoone JK, Kasparian N, Meiser B, Butow P, Barlow-Stewart K,
Charles M, etal. Melanoma risk, clinical care and patients fears of
melanoma recurrence:what is the interplay between these factors?
Asia Pac J Clin Oncol. 2011;7:157.
30. Thewes B, Butow P, Zachariae R, Christensen S, Simard S, Gotay C.
Fear of cancer recurrence:a systematic literature review of self-report
measures. Psycho-Oncology. 2012;21(6):571587.
31. Brandberg Y, Mansson-Brahme E, Ringborg U, Sjoden PO.
Psychological reactions in patients with malignant melanoma. Eur J
Cancer. 1995;31A(2):157162.
32. Bergenmar M, Mansson-Brahme E, Hansson J, Brandberg Y. Surgical
resection margins do not influence health related quality of life or
emotional distress in patients with cutaneous melanoma:results of a
prospective randomised trial. J Plast Surg Hand Surg. 2010;44:146155.
33. Bonevski B, Sanson-Fisher R, Hersey P, Paul C, Foot G. Assessing the
perceived needs of patients attending an outpatient melanoma clinic.
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34. McLoone J, Menzies S, Meiser B, Mann G.J., Kasparian NA. Psycho-
educational interventions for melanoma survivors:a systematic
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brief, structured psychiatric intervention on survival and recurrence
at 10-year follow-up. Arch Gen Psychiatry. 2003;60(1):100103.
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40. Bottomley A. Psychosocial problems in cancer care:a brief
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41. National Institute for Health and Clinical Excellence. Guidance on
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G, etal. Survival after a psychoeducational intervention for patients
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43. Kirkwood JM, Strawderman MH, Ernstoff MS, Smith TJ, Borden EC,
Blum RH. Interferon alfa-2b adjuvant therapy of high-risk resected
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EST 1684. J Clin Oncol. 1996;14(1):717.
 CHAPTER20
Breast Cancer
Tish Knobf
Breast cancer accounts for 29% of all new cancer cases in the
United States in 2014, with an estimated 232, 670 cases of invasive
cancer and 62, 570 of in situ cancer in women.1 Cancer remains
the primary cause of mortality for women ages 4079. There is a
significant disparity in five-year survival rates between African
American (79%) and non-Hispanic white women (92%), and
African American women with breast cancer have a higher mor-
tality (30.8 in 100,000) compared to non-Hispanic white women
(22.7 in 100,000). 1 The past two decades have identified the contri-
bution of genetic and phenotypic alterations to poorer outcomes
for African American women with breast cancer, but lower socio-
economic status, obesity, access to care, more advanced stage at
diagnosis, worse tumor characteristics, and healthcare providers
and the healthcare system are multifactorial contributors.2 Despite
an overall higher incidence of breast cancer among non-Hispanic
white women, younger African American women have a higher
incidence rate and they are disproportionately diagnosed with the
subtype triple negative breast cancer (TNBC), which raises issues
for the timing of screening, early detection, and novel treatment
approaches to bridge the disparity gap.3
In the past ten years since the Institute of Medicine published
the report Meeting Psychosocial Needs of Women with Breast
Cancer,4 there have been many advances in understanding the
biology of the disease, new approaches for diagnosis, identification
of tests for predicting prognosis and treatment decision-making,
and changes in primary and adjuvant therapies, all of which con-
tribute to the complexity of the experience and influence a wom-
ans decision-making process and psychosocial adjustment to the
diagnosis and treatment. More widespread genetic risk testing,
routine use of oncotyping, increased utilization of magnetic reso-
nance imaging (MRI), dramatic rise in prophylactic mastectomy,
advances in reconstructive surgery, identification and manage-
ment of TNBC, changes in the surgical management of the axilla,
identification of genetic alterations for targeted therapies, and a
greater role for neo-adjuvant therapy are salient examples of the
dynamic changes over the past decade that impact a womans
experience.
PSYCHOLOGICAL ISSUES ACROSS
THEBREAST CANCER CONTINUUM
Risk factors for psychological distress for women newly diagnosed
with breast cancer include younger age, pre-existing psychologi-
cal problems, presence of comorbid illness, limited available social
support, lower educational levels, and being an ethnic minor-
ity.4,5 Factors such as interpersonal characteristics, preferences
for information, status of family and partner relationships, sex-
ual orientation, role of spirituality in ones life, patient-provider
communication, and the degree of physical symptom distress can
positively or negatively influence emotional well-being and psy-
chosocial adjustment.5,6 Many of these factors will be addressed
in the subsequent sections across the phases of the breast cancer
continuum.
Diagnostic Phase
Anxiety, uncertainty, and psychological distress appear uni-
versal in the diagnostic phase. Iwatani and colleagues7 assessed
women for anxiety and depression at three time points: before
and after mammography and after pathologic findings, using the
Hospital and Anxiety (HADS) instrument. Twenty-two percent
of women with normal mammograms and 46% of women with
abnormal mammograms reported HADS scores > 11. Following
pathologic findings for women with abnormal diagnostic tests,
28% with a benign diagnosis and 68.6% of women with a breast
cancer diagnosis reported HADS scores > 11. Greater anxiety and
depression at baseline were predictive of higher scores in women
diagnosed with breast cancer. In a quality improvement project
for psychosocial distress screening, 88 women attending a breast
surgical center were assessed using the National Comprehensive
Cancer Network (NCCN) distress thermometer.8 The average dis-
tress score reported was 5.7, with 35% of women rating distress >
4.Uncertainty of the biopsy outcome (e.g., benign vs. malignant)
was the predominant source of the distress. Similarly, anxiety
and uncertainty persist in the period between a positive biopsy
and prior to a definitive primary therapy. Women described this
period as being in suspense and included the conflict of feeling
healthy but needing to wait, an emerging existential awareness,
and a tension of informing others, particularly a spouse and fam-
ily members.9
PRIMARY MANAGEMENT OF THE BREAST
For the majority of women, initial decision-making relates to
the primary treatment of the breast, with either breast conser-
vation surgery (local tumor removal) with radiation therapy,
or mastectomy with or without reconstruction. For selected
patients, this initial decision-making may also include consid-
eration of contralateral prophylactic mastectomy. These options

are presented for women with invasive as well as ductal carci-
noma in situ (DCIS). DCIS accounts for approximately 20% of
all breast cancer in the United States, and due to a higher inci-
dence of local recurrence with surgical removal only, women
with DCIS who do not elect mastectomy need to consider breast
conservation surgery with a course of radiotherapy.10 For a
subset of patients, such as those with TNBC, those with locally
advanced disease, or those with early stage but larger tumors,
initial decision-making may also include neo-adjuvant systemic
therapy as an option.11
Breast Conservation Surgery with Radiotherapy
Whole breast irradiation therapy for six weeks is the standard
approach for early stage breast cancer (0 to IIIA), although many
centers and clinical trials offer accelerated radiation, either deliv-
ered externally over a period of one to three weeks or via an
implanted device.12 Fatigue is the most common side effect of
radiation, whether provided via the standard six- to seven-week
treatment or the accelerated delivery method.13 Skin changes,
sensation changes, and breast swelling follow a similar trajectory
to the symptom of fatigue, increasing in frequency and severity
by mid-treatment through the end of radiotherapy, with grad-
ual improvement at three and six months after therapy is com-
plete.13,14 Black women report more frequent and more severe skin
reactions,15 which are associated with pain, psychological dis-
tress, alterations in body image, and interference with daily func-
tion.16 Providers need to increase their skills in assessment and
monitoring of skin changes in patients of color. While cosmesis
is generally rated as good to excellent for the majority of women
who receive breast irradiation, skin reactions, infection associ-
ated with implanted brachytherapy, asymmetry associated with
incision-site reactions, long-term hypopigmentation, and fibrosis
can influence a womans psychological response, especially for
women who are younger.17
Management of the Axilla
Tumor that has spread to the axillary lymph nodes is a signifi-
cant poor prognostic indicator. Axillary lymph node dissection
(ALND) has been a standard approach to staging for prognosis and
treatment recommendations, whether a woman chooses breast
conservation surgery or mastectomy. Agreat deal of short-term
and long-term breast surgical morbidity has been related to
ALND, resulting in sensory changes, functional limitations,
infection risk, and a universally patient-dreaded complication of
lymphedema. Lymphedema occurs in approximately 25%30% of
women with ALND. Lymphedema can be managed but not cured
and is associated with psychological distress, functional limita-
tions, body image concerns, alterations in clothing, pain, and
higher risk of infection, and it significantly impacts all domains
of quality of life (QOL).18 Presence of arm lymphedema demands
a lifetime commitment of self-management to minimize degree of
swelling and complications, such as cellulitis and infection. The
value of ALND continues to be questioned, and the less invasive,
sentinel lymph node biopsy (SLNB) has gradually replaced ALND
for the majority of women.19 The risk for lymphedema with SLNB,
however, remains (with an estimated lower incidence [e.g. 4%5%
range]), but risk factors of obesity, postoperative infection, and
radiotherapy increase overall risk.
Chapter20 breast cancer 135
Mastectomy and Reconstructive Surgery
The goal in the initial decision-making phase, once a woman is
diagnosed with breast cancer, is to offer the option of reconstruc-
tive surgery if a woman is considering mastectomy as a treatment
choice. There are many factors supporting this goal: influence
of surgical procedure for breast removal on reconstruction out-
comes, indication for post-surgical radiotherapy, patient prefer-
ence, patient characteristics that may influence feasibility and
choice of reconstructive procedures, and patient expectations.20
Breast reconstructive choices include placement of an implant
or use of autologous tissue to create the breast mound. Implant
reconstruction is the most common reconstructive choice due
to widespread availability, no donor site needed for tissue, and a
relatively quick recovery.20 Single stage implant reconstruction
is usually indicated for a select group of women, such as those
with relatively small breasts that are non-ptotic.21 For the major-
ity of women desiring implant reconstruction, the most common
approach is placement of a tissue expander, followed by placement
of a permanent implant. Single- or two-stage (tissue expander fol-
lowed by implant) implant reconstruction can be supplemented
with advances in the field with the use of acellular dermal matrix,
which produces a better aesthetic outcome. The advantage of
using a tissue expander prior to permanent implant placement is
to allow the muscle and skin to stretch over time, creating a better
pocket for the implant. The disadvantages of the tissue expander
are multiple visits for injections for the expander (usually begin
23 weeks after surgery with injections of sterile saline every 12
weeks until the optimal volume is reached), 20 which are often
associated with discomfort or pain, and there is a need for a sec-
ond surgical procedure for the permanent implant. Complications
of implant reconstruction include extrusion, implant failure, and
capsular contraction.
Autologous tissue reconstruction includes abdomen-based
options, using the transverse rectus abdominus myocutaneous
(TRAM) flap (pedicle, free, or muscle sparing), deep inferior
epigastric artery perfuse (DIEP) flap, superior inferior epigastric
artery (SIEP) flap, and non-abdomen-based options, specifically
gluteal flap and transverse upper gracilis flap.21
Advantages of autologous reconstruction include a more nat-
ural-looking breast, a long-lasting procedure, and an option for
women with larger breasts. Disadvantages include a longer hos-
pital stay, risk of infection, wound dehiscence, flap necrosis (at
donor and recipient site), longer recovery, donor site morbidity,
and for musculocutaneous flaps (i.e., pedical TRAM flap), changes
in abdominal contour and risk of hernia.20,21 There have been sig-
nificant advances in the free flap procedures, but they are more
complex and require the availability of trained and skilled plastic
and reconstructive surgeons. In addition to the primary recon-
structive surgery, ancillary procedures, specifically creation of the
nipple-areola complex, can be done on an outpatient basis a few
months later. Similarly, some women will choose contralateral
surgery to improve symmetry.
It is estimated that approximately 30% of women who are
offered reconstruction will elect to undergo the procedure.20,22 In
a review of 28 studies on breast reconstruction in 19952008, a
median 23.6% of women had immediate or delayed reconstruc-
tion with high variability, reflected by a range from 4.9% to
81.2%.22 Women who were white, younger, higher socioeconomic
136 Section IV psychological issues related to site of cancer
status, and who were concerned about body image and want-
ing to avoid an external prosthesis were more likely to choose
reconstruction. The disparity in reconstructive surgery between
African American and white women is somewhat explained by
educational level, complexity of decision-making process, and
financial/insurance issues. 23 Patient outcomes that have been
investigated following breast surgery include body image, quality
of life, cosmesis, and psychosocial functioning. For body image,
it is difficult to draw definitive conclusions because of the vari-
ability of instruments used, many of which focus on stigma versus
perceived image or satisfaction.24 With that caveat, the research
suggests that there are small differences among womens evalua-
tion of outcome, with slightly better body image for women who
had breast conservation with radiotherapy or reconstruction
compared to mastectomy;24 no differences were found for QOL
and psychological distress outcomes when women who had mas-
tectomy and immediate or delayed reconstruction were compared
one year following treatment.25
PROPHYLACTIC MASTECTOMY
Decision-making for women who are genetically predisposed to
breast cancer is complex (see Chapter11), and bilateral prophy-
lactic mastectomy is one option that women will consider, espe-
cially if the risk of developing breast cancer is significantly high.
In contrast, for non-genetically predisposed women diagnosed
with early stage breast cancer, the risks vary, and decision-making
to consider a contralateral mastectomy is somewhat less clear.
Surveillance for women with early stage breast cancer includes
clinical breast examination with annual mammography (or MRI).
For women with estrogen positive breast cancer, chemopreven-
tion is generally recommended. Over the past 1015years, there
has been > 100% increase in women with early stage breast cancer
choosing to have a contralateral mastectomy.26 A positive fam-
ily history, younger age, worse tumor characteristics, the experi-
ence of multiple repeated imaging, and heightened surveillance
characterize those women who are more likely to choose contra-
lateral prophylactic surgery. Patient satisfaction and psychologi-
cal outcomes appear predominantly related to the reconstructive
surgery that is done with the prophylactic mastectomy. While
many women report satisfaction with their decision, the type of
informational preparation and actual experience following pro-
phylactic reconstructive surgery have resulted in psychological
distress related to body image, problems with implants, sequelae
of reconstructive surgery procedures, and sexuality.27,28 The over-
whelming positive response of women with either bilateral or
contralateral surgery was the relief of anxiety and worry about
developing a breast cancer.27 Despite the positive attitude among
many women, concerns and distress associated with the outcomes
are critical to address.27,28 For women with implant reconstruc-
tion, they reported not being well prepared for the feel of the
implant, problems (i.e., failure), pain and discomfort with tissue
expander procedures, and the unnatural look of the implanted
breast mound. Sexuality issues focused on the loss of erotic nipple
sensations, and distress about not being informed. For women
with autologous reconstructive surgery, many expressed feeling
unprepared for the length of recovery, numbness, pain, scarring
(two sites: recipient and donor), body image, and the need for
emotional preparation and psychological support.
NEO-ADJUVANT AND ADJUVANT THERAPY
Adjuvant systemic therapy for breast cancer includes chemother-
apy, endocrine therapy, and targeted therapies. Standard adjuvant
chemotherapy regimens commonly span four to six months and
are associated with a varied physical symptom profile, including
but not limited to acute and delayed nausea, fatigue, peripheral
neuropathy, changes in memory and concentration, alopecia,
premature menopause, weight gain, skin and nail changes, joint
pains, and insomnia. Endocrine therapy is indicated for women
with estrogen dependent tumors and is prescribed for five years,
with emerging data on the potential benefit of an additional
five years of therapy.29 Tamoxifen, a selective estrogen receptor
modulator, is used for pre- and postmenopausal women. It has
anti-estrogen properties and weak estrogenic properties, the lat-
ter increasing endometrial cancer and thromboembolic risks.
Aromatase inhibitors (AIs) are recommended for postmenopausal
women. Both Tamoxifen and AIs are associated with menopausal
symptoms of hot flashes, night sweats, sleep alterations, vaginal
discharge (Tamoxifen), vaginal dryness, and dyspareunia (AI).
AI therapy is associated with moderate to severe musculoskeletal
symptoms, resulting in some women discontinuing therapy, 30
compromising the survival benefit. Bone loss is a significant tox-
icity of AI therapy, resulting in a higher rate of osteopenia, osteo-
porosis, and fractures.29
Trastuzumab (Herceptin) is the approved targeted therapy
in the adjuvant setting for women who have Her-2neu overex-
pressed tumors (approximately 20%30% of patients). One year
of adjuvant trastuzumab has been shown to significantly improve
disease-free and overall survival. Cardiac toxicity is the major
concern with Trastuzumab, with a 2%4% overall incidence,
which may be higher in older women and those with pre-existing
cardiovascular risk factors, and higher if combined with chemo-
therapy versus administered sequentially. 31 Several other targeted
agents with proven efficacy in the metastatic setting are currently
in adjuvant clinical trials, and their symptom profile is yet to be
fully determined.
Physical symptoms are frequently associated with psychologi-
cal distress, especially if the patient did not feel prepared and the
physical symptoms were rated as moderate to severe. 32 Patients
need to be adequately prepared with understandable informa-
tion,6 as feeling unprepared for what is going to happen leads to
greater uncertainty, distress, and ineffective coping. Neuropathy,
nausea and vomiting, fatigue, sexuality problems, cognitive
changes, and sleep alterations are reviewed in Section V of this
volume (Chapters2531). For women with breast cancer, meno-
pausal symptoms, weight gain, and myalgias/arthralgias repre-
sent unique adjuvant therapy-associated symptoms that directly
contribute to psychological distress and poorer QOL outcomes. 33
The increased risk for recurrence and all causes of mortality with
being overweight or gaining weight after therapy and the potential
for discontinuation of AI therapy due to myalgias and arthralgias
can negatively affect a womans emotional well-being.
TRANSITION TO SURVIVORSHIP
The end of treatment and the beginning of the transition into
survivorship are associated with emotional distress, anxiety,
uncertainty, diminished support from providers, healthcare

system, and family, and persistent physical symptoms. 5 By the
end of one year, QOL and psychological adjustment significantly
improve for the majority of women. However, the psychological
responses associated with ending therapy, the process of rein-
tegrating into life, and addressing the expectation to return to
normal have resulted in emotional highs and lows over the first
year. The vulnerability associated with cancer and the side effects
of cancer treatment make many women question the concept of
normal, or even the suggested new normal, as they perceive
themselves as forever changed by the experience. Many will
embrace the pink ribbon breast cancer survivor image, but some
women feel that the emotional concerns of uncertainty and fear
of recurrence are contrary to a perception of being a survivor. 5
How well a woman adjusts over the course of the first year can
also depend on persistent physical symptoms, degree of symp-
tom distress, informational adequacy to manage symptoms,
and known risks for late effects, such as osteoporosis and car-
diovascular disease. Younger age, limited social support, poor
communication with providers, personal life stressors, prior
or pre-existing psychological problems, and decreased ability
to work or carry out desired activities can further challenge a
womans psychological recovery.
TRAJECTORY OF THE BREAST
CANCEREXPERIENCE
The trajectory of breast cancer involves how women process the
experience from diagnosis, through treatment, and into sur-
vivorship (long-term survival or a shortened survival due to a
recurrence, second cancer, or comorbid illness). It is reflective of
womens responses and the behaviors that they engage in to man-
age the experience. Amiddle-range theory of carrying on34 has
been proposed to explain the process (Figure 20.1). How well a
woman carries on across the trajectory from diagnosis through
survivorship is dependent on her level of psychological distress
and adjustment. Based on models of psychological response to
traumatic events by Bonanno, 35 four distinct trajectories of psy-
chological distress and functioning for women diagnosed with
breast cancer have been proposed: chronic, delayed, recovered,
and resilient.5,36 Chronic reflects persistent high levels of distress,
delayed is a delay in experience of high distress with eventual reso-
lution, recovered is distress that resolves over time, and resilient is
Being Dealing
Focused with
Uncertainty Developing
Awareness
Balancing
Figure20.1 Carrying on:a recursive process of behaviors for
patients.Reprinted with permission from Knobf MT, Being prepared:essential to
self-care and quality of life for the person with cancer, Clinical Journal of Oncology
Nursing. 2013;17(3):256. Copyright 2013 by Oncology Nursing Society.
Chapter20 breast cancer 137
low-level distress throughout, despite transient changes in func-
tion or symptoms.
Based on the literature and clinical experience, these four tra-
jectories can easily be identified with patient scenarios. Achronic
trajectory might represent a younger woman with a history of a
mood disorder who experiences treatment-induced menopause
and one who has competing life demands of school-age children
and full-time employment. The recovery trajectory represents
the majority of women who experience some level of physical
and psychological symptoms distress during treatment, but by
one year later have improved significantly and successfully inte-
grated the experience into everyday life. The delayed trajectory is
similar to the recovery one, except that some additional traumatic
event or complication occurs that creates additional stress, delay-
ing the recovery process. Resilience could describe a mid-life or
older woman who experiences minimal symptom distress during
treatment, has a strong social support network, reports being well
informed of what to expect, and has effective communication with
her providers.32 In a follow-up study of breast cancer survivors,
psychological distress in the first eight months following diagno-
sis was predictive of psychological distress at six years after ther-
apy. 37 Women with low-level distress in the first year had the best
psychosocial outcomes and, in contrast, those with high distress
had worse psychosocial adjustment. Psychosocial distress screen-
ing of women with breast cancer at important transitions (e.g.,
during and at end of therapy) (see Chapter48) can help identify
which breast cancer survivors are at greatest risk, so that providers
can most appropriately use their resources.
RECURRENCE:TRANSITION
TOLONG-TERM THERAPY
ANDPALLIATIVECARE
Over the past two decades, there has been significant progress
in understanding the biology of metastatic breast cancer and
response to therapy by subtypes.38 Endocrine therapy is first-line
choice for women with estrogen receptor positive disease, which
can produce long-lasting responses. For women with metastatic
Her-2-neu overexpression, targeted agents with trastuzumab,
lapatinib, and pertuzumab have all been demonstrated to improve
outcomes. Chemotherapy remains an important treatment option,
but the paradigm has somewhat shifted away from intensive che-
motherapy regimens, attempting to balance response and length
of predicted survival with quality of life.
Survival for women is better if estrogen receptor positive and/
or Her-2 neu overexpression due to specific metastatic sites, with
average responses to therapy and available agents. However, few
women with metastatic breast cancer are alive at five years, with the
average survival between two and three years. Communication,
support, and introducing palliative care early on are essential
as women transition from first- and second-line therapies and
beyond (see Chapter34).
In summary, heterogeneity characterizes not only the biol-
ogy of breast cancer but also the women who are diagnosed. As
we personalize treatment based on the biology of the cancer, we
need to personalize our interventions to address risk factors for
psychological distress across the trajectory of the breast cancer
continuum.
138 Section IV psychological issues related to site of cancer

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cer. Canc Nurs. 2005;28:210218.
symptoms during the first year of adjuvant therapy with either
15. Ryan JL, Bole C, Hickok JT, etal. Post-treatment skin reactions
exemestane or tamoxifen in early stage breast cancer:report of a
reported by cancer patients differ by race, not by treatment expecta-
tamoxifen exemestane adjuvant multicenter trial substudy. J Clin
tions. BJ Cancer. 2007;97:1421.
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16. Schnur JB, Ouelette SC, DiLorenzo TA, Green S, Montgomery GH.
34. Knobf MT. Carrying on:The experience of premature menopause in
Aqualitative analysis of acute skin toxicity among breast cancer
women with early stage breast cancer. Nurs Res. 2002; 51:917.
radiotherapy patients. Psycho-Oncology. 2010;20:260268.
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17. Walijee JF, Hu ES, Ubel PA, Smith DM, Newman LA, Alderman
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AK. Effect of esthetic outcome after breast-conserving surgery
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on psychosocial functioning and quality of life. J Clin Oncol.
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doi:10.1200/JCO.2013.54.1177
 CHAPTER21
Sarcoma
Michelle R.Brown, James Klosky, and Sheri L.Spunt
Bone and soft tissue sarcomas are a heterogeneous group of
cancers that arise from primitive mesenchymal cells through-
out the body. Population-based data suggest that these cancers
account for approximately 0.9% of cancer cases overall, but
13% of cancers in pediatric patients. Multimodality therapy,
including various combinations of surgery, chemotherapy, and
radiotherapy, is generally necessary for cure. Approximately
two-thirds of patients with sarcomas survive for five years
from the date of diagnosis. Thus sarcomas produce consider-
able morbidity as well as mortality. This chapter reviews the
major clinical features, treatment, and outcomes of patients
with bone and soft tissue sarcomas, and addresses the major
psychological issues facing individuals affected by these rare
tumors.
SOFT TISSUE SARCOMAS
Soft tissue sarcomas are about four times more common than bone
sarcomas, and there are approximately 10,000 new cases in the
United States annually. At least 30 different histologic subtypes
exist. In pediatric patients, rhabdomyosarcoma is by far the most
common subtype, whereas in adults there is no predominant his-
tology. Soft tissue sarcomas are somewhat more common in males
than in females and are slightly less common in the Hispanic pop-
ulation. The incidence of soft tissue sarcomas increases with age.
Most soft tissue sarcomas are sporadic, although a small per-
centage of patients have an underlying risk factor. The most
frequent predisposing conditions are Li-Fraumeni syndrome
(germline p53 mutation), hereditary retinoblastoma (germline RB
mutation), neurofibromatosis type I(NF-1), HIV infection, and
radiation exposure.
Soft tissue sarcomas usually present as a painless mass, although
they may impinge on other normal structures, thereby produc-
ing other symptoms. These tumors may arise virtually anywhere
in the body. Rhabdomyosarcoma, which occurs primarily in the
pediatric age group, is most common in the head and neck region,
in the genitourinary structures, and in the extremities. Other soft
tissue sarcomas most often affect the extremities or body wall,
although certain subtypes have an anatomic site predilection (e.g.,
uterine leiomyosarcoma). Among the small proportion of patients
who present with metastatic disease, most have lung involvement.
Lymph node metastases are uncommon except in selected his-
tologies; bone and bone marrow disease are uncommon except in
rhabdomyosarcoma.
The approach to treatment of soft tissue sarcomas depends on
the histologic subtype and grade of the tumor, its size, whether it
is amenable to surgical removal, and the extent of the disease.1,2
Surgery is the mainstay of treatment for patients with soft tissue
sarcomas other than rhabdomyosarcoma, and may be curative
in some cases. Radiotherapy is often needed if the tumor can-
not be adequately excised; the dose required is relatively high.
Chemotherapy is routinely used only for patients with rhab-
domyosarcoma, where the standard regimen is vincristine and
actinomycin D, with or without cyclophosphamide. The utility
of chemotherapy in other histologic subtypes is controversial,
although it is most commonly used for patients with tumors not
amenable to surgery, for those at high risk for the development
of metastatic disease (principally those with large, high-grade
tumors), and in a palliative context for those with metastatic dis-
ease. The most active agents in the treatment of soft tissue sar-
comas are ifosfamide and doxorubicin, although various other
regimens are used for specific histologic subtypes.
Treatment of soft tissue sarcomas is associated with a variety
of potential medical late effects. 3 Children and adolescents are
at greater risk for certain complications because of their incom-
plete growth and development at the time of treatment. Young
patients also have more time to develop late-occurring compli-
cations, such as secondary neoplasia, which may develop many
years after treatment. Surgery is often very aggressive, since for
most histologic subtypes cure depends to a significant extent on
complete removal of the tumor. As a result, patients may lose
expendable organs or experience functional impairment or physi-
cal deformity. Radiotherapy may contribute to organ dysfunc-
tion, functional deficits, and cosmetic outcomes, particularly
in young patients who have not yet completed their growth and
development. Radiotherapy may also induce the development of
second cancers. Long-term chemotherapy complications include
cardiomyopathy (doxorubicin), infertility and gonadal hormone
deficiency (cyclophosphamide, ifosfamide), renal insufficiency
(ifosfamide), and secondary neoplasia (cyclophosphamide, ifos-
famide, doxorubicin).
BONE SARCOMAS
Bone sarcomas are considerably less common than soft tissue
sarcomas, with approximately 2400 patients diagnosed in the
United States each year. The most common bone sarcomas are
osteosarcoma, chondrosarcoma, and Ewing sarcoma. Each is
140 Section IV psychological issues related to site of cancer
slightly more common in males than in females. Ewing sarcoma is
particularly rare in black patients. Osteosarcoma and Ewing sar-
coma are largely diseases of adolescents and young adults; 30% of
osteosarcoma cases and 6% of Ewing sarcoma cases are reported
in patients aged 40years and older. Conversely, chondrosarcoma
is typical in older patients, with over 70% of cases reported in
patients aged 40years and older.
As is the case with soft tissue sarcomas, most bone sarcomas are
sporadic, although a small proportion of patients have an under-
lying predisposition. The most common risk factors for osteo-
sarcoma are hereditary retinoblastoma (germline RB mutation),
Li-Fraumeni syndrome (germline p53 mutation), Pagets disease,
and radiation exposure. Approximately 10% of chondrosarcomas
arise within a benign lesion, and this tumor also may occur after
radiation exposure. There are no known risk factors for Ewing
sarcoma.
Most bone tumors present with pain, swelling, and, in some
cases, limited range of motion of the affected area. The most com-
mon sites of origin of osteosarcoma are in the bones around the
knee and in the upper arm near the shoulder; it is often mistaken
for an athletic injury because of its location and predilection for
adolescents and young adults. Chondrosarcoma most often occurs
in the pelvis and lower leg but can also affect the upper arm and
ribs. Typical sites of Ewing sarcoma are the pelvis, the long bones
of the arms and legs, and the ribs. Tumors of the pelvis and ribs
may grow very large before symptoms cause patients to seek medi-
cal attention. Asmall proportion of patients have metastatic dis-
ease at the time of initial presentation. The most common site
of bone tumor metastases is the lung; spread to other bones is
less common. The bone marrow may also be involved in Ewing
sarcoma.
Treatment of bone sarcomas depends on the anatomic location,
tumor grade, extent of disease, and potential for surgical resec-
tion.4 Systemic chemotherapy is given to all patients with Ewing
sarcoma, most of those with osteosarcoma, and few patients with
chondrosarcoma; selected subtypes of osteosarcoma and most
cases of chondrosarcoma do not require chemotherapy. Standard
chemotherapy for Ewing sarcoma includes vincristine, doxo-
rubicin, cyclophosphamide, ifosfamide, and etoposide. Agents
typically used to treat osteosarcoma and chondrosarcoma include
cisplatin, doxorubicin, high-dose methotrexate, ifosfamide, and
etoposide. The mainstay of local tumor control for osteosarcoma
and chondrosarcoma is surgical resection; radiotherapy is used
only for tumors that are unresectable. Ewing sarcoma may be sur-
gically excised, irradiated, or treated with a combination of sur-
gery and radiotherapy. In recent years, limb-sparing procedures
have limited the number of patients requiring amputation.5
The late effects of therapy for bone sarcomas depend on the site
of the primary tumor and the treatment delivered.6 Surgical com-
plications related to limb-sparing procedures include prosthesis
loosening/breakage/infection, bone fracture, limb length discrep-
ancy with secondary scoliosis, and altered gait pattern. Amputees
may require stump revisions due to various complications, may
experience chronic phantom pain, and may have difficulty find-
ing a comfortable, functional, and cosmetically appealing exter-
nal prosthesis. Radiotherapy impairs bone and soft tissue growth,
resulting in limb length discrepancies in skeletally immature
patients, and produces altered physical appearance and dysfunc-
tion of organs within the radiotherapy field. Radiotherapy carries
a risk of inducing second cancers, and treatment of the gonads
produces infertility and gonadal hormone insufficiency. Major
long-term complications of chemotherapy include hearing loss
(cisplatin), cardiomyopathy (doxorubicin), renal insufficiency
(ifosfamide, cisplatin), infertility and gonadal hormone insuf-
ficiency (cyclophosphamide, ifosfamide), and secondary neo-
plasia (cyclophosphamide, ifosfamide, etoposide, doxorubicin,
cisplatin).
PSYCHOLOGICAL ISSUES ASSOCIATED
WITH SARCOMA TREATMENT AND
ITSLATE EFFECTS
Several long-term follow-up studies of childhood cancer survivors
suggest that most adult survivors of sarcoma are psychologically
healthy. For example, Davis and colleagues7 found that adults with
soft tissue sarcoma treated with limb preservation surgery and
adjuvant radiotherapy did not differ from norms on a global rat-
ing of mental health at 12 and 24months after surgery. Similarly,
research from the Childhood Cancer Survivor Study (CCSS) has
demonstrated that although adult survivors of childhood sarcomas
experience more adverse mental health symptoms compared to
siblings,8 both survivors and siblings report lower levels of global
distress (including depression, anxiety, and somatic distress) as
compared to standardized norms, with no differences existing
across tumor type. The majority of survivors reported significantly
better mental health than population norms, which is consistent
with other studies examining psychological functioning across
cancer diagnoses,9 and suggests that a psychological resilience
may develop in response to coping with adverse events. That is,
the experience of childhood cancer (as a patient or sibling) may
inoculate individuals to other negative life experiences and may
contribute to feelings of life satisfaction and overall psychological
well-being. Emerging literature even suggests that survivors may
attribute positive life outcomes to their cancer experience, consis-
tent with the notion of post-traumatic growth.10
Despite these favorable mental health outcomes, sarcoma sur-
vivors are more likely to experience socioeconomic outcomes
that place them at greater risk of poor psychological health.
Specifically, findings from the CCSS indicate that sarcoma survi-
vors compared to siblings report lower levels of income and educa-
tion and lower rates of employment and marriage.8 These results
differ from those of Ottaviani etal.,11 who reported no differences
in level of education, employment, marital status, or health insur-
ance in adult survivors compared with siblings. However, this
study examined only long-term survivors of osteosarcoma from
a single institution. Thus, it is conceivable that as a result of their
cancer treatment or the social disruptions caused by the treat-
ment, adult survivors of sarcoma diagnosed in childhood experi-
ence greater challenges and reduced opportunities with regard to
education, employment, and social relationships. These social out-
comes, in turn, create a subsequent risk for psychological distress
and impaired quality of life, as demonstrated across adult sarcoma
survivors,8 as well as adult cancer survivors more generally.12
In addition to socioeconomic factors, treatment and physical
health-related variables have also been found to impact psycho-
logical functioning (Table 21.1). High-dose chemotherapy (par-
ticularly alkylating agents), cranial and/or chest irradiation, along
 Chapter21 sarcoma 141

Table21.1 Potential Medical and Psychological Effects of Sarcoma Treatment

Treatment Potential Medical Effects Potential Psychological Effects

Surgery
Removal of portion or entire organ
Removal of muscle or other soft tissues
Amputation
Limb-sparing bone resection
Radiotherapy
Radiation to any site
Organ radiation (kidney, liver, heart,
gonads, etc.)
Radiation of bones, muscles, or other soft
tissues
Chemotherapy
Cyclophosphamide, ifosfamide, doxorubicin,
cisplatin, carboplatin, etoposide
Anthracycline (doxorubicin, epirubicn)
Ifosfamide, cisplatin, carboplatin
Cisplatin/carboplatin
Alkylating agent (cyclophosphamide,
ifosfamide)
Organ dysfunction Impaired quality of life, alterations in body image,
sexual dysfunction
Functional impairment, physical deformity
Functional impairment, stump complications requiring As above, plus adaptation to chronic pain
repeated surgery, chronic phantom pain
Prosthesis loosening, breakage, inadequate healing,
or infection requiring repeated surgery or resulting
inamputation; functional impairment; bone fracture;
limb length discrepancy; scoliosis; chronic pain
Second malignant neoplasm Depression, anxiety, post-traumatic stress symptoms or
disorder, impaired quality of life
Organ dysfunction As above, plus sexual dysfunction and fertility-related
distress (for genitourinary or pelvic radiation)
Functional impairment, cosmetic effects, bone fracture As above, plus alterations in body image
Second malignant neoplasm Depression, anxiety, post-traumatic stress symptoms or
disorder, impaired quality of life
Cardiomyopathy
Renal insufficiency
Hearing loss As above, plus body image issues
Delayed or incomplete puberty, hypogonadism, infertility As above, plus fertility-related distress, sexual
dysfunction

with poor health status and current health problems, all positively
correlate with relatively adverse mental health outcomes.8,13
Amputation and Limb-Sparing Procedures
Much research has been conducted examining differences in men-
tal health outcomes among sarcoma patients who have undergone
either amputation or limb sparing as part of cancer treatment and,
in general, few differences have emerged. Among adolescents, for
example, Ginsberg and colleagues14 found no mental health dif-
ferences across treatment procedure (amputation, limb-sparing
surgery, rotationplasty) or across amputation site (above or below
knee amputation). With the notable exception of the Zebrack
etal.8 study, which found psychological benefit associated with
amputation (presumably due to relief associated with a lower risk
of local recurrence and fewer surgeries required for endopros-
thesis revision/complication), current literature suggests no dif-
ferences in mental health outcomes among adults survivors of
childhood cancer treated with amputation or limb-sparing sur-
gery15,16 or among adult-onset sarcoma patients.17
To date, while many sarcoma survivor studies have assessed
functional or psychosocial outcomes, few have examined the
association between these two variables. In an effort to explore the
relationship between physical function and emotional well-being,
Robert et al.16 found that better limb function was a positive
predictor of quality of life outcomes across physical, psychologi-
cal, and social domains. Such findings highlight the need for pro-
viders to emphasize anticipated physical function outcomes with
patients when making decisions related to treatment options.
While there are many similarities between limb sparing and
amputation, each treatment approach carries distinct treatment
demands that should be considered by the patient and his or her
family before consenting for treatment. One of the primary chal-
lenges related to limb sparing is the potential for many surgical
procedures after the initial operation. These surgeries may be due
to endoprosthetic malfunction, infection, nonunion of bones,
fractures or contractures, correction of leg length discrepancy,
or any number of related complications. In addition to surgery,
patients undergoing limb sparing should also anticipate the need
to expend significant time and effort participating in rehabilita-
tion after each operation. Those undergoing amputation will also
have surgery, but typically the postoperative demands are signifi-
cantly reduced compared to limb-sparing procedures. Challenges
for those undergoing amputation include adjusting to the perma-
nent loss of their limb, coping with phantom pain, and adapting
to the use of a prosthesis. Across both procedures, patients may
be at increased risk for changes in body image. For those experi-
encing amputation, time to psychologically adjust to an artificial
limb is often needed, whereas body image issues for limb-sparing
142 Section IV psychological issues related to site of cancer
patients typically relate to the potential for limb deformity and
impaired function. In fact, Robert etal.16 generally found no dif-
ferences in body image scores between patients who underwent
amputation versus limb-salvage surgery. The exception to this was
found among those who underwent late amputation after failed
limb-salvage procedures, as these patients reported more signifi-
cant body image concerns relative to the other survivors. Thus,
adverse mental health outcomes may be more related to the emo-
tional process of giving up on limb preservation rather than the
treatment itself.
Infertility and Impaired Psychosexual Functioning
Infertility is another long-term sequela of sarcoma therapy that
may impact quality of life. Yet, despite the known risk of infertil-
ity after cancer treatment, only 19%24% of young males at high
risk for treatment-related infertility cryopreserve sperm, with
even fewer females undergoing fertility-preserving procedures.18
Barriers to fertility preservation include patient and parent/guard-
ian beliefs and/or misconceptions, as well as physician knowledge
and practice patterns. For example, Kohler et al.19 found that
oncologists lacked knowledge of particular fertility preservation
methods (e.g., IVF, ICSI) and a majority were unfamiliar with the
recommendations published by the American Society of Clinical
Oncology or failed to implement them. Discrepancies were also
noted between oncologists reported attitudes about particular
fertility preservation interventions and the frequency with which
they offered referrals for them. Female pubertal patients were also
referred to fertility preservation specialists less frequently than
males, contributing to the gender disparity noted above. Barton
etal.20 found that despite being equally likely to seek treatment
for infertility, adult survivors of childhood cancer were roughly
half as likely to be prescribed medication compared to siblings.
However, it is unclear whether this discrepancy is a result of
provider bias against treating cancer survivors for infertility or
perhaps patient preference to avoid medication after a history of
extensive treatment. As the American Society of Reproductive
Medicine (ASRM) has recently recognized oocyte preservation
as a safe and effective intervention for fertility preservation, this
technique is now clinically available and provides post-menarchal
females the option of fertility preservation in the cancer context.
As such, future research needs to examine the feasibility of utiliz-
ing this intervention among women diagnosed with sarcoma, and
the effects that this intervention has on psychological functioning.
Impaired psychosexual functioning is another outcome of sar-
coma treatment with direct implications for overall quality of
life. Sexual dysfunction is documented within the research on
adult survivors of childhood cancer,21 with specific impairments
noted in interest, pleasure, arousal, and the ability to achieve erec-
tion and orgasm. However, little research has specifically exam-
ined sexual function among sarcoma patients. Consistent with
other research, Chang et al. 22 found that adult patients receiv-
ing multimodality limb-sparing therapy for soft tissue sarcoma
reported decreased pleasure from sex 6months postoperatively
and decreased interest in and frequency of intercourse extending
12months after surgery.
Sexual dysfunction in survivors of adult cancers has been
closely linked with specific treatments, such as chemotherapy
or radiation, that induce early menopause in women, or surgical
treatments that compromise erectile function in men. Thus, it is
reasonable to presume that much like adult women treated for
gynecologic cancer, patients surviving childhood pelvic tumors
(e.g., rhabdomyosarcoma of the genitourinary tract) may be at risk
for sexual dissatisfaction and dysfunction, lower levels of sexual
desire, and pain during vaginal intercourse. Similarly, men with
a history of treatment for pelvic sarcoma or testicular and para-
testicular tumors requiring retroperitoneal lymph node dissec-
tion may suffer from sexual problems experienced by men after
prostate cancer treatment (e.g, erectile dysfunction, decreased
sexual desire, difficulty reaching orgasm, and pain with ejacula-
tion). However, Bober etal.21 did not find, as expected, sexual dys-
function to be associated with specific cancer treatments among
adult survivors of childhood cancer (although a high percentage
of overall sexual dysfunction was still noted). They posit that this
may reflect differences in the way that cancer therapies affect sex-
ual function in adults and children. Overall, survivors with sig-
nificant sexual dysfunction were more likely to report clinically
elevated levels of depression and anxiety, as well as low levels of
health-related quality of life, underscoring the need for clinicians
to specifically assess sexual function in long-term follow-up visits.
Cancer Recurrence
Although rates of post-traumatic stress symptoms (PTSS) or
post-traumatic stress disorder (PTSD) are low across survivors
of childhood cancer in general, it is feasible that cancer recur-
rence poses a heightened risk for such symptoms given subse-
quent traumatization associated with relapse. Supporting this
hypothesis, Phipps etal.23 found little evidence of PTSD among
children/adolescents on treatment and surviving pediatric can-
cer, except in cases where the child suffered cancer recurrence.
Among long-term adult survivors, recurrence was not associated
with greater risk for PTSD when pediatric cancer diagnoses were
examined together.24 However, among survivors reporting symp-
toms of PTSD, those who had experienced recurrence were 29%
more likely to demonstrate PTSD symptoms than those who had
not.25 Taken together, these studies suggest that recurrence may
pose particular risk for psychological distress. Given that patients
treated for sarcoma have a relatively high risk of tumor recur-
rence, clinicians should be mindful to screen for such symptoms
at follow-up and to provide intervention if warranted.
CONCLUSION
Over the past few decades, treatment for sarcomas has become
more effective and, in some cases, less toxic. Advances in surgi-
cal techniques have permitted limb-sparing procedures in many
patients, and more conformal radiotherapy approaches have
maintained high rates of local tumor control with less exposure
of normal tissues to the deleterious effects of radiation. However,
successful treatment for sarcoma continues to require aggressive
surgery and the use of relatively toxic chemotherapy and/or radio-
therapy in many cases. It stands to reason that patients treated for
sarcoma would have relatively poorer mental health outcomes due
to the challenges posed by acute and chronic late effects associ-
ated with treatment, along with the risks associated with cancer
recurrence. Yet a review of the current literature does not substan-
tiate this assumption. The psychological functioning of sarcoma
survivors is much like that of the healthy US population, and a
similarity exists across both groups regarding sociodemographic

and economic risk factors that may affect mental health outcomes.
Although there are certainly premorbid factors (history of psy-
chopathology, maladaptive coping, dysfunctional family system)
and consequences of treatment (poor physical functioning, pain,
infertility, recurrent disease) that may place patients at high risk
for psychological problems post-diagnosis, the prognosis for an
adaptive psychological response to these challenges is generally
favorable for the majority of patients surviving sarcoma.
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 CHAPTER22
Hematopoietic Dyscrasias and
Stem Cell Transplantation
Jesse R.Fann and Mitch Levy
INTRODUCTION
Hematopoietic dyscrasias present unique psypchological and
social challenges to patients and their families. This is particu-
larly true amidst the complexities of hematopoietic stem cell
transplantation (HSCT). This chapter highlights key issues for the
assessment and management of psychosocial issues and neuropsy-
chiatric syndromes for this population and focuses on assessment
and management strategies in adults. While an increasing body of
literature supports evidence-based management strategies, clini-
cal recommendations for treatment continue to incorporate both
empirical evidence and expert opinion.
EPIDEMIOLOGY AND TREATMENT
OFHEMATOPOIETIC DYSCRASIAS
Epidemiology, Clinical Course, and Treatment
Leukemia, lymphoma, and multiple myeloma (MM) account for
approximately 9% of all cancers with an estimated annual combined
incidence in the United States of about 150,000.1Myelodsyplastic
syndrome (MDS), which consists of myeloid neoplasms character-
ized by peripheral blood cytopenias with increased risk of leuke-
mic evolution, is diagnosed in slightly more than 10,000 people
annually in the United States. Blood dyscrasias can occur during
childhood or early adulthood, thus impacting patients during a
normally productive and active time in their lives. Complicated
treatment regimens with intensive multicomponent protocols
have greatly increased cure rates and have prolonged survival.
First-line treatments commonly consist of chemotherapy and/
or radiotherapy, although HSCT is sometimes used as an initial
treatment.
Hematopoietic Stem Cell Transplantation
Hematopoietic stem cell transplantation (HSCT) has been used
for an increasing range of blood and other cancer types since
it was first attempted over 50years ago; the procedure involves
transplantation of bone marrow or peripheral or umbilical cord
blood stem cells. About 60,000 patients undergo HSCT worldwide
annually. With improved supportive care, patient and donor selec-
tion, and use of reduced-intensity conditioning regimens, HSCT
has been used with increasing frequently and success (Figures 22.1
and 22.2). High-dose therapy (HDT) followed by allogeneic HSCT
involves the ablation of the recipients bone marrow by the use
of high doses of cytotoxic chemotherapy, sometimes in conjunc-
tion with total-body irradiation (TBI). This conditioning is often
accompanied by significant nausea, mucositis, and fatigue and
is then followed by replacement of the marrow with disease-free
healthy bone marrow and/or harvested stem cells. Patients undergo
a period of significant immunosuppression, which restricts their
social interaction and can result in feelings of isolation and loneli-
ness. Allogeneic transplantation using an HLA-matched donor is
preferred, and best results are obtained when patients are trans-
planted during first remission. Risk of treatment-related mortality
is primarily due to infection or graft-versus-host disease (GVHD),
a frequent complication of allogeneic transplant that can become
a chronic condition. Immunotherapy is often then required after
treatment to prevent immune rejection or attack from donor cells.
An alternative is autologous HSCT, which utilizes the patients
own stem cells harvested prior to transplantation. It is associated
with a lower treatment-related mortality rate, but a higher rate
of relapse. As lengths of hospital stays shorten, recipients of both
types of transplantation are discharged to the care of their fami-
lies or other caregivers while their medical condition is still tenu-
ous, and the risk of complications remains high. It is estimated
that the recovery of normal immune functioning may require as
long as two years.
Non-myeloablative treatment protocols with reduced-intensity
chemotherapy and radiotherapy are being employed to increase
the age and range of patients suitable for transplant. These pro-
grams expose patients to less toxic conditioning regimens while
still invoking complications such as late-onset GVHD. Regimens
incorporating immune-modulating agents (such as oral imatinib,
dasatinib, and nilotinib and parenteral bortezomib) are being
used increasingly both as first-line therapy for diseases and also as
adjuncts for HSCT conditioning regimens and subsequent therapy
in relapse prevention. While potentially increasing disease-free
survival, they also create exposures to agents with neuropsychi-
atric risks.
Long-term effects from HSCT place survivors at risk of medi-
cal complications. In addition to risk for cardiovascular and
endocrine effects and secondary cancers, a particular concern for
 Chapter22 hematopoietic dyscrasias and stem cell transplantation 145

14000
12000
10000

Transplants
8000
6000
4000
2000
0

80
82
84
86
88
90
92
94
96
98
00
02
04
06
08

20 0
*
12
1
19
19
19
19
19
19
19
19
19
19
20
20
20
20
20
20
Autologous Related Donor HCT Unrelated Donor HCT

Figure22.1 HSCT activity in the United States (19802012).

* Data incomplete
Pasquini MC, Wang Z.Current use and outcome of hematopoietic stem cell transplantation:CIBMTR Summary Slides, 2013. Reprinted with permission.

7000

6000
Number of Transplants

5000

4000

3000

2000

1000

0
Multiple NHL AML ALL MDS/ CML Aplastic CLL Other Other HD
Myeloma MPD Anemia Non- Cancer
Malig
Disease

Allogeneic (Total N = 7,892) Autologous (Total N = 12,047)

Figure22.2 Indications for HSCT in the United States, 2011.

AML=acute myeloid leukemia; ALL=acute lymphocytic leukemia; CML=chronic myelogenous leukemia; CLL=chronic lymphocytic leukemia; CML=chronic myeloid leukemia;
HD=Hodgkin disease; MDS=myelodysplastic syndrome; MPD=myeloproliferative disorder; NHL=non-Hodgkin lymphoma
Pasquini MC, Wang Z.Current use and outcome of hematopoietic stem cell transplantation:CIBMTR Summary Slides, 2013. Reprinted with permission.

HSCT survivors is chronic GVHD, often involving skin, gut, eyes,
and other organs. Chronic corticosteroid use may cause serious
complications such as diabetes, osteoporosis, avascular necrosis
of joints, and adrenal insufficiency. Body image issues, impaired
sexual function, and demoralizing levels of fatigue and weakness
may continue for a year or more after transplant. Neurologic com-
plications related to the use of high-dose chemotherapy are not
uncommon. Finally, cognitive complaints are frequent, and mild
to moderate cognitive impairment has been reported in over half
of long-term survivors.
Transplantation for Childhood Cancers
HSCT is increasingly used for a range of childhood cancers. The
stress to the child and parents or caregivers can impact the entire
family system.2 Significant anxiety may be present in as many as
40% of children pre-treatment. While anxiety may decline during
hospitalizations, some patients show significant persisting symp-
toms, which can manifest as symptoms of post-traumatic stress
disorder (PTSD). Similar to adults, rates of depression for children
rise after transplant, with rates up to double the baseline rate.3
HSCT may interfere with peer relationships and has been associ-
ated with social isolation and behavioral problems. Protective fac-
tors may include older age at time of transplant, higher parental
functioning, and greater child resilience. Risk factors for greater
functional decline post-HSCT include exposure to TBI and
younger age.
Extended periods of caregiving can lead to disruption of paren-
tal roles, high levels of hopelessness and fear, as well as concerns
for their distress affecting a childs coping and treatment. Donor
and non-donor siblings may also be at risk for anxiety, depres-
sion, symptoms of PTSD, and behavioral issues during and after
transplant.
PSYCHOSOCIAL DISTRESS AND PROBLEMS
Epidemiology
Distress is common before, during, and after treatment for blood
dyscrasias and occurs along a continuum of severity that is ele-
vated compared to the general population. Adjustment, mood,
and anxiety disorders are particularly common.4 Individuals
146 Section IV psychological issues related to site of cancer
undergoing HSCT encounter major disruptions to social, fam-
ily, and work life. They can be separated from supports during
transplant or chemotherapy induction and hospitalization.
Challenges prior to allogeneic transplant may emerge as a result
of stem cell donor selection, family stressors, and financial,
housing, and other practical concerns. Patients are more vul-
nerable to distress during periods when prognosis or treatment
course change (e.g., graft failure), severe adverse effects develop
(e.g., GVHD), rehospitalization occurs, or changes occur to
clinician follow-up (e.g., discharge from transplant center).
Periods of immunological compromise radically circumscribe
social contact, even after discharge. Illness-associated stigma
and job loss can occur. Patients who have psychiatric issues
such as anxiety or depression are at risk for poorer health out-
comes, longer hospital lengths of stay, and higher mortality. 5
Additional risk factors for distress and adverse outcome are
outlined in Box 22.1.
Depression
Reported rates of depression for hematopoietic dyscrasias range
from 5% to 30%. While rates of moderate to severe depression
prior to HSCT are in the lower range, possibly because of a high
level of habituation to their diagnosis and hope by the time they
arrive for their transplant, rates increase significantly during
the one- to two-month post-transplant period to over 25%.6
This is a time when many adverse cancer and treatment-related
symptoms, such as due to corticosteroids for GVHD, are most
prominent. Depression in cancer treatment is associated with
adverse outcomes, including reduced quality of life, amplifica-
tion of symptoms such as pain, and decreased adherence with
medical care.
Box 22.1 Patient Risk Factors for Psychological Morbidity
andDistress During HSCT
Psychosocial Risk Factors
Prior psychiatric morbidity, including substance-related
disorders
Pre-transplant treatment non-adherence
Younger age
Female gender
Avoidance-based coping (escape, distancing, denial)
Problems with presence, quality, and perception of social
support
Challenging relationships
Negative appraisal of the transplant experience
Disturbed body image
Intense fears of relapse or secondary malignancies
Negative life events
Medical Risk Factors
Recent smoking cessation
Lower functional status
Persistent physical symptoms, such as significant pain,
fatigue
Prolonged physical recovery
Chronic GVHD
Impaired sexual function
Anxiety and Post-traumatic Stress Disorder
Rates of anxiety range from 10% to 30% in patients with hema-
topoietic dyscrasias. These levels often decline over time as adap-
tation occurs through the course of treatment. High levels of
anxiety are often present at the time of diagnosis and can worsen
at critical transitions in prognosis or treatment. As with depres-
sion, high levels of anxiety are associated with decreased quality
of life during the course of cancer treatment and may affect treat-
ment outcomes, such as duration of hospitalization. In addition to
persisting anxiety or panic, symptoms of intrusive cancer-related
worries, severe avoidance behaviors, or outright cancer-associated
flashbacks or nightmares may suggest a diagnosis of PTSD.
Rates of PTSD after HSCT range from 5% to 19%. In non-HSCT
patients, rates of 14% for acute stress disorder have been reported.7
The symptoms of PTSD may overlap with those of normal grief
and illness-related preoccupation.
Insomnia
Moderate to severe insomnia occurs at rates as high as 50%
throughout the first 100days of HSCT and often co-occurs with
fatigue and bowel changes.8 Insomnia is often caused or exacer-
bated by anxiety, depression, pain, delirium, or medications such
as corticosteroids and diuretics. Akathisia caused by anti-emetics
such as prochlorperazine or metoclopramide should also be con-
sidered. Once these more readily treatable causes are ruled out,
primary sleep disorders such as obstructive sleep apnea and rest-
less legs syndrome should be entertained. Insomnia can signifi-
cantly impair daytime functioning and exacerbate other common
problems during cancer treatment, such as fatigue, impaired cog-
nition, depression, and accident proneness. Although initially
sedating, opioids can suppress rapid eye movement and slow wave
sleep and have been associated with central obstructive sleep
apnea.
Fatigue
Rates and severity of fatigue during HSCT vary depending on
the phase of transplant. Problematic fatigue may continue in as
many as 70% of survivors after as long as five years. Modifiable
contributors may include insomnia, pain, depression, and anxi-
ety. Anemia, infection, metabolic derangements, and nutritional
deficits should also be addressed.
Delirium
Up to 50% of myeloablative HSCT patients develop delirium epi-
sodes averaging 10days in duration within the month following
the transplant, with highest incidence in the first two weeks.9
Overall rates of delirium during HSCT may be decreasing with
improved management of pain and GVHD and increased use
of reduced-intensity regimens. Hypoactive delirium is the most
common presentation during HSCT. Adverse delirium outcomes
include increased morbidity and mortality, prolonged length of
hospital stay, and elevated rates of distress for patients and care-
givers. The negative effects of delirium on cognition and quality of
life may continue well after delirium episodes abate.10
Common vulnerability factors for delirium include severe
medical illness, advanced age, prior cognitive deficits (particu-
larly executive dysfunction), and hepatic or renal dysfunction.
Precipitating factors for delirium may include systemic and
 Chapter22 hematopoietic dyscrasias and stem cell transplantation 147

central nervous system infection, metabolic abnormalities (often Neuropsychiatric Complications

caused by dehydration or malnutrition), hypoxia, anemia, pain,
and medication toxicities. Opioids in particular, as well as anti-
cholinergic medications and sedatives, are frequent contributors
to delirium onset and duration. Immunocompromise associated
with chemotherapy places patients at risk for delirium related
to reactivation of latent viral syndromes.11 Delirium in patients
undergoing HSCT may occur related to reinfection with human
herpesvirus 6, varicella zoster virus, or cytomegalovirus.
High dosages and frequent cycles of chemotherapy agents used in
HSCT are associated with a range of significant neuropsychiatric
effects, including cognitive dysfunction (Table 22.1). This burden
of exposure continues with agents used to maintain engraftment
and prevent complications of GVHD. Reversible posterior leu-
koencephalopathy syndrome (RPLS), which is a severe compli-
cation often resulting from immunomodulatory agents such as

Table22.1 Neuropsychiatric Effects Associated With Agents Used During Treatment for Hematologic Malignancies, including HSCT

Agent Neuropsychiatric Effect

Amifostine Loss of consciousness, seizures
Bendamustine Headache
Bevacizumab RPLS
Bortezomib Headache, PML, RPLS, psychosis, suicidal ideation
Brentuximab Seizures, sensory/motor neuropathy, anxiety, PML
Busulfan Seizures
Carboplatin Ataxia, cerebral edema, headache
Carmustine (BCNU)/ Seizures, myeloencephalopathy, RPLS Cognitive deficits (longer-term)
lomustine (CCNU)
Cisplatin Peripheral and cranial/autonomic neuropathy, ototoxicity, leukoencephalopathy, seizures, stroke-like
episodes; SIADH, RPLS
Corticosteroids Mood lability, insomnia, mania, depression, psychosis, delirium, cognitive deficits, PML, dementia-like
changes (long-term), akathisia
Cyclosporine Headache, seizures, focal deficits, cortical blindness, RPLS
Cyclophosphamide Guillain-Barr syndrome, somnolence, ataxia, peripheral or cranial neuropathy, SIADH, PML
Cytarabine (liposomal) Arachnoiditis, aseptic meningitis, headache, confusion, seizure, ataxia, leukoencephalopathy, agitation,
depression, anxiety, delirium, personality change, drowsiness, dementia, psychomotor retardation
Fluoropyrimidine RPLS, fatigue
Etoposide Confusion, cortical blindness, seizures, optic neuritis, peripheral neuropathy, RPLS
Filgrastim Headache, RPLS
Fludarabine Headache, somnolence, confusion, paresthesia, PML severe neurotoxicity (including blindness, coma,
death, seizuresat higher dosages)*
5-Fluorouracil Fatigue, seizure, confusion, cerebellar syndrome
Gemcitabine RPLS, sensory/motor neuropathy, paresthesias, fatigue
Ifosfamide Delirium, seizures, focal neurological deficits, lethargy, cerebellar signs, hallucinations
Imatinib Asthenia, dizziness, headache, insomnia
Interleukin-2 Fatigue, depression, behavioral changes, delirium, mania, cognitive deficits, seizures, focal neurologic
changes, RPLS, psychosis
Interferon-alpha Delirium, somnolence, depression, suicidality, aphasia, agraphia, psychosis, RPLS, cognitive deficits, mania,
psychosis, akathisia
L-Asparaginase Somnolence, lethargy, delirium, depression
Lenalidomide Headache, fatigue, depression, hallucinations, mood swings
Mesna Confusion, headache, anxiety (when used with ifosfamide), somnolence
Methotrexate (especially intrathecal) Arachnoiditis, aseptic meningitis, seizures, paraparesis, leukoencephalopathy, delirium, RPLS, PML
(continued)
148 Section IV psychological issues related to site of cancer

Table22.1(Continued)

Agent Neuropsychiatric Effect

Oxaliplatin Peripheral neuropathy, RPLS
Paclitaxel Ataxia, autonomic neuropathy, fatigue, encephalopathy, seizure
Palifermin Headache
Pazopanib RPLS
Plerixafor Headache, dizziness, insomnia
Procarbazine Somnolence, depression, delirium, psychosis, cerebellar disorder
Rituximab RPLS, PML, fatigue, sensory neuropathy
Sirolimus RPLS, PML, headache
Sorafenib RPLS
Sunitinib RPLS
Tacrolimus RPLS, seizures, delirium, psychosis
Taxanes Neuropathy, fatigue, depression
Thalidomide Headache, RPLS, seizure, agitation, anxiety, dementia, depression, fatigue, mood swings, psychosis, suicidal
behavior
Thiotepa Leukoencephalopathy, headache
Vinblastine Depression, fatigue, encephalopathy
Vincristine Depression, fatigue, encephalopathy, SIADH, peripheral neuropathy, RPLS
Vinorelbine Depression, fatigue, encephalopathy
Voriconazole Headache, toxic encephalopathy, auditory and/or visual hallucinations, psychosis, suicidal ideations
Vorinostat Headache
PML=progressive multifocal leukoencephalopathy; RPLS=reversible posterior leukoencephalopathy syndrome; SIADH=syndrome of inappropriate antidiuretic
hormone.

cyclosporine, tacrolimus, interferon-alpha, and granulocyte/mac-
rophage colony-stimulating factor, is typically characterized by a
constellation of neurologic symptoms, including seizures, head-
ache, visual changes, and altered consciousness. MRI findings
commonly include reversible cortical/subcortical hyperintensi-
ties in parieto-occipital regions. Additional risk factors for RPLS
include concurrent chemotherapy and metabolic abnormalities,
such as hypercalcemia or hypomagnesemia, hypertension, acute
renal failure, vasculitis, and prior traumatic brain injury.
Limbic or paraneoplastic encephalitis is a rare neurologi-
cal disorder characterized by amnesia, seizures, and psychiatric
disturbances such as hallucinations and behavioral symptoms,
associated with anti-neuronal antibodies targeting either intracel-
lular or neuronal cell surface antigens, for example, voltage-gated
potassium channel (VGKC) and other receptors types. It is typi-
cally associated with an underlying neoplasm, most commonly
of lung, ovary, or other solid tumors, although it has also been
reported for hematologic malignancy.
Sexuality and Fertility
Patients are subjected to regimens that can affect body image, sex-
ual function, and reproductive and hormonal status. The high-dose
conditioning regimens of HSCT cause gonadal dysfunction in most
patients, complicated by hormonal dysfunction, such as to the thy-
roid and reproductive axes. As many as 69% of men undergoing
HSCT have azospermia, even in the presence of normal testosterone
levels. Risk factors include TBI, age over 25years at transplantation,
and ongoing chronic GVHD.12 Even levels of testosterone within
the lower normal range may be associated with poor libido or erec-
tile problems. Loss of ovarian function occurs for most women after
myeloablative regimens, and sexual dysfunction is common.
Families and Caregivers
Caregivers are required to provide intensive support throughout
transplant and aftercare. Patients and their supports may have to
relocate to treatment centers, and employment, family, and other
commitments are often put on hold. Caregivers must manage the
uncertainty of treatment while providing substantial emotional
and logistical support.
As a key member of the care team, their burden has increased
as components of HSCT have moved to outpatient settings.
Caregivers are tasked with a wide range of responsibilities, such as
providing transportation, monitoring or administering medica-
tions and other medical therapies, and promoting patient self-care
behaviors such as diet, exercise, and infection control. These
duties often lead to patient-caregiver conflicts and heightened dis-
tress. Studies suggest that rates of distress for caregivers may be
equal to or may exceed that of patients shortly post-transplant.13
Educational interventions and increasing system predictability
are advocated. Problem-solving therapy has shown benefit for
reducing distress in caregivers and caregiving dyads during the
more acute phases of treatment.
 Chapter22 hematopoietic dyscrasias and stem cell transplantation
Diagnosis and Medical Workup
Screening for psychosocial distress improves communication and
patient-provider satisfaction related to psychosocial care.14 While
distress screening at multiple critical junctures in treatment is opti-
mal, an evidence-based approach to determining when to screen for
distress is recommended to maximize resource efficiency. For exam-
ple, patients with high distress pre-transplant should be monitored
with follow-up assessments, and all patients should be rescreened
at one to two months post-transplant, if possible.15 While detecting
distress may be relatively straightforward with a system of screen-
ing, determining the causes of distress from the array of possible
medical, psychological, and social sources is more challenging. As
in many medical settings, the diagnosis of clinically significant
psychiatric conditions poses a challenge, given the constellation of
concurrent somatic symptoms resulting from the disease and treat-
ments. For example, hematologic abnormalities can cause signifi-
cant fatigue, pain, dyspnea, and even cognitive dysfunction.
Examination of laboratory hematologic indicators is important
in understanding the context of the patients symptoms. Review
of concomitant medications is also important, since many medi-
cations used in the treatment or management of blood dyscrasias
and in HSCT may place patients at risk for psychiatric symptoms
(see Table 22.1). For example, corticosteroids used with chemo-
therapy or for management of GVHD, although classically associ-
ated with anxiety, psychosis, or manic behavior at higher dosages,
can cause depression during treatment or taper and may induce
suicidal thoughts. Interferon-alpha has been notoriously associ-
ated with high rates of depression, possibly related to effects on
either hypothalamic-pituitary axis or serotonin neurotransmitter
Table22.2 Benefits and Risks of Commonly Used Psychopharmacologic Agents in Patients With Hematologic Dyscrasias
Medication Class Benefits
Sedative-hypnotics for insomnia
Eszopiclone Help with anxiety, anti-emetic
Ramelteon (diphenhydramine)
Temazepam
Trazodone
Zaleplon
Diphenhydramine
Anxiolytics
Clonazepam Amnestic benefits during
Lorazepam procedures, antiemetic
Gabapentin
Pregabalin
Antidepressants
Bupropion Smoking cessation, may improve
focus and reduce fatigue
Citalopram May improve anxiety and panic
149
systems. Anticholinergics or benzodiazepines used for nausea
may worsen depression or delirium, and anti-emetics such as pro-
chlorperazine may cause extrapyramidal symptoms or agitation.
Some medications used for cancer treatment or manage-
ment have potentially significant interactions with psychotropic
medications. For example, the anti-neoplastic procarbazine and
the antibiotic linezolid are weak monoamine oxidase inhibitors
(MAOIs); therefore, concomitant use with MAOI antidepressants
is contraindicated, and use with serotonergic agents or indirectly
or directly acting sympathomimetic agents is not recommended
unless patients can be monitored very closely for increased blood
pressure and serotonin syndrome.
Treatment of Psychological Distress and Problems
Effectively treating behavioral and neuropsychiatric conditions
can improve quality of life and possibly overall health and immune
function in patients with hematologic malignancies. Psychiatric
problems in patients with adjustment disorders may respond rap-
idly to improvements of their pain, sleep, or medical situation.
Notably, demoralized patients may brighten and activate normally
in response to visitors, family, and enjoyable activities. First, treat-
ment of contributory medical conditions that can increase risk or
worsen neuropsychiatric symptoms (e.g., insomnia, sleep apnea,
pain, anemia, hypoxia) should be optimized. Due to the high rate
of medical and psychiatric comorbidity, minimizing polyphar-
macy by using medications that address multiple conditions is
recommended. For example, benzodiazepines may simultane-
ously benefit insomnia, nausea, and anxiety; psychostimulants
may benefit fatigue, depression, and cognition (Table22.2).
Cautions Interactions
Delirium, sedation, Additive sedation with opioid pain
fatigue, orthostasis medications, anti-emetics, and anxiolytics
Delirium, sedation, orthostasis, Additive sedation with opioid pain
tolerance/abuse, respiratory medications, anti-emetics, and
depression sedative-hypnotics
Anxiety, tremor, insomnia, seizure May be additive with steroids for insomnia
(rare) and activation
Nausea, headache, diarrhea, sedation, Increased risk for QTc prolongation and
or anxiety. Risk of QTc prolongation Torsades with pro-arrythmic agents;
with dosages above 40mg/day potential interactions also include with those
agents that inhibit monoamine oxidase, such
as procarbazine
(continued)
150 Section IV psychological issues related to site of cancer

Table22.2(Continued)

Medication Class Benefits Cautions Interactions

Escitalopram May improve anxiety and panic Nausea or GI upset, headache, Potential interactions also include with those
diarrhea, sedation or anxiety agents that inhibit monoamine oxidase, such
as procarbazine
Fluoxetine May improve anxiety and panic Nausea or GI upset, headache, Risk for Cytochrome P450 2D6, 3A4
diarrhea, sedation or anxiety interactions with other prescribed
medications,
potential interactions also include with those
agents that inhibit monoamine oxidase, such
as procarbazine
Venlafaxine May improve anxiety and panic, Nausea or GI upset, headache, Potential interactions also include with those
Duloxetine benefits for neuropathic pain diarrhea, sedation or anxiety, agents that inhibit monoamine oxidase, such
hypertension at high doses as procarbazine
Mirtazapine May improve anxiety and panic, Sedation, orthostasis, dry mouth, Additive sedation with opioid pain
benefits for sleep, appetite and agranulocytosis (rare) medications, anti-emetics, and
nausea sedative-hypnotics
Paroxetine May improve anxiety and panic Nausea or GI upset, headache, Risk for Cytochrome P450 2D6, 3A4
diarrhea, sedation or anxiety, interactions with other prescribed
withdrawal syndrome with abrupt medications, potential interactions also
discontinuation include with those agents that inhibit
monoamine oxidase, such as procarbazine
Sertraline May improve anxiety and panic Nausea or GI upset, headache, Potential for interactions with agents
diarrhea, sedation or anxiety that inhibit monoamine oxidase, such as
procarbazine
Stimulants for fatigue
Dexmethylphenidate Decrease fatigue and depression, Anxiety, insomnia, tachycardia, Increased activation with steroids and
Dextroamphetamine increase concentration arrhythmia (rare) insomnia
Methylphenidate
Modafinil Decrease fatigue and depression, Anxiety, headache, GI upset, diarrhea, Increased activation with steroids and
Armodafinil increase concentration and Stevens-Johnson syndrome (rare) insomnia

Antipsychotics
Aripiprazole Reduce delirium severity and Common:sedation; orthostasis; dry Increased risk for QTc prolongation and
Haloperidol duration, decrease associated mouth; QTc prolongation; weight gain, Torsades with proarythmic agents; increased
symptoms of psychosis, and elevated fasting glucose, cholesterol; risks of EPS and TD with prochlorperazine
Olanzapine
improve sleep. Olanzapine and akathisia; extrapyramidal symptoms
Quetiapine quetiapine can decrease nausea (Parkinsonism; rigidity)
Risperidone and anxiety and increase appetite Rare:neuroleptic malignant syndrome;
Ziprasidone torsades des pointes; tardive
dyskinesia (TD)

Many agents used for treating conditions such as depression,
anxiety, and delirium may have risks for inducing hematopoietic
dysfunction (see Table 22.3). Drug-induced neutropenia usually
becomes apparent after one or two weeks of exposure, and the
severity of neutropenia that develops depends upon the dose and
the duration of medication exposure. Agranulocytosis may occur
three to four weeks after the initiation of therapy. Antidepressants
with highly potent serotonin reuptake inhibition (e.g., fluoxetine,
paroxetine, and sertraline) have been associated with abnormal
bleeding and altered platelet function.16
Despite high rates of distress with HSCT, 50% or fewer indi-
viduals with distress seek mental health care.17 Barriers to care
include factors such as transportation, income, and educational
level, as well as physical or functional limitations. Modalities that
can increase the reach of evidence-based education, screening,
and interventions should be explored, such as telephone, Internet,
or videoconference-based approaches.
Depression
When major depression or significant functional impairment
related to depressed mood is present, treatment with antidepres-
sants and/or psychotherapy should be considered.
The selective-serotonin reuptake inhibitors (SSRIs) are gener-
ally considered first-line therapies for depression during HSCT.
Several SSRIs have a relatively benign side-effect profile as well
as safety in potential combination with medical therapies used
Table22.3 Hematologic Toxicities on Different Bone Marrow Cell Lines of Common Psychopharmacologic Agents

Medication White Blood Cell Red Blood Cell Platelet Other

Antipsychotics
Chlorpromazine Agranulocytosis, neutropenia Anemia (aplastic, Thrombocytopenia Eosinophilia
hemolytic)
Fluphenazine Agranulocytosis, leukocytosis, Thrombocytopenia Eosinophilia, pancytopenia
neutropenia
Haloperidol Agranulocytosis,
leukocytosis, neutropenia,
lymphomonocytosis
Prochlorperazine Agranulocytosis, neutropenia Thrombocytopenia
Thioridazine Agranulocytosis, neutropenia Thrombocytopenia
Clozapine Agranulocytosis, Anemia Thrombocytopenia, thrombocytosis Eosinophilia
neutropenia, lymphopenia
Olanzapine Agranulocytosis, neutropenia, Thrombocytopenia
leukocytosis
Quetiapine Agranulocytosis, neutropenia Thrombotic
thrombocytopenic purpura
Risperidone Agranulocytosis, leukocytosis, Anemia Thrombocytopenia
neutropenia
Ziprasidone Agranulocytosis, neutropenia
Antidepressants
Amitriptyline, nortriptyline Agranulocytosis, neutropenia Thrombocytopenia Eosinophilia
Imipramine, desipramine Agranulocytosis, neutropenia Thrombocytopenia Eosinophilia
Clomipramine Agranulocytosis, neutropenia Thrombocytopenia Pancytopenia
Tranylcypromine Agranulocytosis, neutropenia Anemia Thrombocytopenia
Citalopram Leukocytosis, neutropenia Anemia Impaired platelet aggregation
Fluoxetine Disseminated intravascular
coagulation, impaired platelet
aggregation
Fluvoxamine Impaired platelet aggregation
Paroxetine Impaired platelet aggregation
Sertraline Anemia Thrombocyctopenia, impaired
platelet aggregation
Mirtazapine Agranulocytosis, neutropenia Anemia Thrombocytopenia Pancytopenia
Trazodone Leukocytosis, neutropenia Anemia
Venlafaxine Leukocytosis, neutropenia Anemia
Benzodiazepines
Chlordiazepoxide Agranulocytosis Anemia Impaired platelet aggregation,
thrombocytopenia
Clonazepam Neutropenia Anemia Thrombocytopenia Eosinophilia
Diazepam Agranulocytosis, Anemia Impaired platelet aggregation, Pancytopenia
thrombocytopenia
Lorazepam Neutropenia
(continued)
152 Section IV psychological issues related to site of cancer
Table22.3(Continued)
Medication White Blood Cell
Anticonvulsants/Mood stabilizers
Carbamazepine Agranulocytosis leukopenia,
leukocytosis
Gabapentin Leukopenia
Pregabalin
Lamotrigine
Lithium Leucocytosis, leukemia,
Valproate Neutropenia
Adapted with permission from Flanagan RJ, Dunk L.Haematological toxicity of drugs used in psychiatry. Hum Psychopharmacol. 2008 Jan;23 Suppl 1:2741.
during HSCT. Low starting dosages should be used in more medi-
cally compromised patients. Within this medication class, agents
with the lowest risk for drugdrug interactions should be used, for
example, citalopram, escitalopram, or sertraline. Citalopram espe-
cially can cause a dose-dependent increase in the corrected cardiac
QT interval (QTc). This has been associated in rare cases with the
ventricular arrhythmia Torsade des Pointes. Risk is heightened
when used with other medications with pro-arrhythmia risk, such
as ondansetron, antifungals (posaconazole, itraconazole, voricon-
azole, fluconazole), tacrolimus, methadone, prochlorperazine,
and promethazine. Serotonin-norepinephrine reuptake inhibitors
(SNRIs), such as venlafaxine and duloxetine, have an advantage
of potentially improving neuropathic pain, such as due to chemo-
therapy. Bupropion can be helpful as a second-line or augmenting
agent for SSRIs and SNRIs, particularly for patients with signifi-
cant fatigue or struggling with smoking cessation. Concomitant
use of serotonergic agents with metoclopramide may increase
risk for extrapyramidal reactions and neuroleptic malignant syn-
drome, and use with opioids such as fentanyl can increase risk of
serotonin syndrome. Psychostimulants can be an effective initial
treatment when significant psychomotor retardation and fatigue
are present and more rapid activationfor example, to promote
treatment engagement, exercise, and nutritionis needed while
awaiting the benefits of antidepressants.
Several modalities of psychotherapy, including group inter-
vention, individual behavioral activation, or cognitively based,
problem-solving, and interpersonal therapies, have all dem-
onstrated efficacy for reducing depressive symptoms in cancer
patients. These appear to be reasonable treatment approaches in
the setting of HSCT, although more data are needed, and behav-
iorally versus cognitively focused approaches may be more toler-
ated by patients struggling with cognition. Relaxation therapies
have shown promise in reducing depression and anxiety in this
population.18 In the setting of advanced illness or palliative set-
tings, existential or psychodynamically oriented therapies may be
helpful. More severe or treatment-resistant depression often calls
for combined medication and psychotherapy. Whenever possible,
family or other care providers should also be mobilized to help
with patient coping and activation.
The presence of depression in oncology settings can lead to a
hastened desire for death and increased risk for suicide, partic-
ularly within the first several months of diagnosis and during
Red Blood Cell Platelet Other
Anemia, aplasia Thrombocytopenia Eosinophilia
Thrombocytopenia
Anemia, aplasia Thrombocytopenia Pancytopenia
Thrombocytosis
Anemia, aplasia Thrombocytopenia
periods of illness recurrence or treatment failure. Coordination
and liaison with oncology providers may be needed to secure
patient safety. Inpatient psychiatric hospitalization may be war-
ranted, although more medically ill patients may require hos-
pitalization on hematology/oncology units augmented by close
psychiatric consultation.
Anxiety and Post-traumatic Stress Disorder
Due to their risk for precipitating delirium during HSCT, treat-
ment of anxiety acutely using benzodiazepines should be brief and
targeted. It is reasonable to use shorter-acting as-needed benzodi-
azepines, such as lorazepam, for intermittent situational anxiety,
such as phobia of medical procedures or food aversions. Scheduled
longer-acting benzodiazepines, such as clonazepam, are often
preferred for treatment of sustained and generalized anxiety.
Pharmacotherapy for anxiety disorder frequently includes an
SSRI or SNRI. The anticonvulsants gabapentin and pregabalin,
often used for neuropathic pain, also has anxiolytic properties.
Cognitive behavioral therapy administered by telephone has been
shown to be efficacious for reducing illness-related PTSD symp-
toms and general distress in HSCT survivors.19
Insomnia
Treatment should start with addressing underlying etiologies,
such as depression, anxiety, delirium, or pain. Sleep apnea and
restless legs syndrome should be ruled out. Decreasing possible
contributory medications such as corticosteroids or diuretics can
help improve sleep quality. Symptomatic interventions should be
tailored to the clinical nature of the insomnia (i.e., sleep onset,
middle or early morning awakening). Ideally, rapid-onset,
short-acting sedative hypnotics such as zolpidem and temaze-
pam are useful for sleep onset insomnia. Longer-acting agents,
such as clonazepam (particularly with comorbid anxiety), tra-
zodone, and eszopiclone are useful for middle and early morn-
ing awakening, although with a higher risk of daytime sedation.
Patients with comorbid insomnia and psychiatric conditions
may benefit from psychotropic medications with sedative prop-
erties (see Table 22.2), and medications used for neuropathic
pain (e.g., gabapentin) may also help. Commonly used sedat-
ing medications such as mirtazapine and quetiapine have rare
serious hematologic side effects and should be used with cau-
tion in vulnerable patients. Clinicians should strive to avoid
 Chapter22 hematopoietic dyscrasias and stem cell transplantation
daytime sedation, such as from antihistamines, which may
exacerbate fatigue and depression and increase risk for delir-
ium. Valerian has been associated with cases of hepatotoxicity,
and L-tryptophan has interactions with SSRIs. Kava should be
avoided in cancer patients due to potential for liver failure, leuko-
penia, and thrombocytopenia. Whenever possible, management
should also include sleep hygiene and non-pharmacological
approaches such as progressive muscle relaxation, hypnosis, or
cognitive behavioral strategies.
Delirium
Treatment involves addressing underlying medical conditions
and ensuring safety, as well as the reduction or elimination of con-
tributing agents such as opioids, anticholinergics, steroids, and
sedative hypnotics. Environmental and behavioral interventions
aimed toward decreasing disorientation may also benefit.
Both clinical and empirical evidence in cancer populations
suggests the benefit of low-dosage neuroleptic medication for
increasing sleep continuity and reducing agitation and psychotic
symptoms. Neuroleptics also may help decrease the duration and
severity of delirium symptoms. Haloperidol is often used because
of its relatively low anticholinergic burden and availability for
intravenous administration. Newer antipsychotic medications
with less risk for extrapyramidal side effects include risperidone,
quetiapine, ziprasidone, olanzapine, and aripiprazole. Several
of these can be used in oral or sublingual formulation at night
to promote sleep. In more severe cases of delirium, higher doses
(including administration during daytime hours) may be needed
to decrease psychomotor agitation. Some potential side effects of
antipsychotics are of particular concern in the acute transplant
setting, including orthostasis, sedation, extrapyramidal effects,
QTc prolongation, and hematologic effects.
Fatigue
Evidence-based guidelines emphasize the value of behavioral
approaches, including pacing, strategic rest, and social support.
Interventions showing benefit for fatigue include structured
hospital or home programs involving graduated aerobic and
resistance-based exercise. Many patients find the recommenda-
tion of exercise to improve fatigue counterintuitive and will ben-
efit from education on the safety and benefits of increased activity
during and after treatment, as medically advisable. Patients who
fail to respond to medical and behavioral changes or with severe
fatigue levels may benefit from pharmacotherapy with psycho-
stimulants, particularly if there is comorbid depression, or wake-
fulness promoting agents, such as modafinil. Dosage ranges are
usually lower than those used for attention-deficit disorder or pri-
mary psychiatric conditions.
Neuropsychiatric Complications
When RPLS is suspected, consultation with neurologic and
infection-disease experts is warranted, and treatment typically
involves discontinuation of offending agents, when possible, and
treating hypertension, seizures, and other comorbid conditions.
Management strategies for paraneoplastic syndrome are primar-
ily supportive and involve neurological workup for detecting the
involved antigen and neurologically targeted immunotherapies
such as corticosteroids, intravenous Ig, or plasmapharesis.
153
Sexuality and Fertility
Prior to beginning treatment, family planning and fertility issues
should be discussed with all patients of reproductive age. For men,
cryopreservation of sperm should be offered. In women, recom-
mendations for fertility preservation should be individualized
based on factors including the urgency of treatment, patient age,
marital status and family planning, as well as the regimen and
dosage of cancer treatment.20
Hormone replacement therapy can be considered for premature
menopause in the absence of cardiovascular contraindications or
increased breast cancer risk factors. Potentially helpful interven-
tions for maintaining and improving sexual function and rela-
tionship satisfaction include education, hormone evaluation and
therapy, behavioral strategies, and couples interventions.21
SURVIVORSHIP ISSUES
Transplant successes have led to a growing population of survi-
vors transitioning to care in the community. Among individuals
undergoing HSCT who do not have recurrence of their disease
within the first five years, 80% will survive 20years, and there is
a 30% lower life expectancy compared with the general popula-
tion.22 While chronic physical symptoms such as fatigue and mus-
culoskeletal problems are common, physical functioning typically
improves before psychological and role functioning which often
takes three to five years or more.23 Over 20% of longer-term survi-
vors note adverse psychological outcomes.24 Risk factors for poor
recovery include low socioeconomic status, poor social support,
depression, ongoing poor health, allogeneic transplant, chronic
GVHD, and steroid exposure.
After HSCT, the level of treatment team and caregiver support
that patients become dependent upon can terminate abruptly.
Having been focused on treatment and survival, patients attempt
to transition to previously held family, social, and work roles.
Recently successful coping strategies dealing with acute illness,
such as adhering to strictly regimented daily routines, are often
less adaptive. Nonetheless, most survivors will ultimately return
successfully to work, social, and home activities. Their caregivers
and family may also struggle with role adjustment, possibly war-
ranting relationship or individual counseling. Modest numbers
of survivors report benefit finding or post-traumatic growth after
treatment, particularly with ongoing emotional and instrumen-
tal support. Persistent difficulties with sexual function can create
stress and warrant couples or fertility counseling.
Complaints of memory, attention, and concentration difficulty
are common in survivors beyond a year post-treatment, although
subjective reports may not always correspond to objective test-
ing. Subtle neurocognitive deficits may only become manifest as
patients transition into other roles, such as work. While cognitive
functioning can continue to improve, 40% of survivors still expe-
rience cognitive deficits at five years post-transplant.25 Improved
functioning may result from speech, occupational, or vocational
therapy or cognitive rehabilitation. Psychostimulants have shown
promise for improving cognitive function and also in reducing
fatigue, which may worsen cognitive capacity.
Patients and caregivers may benefit from peer support groups
and social services, which can provide a sense of community and
aid with adjustment after transplant. Evidence-informed recom-
mendations provided in care plans for survivor aftercare may
154 Section IV psychological issues related to site of cancer
include guidelines for annual examination, education, vaccina-
tions, and screening for medical and psychiatric complications
and late effects.26
CONCLUSIONS
Hematopoietic dyscrasias are associated with significant psycho-
social distress in many patients, particularly those undergoing
stem cell transplantation. Families and caregivers are also at risk
for significant distress. Future research should focus on iden-
tifying predictors, including genetic and other biomarkers, in
the etiology and personalized management of neuropsychiatric
conditions in this population. Development of patient-centered
interventions and comparative effectiveness research is needed
to identify the most acceptable, effective, and cost-efficient
approaches to preventing, detecting, and managing the myriad
psychosocial and neuropsychiatric sequelae of hematopoietic dys-
crasias and their treatments. As medical treatment continues to
move into outpatient settings, the development of cost-effective,
collaborative approaches to providing psychosocial services that
integrate seamlessly with oncology and primary care becomes a
particularly high priority.
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6. Fann JR, Berry DL, Wolpin S, Austin-Seymour M, Bush N, Halpenny
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8. Bevans MF, Mitchell SA, Marden S. The symptom experience in the
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Delirium in patients undergoing hematopoietic stem cell transplan-
tation. Cancer. 2002 Nov 1;95(9):19711981.
10. Fann JR, Alfano CM, Roth-Roemer S, Katon WJ, Syrjala KL. Impact
of delirium on cognition, distress, and health-related quality of life
after hematopoietic stem-cell transplantation. J Clin Oncol. 2007 Apr
1;25(10):12231231.
11. Zerr DM, Fann JR, Breiger D, Boeckh M, Adler AL, Xie H, Delaney
C, Huang ML, Corey L, Leisenring WM. HHV-6 reactivation and its
effect on delirium and cognitive functioning in hematopoietic cell
transplantation recipients. Blood. 2011 May 12;117(19):52435249.
12. Rov A, Aljurf M, Chiodi S, Spinelli S, Salooja N, Sucak G, Hunter
A, Kim TS, Soci G, van Lint MT, Passweg JR, Arat M, Badoglio
M, Tichelli A; Late Effects Working Party of the EBMT. Ongoing
graft-versus-host disease is a risk factor for azoospermia after allo-
geneic hematopoietic stem cell transplantation:a survey of the Late
Effects Working Party of the European Group for Blood and Marrow
Transplantation. Haematologica. 2013 Mar;98(3):339345.
13. Beattie S, Lebel S. The experience of caregivers of hematologi-
cal cancer patients undergoing a hematopoietic stem cell trans-
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Nov;20(11):11371150.
14. Hoodin F, Zhao L, Carey J, Levine JE, Kitko C. Impact of psy-
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Oct;19(10):14931497.
15. Artherholt SB, Hong F, Berry DL, Fann JR. Risk factors for depres-
sion in patients undergoing hematopoietic cell transplantation.
Biology of Blood and Marrow Transplantation. 2014;20:946950.
16. Flanagan RJ, Dunk L. Haematological toxicity of drugs used in psy-
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17. Mosher CE, DuHamel KN, Rini CM, Li Y, Isola L, Labay L, Rowley
S, Papadopoulos E, Moskowitz C, Scigliano E, Grosskreutz C, Redd
WH. Barriers to mental health service use among hematopoietic SCT
survivors. Bone Marrow Transpl. 2010 Mar;45(3):570579.
18. Kim SD, Kim HS. Effects of a relaxation breathing exercise on anxi-
ety, depression, and leukocyte in hemopoietic stem cell transplanta-
tion patients. Cancer Nurs. 2005 JanFeb;28(1):7983.
19. DuHamel KN, Mosher CE, Winkel G, Labay LE, Rini C, Meschian
YM, Austin J, Greene PB, Lawsin CR, Rusiewicz A, Grosskreutz CL,
Isola L, Moskowitz CH, Papadopoulos EB, Rowley S, Scigliano E,
Burkhalter JE, Hurley KE, Bollinger AR, Redd WH. Randomized
clinical trial of telephone-administered cognitive-behavioral therapy
to reduce post-traumatic stress disorder and distress symptoms after
hematopoietic stem-cell transplantation. J Clin Oncol. 2010 Aug
10;28(23):37543761.
20. ISFP Practice Committee, Kim SS, Donnez J, Barri P, Pellicer A,
Patrizio P, Rosenwaks Z, Nagy P, Falcone T, Andersen C, Hovatta
O, Wallace H, Meirow D, Gook D, Kim SH, Tzeng CR, Suzuki S,
Ishizuka B, Dolmans MM. Recommendations for fertility preserva-
tion in patients with lymphoma, leukemia, and breast cancer. J Assist
Reprod Genet. 2012 Jun;29(6):465468.
21. Thygesen KH, Schjdt I, Jarden M. The impact of hematopoietic stem
cell transplantation on sexuality:a systematic review of the literature.
Bone Marrow Transpl. 2012 May;47(5):716724
22. Martin PJ, Counts GW Jr, Appelbaum FR, Lee SJ, Sanders JE,
Deeg HJ, Flowers ME, Syrjala KL, Hansen JA, Storb RF, Storer
BE. Life expectancy in patients surviving more than 5years
after hematopoietic cell transplantation. J Clin Oncol. 2010 Feb
20;28(6):10111016.
23. Syrjala KL, Langer SL, Abrams JR, Storer B, Sanders JE, Flowers ME,
Martin PJ. Recovery and long-term function after hematopoietic
cell transplantation for leukemia or lymphoma. JAMA. 2004 May
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24. Sun CL, Francisco L, Baker KS, Weisdorf DJ, Forman SJ, Bhatia
S. Adverse psychological outcomes in long-term survivors of
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25. Syrjala KL, Artherholt SB, Kurland BF, Langer SL, Roth-Roemer
S, Elrod JB, Dikmen S. Prospective neurocognitive function over
5years after allogeneic hematopoietic cell transplantation for cancer
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2011 Jun 10;29(17):23972404.
26. Syrjala KL, Martin PJ, Lee SJ. Delivering care to long-term adult sur-
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20;30(30):37463751.
 CHAPTER23
HIV Infection and
AIDS-Associated Neoplasms
Joanna S.Dognin and Peter A.Selwyn
Effective highly active antiretroviral therapy (HAART) has
altered the landscape of human immunodeficiency virus (HIV)
treatment, dramatically increasing survival rates and decreasing
the incidence of certain co-occurring cancers.14 Cancer diag-
noses in HIV-infected persons can be classified as either can-
cer associated with an acquired immune deficiency syndrome
(AIDS) diagnosis (AIDS-defining malignancies, or ADMs), or
cancers not specifically associated with HIV (non-AIDS-defining
malignancies, or non-ADMs). In countries with ready access to
HAART, ADMs have sharply declined. Yet morbidity and mor-
tality related to non-ADMs have increased due to the aging of the
HIV population, changes in cancer trends in the general popula-
tion, and complex factors related to having HIV disease.5 Acom-
parison between the periods of 19911995 and 20012005 reveals
non-ADM incidence rates increased eightfold for prostate cancer,
sevenfold for anal cancer, fivefold for liver cancer, and twofold
for lung cancer.4,6 Such substantial shifts in non-ADM incidence
point to emerging areas of clinical and public health need. In this
chapter we will describe the cancer burden among the HIV popu-
lation, present three case examples that illustrate the impact of
HIV and cancer on the psychological health of individuals and
families, and advocate for an integrated behavioral medicine
framework. Finally, we will discuss changes in palliative care and
the need to combine curative therapies with palliative care in the
fourth decade of HIV/AIDS.
CANCER BURDEN IN THE HIV POPULATION
People with HIV infection and AIDS are at increased risk for
developing both ADMs and non-ADMs. Approximately 30%
40% of HIV-infected patients are likely to develop malignancies.7
The three AIDS-defining malignancies are Kaposi sarcoma (KS),
caused by human herpes virus 8 (HHV8); various non-Hodgkins
lymphomas (NHL), some of which are caused by Epstein-Barr
virus; and cervical cancer, caused by oncogenic subtypes of the
human papillomavirus (HPV)6 (Table 23.1). Since 1996, the
availability of HAART led to a sharp decline in the incidence of
ADMs 6 due to improved immune function and enhanced host
defenses against oncogenic viruses with HIV treatment. Of note,
ADMs still pose a significant health threat in situations where
HAART is unavailable or when patients fail to adequately adhere
to medications, underscoring the necessity of early and consistent
use of HAART to decrease incidence of ADMs. 5 In contrast to
the decline in ADM incidence, the sharp increase in non-ADMs is
more poorly understood, and has often been attributed to aging,
smoking, alcohol abuse, and exposure to hepatitis viruses.2,8
From a population health perspective, three population-level vari-
ables may help explain these shifting patterns:demographic struc-
ture (aging of the HIV population); background rate (changes in
rates of anal, breast, colorectal, liver, and lung cancers in the larger
population); and relative risk factors (increased host vulnerabil-
ity, poor immune control of oncogenic viruses, consequences of
chronic inflammation and persistent viral infection, tobacco use,
and lower cancer screening rates).2,9
Two factors account for the aging of the HIV population (demo-
graphic structure):the widespread use of HAART extended the
lives of HIV-infected individuals an average of 10 years, 5 and
adults aged 40 and over comprise the fastest group of new HIV
infections.2 The graying of the HIV population not only renders
them susceptible to the same cancers that typically impact older
adults (colorectal and breast) but it renders them more susceptible
to these same cancers. Even after controlling for traditional cancer
risk factors, HIV-infected persons are burdened with a larger inci-
dence of non-ADMs than the general population, and are affected
at younger ages with more aggressive or advanced stage disease.3
Cancer rates in the general population (background rate)
interact with cancer incidence in an HIV population in myriad
ways. Liver cancer has increased in the general population due to
exposure to hepatitis B and C; the high prevalence of hepatitis in
the HIV population helps account for their higher incidence of
liver cancer. 5 Lung cancer rates have decreased among the gen-
eral population due to lower smoking rates; similarly, incidence
rates among HIV persons have also stabilized and have begun to
decline.4,5 However, gradual declines in breast and colorectal can-
cer rates in the general population are not mirrored in the HIV
population, which may be due to the aging of the HIV population,
increased host vulnerability, certain co-infections, or the impact
of different preventive screening practices (discussed below). 5,10
Factors specifically increasing cancer risk for HIV-infected
persons (relative risk) are complex and vary by cancer. Relative
risk factors encompass immunological factors, medical screening
practices, and specific behavioral risks. Poor immune control of
156 Section IV psychological issues related to site of cancer
Table23.1 Types of AIDS-Defining and Non-AIDS-Defining
Malignancies
AIDS-Defining Malignancies (ADM) Non-AIDS-Defining Malignancies
Kaposis sarcoma Hodgkins disease
Non-Hodgkins lymphoma Prostate cancer
Invasive cervical cancer Anal cancer
Lung cancer
Testicular cancer
Head and neck cancer
Colorectal cancer
Melanoma
oncogenic viruses elevates cancer risk for HIV-infected persons;5
independent associations have been found between non-ADMs
and lower current CD4 count or cumulative exposure to lower
CD4 counts; and, ironically, prolonged survival in an immuno-
compromised state renders patients with AIDS susceptible to a
growing range of complications and comorbidities.3 Further, the
literature demonstrates that despite frequent interactions with
the healthcare system, HIV-infected persons are less likely than
same-aged non-HIV-infected persons to be routinely screened for
cancer,11 especially colorectal10 and breast cancers.12 In addition
to patients with HIV not effectively engaged in care, a bifurca-
tion of care may account for this disparity, as many HIV patients
attend infectious disease13 practices for their HIV treatment while
seeking their primary care elsewhere.11
Treating the whole person is difficult when care is parti-
tioned between different medical services:specialists may be less
informed about preventive health screening recommendations,
generalists may underestimate the impact of HIV on increased
cancer risk, or either provider may expect the other to screen,
and thereby will miss the possibility of HIV patients being struck
by non-ADMs at earlier than expected ages or more aggressively
than in the general population. One such example is lung can-
cer, a common non-ADM for HIV-infected persons.4,8 While the
underlying mechanism is not entirely understood, HIV-infected
persons are at increased risk of lung cancer independent of their
smoking behaviors.4 In addition to this increased risk, there is an
extremely high prevalence of smoking among HIV-infected per-
sons, with estimates ranging from 30% to 85% (compared to 20%
25% in the general population14). Increased vulnerability to lung
cancer coupled with high smoking rates is a particularly lethal
combination. Lung cancer is now a leading cause of cancer death
in the HIV-infected population, accounting for nearly 30% of all
cancer deaths. HIV-infected persons often contract lung cancer
2530years earlier than the general population and with lower
amounts of tobacco exposure.4,15
Thus, HIV-infected persons are at higher risk for develop-
ing non-ADMs due to their advancing age, the complex ways in
which their immunological functions interact with oncogenic
viruses, poorer cancer screening practices, and behaviors more
highly associated with cancer (i.e., tobacco and alcohol use).
Taken in sum, the twenty-first century context of HIV/AIDS
is one of not only a chronic disease but also a cancer risk factor.
Coming to terms with HIV as a chronic disease requiring daily
self-managementas well as a risk factor for potentially future
deadly diseasesimparts multiple psychological conflicts on its
sufferers. Next, we will present a family systems model and dis-
cuss three case vignettes illustrating the interactions between an
individual, his or her illness, and family functioning.
FAMILY SYSTEMS ANALYSIS
John Rollands integrative family systems-illness model16 serves
as a guide for our systemic analysis of disease and family. Living
with a life-threatening illness does not occur in isolationall
individuals are members of complex family and social systems
that impact their psychosocial functioning and ability to cope
with the tasks involved in chronic disease self-management. Due
to the specific psychosocial risk factors (substance abuse, homo-
sexual activity) frequently responsible for HIV transmission,
many HIV-infected individuals are strained from their families
and develop outside communities of support. Nonetheless, when
we refer to family, we include an individuals identified support
network, regardless of whether these individuals are technically
considered a traditional nuclear family. In a family system, illness
itself becomes like a family member, with each illnesss personal-
ity being determined by the illnesss psychosocial typology (or
disease characteristics) and the time phase in which it strikes. An
individuals experience of a particular illness is shaped by both
disease and family factors.
An illness places particular requirements for social support
on families. These requirements are influenced by the following
factors:
1. Disease psychosocial typology (onset, course, outcome, and
incapacitation)
2. Disease time phase (crisis, chronic, or terminal)
3. Family functioning (structure, communication processes, life
cycle, and belief systems)
4. Familys multigenerational experiences with illness, loss,
andcrisis
5. Individuals life cycle
6. Familys health and illness belief system
7. Amount of physical anticipatory loss.16
The ability to cope with a chronic disease is determined by the
psychosocial meaning that the disease has to the patient, soci-
ety, and family, the time of life when it strikes, its intensity, and
how long it is expected to persist. The psychological circumstance
under which HIV occurs often depletes the emotional resources
of its sufferers, a situation that may be exacerbated by the addi-
tion of a cancer diagnosis. The psychosocial resources one has
(or has not) gathered to cope with the demands of HIV may not
be the same as those needed or available for coping with cancer.
Requirements for coping with each particular illness can better be
understood through exploration of the psychosocial typology or
personality of each illness.
The personality or psychosocial typology of HIV/AIDS is rad-
ically different before and after the availability of HAART. Before
1996, the psychosocial typology of HIV/AIDS was truly dire (see
Table 23.2). In the pre-HAART era, the disease was categorized
by a gradual symptomatic presentation, progressive course, severe
incapacitation, and a fatal outcome. Individuals and families were

Table23.2 Psychosocial Typology of Illness, HIV/AIDS Versus Cancer
Illness HIV/AIDS
Time Phase Pre-HAART HAART era
Onset Gradual Gradual
Course Progressive Progressive
or
Relapsing
Outcome Fatal Shortened life
span
or
Fatal
Incapacitation Severe Mild, Moderate
or
Severe
Adapted from Rolland J.Families, Illness and Disability. NewYork:Basic Books; 1994.
tasked to cope with a more short-term but severe health crisis,
in which the major task involved preparation for death. Once
HAART became readily available, the psychosocial typology of
HIV/AIDS became less grim but far more uncertain. For some, the
disease course continues to be progressive, while for others, long
asymptomatic periods are followed by severe exacerbations that
are managed with different regimens. Coping with HIV in the
post-HAART era also leads to variable physical, emotional, and
social levels of incapacitation. Superimposing a cancer diagnosis
on HIV disease further complicates the psychological picture. The
psychosocial typology of cancerits course, outcome, and inca-
pacitationdepend on the particular type of cancer, its location,
and malignancy. Managing a new cancer diagnosis, regardless of
its severity, adds significant psychosocial demands to an already
emotionally taxed individual and family system. The following
three case examples illustrate the ways in which the psychological
demands involved in coping with HIV and cancer increase uncer-
tainty about the future and complicate family functioning.
Case 1
Maria is a 37-year-old Latina female who contracted HIV eight
years ago from heterosexual contact with her husband. She was
HIV tested after her husband became mysteriously and gravely ill
and subsequently died from an infection secondary to AIDS. After
the death of her husband, the discovery of his concealed same-sex
affairs, and her subsequent HIV diagnosis, Maria grew progres-
sively more isolated. She kept both her own HIV status and the true
cause of her husbands death hidden from her friends and fam-
ily. Two years ago, she successfully began a HAART regimen, and
entered into a new romantic relationship. As the relationship devel-
oped, she revealed her HIV diagnosis to him. At first, he appeared
incredibly supportive and took it upon himself to parcel out her
daily medications. Over time, he became increasingly more control-
ling, and began sporadically withholding her medications from her.
As she became even more isolated, she was dealt another blow when
she received a cervical cancer diagnosis.
As she began cancer treatment, her partner once again appeared
the model boyfriend, caring for her through her chemotherapy and
Chapter23 hiv infection and aids-associated neoplasms 157
impressing her medical providers with his constant attention toward
her. Once the immediate crisis around her health again subsided,
Cancer his controlling behavior increased and soon erupted into physical
violence. He threatened to expose her HIV status if she attempted
to leave him. He regularly reminded her that her diagnoses of HIV
Gradual and cancer likely prevented her from having any children, and that
Progressive
she was fortunate he was even still with her.
or
Relapsing For Maria, the psychosocial meaning of HIV is intricately
linked with her husbands betrayal. Her feelings around this are
Nonfatal (benign) unresolved, and are complicated by both grieving his death and
or the fact that he left her with the same disease that killed him.
Fatal (malignant) The legacy of secrets that began with her husbands indiscretions
continues for Maria, as she begins to isolate herself from her sup-
Mild, Moderate port network. Her unresolved grief, anger, lowered feelings of
or self-worth, and isolation, combined with her desperate need to
Severe still relate, create the perfect backdrop for her to partner with
an over-controlling man. The psychosocial impact of her cancer
diagnosis is also great:both diseases strike during the life cycle
phase when she would have considered having children. The com-
bination of both a sexually acquired, socially stigmatized disease
and a cancer in the reproductive area symbolically seal the loss of
this dream, which her partner uses to further shame, control, and
isolate her.
This case illustrates how the social stigma of HIV, combined
with a second diagnosis of cancer, can disrupt individual and
family functioning. While HAART has significantly decreased
physical incapacitation from HIV, emotional and social incapaci-
tation can still be severe. The choice of partners for HIV-infected
persons can be problematic, especially when one is disenfran-
chised and isolated by fears of disclosure and stigma. The context
in which HIV often occurspoverty, substance abuse, isolation,
risky sexual behaviors, or having partners with high-risk behav-
iorsmakes it no surprise that for HIV-positive women, intimate
partner violence is more frequent, more severe, and associated
with worse health outcomes.1720 Vulnerability toward abuse is
heightened for the HIV-infected person when an abusive partner
also retains the power to disclose ones status or withhold medica-
tion. Given this context, an additional cancer diagnosis may fur-
ther stall a persons individual and family life cycle path and may
maintain a system of power inequity between partners that can
contribute to partner abuse.
Case 2
Anton is a 22-year-old white male of Italian descent admitted to
the hospital with pneumonia. He is given an HIV test and is diag-
nosed with full-blown AIDS. Given his extremely low CD4 count,
his providers hypothesize that he likely became infected with HIV
as an adolescent. While Anton had never before been tested for
HIV, he suspected he might be positive after a former male part-
ner became sick. Anton lives with his parents and brothers, who are
unaware of his sexual orientationthey are Catholic and he fears
their rejection if they knew he was gay. Given that, he had avoided
being tested and remains fairly uneducated about HIV prevention
and treatment. When confronted with his HIV diagnosis and treat-
ment options, Anton begs the hospital staff not to tell his family and
is unwilling to discuss starting HAART. Upon discharge, he never
follows up with his doctor, and is hospitalized again within two
158 Section IV psychological issues related to site of cancer
months. During this second admittance, he is also diagnosed with
lymphoma. Upon hearing about the cancer, Anton is relieved, feel-
ing that he finally has a legitimate reason to give his family for his
continued poor health. His family holds vigils around his bedside,
and is extremely supportive and attentive to his needs around hav-
ing cancer. He still refuses to share his HIV status or sexual orienta-
tion with them, and dies from his lymphoma three months later.
For Anton, the psychosocial meaning around having HIV
is complete and utter rejection by his family unit. He remains
so fearful of their reaction that he steadfastly avoids potentially
life-saving treatment. At 22, Antons normal life cycle stage would
be to develop independence and accept responsibility for him-
self, 21 but his first attempts to differentiate (separate) from his
family and develop intimate peer relationships leave him with a
disease that he fears would be completely unacceptable to his fam-
ily, and ultimately contributes to his death. In contrast, he receives
his cancer diagnosis very differently:with ironic relief, as it pro-
vides him with an acceptable reasonone in which he can main-
tain blamelessnessfor being sick. The cancer diagnosis unites
his family, calls upon their collective resources for support, and
provides a socially acceptable reason for Anton to be ill and to die.
In describing how certain diseases evoke powerful societal met-
aphors, Susan Sontag stated, societies need to have one illness
that becomes identified with evil, and attaches blame to its vic-
tims.16 Before the first AIDS case, cancer was such a diseasea reactivate earlier anxieties around coming out as a gay man and
deep societal metaphor centering on lack of control and certain
death. To protect against the fears this elicits, blame was often
assigned to its victims for behaviors that may have contributed to
their plight. Over the last 25years, HIV/AIDS has become an even
more powerful metaphorthe impact of this metaphor is clearly
depicted in situations like Antons, in which the family belief
system around what it means to have HIV serves as a barrier to
benefiting from medical advances. In so doing, the psychosocial
typology of HIV/AIDS harkens back to the pre-HAART era with
severe incapacitation and a fatal outcome.
Case 3
Sam is a 55-year-old African American openly gay male, who
considers himself a longtime survivor after living with HIV for
the past 20years. He has lived through the deaths of many friends
and lovers, through hopes for new treatments, and numerous ups
and downs in his own health. In the early days of the epidemic,
he steadfastly avoided AZT (azidothymidine, or zidovudine, the
first approved antiretroviral agent), watching his friends and lovers
suffer serious side effects. He conquered a serious cocaine problem,
and relishes the fact that his years of homelessness and addiction
are long behind him. Now at 55, he is more stable than everhe
works as a peer educator, using his story to spread hope and HIV
prevention messages to younger generations. His virus is well con-
trolled with his HAART regimen, and he lives with his longtime
partner, who is also HIV-positive. After receiving a diagnosis of
prostate cancer, he becomes deeply angry and depressed. He expe-
riences the diagnosis as an unfair obstacle given all he has already
survived.
Unlike the first two cases, HIVs psychosocial meaning is quite
different for Sam: he has a community of social support, and
many models for coping with the tremendous stress of having
HIV. He has, in a sense, aged with the epidemic, and thus the
history of HIV and his life story have become intricately linked.
His HIV narrative contains themes of overcoming addiction,
engaging in fuller self-care, and contributing to future genera-
tions through education and advocacy. At 55, he has lived longer
than he expected, and while he still fears the toll HIV is taking
on his body, HIV is a known entity, and thus is less frightening.
He has a long-term partner and a community whose illness belief
model empowers and helps him in his healing. Anew diagnosis
of cancer is a very different story. At 55, he has entered a life stage
where chronic illness is more expected, and therefore a diagnosis
of prostrate cancer is timelier. Yet Sam has no cognitive model
involving life with cancer. Further, in his life narrative, he has
already struggled with a deadly disease, and to be struck with
a second one feels unjust and reactivates fears about his own
mortality.
Prostate cancer is the second leading cause of cancer death in
men.22 African American men, who are also disproportionately
affected by the HIV epidemic, have both higher incidence and
mortality from prostate cancer.23 Sams vignette represents the
challenges a prostate cancer diagnosis may pose for HIV-positive,
gay, African American men who often experience being triply
discriminated against for their race, sexual orientation, and HIV
status. Additionally, disclosing a prostate cancer diagnosis may
coming out as being HIV positive.24 Initiating prostate cancer
treatment poses further challenges: within the gay community,
HIV-positive men have access to many HIV specializing physi-
cians who are sensitive and knowledgeable about the health issues
of gay men. Finding urologists who are sensitive to issues faced
by gay HIV-positive men can be far more challenging. Finally,
treatment for prostate cancer may cause ejaculation problems and
erectile dysfunction,25 impacting sexuality, which furthers feel-
ings of stigmatization.
Throughout all three of these preceding cases, HIV exacts tre-
mendous emotional, physical, and social tolls. Maria struggles
with unresolved grief and isolation, while Anton denies his true
self from his family to the extent of also rejecting life-saving treat-
ments. Both devote enormous emotional reserves to maintaining
their secrets. Sam, on the other hand, lives without the burden of
secrets but has named his battle with HIV as such a central theme
in his life that little room is left for additional struggle. The new
cancer diagnoses function for these patients as a mechanism that
further drives these secrets underground, contributing to inti-
mate partner violence for Maria and premature death for Anton.
For Sam, the cancer diagnosis reactivates earlier experiences of
shame and places demands for additional emotional resources.
Given the psychological impact of a cancer diagnosis in the con-
text of HIV, it is not surprising that many HIV-positive individu-
als struggle with depression, 2628 post-traumatic stress disorder
(PTSD), 2628 medication adherence problems, 29 drinking, 26,27
and smoking.4,15 Coping with the emotional and physical burden
of HIV and comorbid cancers is a major task for patients seek-
ing mental health services, and one that can best be managed in
an integrated care setting. Receiving mental health care within
the context of an integrated team approach is critical to address
the intertwining physical, social, and emotional needs involved in
managing both HIV and cancer.
 Chapter23
A BEHAVIORAL MEDICINE FRAMEWORK
An integrated team model is ideal for addressing the behavioral,
psychological, and medical factors that contribute to higher HIV
morbidity and mortality and increase risk for developing cancer.
Such a model is also consistent with the healthcare paradigm shift
in the 2010s toward patient-centered medical homes. Medical
homes may potentially transform healthcare by improving
patient access, fostering personal relationships between patients
and their healthcare team, emphasizing shared decision-making,
and improving quality and safety. Medical homes rely heavily on
effective collaboration among healthcare providers. Physicians,
psychologists, nurses, social workers, pharmacists, dieticians, and
administrative staff must work together in a well-integrated fash-
ion.30 Effective interdisciplinary collaboration and communica-
tion are essential in providing for the multiple healthcare needs
of HIV populations, including high rates of mental health comor-
bidities, 2628 necessity of near perfect adherence to HAART to
stave off AIDS29 and ADMs, 5 higher behavioral health factors
that increase cancer risk,4,15 and a need for early screenings for
breast,12 colorectal,10 and lung11 cancers.
In all three of our cases, psychosocial distress and mental health
comorbidities contributed strongly to the individuals difficulty in
managing the demands of HIV and cancer. An integrated clini-
cal setting provides access to mental health providers for manag-
ing depression, PTSD, and substance abuse, as well as increasing
social supports and improving chronic disease self-management.
Maintaining near perfect adherence to HAART is a cornerstone
of HIV self-management. However, adherence requires psycho-
logical mastery across several psychosocial areas:acceptance of
positive HIV status and tolerance of the daily reminders of having
a disease; effective depression management for improved energy
and motivation for selfcare; and social and community sup-
port of ones illness and need for treatment. Medical and mental
health providers tackling the therapeutic challenges involved in
antiretroviral adherence benefit greatly from each others exper-
tise in understanding the psychological and physical demands of
medication regimens, and from collaborating on the challenges
that HIV treatment regimens evoke. By working in an integrated
fashion to improve treatment adherence, HIV-infected individu-
als improve their immune functioning as well as reduce the likeli-
hood of developing AIDS-defined cancers.
An integrated team approach may also ameliorate risk factors
for cancers not specifically associated with HIV/AIDS. As dis-
cussed earlier, tobacco use is highly associated with increased
lung cancer risk in HIV-infected persons, yet quitting smoking
is the single most difficult behavior to change, with the average
smoker making seven quit attempts before being successful.31
Effective tobacco cessation treatment involves both the motiva-
tional interviewing skills and psychoeducational expertise of
behavioral health specialists, as well as medical management of
nicotine replacement therapies and psychotropic medications
used for smoking cessation. Providing cross-disciplinary care in
a setting sensitive to an HIV-infected populations holistic needs
not only decreases tobacco rates but also provides opportunities to
screen earlier for lung cancer. Additionally, HIV-infected patients
also have higher rates of hepatitis B and C, a risk factor for hepa-
tocellular (liver) cancers, 22 and decreasing liver cancer incidence
requires interdisciplinary attention. Effective interdisciplinary
hiv infection and aids-associated neoplasms 159
treatment for hepatitis involves eliminating alcohol, managing
depression, and tolerating the multiple medical and psychiatric
side effects associated with interferon treatment.32
Finally, a team-based approach involves health promotion
efforts essential to preventing future chronic disease incidence,
such as breast, prostate, and colorectal cancers. In a multisite ran-
domized controlled trial with African American HIV-infected
individuals, intensive education on the relationship between
certain health risks (diet, alcohol, preventive screenings) and
cancer resulted in improved prostate cancer screening and mam-
mograms. 33 Increasing physical activity is another behavioral
change often targeted by health promotion initiatives; one study
of a large-scale multicenter cohort of HIV-infected patients found
a significant relationship between physical inactivity, depression,
poor HAART adherence, and viral load. 34 Therefore, incorporat-
ing health promotion interventions into team-based HIV care is
an essential component for improving health and decreasing can-
cer risk.
PALLIATIVE CARE AND END-OF-LIFE ISSUES
The availability of HIV-specific therapies has altered the way in
which palliative care is viewed for patients with HIV. In the first
decade of the epidemic, death swiftly followed an HIV diagnosis,
usually within months, and HIV care was almost fully under-
stood in the context of palliative care.35 Yet as protease inhibitors
became available in the mid-1990s and mortality rates began to
decline, the view of HIV care shifted to a chronic disease model,
and thus interest in HIV palliative care was replaced by optimism
for curative therapies. Despite this, HIV/AIDS continues to
cause considerable morbidity and mortality. 36
While the death rate due to HIV/AIDS dropped sharply fol-
lowing the advent of HAART, that decline has since plateaued;
currently there are approximately 15,000 deaths per year due
to HIV/AIDS in the United States. The reduction in morbid-
ity and mortality has not universally affected all demographic
groups: HIV-infected whites have experienced improved out-
comes, but African Americans and Latinos with HIV have not
experienced the same rates of improvement. HIV/AIDS contin-
ues to be a leading cause of death for young African American
and Latino men and women aged 2050.36 The ability to access or
adhere to treatment regimens has been problematic for patients
with psychiatric illness, substance abuse, or other severe psycho-
social stressors. Even patients who have the social and emotional
resources to access and adhere to HAART can still experience
progressive viral resistance despite therapy. 35 Finally, mortal-
ity rates among HIV patients have been steadily increasing from
co-occurring diseases such as both ADMs and non-ADMs, as well
as hepatitis B and C. Analyses of causes of death among AIDS
patients have consistently found that 19%28% were due to malig-
nancies, 3739 with lung cancer identified as the leading cause of
cancer death in the HIV-infected population.15 Thus, palliative
care remains a focal point in HIV care.
As HIV-infected patients live longer and develop more symptoms
related to opportunistic infections and cumulative medication
toxicity, a more integrated palliative care model is requiredone
that allows for the continuation of potential curative therapies
with symptom specific treatments.40 In the HAART era, HIV pal-
liative care issues include diagnosis, management, and treatment
160 Section IV psychological issues related to site of cancer
of pain; management of medical and mental health symptoms;
attention to drugdrug interactions; prognosis and advance care
planning; and decisions around when is the right time to with-
draw disease-specific therapies. 36 Major challenges currently
exist to incorporate the science of palliative care with the hope-
fulness of life-sustaining treatments, especially in the context of
co-developing malignancies and other significant morbidities.
CONCLUSION
As HIV disease extends into the epidemics fourth decade, those
infected have aged and have shown a growing vulnerability to
many comorbidities and chronic disease states, which patients in
earlier eras often did not live to experience. Of note in this context,
long-surviving patients have started to exhibit increased risks for
a range of non-AIDS-defining cancers, including both at younger
ages and in more aggressive forms than non-HIV-infected
patients. HIV disease is now not just a chronic disease but also
a cancer risk factor, requiring infected individuals to balance
the daily self-management demands of HIV with the possibili-
ties of acquiring an additional deadly disease. In the context of
healthcare reform, HIV care may benefit from the creation of
medical homes and teams that treat comorbid mental health and
medical conditions, decrease behavioral risk factors (smoking,
drinking) for developing cancer, and incorporate health promo-
tion efforts (early cancer screening). However, given the tremen-
dous mortality still exacted by HIV disease and malignancies, a
twenty-first-century HIV team model must also incorporate and
integrate palliative care and end-of-life care expertise into the
comprehensive care of patients living and dying with HIV.
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 CHAPTER24
Tumor of Unknown Primary Site
Anna M.Varghese and Leonard B.Saltz
INTRODUCTION
The term cancer of unknown primary (CUP) represents a diverse
group of diseases that accounts for approximately 2% of cancer
diagnoses. Unknown primary cancer presents complex challenges
in diagnosis and therapy and generally implies a poor prognosis.
Older literature indicates extremely limited therapeutic options
and an overall median survival of 410months. More recent trials
have suggested a somewhat better outcome; however, these trials
have been more selective of favorable performance status patients,
which may account in total or in part for the better outcomes than
those of historical comparators.1,2 Favorable clinical outcomes are
typically limited to those patients in more treatable subgroups of
CUP or those for whom a more favorable histologic diagnosis can
be identified.1,3 Oncologic management of CUP consists of the
following:(1)reasonable attempts to establish the CUP diagnosis
with age-appropriate and symptom-directed testing; (2)a search
for alternative diagnoses with better prognoses; and (3)attempts
to identify factors that would establish the patient as a member
of a more treatable subgroup of unknown primary cancer. While
most patients with new diagnoses of cancer struggle with anxiety
and uncertainty surrounding their diagnoses, psycho-oncologists
must acknowledge that patients with CUP contend with even
higher levels of uncertainty. Also, since an unknown primary
cancer is by definition metastatic at the time of initial diagnosis,
issues reflective of the advanced stage of disease must be con-
fronted early in the patients adjustment to the illness.
Definition of Cancer of Unknown Primary
The term cancer of unknown primary (CUP) lacks a strict,
universally accepted definition and is frequently referred to as
carcinoma of unknown primary, adenocarcinoma of unknown
primary, occult primary cancer, or anaplastic tumor of unknown
primary. The lack of strictly defined criteria makes interpretation
of the literature regarding unknown primary cancers difficult.
Atumor biopsy is necessary to confirm a cancer diagnosis and
also permits immunohistochemical evaluation to identify a pri-
mary site of disease. In addition to this pathologic investigation,
reasonable studies to establish the diagnosis and to identify a pri-
mary site of disease include a thorough medical history, physical
examination, and computed tomography (CT) scan of the chest,
abdomen, and pelvis. While some have advocated use of positron
emission tomography (PET) scans, the true utility of PET scans in
identifying a primary is debatable.4
The primary site of the tumor will never be found in a large
number of patients with CUP despite a comprehensive diagnostic
evaluation. Even in autopsy series, 15%27% of patients will not
have a discernible origin of their disease, possibly attributed to
either extensive carcinomatosis that obscures the primary or to
the immunological destruction of the original primary tumor.58
The most common primary sites identified during post-mortem
investigation include lung and pancreas, while primary sites of the
liver, ovary, prostate, kidney, and bile duct account for the pri-
mary to a lesser extent.9
The Diagnostic Evaluation of Cancer
ofUnknownPrimary
As mentioned above, the evaluation of the patient with CUP
begins with a detailed medical history and physical examination.
Laboratory evaluation includes a complete blood count and bio-
chemical screening profile to assess hepatic and renal function.
The use of CT scanning in patients with CUP has become rela-
tively routine.
Routine endoscopic evaluations are not recommended in the
absence of symptoms or signs suggesting a gastrointestinal (e.g.,
blood in the stool, microcytic anemia, abdominal pain, etc.) or
thoracic (e.g., hemoptysis, cough, or dyspnea) primary. Despite
these recommendations, such endoscopic studies, particularly
of the gastrointestinal tract, are commonly performed as part
of the diagnostic evaluation, although they are rarely successful
in identifying the primary. Clarification of the diagnosis from a
metastatic CUP to a metastatic gastrointestinal cancer does not
improve the patients prognosis or the efficacy of treatment. An
exception would be in a patient with potentially resectable meta-
static disease confined only to the liver (i.e., no nodal, mesenteric,
or extra-abdominal disease). In such a patient, identification of a
colon primary would allow a possible surgical treatment option
with the potential for cure and long-term survival.
Pathologic Evaluation
Following the initial clinical diagnosis of CUP, expert histologi-
cal evaluation is required to ensure that the tumor is indeed a
carcinoma and does not represent another form of malignancy
such as melanoma, sarcoma, or a far more treatable malignancy
such as lymphoma. If indicated, the pathologist may employ
specific immunohistochemical stains to confirm this diagnosis.
Further pathologic characterization is rarely of substantial benefit

should the initial pathologic evaluation reveal a moderately to
well-differentiated adenocarcinoma, although some investigators
have attempted to utilize immunohistochemical characterization
for further analysis.10
Further study is warranted should the tumor display a poorly
differentiated or anaplastic appearance. Specific immunohisto-
chemical studies may be employed to confirm or exclude a lym-
phoma, a far more treatable malignancy with a significantly more
favorable prognosis.11 Although not specific, the leukocyte com-
mon antigen (LCA) is a highly sensitive marker for lymphoma
and is frequently employed in this type of evaluation. Adiagnosis
of lymphoma is essentially excluded in the presence of a nega-
tive LCA and positive cytokeratin, the hallmark of carcinomas.
Within the cytokeratin-positive carcinomas, a thyroglobulin
stain should be sought to rule out a thyroid primary. Markers for
neuroendocrine differentiation, such as chromogranin, synapto-
phytin, or a Gremelius stain are used to rule out the presence of
neuroendocrine tumor of unknown primary.12
Cytogenetics
Cytogenetic evaluation has been employed to facilitate the iden-
tification of the origin of poorly differentiated tumors. Astudy at
Memorial Sloan-Kettering Cancer Center examined 40 patients
who presented with a poorly differentiated carcinoma.13,14 Thirty
percent (17/40) of patients had an isochromosome 12p (i12p)
abnormality identified with a southern blot analysis and/or flo-
rescence in situ hybridization; i12p abnormality is a chromosomal
aberration associated with germ cell tumors. This group of patients
achieved a 75% response rate to cisplatin therapy as compared to a
response rate of 18% in the larger group of patients who presented
with a carcinoma, suggesting that patients with CUP harboring
an i12p abnormality in fact had atypical presentations of germ cell
tumors. Cytogenetics can also be used to identify mutations sug-
gestive of Ewing sarcoma or lymphomas, both of which have spe-
cific and effective chemotherapeutic treatment options.
Tumor Markers
Germ cell tumor markers should be checked when evaluating
a male patient with a poorly differentiated unknown primary
cancer. An elevated prostate-specific antigen (PSA) should be
obtained in appropriate older male patients given the option for
hormonal therapy. A serum thyroglobulin can be used to rule
out a thyroid primary. Other serum tumor markers are less use-
ful. Markers such as carcinoembryonic antigen (CEA), CA-125,
and CA 19-9 are not specific enough for any particular tumor to
be used for diagnostic purposes, and are not appropriate for the
workup of a CUP.
Positron Emission Tomography
Positron emission tomography (PET) scans, rightly or wrongly,
have become a common diagnostic test in the evaluation of CUPs.
While some have argued that PET scans should be a routine part
of the workup of CUPs, the role of PET scans in CUP remains
unclear.4,15,16 The literature that supports the use of PETs assumes
that identification of a primary site of disease is worth pursuing,
and hence assumes that identification of the primary will improve
patient outcomes. However, identification of a primary is unlikely
to meaningfully change patient outcomes, except for those cases
Chapter24 tumor of unknown primary site 163
in which pathologic and laboratory evaluation reveals an alterna-
tive diagnosis with a better prognosis or inclusion of the patient
into a more treatable subgroup of unknown primary cancer.
Also, the added utility of PET scans to identify a primary remains
unclear, particularly when high quality cross-sectional imaging
is available.
Finally, the literature surrounding PET scans in CUP is diffi-
cult to interpret since it is limited by small numbers of patients,
inconsistent definitions of CUP, and heterogeneous conventional
radiographic evaluations. For instance, Seve et al. performed
a meta-analysis of 10 studies including 221 patients in which a
reported 41% of patients had a primary identified that was not
identified with prior traditional evaluation, concluding that PET
was an efficient method for identifying a primary.4 The applicabil-
ity of this meta-analysis to the workup of all CUPs is limited, as
the majority of patients included in this meta-analysis (94%) had a
single site of disease, a clinical scenario that comprises a minority
of patients with CUP. Additionally, only a minority of the stud-
ies included required a CT scan of the chest, abdomen, and pel-
vis, and the identification of a primary was not always confirmed
with a biopsy or tissue diagnosis. At best, this study suggests that
PET scans may have an added utility for the minority of patients
who present with a single site of disease, as PET scan may identify
additional sites of disease and consequently would impact treat-
ment decisions, a point the authors make as well. Several other
meta-analyses evaluating the role of PET in CUP are also limited
by the small numbers of patients included in each study and the
heterogeneous nature of the included studies.15,16 Finally, none of
these studies addresses how or if PET provides an added benefit
of identifying a primary for patients who now almost uniformly
have high-quality cross-sectional imaging as an initial test in their
workup of CUP.
Gene Expression and Mutation Testing
Much research and clinical interest has been directed at the utility
of molecular testing in CUPs. Commercial gene expression test-
ing to identify a primary site of disease has been most commonly
studied and used in CUPs.1719 While some have argued that these
studies should be part of routine diagnostic evaluation for patients
with CUP, it remains unproven whether these investigations affect
treatment decisions and patient outcomes.20,21
Most recently, the impact of this testing on the efficacy of ther-
apy was evaluated in a Phase II single-arm, prospective study by
Hainsworth and colleagues in which patients with CUPs under-
went gene expression profiling and received site-directed therapy
if a site of origin was identified.20 In this study 252 of 289 patients
had gene expression profiling successfully performed, and 194 of
252 patients received treatment based on the assay results, with a
median survival of 12.5months. The authors concluded that these
findings demonstrated the clear benefit of assay-directed therapy
as compared to outcomes in historical controls and suggested
that gene expression profiling to guide treatment in CUP should
become the new standard of care. However, this study leaves
several questions unanswered, and the utility of this testing to
improve patient outcomes remains unclear.21 Although this was
a prospective study, the claimed efficacy of gene expression profil-
ing was determined based on comparison of outcome to that of
historical controls, which is problematic because these historical
164 Section IV psychological issues related to site of cancer
controls and outcomes are based on reports published before the
routine use of modern imaging techniques, including magnetic
resonance imaging (MRI) and high resolution CT, and modern
supportive medications, such as ondansetron and aprepitant,
which have drastically improved patients ability to tolerate sys-
temic chemotherapy. Furthermore, some of the historical controls
cited in the report did as well as the patients in the trial.
Another question facing patients and clinicians is whether to
perform additional molecular testing to identify actionable muta-
tions in CUPs. Medical oncology has experienced a paradigm shift
toward personalized medicine over the last 15years with the intro-
duction of imatinib for chronic myelogenous leukemia, erlotinib
for EGFR-mutant lung cancer, crizotinib for ALK-positive lung can-
cer, and vemurafenib for BRAF-mutant melanoma. Appropriately,
patients with CUPs and their treating physicians are eager to
take part in this revolution through further molecular analysis of
their CUPs with research and commercial tests. Acase report of a
patient with EGFR-mutant CUP responding to erlotinib illustrates
the interest and hope for such an approach in which identification
of a targetable and actionable mutation will allow treatment with
an effective, molecularly targeted drug.22 While such an anecdote
is promising for the care of patients with CUP, the role of com-
prehensive mutation analysis and gene expression testing remains
unknown and is an area of active research; thus these tests are not
routinely recommended in the evaluation of CUPs.
Treatable Types of Carcinoma
Except in cases where the primary being sought is responsive to
available treatments and/or will otherwise change the patients
clinical management, costly radiographic studies and invasive
diagnostic procedures do not benefit the patient and may heighten
anxiety. Therefore, the workup should be geared toward ruling in
or out identifiable primaries or histologies that will convey either
a specific therapy or a more favorable prognosis. In men, germ
cell tumors are highly curable with chemotherapy and should
not be overlooked. Thus, testicular ultrasound is performed, and
serum levels of tumor markers alpha fetal protein (AFP) and beta
human choriogonadotropin (HCG) are drawn in male patients
with histology consistent with a germ cell tumor or with poorly
differentiated carcinoma. Similarly, a diagnosis of prostate carci-
noma should also be entertained since many prostate cancers are
hormonally sensitive and respond to androgen-ablative therapy.
Therefore, a serum prostate-specific antigen (PSA) is drawn in
male patients, especially in the presence of bone metastases.
In women, breast carcinomas are frequently hormonally respon-
sive and amenable to systemic chemotherapy. Thus, a careful breast
examination and mammography are performed in female patients
with CUPs. Ovarian cancer, especially when confined to the abdo-
men, carries a more favorable prognosis and also responds to spe-
cific therapy. Agynecologic evaluation of this possibility through a
careful pelvic examination (with trans-vaginal ultrasound if indi-
cated) is performed. Since the ovary is frequently the site of metas-
tasis from other tumors, the presence of an ovarian mass does not,
however, necessarily identify that mass as the primary.
Finally, thyroid carcinomas may be treatable with radioac-
tive iodine and should be taken into diagnostic consideration in
patients with CUPs as well. Aserum thyroglobulin level or stain
of the tumor tissue for thyroglobulin may be helpful.
THE IDENTIFICATION OF TREATABLE
SUBGROUPS WITHIN THE CUP
POPULATION
In cases where the workup outlined above fails to redefine the
diagnosis beyond that of unknown primary, the oncologist is then
obligated to look for specific subgroups within this diagnostic
category that may carry a more favorable prognosis. Several such
subgroups have been identified.
Male patients, typically under the age of 50, who have a poorly
differentiated histology and a tumor distribution more or less
symmetrical about the midline (i.e., retroperitoneal or mediasti-
nal adenopathy, bilateral multiple lung masses, cervical adenopa-
thy, etc.) are felt to potentially have an unrecognized extragonadal
germ cell tumor and represent one such subgroup. Careful tes-
ticular examination and testicular ultrasound are obtained, but
cisplatin-based therapy along the lines of a testicular regimen is
indicated even in the absence of an identified primary. One study
of 71 such patients demonstrated a partial response rate of 54%,
complete response rate of 22%, and a five-year disease-free sur-
vival rate of 13%.23
Solitary Site of Disease
Several small series and anecdotes have suggested that patients
with a solitary site of disease inconsistent with a primary site (i.e.,
carcinoma in a lymph node or cluster of lymph nodes) have a supe-
rior prognosis compared to patients with multiple sites of disease.
Definitive local management, including surgical resection, local-
ized radiation therapy, or a combination of the two, has resulted
in prolonged disease-free survival and some apparent cures. These
data cannot be extrapolated to patients with more than one site of
disease. Surgical debulking of unknown primary cancers and the
administration of adjuvant postoperative chemotherapy should
not be routinely undertaken.
Axillary Mass
The presentation of an isolated axillary lymph node containing
carcinoma in a female patient represents a specific and prognos-
tically favorable subgroup of CUP. Such patients are considered
to have stage II breast cancer until/unless proven otherwise.
Mammography and careful examination of the ipsilateral breast
may reveal the primary and remove the patient from the category
of unknown primary. Even if this workup is negative, evidence
suggests that a primary tumor of the breast will be identified
in greater than 50% of mastectomy specimens in patients who
undergo this procedure. 24 Modified radical mastectomy with
axillary dissection has been recommended as initial management
for otherwise healthy patients.25,26 The option of axillary dissec-
tion and whole breast radiotherapy has also been advocated. 27
While short-term follow-up appears favorable, the risk of local
recurrence in the breast remains since both the exact site in the
breast is unknown and further local control with lumpectomy
and a radiation cone-down or boost to the primary site is not
possible.
Since the disease has been clinically defined as stage II, adju-
vant chemotherapy routinely used for stage II breast cancer is
appropriate. Likewise, adjuvant hormonal therapy for hormone
receptor-positive tumors is also indicated.

Neuroendocrine Differentiation
Investigations have shown that poorly differentiated CUPs that
demonstrate immunohistochemical evidence of neuroendocrine
differentiation have a high clinical response rate to cisplatin-based
chemotherapy. In a study of 29 such patients, 24% had a partial
response, and 48% achieved a complete response, with 13% alive
and disease-free at two years.28 Chromogranin, synaptophytin, or
Gremelius stains should be utilized to investigate for neuroendo-
crine differentiation.
Oncologic Therapy of Unknown Primary Cancers
Patients with CUPs who do not fall into a favorable subgroup gen-
erally have a poor prognosis. Available data do not suggest that
systemic chemotherapy or other aggressive measures are capable
of conferring a survival advantage to treated patients. Therefore,
any therapy undertaken in these patients should be regarded as
palliative. In the absence of demonstrated efficacious therapy,
enrollment in a clinical trial of investigational agents may be
appropriately considered. In the absence of a clinical trial, treat-
ments have frequently been recommended on the basis of pre-
dominant tumor location site. Tumors predominantly above the
diaphragm are often treated with lung cancer regimens such as
carboplatin and paclitaxel. Tumors predominantly below the dia-
phragm are presumed to be more likely of gastrointestinal origin.
Fluorouracil modulated with leucovorin, either alone or with such
agents as oxaliplatin or irinotecan, is the typical chemotherapeu-
tic agent employed. Whether or not the combined use of cytotoxic
agents is more efficacious than single agents in the CUP popula-
tion is unclear at this time.
Several trials have reported the use of various chemotherapy
regimens for patients with CUPs. It is important to remember
that to enter these trials, patients were required to have suffi-
cient renal, hepatic, and bone marrow function, as well as high
enough performance status to meet the studys eligibility crite-
ria. Performance status (a measure of the patients overall energy
level and state of well-being) is a strong prognostic indicator.
Patients with a good performance status, who are up and about
most of the day and who are not actively losing weight, have a
much higher response rate and lower toxicity rate for chemother-
apies than do more debilitated patients. Thus, results of clinical
trials may not be generalizable to more debilitated patients. Also,
appreciation of performance status has increased in recent years,
and eligibility criteria for trials have become stricter. Thus, more
recent trials may represent a better prognosis group of patients
than the patients included in older studies. Regardless of these
study artifact issues, a patient with CUP who is not fully ambu-
latory or is otherwise severely debilitated with multiple medical
comorbidities is therefore usually a poorer candidate for aggres-
sive cytotoxic therapy.
PSYCHIATRIC AND PSYCHOSOCIAL
ASPECTS OF CANCER OF UNKNOWN
PRIMARY SITES
Because of the uncertainty that is engendered by a diagnosis of
CUP, clinical experience suggests that this patient population is at
elevated risk for problems of adjustment and the development of
psychiatric symptoms. This is a diverse patient population and a
Chapter24 tumor of unknown primary site 165
poorly studied group from the vantage point of quality of life and
psychosocial adjustment.
The most salient psychosocial aspects that this unfortunate
group of patients share are the following:(1)the guarded to poor
prognosis that results from the diagnosis of metastatic disease at
initial presentation; (2)the liability to psychological problems that
is associated with the inability to traverse a process of adjustment
to illness that accompanies the initial diagnosis being made in
advanced stages of disease; (3)the uncertainty that is conveyed
by the inability to locate a primary site of disease and thus limited
disease-related information; and (4)the psychological difficulties
associated with expectant observation as a primary therapeutic
approach and the failure to understand the oncology teams lack
of aggressiveness toward further diagnostic evaluation and treat-
ment. Given the grim prognosis and presence of advanced illness,
psychosocial interventions for these patients are generally brief,
supportive, and psycho-educational in nature and are focused on
issues common to patients with advanced illness (see Section VI
of this volume [Chapters3234] on palliative care).
Unlike patients with localized disease and a more favorable
prognosis, patients with CUP are denied the opportunity to accli-
mate to the reality of having cancer prior to being confronted
with issues of advanced, sometimes terminal illness. The oncolo-
gist and psycho-oncologist share the formidable task of engag-
ing the patient in open and frank discussions regarding what, if
any, treatment approaches are available, while reaffirming their
commitment to the total care for the patient. The typical levels of
denial and disbelief common to the initial stages of adjustment to
all cancer crises are sometimes more pronounced in CUP patients.
These reactions often crystallize in the patients failure to under-
stand the futility of seeking out the primary cancer and the desire
to initiate psychological chemotherapy (i.e., chemotherapy that
is unlikely to benefit the patient, other than to provide a sense of
doing something). Offering the patient emotional support and
mobilizing him or her to utilize support groups and make posi-
tive changes in lifestyle (smoking cessation, healthful diet, stress
management, exercise, if possible) will permit the patient to retain
a sense of control, hope, and optimism. When this disbelief gives
way, patients generally need assistance with anticipatory grief.
The overwhelmingly mysterious nature of CUP may contribute
to the patients poor emotional adjustment to illness. Certain levels
of depression and anxiety are to be expected in newly diagnosed
patients with CUP; however, prolonged symptoms of anxiety and
depression can unnecessarily diminish the patients quality of life
and should be the focus of care. Clinicians must address issues
common to patients with advanced disease, such as communica-
tion with family and contemplation of ones mortality. Psychiatric
consultation should be utilized to evaluate and treat psychiatric
comorbidity. The use of brief psychotherapy that reinforces posi-
tive coping skills is beneficial in helping patients face advanced
stages of illness. Pharmacological interventions may be utilized
to treat distressing symptoms such as fatigue, sleep disturbances,
and more formal psychiatric syndromes, much as they are in other
patients with advanced cancer. It is important to recognize the
significant role of psychiatric treatment in the palliative care of
patients with CUP. Untreated psychiatric conditions can be mis-
takenly viewed as normal consequences of such difficult situations
and consequently can be quite debilitating and can worsen prob-
lems of patient and family adjustment.
166 Section IV psychological issues related to site of cancer
Patients diagnosed with CUP frequently believe that further
diagnostic evaluation will increase the likelihood of identifying
the primary tumor and improve their prognosis. Unfortunately,
this is generally not the case and may unnecessarily contribute
to anxiety and psychological distress on the part of the patient.
As noted above, once the more treatable subtypes of CUP are
excluded, identification of the primary is often not important since
other possible diagnoses carry an equally poor prognosis and lim-
ited number of therapeutic options. Therefore, it is crucial for the
oncologist and other physicians involved to carefully communi-
cate to the patient and family the insignificance of identification
of the primary tumor. Futile attempts by both the oncologist and
patient to locate the primary tumor will subject the patient to an
exhaustive and costly series of diagnostic tests that will ultimately
increase the risk of complications and psychological distress.
Consultation by psycho-oncologists may assist the CUP patient
in evaluating the impact of continuing diagnostic workups to
locate the primary tumor and subsequent treatment options
on his or her quality of life. The patients age, family and social
structure, religious beliefs, and value system should be taken into
consideration when evaluating the patient with CUP who is con-
sidering various treatment options, as the following two vignettes
illustrate.
A 35-year-old married father of two young children and a
75-year-old male married with two adult children are both
diagnosed with CUP and are given the opportunity to par-
ticipate in an experimental protocol involving the administra-
tion of a combination chemotherapy modality. Both patients
are informed by researchers of the potential for serious tox-
icity and the limited benefits expected from this treatment.
A psycho-oncologist is requested for consultation with both
patients. During consultation, the 35-year-old patient with
CUP insists on receiving the experimental chemotherapy regi-
men, regardless of the poor prognosis and high toxicity. The
patient states to the clinician that the decision to not partici-
pate in the protocol would represent his giving up and sub-
sequent abandonment of his family. He notes that even if he
dies, he would have gone to his grave knowing that (he) fought
for (his) kids. In contrast, the older patient decides that, given
the low likelihood of receiving benefits from the experimental
chemotherapy, he would rather be in my own home and spend
the time Ihave left with my family.
The above vignettes highlight how similar cases can greatly
differ when issues regarding quality of life are taken into con-
sideration. Psycho-oncologists can be instrumental in help-
ing the patients with CUP evaluate how treatment will impact
their quality of life. Psycho-oncologists can then fit the treat-
ment options into the patients value systems. Even if the con-
tinuation of treatment is thought to be somewhat futile, the role
of the clinician is not to outright discourage further treatment.
Instead, the psycho-oncologist should assist the patient in eval-
uating the impact of further treatment on his or her quality of
life. Discussion of issues regarding quality of life should proceed
in a nonjudgmental and empathetic manner and should respect
the patients wishes. If the patient agrees, family members should
be included in all discussion of treatment options and quality of
life to minimize the chance for miscommunication and to allow
for open exploration of differences of opinion among family
members.
Dealing with Anticipatory Grief
Frequently, patients are aware of the seriousness of their disease
but are hesitant to discuss their approaching death with their fam-
ily because they do not wish to either upset the family or appear
to be giving up the fight against their cancer. Similarly, family
members may try to protect the patient from the burden of their
fears and take the same approach when talking with the patient.
Unfortunately, this approach may lead to isolation of the patient.
The psycho-oncologist can be instrumental in facilitating open
communication between the patient and family. After meeting
with the family and patient separately, the clinician may feel it
appropriate to hold a group discussion with the patient and family
together to discuss the emotional issues of anticipatory grief. Such
an approach may significantly improve the patients quality of life
in the terminal stage of illness and subsequently may contribute to
a healthier period of bereavement for family members.
CONCLUSION
Cancer of unknown primary constitutes a heterogeneous group of
metastatic cancers. With a few notable exceptions, these patients
carry a poor prognosis, and therapy is strictly palliative. Proper
clinical management includes careful evaluation to rule out the
more treatable possible primaries and histologies and to rule
out those specific subgroups of CUP for which specific aggres-
sive therapies have been shown to be efficacious. If clinical and
pathological investigations fail to identify a favorable prognostic
histology or subgroup, the team has an obligation to protect the
patient from unwarranted exhaustive searches for the primary
and to communicate effectively to the patient the lack of utility of
such searches.
Psycho-oncologists must be cognizant of the patients percep-
tion and the potential psychological impact of the term unknown
on CUP patients and their families. Patients may experience many
negative emotions (i.e., anger, frustration, anxiety, depression)
that can interfere with normal adjustment. Given the uncertainty
that constitutes CUP, the psycho-oncologist should act to improve
communication between the patient and physician regarding
CUPs prognosis, treatment, and the insignificance of locating an
unknown primary when other subtypes. Research is needed to
further identify the prevalence and nature of psychosocial issues
in this population, as well as the development of interventions
designed specifically for patients with CUP.
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 SECTION V

Management of Specific
Physical Symptoms

25 Cancer-Related Pain 171 29 Neuropsychological Impact of Cancer

Roma S.Tickoo, R. Garrett Key, and andCancer Treatments 225
William S.Breitbart Tim A.Ahles, Charissa Andreotti,
and Denise D.Correa
26 Nausea and Vomiting 199
Brian Dietrich, Kavitha Ramchandran, 30 Sleep and Cancer 231
and Jamie H.VonRoenn Amy E.Lowery
27 Fatigue 209 31 Weight and Appetite Loss in Cancer 239
Yesne Alici, Julienne E.Bower, and Neil MacDonald
William S.Breitbart
28 Sexual Problems After Cancer 220
Andrew J.Roth, Jeanne Carter, Barbara
Seidel, and Christian J.Nelson
 CHAPTER25
Cancer-Related Pain
Roma S.Tickoo, R. Garrett Key,and
William S.Breitbart
INTRODUCTION
Pain is perhaps among the most prevalent and distressing symp-
toms encountered in patients with cancer, and as the baby boomers
age, the number of people with cancer-related pain will increase.
All patients are at a risk of experiencing pain during their course
of treatment and even after. The number of new cancer patients is
expected to more than double from 1.36million in 2000 to almost
3.0million in 2050.1
Psychiatric and psychological consultation in the
psycho-oncology setting must take into account the important
relationships between pain and psychological and psychiatric
morbidity. Uncontrolled pain can mimic psychiatric disorders, so
mental health clinicians must be knowledgeable about pain and its
appropriate management to recognize cancer-related pain when it
is present. In addition, psychiatrists and psychologists can play a
vital role in the multidisciplinary approach to managing cancer
pain at all stages of disease. This chapter reviews the prevalence
of pain in cancer, pain syndromes, and pain assessment issues,
the recommendations of the National Comprehensive Cancer
Network (NCCN), and pharmacologic and non-pharmacologic
interventions for cancer-related pain. Psychiatric and psychologi-
cal interventions in the treatment of cancer pain have now become
an integral part of a comprehensive approach to pain management
and are highlighted in this chapter.
PREVALENCE OF PAIN IN CANCER
Pain is a common problem for cancer patients, with approximately
70% of patients experiencing severe pain sometime in the course
of their illness.2 It has been suggested that nearly 75% of patients
with advanced cancers have pain, 3 and that 50% of terminally ill
patients are in moderate to severe pain.4 It is also estimated that
25% of cancer patients die in severe pain.5 There is considerable
variability in the prevalence of pain among different types of can-
cer. For example, approximately 5% of leukemia patients experi-
ence pain during the course of their illness, compared to 50%75%
of patients with tumors of the lung, gastrointestinal (GI) tract, or
genitourinary system. Patients with cancers of the bone or cer-
vix have been found to have the highest prevalence of pain, with
as many as 85% of patients experiencing significant pain during
the course of their illness.6 Despite the high prevalence of pain,
however, studies have shown that it is frequently underdiagnosed
and inadequately treated.4 It is important to remember that pain
is frequently only one of several symptoms that occur as part of a
cluster of physical and psychological symptoms.7 With disease
progression, the number of distressing physical and psychological
symptoms increases so that patients with advanced disease report
an average of 11 symptoms.8 Aglobal evaluation of the symptom
burden allows for a more complex understanding of the impact
of pain.9
MULTIDIMENSIONAL CONCEPT OF PAIN
INTERMINAL ILLNESS
Pain, and especially pain in cancer, is not a purely nociceptive
or physical experience, but involves complex aspects of human
functioning, including personality, affect, cognition, behavior,
and social relations.10 The perception of pain can be considered
as a complex integration of somatosensory information, cognitive
processes, affective and emotional state, and cultural or personal
beliefs. Significant study has been devoted to the relationship
between psychic state and pain, leading to the development and
wide acceptance of a biopsychosocial model of pain.11,12 The bio-
psychosocial model is based on the concept of pain as a multi-
faceted experience generated in response to physiological and
psychosocial factors.13 Perhaps the most influential description of
this integration is the gate-control theory of pain, which offers an
elegant neurological explanation of the processing of somatic input
with influence from modifying factors such as experiences, mem-
ories, beliefs, and psychological state to produce perceived pain.14
The interaction of cognitive, emotional, socio-environmental, and
nociceptive aspects of pain shown in Figure 25.1 illustrates the
multidimensional nature of pain in terminal illness and suggests
a model for multimodal intervention15
Psychosocial therapies directed primarily at psychological
variables have profound impacts on nociception, while somatic
therapies have beneficial effects on the psychological aspects of
nociceptive pain. Ideally, such somatic and psychosocial therapies
are used simultaneously in a multidisciplinary approach to pain
management in the cancer patient.16 Effective pain management
in advanced cancer requires a multidisciplinary approach, involv-
ing neurology, neurosurgery, anesthesiology, and rehabilitation
medicine.2,17,18 Psychiatric interventions targeting psychological
172 Section V management of specific physical symptoms
Somatic Therapies
Complete Pain Experience
Nociception
Physiological sources of
Pain
Mood
Anxiety
Pain Meaning
Cognitive Appraisal
Psychosocial
Support
Psychosocial Therapies
Figure25.1 Biopsychosocial model of the complete pain experience.
Nociceptive and psychosocial inputs interact to create the complete pain
experience. Therapies targeting both physiological sources of pain and the
psychosocial factors offer maximal reduction in the overall pain experience.
distress in the treatment of cancer pain have become an integral
part of comprehensive pain management.19,20 Apain treatment
plan must target physiologic sources of somatic pain and also
include attention to the complete pain experience of the person as
a whole, seen in the context of his or her life.
DEFINING PAIN IN CANCER
Various study groups and societies have defined pain differently.
The International Association of Pain has defined pain as an
unpleasant sensory and emotional experience associated with
actual or potential tissue damage or described in terms of such
damage.21 This definition of pain has disconnected the concept
of pain intensity being directly proportional to the objectively
observable tissue damage, emphasizing the subjective nature of
the pain experience. In cancer pain patients, however, there is
typically dramatic evidence of tissue damage that is etiologically
related to the pain complaint. This definition, particularly the
component that emphasizes pain as an emotional experience as
well as a sensory one, clearly demonstrates the need for psychoso-
cial involvement in pain assessment and management.
Pain is often characterized by type on the basis of temporal fac-
tors as well as pathophysiology. It is often sub-typed as acute pain
or chronic pain, based on temporal characteristics. The Diagnostic
and Statistical Manual of Mental Disorders, 4th edition (DSM-IV),
defines chronic pain as persistent pain for six months.22 On the
other hand, the American Society of Anesthesiologists defines
chronic pain as pain of any etiology not directly related to neo-
plastic involvement, extending in duration beyond the expected
temporal boundary of tissue injury and normal healing and
adversely affecting the function or well-being of the individual.23
A well-defined temporal pattern of onset and termination char-
acterizes acute pain. Generally, it is associated with subjective and
objective physical or behavioral signs (e.g., grimacing, guarding,
restlessness) and evidence of hyperactivity of the autonomic ner-
vous system (e.g., rapid pulse, sweating). In contrast, chronic pain
is pain that is experienced for longer than three to six months,
or pain that persists beyond evidence of tissue damage healing.
Patients with chronic pain often do not look as if they are in pain
because adaptation of the autonomic nervous system occurs, and
acute pain behaviors become replaced by depression, disability,
and dysfunction. Chronic cancer pain can lead to significant
changes in mood, personality, quality of life, relational problems,
and functional ability.2 As such, this type of pain requires an
approach that includes treatment of the cause of the pain, as well
as treatment of its psychological and social consequences.24
Foley2 has categorized cancer pain syndromes based on tem-
poral, etiologic, and contextual factors (Box 25.1). This approach
to understanding cancer pain syndromes provides clinicians with
a useful classification when considering therapeutic approaches.
Pain Assessment Tools
Over 100 validated instruments are available. Commonly used
measures include the following:
Brief
Pain Inventory by Cleeland (eight-item questionnaire that
assesses the presence, location, and severity of pain; interfer-
ence caused by pain; and response pain treatment)32
McGill Pain Questionnaire by Melzack (20-item questionnaire
that assesses sensory, affective, and qualitative aspects of pain)33
TheFaces Pain Rating Scale (patients can point to the face that
shows how much pain they are having)34
The Pain Assessment in Advanced Dementia (PAINAD) scale
(useful in patients who are unable to communicate their pain.
Box 25.1 Types of Patients with Cancer-Related Pain
1. Patients with acute cancer-related pain (see also Box 25.2)
a. Associated with diagnosis of cancer
b. Associated with treatment of cancer (surgery, chemother-
apy, or radiation)
Note:It is important to distinguish pain from oncologic emer-
gency versus pain not related to an oncologic emergency.
2. Patients with chronic cancer-related pain (see also Box 25.2)
a. Associated with cancer progression
b. Associated with cancer therapy (surgery, chemotherapy,
or radiation)
3. Patients with pre-existing non-cancer-related pain and
cancer-related pain
4. Patients with past and or current substance abuse, with
cancer-related pain, and patients enrolled in methadone
maintenance programs
5. Patients at the end of life with cancer-related pain.
Adapted from Foley KM. The treatment of cancer pain. N Engl J Med.
1985 Jul 11;313(2):8495.
Box 25.2 Classification of Pain

Pain can be further classified into two major categories based on pathophysiology:nociceptive and neuropathic pain (Box25.1).25
Nociceptive pain derives from the stimulation of intact nociceptors or pain receptors in afferent nerves, and is further subdivided
into somatic pain (involving skin, soft tissue, muscle, and bone) and visceral pain (involving internal organs and hollow viscera).
Nociceptive pain may be well localized (common in somatic pain) or more diffuse (common in visceral pain), and may be sharp,
dull, aching, gnawing, throbbing, constant, or spasmodic, with varying intensity. Neuropathic pain involves stimulation of damaged
or compromised nerve tissue, and may be burning, tingling, stabbing, shooting, with a sensation of electric shock, or allodynia (the
sensation of pain or discomfort produced by a minimal stimulus such as light touch to the skin). The differentiation of pain into one
of these subtypes (particularly nociceptive vs. neuropathic) can help in determining appropriate therapy, as discussed below.

Nociceptive Pain (Somatic and Visceral)

Results from stimulation of intact nociceptors (pain receptors)
Includes somatic pain (involving skin, soft tissue, muscle, bone); visceral pain (involving internal organs, hollow viscera)
Responds to opioid and non-opioid analgesics
Somatic
pain: Arises from cutaneous or deep tissues. Described as aching, stabbing, throbbing, or pressure like pain.
Examples:pain from bony metastasis or postoperative pain.
Visceral
pain:Arises from organ infiltration, compression, or stretching. Described as gnawing, cramping, aching, or sharp,
depending on the location. May be referred to a cutaneous site such as diaphragmatic pain referred to the shoulder.

Neuropathic Pain
May occur from nerve infiltration, compression, or other damage. Described as sharp, tingling, burning, shooting akin to an electric
shock or vise-like. Patients with diabetic or alcoholic neuropathy, herpes, zoster, or cord compression can have neuropathic pain.
Responds to opioid and non-opioid analgesics and adjuvant medications.
Cancer pain is often of mixed etiology or, if purely neuropathic, may be one of several pains experienced by a patient. For these
reasons, opioids are used more frequently in patients with cancer-related neuropathic pain. Standard guidelines for the use of anticon-
vulsants (e.g., pregabalin [Lyrica] and gabapentin [Neurontin]), antidepressants (e.g. duloxetine [Cymbalta] and tricyclic antidepres-
sants), and topical treatments (e.g. capsaicin [Capzasin-P] and lidocaine [Lidoderm]) may be applicable. Choice is dictated not only by
age, drug interactions, and comorbidities, but also by the coexistence of many symptoms in patients with cancer. Treating more than
one symptom with a particular neuropathic pain agent can avoid polypharmacy.26

Pain History and Descriptors

The following are adapted from NCCN Guidelines:27
When did it start?
How long has it been present?
Has it changed in any way?
Is it intermittent or constant/continuous?
Are there any other symptoms?
Does the pain radiate or move anywhere?
What makes the pain worse or better?
What has been tried to treat the pain? Has it helped? Are there side effects? What are the scheduled doses?
Etiology:Underlying causes of the pain must be identified and treated when possible. Emergency problems like spinal cord com-
pression or infection must be treated immediately (see acute cancer-related pain in Table25.1).
Medicalhistory:Pain should be evaluated in the context of the cancer and other significant medical illnesses, as well as current
medications, including over-the-counter and complementary substances.
Psychosocial issues:Evaluate for patient distress, cultural beliefs toward pain, family/caregiver support, psychiatric/substance
abuse history, and patients goal for comfort and function.
Distress:How much distress is the pain causing? Is the pain bearable or unbearable? Does the diffuseness of the distress suggest
emotional suffering rather than nociception? What does the patient think that the pain means (e.g., tumor spread)? What are
cultural, spiritual, or religious concerns about pain?
Support:Who does the patient have for support? Are family members or others available? Is anyone reliably helping to manage
the pain and medications at home? Evaluate for polypharmacy and possible medication interactions/side effects.
(continued)
Box 25.2(Continued)

Psychiatric illness:AnxietyConditioned anticipatory anxiety may begin before dressing changes or painful walking. Patients
may seek analgesics to treat anxiety or insomnia rather than pain. DepressionWhen elderly patients have clinical depression,
pain feels worse. They are more likely to have somatic complaints rather than mood complaints. Assess history of depression and
current depressive symptoms (sleep disturbance; loss of interest; guilt/hopelessness/helplessness; low energy; concentration dif-
ficulties; appetite changes; psychomotor retardation; suicidal ideation). Treat the depressive syndrome as appropriate. Substance
AbusePatients with psychiatric or opiate abuse histories may require higher doses due to tolerance. Addictive behavior:Use
caution in patients with a history of drug dependence or alcoholism. Use initial screening tool ORT (Opioid Risk Tool):a higher
risk score correlates with an increased likelihood of drug abuse.28 Partnering with an addiction specialist and opioid contracts
are recommended in such situations. Making sure that these patients never run out of their analgesics may work as a preventive
strategy in avoiding pain crisis or aberrant drug-seeking behavior.
Goals and expectations:Discuss patients goals and expectations regarding pain management in the context of level of comfort
and function. Include family/caregivers. Provide after- and off-hours backup support to manage severe pain over the phone.
Physical examination with review of appropriate laboratory and imaging studies.

Risk Factors for Under-Treatment

The cognitively impaired, the elderly, women,29 and minorities
Patients underreporting their pain
Language/communication and cultural barriers
History of substance abuse, psychiatric illness, neuropathic pain
Fear by physician of complications/overdosing patient/lack of training in pain management
Fear by patient to become an addict, or be labeled as one30

Table25.1 Overview of Common Cancer-Related Pain Syndromes for the Psycho-Oncologist

Acute Cancer-Related Pain Syndromes

Associated with the cancer itself
Hemorrhage into a tumor, e.g. hepatocellular
carcinoma with severe right upper quadrant
pain, potentially life-threatening
Pathologic fracture:occurs in a pre-existing
bone lesion:sudden onset of back or limb pain
Obstruction or perforation of a hollow
viscus:bile duct, ureter, bowel by intraabdominal Acute and transient brachial plexopathy can occur/
tumor or retroperitoneal fibrosis. May need
urgent decompression, stenting or surgery.
Associated with the treatment of cancer
Oral mucositis
High-dose chemotherapy induced in approx 70%
of hematopoietic stem cell transplant patients;
non-infectious in nature
Bacterial or fungal superinfection of mucosal ulcers in
the setting of graft-versus-host-disease may be more
severe and prolonged.
Radiation therapy induced in nearly all patients
receiving radion to head and neck; usually 23 weeks
after starting radiation
Chemotherapy-induced neuropathy
Common agents:vincristine, cisplatin, paclitaxel,
oxaliplatin, thalidomide and bortezomib
Mostly polyneuropathy and less commonly
mononeuropathy
Pain is usually insidious although can be acute in case
of oxaliplatin-induced pharyngolaryngeal spasm
Radiation plexopathy
brachial neuritis or plexitis characterized by pain,
paresthesias, and weakness in the shoulder, arm, and hand
Radiation enteritis and proctitis
Those who are undergoing abdominal radiation may
experience cramping nausea and vomiting (enteritis).
Tenesmus with diarrhea, mucous discharge, and
bleeding (proctitis)
(continued)
Table25.1(Continued)

Chronic Cancer-Related Pain Syndromes

Tumor-related Somatic pain Tumor-related visceral pain Tumor-related neuropathic pain

Multifocal bone pain Visceral pain is caused by obstruction of any hollow Leptomeningeal metastasis
Most prevalent cause of chronic pain in viscus or injury to another pain-sensitive visceral Common cancers that can infiltrate leptomeninges
cancer patients structure such as visceral pleura, hepatic capsule, or are lung and breast cancer, lymphoma, and
Lung, breast, and prostate are common
peritoneum; commonly seen in gastrointestinal and leukemia.
gynecologic malignancies.
primary cancers that cause skeletal May present as headaches
metastasis. Hepatic distension pain Nonspecific back pain or pain in a radicular
Pain may occur as direct bone invasion, Midline retroperitoneal syndrome distribution
secondary pathologic fracture, or damage to Chronic intestinal obstruction Motor or sensory disturbance consistent with a
adjacent structures. Peritoneal carcinomatosis cranial neuropathy may occur
Local external beam radiation is well Malignant perineal pain Seizures, cognitive impairment, hemiparesis or
recognized and effective modality for painful hemi-sensory syndromes, spinal cord syndromes
Adrenal pain syndrome
bony metastasis. may be present.
Ureteral obstruction
Hematologic malignancies can rarely produce MRI is recommended.
painful bone marrow expansion, presumably
by nests of rapidly growing marrow.
Vertebral pain syndromes:most common
sites of metastasis are vertebrae.
Epidural Spinal; Cord Compression (ESCC):
This is a common complication of vertebral
metastasis that extends posteriorly into the
epidural space.
Almost always presents initially as back or
neck pain
Pain usually precedes neurologic dysfunction
by weeks or months. If severe pain (acute
or acute on chronic) is the sole complaint
it is crucial to recognize impending cord
compression. Effective treatment needs to be
started immediately to prevent or retard the
progression of neurologic impairment.
MRI is the preferred approach to evaluate the
epidural space.
Glucocorticoids must be immediately
initiated to temporarily improve pain and
neurologic functioning while radiation or
surgery is being arranged.
Soft tissue/Myofascial pain Cranial neuralgias
Sarcomas can arise in muscles and therefore Radiculopathies
muscle cramps associated with radiculopathy Plexopathies
or plexopathy may be present. Peripheral mononeuropathies
Somatic chest wall pain in lung cancer and
Paraneoplastic syndromes
mesothelioma can occur due to direct tumor
infiltration of the ribs, intercostal spaces, or
parietal pleura.
Pain is worsened by deep inspiration.
Amalignant mononeuropathy may
present as mixed nociceptive somatic and
neuropathic pain.
Paraneoplastic syndromes may be associated
with pain (hypercalcemia, hyponatremia,
hypertrophic osteoarthropathy).
Adapted from Foley KM. The treatment of cancer pain. N Engl J Med. 1985 Jul 11;313(2):84-95. Overview of cancer pain syndromes. 2014. http://www.uptodate.com/contents/
search?search=cancer+pain. Accessed April 28, 2014.
176 Section V management of specific physical symptoms
Box 25.3 Chronic Cancer Pain Related to Anti-neoplastic
Therapies
Chemotherapy related neuropathy
Bone complications and glucocorticoids
Post-surgical pain syndromes
Phantom limb sensation and or pain
Post-radiation pain syndromes
Plexopathies
Myelopathies
Adapted from Overview of cancer pain syndromes. 2014.
http://www.uptodate.com/contents/search?search=cancer+pain.
Accessed April 28, 2014.
Healthcare workers can observe these five specific indica-
tors: breathing, vocalization, facial expression, body language,
and consolability).35
ASSESSMENT OF CANCER-RELATED PAIN
The initial step in cancer pain management is to believe in the
patients report and a comprehensive assessment of pain symp-
toms. An important element in assessment of pain is the concept
that assessment is continuous and needs to be repeated over the
course of pain treatment. There are essentially four aspects of
pain experience in cancer that require ongoing evaluation:pain
intensity, pain relief, pain-related functional interference (e.g.,
mood state, general, and specific activities), and monitoring of
intervention effects (e.g., analgesic drug side effects, abuse). 36
Box 25.1 outlines the principles of pain assessment as described
by Foley based on the patient presentation.2 The Memorial Pain
Assessment Card (MPAC)37 is also a helpful clinical tool that
allows patients to report their pain experience. The MPAC con-
sists of visual analog scales that measure pain intensity, pain
relief, and mood. Patients can complete the MPAC in less than
30 seconds. Patients reports of pain intensity, pain relief, and
present mood state provide the essential information required to
help guide their pain management. The Brief Pain Inventory38 is
another pain assessment tool that has useful clinical and research
applications.
Successful management of cancer-related pain begins with
detailed attention to pain history and characterization of pain,
as reported by the patient and/or caregiver. It is important to
understand possible pain syndrome and the inferred pathophys-
iology in order to choose the management modalities (pharma-
cologic, non-pharmacologic, or interventional). The evaluation
of the impact of pain and the role it plays in the overall suffer-
ing of the cancer patient is critical for comprehensive assessment
and effective management. Additionally, there is mounting evi-
dence that survival of cancer patients is linked to effective pain
control. 39
Definitions
Opioid nave27 describes patients who are not chronically 12. Integrative medicine interventions must be offered and
receiving opioid analgesics on a daily basis and therefore have
not developed significant tolerance. The FDA identifies toler-
ance as receiving at least 60 mg of morphine daily, at least 30 mg
of oral oxycodone daily, or at least 8 mg of oral hydromorphone
(Dilaudid) daily, or an equianalgesic dose of another opioid for a
week or longer.
Opioid tolerant 27 includes patients who are chronically
receiving an opioid analgesic on a daily basis.
Rescue dose or demand dose includes patients with chronic
persistent pain that is controlled on stable doses of long-acting
opioid; these patients should have provision of short-acting
medications to manage breakthrough or transient exacerba-
tions in pain. The rescue dose is usually equivalent to 10%20%
of the total daily dose and can be given every hour as needed. In
usual practice this is offered every three to four hours as needed.
Universal Screening
Screening includes the following (partly adapted from NCCN
2014 Adult Cancer Pain Guidelines):27
1. All cancer patients must be screened for pain at each contact,
and comprehensive assessment must be performed if pain is
present.
2. Goals of pain management are improved comfort and
function.
3. Comprehensive management of pain is needed, as most
patients may have multiple pathophysiologies for their pain.
4. Analgesic therapy is done in conjunction with management
of multiple symptoms or symptom clusters and the pharma-
cological therapies that patients with cancer are generally
prescribed.
5. Pain intensity must be quantified, and quality must be char-
acterized by the patient whenever possible.
6. Reassessment of pain must be performed at specific intervals
to ensure that the analgesic therapy selected is having the
maximum benefits with few adverse effects.
7. Persistent cancer pain often requires treatment with regularly
scheduled analgesics (commonly referred to as long-acting
medication), and supplemental doses of analgesics are often
required to manage breakthrough pain (commonly referred
to as the rescue dose).
8. A multidisciplinary team approach may be needed, and
this is where community referral networks could be devel-
oped among local practice groups or with the community
hospitals.
9. Psycho-oncology liaison consultative support during inpa-
tient hospitalizations, as well as on ambulatory basis, is pro-
vided as part of standard of care at our institution. When
feasible, community referrals must be encouraged for contin-
ued support closer to patients home.
10. Specific educational material must be provided to the patient
and family/caregiver.
11. The multidimensional impact of suffering on patients and
their families must be considered and addressed in a cultur-
ally sensitive and respectful manner.
optimized.

13. Psychosocial support by hospice teams at home and inpa-
tient facilities are another means of addressing distress from
cancer-related pain, not only of the patient but the care giver
as well.
The clinician needs to be familiar with the common cancer pain
syndromes (e.g., epidural disease, plexopathies) in order to facili-
tate identification of the cause so that treatment can be initiated
early on and morbidity (e.g., paraplegia and incontinence due to
cord compression) prevented or minimized. The physical exam
should focus on pathologic conditions that are expected to cause
pain. The painful area should be carefully examined to determine
if palpation or manipulation of the site produces pain. Common
sites of pain referral (e.g., shoulder pain from subdiaphragmatic
lesions) should be kept in mind when performing the examina-
tion. The neurological component of the physical examination is
emphasized so that syndromes such as vertebral collapse or spinal
cord compression are not overlooked.41 Given the clinical impli-
cations, at least the basic knowledge and the capability to diagnose
such syndromes are essential for every practitioner, even at the
community level.
Appropriate diagnostic tests should be performed to deter-
mine the cause of pain and extent of disease, and to correlate
this information with the findings on the history and physi-
cal exam to ensure that the appropriate areas of the body have
been imaged and the abnormalities found do in fact explain the
patients pain.
Box 25.4 Temporal Relationships of Acute and Chronic Pain
a. Temporal relationships
i.Acute:
1.Defined by an overt pain behaviors (moaning, gri-
macing, and splinting)
ii.Chronic:
1. Persistence for 3months or more
2.Pattern of recurrence at intervals over months or
years, or
3.Association with a chronic pathological process
iii. Breakthrough pain:
1.Transitory exacerbations of severe pain, over a base-
line of moderate pain.
2.Common in both acute and chronic pain states
3.May be precipitated by volitional actions (move-
ment, micturition, cough, or defecation) or by
non-volitional events (bowel distension)
4.Spontaneous fluctuations in pain intensity may occur
Adapted from NCCN. Adult Cancer Pain Guidelines, version 2.2014.
http://www.nccn.org/professionals/physician_gls/f_guidelines.
asp#supportive2014; Cherny N.Assessment of cancer pain in Wall
and Melzacks textbook of pain. In:Koltzenburg MA, ed. Assessment
of Cancer Pain, 5th ed. London:Elsevier Churchil Living Stone; 2006.
Chapter25 cancer-related pain 177
MANAGEMENT OF CANCER-RELATED PAIN
Initiating Treatment
The route of administration of opioid (oral versus intravenous)
is based upon what is best suited for a patients ongoing anal-
gesic needs.
Screen for pain at each visit with the one instrument and the
010 scale.
If the pain score is greater than 0, evaluate with the comprehen-
sive pain assessment.
Goal is to treat/diagnose underlying causes of the pain while
providing analgesia. Individualize treatment to patients wishes,
with the goal of maximizing function and quality of life.
Initiate pain medications based on opioid tolerance and inten-
sity of the pain.
Management of Opioid Nave Patients
Mild pain (score 13): Consider NSAID or acetaminophen
(Tylenol) without opioids if patient is not on analgesics. If pain
not relieved, consider slow titration of short-acting opioids.
Moderate Pain (score 46): Administer 510 mg of oral
immediate-release morphine sulfate or equivalent and reassess
in four hours. If the pain score has decreased by less than 50%,
increase the dose by 25%50% and repeat assessment in four hours.
If the pain score decreased by at least 50%, this is the effective
four-hour dose. Give the effective dose every four hours as needed.
Severe pain (score 710): Rapidly titrate short-acting opioids.
Administer 510 mg of oral immediate-release morphine sul-
fate and reassess after 60 minutes. If pain is unchanged, double
the dose and repeat until pain score decreases by at least 50%;
re-evaluate frequently. If pain score decreases by less than 50%,
repeat the same dose and reassess. After pain score is decreased
by at least 50%, calculate the total amount given over four hours
for the effective four-hour dose.
Management of Opioid Tolerant Patients
If experiencing breakthrough pain of intensity greater than or
equal to 4, or a pain intensity less than 4 but goals of pain control
are not being met. Continue long-acting,and
Calculate the previous 24-hour total oral or IV opioid requirement,
and take 10%20% of that for calculation of new rescue dose.
Efficacy and adverse effects should be assessed every 60 minutes
for oral opioids, and every 15 minutes for intravenous opioids.
On reassessment, if pain score remains unchanged or increased,
administer 50%100% of previous rescue dose. Repeat at
60-minute intervals (for oral meds) or every 15 minutes (for
IV meds). If pain score remains unchanged upon reassessment
after two to three cycles of the opioid, then consider changing
route of administration or alternate strategies.
Once pain score decreases to < 4, the current effective dose of
either oral or intravenous can be administered as needed over
initial 24 hours.
Ultimately, you will need to increase both around-the-clock and
as-needed doses based on the intensity of the pain.
178 Section V management of specific physical symptoms

PSYCHOLOGICAL FACTORS IN THE
CANCER PAIN EXPERIENCE
Among the many stressors faced by patients with cancer are
dependency, disability, and fear of painful death. Such fears are
universal; however, the level of psychological distress is variable
and depends on medical factors, social support, coping capacities,
and personality.
Cancer-related pain has profound effects on psychological dis-
tress; and psychological factors such as anxiety, depression, and
the meaning of pain for the patient can intensify the cancer pain
experience.11,12 Daut and Cleeland44 demonstrated that cancer
patients who attribute a new pain to an unrelated benign cause
report less interference with their activity and quality of life than
patients who believe their pain represents progression of disease.
Spiegel and Bloom24 found that women with metastatic breast
cancer experience more intense pain if they believe their pain
represents spread of their cancer and if they are depressed. Belief
about the meaning of pain and the presence of a mood distur-
bance were better predictors of pain level than number or site of
metastases.
In a secondary analysis of cross-sectional self-reported and clin-
ical data from 2768 follow-up patients attending selected clinics
of a regional National Health Service cancer center in the United
Kingdom, pain was measured using the pain severity scale of the
European Organization for Research and Treatment of Cancer
Quality of Life Questionnaire, emotional distress was measured
by the Hospital Anxiety and Depression Scale, and demographic
and clinical data were taken from medical records. It was found
that 54% of patients reported pain at least a little in the previous
week and 18% at least quite a bit clinically significant pain (CSP).
The strongest independent associations of clinically significant

Table25.2 Opioid Characteristics and Equianalgesic Conversion in Chronic Pain

Analgesic Equianalgesic Dose (mg) Analgesic Onset Duration (hrs) Plasma Half-life Comments
Route (hrs) (hrs)
Morphine PO IM, IV, SC 3060*10 11 46 23 Standard of comparison for the narcotic
1 36 analgesics. 30 mg for repeat around-the-clock
dosing; 60 mg for single dose or intermittent
dosing
Morphine PO 90120 1 812 Now available in long-acting sustained-release
forms
Oxycodone PO 2030 11 36 23 In combination with aspirin or acetaminophen,
PO 2040 812 23 it is considered a weaker opioid; as a single
agent, it is comparable to the strong opioids, like
morphine. Available in immediate-release and
sustained-release preparation
Hydromorphone PO IM, IV 7.5 1 34 23 Short half-life; ideal for elderly patients. Comes in
1.5. 34 23 suppository and injectable forms

Methadone PO IM, IV 20 1 48 1530 Long half-life; tends to accumulate with initial

10 1 1530 dosing, requires careful titration. Good oral
potency.
Levorphanol PO 4 1 36 1216 Long half-life; requires careful dose titration in
IM 2 1 34 1216 first week. Note that analgesic duration is only
4 hrs.
Meperidine PO 300 1 36 34 Active toxic metabolite, or meperidine, tends
IM 75 1 34 34 to accumulate (plasma half-life is 1216 hrs),
especially with renal impairment and in elderly
patients, causing delirium, myoclonus, and
seizures.
Fentanyl TD 0.101 1218 4872 2022 Transdermal patch is convenient, bypassing GI
Transdermal IV analgesia until depot is formed. Not suitable for
System rapid titration.
Oxymorphone PO 10 mg 1 46 8 Long half-life but low oral bioavailability Rectal
IV, IM, SC administration is an alternate route for patients
unable to take oral medications. More frequent
dosing may be required.

Abbreviations:GI=gastrointestinal tract; PO=per oral; IM=intramuscular; IV=intravenous; SC=subcutaneous; TD=transdermal.

Tapentadol is a new opioid that binds to the opioid receptor that inhibits norepinephrine reuptake.
Adapted from NCCN. Adult Cancer Pain Guidelinesm version 2.2014. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#supportive2014.
 Chapter25 cancer-related pain 179

Table25.3 Medications for Neuropathic Pain

Medication Starting Dosage Titration Maximum Duration of Major Side Effects Precautions Other Benefits
Dosage Adequate Trial
Nortriptyline 25 mg at bedtime Increase by 150 mg daily 6-8 weeks Sedation, dry Cardiac disease, Improvement
(Pamelor) 25mg daily with > 2 week mouth, blurred glaucoma, suicide of depression,
every 37days, at maximum vision, weight gain, risk, seizure disorder, insomnia, low cost.
Desipramine
as tolerated tolerated dosage urinary retention, concomitant use of *Least
(Norpramin) until pain relief orthostatic tramadol anticholinergic
hypotension effect, orthostatic
hypotension, and
sedation.43
Duloxetine 30 mg once Increase to 60 mg twice 4 weeks Nausea Hepatic dysfunction, Improvement of
(Cymbalta) daily 60mg once daily renal insufficiency, depression
daily after alcohol abuse,
1week concurrent use with
tramadol
Venlafaxine 37.5 mg once or Increase by 225 mg daily 46 weeks Nausea Concurrent use of Improvement of
(Effexor) twice daily 75mg each tramadol, cardiac depression
week, as disease, withdrawal
tolerated until syndrome if abrupt
pain relief discontinuation
Gabapentin 100300 mg QHS Increase by 3600 mg daily 38 weeks for Sedation, dizziness, Renal insufficiency Improvement of
(Neurontin) or 100300 mg 100300 (1200 mg TID), titration PLUS peripheral edema sleep disturbance,
TID mg TID very reduce if renal 2 weeks at anxiety
17days, as impairment maximum dose
tolerated, until
pain relief
Pregabalin (Lyrica) 50 mg TID or Increase to 300 600 mg daily 4 weeks Sedation, dizziness, Renal insufficiency Improvement of
75mg BID mg daily after (200 mg TID peripheral edema sleep disturbance,
37days, then or 300 mg anxiety
by 150 mg/day BID), reduce if
every 37days, impaired renal
as tolerated, function
until pain relief
5% Lidocaine Maximum of None needed Maximum of 3 weeks Local erythema, rash None No systemic side
Patch (Lidoderm) 3 patches daily 3 patches daily effects
for maximum of for maximum
12hours of 12 hours

pain were active disease (odds ratio [OR] 1.95, 95% CI 1.52.5)
and emotional distress (OR 4.8, 95% CI 46). The authors con-
cluded that CSP was surprisingly common in outpatients of spe-
cialist cancer services, strongly and independently associated with
emotional distress, and suggested that pain and distress should be
considered together.45
In an attempt to define the potential relationships between
cancer pain and psychosocial variables, Padilla et al.46 found
that there were pain-related quality-of-life variables in three
domains:physical well-being; psychological well-being (consist-
ing of affective factors, cognitive factors, spiritual factors, com-
munication skills, coping skills, and meaning attributed to pain
or cancer); and interpersonal well-being (focusing on social sup-
port or role functioning). The perception of marked impairment
in activities of daily living has been shown to be associated with
increased pain intensity.47 Measures of emotional disturbance
have been reported to be predictors of pain in the late stages of
cancer, and cancer patients with less anxiety and depression
are less likely to report pain.48 In a prospective study of cancer
patients, it was found that maladaptive coping strategies, lower
levels of self-efficacy, and distress specific to treatment or disease
progression were modest but significant predictors of reports of
pain intensity.49
Psychological variables, such as the amount of control people
believe they have over pain, emotional associations and memo-
ries of pain, fear of death, depression, anxiety, and hopelessness,
contribute to the experience of pain and can increase suffering.
Singer and colleagues50 reported an association among the fre-
quency of multiple pains, increased disability, and higher levels
of depression.
Persistent cancer pain may be unjustifiably attributed to a psy-
chological cause when it does not respond to treatment. Patients
who report their pain as severe are sometimes dismissed as
having a large psychological component to their pain. Grossman
180 Section V management of specific physical symptoms

etal.51 found that a high degree of concordance between patient Table25.5 Depression and Anxiety Prevalence in Palliative Care and
and caregiver ratings of patient pain intensity at low and moderate Oncology/Hematology Settings
levels, but not when patients reported higher scores. In their study,
clinician agreement with patient pain reports lost concordance DSM IV-TR Prevalence in Prevalence in
when patients reported scores of 7 or higher on a visual analog rat- Diagnosis Palliative Care Hematology/Oncology
ing scale of 0 to 10. This underscores the importance of accepting (95% CI) (95% CI)
patient reports of pain and even discussing differences in provider Depression (DSM or 16.5% (13.120.3) 16.3% (13.419.5)
impression of the patients pain in order to reach a mutual under- ICD major depression)
standing. Apsychiatric consultant must ensure that an accurate
Adjustment disorder 15.4% (10.121.6) 19.4% (14.524.8)
pain assessment has been done and must evaluate the adequacy of
the analgesic management. Anxiety disorders 9.8% (6.813.2) 10.3% (5.117.0)
Psychological variables are too frequently proposed to explain Adapted from Mitchell AJ, Chan M, Bhatti H, etal. Prevalence of depression, anxiety,
continuing pain or lack of response to pain treatment when, on and adjustment disorder in oncological, haematological, and palliative-care settings:a
close examination, medical causes of pain have not been com- meta-analysis of 94 interview-based studies. Lancet Oncol. 2011 Feb;12(2):160174.
pletely addressed. Pain can overwhelm a persons ability to
adaptively cope, resulting in behavior suggestive of psychiatric
disorders, which disappears once the pain is relieved.52,53 pain primarily included adjustment disorder with depressed
or anxious mood (69%) and major depression (15%). This find-
ing of increased frequency of psychiatric disturbance in cancer
CANCER-RELATED PAIN AND pain patients also has been reported by other investigators. 55
PSYCHIATRICDISORDERS A recent meta-analysis conducted by Mitchell and colleagues
The relationship between psychiatric disorders, pain, and can- reviewed 94 studies and found psychiatric disorders occurring
cer is complex, and estimates of prevalence remain broad despite in 30%40% of cancer patients in a hospital setting. 56 There was
extensive study on the subject. There is consensus around the no effect seen for age or sex on the prevalence of disorders, and
fact that both pain patients and cancer patients exhibit increased the data were insufficient to support conclusions about dura-
rates of depression and anxiety above what is found in the general tion of illness or cancer type. Asummary of their results is pre-
population. sented in (Table 25.5). Variable rates of depression have been
In the Psychosocial Collaborative Oncology Group Study seen related to cancer type in other analyses, with particularly
on the prevalence of psychiatric disorders in cancer patients, elevated prevalence in oropharyngeal (22%57%), pancreatic
summarized in Table 25.4, 39% of the patients who received a (33%50%), lung (11%44%), and breast (1.5%46%) cancers. 57
psychiatric diagnosis reported significant pain, whereas only Stiefel etal.42 described the psychiatric complications seen in
19% of patients without a psychiatric diagnosis had signifi- cancer patients undergoing treatment for epidural spinal cord
cant pain. 54 The psychiatric disorders in cancer patients with compression (ESCC), which may include high-dose dexametha-
sone. Twenty-two percent of patients with ESCC had a major
depressive syndrome diagnosed, as compared to 4% in the com-
Table25.4 Rates of DSM-III Psychiatric Disorders and Prevalence of parison group. Also, delirium was much more common in the
Pain Observed in 215 Cancer Patients From Three Cancer Centers dexamethasone-treated patients with ESCC, with 24% diag-
nosed with delirium during the course of treatment, as com-
Diagnostic Category Number in Percentage Number With pared to only 10% in the comparison group.
Diagnostic of Psychiatric Significant In advanced disease, there is a high prevalence of depression
Class Diagnoses Paina and delirium.58 Approximately 25% of all cancer patients experi-
ence severe depressive symptoms, with the prevalence increasing
Adjustment disorders 69 32 68
to 77% in those with advanced illness. The prevalence of delirium
Major affective disorders 13 6 13 among cancer patients requiring psychiatric consultation has
Organic mental disorders 8 4 8 been found to range from 25% to 40%, and to be as high as 85%
during the terminal stages of illness.59 Opioid analgesics, which
Personality disorders 7 3 7
are often necessary in late stages of disease, and many other drugs
Anxiety disorders 4 2 4 can cause confusional states, particularly in the elderly and ter-
Total with psychiatric 101 47 39 (39%) minally ill.7
diagnosis
Total with no psychiatric
diagnosis
114 53 21 (19%)
CANCER-RELATED PAIN, SUICIDE,
Total patient population 215 100 60 (28%)
ANDVIOLENCE
Suicide risk has been the subject of debate, and much uncer-
a Score greater than 50mm on a 100mm VAS pain severity.
tainty around absolute risk exists. There is reasonable consen-
Abbreviation:VAS=visual analog scale sus that suicide risk is elevated in cancer patients and highest
Adapted from OConnor AB, Dworkin RH. Treatment of neuropathic pain:an overview of during the first year after diagnosis and the terminal phase of
recent guidelines. Am J Med. 2009 Oct;122(10 Suppl):S2232.
 Chapter25 cancer-related pain 181

illness.60 Although relatively few cancer patients commit suicide, reported by abused women was 10 times higher than the general
they are at increased risk when compared to the general popula- population. Higher danger scores and risk for re-victimization
tion.61,62 Suicidal ideation and suicide risk have been linked to were reported. Increased awareness of the potential connection
uncontrolled pain in cancer patients.63,64 The majority of suicides between IPV and cancer is needed, and evidence-based strate-
in cancer patients are in the context of severe pain, often inad- gies that promote IPV screening in the oncology setting should
equately controlled.65 Patients with advanced illness are at high- be developed.70
est risk and are the most likely to have the complications of pain,
depression, delirium, and functional deficits. An analysis of five
suicides in palliative home care programs in Italy found common BARRIERS TO CANCER PAIN MANAGEMENT
risk factors to be uncontrolled physical symptoms, including The following barriers to pain management are adapted from
pain, previous psychiatric history, prior suicide attempts, isola- National Cancer Institutes PDQ (Physician Data Query).71,72
tion, and poor social support.60 Areview of the psychiatric con- Problems related to healthcare professionals:
sultations at Memorial Sloan Kettering Cancer Center (MSKCC)
Inadequate knowledge of pain management
found that one in three cancer patients evaluated for suicidality
was diagnosed with major depression, approximately 20% were Poor assessment of pain
diagnosed with delirium, and over 50% met criteria for adjust- Concern about regulation of controlled substances
ment disorder.63
Fear of patient addiction
Cancer is perceived to be a particularly painful disease, which
may promote consideration of suicide as a way to avoid intol- Concern about side effects of analgesics
erable suffering. In one study, 69% of respondents opined that
Concern about patients becoming tolerant to analgesics.
cancer-related pain could cause a person to consider suicide.61
Thoughts of suicide are not uncommon in patients with pain Problems related to patients:
and cancer, particularly in advanced stages, and can represent Reluctance to report pain
a patients way of maintaining a sense of control and defend-
Concern about distracting physicians from treatment of
ing against the fear of unavoidable, uncontrolled suffering.
Data suggest that earnest suicidal ideation is relatively infre- underlying disease
quent in cancer and is limited to those who are significantly Fear that pain means disease is worse
depressed.63,6668 The role of cancer pain in desire for hastened Lack of knowledge about principles of basic pain manage-
death is complex. Severity of clinical depression and hopeless- ment (concern about not being a good patient)
ness are associated with suicidal ideation and predictive of
Reluctance to take pain medications
desire for hastened death. Social supports and physical func-
tion add significant but smaller contributions. 69 Interestingly, Fear of addiction or of being thought of as an addict (this fear
suicidal ideation was not directly related to pain intensity but may be more pronounced in minority patients)
was strongly related to the degree of depression and mood dis-
Worries about unmanageable side effects (such as constipa-
turbance in one study population with cancer pain. Pain makes
tion, nausea, or clouding of thought)
patients more vulnerable to suicide but associated psychological
distress, hopelessness, delirium, and depression are larger fac- Concern about becoming tolerant to pain medications.
tors in the overall increase in suicide risk.65 Poor adherence to the prescribed analgesic regimen
Linking Cancer and Intimate Partner Violence Financial barriers.
A link exists between cancer and violence that is worth high- Problems related to the healthcare system:
lighting. Millions of women in the United States experience Low priority given to cancer pain treatment
physical abuse because of intimate partner violence (IPV) that
Inadequate reimbursement for pain assessment and treatment
results in injuries, social and family dysfunction, mental health
disorders, chronic pain and illness, and death. Cancer causes The most appropriate treatment may not be reimbursed or
a quarter of the deaths of women in the United States. When may be too costly for patients and families.
IPV and a cancer diagnosis intersect, a special population of Restrictive regulation of controlled substances
women with unique needs is created. In a study by Cesario to
determine the rates of IPV and the types of cancer reported Problems of availability of treatment or access to it
by women seeking services for IPV, safety, community agency Opioids unavailable in the patients pharmacy
use, severity of violence, danger, psychological distress,
Unaffordable medication.
post-traumatic stress disorder, self-efficacy, social support,
pain, and marginality were assessed. In a study by Cesario The US Food and Drug Administration Amendments Act of 2007
and colleagues, 300 abused women were interviewed regard- requires manufacturers to provide risk evaluation and mitigation
ing their health, safety, and functioning. Of the 300 women, strategies (REMS)73 for selected drugs to ensure that benefits out-
eight reported receiving a cancer diagnosis, and most of those weigh risks. Amajor component of REMS requires prescribers to
women had cervical cancer. The prevalence of cervical cancer obtain training so that these drugs can be safely used.
182 Section V management of specific physical symptoms
Recipe for Successful Pain Management in Cancer Care
Flexibility is the key to managing cancer pain. As patients vary in
diagnosis, stage of disease, responses to pain and interventions,
and personal preferences, so must pain management. The recom-
mended clinical approach outlined below emphasizes a focus on
patient involvement.
Monitoring and reassessment: Ask about pain regularly.
Assess pain and associated symptoms systematically using
brief assessment tools. Assessment should include discussion
about common symptoms experienced by cancer patients
and how each symptom will be treated. Believe patient and
family reports of pain and what relieves the pain. Choose
pain-control options appropriate for the patient, family, and
setting.
Facilitate access to analgesia:Deliver interventions in a timely,
logical, coordinated fashion.
Education and instructions: Empower patients and their
families. Enable patients to control their course as much as
possible. At each contact, educate by verbal and or written
instruction tools. Encourage patients to be active participants
in their care.
Effective pain management is best achieved by a team approach
involving patients, their families, and healthcare providers. The
clinicianshould
Manage side effects: Initiate prophylactic anticonstipation
measures in all patients (except those with diarrhea) before or
during opiate administration. Discuss pain and its manage-
ment with patients and their families.
Reassure
patients who are reluctant to report pain that there
are many safe and effective ways to relieve pain.
Consider the cost of proposed drugs and technologies.
Sharedocumentation of pain assessment and management
with other clinicians treating the patient.
Know state/local regulations for controlled substances:Educate
and ensure safe opioid use, storage, and disposal. Inform
patients about prescription monitoring programs if applica-
ble to their location.
Inadequate management of cancer pain is often a result of the
inability to properly assess pain in all its dimensions.16 All too
frequently, psychological variables are proposed to explain con-
tinued pain or lack of response to therapy, when in fact medi-
cal factors have not been adequately appreciated. Other causes
of inadequate pain management include lack of knowledge of
current pharmacotherapeutic or psychotherapeutic approaches;
focus on prolonging life rather than alleviating suffering; lack of
communication between doctor and patient; limited expectations
of patients regarding pain relief; limited communication capac-
ity in patients impaired by organic mental disorders; unavail-
ability of opioids; doctors fear of causing respiratory depression;
and, most important, doctors fear of amplifying addiction and
substance abuse. In cancer, several additional factors have been
noted to predict the under-management of pain, including a dis-
crepancy between physician and patient in judging the severity
of pain; the presence of pain that physicians do not attribute to
cancer; better performance status; age of 70years or more; and
female sex.74
Fear of Addiction and Inadequate Cancer Pain Management
Fear of addiction affects both patient compliance and physician
management of narcotic analgesics, leading to under-medication
of pain in cancer patients.75 Studies of the patterns of chronic
narcotic analgesic use in patients with cancer have demon-
strated that, although tolerance and physical dependence com-
monly occur, addiction (psychological dependence) is rare and
almost never occurs in individuals without a history of drug
abuse before cancer illness.75 Studies of the patterns of chronic
narcotic analgesic use in patients with cancer have demon-
strated that, although tolerance and physical dependence com-
monly occur, addiction (psychological dependence) is rare and
almost never occurs in individuals without a history of drug
abuse before cancer illness76 reported on their experience in
managing cancer pain in such a population. Of 468 inpatient
cancer-pain consultations, only eight patients (1.7%) had a his-
tory of intravenous (IV) drug abuse, but none had been actively
abusing drugs in the previous year. All eight of these patients
had inadequate pain control, and more than half were intention-
ally under-medicated because of staff concern that drug abuse
was active or would recur. Adequate pain control was ultimately
achieved in these patients by using appropriate analgesic dosages
and intensive staff education.
Concerns over Respiratory Depression and Inadequate
CancerPain Management
The risk of inducing respiratory depression is too often overes-
timated and can limit appropriate use of narcotic analgesics for
pain and symptom control. Bruera etal.77 demonstrated that, in a
population of terminally ill cancer patients with respiratory fail-
ure and dyspnea, the administration of subcutaneous morphine
actually improved dyspnea without causing a significant deterio-
ration in respiratory function.
Lack of Concordance Between Patient and Caregiver
Assessment of Pain Intensity
The adequacy of cancer pain management can be influenced by
the lack of concordance between patient ratings or complaints of
their pain and those made by caregivers. Persistent cancer pain is
often ascribed to a psychological cause when it does not respond
to treatment attempts. In our clinical experience, we have noted
that patients who report their pain as severe are quite likely to
be viewed as having a psychological contribution to their com-
plaints. Staff members ability to empathize with a patients pain
complaint may be limited by the intensity of the pain complaint.
Grossman etal.78 found that, while there is a high degree of con-
cordance between patient and caregiver ratings of patient pain
intensity at the low and moderate levels, this concordance breaks
down at high levels. Thus, a clinicians ability to assess a patients
level of pain becomes unreliable once a patients report of pain
intensity rises above 7 on a visual analog rating scale of 010.
Physicians must be educated as to the limitations of their ability
to objectively assess the severity of a subjective pain experience.
In addition, patient education is often a useful intervention in
such cases.
 Chapter25 cancer-related pain 183

PSYCHIATRIC MANAGEMENT
OF PAIN IN CANCER
Optimal treatment of pain associated with cancer may require a
multimodal strategy, including pharmacological, psychothera-
peutic, rehabilitative, and interventional approaches. Psychiatric
participation in pain management involves the use of psychother-
apeutic, cognitive behavioral, and psychopharmacologic interven-
tions, usually in combination.
Psychotherapy and Cancer Pain
The goals of psychotherapy for cancer patients with pain are to pro-
vide support, knowledge, and skills (Table 25.6). Utilizing short-term
supportive psychotherapy focused on the crisis created by the medi-
cal illness, the therapist provides emotional support, continuity, and
information, and assists in adaptation. The therapist has a role in
emphasizing past strengths, supporting previously successful cop-
ing strategies, and teaching new coping skills, such as relaxation,
cognitive coping, use of analgesics, self-observation, documentation,
assertiveness, and communication skills. Communication skills are
of paramount importance for both patient and family, particularly
around pain and analgesic issues. The patient and family are the unit
of concern, and need a more general, long-term, supportive relation-
ship within the healthcare system in addition to specific psychologi-
cal approaches dealing with pain and dying, which a psychiatrist,
psychologist, social worker, chaplain, or nurse can provide.
Utilizing psychotherapy to diminish symptoms of anxiety and
depression, factors that can intensify pain, empirically has ben-
eficial effects on cancer pain experience. Spiegel and Bloom79
demonstrated, in a controlled randomized prospective study, the
effect of both supportive group therapy for metastatic breast can-
cer patients in general and, in particular, the effect of hypnotic
pain control exercises. Their support group focused not on inter-
personal processes or self-exploration, but rather on a series of
themes related to the practical and existential problems of living
with cancer. Patients were divided into two treatment groups and
a control group. The treatment patients experienced significantly
less pain than the control patients. Those in the group that com-
bined a self-hypnosis exercise group showed a slight increase, and
the control group showed a large increase in pain.
Group interventions for individuals with cancer pain (even in
advanced stages of disease) are a powerful means of sharing experi-
ences and identifying successful coping strategies. The limitations
of using group interventions for patients with advanced disease are
primarily pragmatic. The patient must be physically comfortable
Table25.6 Goals and Forms of Psychotherapy for Pain in Patients
withAdvanced Disease
Goals Form
Supportprovide continuity Individualssupportive/crisis
intervention
Knowledgeprovide information Familypatient and family are the unit
of concern
Skillsrelaxation cognitive coping Groupshare experiences identify
use of analgesics communication successful coping strategies
enough to participate and have the cognitive capacity to be aware
of group discussion. It is often helpful for family members to attend
support groups during the terminal phases of the patients illness.
Interventions aimed at spouses and family members of cancer pain
patients can also be beneficial (see section on Novel Psychosocial
Interventions). Passik etal.80 have worked with spouses of brain
tumor patients in a psycho-educational group that has included
spouses at all phases of the patients diagnosis and treatment. They
have demonstrated how bereavement issues are often a focus of
such interventions from the time of diagnosis. The leaders have
been impressed by the increased quality of patient care that can be
given at home by the spouse (including pain management and all
forms of nursing care) when the spouses engage in such support.
Psychotherapeutic interventions that have multiple foci may be
most useful. On the basis of a prospective study of cancer pain,
cognitive behavioral and psycho-educational techniques based
on increasing support, self-efficacy, and providing education may
prove to be helpful in assisting patients in dealing with increased
pain.81 Results of an evaluation of patients with cancer pain indi-
cate that psychological and social variables are significant pre-
dictors of pain. More specifically, distress specific to the illness,
self-efficacy, and coping styles were predictors of increased pain.
Cognitive Behavioral Techniques
Cognitive behavioral techniques can be useful as adjuncts to the
management of pain in cancer patients (Box 25.5). These tech-
niques fall into two major categories: cognitive techniques and
Box 25.5 Cognitive Behavioral Techniques Used by Pain Patients
With Advanced Disease
Psycho-education
Preparatory information
Self-monitoring
Relaxation
Passive breathing
Progressive muscle relaxation
Distraction
Focusing
Controlled by mental imagery
Cognitive distraction
Behavioral distraction
Combined techniques (relaxation and distraction)
Passive/progressive relaxation with mental imagery
Systematic desensitization
Meditation
Hypnosis
Biofeedback
Music therapy
Cognitive therapies
Cognitive distortion
Cognitive restructuring
Behavioral therapies
Modeling
Graded task management
Contingency management
Behavioral rehearsal
184 Section V management of specific physical symptoms
behavioral techniques. Both techniques comprise a range of
techniques, including passive relaxation with mental imagery,
cognitive distraction or focusing, progressive muscle relaxation,
biofeedback, hypnosis, and music therapy.82 The goal of treatment
is to guide the patient toward a sense of control over pain. Some
techniques are primarily cognitive in nature, focusing on percep-
tual and thought processes, and others are directed at modify-
ing patterns of behavior that help cancer patients cope with pain.
Behavioral techniques for pain control seek to modify physiologic
pain reactions, respondent pain behaviors, and operant pain
behaviors (see Box 25.6 for definitions).
Relaxation Techniques
Several techniques can be used to achieve a mental and physi-
cal state of relaxation. Muscular tension, autonomic arousal, and
mental distress exacerbate pain.83,84 Some specific relaxation
Box 25.6 Cognitive Behavioral Techniques:Definitions
andDescriptions
Behavioral The clinical use of techniques derived from the
therapy experimental analysis of behavior, that is,
learning and conditioning for the evaluation,
prevention, and treatment of physical disease or
physiological dysfunction.
Cognitive therapy A focused intervention targeted at changing
maladaptive beliefs and dysfunctional attitudes.
The therapist engages the client in a process of
collaborative empiricism, where these underlying
beliefs are challenged and corrected.
Operant pain Pain behaviors resulting from operant learning
or conditioning. Pain behavior is reinforced and
continues because of secondary gain, that is,
increased attention and caring.
Respondent pain Pain behaviors resulting from respondent learning
or conditioning. Stimuli associated with prior
painful experiences can elicit increased pain and
avoidance behavior.
Cognitive Redefinition of some or all aspects of the patients
restructuring interpretation of the noxious or threatening
experience, resulting in decreased distress, anxiety,
and hopelessness.
Self-monitoring Written or audiotaped chronicle that the patient
(pain diary) maintains to describe specific agreed-upon
characteristics associated with pain.
Contingency Focusing of patient and family member responses
management that either reinforce or inhibit specific behaviors
exhibited by the patient. Method involves
reinforcing desired well behaviors.
Grade task A hierarchy of tasks, that is, physical, cognitive,
assignments and behavioral, are compartmentalized and
performed sequentially in manageable steps,
ultimately achieving an identified goal.
Systematic Relaxation and distraction exercises paired with
desensitization a hierarchy of anxiety-arousing stimuli presented
through mental imagery, or presented in vivo,
resulting in control of fear.
techniques include (1) passive relaxation, focusing attention on
sensations of warmth and decreased tension in various parts of
the body, (2)progressive muscle relaxation, involving active tens-
ing and relaxing of muscles, and (3)meditation.
Hypnosis
Hypnosis can be a useful adjunct in the management of cancer
pain.79,82,8588 Hypnotherapy, usually involving the teaching of
self-hypnotic techniques, can be used effectively in the manage-
ment of pain associated with invasive procedures.89 In a controlled
trial comparing self-hypnosis with cognitive behavioral ther-
apy in relieving mucositis following a bone marrow transplant,
patients utilizing self-hypnosis reported a significant reduction in
pain compared to patients who used cognitive behavioral tech-
niques.81 The hypnotic trance is essentially a state of heightened
and focused concentration, and thus it can be used to manipulate
the perception of pain.
Biofeedback
Fotopoulos et al.90 noted significant pain relief in a group of
cancer patients who were taught electromyographic (EMG) and
electroencephalographic (EEG) biofeedback-assisted relaxation.
Only 2 of 17 were able to maintain analgesia after the treatment
ended. Alack of generalization of effect can be a problem with
biofeedback techniques. Although physical condition may make
a prolonged training period impossible, especially for the termi-
nally ill, most cancer patients can often use EMG and tempera-
ture biofeedback techniques for learning relaxation-assisted pain
control.91
Novel Psychosocial Interventions
It should be noted that nontraditional psychosocial interventions
for cancer pain hold great promise. For example, Keefe et al.92
tested the efficacy of a partner-guided cancer pain management
protocol. The partner-guided pain management training proto-
col was a three-session intervention conducted in patients homes
that integrated educational information about cancer pain with
systematic training of patients and partners in cognitive and
behavioral pain-coping skills. Data analyses revealed that the
partner-guided pain management protocol produced signifi-
cant increases in partners ratings of their self-efficacy for help-
ing the patient control pain and self-efficacy for controlling other
symptoms.
Aromatherapy
Aromas have been shown to have innate relaxing and stimulat-
ing qualities. Our colleagues at Memorial Hospital have recently
begun to explore the use of aromatherapy for the treatment of
procedure-related anxiety (i.e., anxiety related to magnetic reso-
nance imaging [MRI] scans). Utilizing the scent heliotropin,
Manne et al.93 reported that two-thirds of the patients in their
study found the scent especially pleasant and reported feeling
much less anxiety than those who were not exposed to the scent
during MRI. As a general relaxation technique, aromatherapy
may have an application for pain management, but this is as yet
unstudied.

PHARMACOTHERAPY FOR PAIN
Although the management of analgesic medications is more often
undertaken by the oncologist or palliative care specialist, it is essen-
tial that the psycho-oncologist have a thorough understanding of
the analgesic medications most often used in the management of
cancer-related pain. The World Health Organization (WHO) has
devised guidelines for analgesic management of cancer pain that the
Agency for Health Care Policy and Research (AHCPR) has endorsed
for the management of pain related to cancer.94 These guidelines,
known widely as the WHO Analgesic Ladder and discussed below,
have been well validated.90 Adjuvant agents, such as laxatives and
psychostimulants, are useful in preventing as well as treating opioid
side effects such as constipation or sedation, respectively. Adjuvant
analgesic drugs, such as the antidepressant analgesics, are suggested
for considered use, along with opioids and NSAIDs, in all stages of
the analgesic ladder (mild, moderate, or severe pain).
WHO Analgesic Ladder
In 1986 the WHO proposed the analgesic ladder following the
recommendations of an international group of experts. The
three-step analgesic ladder proposed the use of a limited number
of relatively inexpensive medications, such as morphine, in a step-
wise approach. It helped legitimize the use of opioids for treatment
of cancer pain and encouraged worldwide teaching campaigns on
the management of pain and side effects of the analgesics.95 This
advice is applicable today not only for cancer pain but also for
non-cancer-related pain. This ladder proposed that treatment of
pain should begin with a non-opioid; when pain is not adequately
managed, one should escalate to a weak opioid, and then to a
stronger opioid. The ladder also included the possibility of adding
adjuvant treatments such as for neuropathic pain.
Adapting the Ladder and Its Step Up, Step Down Use
With the advent of newer treatments modalities, especially in
the arena of interventional pain management, there is scope
to further complement the original three-step ladder.95 Today,
nerve blocks, epidural injections, patient-controlled analgesia
(PCA) pumps, neurolytic block therapy, spinal cord stimulators,
Table25.7 Non-Opioid Analgesics
Medication Usual Dose
Ibuprofen (Advil, Motrin) 400 mg four times a day (maximum daily
dose=3200 mg)
Ketorolac (Toradol) 1530 mg IV Q 6 hours for maximum of
5days
Choline and magnesium salicylate 1.54.5 g in 3 divided doses
combinations
Salsalate (Salflex) 23 g in 2 or 3 divided doses
Acetaminophen (Tylenol) 650 mg q4 hr (maximum daily dose=4 g) Hepatic dysfunction; hepatic failure; renal disease;
Adapted from NCCN. Adult Cancer Pain Guidelines, version 2.2014. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp#supportive2014.
Chapter25 cancer-related pain 185
and neurosurgical procedures are considered by some as a fourth
step to the ladder. Additionally, non-steroidal agents with or
without adjuvants and interventions can be used at any step. This
version of the analgesic ladder can be used in a bidirectional way.
The slower upward pathway can be used for chronic pain and the
cancer pain. For acute pain, breakthrough pain, and severe pain,
one could choose interventions or step four. When pain is well
managed, one can step down to medications from step three.
Portenoy 96 has described the indications for and the use of three
classes of analgesic drugs that have applications in the manage-
ment of cancer and acquired immunodeficiency syndrome (AIDS)
patients with pain:non-opioid analgesics (such as acetaminophen,
aspirin, and other NSAIDs), opioid analgesics (of which morphine
is the standard), and adjuvant analgesics (such as antidepressants
and anticonvulsants).
Non-opiod Pharmacotherapy:NSAID
and Other Adjuvant Analgesics
The non-opioid analgesics (Table 25.7) are prescribed principally
for mild to moderate pain or to augment the analgesic effects of
mild opioid analgesics in the treatment of severe pain.
Acetaminophen and Non-Steroidal Anti-Inflammatory
Drugs(NSAIDs)
Evidence supports the use of anti-inflammatory drugs such as acet-
aminophen/paracetamol and non-steroidal anti-inflammatory
drugs (NSAIDs) for mild cancer pain.
Cyclooxygenase inhibitors, or non-steroidal anti-inflammatory
drugs (NSAIDs), are a heterogeneous group of substances that
block either the cyclooxygenase site of enzyme cyclooxygenase
type 1 or 2 (COX 1 and COX 2, respectively), or its peroxidase
site.97 In the first category are ibuprofen, diclofenac, indometha-
cin, coxibs (rofecoxib, celecoxib); the second category includes
acetaminophen and metamizole sodium.98
Acetaminophen differs from the majority of non-steroidal
anti-inflammatory drugs (NSAIDs) and selective inhibitors
of prostaglandin H2 synthase (PGHS) 2 because it lacks sig-
nificant anti-inflammatory activity.99 Acetaminophen inhibits
production of lipoxygenase and cyclooxygenase and therefore
Side Effects
Epigastric pain; gastric or duodenal ulcers;
GI bleeding; tinnitus; nausea and vomiting;
nervousness; rash. Use caution in patients
at high risk for renal, GI, or cardiac toxicities;
thrombocytopenia, or bleeding disorders.
Same as above
Same as above
Nausea; GI bleeding; tinnitus; hearing impairment;
hepatic dysfunction; decreased creatinine clearance
nephropathy; anemia; SIADH; transient hypothermia
186 Section V management of specific physical symptoms
decreases prostaglandin and interleukin-1 in the hypothalamus.
Acetaminophen has been studied regarding its interferences
with the cannabinoid system. Following deacetylation, acet-
aminophens primary amine is conjugated with arachidonic acid
in the brain and the spinal cord to form the potent TRPV1 ago-
nist N-arachidonoylphenolamine (AM404). AM404 also inhib-
its purified COX 1 and COX 2 and prostaglandin synthesis in
lipopolysaccharide-stimulated RAW264.7 macrophages. This
novel metabolite of acetaminophen is present in the pain and
thermoregulatory pathways. It acts as an agonist on TRPV1 recep-
tors, a COX 1 and COX 2 inhibitor, and inhibits the reuptake of
anandamide, with an analgesic effect.100
Acetaminophen Alone Versus Combinations
With Mild Opioids
In a Cochrane review101 of 51 studies, with 5762 participants, 3277
participants were treated with a single oral dose of paracetamol
and 2425 with placebo. About half of participants treated with
paracetamol at standard doses achieved at least 50% pain relief
over four to six hours, compared with about 20% treated with
placebo. Number needed to Treat (NNTs) for at least 50% pain
relief over four to six hours following a single dose of paracetamol
were as follows:500 mg NNT 3.5 (2.7 to 4.8); 600 to 650 mg NNT
4.6 (3.9 to 5.5); 975 to 1000 mg NNT 3.6 (3.4 to 4.0). There was no
dose response. Sensitivity analysis showed no significant effect of
trial size or quality on this outcome. About half of participants
needed additional analgesia over four to six hours, compared
with about 70% with placebo. In a randomized controlled trial
to evaluate the efficacy of oxycodone (5 mg)/acetaminophen (325
mg) compared with placebo every six hours for three days for
pain caused by bone metastases in 246 patients already on opi-
oids, it was found that the oxycodone/acetaminophen group had
improved pain relief, less breakthrough pain, and reduced need
for rescue pain relief. However, the study design did not allow
the relative contribution of each agent in the combination to be
determined.102
The analgesic effects of the NSAIDs result from their inhibition
of cyclooxygenase and the subsequent reduction of prostaglan-
dins in the tissues. The concurrent use of NSAIDs or acetamino-
phen and opioids provides more analgesia than does either of the
drug classes alone. In contrast to opioids, NSAIDs have a ceiling
effect for analgesia, do not produce tolerance or dependence, have
antipyretic effects, and have a different spectrum of adverse side
effects.103
The NSAIDs mechanisms of action, pharmacokinetics, and
pharmacodynamics inf luence the analgesic response. The
selection of the NSAID should take into account the etiology
and severity of the pain, concurrent medical conditions that
may be relative contraindications (e.g., bleeding diathesis),
associated symptoms, and favorable experience by the patient
as well as the physician. From a practical point of view, an
NSAID should be titrated to effect as well as to side effects.
There is also variability in patient response to both relief and
adverse reactions; if the results are not favorable, an alternative
NSAID should be tried.
Adding an NSAID to an opioid for stronger cancer pain is effi-
cacious, but the risk of long-term adverse effects has not been
quantified. There is limited evidence to support using acetamino-
phen with stronger opioids.104
Adverse Effects of NSAIDs
The major adverse effects associated with NSAIDs include gastric
ulceration, renal failure, hepatic dysfunction, and bleeding. The
use of NSAIDs has been associated with a variety of GI toxici-
ties, including minor dyspepsia and heartburn, as well as major
gastric erosion. The use of NSAIDs, such as indomethacin, and
infection with Helicobacter pylori are major causes of gastric
ulcers. Although some clinical studies suggest that infection
with H. pylori increases the risk of developing NSAID-induced
gastric lesions, the molecular mechanism governing this effect
is unknown. In a study by Namba etal., conducted in mice, the
authors suggested that H.pylori exacerbates NSAID-induced gas-
tric lesions through suppression of expression of ER chaperones,
which stimulates NSAID-induced mucosal cell death.105
The non-acetylated salicylates, such as salsalate, sodium salicy-
late, and choline magnesium salicylate, theoretically have fewer
GI side effects and might be considered in cases where GI dis-
tress is an issue. Prophylaxis for NSAID-associated GI symptoms
includes H2-antagonist drugs (cimetidine 300 mg tid-qid or ranit-
idine 150 mg bid), misoprostol 200 mg qid, omeprazole 20 mg qid,
or an antacid. Patients should be informed of these symptoms.
NSAIDs affect kidney function and should be used with caution.
Prostaglandins are involved in the autoregulation of renal blood
flow, glomerular filtration, and the tubular transport of water and
ions. NSAIDs can cause a decrease in glomerular filtration, acute
and chronic renal failure, interstitial nephritis, papillary necrosis,
and hyperkalemia.106 In patients with renal impairment, NSAIDs
should be used with caution, since many (i.e., commonly used,
ketoprofen, naproxen) are highly dependent on renal function
for clearance. The risk of renal dysfunction is greatest in patients
with advanced age, pre-existing renal impairment, hypovolemia,
concomitant therapy with nephrotoxic drugs, and heart failure.
In cancer patients with complex comorbidities, opioids would
be a preferred and recommended analgesic choice. Additionally,
prostaglandins modulate vascular tone, and their inhibition by
the NSAIDs can cause hypertension as well as interference with
the pharmacologic control of hypertension.107 Caution should be
used in patients receiving -adrenergic antagonists, diuretics, or
angiotensin-converting enzyme inhibitors. Several studies have
suggested that there is substantial biliary excretion of several
NSAIDs, including indomethacin and sulindac. In patients with
hepatic dysfunction, these drugs should be used with caution.
NSAIDs, with the exception of the non-acetylated salicylates (e.g.,
sodium salicylate, choline magnesium trisalicylate), produce inhi-
bition of platelet aggregation (usually reversible, but irreversible
with aspirin). As stated previously, NSAIDs should be avoided in
patients who are thrombocytopenic or who have clotting impair-
ment. Patients must be educated regarding these side effects and
refrain from their use, especially in chronic pain management.
The use of NSAIDs in patients with cancer and AIDS must be
accompanied by heightened awareness of toxicity and adverse
effects. NSAIDs are highly protein bound, and the free fraction
of available drug is increased in cancer patients who are cachec-
tic, wasted, and hypo-albuminic, often resulting in toxicities and
adverse effects. Patients with cancer are frequently hypo-volemic
and on concurrent nephrotoxic drugs and so are at increased risk
for renal toxicity related to NSAIDs. Finally, the antipyretic effects
of the NSAIDs may interfere with early detection of infection in
patients with cancer. Again, patients and their caregivers need to

be educated and cautioned regarding these important aspects of
their cancer management.
COX 2 inhibitors have an analgesic action equal to that of con-
ventional NSAIDs, but with fewer GI complications, and have
been widely used for rheumatic diseases.108 COX 2 inhibitors are
associated with an increased risk of adverse cardiovascular events,
including infarction, stroke, and new onset or worsening of
pre-existing hypertension, GI irritation, ulceration, bleeding and
perforation, and are contraindicated for the treatment of periop-
erative pain in the setting of coronary artery bypass graft (CABG).
Corticosteroids
Corticosteroid drugs have analgesic potential in a variety of
chronic pain syndromes, including neuropathic pains and pain
syndromes resulting from inflammatory processes.109 Like other
adjuvant analgesics, corticosteroids are usually added to an opioid
regimen. They have a specific role in spinal cord compression and
brain metastases, where improved analgesia is a secondary bene-
fit. There is limited evidence for adding corticosteroids to stronger
opioids when pain control is the primary objective.104 In patients
with advanced disease, these drugs may also improve appetite,
nausea, malaise, and overall quality of life. Adverse effects include
neuropsychiatric syndromes, GI disturbances, and immunosup-
pression. Major precautions must be exercised in cases of con-
current NSAID use, diabetes, active peptic ulcer disease, and in
patients on anticoagulants.104
Anesthetics
Local anesthetic drugs may be useful in the management of neu-
ropathic pains characterized by either continuous or lancinating
dysesthesias. Controlled trials have demonstrated the efficacy
of tocainide and mexiletine, and there is clinical evidence that
suggests similar effects from flecainide and subcutaneous lido-
caine.109 It is reasonable to undertake a trial with oral local anes-
thetic in patients with continuous dysesthesias who fail to respond
adequately to, or who cannot tolerate, the tricyclic antidepressant
agents (TCAs) and with patients with lancinating pains refractory
to trials of anticonvulsant drugs and baclofen. In a recent random-
ized controlled, double-blind trial, estrogen-deficient breast can-
cer survivors with severe penetrative dyspareunia applied either
saline or 4% aqueous lidocaine to the vulvar vestibule for three
minutes before vaginal penetration. Forty-six patients, screened
to exclude pelvic muscle and organ pain, uniformly had severe
vulvovaginal atrophy, dyspareunia (median pain 8/10, interquar-
tile range 79), and elevated sexual distress scores (median 30.5,
interquartile 2337). Users of lidocaine had less intercourse pain
in the blinded phase (median score 1.0 compared with saline 5.3,
P=.015). After open-label lidocaine use, 37 of 41 (90%) reported
comfortable penetration. Sexual distress had decreased (median
14, interquartile range 320, P <.001). Of 20 abstainers who com-
pleted the study, 17 (85%) had resumed penetrative intimacy. No
partners complained of numbness.110
Bisphosphonates
Bone metastases cause devastating clinical complications lead-
ing patients to have pain, poor quality of life, loss of mobility, and
autonomy. Complications from osseous metastases cause a big
economic burden, reflected by repeated admissions for uncon-
trolled symptoms. Management of symptoms associated with bone
Chapter25 cancer-related pain 187
metastasis includes systemic analgesics, glucocorticoids, radia-
tion (external beam radiation and radiopharmaceuticals), ablative
techniques (radiofrequency ablation and cryoablation), chemo-
therapeutic agents, hormonal therapies, interventional techniques
(e.g., kyphoplasty), and surgical approaches.111 Bisphosphonates
inhibit osteoclast bone resorption by attaching to hydroxyapa-
tite binding sites, and decrease osteoclast activity by decreasing
osteoclast progenitor cells and increasing osteoclast apoptosis.
Thus, these are useful in the management of pain arising from
bony metastasis where there is an upregulation of the osteoclastic
activity.104 These have become a standard therapy for bony metas-
tasis. Late last year, the Food and Drug Administration approved
denosumab to prevent skeletal-related events (SREs) associated
with metastatic solid tumors. This drug is a monoclonal antibody
that inhibits the receptor activator of nuclear factor B (RANK)-
RANK ligand interaction.
Opioid Pharmacotherapy
Opioid analgesics are the mainstay for the treatment of moderate
to severe pain in patients with advanced cancers. When optimally
administered, these drugs provide adequate relief to more than
three-quarters of patients with cancer pain.112
Opioids used for the relief of cancer-related pain include mor-
phine, fentanyl, oxycodone, hydromorphone, oxymorphone,
levorphanol, methadone, and more recently Tapentadol. In a
recent study by Mercadante et al., Tapentadol used in doses of
350450 mg/day was well tolerated and effective in opioid toler-
ant patients with cancer pain and could be considered as a flexible
drug to be used for the management of moderate to severe cancer
pain. This study was limited by its open-label, uncontrolled design,
the number of patients lost in follow-up, and discontinuation of
the treatment for several reasons. Alarger sample size and further
studies are needed regarding the role and impact of Tapentadol
in cancer pain management.113 Another study reported effective
pain control with improved gastrointestinal tolerability versus
morphine SR in patients with moderate to severe cancer-related
pain that was well-controlled on their previous opioid.114 The
selection of one drug over another is typically based on clinical
judgment, comorbidities, cost of the drug or insurance coverage,
and availability of a systemic and/or parenteral formulation.
In choosing the appropriate opioid analgesic for cancer
pain, Portenoy115 highlights the following important consid-
erations:opioid class, choice of weak versus strong opioids,
pharmacokinetic characteristics, duration of analgesic effect,
favorable prior response, and opioid side effects (Box 25.7).
Opioid Classes
Opioid analgesics are divided into two classes:the agonists and the
agonist-antagonists, on the basis of their affinity to opioid recep-
tors. Pentazocine, butorphanol, and nalbuphine are examples of
opioid analgesics with mixed agonist-antagonist properties. These
drugs can reverse opioid effects and precipitate an opioid with-
drawal syndrome in patients who are opioid tolerant or depen-
dent. They are of limited use in the management of chronic pain in
cancer and AIDS. Oxycodone (in combination with either aspirin
or acetaminophen), hydrocodone, and codeine are the so-called
weaker opioid analgesics and are indicated for use in step 2 of
the WHO ladder for mild to moderate pain. More severe pain is
best managed with morphine or another of the stronger opioid
188 Section V management of specific physical symptoms
Box 25.7 Principles of Opioid Analgesic Use
1. Choose an appropriate drug.
2. Start with lowest dose possible.
3. Titrate dose.
4. Use as needed doses selectively.
5. Use an appropriate route of administration.
6. Be aware of equivalent analgesic doses.
7. Use a combination of opioid, non-opioid, and adjuvant
drugs.
8. Be aware of tolerance.
9. Understand physical and psychological dependence.
10. Consider referral to a cancer pain management specialist or
a palliative care clinician when pain or side effects remain
refractory.
analgesics, such as hydromorphone, methadone, levorphanol, or
fentanyl. Oxycodone, as a single agent without aspirin or acet-
aminophen, is available in immediate and sustained-release forms
and is considered a stronger opioid in these forms. Oxymorphone,
including Numorphan, Opana, and Opana ER, is a potent opioid
analgesic. They act quickly when taken orally and have signifi-
cantly longer half-lives than morphine. Rectal administration is
an alternative for those patients unable to take oral medications.
Equianalgesic dosages may be due to pharmacokinetic differences.
Pharmacokinetics
A basic understanding of the pharmacokinetics of the opioid
analgesics116 is important for the cancer and AIDS care provider.
Opioid analgesics with long half-lives, such as methadone and
levorphanol, require approximately five days to achieve a steady
state. Despite their long half-lives, the duration of analgesia that
they provide is considerably shorter (i.e., most patients require
administration of the drug every 46 hours). As both methadone
and levorphanol tend to accumulate with early initial dosing,
delayed effects of toxicity can develop (primarily sedation and,
more rarely, respiratory depression).
Duration of Effects
The duration of analgesic effects of opioid analgesics varies
considerably. Immediate-release preparations of morphine or
oxycodone often provide only three hours of relief and must be
prescribed on an every three-hour, around-the-clock basis (not as
needed). Methadone and levorphanol may provide up to six hours
of analgesia. There is individual variation in the metabolism of
opioid analgesics, and there can be significant differences between
individuals in drug absorption and disposition. These differences
lead to a need for alterations in dosing, route of administration,
and scheduling for maximum analgesia in individual patients.
While parenteral administration (IV, intramuscular, subcutane-
ous) yields a faster onset of pain relief, the duration of analgesia
is shorter unless a continuous infusion of opioid is instituted. The
use of continuous subcutaneous or IV infusions of opioids, with or
without patient-controlled analgesia (PCA) devices, has become
commonplace in caring for cancer patients with escalating pain
and in hospice and home settings during late stages of disease.
Routes of Administration
The oral route is often the preferred route of administration of
opioid analgesics from the perspectives of convenience and cost.
Immediate-release oral morphine or hydromorphone prepara-
tions require that the drug be taken every three to four hours.
Longer-acting, sustained-release oral morphine preparations and
oxycodone preparations are now available that provide up to 812
hours of analgesia (or longer), minimizing the number of daily
doses required for the control of persistent pain. Rescue doses
of immediate-release, short-acting opioid are often necessary to
supplement the use of sustained-release morphine or oxycodone,
particularly during periods of titration or pain escalation. The
transdermal fentanyl patch system (Duragesic) also has applica-
tions in the management of severe pain in cancer. Each transder-
mal fentanyl patch contains a 48- to 72-hour supply of fentanyl,
which is absorbed from a depot in the skin. Levels in the plasma
rise slowly over 1218 hours after patch placement, so, with the
initial placement of a patch, alternative opioid analgesia (oral, rec-
tal, or parenteral) must be provided until adequate levels of fen-
tanyl are attained. The elimination half-life of this dosage form
of fentanyl is long (21 hours), so it must be noted that significant
levels of fentanyl remain in the plasma for approximately 24 hours
after the removal of a transdermal patch. The transdermal sys-
tem is not optimal for rapid dose titration of acutely exacerbated
pain; however, a variety of dosage forms are available. As with
sustained-release morphine preparations, all patients should be
provided with oral or parenteral rapidly acting short-duration
opioids to manage breakthrough pain. The transdermal system
is convenient and eliminates the reminders of pain associated
with repeated oral dosing of analgesics. In patients with cancer
and AIDS, it should be noted that the absorption of transdermal
fentanyl can be increased with fever, resulting in increased plasma
levels and shorter duration of analgesia from the patch.
It is important to note that opioids can be administered through
various routes:oral, rectal, transdermal, IV, subcutaneous, intra-
spinal, and even intraventricularly.117 There are advantages and
disadvantages, as well as indications, for the use of these various
routes. Further discussion of such alternative delivery routes as
the intraspinal route are beyond the scope of this chapter; how-
ever, interested readers are directed to the Agency for Health Care
Policy and Research Clinical Practice Guideline:Management of
Cancer Pain,94 available free of charge through 1-800-4 CANCER.
Morphine
Morphine has the longest history in the treatment of pain and is
usually considered to be a standard for comparison across opioid
drugs and opioid conversion. It is a natural opiate derived from
the opium poppy or papaver somniferum. It is the opioid of choice
for cancer-related pain for many patients. However, in some
patients the benefits of morphine are outweighed by its side effect
profile. Morphine is metabolized to morphine-3-glucuronide
and morphine-6-glucuronide, which are excreted renally.
Results from a prospective study performed in cancer patients
taking oral morphine for moderate-to-severe cancer pain sub-
jects who responded well to morphine (responders) and subjects
who failed to respond to morphine because of lack of analgesia
and/or the presence of intolerable side effects (non-responders/
switchers) showed that (1) morphine responders have higher
plasma morphine and metabolite concentrations compared with

non-responders, (2)lower pain scores are associated with higher
plasma morphine and metabolite concentrations, (3)central side
effects are associated with a higher metabolite:plasma morphine
ratio, and (4)myoclonus is associated with extremely high con-
centrations of plasma morphine and metabolites.
Metabolite concentration can be high idiosyncratically, pre-
sumably as a result of unknown genetic factors, or as a result of
renal disease that reduces excretion. Thus, morphine should be
administered cautiously in the setting of renal insufficiency or if
fluctuation in renal function can be anticipated as a result of treat-
ments with nephrotoxic side effects or disease progression.
Appropriate Dosage
The adequate treatment of pain in cancer also requires consider-
ation of the equianalgesic doses of opioid drugs, which are gener-
ally calculated using morphine as a standard. Cross-tolerance is
not complete among these drugs. Therefore, one-half to two-thirds
of the equianalgesic dose of the new drug should be given as the
starting dose when switching from one opioid to another.118 For
example, if a patient receiving 20 mg of parenteral morphine is
to be switched to hydromorphone, the equianalgesic dose of par-
enteral hydromorphone would be 3.0 mg. Thus, the starting dose
of parenteral hydromorphone should be approximately 1.5 to 2
mg. There is also considerable variability in the parenteral-to-oral
ratios among the opioid analgesics. Both levorphanol and metha-
done have 1:2 intramuscular/oral ratios, whereas morphine has a
1:6 and hydromorphone a 1:5 intramuscular/oral ratio. Failure to
appreciate these dosage differences in route of administration can
lead to inadequate pain control.
Standing Dose Scheduling
Regular (standing) scheduling of the opioid analgesics is the
foundation of adequate pain control. It is preferable to prevent
the return of pain as opposed to treating pain as it reoccurs. As
needed orders for chronic cancer pain often create a struggle
among patient, family, and staff that is easily avoided by regular
administration of opioid analgesics. The typical prescribing of
methadone is a notable exception. It is often initially prescribed on
an as-needed basis to determine the patients total daily require-
ment and to minimize toxicity (due to its long half-life).
Opioid rotation is a useful strategy to improve pain manage-
ment, especially in long-term treatment of pain. Accumulation of
toxic metabolites can lead to the development of symptoms that
include hallucinations, myoclonus, nausea and vomiting, and
persisting pain. Several strategies of opioid rotation using equi-
analgesic doses have been reported to be useful in managing pain
while decreasing the tolerance as well as the frequency and sever-
ity of opioid toxicity.118
Side Effects
While the opioids are extremely effective analgesics, their side
effects are common, and must be anticipated in advance and thus
minimized should they occur. Patients and their caregivers must
be educated regarding these issues up front. Sedation is a com-
mon central nervous system (CNS) side effect, especially during
the initiation of treatment/titration to acceptable analgesic effect.
Sedation usually resolves after the patient has been maintained on
a steady dosage. Persistent sedation can be alleviated with a psy-
chostimulant, such as dextroamphetamine, pemoline, or methyl-
phenidate. All are prescribed in divided doses in early morning
Chapter25 cancer-related pain 189
and at noon. In addition, psychostimulants can improve depressed
mood and enhance analgesia.119 Delirium, of either an agitated or
a somnolent variety, can also occur while the patient is on opi-
oid analgesics and is usually accompanied by attentional deficits,
disorientation, and perceptual disturbances (visual hallucinations
and, more commonly, illusions). Myoclonus and asterixis are
often early signs of neurotoxicity that accompany the course of
opioid-induced delirium. Meperidine (Demerol), when adminis-
tered chronically in patients with renal impairment, can lead to
a delirium resulting from accumulation of the neuro-excitatory
metabolite normeperidine.120
Opioid-induced delirium can be alleviated through the imple-
mentation of three possible strategies: lowering the dose of the
opioid drug presently in use, changing to a different opioid (opioid
rotation), or treating the delirium with low doses of high-potency
neuroleptics, such as haloperidol. The third strategy is especially
useful for agitation and clears the sensorium.121 For agitated states,
IV haloperidol in doses starting between 1 and 2 mg is useful,
with rapid escalation of dose if no effect is noted. Gastrointestinal
side effects of opioid analgesics are common. The most preva-
lent are nausea, vomiting, and constipation.109 Concomitant and
pre-emptive therapy with prochlorperazine or metoclopramide
for nausea is sometimes effective. Since all opioid analgesics are
not tolerated in the same manner, switching to another narcotic
can be helpful if an anti-emetic regimen fails to control nausea.
Constipation caused by narcotic effects on gut receptors is a prob-
lem frequently encountered, and it tends to be responsive to the
regular use of senna derivatives and stool softeners. Currently,
many treatments involving laxatives and prokinetic drugs have
been explored to circumvent opioid-induced bowel dysfunction,
but the outcome in some patients sometimes remains unsatisfac-
tory. In such patients, specific antagonism of peripheral opioid
receptors may offer a more rational approach to the management
of the adverse actions of opioid analgesics in the gut. This goal
may be addressed by the use of opioid receptor antagonists with
limited absorption, such as the use of peripheral opioid receptor
antagonists including methylnaltrexone and alvimopan. These
drugs hold considerable promise in preventing constipation due
to treatments with opioids, whereas the analgesic action of opioids
remains unabated. Mechanical bowel obstruction is a contraindi-
cation to the use of these drugs.122
A careful review of medications is imperative, since anticho-
linergic drugs such as the tricyclic antidepressants (TCAs) can
worsen opioid-induced constipation and can cause bowel obstruc-
tion. Respiratory depression is a worrisome but rare side effect of
the opioid analgesics. Respiratory difficulties can almost always
be avoided if two general principles are adhered to:start opioid
analgesics in low doses in opioid-nave patients; and be cognizant
of relative potencies when switching opioid analgesics, routes of
administration, or both.
NEUROPATHIC PAIN AND THE USE OF
PSYCHOTROPIC ADJUVANT ANALGESICS
The task force on taxonomy of the International Association for
the Study of Pain defined neuropathic pain as pain initiated or
caused by a primary lesion or dysfunction in the nervous system.123
This term is applied to any acute or chronic pain syndromes. Pain
may be described as burning, electric shock-like, or shooting. The
190 Section V management of specific physical symptoms

examination may reveal pain on light non-painful touch or brush Table25.8 Psychotropic Adjuvant Analgesic Drugs for Pain in Patients
(allodynia) or impaired sensation to touch. Often, patients report With Advanced Disease
numbness associated with these pain descriptors. There may be
other focal neurologic deficits, such as weakness, or focal auto- Generic Name Approximate Daily Route
nomic changes such as swelling or a change in skin color. Dosage Range (mg)
The patient with advanced disease and pain has much to gain Tricyclic antidepressants
from the appropriate and maximal utilization of psychotropic
drugs. They are valuable tools in the treatment of cancer pain Amitriptyline 10150 PO, IM
through their utility in addressing mood, anxiety, pain, and other Nortriptyline 10150 PO
common symptoms like fatigue, nausea, low appetite, poor con- Imipramine 15.5150 PO, IM
centration, and poor sleep. Psychotropics, particularly the TCAs,
are useful as adjuvant analgesics in the pharmacological manage- Desipramine 10150 PO
ment of cancer pain and neuropathic pain. These medications are Clomipramine 10150 PO
not only effective in managing symptoms of anxiety, depression, Doxepin 12150 PO, IM
insomnia, or delirium that commonly complicate the course of
advanced disease in patients who are in pain, but also potentiate Heterocyclic and non-cyclic
antidepressants
the analgesic effects of the opioid drugs and have innate analgesic
properties of their own.119 Acommon use of adjuvant analgesics Trazodone 125300 PO
is to manage neuropathic pain where non-opioid adjuvant drugs Maprotiline 50300 PO
that are neuroactive or neuromodulatory may be needed to com-
Serotonin-reuptake
plement opioid therapy.
inhibitors
The current literature supports the use of antidepressants as
adjuvant analgesic agents in the management of a wide variety of Fluoxetine 2080 PO
chronic pain syndromes, including cancer pain.124132 The most Paroxetine 1060 PO
commonly used adjuvant analgesics are antidepressants and anti-
Sertraline 50200 PO
convulsants, but a number of other medications are useful and are
discussed below.133 As to the time course of onset of analgesia or Citalopram 1040 PO
with antidepressants, there appears to be a biphasic process that Escitalopram 1020 PO
occurs with immediate or early analgesic effects that occur within Serotonin norepinephrine dopamine
hours or days, and later, longer analgesic effects that peak over a reuptake inhibitor
four- to six-week period.134136
The primary adjuvant analgesics are anticonvulsant and anti- Nefazodone 100500 PO
depressant medications, but a variety of other drugs are used.137 Serotonin norepinephrine reuptake
Table 25.8 lists the various psychotropic medications with analge- inhibitors
sic properties, their routes of administration, and their approxi- Venlafaxine 75300 PO
mate daily doses.
Duloxetine 2090 PO
Antidepressants H1, 2, serotonin antagonist
The current literature supports the use of antidepressants as adju- Mirtazapine 7.560 PO
vant analgesic agents in the management of a wide variety of
Psychostimulants
chronic pain syndromes, including cancer pain.138
Methylphenidate 2.520 bid PO
Tricyclics Dextroamphetamine 2.520 bid PO
In general, the TCAs are used in cancer pain as adjuvant analgesics, Pemoline 13.7575 bid PO
potentiating the effects of opioid analgesics, and are rarely used as
the primary analgesic.139,140 Amitriptyline is the TCA most stud- Modafinil 100400 PO
ied, and proven effective as an analgesic, in a large number of clin- Phenothiazines
ical trials, addressing a wide variety of chronic pains.135,136,141143 Fluphenazine 13 PO, IM
Other TCAs that have been shown to have efficacy as analgesics
include imipramine,144146 desipramine,147149 nortriptyline,150 Methotrimeprazine 1020 q6h IM, IV
clomipramine,151,152 and doxepin.153 In a placebo-controlled Butyrophenones
double-blind study of imipramine in chronic cancer pain, Haloperidol 13 PO, IV
Walsh154 demonstrated that imipramine had analgesic effects
independent of its mood effects, and was a potent co-analgesic Pimozide 26 bid PO
when used along with morphine. Ventafridda etal.139 reviewed Antihistamines
a multicenter clinical experience with antidepressant agents (tra- Hydroxyzine 50 q4hq6h PO
zodone and amitriptyline) in the treatment of chronic cancer
pain that included a de-afferentation of neuropathic component. (continued)

Table25.8(Continued)
Generic Name Approximate Daily
Dosage Range (mg)
Anticonvulsants
Carbamazepine 200 tid400 tid
Phenytoin 300400
Valproate 500 tid1000 tid
Gabapentin 300 tid1000 tid
Oxcarbazepine 300 bid1800 daily
Pregabalin 50 tid150 bid
Benzodiazepines
Alprazolam 0.252.0 tid
Clonazepam 0.54 bid
Abbreviations:PO=per oral; IM=intramuscular; IV=intravenous; q6h=every 6 hrs;
bid=twice a day; tid=three times a day; qid=four times a day.
Almost all of these patients were already receiving weak or strong
opioids and experienced improved pain control. A subsequent
randomized double-blind study showed both amitriptyline and
trazodone to have similar therapeutic analgesic efficacy.139 Magni
etal.155 reviewed the use of antidepressants in Italian cancer cen-
ters and found that a wide range of antidepressants were used for
a variety of cancer pain syndromes, with amitriptyline being the
most commonly prescribed. In nearly all cases, antidepressants
were used in combination with opioids. There is some evidence
that there may be a subgroup of patients who respond differen-
tially to tricyclics and therefore if amitriptyline fails to alleviate
pain, another tricyclic should be tried. The TCAs are effective as
adjuvants in cancer pain through a number of mechanisms that
include antidepressant activity, potentiation or enhancement of
opioid analgesia, and direct analgesic effects.156,157 Tricyclic anti-
depressants have been shown to be as effective as analgesics for
mucositis when compared to opioids, and for patients for whom
opioids are contraindicated, TCAs may be used.158
There is evidence that the therapeutic analgesic effects, like the
antidepressant effects, of amitriptyline correlate with serum lev-
els, and analgesic treatment failure can be due to low serum lev-
els.159 Ahigh-dose regimen of up to 150 mg of amitriptyline or
higher is suggested.160 There is evidence of a biphasic process that
occurs with immediate or early analgesic effects within hours or
days of initiation151 and later, longer analgesic effects that peak
over a four- to six-week period.141
Treatment should be initiated with a lower dose of amitripty-
line around 1025 mg at bedtime, with slow titration in 1025 mg
increments every two to four days toward a ceiling dose of 150
mg, or until a beneficial effect is achieved. Maximal effect as an
adjuvant analgesic may require continuation of drug for two to six
weeks. Serum levels of antidepressant drug may help to ensure that
therapeutic serum levels of drug are being achieved. Both pain and
depression in cancer patients often respond to lower doses (25100
mg) of amitriptyline than are usually required in the physically
healthy (100300 mg), probably because of impaired metabolism
of these drugs. Potentiation of analgesia can be attempted with
Chapter25 cancer-related pain 191
the addition of lithium augmentation in patients who have limited
analgesic response to a tricyclic.161
Route Tricyclic antidepressants have significant side effects that
require consideration. Anticholinergic side effects like constipa-
tion, dry mouth, blurred vision, urinary retention, incoordina-
tion, worsened cognition, and tremor are not uncommon and
PO typically are dose dependent. Anticholinergic delirium can be
PO precipitated at higher doses. Elderly or medically compromised
patients are more vulnerable to these side effects; thus slow and
PO
careful titration is advised.
PO
PO
Selective Serotonin Reuptake Inhibitors (SSRIs)
SSRIs may be useful as adjuvant analgesics for cancer patients
PO
with pain; however, clinical trials of their efficacy as analgesics
have been equivocal and do not clearly demonstrate the signifi-
PO cant anti-nociceptive properties seen in TCAs and SNRIs.162169
There are several case reports that suggest that fluoxetine may be
PO
a useful adjuvant analgesic in the management of headache,170
fibrositis,171 and diabetic neuropathy.172 One study of fluoxetine
in women with fibromyalgia showed benefit to measures of illness
impact and mood in women with fibromyalgia, but improvements
in pain were small and statistically insignificant.173 Paroxetine
and citalopram have shown analgesic effect in neuropathic pain
but have not been tested in cancer patients.174,175 Escitalopram,
the individually marketed s-isomer of citalopram, is noteworthy
in that it has the highest receptor selectivity in its class, no active
metabolites, and does not significantly affect the CYP450 isoen-
zyme system.176 Sertraline has been shown to reduce hot flashes
in early stage breast cancer patients taking tamoxifen; however,
compared to a placebo, the reduction was not significant.177
Serotonin and Norepinephrine Reuptake
Inhibitors(SNRIs)
Venlafaxine and duloxetine, members of the SNRI class, have
been found to have good analgesic attributes, likely related to
their similarity to TCAs in blocking reuptake of serotonin and
norepinephrine. Their side effect profile is significantly more
tolerable than the TCAs, rendering them more widely useful in
more medically compromised populations. Evidence indicates
benefit from venlafaxine in chemotherapy-induced neuropathy,
post-mastectomy pain syndrome (PMPS), and also was found to
decrease the development of PMPS when administered periop-
eratively.178180 Duloxetine is an effective treatment for depression
and has also been found effective for chemotherapy-induced neu-
ropathic pain.181,182
Mirtazapine, Bupropion, and Trazodone
These three medications are useful in cancer pain as well as gen-
eral symptom management. All three are effective for treating
depressive symptoms and have side effect profiles that can be lev-
eraged advantageously.
Mirtazapine is less studied, but has been noted to have some
benefit for cancer patients in a small pilot study,183 increased
the pain threshold in a small group of healthy subjects,184 and
in mice demonstrated opioid receptor mediated nociception.185
Mirtazapine significantly improved pain, sleep quality, irrita-
bility, and exhaustion in a study of 594 depressed patients with
chronic pain.186 It has potent anti-emetic effects related to 5HT3
192 Section V management of specific physical symptoms
antagonism, promotes appetite, and is also beneficial in treating
insomnia. This has clear implications in cancer patients for whom
nausea, poor appetite, and poor sleep are a common symptom
group.
Bupropion has been shown to have some benefit in neuropathic
pain.187,188 There is some evidence that bupropion improves
cancer-related fatigue189,190 and is effective in promoting smok-
ing cessation, for which it has an FDA indication. Bupropion,
unlike most antidepressants, does not typically cause sexual
dysfunction and was, in fact, found to improve sexual function
in a group of breast cancer patients being treated with adjuvant
chemotherapy.191
Trazodone is beneficial in the treatment of anxiety and depres-
sion, has been found to have some antinociceptive activity in mice,
and theoretically should carry some of the benefits of SNRIs and
TCAs because of similarity in receptor binding profile.192 Clinical
data in humans or focused studies in cancer pain populations are
lacking. Trazodone does have well established benefit for sleep and
can be used as an alternative to sedative-hypnotics, thereby reduc-
ing the risk of delirium.
Monoamine Oxidase Inhibitors (MAOIs)
Monoamine oxidase inhibitors (MAOIs) are less useful in the can-
cer setting because of dietary restriction and potentially dangerous
interactions between MAOIs and narcotics such as meperidine.
Among the MAOI drugs available, phenelzine has been shown to
have adjuvant analgesic properties in patients with atypical facial
pain and migraine.193
ANTICONVULSANTS
Selected anticonvulsant drugs appear to be analgesic for the lanci-
nating dysesthesias that characterize diverse types of neuropathic
pain.109 Clinical experience also supports the use of these agents in
patients with paroxysmal neuropathic pains that may not be lan-
cinating and, to a far lesser extent, in those with neuropathic pains
characterized solely by continuous dysesthesias. In the past, prac-
titioners used carbamazepine because of the good response rates
observed in trigeminal neuralgia, but it is generally not currently
perceived as a first-line anticonvulsant analgesic. Carbamazepine
must be used cautiously in patients with thrombocytopenia, those
at risk for marrow failure, and those whose blood counts must be
monitored to determine disease status. Several newer anticonvul-
sants are now commonly used in the treatment of neuropathic
pain, particularly in cancer patients with chemotherapy-induced
neuropathic pain syndromes. These drugs include gabapentin,
pregabalin, oxcarbazepine, lamotrigine, and felbamate. Of these
anticonvulsants, anecdotal experience has been most favorable
with gabapentin, which is now being widely used by pain special-
ists to treat neuropathic pain of various types. Gabapentin has a
relatively high degree of safety, including no known drugdrug
interactions and a lack of hepatic metabolism.109 Treatment with
gabapentin is usually initiated at a dose of 300 mg per day and
then gradually increased to a dose range of 9003200 mg per
day in three divided doses. Pregabalin is FDA approved for neu-
ropathic pain associated with diabetic neuropathy, as well as for
post-herpetic neuralgia. A randomized placebo-controlled trial
reported by Dworkin et al.194 demonstrated that pregabalin at
doses of 300 mg or 600 mg daily significantly reduced pain by 30%
after eight-week treatment. Oxcarbazepine has shown in small
clinical trials to be effective in the management of trigeminal neu-
ralgia and diabetic neuropathy.195
The American Society of Clinical Oncology in June 2014196 con-
cluded that for the treatment of chemotherapy-induced peripheral
neuropathies (CIPN) in adult cancer survivors, the best available
data support a moderate recommendation for treatment with
duloxetine. Although the CIPN trials are inconclusive regard-
ing tricyclic antidepressants (such as nortriptyline), gabapentin,
and a compounded topical gel containing baclofen, amitriptyline
HCL, and ketamine, these agents may be offered on the basis of
data supporting their utility in other neuropathic pain conditions,
given the limited other CIPN treatment options. Further research
on these agents is warranted.
PSYCHOSTIMULANTS
Psychostimulants can be useful in treating depressed mood,
potentiating analgesia, and also treating some of the side effects of
opioid therapy. Psychostimulants are also useful in diminishing
excessive sedation secondary to narcotic analgesics, and can be
used as adjuvant analgesics. Broadly, there are amphetamines and
non-amphetamine stimulants. Psychostimulants can stimulate
appetite, promote a sense of well-being, and improve feelings of
weakness and fatigue in cancer patients. Tolerance can develop,
and adjustment of dose may be necessary. Side effects that can
limit upward titration include a sense of overstimulation, anxiety,
development of paranoia, and insomnia.
The amphetamines dextroamphetamine and methylphenidate
are useful as antidepressant agents for medically ill cancer patients
with depression.197,198 Bruera etal.147 demonstrated that a regimen
of 10 mg methylphenidate with breakfast and 5 mg with lunch sig-
nificantly decreased sedation and potentiated the analgesic effect
of narcotics in patients with cancer pain. Dextroamphetamine has
also been reported to have additive analgesic effects when used
with morphine in postoperative pain.199
Treatment with dextroamphetamine or methylphenidate usu-
ally begins with a dose of 2.5 mg at 8 a.m. and at noon. The dos-
age is slowly increased over several days until a desired effect is
achieved or side effects (overstimulation, anxiety, insomnia, para-
noia, confusion) intervene. Typically, a dose greater than 30 mg
per day is not necessary, although occasionally patients require up
to 60 mg per day. Patients usually are maintained on methylpheni-
date for one to two months, and approximately two-thirds will be
able to be withdrawn from methylphenidate without a recurrence
of depressive symptoms. Those who do recur can be maintained
on a psychostimulant for up to one year without significant abuse
problems. Tolerance will develop and adjustment of dose may be
necessary. Astrategy we have found useful in treating cancer pain
associated with depression is to start a psychostimulant (starting
dose of 2.5 mg of methylphenidate at 8 a.m. and at noon) and then
to add a TCA after several days to help prolong and potentiate the
short effect of the stimulant.
Modafinil is a wakefulness agent, FDA approved for the treat-
ment of excessive daytime sedation secondary to sleep disorders
(e.g., narcolepsy, sleep apnea), but often used clinically in the pal-
liative care setting to combat sedation and daytime fatigue. 200
Astudy by DeBattista etal.201 testing modafinil on subjects with
major depression and partial response to antidepressants found

that adjunctive treatment with modafinil significantly improved
fatigue and depressive symptoms. Furthermore, modafinil was
found to increase attention, concentration, and cognitive func-
tioning. Fatigue is a common symptom of cancer and cancer
treatment, and modafinil has been shown to improve fatigue in
patients with multiple sclerosis and in cancer populations.202,203
Modafinil, in doses ranging from 50 to 400 mg, is used in pal-
liative care settings to treat fatigue as well as to counteract the
sedation caused by opioids in the setting of pain management.
Modafinil is not a sympathomimetic agent, and its mechanism of
action is distinct from classic psychostimulants. There is some evi-
dence that these newer psychostimulants have lower abuse poten-
tial in general; however, caution is advised in patients with known
substance misuse in the past.204,205
NEUROLEPTICS AND ANTIPSYCHOTIC
AGENTS FOR CANCER-RELATED PAIN
Neuroleptic medications are prescribed for psychotic symptoms
in the general population, but have a very useful place in the
armamentarium for treatment of pain and other symptoms in
cancer patients, namely nausea, vomiting, insomnia, and anxiety.
Phenothiazine neuroleptics are particularly helpful with
nausea and vomiting, and also can offer benefit for anxiety.
Methotrimeprazine is a phenothiazine that is equianalgesic to
morphine, has none of the opioid effects on gut motility, and prob-
ably produces analgesia through -adrenergic blockade.206,207 In
patients who are opioid tolerant, it provides an alternative approach
in providing analgesia by a non-opioid mechanism. It is a dopa-
mine blocker and so has anti-emetic as well as anxiolytic effects.208
Methotrimeprazine can produce sedation and hypotension and
should be given cautiously by slow IV infusion. Unfortunately,
methotrimeprazine has limited availability (e.g., unavailable in the
United States, but available in Canada). Other phenothiazines such
as chlorpromazine and prochlorperazine are useful as anti-emetics
in cancer patients, but probably have limited use as analgesics.209
Fluphenazine in combination with TCAs has been shown to be
helpful in neuropathic pains.210 Haloperidol, a butyrophenone,
is the drug of choice in the management of delirium or psycho-
sis in cancer patients, but evidence for effectiveness as analgesic or
co-analgesic is inconsistent.209,211,212 Pimozide, also a butyrophe-
none, has been shown to be effective as an analgesic in the manage-
ment of trigeminal neuralgia at doses of 412 mg per day.206
Atypical antipsychotics, such as olanzapine, risperidone, que-
tiapine, aripiprazole, and ziprasidone, are primarily used to treat
delirium in the palliative care setting. Boettger and Breitbart 209
suggest that olanzapine and risperidone are the atypical antipsy-
chotics with the most demonstrated efficacy for managing the
symptoms of delirium. Smaller studies and case series reports
suggest potential benefit for quetiapine, 213 ziprasidone,214 and
aripiprazole.215,216 Olanzapine217 has been used to treat unman-
aged pain in the context of anxiety and mild cognitive impair-
ment, with improvement in pain, anxiety, and cognition.
BENZODIAZEPINES AND HYDROXYZINE
Benzodiazepines and the antihistamine hydroxyzine can
be used in the treatment of cancer pain and related anxiety.
Benzodiazepines can be helpful in the management of pain
Chapter25 cancer-related pain 193
through unclear mechanisms, perhaps related to the reduction
in overall pain experience that occurs when anxiety is reduced.
Benzodiazepines have not been felt to have direct analgesic prop-
erties, although they are potent anxiolytics and can be helpful in
reducing anxiety that is associated with painful procedures or
other acutely painful events. Alprazolam offered some benefit in
a series of cancer patients with phantom limb or deafferentation
pain. 218 Clonazepam may be useful in the management of lan-
cinating neuropathic pain and allodynia. 219,220 The synergistic
sedative effects of benzodiazepines when combined with opioids
require caution and judicious use of both drugs, particularly in
debilitated and elderly patients.
Hydroxizine is a mild anxiolytic with sedating and analge-
sic properties that are useful in the anxious cancer patient with
pain.221,222 Focus on pain as the primary symptom is vital, as
uncontrolled pain will continue to produce anxiety despite aggres-
sive anxiolytic treatment. Efforts to reduce nociceptive pain input
should be maximized before pursuing more aggressive anxiolytic
treatment.
PLACEBO
A mention of the placebo response is important to highlight the
misunderstandings and relative harm of this phenomenon. The
placebo response is common, and analgesia is mediated through
endogenous opioids. The deceptive use of placebo response to dis-
tinguish psychogenic pain from real pain should be avoided.
Placebos are effective in a portion of patients for a short period of
time only and are not indicated in the management of cancer pain.
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 CHAPTER26
Nausea and Vomiting
Brian Dietrich, Kavitha Ramchandran,and
Jamie H.Von Roenn
INTRODUCTION
Nausea and vomiting are two of the symptoms most feared by
patients with cancer.1 Although the prevention and treatment of
nausea and vomiting have improved over the past 20years, these
symptoms continue to negatively impact quality of life.2
Definition
Nausea is a subjective symptom. It is the sensation of impending
vomiting, of feeling sick to your stomach or queasy. Vomiting,
an objective, readily measurable symptom has two phases:retch-
ing and expulsion. Autonomic changes may occur during these
processes, including pallor, sweating, hypotension, and saliva-
tion.3 Overall, available anti-emetics are more effective for the
control of vomiting than nausea.4 This is particularly true in the
setting of chemotherapy-induced nausea and vomiting. Both of
these symptoms, nausea and vomiting, must be evaluated.
Evaluation of the Patient
A thorough history and physical examination are the first steps in
the elucidation of the cause of nausea and vomiting. The history
should establish the pattern of nausea and vomiting (i.e., time of
day, association with meals or other symptoms, frequency). When
did the nausea begin? How often does it occur? Does it occur at
the same time of day? For example, early morning vomiting with-
out nausea is associated with increased intracranial pressure. The
quantity and content (i.e., hematemesis, undigested food, or bil-
ious) of the emesis helps define its etiology; that is, large infre-
quent emesis that relieves nausea may indicate an obstruction.
Associated or exacerbating symptoms, such as pain, constipa-
tion, anxiety, anorexia, early satiety, dyspepsia, and cough, fur-
ther define the cause of nausea and vomiting and suggest specific
treatment approaches. Additionally, medical interventions, such
as procedures, surgery, and radiation therapy, can induce nausea
and vomiting.
The patients complete list of current medications and supple-
ments is reviewed with special attention to any recent changes
in dose and schedule. For example, escalation of opioid dose or
discontinuation of high dose steroids may lead to nausea and
vomiting.
Comorbid disease or its therapy may be a contributing factor to
nausea and vomiting. For example, adrenal insufficiency, thyroid,
cardiac, and gastro-esophageal reflux disease may present with
nausea. Alcohol or illicit drug use may impact the incidence of
nausea. For example, cannabinoids decrease nausea, while exces-
sive alcohol use may cause nausea.
Additionally, the primary cancer or its metastases may pres-
ent with nausea. Central nervous system (CNS) primary tumors,
brain metastases, or leptomeningeal disease may present with
nausea secondary to increased intracranial pressure and/or men-
ingeal irritation. Agastrointestinal primary, such as gastric cancer,
can cause obstructive symptoms, including nausea and vomiting.
Peritoneal carcinomatosis and ascites can cause squashed stom-
ach syndrome and nausea.5 Excessive cough may produce nausea
secondary to increased intra-abdominal pressure with coughing.
The physical examination includes an assessment of volume sta-
tus (dry mucous membranes, skin tenting, orthostatics hypoten-
sion) since dehydration may lead to nausea. Mouth lesions may
point toward stomatitis or thrush as an etiology of the symptoms.
Abdominal examination may identify changes in or lack of bowel
sounds, masses, organomegaly, or ascites, leading to further diag-
nostic evaluations. Rectal examination may show fecal impaction,
suggesting constipation-induced nausea. Neurological signs such
as cranial nerve abnormalities or papilledema would indicate
increased intracranial pressure (see Table 26.1).
The laboratory workup seeks to identify metabolic causes of
nausea and vomiting, including uremia, hypercalcemia, hypo-
natremia, and liver disease. Thyroid function tests and fasting
cortisol are useful if the patients clinical presentation suggests a
diagnosis of hypothyroidism or adrenal insufficiency.
The history, physical examination, and initial laboratory stud-
ies may provide clues for appropriate imaging studies needed in
the context of the patients overall goals of care. For a patient with
new neurological findings, magnetic resonance imaging (MRI) of
the brain and/or spinal cord and meninges may be indicated. The
patient with abdominal distension, pain, decreased bowel move-
ments, and hypoactive bowel sounds may need an acute abdomi-
nal series to rule out obstruction.
Pathophysiology
There are four major pathways involved in the pathogenesis of
nausea and vomiting. The area postrema, or vomiting center, is
located in the medulla. The vomiting center receives input from the
chemoreceptor trigger zone, the cortex, peripheral pathways, and
200 Section V management of specific physical symptoms

Table26.1 Common Symptoms and Signs of Nausea and Vomiting in Patients With Cancer

Symptoms Evaluation Etiology

Gastrointestinal
Mouth pain/sores Oropharynx examination Oropharyngeal infection (i.e., thrush/viral)
Endoscopy if indicated esophagitis
Large high-volume emesis Abdominal examination High-level obstruction
Acute abdominal series
Hematemesis History Varices Perforated ulcer/mass
Oropharyngeal examination
Abdominal examination
Endoscopy
Excessive cough History Cough increased abdominal pressure and
Pulmonary examination nausea Pulmonary process infection
Chest X-ray
Right-sided abdominal pain Abdominal examination Liver, gallbladder disease
Colic Abdominal imaging
Constipation/Obstipation Abdominal examination Constipation-related emesis Gastroparesis
Rectal examination
Poor oral intake, cachexia History Physical examination Anorexia
Increased abdominal girth, palpable masses, small-volume Abdominal examination, Abdominal imaging Squashed stomach syndrome from mass
emesis effect, ascites, small bowel obstruction
Metabolic
Abdominal discomfort, confusion, kidney stones Laboratory studies Hypercalcemia
Decreased urine output, confusion Laboratory studies Renal failure
Labile blood pressure, syncopal episodes Laboratory studies including cortisol Adrenal insufficiency
Confusion, changes in volume status Laboratory studies Hyponatremia
Neurologic
Headaches, diplopia, early morning emesis, cranial nerve Neurological examination Increased intracranial pressure
abnormalities CNS imaging
Lumbar puncture
Anxiety/nervousness History Anxiety-induced nausea

Abbreviation:CNS=central nervous system

the vestibular system.6,7 The chemoreceptor trigger zone, located
in the floor of the fourth ventricle, outside the blood-brain barrier,
is exposed to toxins in the bloodstream and cerebral spinal fluid
that may stimulate vomiting. The cortex incorporates input from
the five senses, as well as from other factors, such as meningeal
irritation or increased intracranial pressure, and supplies input
to the vomiting center. Peripheral pathways include mechanore-
ceptors and chemoreceptors in the gastrointestinal tract, which
transmit input to the vomiting center from the vagus, splanch-
nic, glossopharyngeal nerves, and sympathetic ganglia. Finally,
motion triggers nausea and vomiting via labyrinthine input to the
vomiting center from the vestibulocochlear nerve (Figure 26.1).
Multiple neurotransmitters (and neuroreceptors) mediate the
symptoms of nausea and vomiting. These pathways include sero-
tonin (5-HT3), substance P (NK1), dopamine (D2), histamine
(H1), acetylcholine (muscarinic),8,9 and the cannabinoids (CB1).
The predominant site of activity of these neurotransmitters and
receptors are displayed in Figure 26.1.
COMMON ETIOLOGIES OF NAUSEA
ANDVOMITING IN CANCER
Chemotherapy-Induced Nausea and Vomiting
The incidence of chemotherapy-induced nausea and vomiting is
influenced by age, gender, prior experience with chemotherapy,
patient expectations, and the emetogenic potential and dose of the
anti-neoplastic agent. Younger patients and women experience
nausea more often than men or older patients.1012 Patients with
a history of prior chemotherapy-induced nausea and vomiting,
motion sickness, or the expectation of nausea have an increased
likelihood of chemotherapy-induced nausea and vomiting.13
Interestingly, alcoholics and chemotherapy nave patients experi-
ence less nausea than the overall population.8,9
Chemotherapy-related nausea and vomiting are related to the
chemotherapy agent and its dose. These drugs are classified on the
basis of their emetogenic potential. Level 1 drugs are associated
 Chapter26 nausea and vomiting 201

Sensory input
Anxiety
Meningeal
irritation
Increased
intracranial
pressure

Motion Achm
Vestibular system
Labyrinth disorders H1
Cortex

Projections from
vestibular nuclei Intracerebral projections

Drugs D2 (central) Chemoreceptor Achm

Intracerebral Vomiting
Metabolic products 5HT3 H1 Nausea/Vomiting
trigger zone projections center
Bacterial toxins NK1 5HT2

Vagus and Vagus, splanchnic, and

splanchnic nerves glossopharyngeal nerves,
sympathetic ganglia

Mechanical streatch 5HT3 receptors

(eg. Gl obstruction or stasis) in Gl tract Input
Gl mucosal injury (eg, metastases, Mechanoreceptors Peripheral
candida infection, GERD, and chemoreceptors pathways Neuroreceptors
radiation therapy, chemotherapy)
in Gl tract, serosa,
Local toxins and drugs
and viscera Neural pathways

Figure26.1 Interrelationships between neural pathways that mediate nausea and vomiting.
Abbreviations:Achm=muscarinic acetylcholine receptor; D2=dopamine type 2 receptor; GERD=gastroesophageal reflux; GI=gastrointestinal; H1=histamine type 1 receptor;
NK-1=neurokinin type 1 receptor; 5-HT2=5-hydroxytryptamine type 2 receptor; 5-HT3=5-hydroxytryptamine type 3 receptor.Reprinted with permission from Wood G, etal., J Am Med
Ass. 2007;298:11961207. Copyright 2007 American Medical Association. All rights reserved.

with a risk of nausea and vomiting of less than 10%, while level
4 drugs have an emetogenic potential of > 90% (Table 26.2).14,15
Combination regimens containing multiple level 1 drugs do not
change the emetogenicity of the combination. However, a combi-
nation of more than one level 2 drug increases the emetogenicity
of the therapy by one level. The addition of a level 3 or a level 4
agent to a combination regimen increases the emetogenic poten-
tial of the therapy by one level per agent.16
Chemotherapy-induced nausea and vomiting (CINV) is defined
by its timing in relationship to treatment. Anticipatory nausea
and vomiting (ANV) occurs before the initiation of treatment. Its
pathophysiology appears to be an example of classical condition-
ing. Conditioned stimuli (i.e., the voice of the nurse, smells of the
clinic) trigger nausea and vomiting before the initiation of treat-
ment.17 Poor control of nausea and vomiting during prior treat-
ment cycles increases the risk of developing anticipatory nausea
and vomiting. Additionally, with increasing cycles of therapy the
risk of ANV increases.18 Acute nausea and vomiting occur within
24 hours of treatment. Delayed nausea and vomiting occur 2472
hours after chemotherapy.
The mechanism of CINV is multifaceted. Chemotherapy is
thought to release free radicals that cause exocytic release of 5-HT
from enterochromaffin cells in the gut. This stimulates nausea
and vomiting via the vagal and splanchnic nerves. Additionally,
chemotherapy acts directly on the vomiting center via 5-HT3 and
NK-1 receptors. Furthermore, CINV may be driven by anxiety, as
is the case with anticipatory symptoms.19,20
The recommended treatment of chemotherapy-induced vom-
iting depends on the emetogenicity of the treatment regimen.
Multiple guidelines for the treatment of CINV have been pub-
lished (Table 26.3). In general, treatment is more effective for the
control of vomiting than it is for nausea.
Opioid-Induced Nausea and Vomiting
Opioids stimulate nausea in one-half to two-thirds of opioid nave
patients. Nausea and emesis can occur with initiation or escala-
tion of an opioid and with rotation from one opioid to another.
The mechanism (and receptors involved) of opioid-induced nau-
sea is multifactorial. Opioids slow gastrointestinal tract (GI)
motility, leading to constipation (H1, muscarinic acetylcholine
receptor), delay gastric emptying (D2 receptor), stimulate of the
chemoreceptor trigger zone (CTZ; D2 receptor), and may sensitize
the labyrinth (H1, muscarinic acetylcholine receptor).
Opioid-induced nausea and vomiting generally resolves within
two or three days of initiation or escalation of the medication.
Prophylactic anti-emetics, such as D2 antagonists, around the
clock during the first two or three days of the opioid usually pre-
vent nausea. If nausea occurs in spite of treatment, titrating up
the anti-emetic, rotation to an alternative opioid, or reduction of
the opioid (if pain control allows) is usually effective.21,22 If these
202 Section V management of specific physical symptoms

Table26.2 Emetogenicity of Parenteral Chemotherapeutic Drugs Table26.3 Drug Regimens for the Prevention of
Chemotherapy-Induced Emesis by Emetic Risk Category
Level Frequency of Chemotherapeutic Drug and Dose
Emesis (Percent) Emetic Risk Category Anti-Emetic Regimens and Schedules
(Incidence of Emesis
High > 90 Cisplatin Without Anti-Emetics)
Mechlorethamine Streptozotocin
Cyclophosphamide 1500 mg/m2 High (> 90%) 5-HT3 serotonin RA:day 1
Carmustine Dexamethasone:days 14
Dacarbazine Aprepitant:days 1, 2, 3
Dactinomycin or
Moderate 3090 Oxaliplatin Olanzapine containing regimen:c
Cytarabine >1 g/m2 Olanzpine 10 mg PO days 14
Carboplatin Palonosetron 0.25 mg IV day 1
Ifosfamide Cyclophosphamide Dexamethasone 20 mg IV day 1
<1500 mg/m2 Moderate (30%90%) 5-HT3 serotonin RA:day 1
Doxorubicin Dexamethasone:day 1 (2, 3)a
Daunorubicin With or without
Epirubicin Aprepitant:days 1, 2, 3b
Idarubicin or
Irinotecan Olanzapine containing regimen (same as above for
Ixabepilone high emetogenic risk)
Low 1030 Paclitaxel Low (10%30%) Dexamethasone 12 mg PO or IV:day 1
Docetaxel or
Mitoxantrone Metoclopramide 1040 mg PO/IV then q46h
Topotecan prn
Etoposide or
Pemetrexed Prochlorperazine 10 mg PO then q6h prn
Methotrexatea or
Mitomycin 5-HT3 RA:c
Gemcitabine Dalasetron 100 mg PO daily
Cytarabine <= 1000 mg/m2 Granisetron 2 mg PO daily or 1 mg PO bid
Fluorouracil Ondansetron 1624 mg PO daily
Bortezomib Minimal (< 10%) Prescribe as needed
Cetuximab
Abbreviations:5-HT3=5-hydroxytryptamine-3; IV=intravenous; PO=per os, orally;
Trastuzumab RA=receptor antagonist.
a May omit days 2 and 3 if aprepitant is given.
Minimal < 10 Bevacizumab
bFor patients receiving a combination of an anthracycline and cyclophosphamide.
Bleomycin
Source:Adapted with permission from J Clin Oncol. 2006;24:2932.
Busulfan c Adapted from K.Jordan, etal. Eur J Pharmacology, October 2013, in combination with
2-Chlorodeoxyadenosine current NCCN guidelines (Antiemesis:Version I.2014, NCCN.org).
Fludarabine
Rituximab
Vinblastine
Intestinal Obstruction
Vincristine Intestinal obstruction from external compression or internal occlu-
sion by tumor frequently presents with nausea and vomiting. The
Vinorelbine
most common cancers associated with bowel obstruction are gas-
a At doses > 1 gm, methotrexate has at least moderate emetogenic potential. Adapted tric, ovarian, and colon cancer. In addition to tumor progression,
with permission from Journal of Clinical Oncology. 2006;24(18):29322947. 2008 bowel obstruction may result from adhesions or post-radiation
American Society of Clinical Oncology. All rights reserved.
fibrosis. The receptors involved in the nausea and vomiting associ-
ated with bowel obstruction include peripheral receptors in the gut
initial steps are ineffective, agents to increase gastric motility (H1, acetylcholine) as well as D2 receptors in the CTZ. The patho-
(i.e., metoclopramide) may be helpful. Development of nausea a physiology is multifactorial. Lumen occlusion prevents movement
week after initiation of opioid therapy suggests an alternate etiol- of intestinal contents from passing distally. The resultant accumu-
ogy for the nausea. Examples include an electrolyte abnormality, lation of contents and unabsorbed secretions produces distention
another offending drug, or constipation (another common opioid and colic. The bowel also continues to contract in an uncoordi-
side effect). nated fashion, resulting in cramping and pain.

Symptoms of obstruction differ based on the level of obstruc-
tion. With proximal obstruction (i.e., stomach, duodenum, or
jejunum), patients develop nausea early and usually have high
volume emesis. Nausea usually persists even after an episode of
emesis. Obstruction at distal levels presents more classically with
pain and colic rather than nausea and vomiting.
Nausea and vomiting associated with obstruction is usually
relieved with insertion of a nasogastric tube as well as fluid and
electrolyte replacement. This may be a bridging step to more
definitive therapy, such as surgery, a stent, or venting gastrostomy,
depending on the overall goals of treatment. Palliative surgery
may be an option in patients with good performance status, lim-
ited intra-abdominal tumor, minimal ascites, and a single site of
obstruction.23 For those patients who are not surgical candidates
and who have a single site of obstruction, stent placement may
effectively relieve the obstruction. For patients with multiple sites
of obstruction, a venting gastrostomy may provide the best pallia-
tion of nausea, vomiting, and pain.
Pharmacologic management of symptoms of nausea and
vomiting from malignant bowel obstruction is the primary
therapy for patients who cannot undergo a more definitive
intervention. Recommended drugs include steroids, octreotide,
anti-cholinergics, and promotility agents such as metoclopramide
(if the obstruction is partial). Steroids work by reducing peritu-
moral edema and increasing water and salt absorption. Octreotide
inhibits the secretion of gastric acid, pepsin, and pancreatic
enzymes (thus decreasing overall fluid output), and peristalsis.
Anticholinergics also have antisecretory effects and decrease con-
tractions and tone.24
Radiation-Induced Nausea and Vomiting
Management of radiation-induced nausea and vomiting includes
both prevention and treatment. The incidence and severity of
radiation-induced nausea and vomiting depends on the radiation
site, port size, and dose.
Total body irradiation is associated with the highest risk
of radiation-induced nausea and vomiting. Radiation ther-
apy that excludes the abdominal cavity has a low risk of nau-
sea and vomiting. 25 Radiation-induced nausea and vomiting
result from both central and peripheral mechanisms. Serotonin
(5-hydroxytryptamine, 5-HT) is released from enterochro-
maffin cells located in the GI mucosa in response to radiation.
Serotonin interacts with 5-HT3 receptors peripherally on vagal
afferent neurons and centrally in the nucleus tractus solitarius,
eliciting the vomiting reflex.26 Guidelines for the treatment of
radiation-induced nausea and vomiting are shown in Table 26.4.
Central Nervous SystemRelated Nausea and Vomiting
Parenchymal brain tumors, whether primary or metastatic, can
increase intracranial pressure and cause nausea and vomiting.
Symptoms frequently associated with increased intracranial
pressure include morning headaches, diplopia, and cranial nerve
abnormalities.
Increased intracranial pressure leads to meningeal irritation,
which activates meningeal mechanoreceptors that stimulate the
vomiting center. This is also the mechanism of the nausea and
vomiting secondary to meningeal irritation, such as occurs with
leptomeningeal invasion or carcinomatosis. While the nausea and
vomiting associated with parenchymal brain metastases generally
Chapter26 nausea and vomiting 203
Table26.4 Emetic Risk Category Related to Area of the Body
Receiving Radiation and Treatment Guidelines
Emetic Risk Area Receiving Radiation Anti-emetic Guideline
Category
High Total body irradiation Before each fraction:5-HT3
receptor antagonist +
dexamethasone
Moderate Upper abdomen Before each fraction:5-HT3
receptor antagonist
+/ dexamethasone
Low Lower thorax, pelvis, As needed:5-HT3 receptor
cranium (radiosurgery), antagonist
craniospinal
Minimal Head and neck, extremities, As needed:dopamine receptor
cranium, breast antagonist or 5-HT3 receptor
antagonist
Abbreviation:5-HT3=5-hydroxytryptamine-3.
Adapted with permission from J Clin Oncol. 2006;24:2932.
respond to steroids, the nausea and vomiting due to menin-
geal infiltration by tumor are often difficult to control. Steroids
and radiation therapy remain the most frequently prescribed
therapy.27 Acentrally acting anti-emetic may also be useful. As
patients with leptomeningeal disease are generally less responsive
to drug therapy, alternative non-pharmacologic interventions,
such as CSF drainage via shunt placement, may be considered if
clinically indicated.
TREATMENT
Pharmacologic
A pathogenesis-based treatment approach manages nausea and
vomiting most effectively. A systematic approach to treatment
minimizes the potential for overmedication and polypharmacy.
The major classes of anti-emetics are D2 antagonists, 5-HT3
antagonists, selective NK1 antagonists, antihistamines, and
anticholinergics.
Dopamine 2 (D2) receptor antagonists are among the oldest
anti-emetics. There are five groups of dopamine receptors (D1
D5). D2 is classically implicated in the pathogenesis of nausea and
vomiting. D2 antagonists block CTZ-mediated nausea. Recent
animal studies support a role for D3 in the generation of nau-
sea from a central mechanism.28 D2 receptor antagonists are the
agents of choice for acute CINV with low-risk emetogenic regi-
mens, opioid-induced nausea and vomiting, and in the setting of
gastrointestinal dysmotility. The choice of a particular D2 recep-
tor antagonist is generally based on the symptoms associated with
the nausea. For example, a patient with constipation, early satiety,
or dyspepsia would benefit from metoclopramide and its promo-
tility effects, whereas a patient who is anxious, agitated, or con-
fused and has nausea would benefit most from haloperidol.
More than seven 5-HT receptors have been identified. The
first 5-HT3 receptor antagonists were introduced in the 1990s
and dramatically changed the management of nausea and vom-
iting. The receptor with the highest frequency in the gut and in
the nucleus of the tractus solitarius is 5-HT3. It is the primary
204 Section V management of specific physical symptoms
target for 5-HT3 receptor antagonists. These agents are used to
prevent radiation-induced nausea and vomiting and to prevent
acute nausea and vomiting associated with moderately to highly
emetogenic chemotherapy. The newest generation drug in this
class is palonosetron. It has a longer half-life and greater affinity
for the 5-HT3 receptor than other 5-HT3 receptor antagonists.
While most of the 5-HT3 antagonists are administered through
the intravenous, oral, or sublingual route, new modalities through
the transcutaneous route using granisetron (Sancuso) have been
developed for patients receiving moderate to high emetogenic che-
motherapy. With the transdermal system, a single patch can be worn
for up to seven days, providing steady plasma levels of the medica-
tion without the need for repeat injections or repeated oral doses,
bypassing the need for medication compliance. Studies have shown
that transdermal granisetron is non-inferior to its oral counterpart,
and offers an alternative administration route for patients unable to
take oral medications or who have questionable absorption.44
Tachykinins, such as substance P, exert their anti-emetic effect
centrally at NK receptor antagonists that cross the blood-brain
barrier, decreasing both acute and delayed chemotherapy-induced
emesis. These agents have their greatest impact on delayed nausea
and vomiting from chemotherapy (see Table 26.2).
The initial clinical studies of the tachykinins investigated the
addition of the NK-1 receptor antagonist aprepitant to a 5-HT3
receptor antagonist plus dexamethasone prior to cisplatin-based
chemotherapy. The study demonstrated improved control of acute
and delayed emesis using the aprepitant regimen.46
Two additional randomized, double-blind, multicenter stud-
ies in which patients receiving cisplatin were randomly assigned
to receive standard prophylactic therapy with ondansetron and
dexamethasone prior to chemotherapy, with dexamethasone
given post-chemotherapy on days 2 through 4, versus ondanse-
tron, dexamethasone, and aprepitant prophylaxis with aprepi-
tant on days 2 and 3 post-chemotherapy. The clinical response of
participants in the aprepitant group was higher in both the acute
and delayed period, compared to standard therapy.47 Based on
the findings above, aprepitant received approval for use by the US
Food and Drug Administration (FDA) in 2003.
Fosaprepitant is a water-soluble pro-drug of aprepitant that,
when administered intravenously, is converted to aprepitant.
Phosphatase enzymes subsequently convert fosaprepitant to aprepi-
tant within 30 minutes, leading to the medications pharmacologic
effects.48 The use of fosaprepitant as a single agent had a similar
effect on acute emesis induced by cisplatin therapy compared to
ondansetron, with superior control of delayed emesis. Subsequent
studies have shown that a single 150 mg dose of IV fosaprepitant
for cisplatin-based chemotherapy was non-inferior to a 3-day regi-
men using aprepitant for the prevention of CINV.49 Fosaprepitant
gained FDA approval for management of CINV in 2008.
Casopitant, a novel piperazine derivative, has been investigated
for the use of CINV, postoperative nausea and vomiting, anxi-
ety, and insomnia. Phase III studies have been completed, with
reportedly no serious adverse events reported, though in subse-
quent application to the FDA for approval some toxicity issues
were raised, and there has since been no further reported devel-
opment of casopitant.48 Rolapitant and netupitant are additional
NK-1 receptor antagonists currently undergoing phase III trials.
Corticosteroids have been used as anti-emetics for several
decades. Their mechanism of action is poorly understood, but
there are several proposed hypotheses. Steroids may produce their
anti-emetic effect by decreasing 5-HT release or antagonizing the
5-HT3 receptor. In addition, they may activate the glucocorticoid
receptor in the medulla and possibly increase drug levels of other
anti-emetics.29 Steroids are the treatment of choice for nausea and
vomiting secondary to increased intracranial pressure and are
useful adjunctive therapy for the treatment of malignant bowel
obstruction. The most widely used corticosteroid for management
of nausea is dexamethasone, mainly due to its low mineralocorti-
coid effect. It is effective for both acute and delayed emesis37 and
can be administered intravenously (IV), intramuscularly (IM), or
orally, in dosages ranging from 8 to 40 mg. Dexamethasone can
be given as a single dose in the morning due to its long tissue half-
life (> 24 hours). Long-term use, however, is limited by side effects,
such as immunosuppression, muscle weakness, cataracts, adrenal
suppression, mood instability, psychosis, and effects on the bones
(such as avascular necrosis), to name a few.
Cannabinoids exert anti-emetic effects by agonism of CB-1
receptors. Dronabinol and nabilone are the two commercially
available agents in the United States. They are approved for the
treatment of nausea refractory to standard anti-emetics, though
their efficacy appears about equal to that of prochlorperazine. 30
These drugs are reportedly more effective in patients previously
exposed to cannabinoids.31 Impaired psychomotor function and
the psychoactive effects (dizziness, dysphoria, hallucinations) of
cannabinoids limit their usefulness, particularly in older patients.
Arecent English literature review of nabilone for the treatment of
CINV noted no significant added benefits over the use of 5-HT3
antagonists alone.50
The benzodiazepines, including lorazepam, midazolam, and
alprazolam, are valuable adjuncts for the management of anxiety
as well as nausea, primarily through treatment of anticipatory
nausea and vomiting (ANV) associated with chemotherapy. As
previously described, poorly controlled nausea and vomiting dur-
ing prior sessions of chemotherapy and multiple cycles of treat-
ment increase the risk of developing ANV. Anxiety and profound
emotional experiences can trigger nausea through effects on
GABA receptors. Benzodiazepines mediate their effects through
the higher cortical CNS structures and brainstem, causing anx-
iolytic and sedative effects to help mitigate symptoms. Single
agent use, however, does not produce significant intrinsic anti-
emetic activity, restricting their use as an adjunct to additional
therapies.51 Lorazepam can be administered in oral, IV, IM, and
sublingual forms, with doses ranging from 0.5 to 3 mg. Sedation,
confusion, and respiratory depression are among the major side
effects. Ideally, the most effective prophylactic regimen should be
given prior to the first cycle of chemotherapy as the best preven-
tion for ANV. Behavioral therapy is a consideration for patients
who develop continued anticipatory CINV despite adequate pro-
phylactic measures.
Medications such as scopolamine, which exert their effect
though anticholinergic mechanisms, can be valuable in the man-
agement of vestibular nausea and vomiting. Patients will often
have the complaint of nausea being triggered during periods
of sudden head movement or worsened by ambulation, sug-
gesting stimulation of the vestibular apparatus triggered by
rotational movement. The vestibular system acts through cho-
linergic muscarinic receptors within the vomiting center, pro-
voking nausea and vomiting. Scopolamine has been effectively
 Chapter26 nausea and vomiting 205

used in the treatment of nausea in cancer patients with nausea
related to motion.52 Table 26.5 provides a list of commonly used
anti-emetics.
ALTERNATIVE AND EMERGING
THERAPIESFOR THE MANAGEMENT
OFNAUSEA AND VOMITING
The management of nausea and vomiting continues to be a com-
plex challenge. Thus, there are a number of ongoing studies and
case reports utilizing alternative agents for management of refrac-
tory symptoms, as well as a number of ongoing trials designed to
find new therapeutic options.
Atyical Antipsychotics
Olanzapine, a thiobenzodiezepine, is an atypical antipsychotic
commonly used in the management of schizophrenia and
bipolar disorder. Olanzapine exerts its effects via a number of
neurotransmitters and neuroreceptors, including 5-HT3, dopa-
mine, histamine, muscarinic receptors, and catecholamines at
alpha-1 adrenergic receptors. Given the broad and potent inhibi-
tory effect of olanzapine at a number of receptors, it has been
recently evaluated for the treatment of refractory nausea and
emesis. Several studies have demonstrated the efficacy of olan-
zapine in the treatment for both acute and delayed CINV, with
an overall success rate of 70%. 38 A recent randomized phase
III trial comparing prophylaxis with olanzapine versus aprepi-
tant for the treatment of CINV showed no statistical difference
in complete response rate and better control of nausea with use
of olanzapine in both the delayed and overall periods. 39 Chronic
use of olanzapine is associated with weight gain and the develop-
ment of type 2 diabetes. Sedation, dry mouth, and edema were
the most commonly noted side effects. 38 Palliation of symptoms
from nausea induced by opioid use or partial bowel obstruction

Table26.5 Common Anti-emetics, Indications, Adverse Effects, Dose, Route

Drug Indications Adverse Effectsa Dosing/Route

D2 receptor antagonists
Reglan Gastroparesis Drowsiness 12 mg/kg IV or 0.5 mg/kg PO
Chemotherapy induced EPS symptoms
Anticholinergic effects
Prochlorperazine Opiate induced Hyperprolactinemia 510 mg q 6 hours PO/IV
Chemotherapy induced Neuroleptic malignant syndrome
Dystonic reactions
Haldol Opiate induced Esophageal spasm and colic in GI obstruction 0.23 mg IV/PO/SQ q812 hours
Chemotherapy induced
NK receptor antagonists
Aprepitant/ Delayed N and V HEC/MEC Fatigue, dizziness, constipation, diarrhea 125 mg PO
Fosaprepitant 115 mg IV (fosaprepitant)
Repeat doses at 80 mg PO/IV
5-HT3 receptor antagonists
Ondansetron MEC/HEC Headache 48 mg PO/IV q 812 hours (up to 24 mg on
Diarrhea day 1 of HEC)

Granisetron Constipation 1 mg PO bid

Fatigue (2 mg PO before day 1 of MEC or
Transient transaminitis HEC)
Dolasetron 100 mg PO/IV daily
Tropisetron 35 mg PO/IV daily
Palonosetron 0.25 mg x1 on day 1
Corticosteroids
Dexamethasone MEC/HEC Suppression of the hypothalamic pituitary axis Day 1
Cushing syndrome w/aprepitant 12 mg IV/PO
Myopathy w/o aprepitant 20 mg for HEC IV or PO, 8 mg
Osteoporosis for MEC IV or PO
Peptic ulcers/GERD/dyspepsia Day 23
8 mg days 24 for HEC
8 mg days 23 for MEC
(continued)
206 Section V management of specific physical symptoms

Table26.5(Continued)

Drug Indications Adverse Effectsa Dosing/Route

CB1 receptor agonists
Nabilone Mild chemotherapy-induced N Sympathomimetic activity 12 mg PO q 12 hours as needed
and V Labile effects on mood/cognition/appetite/
perception
Dronabinol Mild chemotherapy-induced N Seizures 5mg/m2 q 24 hours PO
and V
Benzodiazepines
Lorazepam ANV Sedation, respiratory depression, confusion 0.53 mg q46h prn PO, IV, IM, sublingual
Anxiety related N and V
Anticholinergics
Scopolamine Vestibular related Sedation, xerostomia, blurred vision 1 patch q 3days prn (transdermal)
N and V
Atypical antipsychotics
Olanzapine CINV, including delayed Xerostomia, DM, dizziness, weight gain, 510 mg/day PO; available in oral dissolving
increased appetite tablet;
IM; may be safe to give subcutaneously
a Adverse effects reflects common reactions and is not inclusive of all possible adverse reactions.

Abbreviations:CB1=cannabinoid receptor; D2=dopamine; EPS=extrapyramidal side effects; GERD=gastroesophageal reflux; GI=gastrointestinal; HEC=high emetogenic
chemotherapy; IV=intravenous; MEC=moderate emetogenic chemotherapy; NK=substance P; PO=per os, orally.

have also been reported.38 Typical starting dosage is 5 to 10 mg Octreotide

per day. Olanzapine is available as an oral dissolving tablet, and
can be given subcutaneously in patients unable to take medica-
tions by mouth.
Gabapentin
Gabapentin is a gamma aminobutyric acid (GABA) ana-
logue traditionally used for the treatment of neuropathic pain,
post-herpetic neuralgia, and seizures. While structurally related
to GABA, gabapentin does not directly interact with the GABA
receptor. Hence, its exact mechanism of action is unknown.48
There is limited data from a small study suggesting a reduction in
delayed nausea with the use of gabapentin when used in combina-
tion with traditional anti-nausea agents.40 A second study test-
ing the addition of gabapentin to ondansetron, dexamethasone,
and ranitidine for the prevention of CINV in patients receiving
highly emetogenic chemotherapy noted less nausea in the patient
arm receiving gabapentin, though nausea was not significantly
improved.41 Further study is required to better determine the effi-
cacy and appropriate use of this agent.
Mirtazapine
Mirtazapine is an antidepressant that interacts with multiple neu-
rotransmitter systems, including postsynaptic 5-HT2 and 5-HT3
serotonin receptors. Sedation and appetite stimulation also occur
through histamine blockade. Given its multiple sites of action,
mirtazapines potential to impact multiple symptoms in cancer
patients, including nausea, has been investigated, though signifi-
cant improvement in nausea has not been demonstrated.42
Octreotide is a somatostatin analog that significantly reduces
gastric secretions by inhibiting the effects of vasoactive intesti-
nal polypeptide activity. Octreotide is generally well tolerated. In
one study, treatment with octreotide decreased mean nasogastric
aspirates in patients with ovarian carcinomatosis, from over 1.5
liters to less than 50 cc per day.43 This decrease in gut fluid volume
can result in significant improvements in nausea and vomiting in
patients with bowel obstruction. Octreotide is available in intra-
venous and subcutaneous forms, and long-acting depo versions
of the medication are available with single injections lasting up
to 1month.
NON-PHARMACOLOGIC TREATMENT
OFNAUSEA AND VOMITING
Non-pharmacologic approaches to control nausea and vomiting
include, but are not limited to, acupuncture, behavioral treatment,
and nutritional interventions.
Acupuncture
A 1997 National Institutes of Health (NIH) consensus state-
ment on acupuncture recognized the efficacy of needle acu-
puncture for adult postoperative and chemotherapy-induced
nausea and vomiting.32 This set the stage for additional research
in this area. Arecent Cochrane review of eleven acupuncture tri-
als (N=1247) concluded that acupuncture point stimulation of
all methods (needles, acupuncture trials, electrical stimulation,
magnets, or acupressure) reduces the incidence of acute vomiting,

but not nausea severity. However, when evaluated by modality,
self-administered acupressure had a protective effect on the first
day of nausea. Electroacupuncture (acupuncture supplied with
electricity) reduced the incidence of acute vomiting while manual
acupuncture did not. All of these trials, except the electroacu-
puncture trials, prescribed state-of-the-art anti-emetics.33
Acupuncture techniques have not yet been evaluated for the
treatment of nausea and vomiting induced by radiation therapy,
opioids, or bowel obstruction.
Behavioral Treatment
Behavioral therapies have a role in the treatment and prevention
of nausea and vomiting. Examples of behavioral interventions
include progressive muscle relaxation training (PMRT), system-
atic desensitization, hypnosis, and cognitive distraction. PMRT
instructs patients to progressively stretch and relax specific mus-
cle groups in combination with guided imagery. This appears to
have its greatest benefit after chemotherapy is administered. It is
less effective for anticipatory symptoms. Systematic desensitiza-
tion, a method commonly used to train patients to overcome pho-
bias, is helpful for control of ANV. Patients are taught to recreate
the situation that causes the nausea (i.e., the infusion center) in
their mind, while they are in a state of complete relaxation. This
teaches patients to recondition themselves to be relaxed, instead
of nauseated, in response to that stimuli. Hypnosis effectively pre-
vents ANV in children but is less useful for adults. This may be
because children are more easily hypnotized. Finally, cognitive
distraction (i.e., video games) appears to be a cost-effective way
to reduce ANV.34
Nutrition
Nutritional interventions have also been explored for their impact
on nausea and vomiting. One trial randomized patients to receive
a normal diet versus a diet high in protein (protein powder)
and ginger (powdered ginger root). Patients who received the
high protein/ginger diet experienced less nausea and used fewer
anti-emetics than the control group. Delayed nausea and vomiting
were also reduced in the treatment group.35 Aphase III, random-
ized trial of 576 patients with cancer compared the use of 0.5 g, 1
g, and 1.5 g of ginger twice per day compared to placebo for the
prevention of nausea within the first 24 hours of chemotherapy.
Patients continued to receive standard prophylaxis with a 5-HT3
receptor antagonist, with the addition of ginger or placebo start-
ing three days prior to treatment with chemotherapy, with contin-
uation until six days post-treatment. While acute nausea seemed
to improve, there was no significant effect on delayed nausea and
vomiting. This suggests that ginger may be a useful adjunct in the
treatment of chemotherapy-related nausea and vomiting.54
CONCLUSIONS
Nausea and vomiting, distressing symptoms for patients with can-
cer, occur across the trajectory of disease, from diagnosis, through
treatment, to end-of-life care. The successful management of nau-
sea and vomiting can be complicated, but is critical to prevent sig-
nificant deterioration of quality of life for both patients and their
families. Careful evaluation of the patient and awareness of the
pathophysiology of nausea and vomiting allow the development of
a systematic, targeted approach to treatment. Identification of the
Chapter26 nausea and vomiting 207
etiology of these symptoms allows clinicians to tailor therapy to a
specific cause through antagonism of the offending receptors. This
helps ensure the most effective relief of symptoms in the majority
of cases.
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 CHAPTER27
Fatigue
Yesne Alici, Julienne E.Bower, and William S.Breitbart
INTRODUCTION
Fatigue is a highly prevalent and distressing symptom of can-
cer, associated with decreased quality of life, as well as sig-
nificant psychological and functional morbidity.16 Fatigue in
cancer patients has been significantly associated with depression,
hopelessness, and overall psychological distress.7 Fatigue has
been shown to predict desire for hastened death among cancer
patients.8 Patients with cancer perceive fatigue as the most dis-
tressing symptom associated with cancer and its treatment, more
distressing than pain, nausea, and vomiting. 3 As outlined in
the National Comprehensive Cancer Network (NCCN) Practice
Guidelines for Cancer-Related Fatigue,9,10 fatigue most com-
monly occurs with other symptoms, such as pain, distress, ane-
mia, and sleep disturbances; thus cancer patients presenting with
fatigue should be screened for all these symptoms.911 Despite its
impact on patients and their caregivers, cancer-related fatigue is
underreported, underdiagnosed, and undertreated.9,10 As grow-
ing attention is given to symptom management and quality of
life in cancer patients, clinicians treating such patients should
be familiar with major issues in the assessment and management
of fatigue. This chapter reviews the definition, prevalence, and
assessment of cancer-related fatigue, as well as evidence-based
strategies for treatment.
DEFINING CANCER-RELATED FATIGUE
Fatigue is a poorly defined symptom that may involve physical,
mental, and motivational components. Cancer-related fatigue
is defined by the NCCN9,10 practice guidelines as a distressing,
persistent, subjective sense of physical, emotional, and cognitive
tiredness or exhaustion related to cancer or cancer treatment that
is not proportional to recent activity and interferes with usual
functioning. Cancer-related fatigue is more severe and more
distressing than fatigue experienced by healthy individuals and
is less likely to be relieved by rest.9,10 Recognizing the need for
a standardized definition of fatigue, a group of expert clini-
cians 4 proposed a set of diagnostic criteria, which are included
in the tenth edition of International Classification of Diseases
(ICD-10-CM) (Box 27.1). A standardized interview guide has
been designed and validated for use in identifying patients with
cancer-related fatigue.12
PREVALENCE OF CANCER-RELATED
FATIGUE
The reported prevalence of cancer-related fatigue ranges from
4% to 100%, depending on the specific cancer population stud-
ied and the methods of assessment.13,14 Fatigue is present at the
time of diagnosis in approximately 50% of patients with cancer.15
Fatigue occurs in up to 75% of patients with bone metastases, and
approximately 60%96% of patients undergoing treatment for
cancer report fatigue.16 Asurvey of 1569 cancer patients showed
that fatigue is experienced by 80% of individuals who receive
chemotherapy and/or radiotherapy.17 Female patients, younger
and unemployed patients, and those with higher levels of depres-
sion experienced more fatigue.17 Anational survey of 419 cancer
patients with various cancers, at various stages of illness and treat-
ment, noted that more than 78% of patients experienced fatigue
during the course of their disease and treatment. Thirty-two per-
cent of patients experienced fatigue daily, and 32% felt that fatigue
significantly affected their daily routines. Sixty-one percent of
patients said that fatigue affected everyday life more than pain. 3
Chemotherapy, radiation therapy, and biologic and hormonal
therapies have been shown to exacerbate fatigue.9 Fatigue was
estimated to be a distressing symptom in up to 67% of hospital-
ized and ambulatory prostate cancer patients.18
Fatigue is a disruptive symptom months or even years after the
completion of cancer treatment, which ranges from 17% to 53%
in different prevalence studies, depending on the diagnostic crite-
ria used to define fatigue.10,13,19,20 Asystematic review of fatigue
among breast cancer survivors concluded that survivors experi-
enced significant fatigue up to five years after completion of adju-
vant chemotherapy.21
Fatigue is most common among cancer patients in palliative
care settings; it is reported by 84%100% of patients in palliative
care units.22,23
As evidenced by the prevalence studies, fatigue is a common
symptom in cancer patients and survivors of cancer, from diagno-
sis through all stages of treatment and beyond.
PATHOPHYSIOLOGY
The exact mechanisms involved in cancer-related fatigue are
unknown. Studies have focused on understanding factors that
210 Section V management of specific physical symptoms
Box 27.1 ICD-10 Criteria for Cancer-Related Fatigue
A.Six (or more) of the following symptoms have been present
every day or nearly every day during the same two-week
period in the past month, and at least one of the symptoms
is (A1) significant fatigue:
A1.Significant fatigue, diminished energy, or increased
need to rest, disproportionate to any recent change in
activity level
A2. Complaints of generalized weakness or limb heaviness
A3. Diminished concentration or attention
A4.Decreased motivation or interest to engage in usual
activities
A5. Insomnia or hypersomnia
A6. Experience of sleep as unrefreshing
A7. Perceived need to struggle to overcome inactivity
A8.Marked emotional reactivity (e.g., sadness, frustra-
tion, or irritability) to feeling fatigued
A9.Difficulty completing daily tasks attributed to feeling
fatigued
A10. Perceived problems with short-term memory
A11. Post-exertional malaise lasting several hours
B.The symptoms cause clinically significant distress or impair-
ment in social, occupational, or other important areas of
functioning.
C.There is evidence from the history, physical examination, or
laboratory findings that the symptoms are a consequence of
cancer or cancer therapy.
D.The symptoms are not primarily a consequence of comorbid
psychiatric disorders, such as major depression, somatiza-
tion disorder, somato-form disorder, or delirium
Adapted from Cella D, Peterman A, Passik S, etal. Progress toward
guidelines for the management of fatigue. Oncology (Williston Park).
1998;12:369377.
contribute to fatigue, including the cancer itself, cancer-related
treatments, and a variety of physical and psychological comor-
bidities (e.g., anemia, pain, depression, anxiety, cachexia, sleep
disturbances, and immobility).9,10 Production of cytokines,
abnormal accumulation of muscle metabolites, changes in neu-
romuscular function, abnormalities in adenosine triphosphate
(ATP) synthesis, serotonin dysregulation, disruption of the
hypothalamic-pituitary-adrenal axis, modulation of the circadian
rhythm, and vagal nerve activation have been proposed as pos-
sible mechanisms in the development of fatigue.2426
To date, the mechanism that has garnered the most empirical
attention and support is elevated production of cytokines involved
in inflammation. The possibility that inflammatory processes may
be involved in the etiology of cancer-related fatigue draws from basic
research on neural-immune signaling, which has demonstrated
that peripheral inflammatory cytokines can signal the central ner-
vous system to generate symptoms of fatigue and other behavioral
changes.27 In the cancer context, investigators have proposed that
tumors and the treatments used to eradicate them can activate the
pro-inflammatory cytokine network, leading to symptoms of fatigue
via cytokine signaling in the central nervous system.28,29 Indeed,
studies have documented an association between fatigue and elevated
inflammatory markers in cancer patients during and after treat-
ment.30 The association between inflammation and post-treatment
fatigue has been consistently demonstrated in breast cancer survi-
vors, and similar associations have been observed in ovarian and
testicular cancer survivors. Astudy comparing breast cancer sur-
vivors with and without fatigue (n=20 in each group) found sig-
nificantly higher levels of interleukin-1 receptor antagonist, soluble
TNF type II, and higher numbers of T lymphocytes among breast
cancer survivors with fatigue, suggesting a chronic inflammatory
process involving the T-cell compartment in this group of patients.31
The hypothesis that inflammation may contribute to cancer-related
fatigue is further supported by research showing that variations in
inflammation-related genes are associated with fatigue in cancer
patients, including IL1, IL6, and TNF.30,3235 The role of cytokines in
fatigue24 has led researchers to consider cytokine-antagonist drugs,
such as tumor necrosis factor (TNF) receptor etanercept, TNF-
antagonist thalidomide, to improve the tolerability of chemotherapy
regimens and potentially to treat fatigue and cachexia in cancer
patients.3638 Genetic variables have also been implicated to play a
role in the development of fatigue among cancer patients. Advanced
colorectal cancer patients with two variant forms of the dihydropy-
rimidine dehydrogenase (DPYD) genean enzyme that is involved
in the breakdown of excess nucleotides involved in DNA, RNA, and
ATP productionwere significantly less likely than those patients
with a form of the gene known as DPYD*5 to report fatigue follow-
ing treatment with a chemotherapy regimen of 5-fluorouracil, irino-
tecan, and oxaliplatin.39
ASSESSMENT OF CANCER-RELATED
FATIGUE
All cancer patients should be screened for the presence and severity
of fatigue at their initial visit, at regular intervals during and fol-
lowing cancer treatment, and as clinically indicated.9,10 The NCCN
practice guidelines on cancer-related fatigue recommend the use of
numerical self-report scales or verbal scales to assess the severity of
fatigue. As fatigue is a symptom that is perceived by the patient, like
pain, it is most accurately described by self-report. If the severity
is measured as moderate or severe (a score of 4 or more on a scale
of 0 to 10, with higher numbers indicating increased severity), the
following are recommended:a focused history and physical exami-
nation; evaluation of the pattern, onset, and duration of fatigue;
evaluation of associated symptoms; and evalutation of interfer-
ence with normal functioning.9,10 Description of patient behavior
by family members and other caregivers is an important part of
assessment among children and elderly patients. Precipitating fac-
tors, such as acute physical and psychological stresses, should be
identified, as should perpetuating factors such as physical inactiv-
ity and ongoing psychological or social stresses. Age specifications
have been included in the NCCN practice guidelines for screening
fatigue and assessing its severity, highlighting the importance and
variability of fatigue across the lifespan.9,10
Assessment of Etiologies
The etiologies of fatigue are complex and varied, including tumor
byproducts, opioids or other drugs (such as antidepressants, anti-
psychotics, anti-epileptics, -blockers, benzodiazepines, anti-
histamines), hypogonadism, hypothyroidism, cachexia, anemia,

Box 27.2 Etiologies of Cancer-Related Fatigue
Pre-existing conditions
Congestive heart failure, chronic obstructive pulmonary
disease
Direct effects of cancer, tumor burden
Effects of cancer treatment
 Surgery, radiation therapy, chemotherapy, biological
therapies
Psychological factors
Depression, anxiety
Immobility
Sleep disturbances (insomnia, excessive daytime sedation with
or without narcolepsy, restless leg syndrome, obstructive sleep
apnea)
Cancer-related symptoms
Pain, nausea
Conditions related to cancer or its treatment
Anemia, dehydration, malnutrition, infections, electrolyte
abnormalities, cytokine production, myopathy
Medications and drugs
Opioid analgesics, psychotropic agents, -blockers, alcohol
malnutrition, pain, myopathy, nausea, hormonal therapy,
chemotherapy, radiation therapy, bone marrow transplantation,
and treatment with biological response modifiers (Box27.2).2,7,9,10,40
Potentially reversible causes of fatigue (such as pain, emotional dis-
tress, sleep disturbance, anemia, hypothyroidism) should be identi-
fied and treated, and non-essential centrally acting drugs (including
prescription drugs, over-the-counter medications, and supple-
ments) should be eliminated.9,10 Clinicians should ask and examine
for alcohol, prescription, and illicit drug misuse. Clinicians should
consider the possibility of depression due to its high prevalence in
patients with cancer, and provide treatment if warranted.9,10 If ane-
mia is the main cause of fatigue, the physician should determine
the necessity of a transfusion in severely symptomatic patients.
Clinical trials have shown that patients with anemia have improved
energy and less fatigue after erythropoietin treatment.41 Comorbid
conditions such as cardiac, pulmonary, renal, hepatic, endocrine,
and neurologic dysfunction, and infections should be ruled out as
potential causes of fatigue. Several chemotherapy agents and radia-
tion therapy have been associated with endocrine abnormalities,
including hypothyroidism and hypogonadism.42,43 Assessment of
nutrition (weight, caloric intake) and activity level are also impor-
tant elements of assessment.9,10 Anemia, polypharmacy, cognitive
impairment, malnutrition, and cachexia are the most likely etiolo-
gies of fatigue in palliative care settings.44
Assessment Instruments
Fatigue is not only difficult to define but also difficult to assess and
quantify. Nonetheless, reliable and valid tools for assessment are
crucial for improved management and research progress. Various
standardized self-report scales exist, developed mostly in the con-
text of cancer.45,46 Different scales may measure fundamentally
different aspects or even potentially distinct conceptions of fatigue.
The oldest scales assessing fatigue are dichotomous. These
include Pearson-Byers Fatigue Checklist, Profile of Mood
States, Fatigue and Vigor Subscale, the Fatigue Severity Scale,
Chapter27 fatigue 211
and the European Organization for Research and Treatment
of Cancer Quality of Life Questionnaire Fatigue Subscale.45,46
Other scales have taken a unidimensional approach, namely the
Visual Analogue Scale for Fatigue (VAS-F)47 and the Karnofsky
Performance Status.48 VAS-F is organized into energy and fatigue
dimensions and has good psychometric properties. The Karnofsky
Performance Status probes mainly fatigue consequences. The
limitations of such unidimensional scales include the presence of
confounding factors such as pain.
Multidimensional fatigue instruments have been developed to
assess a wide range of symptom domains that fatigue may pres-
ent with.46 Multidimensional scales include the Fatigue Symptom
Inventory,49 the Brief Fatigue Inventory, 50 the Piper Fatigue
Scale (PFS),45 and the Multidimensional Assessment of Fatigue
(MAF).51 PFS 45 is composed of affective, cognitive, sensory, and
severity subscales. Its major shortcomings include the fact that it
takes a long time to complete and is often difficult for patients to
understand. The MAF51 scale is a revision of the PFS, developed
for use in patients with rheumatoid arthritis.
The Patient-Reported Outcomes Management Information
System (PROMIS), funded by the National Institutes of Health
(NIH), is a system of highly reliable, valid, flexible, precise, and
responsive assessment tools that measure patient-reported health
status, designed to measure common symptoms in clinical tri-
als.52 The PROMIS-Adult Cancer Fatigue Instrument contains a
total of 54 items. There are no short form instruments created spe-
cifically for an adult cancer population.52
Given the multifactorial nature of fatigue, accessory scales (e.g.,
depression scales) and measurements of certain biological param-
eters should be considered, in addition to fatigue assessment tools,
to evaluate a patients fatigue comprehensively.9,10,46 In particular,
the complex interrelationship between fatigue and psychiatric dis-
turbances such as depression and anxiety merits special attention.
Readers are referred to the NCCN guidelines,10 which provide
a comprehensive appendix on fatigue measurement resources for
the selection of instruments to measure cancer-related fatigue.
Fatigue and Depression
Depression is commonly comorbid in patients with cancer-related
fatigue. It is necessary to clarify the relationship between depres-
sion and fatigue to effectively evaluate and treat cancer-related
fatigue. There is considerable overlap of symptoms in these two
conditions, such as decreased energy and motivation, sleep dis-
turbances, diminished concentration, attention, and memory.
Depressive symptoms caused by fatigue are typically less severe,
and patients tend to attribute such symptoms to the consequences
of fatigue. Depression, on the other hand, is more likely present
with hopelessness, feelings of worthlessness and/or guilt, suicidal
ideation, and a family history of depression.9,10,46 It is also impor-
tant to note that fatigue and depression may coexist in the same
patient. In a study of chronic fatigue syndrome in primary care
settings, a temporal relationship was found between depression
and fatigue.26,53 The nature of any causal relationship between
cancer-related fatigue and depression remains unclear. In a study
with 987 lung cancer patients, 33% were found to have depression;
fatigue was identified as an independent predictor of depression.54
In another study of 201 cancer patients, fatigue was found to be
the most common symptom, with 25% of these patients experi-
encing depression.55 Apossible bidirectional relationship between
212 Section V management of specific physical symptoms
fatigue and depression exists, with fatigue occurring as a symp-
tom of depression or with depression occurring because of fatigue,
due to interference with mood, work, and leisure activities.9,10,19,56
Fatigue and Pain
The two most commonly reported symptoms among cancer
patientsfatigue and painshare several common features. Both
symptoms are complex and multidimensional, are largely based
on subjective patient report, and require clear communication
between patients and clinicians for timely recognition and treat-
ment of these symptoms. The coexistence of pain and fatigue has
been shown to worsen the overall symptom experience among
elderly cancer patients, suggesting a synergistic effect between
these two symptoms.57
MANAGEMENT OF CANCER-RELATED
FATIGUE
Given the multidimensional nature of fatigue, a biopsychosocial
approach is recommended for treatment of fatigue. It is criti-
cal that interdisciplinary teams address the needs of individual
patients while implementing the treatment guidelines for man-
agement of cancer-related fatigue.9,10 Interventions can be tailored
based on the stage of illness (e.g., active treatment phase, survivor-
ship, and end of life). Athree-stage hierarchy for the management
of fatigue has been proposed:to identify and treat any underlying
causes of fatigue, to treat fatigue directly, and finally to address
and manage the consequences of fatigue.4
General Strategies for Management of Fatigue
Several strategies have been recommended by the NCCN
practice guidelines for the management of cancer-related
fatigue:self-monitoring of fatigue levels; energy-conserving strat-
egies such as setting priorities, scheduling activities at times of
peak energy, postponing non-essential activities, structuring
daily routine, attending to one activity at a time, and limiting
naps to an hour or less to minimize interference with nighttime
sleep quality; and using distraction (activities such as listening to
music, reading, socializing).9,10
It has also been recommended that practitioners emphasize
finding meaning in the current situation, with the goal of focus-
ing on meaningful interactions and promoting the dignity of the
patient.
Non-pharmacologic Interventions
Non-pharmacological approaches have been recommended by
the NCCN guidelines for the treatment of cancer-related fatigue,
including physical activity and psychosocial interventions.9,10
Mind-body interventions have also shown promise for the treat-
ment of fatigue during and after treatment.
Exercise
A large and growing number of randomized controlled tri-
als have examined exercise as a treatment for cancer-related
fatigue. Meta-analyses of this literature indicate that exercise is
more effective than control in reducing fatigue, with effect size
estimates indicating a moderate effect.58,59 Beneficial effects of
exercise on fatigue have been observed in trials conducted with
patients during and after treatment, indicating that exercise can
be helpful at different stages of the disease trajectory. Aerobic
exercise regimens seem to be particularly beneficial. Guidelines
from the American College of Sports Medicine (ACSM) recom-
mend that cancer patients and survivors engage in at least 150
minutes of moderate intensity aerobic activity each week, consis-
tent with recommendations for the general population.60 ACSM
guidelines further recommend that exercise should be tailored to
the individual cancer patient to account for exercise tolerance and
specific diagnosis, and that patients be closely monitored to safely
progress exercise intensity and avoid injury.
Psychosocial Interventions
A variety of psychosocial interventions for cancer patients, includ-
ing education, stress management, cognitive-behavioral therapy,
and supportive-expressive group therapy, have been examined for
their effects on fatigue. Meta-analyses of psychosocial interven-
tion trials that included fatigue as a primary or secondary outcome
have shown reductions in fatigue relative to control, with effect
size estimates suggesting a small to moderate effect.61,62 During
chemotherapy, individualized interventions that provide fatigue
education and support and address maladaptive fatigue-related
thoughts and behaviors buffer treatment-related increases in
fatigue.63,64 Similarly, a cognitive-behavioral approach to fatigue
management combined with hypnosis buffered treatment-related
increases in fatigue among patients undergoing radiation
therapy.65
Studies conducted with cancer survivors suggest that brief
psychoeducational interventions may be helpful in reducing
fatigue after treatment completion. For example, a brief psycho-
educational video that included information on fatigue (as well
as modeling of physical activity) led to significant improve-
ments in fatigue relative to control.66 More intensive and tar-
geted treatments have shown benefit for survivors with severe
and persistent post-treatment fatigue. These include individual
cognitive-behavioral therapy focused on perpetuating factors for
persistent fatigue 67 and a web-based, tailored educational pro-
gram providing information on cancer-related fatigue as well
as energy conservation, physical activity, sleep hygiene, distress
management, nutrition, and pain control.68
Mind-Body Interventions
There is considerable interest in mind and body interventions
among cancer patients and survivors, and randomized controlled
trials suggest that certain approaches may have beneficial effects
on cancer-related fatigue, including acupuncture, mindfulness,
and yoga. Three acupuncture trials have targeted cancer survivors
with moderate to severe post-chemotherapy fatigue. The largest
of these trials randomized 302 patients to six weeks of acupunc-
ture or usual care, and saw significant improvement in fatigue in
the acupuncture group.69 Acupuncture has also been shown to
be more effective in reducing cancer-related fatigue than real or
sham acupressure,70 although one trial that compared acupunc-
ture to sham acupuncture (where the needles do not penetrate
the skin) found no group differences in fatigue.71 One trial exam-
ined the effect of mindfulness-based cognitive therapy for cancer
survivors with severe fatigue. This intervention focused on help-
ing patients become aware of and inhibit potentially maladaptive
automatic responses related to their fatigue, and led to signifi-
cant reductions in fatigue that were maintained over a six-month
follow-up.72 Beneficial effects on fatigue were also observed in a

small 12-week trial of Iyengar yoga for breast cancer survivors
with persistent fatigue.73 This specialized yoga program led to sig-
nificant improvements in fatigue relative to the health education
control condition, and also had beneficial effects on inflammatory
markers.74
Pharmacologic Interventions
A number of studies examined the efficacy and tolerability of dif-
ferent classes of pharmacologic agents for cancer-related fatigue,
primarily psychostimulants and antidepressants. Ameta-analysis
of pharmacological treatment options for cancer-related fatigue
has concluded that methylphenidate (a psychostimulant) might
be effective for treating fatigue. A significant placebo response
has been observed in randomized trials. There was also evidence
that treatment with hematopoietic agents relieved fatigue due to
chemotherapy-induced anemia.75,76 Following is a review of phar-
macologic interventions used in the treatment of cancer-related
fatigue. Table 27.1 provides a list of commonly used psychostim-
ulants and antidepressants in the treatment of cancer-related
fatigue.
The NCCN guidelines emphasize the importance of tak-
ing into consideration the potential risks associated with
sedative-hypnotic drugs, including severe allergic reactions and
complex sleep-related behaviors, as these medications are com-
monly prescribed to improve sleep quality for patients presenting
with fatigue.10
Psychostimulants
Psychostimulants are drugs that increase alertness and/or moti-
vation and include methylphenidate, dextroamphetamine, and
pemoline (withdrawn from the US market). Methylphenidate and
dextroamphetamine are sympathomimetic drugs. They stimulate
adrenergic receptors directly as agonists and indirectly cause the
release of dopamine and norepinephrine from presynaptic ter-
minals. Dexmethlyphenidate is the d-isomer of methylphenidate
and has a longer duration of action (approximately 6 hours) than
methylphenidate. Psychostimulants are scheduled as controlled
drugs because of their rapid onset of action, immediate behav-
ioral effects, and development of tolerance, which leads to an
increased risk of abuse and dependence in vulnerable individuals.
Existing neuropharmacologic data suggest that methylphenidate
Table27.1 Psychostimulants and Wakefulness-Promoting Agents Used in the Treatment of Cancer-Related Fatigue
Medication Starting Dose
Psychostimulants
Methylphenidate 2.55 mg daily or twice daily
Dextroamphetamine 2.55 mg daily or twice daily
Wakefulness-promoting agents
Modafinil 50100 mg daily
Armodafinil 50150mg daily
Abbreviation:5HT=5-hydroxytryptamine.
a Available in liquid formulations.
Chapter27 fatigue 213
has pharmacokinetic properties that reduce its abuse potential as
compared with stimulant drugs of abuse, such as cocaine.77
Agitation and insomnia are the most common side effects asso-
ciated with the use of psychostimulants. Reducing the dosage
and taking the medication early in the day may help. Rare side
effects include hypertension, palpitations, arrhythmias, confu-
sion, psychosis, tremor, and headache. 36 Methylphenidate and
dextroamphetamine are contraindicated for patients with uncon-
trolled hypertension, underlying coronary artery disease, and
tachyarrhythmias.
Psychostimulants show great promise in the treatment of medi-
cally induced fatigue in patients with cancer, multiple sclerosis,
Parkinsons disease, opioid-induced sedation, and human immu-
nodeficiency virus (HIV).7883 Breitbart and colleagues78 con-
ducted the first randomized, double-blind, placebo-controlled
trial of two psychostimulants for the treatment of fatigue in ambu-
latory patients with HIV disease. They found that both methylphe-
nidate and pemoline (no longer available) were equally effective
and significantly superior to placebo in decreasing fatigue severity
with minimal side effects. Psychostimulants also have been used in
the treatment of fatigue-related conditions, such as pain, depres-
sion, opioid-related sedation, and cognitive impairment. 83,84
Table 27.2 provides a summary of the psychotropic medication
trials for the treatment of cancer-related fatigue. While open-label
studies with psychostimulants have shown improvements in
cancer-related fatigue, placebo-controlled randomized trials have
found a remarkable placebo effect among cancer patients, as well
as improved fatigue scores with psychostimulants. 36,85,86
Wakefulness-Promoting Agents
The US Food and Drug Administration (FDA) approved the use
of wakefulness-promoting agents modafinil and armodafinil in
adult patients with excessive sleepiness associated with narcolepsy,
obstructive sleep apnea, and shift work sleep disorder.87 It has been
used to augment antidepressants in major depressive disorder, and
as an adjunct treatment for bipolar depression.88,89 Compared to
the psychostimulants, modafinil has a novel mechanism of action
and less abuse potential. It is well tolerated and has a good safety
profile. The mechanism of action is largely unknown. It presum-
ably enhances activity in the hypothalamic wakefulness center
(i.e., tuberomammillary nucleus), activates tuberomammillary
Dose Range Comments
530 mg/day, usually divided Longer-acting forms are available Capsule forms can be
as twice daily sprinkled on food
530 mg/day, usually divided Longer-acting formulations are available. Capsule forms
as twice daily can be sprinkled on food
50400 mg daily, may be Favorable side-effect profile
divided as twice daily
150250 mg/day Favorable side-effect profile
Table27.2 Review of Studies with Psychostimulants and Wakefulness-Promoting Agents For Treatment of Cancer-Related Fatigue
Sample
Methylphenidate
Sarhill etal. 200183 Patients with advanced
cancer. Prospective,
open-label design (n=11)
Sugawara etal. Patients with advanced
2002110 cancer. Prospective,
open-label study (n=16)
Schwartz etal. 2002111 Patients with melanoma
receiving interferon.
Prospective, open-label study
(n=12)
Bruera etal. 2003112 Patients with advanced
cancer. Prospective open-label methylphenidate
(n=30) 5 mg every 2 hours with a
Hanna etal. 2006113 Patients with breast cancer,
who were cancer free longer
than 6months but less than
5years. Open-label, phase II
study (n=37)
Bruera etal. 2006114 Patients with advanced
cancer (n=52 in medication
arm, n=53 in placebo arm).
Randomized, double-blind,
placebo-controlled trial
Auret et al. 2009115 RCT
Double blind
(n=50).
Advanced cancer patients
with fatigue in palliativecare
Roth etal. 2010116 Ambulatory patients with
prostate cancer. Randomized,
placebo-controlled, phase III
trial (n=32)
Moraska etal. 2010117 Phase III
Double-blind
RCT.
(n=139 patients undergoing
chemotherapy)
Bruera et al. 201386 N=141 patients with
advanced cancer.
Placebo-controlled RCT for
15days
Intervention Results Comments
Methylphenidate 10 mg twice Decreased fatigue in 9 out More than half of the patients
daily of 11patients, with sedation experienced side effects, such as
and pain improving in some insomnia, agitation, anorexia,
patients nausea, vomiting, and dry mouth.
Methylphenidate 530 mg/day, Decreased fatigue scores Two patients dropped out due to
mean duration of treatment (p=0.01) insomnia. Visual analog scale was
8days used for assessment of fatigue.
Exercise and methylphenidate Decreased fatigue scores Unclear whether the positive
20 mg/day effect was due to exercise or
methylphenidate or both
Patient-controlled Decrease in fatigue, depression, None of the patients discontinued
and overall well-being the medication.
maximum of 4 caps in a day
Methylphenidate 5 mg twice 54% of the patients responded 16% of the patients withdrew from
daily for 6 weeks with a decrease in BFI score of the study due to minor side effects.
more than 2 points.
Patient-controlled Fatigue scores improved both Open-label phase of the study
methylphenidate (5 mg every in placebo and medication arm following the randomized trial
2hours up to 4 caps a day) on day 8. showed continued improvement in
versus placebo for a total of fatigue.
7days
Dexamphetamine 10 mg PO There was no significant No significant side effects were
bid or placebo for 8days difference in fatigue noted with dexamphetamine.
improvement of quality of life
between groups.
Methylphenidate 530 mg/day 73% of patients in the 43% men in the methylphenidate
versus placebo. intervention group reported group withdrew due to
Up to 15 mg po bid for 8 weeks. clinically significant decrease in cardiovascular side effects.
fatigue vs 23% in the placebo
group.
Methylphenidate sustained No difference in fatigue scores A subset analysis of patients found a
release was observed between the benefit with the psychostimulant in
54 mg/day versus placebo for groups. patients with severe fatigue and/or
four weeks advanced disease (p=0.02).
Placebo, methylphenidate 5 mg Median fatigue scores Grade 3 adverse events did not
every 2 hours up to 20 mg a day, improved from baseline to day differ between methylphenidate and
combined methylphenidate 15 in all groups. There were no placebo.
and a nursing telephone significant differences in the
intervention median improvement in fatigue
among all four groups.
(continued)
 Chapter27 fatigue 215

Table27.2(Continued)

Sample Intervention Results Comments

Escalente etal. 2014118 Double blind, RCT, 4 weeks Sustained release
duration, crossover after methylphenidate 18mg/day
2weeks, among patients with versus placebo
lymphoma, myeloma, breast,
lung, or gastrointestinal
cancers (n=38)
D-methylphenidate
Lower etal. 2009119 Adult patients with
cancer, 2months after
chemotherapy. Randomized,
placebo-controlled, phase III
trial (n=144)
Butler etal. 2007120 Adult patients with primary
or metastatic brain tumors
on radiation therapy.
Double-blind, randomized,
placebo-controlled trial
(n=34 in each arm)
Mar Fan etal. 2008121 Women with breast D-methylphenidate up to
cancer undergoing
adjuvant chemotherapy.
Randomized, double-blind,
placebo-controlled trial
(n=29 on medication; n=28
on placebo)
Modafinil
Morrow etal. 200591 Women with breast cancer,
2years after treatment.
Prospective, open-label study
(n=51)
Kaleita etal. 200692 Adult patients with brain
tumor. Phase III, open-label
trial (n=30)
Jean-Pierre et al. 2010 867 patients undergoing
chemotherapy,
placebo-controlled RCT
D-methylphenidate
1050mg/d for more than
2weeks
D-threo-methylphenidate 15
mg twice daily for 412 weeks
10twice daily for 20140days
Modafinil 200 mg/day for a
month
Modafinil, mean dose 225 mg/
day at week 8, 258 mg/day at
week 12
Modafinil 200 mg per day
versus placebo
Methylphenidate treatment
did not affect patients
worst level of fatigue or
other symptoms. Significant
improvement was noted in
the methylphenidate-treated
patients verbal learning,
memory, visual perception,
analysis, and scanning speed
Medication was found to be
more effective compared to
placebo in improving fatigue
Prophylactic use of
d-threo-methylphenidate did
not result in improvement of
fatigue scores or quality of life
There were no significant
differences between the
FACT-F scores of the
randomized groups.
for presumed d-MPH toxicity.
86% reported improvement
infatigue.
Well-tolerated; mean fatigue
score change at week 8 and
12was significantly higher in
the intervention arm.
There was no difference in
response among patients with
mild to moderate fatigue.
After 4 weeks, 64% of patients
reported that methylphenidate
improved their cancer-related
fatigue, and 58% wanted to continue
treatment.
No significant side effects were
reported in either group.
Researchers concluded that
therapeutic rather than
prophylactic d-methylphenidate
was recommended for patients
undergoing brain RT who develop
fatigue or cognitive dysfunction.
Greater number of patients
discontinued study drug in the
d-MPH arm than the placebo arm;
on the other hand, equal numbers in
each group required dose reduction
Final data analysis has not been
published yet.
Only results from the open-label
extension phase were reported in
this abstract. Final data analysis has
not been published yet.
Toxicity was similar in both arms.
Patients with severe fatigue showed
improvement in fatigue with
modafinil.

Abbreviations: BFI=brief fatigue inventory; d-MPH=dexmethylphenidate hydrochloride; FACT-F=Functional Assessment of Cancer Therapy-Fatigue; RT=radiation therapy.

nucleus neurons that release histamine, and activates other hypo-
thalamic neurons that release orexin/hypocretin.
Modafinil is commonly used for the treatment of severe fatigue
in multiple sclerosis90 and has been studied as a treatment option
for cancer-related fatigue with improvement of fatigue.9193 The
results are supportive of its use among cancer patients with severe
fatigue. Further well-designed, randomized, controlled clinical
trials are necessary to further clarify the role of modafinil and
armodafinil in the treatment of cancer-related fatigue.
Antidepressants
The phenomenological similarities and the possibility of a bidirec-
tional relationship between fatigue and depression have led clini-
cians to consider antidepressants in the treatment of cancer-related
fatigue. The benefits of antidepressant use are not clear in patients
with cancer-related fatigue in the absence of a depressive mood
disorder. Research has suggested a common pathophysiological
mechanism, such as serotonin insufficiency, in the development of
both fatigue and depression.
216 Section V management of specific physical symptoms
Studies have examined the role of paroxetine, 56,94,95 sertraline,96
and bupropion97,98 in the treatment of cancer-related fatigue.
Paroxetine56,94,95 and sertraline96 were effective in improving
fatigue among cancer patients with comorbid depressive symp-
toms. Bupropion was found to be effective and well tolerated in
both depressed and non-depressed cancer patients in open-label
trials.97,98 However, controlled studies are required to determine
whether the effect of bupropion on fatigue is independent of its
antidepressant effects.
In the treatment of underlying depression, selective
serotonin-reuptake inhibitors (SSRIs) are generally better tol-
erated than tricyclic antidepressants in patients with cancer.
Medications should be initiated at lower doses and drugdrug
interactions should be carefully monitored among patients with
cancer-related fatigue.36
Corticosteroids
Corticosteroids have been used in the treatment of cancer-related
fatigue. In a survey among Swedish palliative care physicians, 40%
of the clinicians reported using corticosteroids to treat fatigue,
and 80% reported very or some effect of corticosteroids on
fatigue.99 Bruera and colleagues, in their prospective, randomized,
double-blind study, observed that 40 palliative care patients who
received a two-week treatment with methylprednisolone demon-
strated an increase in activity that became non-significant after four
weeks of treatment.100 Due to concerns for toxicity associated with
long-term administration, use of corticosteroids should be restricted
to the terminally ill, with concomitant fatigue and anorexia, and/or
those with pain related to bone or brain metastases.10
Megestrol Acetate
Megestrol acetate, a progestational agent, which has been found
to improve appetite in cancer-related cachexia, may have a role in
the treatment of cancer-related fatigue. The effects of megestrol
acetate on fatigue are not clear but probably involve anticytokine
and corticosteroid-type effects.101 Adouble-blind crossover study
comparing megestrol acetate (160 mg 3 times daily for 10days)
to placebo in the treatment of cachexia among patients with
advanced cancer (n = 84, total number of patients) has shown
significant improvement in overall fatigue scores measured by
the PFS.101 Ameta-analysis revealed no benefit of progestational
steroids compared with placebo for treatment of cancer-related
fatigue (Z=0.78; P=0.44).102
L-Carnitine
L-carnitine is a cofactor that binds free long-chain fatty acids to
transport them across mitochondrial membrane for fatty acid
oxidation. Patients with advanced cancer are at risk for carni-
tine deficiency because of decreased intake and increased renal
loss. L-carnitine supplements improved fatigue and depression
in a group of patients with cancer with L-carnitine deficiency.103
Although the use of L-carnitine in cancer-related fatigue is pre-
liminary, carnitine supplementation shows some promise for the
management of fatigue. It is important to note that there are no
randomized controlled trials examining the effects of L-carnitine
for treatment of cancer-related fatigue.
Donepezil
Donepezil is a reversible cholinesterase inhibitor used in the
treatment of Alzheimers dementia. Studies have explored the
role of donepezil in the treatment of cancer-related fatigue.104106
Adouble-blind randomized controlled trial has failed to show any
difference between donepezil and placebo in improving fatigue
among cancer patients.106
Other Medications
Amantadine, an anti-influenza agent with dopaminergic effects, is
used in Parkinsons disease and as an adjunct to interferon-based
therapies for chronic hepatitis C.Amantadine has been utilized
in the treatment of fatigue associated with multiple sclerosis;
however, it has not been studied in cancer-related fatigue.107,108
Non-steroidal anti-inflammatory drugs, selective cyclooxygen-
ase 2 inhibitors (e.g., celecoxib), monoclonal antibodies (e.g.,
infliximab), cytokine antagonists, and bradykinin antagonists
have been considered as potential treatments for cancer-related
fatigue through their direct and indirect cytokine antagonistic eff
ects.38,109
CONCLUSIONS
Fatigue is highly prevalent among patients with cancer, and
is associated with decreased quality of life. Fatigue should be
recognized, assessed, monitored, and treated promptly for all
age groups, at all stages of cancer, before, during, and follow-
ing treatment, as outlined by the NCCN practice guidelines on
cancer-related fatigue.9,10 Several non-pharmacologic and phar-
macologic treatment options are available for the management of
fatigue. Exercise and certain types of psychosocial interventions,
including cognitive-behavioral and educational approaches, are
well supported by research in the treatment of cancer-related
fatigue. Mind and body approaches, including acupuncture,
mindfulness, and yoga, have also demonstrated beneficial effects.
Psychostimulants and antidepressants have been studied the
most in the treatment of cancer-related fatigue. Psychostimulants
are well tolerated and appear to have a role in the improvement
of patients with severe fatigue, despite a large placebo effect.
Antidepressants are most effective in patients with underlying
depression. Activating antidepressants such as bupropion may be
more effective in the treatment of fatigue symptoms. However, it is
important to emphasize that more research is needed to evaluate
the efficacy of pharmacologic interventions, as current evidence
falls short of providing sufficient evidence to recommend medica-
tions for treating cancer-related fatigue.
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 CHAPTER28
Sexual Problems After Cancer
Andrew J.Roth, Jeanne Carter, BarbaraSeidel,
and Christian J.Nelson
INTRODUCTION
It is estimated the number of cancer survivors will reach 18million
by the year 2020.1 Many of these cancer patients will be challenged
with changes in sexual function during the acute phase of treat-
ment and/or in the aftermath of cancer survivorship. Intimacy
can be an important part of quality of life (QOL) that is disrupted
and altered in the setting of a cancer diagnosis and treatment,
with estimates ranging in the literature from 30%90%. 2 The
most common changes in sexual function for cancer survivors
include decreased libido or sexual interest, pain with penetration
(dyspareunia) in women, or erectile dysfunction in men.3 Despite
these significant changes, solutions do exist to assist with sexual
rehabilitation.
PREVALENCE AND ETIOLOGIES
Surgical Treatment
Various surgical procedures can directly affect sexual function-
ing, depending on the anatomy involved. For women diagnosed
with gynecological cancer, surgery can involve the removal of
some or all of the reproductive organs and genitalia, including the
ovaries, uterus, cervix, vulva, or vagina. Surgical procedures may
lead to damage to nerves, as well as the possibility of scarring or
adhesions in the pelvic area as part of the healing process. When
the ovaries are removed, hormonal deprivation can occur, caus-
ing abrupt premature menopause for many women. In postmeno-
pausal women, the removal of the ovaries can result in adverse
sexual and vaginal health because the ovaries produce androgens
that aromatize to estrogen even after menopause.4 Research on
surgical treatment and sexual function demonstrates that hyster-
ectomy for benign conditions does not appear to impair sexual
function.5 Recent studies investigating sexual function after treat-
ment for cervical cancer noted changes in lubrication, vaginal
elasticity, pain, or arousal difficulties, much of which resolves by
one year.5 However, vaginal dryness and decreased sexual satis-
faction and interest have been shown to persist up to two years or
longer after surgery.5 Impairment can also be worsened if other
treatments such as radiation therapy are used in conjunction with
surgical treatment.5 This issue has raised methodological concerns
about the existing literature evaluating the impact of hysterec-
tomy on sexual function. Many of these studies included patients
who received chemotherapy and/or radiation therapy in addition
to the surgical treatment of hysterectomy. As a result, it is diffi-
cult to discern the direct impact of surgical treatment alone on the
sexual functioning of cancer survivors.3 With the field expanding
to explore the benefits of nerve-sparing surgery for women being
treated for gynecologic cancer, further research is warranted.
Surgical treatment also includes the constant reminder or real-
ity of surgical scar(s) and alteration of body parts. For example,
women undergoing mastectomy for breast cancer not only deal
with the loss of a sexual organ but also experience loss of sen-
sation in the surgical area, and altered body image, even with
breast reconstruction.6 Breast and pelvic surgery with lymph
node dissection can result in lymphedema. Individuals receiv-
ing treatment for bladder, colon, and rectal cancer often require
the placement of temporary or permanent ostomy(s) for urine or
stool. Management of these appliances requires practice and prac-
tical advice from medical specialists and often from other veteran
patients, in addition to the adjustment to ones body image.6
Men faced with prostatectomy or cystectomy for prostate or
bladder cancer are at risk of erectile dysfunction. Following sur-
gery, erectile dysfunction may improve for up to 1824months;
however, up to 85% of men may experience erectile dysfunction
after they fully heal 24 months after surgery.7 This percentage
may be accurate for both nerve-sparing and non-nerve-sparing
surgery.7 During the healing process, medications that might oth-
erwise assist with erections may not work as well. There is much
variability in the clinical outcome of different urologists, as well as
important factors such as age and presurgical erectile function that
may determine expected results. Men are also likely to experience
urinary incontinence for at least a few months after prostatectomy.
Fear of urine leakage during sex or at orgasm can be a deterrent to
even getting started. Younger men who have an orchiectomy for
testicular cancer face the challenge of adjusting to the changes in
the look and feel of their testicles, even with surgical implants. In
addition, the men who have had retro-peritoneal lymph node dis-
section may have retrograde ejaculation (semen that ejaculates into
the bladder), which can be uncomfortable and awkward.
Radiation Treatment
For men, radiation therapy to the pelvis can cause fibrosis over
time and can interfere with the nerves and blood vessels neces-
sary for erections.8 The rates of erectile dysfunction after radiation

therapy increase with time for cancer survivors. It has been found
that men who have undergone radiation therapy have equivalent
rates of erectile dysfunction (ED; although the onset is delayed)
to those undergoing nerve-sparing surgery at five-year medical
follow-up.8 Urinary incontinence can also result from radiation
therapy, causing concern about leakage during sexual activity. In
addition, disruption of the bowel from radiation scatter can result
in diarrhea or rectal bleeding. Another side effect of radiation that
may preclude romance is fatigue, which can become prominent
during therapy and can remain for weeks or months afterward.
Radiation therapy has been shown to have direct adverse effects
on female sexual functioning.4 Inflammation to mucosal surfaces
of the vagina can make intercourse uncomfortable. Issues of dys-
pareunia, vaginal stenosis, scarring, and fibrosis can emerge, in
addition to the ramifications of these painful conditions on the sex-
ual response.9 Some authors have also noted that chronic fibrotic
changes to the pelvis may worsen vaginal atrophy over time, thus
creating chronic difficulties up to five or more years after radia-
tion treatment.9 Furthermore, radiation treatment that includes
or focuses on the pelvis, as is the case with total body irradiation
before bone marrow transplant or treatment for pelvic cancers
(i.e., gynecologic, urologic, colorectal), presents the additional
challenge of premature menopause and/or the loss of fertility for
many young women. This situation creates a complex emotional
and physical adjustment for female cancer survivorship.6
Chemotherapy
Multiple obstacles can influence sexual functioning during and
following chemotherapy treatment. Symptoms of fatigue, changes
in mucosal lining, and side effects of nausea, vomiting, and diar-
rhea can be a struggle in the acute phase of treatment10 and can
negatively impact the desire to be sexual or the ability to achieve
adequate arousal. Some chemotherapy treatments can result in
hair loss or thinning, contributing to feelings of sexual unattrac-
tiveness or self-consciousness. Changes in hormonal levels, such
as induction of premature menopause, and vaginal atrophy, which
can interfere with the sexual response, can be a long-term, late
effect of chemotherapy treatment.
Psychological
Feelings of anxiety and depression, changes in relationships, con-
cern about the loss of physical well-being, and difficulty in coping
with changes to the body secondary to cancer treatment all can
have a bearing on sexual function.6
When a cancer diagnosis directly impacts sexual organs, as is
the case with breast cancer, gynecological cancer, prostate cancer,
or testicular cancer, choices of sexuality and QOL may be a second-
ary priority to issues of longevity and survival. If increased anxi-
ety and procrastination in the decision-making process occurs, it
can be helpful to provide a supportive setting so that questions
can be asked and discussed, preferably with a multidisciplinary
team consisting of medical and mental health professionals.
Most often when we think of sexual functioning as it relates to
people with cancer, we think about married, heterosexual couples.
Sexual functioning is no less important or less problematic for gay
and lesbian patients and their partners, as well as the single patient
dealing with a cancer diagnosis and treatment. Sexual issues that
intrude on a long-term relationship or potentially on a future rela-
tionship are frightening. Though talking about sexuality is often
Chapter28 sexuality problems after cancer 221
uncomfortable, it may seem more acceptable in the setting of a
long-term committed relationship. Needless to say, it is also para-
mount for the single patient coping with the uncertainty of future
partners. Practical questions such as When do Italk about my
cancer? How do Idiscuss my scars? or What if Ihave difficulty
getting aroused (specific to concerns about erections or vaginal
dryness) are common in survivorship. Vulnerability and fears can
also emerge:Will anyone want to go out with me if Icant have
sex anymore? or What will happen if I tell them I cant have
children? Sexual and reproductive changes can cause feelings of
shame and embarrassment as well as injury to ones self-esteem
and sense of identity. These issues are not easy to talk about with
others. Therefore it is important for medical professionals to raise
the issue and inquire about the sexual and emotional well-being of
their patients. Broaching the topic not only allows for the oppor-
tunity to educate patients, but also gives permission for the topic
to be discussed, either now or at a later date. Initiation of a con-
versation on this topic also provides the opportunity for referrals
to be made for those patients who are struggling, and who may
benefit from additional support or/therapy.
Other Factors
Many men and women will utilize psychotropic medication to
help them cope with the emotional toll of their cancer experi-
ence. Antidepressants, in particular the serotonin-specific reup-
take inhibitors (SSRIs) and serotonin-norepinephrine reuptake
inhibitors (SNRIs) are excellent medications for mood and anxi-
ety but also have the potential to adversely affect sexual desire,
as well as the ability to achieve orgasm in both genders and ejac-
ulation in men. Nevertheless, these medications can also be an
excellent nonhormonal method to assist women struggling with
menopausal symptoms, in particular hot flashes.11 Anti-anxiety
medicines such as Valium (diazepam), Xanax (alprazolam), and
Ativan (lorazepam) are minor tranquilizers that can take the edge
off worrying too much or panic symptoms. They work in the same
place in the brain as alcohol. But just like alcohol, they can have a
deleterious effect on sexual functioning. In addition, if used regu-
larly, they can cause physical dependence and tolerance. Similarly,
sedative medications that induce sleep, such as Ambien (zolpi-
dem) or Restoril (temazepam), can also interfere with lovemaking.
Hormonal treatments, which may also be part of the prescribed
treatment plan, can influence sexual function. In men with
prostate cancer, hormones are used to lower testosterone levels.
Adverse effects can include impaired sexual interest, as well as the
inability to achieve an erection.5 Hormone treatments also cause
fatigue, which secondarily affects interest in sex. Adjuvant endo-
crine therapy (i.e., tamoxifen or aromatase inhibitors) is often part
of the treatment for female breast cancer patients.12 Vasomotor
symptoms such as hot flashes are the most common side effect
associated with these medications, negatively impacting intimacy
and QOL. Other side effects, such as vaginal discharge, vaginal
dryness, and dyspareunia, have also been noted.12
MANAGEMENT
For Women
Women experiencing changes in sexual functioning follow-
ing a cancer diagnosis and treatment will usually have difficul-
ties with pain with intercourse (dyspareunia) and vaginal health
222 Section V management of specific physical symptoms
issues of vaginal dryness, decreased lubrication, and/or atrophy.
The first step in restoring vaginal health should address using
water-based vaginal lubricants, non-hormonal vaginal moistur-
izers, and pelvic floor exercises. It is important to understand
the distinction between lubricants and vaginal moisturizers.13
Lubricants are used to enhance lubrication response and reduce
friction and pain with sexual activity, and should be used with
any sexual touch on both partners.13 Moisturizers are for tissue
quality and need to be applied regularly at bedtime, to allow for
optimal absorption.4 Non-hormonal moisturizers are considered
a safe alternative for the treatment of vulvovaginal atrophy in
postmenopausal women.12 The potential benefits of pelvic floor
exercises include improved pelvic muscle strength, tone, and cir-
culation for arousal.4 This strategy may also help decrease pain
associated with reflexive tightening.12 In addition, pelvic floor
physical therapy is a great resource in treating vaginal pain and
stenosis.12 For women with persistent vaginal dryness interfering
with QOL, a low-dose vaginal estrogen may be considered for a
short time period after thoughtful discussion with their oncolo-
gist. Many questions exist about the idea of hormone replacement
in the setting of cancer survivorship. Low-dose vaginal estrogens
may initially show a temporary increase in serum hormone lev-
els, which creates a complex and controversial issue for patients
and the medical professionals caring for them in cancer survivor-
ship;12 however, these levels return to the normal postmenopausal
range. This is not the case for systemic absorption of oral or trans-
dermal administration of estrogen.14 Clearly, more safety data are
needed in cancer populations.
Most recently, the question of androgen therapy for treatment
of loss of desire in women was explored. In December 2004, the
US Food and Drug Administration (FDA) reviewed data regard-
ing the submission of a female testosterone patch for the treat-
ment of hypoactive desire disorder. The FDA declined approval
of the testosterone patch and requested more safety studies.15 In
the setting of cancer survivorship, the topic becomes a point of
debate. In a critical review of the literature on androgen therapy,
it was concluded that testosterone supplementation should not be
prescribed to women for treatment of low desire due to concerns
of increased breast cancer risk, based on epidemiologic findings of
higher endogenous serum androgen levels being associated with
increased risk of breast cancer.16 Long-term safety studies are cru-
cial in deciphering the complex relationship between hormonal
supplementation and cancer.
For treatment of dyspareunia, vaginal dilators can be benefi-
cial in treating vaginal stenosis and adhesions.17 Dilator therapy
has been recommended as the only modality meeting reasonable
standards for evidence-based medicine in the treatment of pel-
vic radiation-induced sexual dysfunction, according to a recent
Cochrane report.17 The theory behind vaginal dilator therapy is
that it mechanically stretches the vaginal tissues, allowing for
breakdown of fibrotic tissue, thus improving elasticity.17 However,
some authors question whether stimulation of the vaginal walls
improves blood flow to the affected area.17 More research is
needed, but our clinical experience has been to combine dilator
therapy with pelvic floor exercises to get the potential benefits
of both. However, embarrassment and fear have been shown to
decrease compliance with dilator therapy. In most cases, edu-
cation and support can enhance compliance with sexual reha-
bilitative techniques. A brief intervention demonstrated that
brief psychoeducational interventions were helpful, resulting in
increased compliance with dilator therapy and decreased fear of
painful sexual activity in participants.18
For Men
For men who have erectile difficulty, medications such as Viagra
(sildenafil), Cialis (tadalafil), or Levitra (vardenafil) may help.
These medicines block an enzyme called phosphodiesterase-5
(they are therefore known as PDE-5 inhibitors) and relax penile
smooth musculature. Studies have shown that giving the muscles
and tissue enough time to heal may allow these medications to
work better. For instance, those men who have had a prostatec-
tomy and have given up trying these medications just a few months
after surgery may have been unknowingly shortchanging them-
selves. Had they tried the medication again after 12 or 18months,
after more postoperative healing could take place, they may have
had better success. Ultimately the nerves need to be healthy for
the pills to work. Men can try using the pills every month after
recovery to observe when they become effective. Some men will
use penile injections during the recovery period to try to assure
penile blood flow.
Success after prostate cancer treatment does not necessar-
ily mean achieving the same caliber erection as when a man
was 20 years old. Success may now be considered the ability to
have an erection that is firm enough for penetration to allow for
intercourse. Men can achieve orgasm even without attaining an
erection. Some men discontinue the use of these medications
prematurely because they are not being used correctly or are not
dosed sufficiently. For instance, Viagra is best taken on an empty
stomach a couple of hours before one is planning to have sex.
Cialis, which has a very long half-life and therefore can main-
tain its effectiveness for up to 36 hours, may help relieve some of
the awkwardness of breaking up the romantic moment over the
course of a weekend. These medicines also require some degree of
manual or psychological stimulation to work for some men. It is
usually best to avoid alcohol when taking these medicines, as alco-
hol can also inhibit erectile activity. More urologists and radia-
tion oncologists are recommending the prophylactic use of these
medications before the prostate cancer treatment with continued
use during treatment (for radiation) and soon after prostatectomy.
This allows the muscles to maintain their architecture and blood
flow integrity. The adage if you dont use it, youll lose it appears
to be true here. Experimentation with different positions during
sex, or with different degrees of foreplay or different romantic
settings, may be helpful. Erectile difficulty after prostatectomy is
worse for those who have had erectile difficulty before their treat-
ment. Though it is difficult to believe, there is potential for a more
satisfactory sex life if one can accept some change in sexual activ-
ity when compared to life before the cancer.
There are a number of mechanical means of helping men
achieve erections; however, most men are not comfortable hear-
ing about these methods, letalone trying them. For instance, one
of the most reliable ways to achieve an erection after treatment
for prostate cancer is with a penile injection of a medication such
as alprostadil, or a mixture of papavarine, phentolamine, and
alprostadil (Trimix), which dilates the blood vessels in the penis.
The injection is usually described as similar to a mosquito bite, in a
place that most men associate with pleasure and manhood. Those
men willing to try can improve their sexual functioning; however,

it is helpful to have a supportive partner who can understand and
accept interruptions and adaptations in the romantic moment.
This can feel much less like a disruption if the couple can work the
mechanical aid into their sexual routine, in much the same way
that other couples allow for placement of condoms or birth control
devices such as diaphragms. Penile injection therapy is not free of
problems; however, with proper training these can be minimized.
Some men prefer to use a vacuum erection device. This is a
more cumbersome device; when placed over the penile shaft and
pumped up, it helps men achieve an erection. The resulting erec-
tions are rigid but may not look or feel normal. Again, with a sup-
portive partner and inclusion into the romantic routine, it can
be seen as the aid that it is, not natural and romantic, but neces-
sary and sufficient to allow a sexually intimate liaison to occur.
Suppositories are available that fit inside the opening of the penis
to allow delivery of a medication similar to that in the injection,
which will cause dilation of the penile blood vessels and erections.
The suppository eliminates the painful injections; however, the
medicine itself can cause burning and pain. There are inconsis-
tent results and, like the other mechanical methods, it can signifi-
cantly interfere with the romantic moment.
Because each of the above mechanical methods has to be used
anew every time a man wants to have sex, some men opt for a penile
implant or prosthesis, which, with either a quick unfolding or a
pumping action, will quickly lead to an erection. With an implant
or prosthesis, the choice to have assistance attaining an erection
is made only once. Implants require a separate surgical proce-
dure. The erection and ultimate intercourse does not always feel
the same to a man as before prostate cancer treatment. Hopefully,
though, it falls into the good enough category to facilitate sexual
intimacy. Just trying an aid for obtaining an erection may not be
sufficient. Fifty-six percent of penile injection users stopped treat-
ment in the first year.19 In samples of cancer patients,20 only 38%
of men felt that treatment for their sexual problem was at least
somewhat helpful. Satisfaction with these treatments appears
to be low because patients do not receive very good training or
instructions in how to use the pills or other devices. Many are not
taking pills correctly, are getting an improper dosage, or they are
giving up too early. Many of those who have tried penile injections
are not injecting in the correct area of the penis or are getting an
improper dose. A number of patients complain about the loss of
spontaneity.21 It is important to remind patients and partners that
these alterations require changes in sexual practices that may take
some trial and error, and therefore time, practice, and patience, to
lead to success.
For the Couple
At a time when a couples communication needs to be at its best,
it is often compromised because of the stress of the cancer experi-
ence. Some men tend to be uncomfortable sharing their emotions.
They often have the experience of being the protector and provider
for the family, however incompatible this is with the new reality of
their physical compromise. Even when communication has been
open, honest, and productive between partners who have been
together for many years, the introduction of a life-threatening
illness like cancer can impede useful discussions about difficult
issues. It is helpful if a couple can learn to discuss some of the
physical and psychological changes in a supportive atmosphere.
Understanding how vaginal lubrication is impaired and causes
Chapter28 sexuality problems after cancer 223
pain with intercourse, either because of older age or cancer treat-
ments, can help reduce feelings of rejection or failure when a
woman shies away from sex because she does not want to experi-
ence pain. An ability to discuss the benefits that a partner receives
from non-intercourse sexual activity can take the pressure off a
man who has difficulty achieving an erection after a prostatec-
tomy or a woman who is experiencing pain with penetration.
When a couple finds that there are too many barriers to figur-
ing out how to overcome their sexual problems on their own, they
should seek professional help. If these barriers are more related to
the couples relationship, and existed before the cancer diagnosis,
it may be more prudent to begin with a general couples therapy.
There are likely other areas of the relationship in which problems
exist, but are most noticeable in the bedroom. When this distinc-
tion is not obvious, it may make sense to begin with the sex thera-
pist. It will soon become clear whether the difficulties are related
more to the sexual problems or larger relationship issues. It is also
essential for the cancer survivor to have a comprehensive medical
evaluation with a gynecologist and/or urologist as part of the sex-
ual rehabilitative process to identify any underlying physiological
issues while addressing the emotional adjustments.
Sexual Counseling
Sex therapy provides information, support, and guidance. The
issues discussed include practical strategies for communication,
integrating therapeutic suggestions and treatments into the sexual
relationship, and identification of different positions to decrease
pain during sexual activity. Most patients are seen for one or two
sessions, 5 and most patients report improvements in sexual prob-
lems. In general, most patients can benefit from brief psychosex-
ual interventions including education, counseling/support, and
symptom management. Effective and feasible interventions have
been shown to increase compliance with vaginal dilation recom-
mendations through provision of information and support, as
described by Robinson etal.;22 another example of a brief sexual
intervention to address symptom management was reported by
Ganz and colleagues. 23 This intervention focused on providing
information, support, and symptom management to breast can-
cer patients. Significant improvements in menopausal symptoms,
including hot flashes and vaginal dryness, in addition to improved
sexual function, were achieved with this intervention.
Sensate focus is a widely used sexual therapy technique devel-
oped to enhance sexual contact without the primary focus on gen-
ital contact, allowing for more relation in the setting of intimacy.
This technique has been adapted by Leslie Schover and other sex
therapists working with cancer patients. 3 The goal is to try to
remove the anxiety and distress that come about by focusing on
the goal of sexual performance (i.e., orgasm or erection). Sensate
focus teaches a couple how to take the emphasis off goal-oriented
sex and helps the couple to discover more sensual contact and to
expand the sexual repertoire.
Resources
Finding help for sexual problems can be difficult.24 Ninety-five
percent of patients are willing to meet with a health professional
about sexual difficulty, even though 43% of the partners had
encouraged treatment. Unfortunately, the available help is not
always easily accessible. For many hospitals and office settings,
it is not feasible or practical to have a sexual health program or
224 Section V management of specific physical symptoms
professionals on staff. Therefore, it is important to identify a refer-
ral network of local professionals with experience in treating
sexual difficulties, which may include mental health profession-
als with training in sexual therapy or working with cancer survi-
vors, as well as gynecologists and urologists who have expertise in
treating patients with changes in sexual function (i.e., menopause
and erectile dysfunction) related to medical illness. Educational
resources are also available and can provide further information
and support to help patients achieve greater comfort with these
issues. Local and national support organizations, such as the
Office of Cancer Survivorship (http://cancercontrol.cancer.gov/
ocs/index.html), the American Cancer Society (www.cancer.org),
the American Association for Sex Education, Counseling and
Treatment (http://www.aasect.org/), the Live Strong Foundation
(http://www.livestrong.org), the Association of Reproductive
Health Professionals (www.arhp.org), and the North American
Menopause Society (http://www.menopause.org/) have excellent
informational resources, available both in written form and via
websites.
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10. Krychman ML, Carter J, Aghajanian CA, Dizon DS, Castiel M.
Chemotherapy-induced dyspareunia:a case study of vaginal mucosi-
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11. Loprinzi CL, Sloan JA, Perez EA, etal. Phase III evaluation of fluox-
etine for treatment of hot flashes. J Clin Oncol. 2002;20(6):15781583.
12. Goldfarb S, Mulhall J, Nelson C, Kelvin J, Dickler M, Carter J.
Sexual and Reproductive Health in Cancer Survivors. Semin Oncol.
2013;40(6):726744.
13. Carter J, Goldfrank D, Schover LR. Simple strategies for vaginal
health promotion in cancer survivors. J Sex Med. 2011;8:549559.
14. Kendall A, Martinb L-A, Kendalla A, Dowsett M. The relationship
between factors affecting endogenous oestradiol levels in post-
menopausal women and breast cancer. J Steroid Biochem Mol Biol.
2006;102(15):250255.
15. Sparks RF. Intrinsa fails to impress FDA advisory panel. Int J Impot
Res. 2005;17:283284.
16. Schover LR. Androgen therapy for loss of desire in women:is the
benefit worth the breast cancer risk? Fertil Steril. 2008;90(1):129140.
17. Denton AS, Maher EJ. Interventions for the physical aspects of sexual
dysfunction in women following pelvic radiotherapy. Cochrane Db
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18. Jeffries SA, Robinson JW, Craighead PS, Keats MR. An effective
group psychoeducational intervention for improving compliance
with vaginal dilation:a randomized controlled trial. Int J Radiat
Oncol. 2006;65(2):404411.
19. Sundaram CP, Thomas W, Pryor L, Ami Sidi A, Billups K, Pryor J.
Long-term follow-up of patients receiving injection therapy for erec-
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 CHAPTER29
Neuropsychological Impact of
Cancer and Cancer Treatments
Tim A.Ahles, Charissa Andreotti,
and Denise D.Correa
INTRODUCTION
Increasing research has focused on cognitive changes associated
with cancer and cancer treatments. Patients with cancer of the
central nervous system (CNS) often experience cognitive dysfunc-
tion as a result of the tumor and its treatment, including surgery,
radiotherapy (RT), and chemotherapy.1 As effective treatment
interventions have increased survival, the relevance of including
cognitive evaluations as outcome variables in neuro-oncology
research has been recognized,2 and the National Cancer Institute
(NCI) Brain Tumor Progress Review Group Report has recom-
mended that routine cognitive assessment become the standard
care for patients with brain tumors.3 Guidelines for the neuro-
psychological assessment of patients with brain tumors within
the context of clinical trials have been developed,45 and there
has been an increase in the number of studies demonstrating the
feasibility and relevance of studying cognitive functions in this
population.
A growing body of evidence has documented declines in cogni-
tive abilities in individuals diagnosed with and treated for non-CNS
cancer, including breast and prostate cancer,67 although the bulk
of the research has been done with breast cancer patients and sur-
vivors. Evidence of the growing scientific interest in this topic is the
formation of the International Cancer and Cognition Task Force
(ICCTF), which consists of researchers and clinicians from around
the world and has the following mission (www.icctf.com/):
The mission of the ICCTF is to advance our understanding of the
impact of cancer and cancer-related treatment on cognitive and
behavioral functioning in adults with non-central nervous system
cancers. Members of the ICCTF conduct local, national and inter-
national research to help elucidate the nature of the cognitive and
neurobehavioral sequelae associated with cancer and cancer thera-
pies, the mechanisms that underlie these changes in function, and
interventions to prevent or manage these undesired symptoms and/
or their side effects.
The goals of this chapter are to review the phenomenon of
cancer-related cognitive dysfunction and to present a model for a
multifactorial etiology, common assessment tools, and currently
used methods of treatment and management.
DEFINING COGNITIVE FUNCTION
Cognitive function is a complex construct composed of various
interrelated domains (see Table 29.1). The neuropsychological
domains affected by cancer and its treatment and the severity of
the deficits may vary as a result of disease and treatment type, but
difficulties in executive functions, motor speed and learning, and
retrieval of information are the most prevalent. In cases of CNS
tumors, the severity of cognitive dysfunction can be related to
tumor location and rate of growth, surgery, dose of RT, and extent
of field, as well as type and dose of chemotherapy.1 The literature
indicates that whole-brain RT, alone or in combination with che-
motherapy, results in more pronounced cognitive dysfunction
than either partial RT or chemotherapy alone. Anti-epileptics
and corticosteroids, often used in the treatment of brain tumor
patients, may also further disrupt cognitive functioning.1
Persistent post-treatment changes in cognitive function have
been observed in patients without CNS involvement. Initially
referred to as chemobrain, this constellation of biobehavioral
alterations was originally attributed to the potential neurotoxic
effects of chemotherapy.6 Evidence has been found for neuro-
toxic effects of chemotherapy; however, variability exists in neu-
ropsychological profiles for individuals exposed to particular
chemotherapeutic regimens, with only a subset of approximately
one-third of patients actually exhibiting cognitive deficits. These
findings have led to research that has identified factors that
increase vulnerability to post-treatment cognitive decline, includ-
ing age, cognitive reserve, and genetic factors (see below).6 Further,
increasing evidence suggests that endocrine therapy for breast can-
cer and hormone ablation therapy for prostate cancer can influ-
ence cognitive functioning.8 Finally, several recent studies indicate
that in breast cancer patients, cognitive deficits, as measured by
neuropsychological assessment9 and altered patterns of regional
brain activation studied with function magnetic resonance imag-
ing (fMRI),10 can be evident before treatment commences and in
chemotherapy-nave patients. These observations have led to the
suggestion that such cognitive changes would be better referred
to as cancer- or cancer-therapy associated cognitive change11 to
better address what is likely a multifactorial etiology.
226 Section V management of specific physical symptoms
Table29.1 Domains of Cognitive Functioning
Domain Description
Verbal ability The ability to analyze information and solve problems
using language-based reasoning.
Verbal memory Memory for verbally presented information, including
words and more contextualized information (e.g.,
stories).
Visuospatial ability The ability to visually perceive objects and their
spatial relationships (e.g., position, direction).
Visual memory Memory for visually presented information, including
simple pictures (e.g., shapes) and more contextualized
information (e.g., photographs, scenes).
Working memory The ability to actively hold in mind and manipulate
information.
Processing speed The ability to perform simple cognitive tasks quickly
and efficiently.
Executive function Higher-order cognitive processes involved in regulation
and control (e.g., mental flexibility, planning, abstract
reasoning).
Attention/ The ability to maintain attention and resist interfering
Distractibility stimuli.
Reaction time The time to respond to a stimulus.
PREVALENCE AND CLINICAL SIGNIFICANCE
Although the exact contributions of specific mechanisms to neu-
rocognitive sequelae of cancer diagnosis and treatment remain
unclear, subjective reports, results of objective neurocognitive
testing, and findings from structural and functional imaging
generally support cognitive and functional alterations in these
patients.6 Studies utilizing self-report measures of cognitive func-
tioning demonstrate that up to 50% of cancer survivors report
changes in various domains of cognitive functioning, includ-
ing attention, psychomotor speed, memory, and multitasking
abilities.12
As subjective reports of cognitive difficulties can be inconsis-
tent with objective testing results and correlate with mood and
fatigue, studies employing standardized neurocognitive mea-
sures have been used for confirmation and clarification of defi-
cits. Agrowing number of cross-sectional survivor studies have
suggested that in breast cancer patients, cognitive changes can
persist for 1020 years post-treatment.1314 Further, longitudi-
nal studies with pre-treatment assessments suggest that a sub-
group of patients (25%30%) experience post-treatment cognitive
changes.6 Investigators assumed that cognitive changes would sta-
bilize after discontinuation of adjuvant treatment for patients with
non-CNS cancers; however, there is some evidence that cognitive
deterioration can continue for months following treatment.15
Studies involving patients with high-grade gliomas treated with
chemoradiation suggested that tumor progression contributes
significantly to cognitive decline, and that relatively stable per-
formance is seen in patients without recurrent disease.16 Patients
with low-grade gliomas often experience cognitive difficulties
related to the disease, but studies including long-term survi-
vors reported that both partial and whole brain RT was associ-
ated with cognitive dysfunction several years after treatment
completion.17 Treatment with whole-brain RT and high-dose
methotrexate-based chemotherapy has been associated with more
severe and diffuse cognitive impairment than chemotherapy
alone in patients with primary CNS lymphoma.5
Difficulties exist in determining the prevalence and clinical sig-
nificance of cognitive changes experienced by cancer survivors.
First, the prevalence and clinical significance of cognitive change
vary depending on the type of cancer and the type and intensity
of treatment received. Second, imaging studies (see below) sug-
gest that breast cancer survivors are capable of compensatory
activation (i.e., recruitment of alternate brain structures) in order
to maintain performance on neuropsychological tests. This phe-
nomenon may explain why certain breast cancer survivors report
cognitive problems, but score normally on neuropsychological
testing. This may suggest that the structured nature of the neu-
ropsychological assessment may minimize cognitive difficulties
that emerge in situations that require complex multitasking and/
or sustained attention or with increasing fatigue related to high
demand and/or sleep disturbance, that is, when the limits of com-
pensatory activation are exceeded.
PATHOPHYSIOLOGY OF
COGNITIVEDYSFUNCTION
In patients with brain tumors, cognitive difficulties present at the
time of diagnosis are often related to the location and site of the
tumor,13 but a diffuse pattern of deficits has also been reported
(Figure 29.1).16 Areview of the literature suggests that the pattern
of neuropsychological impairments associated with the delayed
effects of whole-brain RT and chemotherapy is diffuse,1 and most
consistent with frontal-subcortical dysfunction. The late-delayed
effects of RT become apparent a few months to many years after
treatment, and often produce irreversible and progressive damage
to the CNS through vascular injury causing ischemia of surround-
ing tissue, and demyelination of the white matter and necrosis.18
Suggested mechanisms include depletion of glial progenitor cells
and oxidative stress, blood-vessel dilatation, and increased blood
brain barrier (BBB) permeability.19 RT may diminish the repro-
ductive capacity of the O-2A progenitors of oligodendrocytes, dis-
rupting the normal turnover of myelin. Progressive demyelination
may take months to cause symptoms because of the slow turn-
over of oligodendrocytes, contributing to the latency in onset of
neurotoxicity and its progressive nature. In addition, RT achieves
therapeutic effect in part through DNA damage, and can disrupt
hippocampal neurogenesis. 20 Neurotoxicity has been reported
after high-dose regimens with procarbazine, lomustine, and vin-
cristine (PCV) chemotherapy,21 and after high-dose methotrexate
and high-dose cytarabine, particularly if RT is administered before
or during chemotherapy.22 Chemotherapy administered intrathe-
cally is more likely to cause CNS toxicity than when it is applied
systemically. Combined treatment with RT and chemotherapy
may have a synergistic effect,18 as chemotherapy agents may inter-
fere with the same cellular structures as radiation and may act as
a radiosensitizer. Patients without direct CNS involvement have
also been shown to have cognitive difficulties due to cancer and its
treatment. The mechanisms of chemotherapy-induced cognitive
 Chapter29 neuropsychological impact of cancer 227

Chemotherapy Radiotherapy

Genetic Susceptibility

Blood Brain DNA Damage Vascular

Cytokine Hormone White Matter
Barrier & Telomere Ischemia/Necrosis
Dysregulation Reduction Demyelination
Integrity Length

Changes in Cognition
Brain Structure, and
Function

Figure29.1 Potential mechanisms for cancer and cancer treatmentrelated cognitive change.

change are not well understood. Investigators have assumed that
most commonly used cytotoxic agents do not readily cross the
blood brain barrier; however, recent animal studies suggest that
higher levels of chemotherapy may reach the brain than previ-
ously assumed, and that even very low doses of chemotherapy can
increase cell death and decrease cell division in the hippocampus
and corpus callosum.23 Further, a recent animal study demon-
strated that F-fluorouracil (5-FU), an agent that does cross the
blood brain barrier, caused both acute and progressive, delayed
damage to myelinated tracts.23 Therefore, a direct effect of chemo-
therapy on the brain cannot be ruled out.
A growing literature utilizing neuroimaging methods to assess
changes in brain structure and function that may be associated
with cancer-related cognitive decline has emerged in patients
with non-CNS cancers. Cross-sectional and longitudinal studies
of brain structure suggest significantly reduced gray and white
matter globally, as well as focal regional differences in frontal,
temporal, parietal, and subcortical regions compared to healthy
controls.24 Additionally, functional studies utilizing fMRI and
functional positron emission tomography (fPET) have demon-
strated changes in regional activation associated with exposure
to chemotherapy. For example, McDonald et al.10 found hyper-
activation in cancer-diagnosed patients at baseline, hypoactiva-
tion at one month post-treatment, and a return to higher levels of
hyperactivation at one year compared to baseline. These results
suggest that brain structural and functional changes may be pres-
ent before starting adjuvant chemotherapy, consistent with the
findings of neuropsychological deficits pre-treatment, and can be
further disrupted with chemotherapy treatment.
Additional candidate mechanisms (Figure 29.1) include
chemotherapy-induced oxidative stress and DNA dam-
age, immune dysregulation and/or stimulation of neurotoxic
cytokines, and blood clotting in small central nervous system
vessels. Endocrine therapies presumably impact cognitive func-
tion through the alteration of estrogen levels, although they also
decrease anti-oxidant capacity, thereby increasing DNA damage.25
Further, variation in genetic polymorphisms may also
increase vulnerability to cognitive changes associated with
cancer treatments. Evidence suggests that the E4 allele of apo-
lipoprotein E (APOE), a risk factor for Alzheimers disease
and cognitive decline with aging, is also a risk factor for cog-
nitive decline in breast cancer 6 and brain tumor survivors. 26
Additionally, catechol-o-methyltransferase (COMT), which
influences the level of dopamine available in various areas of
the brain, including the frontal lobes, has also been shown to be
a risk factor (the Val allele) in breast cancer survivors.6 Genetic
polymorphisms related to the efficiency of the BBB (e.g., differ-
ential expression of MDR-1) and the functioning of cytokines
(e.g., polymorphisms of interleukin-6), other neurotransmitters
(e.g., 5-HTTLPR), and DNA repair mechanism (e.g., XRCC1)
may also be important. 25
A gap in the field is a lack of a model to guide the research. A
potentially useful perspective is viewing cognitive change associ-
ated with cancer and cancer treatments within the context of factors
that influence the trajectory of normal aging.6 Aging is associated
with a variety of biological changes including increased cell senes-
cence, DNA damage, oxidative stress, inflammation, and decreased
telomere length (telomerase activity), all of which are associated
with various cancer treatments. Further, all of the above processes
have been implicated in cognitive decline and the development of
neurodegenerative diseases. This research suggests that biological
processes underlying cancer, the impact of cancer treatments, aging,
neurodegeneration, and cognitive decline are linked, leading to the
hypothesis that cancer treatments may accelerate the aging process.
228 Section V management of specific physical symptoms

ASSESSMENT AND DIAGNOSIS Executive Functioning

The assessment of cognitive functioning typically begins with Wisconsin Card Sorting Task (WCST)
the patient/survivor or a family member reporting persistent Stroop Color-Word Test
problems with memory, concentration, and ability to multitask
Tower of London
following completion of treatment, when the patient/survivor is
attempting to return to his or her normal routine of work and The Trail Making Test (Part B)
social activities. Aneuropsychological evaluation, which provides Psychological/Emotional
performance-based assessment of various domains of cognitive Personality Assessment Inventory (PAI)
functioning (Box 29.1), is necessary to objectively define areas of
cognitive deficits, as well as strengths that can be built upon in Beck Depression Inventory (BDI)
cognitive rehabilitation. State Trait Anxiety Inventory (STAI)
Much of the emerging research data are based on studies that Cognitive Screening
include pre-treatment neuropsychological assessments and
Mini-Mental State Exam (MMSE)
exclude patients with comorbidities such as psychiatric and neu-
rodegenerative disorders, learning disabilities, and head trauma. Short Test of Mental Status (STMS)
However, when survivors are seen clinically, a thorough history Mini-Cog
Montreal Cognitive Assessment (MOCA)

Box 29.1 Neurocognitive Measures by Cognitive Domain

andScreening Instruments
and clinical evaluation are essential in order to rule out factors
Estimate of Premorbid Intelligence
other than cancer treatment that may be contributing to the sur-
Test of Premorbid Functioning (TOPF) vivors report of cognitive problems, including depression/anxiety
North American Adult Reading Test (NAART) disorders, sleep disorders (e.g., insomnia, sleep apnea), or the side
Verbal Fluency and Naming Abilities effects of medications that could influence cognitive function-
ing. A complete assessment is critical since many of the above
FAS-Controlled Oral Word Association Test (FAS-COWAT) problems can be effectively treated, and resolution of a problem
Animal Naming Test such as depression may result in improved cognitive function-
Boston Naming Test (BNT) ing. Frequently, treatment of these disorders should be considered
prior to initiating a referral for neuropsychological assessment.
Learning andMemory
The National Comprehensive Cancer Network (http://www.nccn.
California Verbal Learning Test II (CVLT-II) org/professionals/physician_gls/f_guidelines.asp) has added
Hopkins Verbal Learning TestRevised (HVLT-R) guidelines for the assessment and treatment of cognitive prob-
Logical Memory Iand II (WMS-IV) lems associated with cancer and cancer treatment under the new
Survivorship Guidelines section.
Rey-Osterrieth Complex Figure (Recall)
Brief Visuospatial Memory TestRevised (BVMT-R)
MANAGEMENT
Attention
The literature examining the efficacy of interventions to treat cog-
Digit Span (WAIS-IV) nitive changes in cancer survivors is growing slowly (Table29.2).27
Arithmetic (WAIS-IV) Medication trials have focused on psychostimulants and acetyl-
Continuous Performance Test (CPT) cholinesterase inhibitors. Mixed results have been reported for
methylphenidate and dexmethylphenidate; however, two studies
Brief Test of Attention
have found support for the efficacy of modafinil in improving
Graphomotor Speed and Visual Scanning memory and attention and reducing fatigue. A comprehensive
The Trail Making Test (Part A) review of studies on interventions for patients with brain tumors
Digit Symbol - Coding (WAIS-IV) suggested that there are several completed and ongoing trials
using pharmacological agents, as well as cognitive rehabilitation
Symbol Search (WAIS-IV) and behavioral interventions. 28 Preliminary studies examin-
Motor Speed and Dexterity ing donepezil and memantine for the prevention or treatment of
Finger Tapping Test cognitive changes associated with cranial RT for primary brain
tumors or metastases reported mixed results, suggesting that
Grooved Pegboard
further research is warranted with these medications. There is
Visual-Spatial Ability preliminary evidence that sparing the subgranular zone of the
Rey-Osterrieth Complex Figure (Copy) hippocampus during whole-brain RT is associated with more pre-
Judgment of Line Orientation served memory function in patients with brain metastases.29
Cognitive rehabilitation approaches are also being developed
Block Design (WAIS-IV)
with initial reports of positive results (Table 29.3).27 The cognitive
 Chapter29 neuropsychological impact of cancer 229

Table29.2 Pharmacologic Strategies for Management and Treatment of Cancer-Related Cognitive Decline

Intervention Type Intervention Description

Pharmacologic Interventions
Methylphenidate and The study results have been inconclusive. Despite promising results in clinical use and reports of
dexmethylphenidate efficacy from open-label trials and case series, randomized, double blind controlled trials have
failed to show significant evidence of superiority when compared to placebo in adult patients.
Modafinil and armodafinil Most clinical trials have studied effects of the drug on fatigue. Cognitive functioning has
been evaluated as a secondary outcome. The studies have shown mixed results. Studies with
larger sample size and improved study-design are needed to better assess the efficacy of
pharmacologic interventions in cancer- and cancer therapyrelated cognitive changes.
Donepezil and memantine Inconsistent evidence for the treatment / prevention of cognitive decline due to cranial radiation
for treatment of brain tumor/metastases

Table29.3 Cognitive and Behavioral Strategies for Management and Treatment of Cancer-Related Cognitive Dysfunction

Intervention Type Intervention Description

Cognitive Cognitive-behavioral therapy
Cognitive rehabilitation
Behavioral Exercise, yoga
Compensatory strategies
Relaxation and mindfulness-based
stress reduction
Focused CBT may improve coping skills and verbal working memory.
Interventions may have benefits in short-term/working memory and attention/concentration.
Frequent, low-intensity exercise and yoga may benefit cognition and overall health, including
all-cause mortality.
Calendars, planners, smart phone applications
Preliminary results suggest positive effects on cognitive functioning, presumably through
reduction in anxiety and stress.

rehabilitation approaches that have been evaluated have included
components like compensatory strategies, cognitive retraining,
problem-solving, and stress reduction techniques (relaxation,
mindfulness meditation). A recent review of factors associated
with the prevention of cognitive decline with aging reported evi-
dence for cognitive training, physical exercise, and possibly diet
as efficacious interventions. These data suggest the value of testing
exercise and dietary interventions to preserve cognitive function
in cancer survivors.
CASE EXAMPLES
Case 1:Brain Tumor
L. E.is a 58-year-old man who was diagnosed with primary CNS
lymphoma with frontal-subcortical involvement. He was treated
with rituximab, methotrexate, procarbazine and vincristine
(R-MPV) chemotherapy and whole-brain RT. At diagnosis, a neu-
ropsychological evaluation indicated the presence of deficits in
graphomotor speed and dexterity, verbal fluency, and learning and
delayed recall of a word list. Longitudinal follow-up showed mild
improvement in memory after induction (R-MPV) chemotherapy,
but persistent or worsening difficulties with graphomotor speed
and set-shifting were evident two years post-treatment comple-
tion and in the absence of disease recurrence. This case illustrates
the complex interaction of disease-related and treatment-related
cognitive change and the manner in which certain disease-related
cognitive problems can improve with treatment, while other defi-
cits can emerge due to treatment.
Case 2:Breast Cancer
M. L.is a 53-year-old woman who was diagnosed with Stage II
breast cancer. Treatment included surgery, ACT (4months), and
radiation therapy (6 weeks). ML described herself as high func-
tioning in all aspects of her life, including at her job as an accoun-
tant prior to her cancer diagnosis. However, at the time of her
evaluation (approximately 6months post-treatment), she reported
difficulties with word finding, verbal expression/articulation,
recall of names, and attention/concentration. Clinical evaluation
revealed no obvious other medical conditions that could be con-
tributing to her cognitive problems. However, she did report a his-
tory of depression related to her diagnosis, relationship issues, and
a death in the family. She was prescribed Lexapro with improve-
ment in her depressive symptoms. Neuropsychological evalua-
tion revealed mild deficits in attention, processing speed, verbal
fluency, and verbal learning, which are consistent with the cog-
nitive problems she reported. This case illustrates that cognitive
problems can persist despite the effective treatment of depressive
symptoms.
CONCLUSIONS
Brain tumor patients experience cognitive changes associated
with their disease and a variety of aspects of their treatment, par-
ticularly RT and chemotherapy. As a growing number of brain
tumor patients are surviving longer, understanding the impact of
230 Section V management of specific physical symptoms
treatment modality on cognitive function, ability to function, and
quality of life becomes increasingly important. Cognitive changes
for non-CNS cancer patients were initially assumed to be primar-
ily secondary to chemotherapy, hence the term chemobrain.
However, increasing evidence suggests that there are additional
disease- and treatment-related factors that interact with existing
individual risk factors, such as a genetic susceptibility to deter-
mine risk for post-treatment cognitive dysfunction and some con-
sideration that cancer treatments may interact with the biology of
aging to accelerate cognitive aging. Future research in non-CNS
cancers needs to expand beyond breast cancer since the results
may not generalize to other cancer populations (colon, prostate,
etc.) and treatments (different chemotherapy agents, targeted
therapies, androgen ablation, etc.). Further, the individual risk fac-
tors and mechanism(s) for cognitive changes remain to be defined,
in order to more effectively develop interventions that prevent or
reduce the negative impact of cancer and cancer treatments.
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27. Von Ah D, Storey S, Jansen CE, Allen DH. Coping strategies and
interventions for cognitive changes in patients with cancer. Semin
Oncol Nurs. 2013;29:288299.
28. Gehring K, Aaronson NK, Taphoorn MJ, etal. Interventions for cog-
nitive deficits in patients with a brain tumor:an update. Expert Rev
Anticancer Ther. 2010;10:17791795.
29. Gondi V, Tome WA, Mehta MP. Why avoid the hippocampus?
Acomprehensive review. Radiother Oncol. 2010;97:370376.
 CHAPTER30
Sleep and Cancer
Amy E.Lowery
INTRODUCTION
To date, the study of sleep and sleep disorders in people with
cancer has received limited attention in the research and clinical
realm. Despite being a relatively new and burgeoning area, sleep
research in the cancer population has steadily increased over the
past decade. Studies show a high prevalence of sleep disturbance,13
which often spans across the course of cancer treatments and into
post-treatment survivorship.3,4 There are a host of negative con-
sequences associated with poor sleep that can impact the medi-
cal and emotional well-being of individuals with cancer.57 Even
though disturbed sleep is one of the most common symptoms
reported by cancer patients, it is widely under-recognized and
poorly treated by cancer providers, particularly when compared
to the management of other frequent symptoms, such as pain or
fatigue. This chapter will discuss the sleep disorders most com-
mon to cancer patients, as well as proposed causes and treatments.
TYPES OF SLEEP DISORDERS
There are over 70 identified sleep disorders, each with a specific
definition and diagnostic criteria. This stringent criterion for
identifying sleep disorders in cancer patients, however, is rarely
used. Instead, sleep problems are typically viewed as a symptom
rather than a diagnosable disorder, and terms such as sleep distur-
bance, insomnia, trouble sleeping, impaired sleep, and sleep-wake
disturbances are used interchangeably. Sleep disorders that are
of greatest relevance in the care of cancer patients include sleep
apnea, circadian rhythm disruption, and insomnia.
Sleep Apnea
Sleep apnea (SA) is characterized by repeated pauses in breath-
ing (apneas) during sleep. Other signs of SA include loud snor-
ing, gasping for air during sleep, feeling sleepy during the day, and
impaired alertness. The prevalence in the general population is
4% for men and 2% for women. In obstructive sleep apnea (OSA),
a physical block to airflow, despite respiratory effort, interrupts
breathing. In central sleep apnea (CSA), breathing is interrupted
by a lack of respiratory effort. In either type, the body becomes
deprived of oxygen during these interruptions in breathing, and
oxygen levels in the body drop. Individuals with SA are rarely
aware of their difficulty breathing during sleep, and a bed part-
ner or other witness may recognize symptoms (e.g., loud snoring).
Because of this lack of awareness, individuals often go years (or
decades) without diagnosis or treatment.
A growing body of research shows that untreated SA is dam-
aging to health and is associated with stroke, heart disease,
hypertension, diabetes, obesity, and mortality. Arecent large, lon-
gitudinal study found that OSA was associated with increased risk
of death from cancer.8 The risk of death was doubled in those with
moderate OSA, and for those with severe OSA there was nearly a
fivefold increase in death from cancer. Although this was one of
the first studies linking OSA and cancer in humans, previous ani-
mal studies have shown increased tumor growth in mice deprived
of oxygen. OSA is of potential importance to cancer patients, par-
ticularly in the head and neck cancer group, where symptoms con-
sistent with OSA have been found in 12%30% of post-treatment
patients.9 In addition, cancer patients being treated for pain with
opioid analgesics should be monitored, as these medications can
cause or exacerbate CSA.
Circadian Rhythm Disruption
Circadian rhythms are roughly 24-hour cycles of physiological,
mental, and behavioral changes that are maintained by internal
biological clocks and are kept in sync with the environment by
external cues, such as light. Circadian rhythms influence body
temperature, hormone release, metabolism, sleep-wake cycles,
and other important bodily functions. Abnormal circadian
rhythms have been associated with obesity, diabetes, depression,
bipolar disorder, seasonal affective disorder, and even increased
risk of cancer. 5 Disruption in circadian rhythms can be due to
shift work, jet lag, or other changes affecting ones activity sched-
ule, such as retirement. Research has found that cancer patients
show less distinction between daytime and nighttime activity, a
pattern indicative of circadian rhythm disruption.10,11 These dis-
rupted circadian patterns are evident in breast cancer patients
even before the start of chemotherapy,10 and progressively worsen
with more enduring disruption after repeated administrations of
chemotherapy.11 Greater disruptions are associated with impaired
daytime functioning, severe fatigue, and depressive symptoms.12
Insomnia
Insomnia is the most common sleep disorder within the general
and cancer populations. It involves perceived difficulty with fall-
ing or staying asleep or poor sleep quality, which occurs despite
adequate opportunity for sleep, and results in daytime impair-
ment.13 Although studies of insomnia in cancer patients often
assess individual symptoms of insomnia rather than full diagnos-
tic criteria, prevalence rates are consistently high (59%79%).13
232 Section V management of specific physical symptoms

Large prevalence studies of patients with mixed cancer types

Box 30.1 Predisposing, Precipitating, and Perpetuating
habitually show higher rates of insomnia symptoms among Factors of Insomnia
patients with breast, gynecologic, or lung cancer.2,3,14 Breast can-
cer patients often report that staying asleep throughout the night Predisposing Factors
is their greatest challenge, which is characterized by the number of
times they wake up throughout the night and the amount of time Older age
it takes to fall back to sleep.1,4,14 Similar reports were described Female gender
by ovarian cancer patients.15 Impaired daytime functioning, such
Family history
as low activity, fatigue, and naps, are also frequently reported.1,16
Cancer treatment regimens may account for more of the vari- Personal history
ance in insomnia symptoms than cancer site.17 The prevalence of Medical comorbidities
insomnia often peaks at different times throughout the cancer tra-
jectory. In some patients, insomnia is most common in the period Hyperarousability trait
immediately following diagnosis, prior to treatment.1,15 Other Psychiatric disorder
studies have found that sleep disturbances begin or worsen during Precipitating Factors
cancer treatments.18,19 Although sleep may improve after cancer
treatments end, it often does not return to a pre-treatment level, Stress from cancer/treatment
and problems may continue for months or years.14,15 Savard etal.3 Psychological disorder (depression, anxiety)
found that insomnia develops a chronic course in cancer patients
Cancer symptoms (pain, fatigue, hot flashes)
as much as 95% of the time. The rate of sleep disturbance also rises
in more advanced cancer patients (85%), where significant symp- Surgery
tom burden and uncontrolled physical symptoms can contribute Hospitalization
to poor sleep quality.20
Radiotherapy
Causes of Insomnia Chemotherapy
Insomnia in cancer patients is likely multifactorial, with physi-
Corticosteroids
ological, psychological, behavioral, and environmental bases. One
of the frameworks most commonly used to conceptualize the Certain medications
development of chronic insomnia is Spielmans 3P model,21 which Hormonal or biological therapy
posits three factors that contribute to a chronic course of insom-
nia (Box 30.1). Cytokine production
Perpetuating Factors
Predisposing Factors
Predisposing factors increase ones vulnerability to developing Daytime naps
insomnia. Individuals with certain demographic, medical, or Excessive time in bed
psychological characteristics have a greater likelihood of experi-
Irregular sleep-wake schedule
encing sleep problems. Alone, these factors will not cause insom-
nia, but they may lower an individuals threshold for insomnia to Sleep interfering activities (watching TV in bed)
occur. Examples include being female, having a family history of Unrealistic sleep expectations
insomnia, and having a hyperarousability trait.
Faulty sleep appraisals
Precipitating Factors
Tendency to worry in bed
Precipitating factors trigger acute insomnia episodes. These often
occur as stressful life events, which certainly include being diag-
nosed with cancer. However, for cancer patients, stress is not many environmental factors. Physical symptoms, such as pain or
the only culprit, as disease- and treatment-related factors can fatigue, can impact sleep. In fact, the experience of multiple symp-
also disrupt sleep. This is evident by studies showing insom- toms is so ubiquitous, symptom clusters have been the focus of
nia peaking during the period immediately following diagnosis much investigation.23
and during active treatment.11,19 Cancer and its treatment can
affect secretion of the cytokines that play a role in the sleep-wake Perpetuating Factors
cycle. Hormonal therapy and biological therapy can also cause Perpetuating factors are variables that contribute to the mainte-
or worsen pre-existing insomnia. Androgen deprivation therapy nance of insomnia over time, even after the triggering event has
for prostate cancer19 and hormonal therapy for breast cancer are passed. They are often compensatory behaviors or beliefs that
often associated with sleep problems. Lowery et al.22 found the have developed out of attempts to cope with sleeplessness. It is
severity of menopausal symptoms (i.e., night sweats, hot flashes) important to note that many of the behaviors may have been adap-
was the greatest contributing factor of sleep problems in breast tive in helping with short-term sleep loss (e.g., daytime naps) or
cancer survivors (compared to demographic, disease, and psy- were necessary during recovery (e.g., excessive time in bed), but
chological factors). Treatments such as interferons, interleukins, as they become habits, insomnia persists long term. In addition,
tumor necrosis factor (TNF) alpha, and corticosteroids can lead when patients cannot sleep, they expose themselves to stressful
to insomnia. Hospitalization can cause sleep disruption due to thoughts, increasing their arousal state to that above a wakeful

level. Studies have found that most patients attribute their sleep
disturbance to intrusive thoughts. 24,25 Rumble et al. 25 found
higher levels of dysfunctional sleep-related thoughts and sleep
inhibitory behaviors as antecedents of insomnia, and higher levels
of pain, fatigue, and hot flashes and lower levels of positive mood
as consequences of insomnia in a study of cancer patients.
Consequences of Insomnia
A vast literature shows that untreated chronic insomnia negatively
impacts mood, physical symptoms, pain sensitivity, fatigue, and
quality of life.5 Insomnia is increasingly viewed as an indepen-
dent risk factor for future depression.2628 Insomnia has also been
associated with impairment in activities of daily living, accidents
and falls, cognitive functioning and decision-making capabili-
ties, adherence to treatments, immune functioning, and increased
healthcare utilization.5 Indirect costs of insomnia in the United
States at around 2005 are estimated to total over $100 billion a
year.5 Insomnia is also associated with increased rates of medi-
cal conditions such as hypertension, diabetes, obesity, stroke, car-
diovascular and infectious diseases, all-cause mortality, and even
certain cancers.5
Screening and Assessment
Unfortunately, despite its high prevalence and adverse conse-
quences, insomnia rarely receives attention in cancer care. In
addition, insomnia is often mistakenly viewed as secondary to
cancer, which leads to profound under-treatment. Among research
studies and clinical care practices, the methodology for assessing
sleep disturbance in cancer patients is highly variable, ranging
from a single item to a validated sleep questionnaire. Research
suggests that accurate assessment of sleep disturbance in cancer
patients requires a more thorough evaluation than that provided
by single-item responses.16 However, detailed assessment of all
cancer symptoms would be impractical in busy oncology practices.
Berger etal.29 identified measurement as one of the major chal-
lenges in studying sleep in patients and caregivers. Unfortunately,
very few medical providers assess for sleep problems, and patients
rarely bring it up during visits. Therefore, it often goes undiag-
nosed and untreated. A survey of cancer patients found only
16.6% of those with sleep problems had discussed it with their
cancer provider, and patients were not receiving sleep treatment
elsewhere.30 This suggests many missed opportunities to provide
help and to reduce suffering and potential health risks. The use of
a standard symptom inventory may allow patients to identify and
articulate a problem that might otherwise go unreported.16
The ideal approach to assessing sleep disturbance in cancer care
should follow the two-step screening model, which has been suc-
cessful in managing other symptoms, such as distress. 31 First, a
rapid screening of sleep disturbance should be conducted as part
of routine care. In this first phase of screening, a single item, such
as How often do you have trouble sleeping? can be used as part
of a general symptom inventory. Patients who indicate that their
trouble sleeping is frequent and/or distressing should be given a
referral for further evaluation by a professional trained in behav-
ioral sleep interventions, such as a psychologist, social worker, or
nurse practitioner (second phase of screening). Athorough assess-
ment is imperative in the evaluation of sleep disorders in cancer
patients. In settings where these services are not readily avail-
able, clinicians and nurses who provide supportive or palliative
Chapter30 sleep and cancer 233
care services may be trained to effectively assess and provide tai-
lored interventions for sleep disturbances in cancer patients.32,33
Follow-up screening is recommended to monitor relapse. Recent
Canadian practice guidelines34 recommend routine screening for
sleep disturbances at initial diagnosis, start of treatment, regular
intervals during treatment, end of treatment, post-treatment sur-
vivorship, upon recurrence or progression, at end of life, or during
times of personal transition (e.g., family crisis).
A thorough evaluation includes a sleep history (e.g., duration,
frequency, severity) and detailed medical, substance, and psy-
chiatric history.13 It is especially important in this population to
assess for symptoms that may be causal or contributory, such as
pain, breathing difficulty, headaches, hot flashes, limb movements,
frequent urination, and gastrointestinal upset. Self-administered
sleep questionnaires may also be helpful. Commonly used mea-
sures include the Pittsburgh Sleep Quality Index (PSQI), 35 the
Insomnia Severity Index (ISI), 36 the PROMIS Sleep-Disturbance
and Sleep-Related Impairment, 37 and the Epworth Sleepiness
Scale (ESS).38 At-home sleep diaries can be a helpful monitoring
tool for identifying specific sleep problems and patterns, as well as
providing a means for ongoing evaluation of the efficacy of deliv-
ered interventions.39 Amore detailed review of measures used to
assess sleep disturbances in cancer patients can be found in a pub-
lication by Berger etal.16
Objective sleep measures, such as actigraphy and polysom-
nography (PSG), may be used to complement self-reported sleep
perceptions, but objective measures do not necessarily correlate
with self-reports. Actigraphy is a motion-sensitive device worn
on the wrist that monitors activity, thereby providing an indirect
measurement of sleep-wake patterns. It is indicated as an objec-
tive method to characterize circadian rhythm disturbances, activ-
ity level, and certain sleep disorders, such as insomnia associated
with depression. Actigraphy can be a valuable tool for objectively
evaluating sleep, but comes with some methodological chal-
lenges.16 PSG involves a formal sleep study (done overnight at a
sleep laboratory) that provides in-depth information about stages
of sleep, as well as physiological measures (blood oxygen levels,
heart rate, breathing, and eye and leg movements). PSG is rarely
indicated to detect the sleep disturbances of cancer patients,
and is infrequently used in cancer research due to the complex-
ity and expense.16 However, PSG is necessary to confirm some
sleep disorders, such as movement-related and breathing-related
sleep disorders, which require medical treatment and will need
to be evaluated in a formal sleep laboratory. Indications for such
referrals include patient reports of crawling feelings in the legs,
jerking movements during sleep, or a history of snoring, apnea, or
disordered breathing. Treatment-resistant insomnia or continued
daytime impairment may also require a PSG for further diagnos-
tic workup.13
Interventions
Interventions for insomnia consist of both pharmacological and
non-pharmacological interventions. Pharmacological interven-
tions, such as prescription sleep aids and over-the-counter or
herbal supplements, are by far most frequently used5,40,41 and
can provide some benefit, but have not been well studied and
have associated risks.33,42 When pharmacotherapy is utilized, the
choice of a specific pharmacological agent within a class should
be directed by (1)symptom pattern, (2)treatment goals, (3)past
234 Section V management of specific physical symptoms
treatment responses, (4) patient preference, (5) cost, (6) avail-
ability of other treatments, (7)comorbid conditions, (8)contra-
indications, (9)concurrent medication interactions, and (10) side
effects.13 For patients with insomnia, the recommended general
sequence of a medication trial is13 (1) short-intermediate act-
ing benzodiazepine receptor agonists (BZD or newer BzRAs) or
ramelteon (i.e., zolpidem, eszopiclone, zaleplon, and temazepam);
(2) alternate short-intermediate acting BzRAs or ramelteon if
the initial agent has been unsuccessful; (3)sedating antidepres-
sants, especially when used in conjunction with treating comor-
bid depression/anxiety (i.e., trazodone, amitriptyline, doxepin,
and mirtazapine); (4) combined BzRA or ramelteon and sedat-
ing antidepressant; and finally, (5)other sedating agents, such as
anti-epilepsy medications (i.e., gabapentin, tiagabine) and atypical
antipsychotics (i.e., quetiapine and olanzapine). The widespread
use of prescription sleep aids for cancer patients is illustrated
in a classic study examining medication prescription practices
within five major oncology centers.41 Hypnotics were the most
frequently prescribed drugs, accounting for 48% of total prescrip-
tions, and 44% of the psychotropic prescriptions were written for
sleep. Arecent Drug Abuse Warning Network (DAWN) report43
warned of the frequent adverse reactions that occur when hypnot-
ics, such as zolpidem, are combined with other drugs that depress
the central nervous system, such as anti-anxiety medications, nar-
cotic pain relievers, or alcohol, where sedative effects can be dan-
gerously enhanced. Drug interactions are a significant concern
in cancer patients, where polypharmacy is common and could
impair cognitive functioning and increase the risk of falls. This
is especially precarious in elderly and advanced cancer patients.
Bruera etal.40 found that 77% of patients admitted to a palliative
care unit had been receiving sedative hypnotics for a mean of 11
weeks. Discontinuation of these medications did not result in sig-
nificant sleep disturbance, and improved cognition significantly.
Despite their common use, currently the safety and efficacy of
sleep medications have not been established in cancer patients. To
date, very little research has examined this area, and the potential
risks need to be better understood. Arecent large, longitudinal
study42 found that patients receiving prescriptions for zolpidem,
temazepam, and other hypnotics suffered over four times the
mortality as the matched hypnotic-free control patients. Cancer
incidence was increased 35% among those who were prescribed
high doses. Even patients who were prescribed fewer than 18 hyp-
notic doses per year experienced increased mortality, with greater
mortality associated with greater dosage prescribed. After review-
ing the existing research, the Oncology Nursing Society (ONS)
Putting Evidence Into Practice (PEP) panel33 classified pharma-
cological interventions for sleep disturbances as benefits bal-
anced with harms for use in cancer. They caution clinicians and
patients to weigh the beneficial and harmful effects according to
individual circumstances and priorities.
Over-the-counter antihistamine or antihistamine/analgesic
type drugs (OTC sleep aids), as well as herbal and nutritional
substances (e.g., valerian and melatonin), are not recommended in
the treatment of chronic insomnia due to the relative lack of effi-
cacy and safety data.13 Melatonin has demonstrated some useful-
ness in promoting sleep in individuals with circadian rhythm sleep
disorders. The use of melatonin as a sleep agent in patients with
cancer has not been studied, although there is growing interest in
the role that melatonin may have as an immunogenic agent.44
Non-pharmacological interventions include behavioral therapy,
combined cognitive-behavioral therapy, education, light therapy,
exercise, and other activities, such as mindfulness, yoga, and acu-
puncture. Research in this area has rapidly grown over the past
few years and shows the greatest support for cognitive-behavioral
therapy for insomnia (CBT-I) in cancer patients and survivors39
with therapeutic effects maintained long term.45 However, other
interventions may be effective when offered at early stages, or even
prior to, insomnia. In the premorbid stage, when a patient may
not be experiencing insomnia but has predisposing factors, edu-
cational interventions, such as information on good sleep hygiene,
can encourage patients to engage in behaviors that may decrease
the likelihood of developing insomnia. Providing brochures in
clinics and waiting rooms, or offering informational seminars
for patients and caregivers, can increase their awareness of sleep
health and how to seek help for sleep problems. As patients begin
to experience acute insomnia, behavioral interventions, such as
relaxation training and stimulus control therapy, can reduce the
severity and duration of insomnia. If detected early, brief inter-
vention can prevent the worsening of sleep disturbances. At this
stage, pharmacological therapy may be appropriate when used in
combination with behavioral therapy to assist patient in the short
term (e.g., acute stress).13 Medication to manage other symptoms
that are problematic at night (e.g., pain, hot flashes) may also be
beneficial. It is important to inform patients that certain behav-
iors that may be necessary or helpful during the precipitating
event (e.g., daytime naps, excessive time in bed) should be viewed
as temporary. When insomnia has developed a chronic course,
patients are best treated by a clinician trained in CBT-I. At this
stage, tailored interventions are required to target the psycho-
logical and behavioral factors perpetuating insomnia. Despite the
fact that medication is most often used to treat chronic insom-
nia, pharmacological interventions at this stage are less effective.
Duration of sleep medication use is not intended to exceed four
weeks (AASM), and insomnia often rebounds.13
Among cancer patients, CBT-I has been found to reduce sleep
onset latency, wake after sleep onset, fatigue, depression, and
anxiety. 32,46 CBT-I has been found to increase total sleep time,
sleep quality, and quality of life, with therapeutic effects main-
tained at one year follow-up.46 The ONS PEP panel39 classified
CBT for sleep disturbances as likely to be effective for use in
cancer. Specific modalities with supported efficacy are listed in
Box 30.2 (see Woodward etal.47 for more detailed description).
CBT-I interventions should be flexible and tailored to meet the
individual needs of the patient. Previous studies have found suc-
cess in training nurses and other non-sleep specialists to deliver
CBT-I. Internet and self-help formats are also beginning to show
efficacy, acceptability, and feasibility.48,49
BARRIERS TO TREATMENT
Unfortunately, cancer patients with sleep disturbances seldom
receive non-pharmacological interventions.14,50 Effective man-
agement depends to a significant degree on providers awareness
and recognition of symptoms and effective treatments. An IOM
report entitled Sleep Disorders and Sleep Deprivation:An Unmet
Public Health Problem5 stated, The major problem with current
behavioral therapies is not their efficacy; rather it is lack of clini-
cian awareness of their efficacy and lack of providers sufficiently
 Chapter30 sleep and cancer 235

Box 30.2 Specific Modalities of CBT-I with Supported Efficacy

Stimulus control: decreases the negative association between the bed and wakefulness, frustration, and worry. The objectives of
stimulus control therapy are for the patient to form a positive and clear association between the bed and sleep and to establish a
stable sleep-wake schedule.
Instructions to patients:Go to bed only when sleepy; maintain a regular schedule; avoid naps; use the bed only for sleep; if unable
to fall asleep (or back to sleep) within 20 minutes, remove yourself from bedengage in relaxing activity until drowsy, then return
to bedrepeat this as necessary.
Relaxation training: designed to lower somatic and cognitive arousal states that interfere with sleep. Relaxation training can be
useful in patients displaying elevated levels of arousal.
Instructions to patients:Numerous techniques are available; examples include progressive muscle relaxation, guided imagery, or
abdominal breathing. Progressive muscle relaxation training involves methodical and systematic tensing and relaxing different
muscle groups throughout the body.
Sleep restriction:intended to improve sleep continuity by increasing sleep drive. As sleep drive increases and the window of oppor-
tunity for sleep remains restricted with daytime napping prohibited, sleep becomes more consolidated. Once sleep continuity sub-
stantially improves, time in bed is gradually increased, to provide sufficient sleep time for the patient to feel rested during the day,
while preserving the newly acquired sleep consolidation. Sleep compression is often preferred for use with medically ill patients. It
operates in a similar manner; however, it is a gentler form of sleep restriction and limits immediate effects of sudden, increased sleep
deprivation and sleepiness. Time in bed is slowly decreased over days/weeks until sleep is consolidated, then gradually increased.
Instructions to patients: Determine the patients actual total sleep time during baseline period (12 weeks) using sleep diary data.
Set bedtime and wake-up times to approximate the total sleep time (in sleep restriction this is done at once, in sleep compression
bedtime and wake-up times are decreased in smaller increments every week). Time in bed should not be set to < 5 hours. Weekly
adjustments are made; time in bed can be increased 1520 minutes each week once total sleep time increases.
Cognitive therapy: seeks to change the patients overvalued beliefs and unrealistic expectations about sleep. Cognitive therapy uses
a psychotherapeutic method to reconstruct cognitive pathways with positive and appropriate concepts about sleep and its effects.
Common cognitive distortions that are identified and addressed in the course of treatment include I cant sleep without medica-
tion, If Icant sleep Ishould stay in bed and rest, My life will be ruined if Icant sleep.
Light therapy: (establish or reinforce a regular sleep-wake schedule with improvement of sleep quality and timing)
Sleep hygiene: involves educating patients about healthy lifestyle practices that improve sleep.
Instructions to patients: maintain a healthy diet and regular daytime exercise, have a quiet sleep environment, and avoid napping,
caffeine, other stimulants, nicotine, alcohol, excessive fluids, or stimulating activities before bedtime.

Adapted from Schutte-Rodin S, Broch L, Buysse D, Dorsey C, Sateia M.Clinical guideline for the evaluation and management of chronic insomnia
in adults. J Clin Sleep Med. 2008 Oct 15;4(5):487504.

trained and skilled in their use (p. 77). Barriers likely exist at
patient,51 practitioner,52 and healthcare system53 levels. Patients
often do not mention these problems, believing they are not impor-
tant,30 that the problem will not last, or that treatments will not be
effective.51,54 Practitioners rarely receive education or training in
sleep disorders and are often unfamiliar with the symptoms, risks,
and evidenced-based treatments.55,56 Finally, routine practice may
be constrained by practical barriers, such as time or institutional
support.53 An urgent need was identified to increase patients and
providers awareness of the importance of sleep health and recog-
nition of sleep problems through educational efforts.5
SLEEP CLINICS WITHIN CANCER CENTERS
Premier comprehensive cancer centers are increasingly recog-
nizing the importance of treating sleep disturbances in cancer
care by establishing sleep services within the center (i.e., UPMC
CancerCenter, 57 MD Anderson, Memorial Sloan-Kettering, Mayo
Clinic Cancer Center) where patients can receive specialized sleep
interventions by clinicians experienced in addressing the unique
needs of cancer patients and caregivers. Having sleep services
available within the cancer center can help integrate sleep therapy
into the patients plan of care.33
SPECIAL POPULATIONS
Older Adults
Insomnia is the most common sleep problem in adults age 60 and
older. Older adults tend to have longer time spent in bed, greater
sleep onset latency, more nighttime awakenings, more transient
arousals, and lower sleep efficiency. Breathing-related sleep disor-
ders, such as OSA, are also more common. Sleep disturbances can
have a profound impact on daytime functioning in older adults,
and can negatively impact memory and learning, mood, falls/acci-
dents, speed, fatigue, physical stamina, and dependence on others.
Sleep in older cancer patients can also be made worse by bed rest
or hospitalization, where poorer day/night distinction can result
in a free run schedule.
236 Section V management of specific physical symptoms
Sleep disturbances are particularly important to treat in older
adults, however, because they can exacerbate certain illnesses
and usually will not improve on their own. Older adults who
have trouble sleeping may use more over-the-counter sleep aids.
Behavioral interventions and CBT-I programs have been shown
to be effective for older adults. 58 Older patients should be reas-
sured that being older does not mean they have to feel tired all
the time. In addition to standard CBT-I interventions, clinicians
should review important safety considerations with their older
adult patients as part of the sleep treatment (see Box 30.3).
Children and Adolescents
There are very few prospective studies of sleep problems in chil-
dren with cancer; therefore, the exact prevalence of sleep prob-
lems in children with cancer is unknown. However, estimates
have been reported as high as 87%. 59 Studies on the long-term
effects of cancer in adult survivors of childhood cancers show
that fatigue and sleep disturbances continue to be a problem for
individuals many years after their cancer experience.59 Excessive
daytime sleepiness has been shown to be the most common sleep
complaint (60% of children with cancer and 80% of children with
brain cancer).59 Sleep-disordered breathing has shown to be pres-
ent in 40%46% of children with cancer.59 In children with leu-
kemia, insomnia was the most common sleep problem identified
(39% of children).59 Parasomnias, such as nightmares, are also
common for these children and may be due to the strong nega-
tive emotional experience from being treated for cancer, or even
certain medications, such as steroids.59 Sleep problems should be
routinely assessed and treated in children with cancer. Further
research is needed to develop and validate sleep questionnaires
specific to the needs of children and adolescents.
Caregivers
Sleep disorders in caregivers have received little attention in
the past, but are a crucial area of clinical and research focus
given the serious impact that sleep deprivation can have on
caregivers level of functioning. Recent research has found that
as many as 95% of caregivers report moderate to severe sleep
disturbance, 60 and is associated with increased depression,
Box 30.3 Safety Considerations for Treating Sleep in Older Adults
Make sure the floor is clear of objects
Lock up any medicines
Attach grab bars in the bathroom
Place a gate across the stairs
Keep a telephone with emergency phone numbers by your bed
Have a good lamp within reach that turns on easily
Put a glass of water next to the bed in case you wake up thirsty
Use nightlights in the bathroom and hall
Do not smoke in bed
Remove area rugs so you will not trip if you get out of bed in
the middle of the night
Do not fall asleep with a heating pad on; it may burn
poorer coping, lower optimism, less mastery, and higher neu-
roticism. 61 Despite being given sleep medications, caregivers
are often reluctant to take them. Clinicians are encouraged
to routinely assess caregivers sleep patterns and functioning,
and to offer education and interventions to improve caregiv-
ers sleep, functioning, and quality of life. 60 There needs to be
greater clinical focus given to the needs of caregivers, particu-
larly in regard to their sleep.
CONCLUSION
Sleep disturbances are very common in people affected by can-
cer. Although they may be triggered by an array of cancer-related
factors that are difficult to change (e.g., hot flashes), their per-
sistence over time is most importantly explained by modifiable,
behavioral, and cognitive factors. Sleep medications are the most
commonly used intervention, often for prolonged periods of time.
However, these medications are associated with a number of side
effects and risks, especially when used long term. CBT is consid-
ered highly effective in treating insomnia in cancer patients, sur-
vivors, and caregivers. The practice of identifying and effectively
treating sleep disturbances in cancer care is currently suboptimal
due to numerous barriers. Further efforts are needed to increase
awareness via education, to develop brief, validated sleep ques-
tionnaires, and to integrate screening and treatment of sleep dis-
turbances in cancer care.
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 CHAPTER31
Weight and Appetite
Loss in Cancer
Neil MacDonald
INTRODUCTION
Research models must more closely take into account the interdependence
of social, behavioral, psychological, organ system and cellular molecular
mechanisms of disease.1
The anorexia-cachexia syndrome (ACS) is a multifaceted
symptom complex with variegated features that tie together
in a framework not yet clearly understood. Cachectic patients
exhibit variable combinations of weight loss, anorexia, muscle
and fat loss, together with wasteful increases in energy expen-
diture. The syndrome is usually accompanied by myriad other
symptoms, most notably taste changes, increased satiety with
delayed gastric emptying, decreased function, and fatigue,
which in some part may be related to loss of cardiac muscle and
reserve. The above problem constellation is accompanied usu-
ally by psychosocial distress, commonly severe in both patients
and caregivers.
The ACS is ultimately present in most cancers, notably in upper
intestinal, pancreas, and lung cancer (50% at presentation), but
as all cancers progress, the majority of patients waste. It is a syn-
drome that kills; an estimated 20%30% of patients die because
of it. ACS is the major cause of patient dependency on caregivers
and institutions, as the result of the associated loss of function.
Weight loss closely correlates with chemotherapy response and
overall prognosis.
The concept of multiple organ dysfunction has been described.
These are syndromes characterized by multiple non-linear
interrelated and variable interactions between the metabolic,
neural, endocrine, immune and inf lammatory systems. 2
Certainly cancer anorexia-cachexia is such a syndrome. Does
its complexity and variability from patient to patient preclude
the development of effective therapies? With improved knowl-
edge of its pathophysiology, the mists are beginning to clear. We
will follow Andersons model to tease out the pathophysiologic
aberrations in immune, neuroendocrine, metabolic, and social
controls, examining the tapestry that links them together. We
will follow with an account of therapy linked to our pathophysi-
ologic understanding, concluding with optimistic projections
for future research.
PATHOPHYSIOLOGY
Chronic Inflammation
The immune response to cancer is a two-edged sword. Clearly,
immune mechanisms protect us from cancer development and
progression. More often than not, the immune profile in patients
with advanced cancer turns traitorous and stimulates both
tumor spread and symptom severity. 3,4 Characteristically, the
associated chronic inflammatory state engendered by the tumor
then features an increased production of unhelpful cytokines and
chemokines. Key ones include Interleukin 1, 6, 8, and TNF, but
multiple others interact with these in a series of self-supporting
cycles. The sum effect, aside from tumor progression, is to con-
tribute to all of the pathophysiologic changes outlined in Box 31.1.
The immune profile inducing this inflammatory pattern is very
similar to that present when we encounter an acute stressinfec-
tion, trauma, burns, and so on. In these settings increasing angio-
genesis, calling immune cells to the site of attack and opening
tissue planes, is essential to curing the acute insult. When this
spigot is left turned on, as it is in a chronic inflammatory state
(CIS), great harm follows.
Chronic inflammation is a driving force increasing the inci-
dence and severity of many cancer symptoms. 5 The ACS is the
symptom complex most closely associated with inflammation.6
The anorexia (appetite) component arises from the effects of
inflammatory cytokines, most notably Interleukin 1, on hypotha-
lamic and brain stem centers modulating appetite.7 Energy intake
is a tightly regulated process wherein appetite-stimulating neu-
rotransmitters and those suppressing appetite are in balance. The
suppression arm is in the ascendancy in ACS patients.
Orexin is a hypothalamic neurotransmitter that modulates both
appetite and activity. In a murine cancer model, decreased loco-
motor activity and feeding occur in association with low orexin
production.8 Deficiency links indirectly with a CIS.
Cachexia, defined as an ongoing loss of muscle mass, with
or without fat mass,9 results in large part from increased mus-
cle proteolysis and decreased synthesis induced by inflamma-
tory cytokines. Fat loss roughly parallels muscle loss. Increased
wasteful lipolysis is present. Of interest, blocking certain lipases
240 Section V management of specific physical symptoms
Box 31.1 Pathophysiology of Cancer Anorexia-Cachexia
Anorexia
Food intake
Gut motility
Altered taste and smell
Cachexia
Muscle synthesis
Muscle proteolysis
Lipolysis
Insulin resistance
Oxidative stress
Energy metabolism
Purposeless increase
predictably has led to reduced fat breakdown but has protected
against muscle loss.10 The nature of this fat muscle crosstalk
remains a puzzle.
Neuroendocrine Changes
Advanced cancer patients often have the following neuroendo-
crine profile:
activation of the hypothalamic-pituitary axis and an increase in
cortisol secretion with loss of diurnal rhythm
hypogonadism, particularly in patients on opioids
aberrations in the autonomic nervous system. These changes
occur in both parasympathetic and sympathetic arms, but
clinically we more commonly recognize increased sympathetic
activity such as rapid heart rate and increased energy expen-
diture. Sympathetic neural discharge is closely linked with
chronic inflammation. Whether through inflammation or,
more likely, multiple less clearly established mechanisms, per-
turbation of the ANS contributes to tumor growth11 and prob-
ably anorexia-cachexia.12,13
Psychosocial Aberrations
Anorexia and change in body habitus can create a self-sustaining cycle
of distress. The patient is concerned with appearance, loss of appetite,
and energy. Caregivers note these changes and attempt to remedy
them, but the patient wont take in or enjoy the caregivers offerings;
then both feel guiltythe caregiver perhaps rejected and the patient
feeling that the caregivers efforts are not being acknowledged. Part
of the caretakers guilt relates to actions based on uncertain infor-
mationAm Idoing the right thing? As cachexia advances, efforts
may be redoubled, in some part because patient wasting presages
impending deathHave we worked hard enough?
This cycle may be compounded by the involved health profes-
sionals whose earnest intervention centers on the therapies they
understand, such as chemotherapy. Some may not be able to open
a conversation that deviates from tumor response into areas in
which they may know little, and thus cannot advise patients and
caregivers on useful strategies. Again, a harmful cycle is main-
tainedincreasing lack of communication, further distress, and
advancing anorexia and cachexia. One cannot eat or be motivated
to exercise if paralyzed by concern.
Physiologic changes contribute to the depth of psychosocial
distress. Unbridled inflammation is associated with the ACS, as
it is with some psychiatric illnesses.14 We also know that a his-
tory of early childhood abuse may place the mark of Cain upon
a person, which results in a propensity to develop adult chronic
inflammatory states.15 Similarly, a lack of social support is associ-
ated with chronic inflammation and with quality of life.16,17 Are
the disadvantaged more likely to develop cachexia? Is this one
factor leading to the poor prognosis of these patients when they
encounter life-threatening illness? This is a plausible hypothesis,
but not yet investigated.
THERAPY
The following composite case illustrates a comprehensive
approach to the treatment of anorexia-cachexia. Subsequent text
will discuss the rationale for this approach, together with com-
ment on agents that increase appetite. An account of drugs at the
clinical level is included.
Ms. C. L., a 53-year-old teacher with a husband and two grown
children, presented to an emergency department with an episode of
severe epigastric pain. She had not felt well for about eight weeks,
noting the onset of a poor appetite, low-grade abdominal discom-
fort, early satiety, fatigue, and weight loss, of about 4.5kg. Adiagno-
sis of adenocarcinoma of the pancreas was made, with widespread
liver metastases, accompanied by the anorexia-cachexia syndrome.
The family is a highly supportive group, bolstered by relatives
and friends. Ms. C.L.adopted a policy of prepare for the worst,
but accept the best. She accepted the invitation to take part in a
clinical trial of two chemotherapeutic agents. The acute pain sub-
sided and was controlled with low-dose opioid therapy.
Ms. C. L. now partnered with an integrated oncology/pallia-
tive care team. Members included the traditional nurse/physician
dyad, a physiotherapist, occupational therapist, dietitian, and
social worker, with access as needed to a psychosocial and pastoral
worker. Her family enthusiastically accepted their active partici-
pant team role. They had helpful ideas, based on their past experi-
ence and culture, and felt empowered by their care team. Some of
them involved complementary therapies, but most involved tech-
niques for enhancing food intake.
Ms. C.L.s past activities included daily running and regular
participation in a yoga group. She asked if it was safe to continue
in this practice. The answer was an enthusiastic yes from the
team. She was advised to continue while she also adopted a mixed
cardiovascular resistance exercise routine. In addition to dietary
counseling, including vitamin D and omega-3 fatty acids (in the
form of fish oil), an exercise program was initiated.
Ms. C.L.was placed on a laxative protocol and metaclopromide.
She tried her sons marijuana, with consequent improvement
in sleep and enjoyment of food. Whether this happy outcome
stemmed from the marijuana or her short-termed tumor response
is open to question. Over the next four months, Ms. C.L.regained
her weight, returned to near-normal activity, and enjoyed excel-
lent symptom control.
Evidence of Ms. C. L.s CT scan relapse was accompanied by
an increase in pain and a loss of appetite, with weight loss. She
 Chapter31 weight and appetite loss 241

refused further chemotherapy and enrolled in a cachexia drug Table31.1 An Approach for Identifying Potentially Correctable
trial. She also had a celiac plexus block, with good effect. Causesof Cancer Cachexia
Her appetite returned along with her weight, while her activity
levels remained near normal. Her distress scores were low. Once Psychological Factors Possible Approaches
again she was bolstered by the strong family actively involved in Anxiety Anxiolytics
her care, and by the professional team. Depression Antidepressants
The pancreatic cancer grew apace. Six weeks later, despite all
Family distress Social assistance
efforts, the manifestations of anorexia-cachexia returned. Ms.
Spiritual distress Counseling
C. L.s food intake decreased dramatically, and her weight and
activity levels plummeted. The family was devastated. One rela- Eating Problems
tive campaigned for the use of parenteral feeding. Appetite Referral to a nutrition clinic or a
After discussion, everyone agreed that enteral-parenteral feeding Disturbed taste or smell dietician
was not advisable. Ms. C.L.received a short course of prednisolone
with a positive effect on her appetite. She was switched to megestrol, Oral
which may have slowed weight loss and helped to maintain food Dentures, mouth sores Dental consultation
intake. Fatigue became a major feature. The occupational therapy Thrush Anti-fungal medication
and physiotherapy team members focused on safe conservation of Dry mouth Oral moisteners
strength and maintenance of home-based activities. Illness pro- Swallowing difficulties Change medications
gression continued, but Ms. C.L.remained at home with good pain Anti-fungal medication
control, and without psychosocial distress. She died at home sur-
Esophageal dilation
rounded by her family. Her exit was dignified and peaceful.
Stomach
The overriding approach is to ensure impeccable general symptom Gastric reflux Regurgitation therapy
control. One will not eat if racked with pain or fighting to catch Early satiety Gastric stimulants
every breath. It is clinically useful to adopt the concept of primary Nausea and vomiting Dietary counseling
cachexia and secondary cachexia. Primary cachexia relates to the Related to cause
complex metabolic syndrome that concerns us in this chapter, sec-
Bowel Obstruction Related to cause
ondary cachexia to the multiple symptoms bedeviling the patient
that interfere with eating. These secondary problems have spe- Constipation Laxatives, especially if
cific therapies (e.g., analgesics for pain). Oncology teams should Diarrhea on opioids
use a formal checklist (an example is outlined in Table 31.1) to Related to cause
ensure that all problems are identified and treated. Malabsorption
As will be discussed, there is no single approach that alleviates
Pancreas Pancreatic enzymes
primary ACS. This chaotic entity, with so many interfacing ele-
ments, unsurprisingly does not yield to a simple drug or non-drug Fistulas Related to cause
therapy. And yet, many of these therapies show promise in isola- Fatigue
tion. They logically can be combined in a multifaceted care plat- Sleep disturbances Sleep counseling
form. Iwill discuss success to date achieved by single entities, and
Physical limitation Soporificsselected
conclude with an account of the results achieved by the few multi- use
Motivation
modal clinics now extant.
Cognitive fatigue Exercise protocol
Methylphenidate
Appetite Agents
Corticosteroids Function
Without a doubt, corticosteroids will stimulate appetite and mood, Exercise protocol
probably as a result of their anti-inflammatory action. Alas, they Occupational therapy
are catabolic drugs; the most commonly used agent, dexametha- Pain
sone, is probably the most catabolic corticosteroid. Thus while
appetite improves, muscles melt. Therefore they should be used Appropriate analgesics
in short bursts, preferably for patients where alleviating muscle Nerve blocks:surgical,
wasting is no longer deemed to be important. percutaneous
Counseling
Progestational Drugs
Metabolic Diabetes
Two progestational drugs are in use for the anorexia cachexia syn-
drome:megestrol and, less commonly, medroxyprogesterone, both Adrenal insufficiency As indicated
agents related to endogenous progesterone. Strong evidence from Hypogonadism
multiple trials shows that these compounds can improve appetite Thyroid insufficiency
and body weight.18 The weight gain is mainly fat (not a bad thing in
Reprinted from MacDonald N, Ch. 7, Anorexia-cachexia, in:Oneschuk D, Neil Hagen N,
itself), not muscle mass. Recently, rodent data have shown that the MacDonald N, eds., Palliative Medicine:ACase-Based Manual, 3rd ed. (2012):84, with
prostagens can enhance muscle growth in cachectic states.19 There permission of Oxford University Press.
242 Section V management of specific physical symptoms
are no supportive human data to date. Putative mechanisms of
action include reduction of chronic inflammation, increase in orexa-
genic neuropeptides, and, in mice, inhibition of muscle proteolysis.
Megestrol is available in liquid oral suspension with good bio-
availability. It can help appetite in patients in whom its adverse
effects are either judged to be acceptable or unlikely to occur.
Special concerns are raised in patients already hypogonadal or
concerned about impotence, and those deemed to be at unac-
ceptable risk of deep vein thrombosis. Edema and adrenal insuf-
ficiency, the latter risk precluding sudden stoppage of therapy, are
among other concerns to be considered. Single drug therapy in
some patients may be helpful. Perhaps megestrol will be better
employed as a component of a multimodal approach.20
Cannabinoids
Among the protean actions of cannabinoids, stimulation of appetite
with enhanced enjoyment of food is commonly noted. Cannabinoid
receptors are found in virtually all tissues, including areas where
they support digestion, protect fat, and regulate energy metabo-
lism.21 Probably cortical activity, where they may act to improve
taste, smell, and enjoyment of food, are in play.22 While studies
whose endpoints are directed toward cancer patient appetite are
equivocal, a recent trial centered on taste and smell outcomes was
positive;23 sleep improvement was an additional benefit.
In the setting where a complex syndrome interfaces with a com-
plex agent, it is not surprising that a murky picture emerges. There
may be as yet undefined subsets of patients who will clearly ben-
efit. In any event, a trial may be worthwhile in those deemed to be
at low adverse effect risks, who have poor appetite with aberrant
taste and smell features.
Appetite and Cachexia Agents
Non-selective Anti-inflammatory Drugs (NSAIDs)
Aspirin and aspirin-like agents are among the most widely pre-
scribed analgesics in the world. They act primarily by blocking the
enzyme cycloxygenase 1 (COX1) and cycloxygenase 2 (COX2), with
consequent decrease in multiple inflammatory pathways medi-
ated by these enzymes. NSAIDs, however, have protean influence
on other molecular pathways whose relevance to the anti-cancer
and anti-cachectic effect of NSAIDs is unclear. Their role in reduc-
ing intestinal polyp formation and progress is established, as is
the consequent decrease in colorectal cancer incidence. NSAIDs
may also have wider anto-tumor effects; aside from pain, they may
impact other cancer symptoms, including cancer cachexia.
Because of their anti-inflammatory activity, it is not surpris-
ing that they could alleviate cachexia, but this observation has,
strangely, not stimulated many cancer cachexia trials. A recent
review24 found 13 studies, all with a modest enrollment. In 11 of
these, body weight and/or lean body mass increased, while some
of them also reported improvement in function and quality of life.
Surprisingly, as many patients were older and had comorbid con-
ditions, overall toxicity was acceptable.
To my knowledge, only one group (Kent Lundholm and colleagues)
has persistently studied NSAIDs. In 1994 they demonstrated that
indomethacin use was associated with both cachexia amelioration
and prolonged survival.25 Their subsequent studies bear out these
observations, although survival advantage is less clear.
What is the best NSAID? Ibuprofen, naproxen, celecoxib, and
indomethacin have performed best in human trials; etodolac in
rodent studies have perhaps the best pedigree. Therefore, both
mixed COX1-COX2 inhibitors and the relatively select COX2
blocker celecoxib may have crossover activity in both cancer and
in cachexia, influencing cancer growth and cachexia manage-
ment. More NSAID trials will go forward, probably as a compo-
nent of a treatment platform.
Anabolic Agents
Hypogonadism is common in cancer patients, particularly the
elderly, those with cachexia, or those on opioids. As low testos-
terone will reduce muscle anabolism, logically replacement ther-
apy should be effective. And yet there is a disconnect between
laboratory evidence and the application of therapy. We do not
know, other than anecdotally, whether physiologic testosterone
replacement improves patient well-being, while trials of pharma-
cologic doses of testosterone and related androgens are inconclu-
sive. Lack of clean proof of efficacy, along with concern over the
adverse effect of these drugs, leaves us with the conclusion that
pharmacologic doses of testosterone, its derivatives, and ana-
logs, are generally not useful anti-cachexia agents. It has been
the authors practice to measure testosterone, and if low and the
adverse risk is acceptable, to discuss a trial of replacement ther-
apy with the patient.
Recently, a number of selective androgen receptor modulators
(SARMs) have been developed and are entering clinical trials. The
hypothesis is that these agents will belie concerns about nonspe-
cific androgen adverse effects, and their pure anabolic effect will
increase muscle mass and function.
At the time of writing, we are in limbo. Phase I, II, and early
Phase III trials showed that the SARMs tested have a good safety
profile and can increase lean body mass.26 Alas, results of recent
Phase IIAIII trials did not show substantive patient benefit. The
SARM MK-0773 did increase low body mass in sarcopenic frail
elderly women, but this did not translate into improved func-
tion.27 Two large placebo trials of enobosarm (Gtx) in advanced
non-small cell lung cancer patients did not meet the preset end-
points for body mass and function. While there was evidence of
increased lean body mass in both trials, the improvement of func-
tion noted in the earlier phase trials, as measured by stair climb
speed and power, was not clearly evident.
Therefore, the use of SARMs remains to be established. Safety
questions have been largely allayed in the placebo-balanced studies.
Neither Phase III trial included a nutrition/exercise arm. Perhaps
SARMs will resurface as part of a multimodal research study.
Ghrelin
Ghrelin is a small peptide hormone primarily released by cells
in the stomach antrum, but also to a lesser extent in other body
organs. Ghrelins characteristics seem ideal for an anti-ACS
therapy:
Stimulates appetite (a major physiologic role in health) via vagal
connections to feeding centers in the hypothalamus, and pos-
sibly by direct influence on orexigenic neuropeptides;
Reduces chronic inflammation through suppression of NFB
activity and related decrease in cytokines influencing muscle
catabolism (e.g., Il-6, Il-8, and Il-1) with stimulation of an anti-
inflammatory cytokineIl-10;
Increases gastric motility;
Modulates energy metabolism, thus reducing wasteful energy
expenditure;

Increases
lean body mass and has a positive effect on lean body
metabolism;
Improves cardiac function with deceased sympathetic
activity.28,29
There is no evidence of major toxicity in animals or humans to
date, but some of the above cherished outcomes for cachectic
patients may relate to other ghrelin effects, welcome in health but
worrisome if one has cancer, as it may stimulate:
Increase in growth hormone (GH) and insulin growth factor
(IGF), which theoretically could stimulate tumor cell growth;
Reduction in apoptosis;
Increase in cell migration and tissue invasion with possible
increase in angiogenesis and thus capacity for tumor cell inva-
siveness and metastases.30
Its potential tumor-stimulating risks are unclear; there are even
a few murine studies that show tumor inhibition. The direction
of ghrelin effects relates to the complex milieu in which it oper-
ates. For example, in different settings its anti-inflammatory effect
(inhibiting tumor activity) may possibly balance its pro-tumor
influence.
At present, there is no surety as to whether ghrelin is a risky
candidate; clinical murine cachexia trials and the few human tri-
als conducted are reassuringharmful tumor advances are not
noted.
There is evidence in some, but not all, studies on cancer
cachexia that ghrelin or an analogue, anamorelin, can indeed
increase lean body mass while stimulating appetite, without
serious adverse effects;31 rather than ghrelin itself, a hormone
with a short half-life, one of its analogues will emerge as the
agent of choice.
Its role will become clearer in 2014, when data from a large
randomized clinical trial involving oncology patients treated
with anamorelin becomes available. One will look carefully at
the data for adverse tumor effects. There is a reasonable expecta-
tion, however, that the cancer-enhancing risk/benefit ratio will
be good. If so, and if anamorelin appears on the market, care-
ful long-term studies will be needed to determine which patient
subsets do well, and if there are subsets where tumor stimulation
may be present.
Myostatin Inhibitors
Myostatin, a member of the transforming growth factor (TGF)
family, is an important regulator of muscle growth. 32 It is pro-
duced primarily in muscle, but may also arise from other tissues,
including tumors. Myostatin acts in balance with MyoD to sculpt
muscle mass. Acting through the activin receptor II B (ActRIIB),
it down-regulates MyoD (an anabolic factor), decreasing muscle
synthesis while also activating muscle proteolysis. Perhaps myo-
statin prevents us from looking like Hulk Hogan. Gene mutations
exist in nature, resulting in an inactive product. Mice, cattle, and
humans with this aberration are heavily muscled.
In most cachectic states studied (mouse and man), myostatin
blood and muscle levels are increased. Does reducing myostatin,
either by blocking its receptor or with drugs, build strong muscle,
thus reducing cachexia? This is a logical hypothesis, given impe-
tus by a study showing that an antagonist to ActRIIB in a mouse
tumor model not only reversed muscle loss, but improved sur-
vival.33 Alas, human trials of receptor antagonists to date have not
Chapter31 weight and appetite loss 243
been successful. Currently, there is at least one human trial in pan-
creas patients studying receptor antagonist/chemotherapy therapy.
Autonomic Nervous System Modulators
Psychiatrists are particularly cognizant of the deleterious effect of
an ANS gone awry. They may be less aware of the relation between
autonomic dysfunction, cancer progress, and cancer symptoms.
Multiple autonomic receptors are manifest on cells through-
out the body. Again, a straightforward cause-and-effect rela-
tion to state of activity and particular outcomes is not usually
evident. Nevertheless, agents modulating autonomic activity
are now under study. Examples of recent activity include the
following.
B2 Agonists
B2 Agonists (e.g., clenbuterol, formatoral) will stimulate muscle
synthesis. While members of this class are a mainstay of asthma
care, only inconclusive human data are available. The cardiac and
anxiety-inducing adverse effect profile may limit interest.
Beta Blockers
Paradoxically, these common drugs may both limit tumor activ-
ity and alleviate symptoms, notably cachexia. The website of the
National Cancer Institue (www.cancer.gov/clinicaltrials) lists
many studies on beta blockers and cancer. Almost all studies cen-
ter on the effect of beta blockers on tumor progression; only one
looks at cancer cachexia.
Espindolol
Espindolol is a mixed agonist/antagonist, thus a mongrel drug
with unclear actions on multiple sympathetic receptors. A suc-
cessful phase II trial has just been completed.34
Other medical fields have made a major niche for ANS drugs;
witness the widespread use of beta blockers for treating hyper-
tension and congestive heart failure (CHF), where they improve
fatigue and cardiac function. Cachectic patients have reduced
heart muscle, which may contribute to fatigue, and thus they may
benefit from beta blockers. It is possible that these agents will find
wider employment in cancer care, both to slow or prevent disease
progress, and to combat symptoms. Again the mantra:data from
further studies are needed.
Melanocortin 4 Inhibitors
Based on the thesis that activation of the melanocortin system in
the hypothalamus increases anorexia, energy metabolism, and
cachexia, inhibitors of a key receptor, melanocortin-4, have been
developed.35 Results to date are not encouraging.
NON-PHARMACOLOGIC APPROACHES
Psychosocial Therapy
Elements of care include opening patient and family concern on
wasting to discussion and providing patients and caregivers with
counseling. If the professional does not feel equipped to handle
the issue, referral to a dietitian (underused in this area) and/or to
a palliative care team with an interest in ACS should follow. Team
members will include the traditional nurse, physician, social
worker triad, now bolstered with addition of a psychologist, dieti-
tian, physiotherapist, and occupational therapist.
The patient must know that it is all right not to force-feed.
Caregivers must be advised not to put undue pressure on a recal-
citrant loved one. Both can be taught sensible dietetic practices.
244 Section V management of specific physical symptoms
Critically, both must be taught about the ACS. This remains a
problematic issue, as some health professionals are themselves ill
informed and at a level of understanding exemplified by a reluc-
tance to even weigh a patient lest we further worry the patient.
More likely, the patient and caregivers are fully aware, and avoid-
ance of the issue compounds the problem. They will benefit from
lifting the veil; knowing that loss of appetite and weight has biologic
causes can reduce their unmerited sense of inadequacy. Ensuing
discussion and formulation of an action plan will be facilitated.3638
Nutrition
Cancer ACS is not dissimilar to the wasting experienced by the
frail elderly. Here also, a proportion of weight and function loss
often stems from a dysfunctional metabolic state. There is suffi-
cient evidence that nutritional counseling, with an emphasis on
protein intake, can reverse muscle loss or improve function, and
sometimes both, in elderly populations.39
Results achieved with similar diet enhancement and advice
directed toward the advanced cancer patient are inconclusive.40
Improvements in important elements of life quality, including
appetite and food intake, may occur, but they do not translate into
sustained reversal of muscle loss or functional loss. Reasons for
this include:
1. The lack of commonly accepted evidence-based guidelines. The
published advice of cancer centers is too often contradictory,41
while ongoing reinforcement is haphazard.
2. Healthy people lose muscle as we age. It is unlikely that inactive
cancer patients will profit by dietalone; muscles must be used.
As part of a common we must do everything mode of thinking,
caregivers may ask for technical feeding (i.e., enteral [EN] or par-
enteral [PEN] feeding. Alas, these measures are futile in patients
with primary ACS. The metabolic derangement trumps the nutri-
ent supplements. However, clinicians must be alert to situations
where the patient is starving and a contributory metabolic cause is
not dominant. One must be particularly on guard when assessing
patients with tumor obstructions at all levels of the enteric canal.
If in doubt, a time-limited trial of technical feeding is justified.
Exercise
Exercise has a beneficial effect on the incidence of many tumors, on
tumor progress, on fatigue, and on quality of life. It is an integral
part of survivorship programs. Does it help patients with advanced
cancer? Here the evidence is modest. A2009 meta-analysis found
few trials and patients.42 However, a positive trend was present.
Asubsequent larger report is in concert with the above report.43
There are solid data showing that exercise sustains both muscle
and function in elderly populations.44 As chronic inflammation
is present in both the frail elderly and cachectic cancer patients
and as, in some part, exercise has anti-inflammatory effects, it is
a plausible hypothesis that exercise may be beneficial throughout
the cancer trajectory.
Multimodal Therapy
It is clear from the preceding account of isolated therapies that
while many may have modest anti-cachectic effects, none has
proven to be fully successful unto itself. It follows that we should
consider multimodal therapy, which marries non-drug enter-
prises with drug therapy.45 To date, there are only a few reports
published on the value of judicious use of drugs combined with
nutritional intervention, exercise and palliative care standard
symptom control.4649
The results of these enterprises are encouraging. Of note, none
of these programs included a specific anti-cachexia drug ther-
apy. There is an ongoing trial in Europe that is testing the full
multimodal approach. MENAC is a randomized trial enrolling
cachectic pancreas and lung patients who receive standard ther-
apy or additional multimodal care, including nutritional coun-
seling, exercise, omega-3 fatty acids, and an NSAID (celecoxib).
Patients will also receive chemotherapy if indicated. Istrongly
believe that this trial is essential and trust that it will expand
to enroll North American patients. One hopes that similar tri-
als that study multimodal care using other anti-cachectic drugs
may ensue. 50
While awaiting the result of these trials, which may be some
years in coming, Ibelieve it logical to consider inviting patients
and families battling ACS to enlist in a care platform that includes
psychosocial and nutritional counseling, exercise, and the judi-
cious use of the currently available ant-cachexia agents that are
not highly catabolic. In a way, this is simply putting our money
where our mouth is; recently, there are many rhetorical state-
ments coming from influential leaders and august bodies calling
for whole patient/family care.5154 Establishing teams that clearly
enlist the patient and family to combat wasting in the advanced
cancer patient is an excellent way to move rhetoric to reality.
CONCLUSION
We can arrive at a logical (at least in one mans mind) set
of approaches to the management of the anorexia-cachexia
syndrome.
Impeccable symptom assessment and management from the
point of diagnosis;
Symptom care linked with other anti-chronic illness approaches
from the time of diagnosis;
Access to nutrition-rehabilitation programs geared to
strengthen and maintain function and control fatigue from the
point of diagnosis;
Achange in research and educational priorities to reflect the
importance of the ACS and a commitment to interdisciplinary
collaboration to optimize patient outcomes.1
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 SECTION VI

Palliative and
Terminal Care

32 Hospice and Home Care 249 34 Training of Psychologists and

Stephen R.Connor Psychiatrists in Palliative Care 259
E. Alessandra Strada and William S.Breitbart
33 Canadian Virtual Hospice:ATemplate
for Online Communication and Support 253
Harvey Max Chochinov, Mike Harlos, Shelly Cory,
Glen Horst, Fred Nelson, and Brenda Hearson
 CHAPTER32
Hospice and Home Care
Stephen R.Connor
Hospice care continues to be viewed in many countries as an
inpatient setting for the care of those at lifes end. Increasingly,
hospice care is now viewed as palliative care provided to people
in the place they call home. Home can be the house one has lived
in for a long time, or it can be an assisted living setting where one
has moved, or the nursing facility one has to live in to meet basic
needs. It could also be the street, the city park, the village, the
homeless shelter, or even the prison.
Unlike hospice development in the United Kingdom, which was
centered primarily in inpatient facilities, in the United States hos-
pice grew primarily as a home-care program. In 2012 there were
over 5560 unique hospice programs, operated by 3950 different
companies or organizations. There has been enormous growth in
the number of hospices in the United States in recent years (see
Figure 32.1). All these programs provide home care. Hospice
care in the United States is measured by days of care. In 2012,
95.5% of patient days were provided at the routine or continuous
home-care level, while only 3% were at the general inpatient or
inpatient respite levels (see Table 32.1).
What little we know about where people say they want to
spend their last days comes from public opinion surveys that
probe what people believe they would do if facing a life-limiting
illness or condition. In the United States, over 90% of people
say when asked if they would prefer to die at home or in a hos-
pital that they would prefer to be at home. The reality is that
approximately 50% of Americans die in acute care facilities.
Hospice patients predominantly die in the place they call home
(see Table 32.2). In 2012, 66% of hospice patients died in per-
sonal residences, assisted living facilities, or nursing homes.
Only 6.6% of hospice patients died in acute care hospitals in
units that are not run by the hospice program. An increasing
number of hospice patients are dying in hospice inpatient facili-
ties (27.4%).1
HOME CARE AND PALLIATIVE HOME CARE
Home care in general can be provided to many people with health
conditions that do not require hospitalization. To qualify for
home care, patients usually must have a condition that requires
skilled intervention that cannot be done by the patient or family
alone. The objective in home healthcare is to help the patient to
return to a level of functioning that allows for self-care. This can
include postsurgical patients requiring wound care, new diabetics
needing help with insulin, patients recovering from an episode of
congestive heart failure, post-injury patients requiring rehabilita-
tive physical therapy, and so forth.
Home healthcare can also be provided to patients with a
life-limiting prognosis, especially if their prognosis is uncertain
or likely to be greater than 612 months. Palliative or hospice
home care is a specialized form of home care that brings to bear
specialized skills and interdisciplinary team care delivery. What
distinguishes palliative home care from general home care is that
the focus of care is not on rehabilitation or achieving a higher level
of functioning, but on helping patients and families to achieve
a preferred level of quality of life while completing their lives.
Hospice home care focuses on the relief of suffering and prepara-
tion for death in a manner consistent with the goals and values of
the individual patient in a family system.
Palliative home care utilizes a broad array of different disci-
plines to achieve these goals. While general home care is mainly
nursing and the rehabilitative therapies, hospice home care adds
more emphasis on psychosocial and spiritual-care providers,
especially social workers and chaplains. There is also a consider-
able emphasis on the use of volunteers to expand care and to pro-
vide practical and emotional support.
Hospice home care uses an interdisciplinary approach to care
delivery. In multidisciplinary teams, care is provided by a vari-
ety of different professionals; however, each discipline provides its
5800
5600
5560
5400
# Hospice Providers US
5300
5200
5150
5000 5000
4850
4800
4600
4400
2008 2009 2010 2011 2012
Figure32.1 Total US hospice providers by year.
250 Section VI palliative and terminal care

Table32.1 Days of Care by Level of Care care system to include training and support in home-based pallia-
tive care. Home-based care teams anchored at the systems hospi-
Level of Care 2012 (percent) 2011 (percent) tals and treatment centers include physicians and nurses trained
in palliative care to back up home-based care workers.
Routine home care 95.0 97.1
In Kerala, India, the Neighborhood Network in Palliative Care
General inpatient care 2.7 2.2 (NNPC) Program4 has developed an effective model, engaging
Continuous care 0.5 0.4 large numbers of volunteers to care for those in their immedi-
ate neighborhoods. In one region, seven physicians and 200
Respite care 0.3 0.3
nurses support over 4000 volunteers in caring for the chroni-
cally ill and dying. The NNPC is an attempt to develop a sustain-
able community-led service capable of offering comprehensive
Table32.2 Location of Death for US Hospice Patients long-term care and palliative care to the needy in the developing
world. In this program, volunteers from the local community are
2012 (percent) 2011 (percent) trained to identify problems of the chronically ill in their area
and to intervene effectively with active support from a network
Patients place of residence 66.0 66.4
of trained professionals. NNPC aims at empowering local com-
Private residence 41.5 41.6 munities to look after the chronically ill and dying patients in that
Nursing facility 17.2 18.3 community, using a primary healthcare model.
Residential facility 7.3 6.6
These and other programs developed to meet the needs of com-
munities provide learning laboratories for how healthcare can be
Hospice inpatient facility 27.4 26.1 redesigned and delivered to meet the needs of an increasingly aged
Acute care hospital 6.6 7.4 and chronically ill population, whether in the developed or devel-
oping world.

own service, and there is not as much emphasis on collaboration.
In interdisciplinary care, there is interaction among the disci-
plines, and the patient and family are part of the team. Each adds
to the picture of the whole patient, and the patient and familys
goals direct the care. An interdisciplinary team values the input of
all members. Though there are boundaries concerning what each
member is expected to do and focus on, there is some blurring
of boundaries. The nurse pays attention to psychosocial concerns,
and the social worker attends to how symptoms may be affecting
the persons ability to meet emotional needs. The home health aide
may be the one the patient wants to pray with, and the chaplain
may hear about the familys financial concerns.2
HOME-BASED CARE AROUND THE WORLD
A recent publication of the World Heath Organization and the
Worldwide Palliative Care Alliance3 estimates that there are
over 16,000 hospice or palliative care teams worldwide, serving
approximately 3million patients. These teams are primarily pro-
viding home-based care.
In many parts of the developing world, the majority of people
may not see a nontraditional healthcare professional from the
time they are born until the time they die. Increasingly, health-
care is delivered by home-based care workers. Many of these
paraprofessionals lack appropriate support and supervision from
competent medical and psychosocial professionals. In Africa, a
significant portion of healthcare is delivered by faith-based orga-
nizations that have created not only networks of congregations but
healthcare delivery systems.
In Tanzania, the Evangelical Lutheran Church operates a net-
work of 18 hospitals and one medical college that serves about 20%
of the countrys healthcare needs. Using their network of congre-
gations, voluntary healthcare workers are recruited to help care
for those in villages with healthcare needs, many of whom have
HIV/AIDS. An effort is continuing to expand this home-based
PSYCHOSOCIAL CARE IN HOSPICE
ANDPALLIATIVE HOME CARE
Psychosocial care is underdeveloped in home care generally. Some
social work services are available, and there are some home-based
mental health programs, but unless there is a major mental health
issue interfering with care, not much attention is paid to the provi-
sion of mental health services. Hospice home care puts increased
emphasis on psychosocial support for both patient and family,
with a focus on family dynamics and life closure issues. However,
even in hospice care, the provision of services beyond some social
work intervention is limited.
There is a lot of provision of emotional support, which is a rather
nonspecific intervention consisting primarily of active listening.
Depending on the clinical skills of the social worker, there may be
quite competent team intervention, but many social workers lack
graduate training and competency in the provision of psychoso-
cial interventions aligned with the specific issues that patients and
families present with. If you consider that few competent thera-
pists could work effectively by themselves in the home setting
when dealing with a family in crisis, with often multiple dysfunc-
tional behaviors, it is no wonder that services are limited.
When working with patients and families in their residential
settings, it is important to focus on the immediate needs that,
when addressed, help support the ability to meet the patients
needs. Trying to resolve long-standing emotional conflicts and
dynamics is usually unrealistic in these situations. The focus must
be on achieving closure and support for whatever adaptive cop-
ing mechanisms can be drawn upon. Sometimes family members
need care to provide care. An overwhelmed caregiver or spouse
may need individualized attention to stress and self-care and may
need help in mobilizing social and emotional resources, instead of
trying to meetall the patients needs alone.
The International Work Group on Death Dying and
Bereavement (IWG) has published Assumptions and Principles

for Psychosocial Care of Dying Persons and Their Families,5
which addresses some of the major concerns faced by patients,
families, and caregivers at the end of life and provides guidance
in dealing with these concerns. These assumptions are summa-
rized here.
Assumptions and Principles
The dying and their families face numerous psychosocial issues
as death approaches. In writing the following assumptions and
principles concerning these issues, we hope to counteract the ten-
dency to focus too much on physical and technical care, to stimu-
late readers to test the following assumptions against their own
experience, and to incorporate them into their work.
By psychosocial we mean the emotional, intellectual, spiritual,
interpersonal, social, cultural, and economic dimensions of the
human experience. Assumptions and principles for spiritual care
have been developed by other work groups of the IWG.
By family we mean those individuals who are part of the dying
persons most immediate attachment network, regardless of
blood or matrimonial ties. The family, which includes the dying
person, is the unit of care. By caregivers we mean those profes-
sionals and volunteers who provide care to dying persons and
their families. We have separated the dying person, the fam-
ily, and caregivers for the purpose of discussion only. Many of
these assumptions and principles apply equally to dying persons
and their families. They may not apply to all cultures and belief
systems.
Issues for Dying Persons
Assumptions
1. Dying persons may choose to acknowledge or not acknowl-
edge their impending death.
2. Dying persons can communicate about their impending
death in different cultural ways, encompassing verbal, non-
verbal, or symbolic ways of communicating.
3. Dying persons have the right to information on their chang-
ing physical status, and the right to choose whether to be told
they are dying.
4. Dying persons may be preoccupied with dying, death itself, or
with what happens after death.
5. Dying persons can have a deep-seated fear of abandonment.
They may therefore continue treatment for the sake of the
family or physician rather than in the belief that it will be of
personal benefit.
6. Many dying persons experience multiple physical and psy-
chological losses before their death.
7. Dying persons exhibit a variety of coping strategies in facing
death.
8. Dying persons generally need to express feelings.
9. Dying persons communicate when they feel safe and secure.
10. Dying persons may find it helpful to communicate with oth-
ers who are terminally ill.
11. Adying persons communication of concern about death may
be inhibited by a number of psychosocial and culturally deter-
mined expectations.
Chapter32 hospice and home care 251
12. Dying persons have a right to be acknowledged as living
human beings until their death.
13. Dying persons psychological suffering may be greater than
their physical pain or discomfort.
14. Dying persons may have difficulty in dealing with the differ-
ent or conflicting needs of family members.
Issues for Families
Assumptions
1. Families have fundamental needs to care and be cared for.
2. The need to care and the need to be cared for sometimes
conflict.
3. People vary in their coping abilities and personal resources.
Moreover, competing priorities may hamper the amount and
quality of care people are able to give.
4. The approach of death may disrupt the structure and func-
tioning of the family.
5. Families need to have information about a dying persons con-
dition, although in cases of conflict his or her desire for confi-
dentiality must be respected.
6. Families often need to be involved with the dying person in
decision-making.
7. Families have a right to know that their affairs will be shared
only with those who have a need to know.
8. Family members need to maintain self-esteem and self-respect.
9. Sexual needs may continue up to the point of death.
10. Families coping with terminal illness frequently have finan-
cial concerns.
11. Faced with death, the family may imagine that changes will be
greater than they are.
12. Families have a need and a right to express grief for the mul-
tiple losses associated with illness and for impending death.
Issues for Caregivers
Assumptions
1. Caregivers need education and experience in addressing the
psychosocial needs of dying persons and their families.
2. Caregivers need to be aware of the dying persons and familys
psychosocial frame of reference in acknowledging and coping
with impending death.
3. Caregivers bring their own values, attitudes, feelings, and
fears into the dying persons setting.
4. Caregivers are exposed to repeated intense emotional experi-
ences, loss, and confrontation with their own death in their
work with dying persons.
5. Caregivers dealing with family groups sometimes experi-
ence conflicting needs and requests for information and
confidentiality.
6. Caregivers may sometimes not communicate with each other
about their own needs and feelings.
Many of these psychosocial principles apply as well to those
living with chronic illness who are not yet at the point of being
252 Section VI palliative and terminal care
identified as a dying person. Non-hospice palliative home care is
not that well developed at this point in the United States. Asig-
nificant number of hospice programs have added palliative home
care for patients who cannot qualify for hospice benefits or who
chose not to enroll in hospice. The services are similar to hos-
pice home care, and hospices provide these programs as a kind
of bridge to hospice; however, experience has shown that many of
these patients never transition to hospice care.
In the United Kingdom there is a system of public health com-
munity nursing and a specialized group of home-care nurses for
cancer patients, referred to as Macmillan nurses. Many of these
nurses provide basic palliative care and may try to help the patient
to get hospice care when needed. Ideally, in any healthcare system,
all professionals should have a basic competency in the principles
of palliative care. There will likely continue to be a need for spe-
cialist palliative care in healthcare because not everyone will be
good at or want to meet the complex and challenging needs of
patients with life-limiting illnesses.
SPIRITUAL CARE IN HOME CARE
Even more limited are spiritual-care services in home care.
Although home-care staff are certainly sensitive to the existence
of spiritual and religious concerns, there is practically no mecha-
nism for chaplaincy service outside the acute hospital, except for
hospice care. Many hospitals have a multidenominational roster
of clergy who visit hospitalized patients, and community clergy
do try to visit seriously ill members of their congregations at home
or in nursing facilities; however, there is usually no organized pro-
gram for the delivery of spiritual-care services outside hospice,
and even those services vary quite a bit.
In 2012 only 4.3% of full-time equivalent hospice staff were
identified as chaplains or spiritual-care providers. There are also
hospice volunteers with a ministerial background who may pro-
vide services, and for the hospice with no chaplains there must
be a staff member, usually a social worker, who provides liaison
with community clergy to make sure that identified spiritual-care
needs are being addressed. One of the problems with use of com-
munity clergy, however, is their lack of training in dealing with
issues of death and dying. We usually assume that fears and con-
cerns about dying are the province of the clergy; however, many
clergy express inadequacy in dealing with these issues, as they are
not taught in seminaries or other schools for priests, ministers,
rabbis, imams, or other religious .
CONCLUSION
Hospice and palliative care delivered in residential settings is
becoming more and more the care that patients and families
receive at the end of life, in spite of the continuing myth that hos-
pice care is a place you go when dying. Increasingly, residential set-
tings are not just personal residences but assisted living facilities,
nursing facilities, group care homes, and other alternative living
arrangements, especially for an increasingly elder population.
Home hospice care is growing rapidly in the United States and
is being embraced by health systems wishing to avoid the large
healthcare costs associated with inpatient facility care. In the
developing world, home-based care workers are the primary
deliverers of palliative care, with backup from interdisciplinary
healthcare professionals.
The need for palliative care worldwide is enormous. Less than
10% of those dying each year worldwide are accessing palliative
care. While palliative care is increasingly available in the devel-
oped world, it is rarely available in the developing world, where
80% of the need exists.3 Some innovative models of home-based
palliative care are developing around the world, but major bar-
riers, including lack of education, lack of access to essential pal-
liative medications, and lack of supportive governmental policies,
continue to limit availability.6
Home-based hospice and palliative care is distinguished by a
focus not only on the physical and medical needs of patients but
a rich understanding of the psychosocial and spiritual or tran-
scendent dimensions of care. Patients and their families, as well as
those who provide care, face many challenges triggered by some
degree of knowledge of impending death and need specialized
intervention that should be guided by the patients goals, needs,
and desire to explore or not explore sensitive psychological, inter-
personal, and transcendent concerns.
We hopefully will see home-based hospice and palliative care
continue to grow in the coming years to meet the increasing
demand for competent decent care7 for those nearing the end of
life. No healthcare system can claim to be comprehensive without
the inclusion of palliative care for those in need.
REFERENCES
1. National Hospice and Palliative Care Organization. NHPCO facts
and figures:hospice care in America. 2013 edition. http://www.
nhpco.org/hospice-statistics-research-press-room/facts-hospice-and-
palliative-care. Accessed April 6, 2014.
2. Connor S, Egan K, Kwilosz D, Larson D, Reese D. Interdisciplinary
approaches to assisting with end-of-life care and decision making.
Am Behav Sci. 2002;46(3):340356.
3. Connor S, Sepulveda C, eds. Global Atlas of Palliative Care at the
End-of-Life I. London; Geneva:Worldwide Palliative Care Alliance
and World Health Organization; 2014.
4. Kumar S, Numpeli M. Neighborhood network in palliative care.
Indian J Palliat Care. 2005;11:69.
5. International Work Group on Death, Dying & Bereavement.
International Work Group on Death, Dying & Bereavement:assump-
tions and principles for psychosocial care of dying patients and their
families. J Palliat Care. 1993;9(3):2932. (Assumptions reprinted with
permission.)
6. Mwangi-Powell F. Palliative care and public health:a perspective
from the African Palliative Care Association. J Public Health Pol.
2007;28:5961.
7. Karpf T, Ferguson T, Swift R, Lazarus, JV, eds. Restoring Hope: Decent
Care in the Midst of HIV/AIDS. London:Blackwell Publishing; 2008.
 CHAPTER33
Canadian Virtual Hospice
A Template for Online
Communication and Support
Harvey Max Chochinov, Mike Harlos, Shelly Cory,
Glen Horst, Fred Nelson, and Brenda Hearson
In 2001, a group of palliative care leaders gathered to consider
whether a web-based platform could address some of the gaps in
palliative care in Canada. They recognized that Canadians need a
reputable source for finding information and support, whenever
they happen to need it, and wherever they happen to live. They
envisioned the creation of a Canadian Virtual Hospice, designed
to address the broad spectrum of palliative care needs and issues
facing patients, their families, healthcare providers, and volun-
teers. From its inception, Virtual Hospice set out to empower
patients and families with trusted information, to support them,
and to provide them with peace of mind when they most needed
it. To facilitate the provision of quality palliative care, Virtual
Hospice set out to provide healthcare providers with evidence-
informed tools to guide quality care. It also proposed the creation
of a virtual knowledge dissemination platform for researchers,
where they could share their latest findings, allowing front-line
healthcare providers to stay on top of important developments.
These experts found an enthusiastic supporter and champion
in Canadian Senator Sharon Carstairs. In 2001, Senator Carstairs
was appointed by Prime Minister Jean Chrtien to the unique
position of Minister with Special Responsibility for Palliative
Care. Her invaluable assistance, coupled with financial invest-
ments by founding partners, including Western Economic
Diversification, Manitoba Health, the Winnipeg Regional Health
Authority, Riverview Health Centre, and CancerCare Manitoba,
allowed the dream of www.virtualhospice.ca and www.portailpal-
liatif.ca to become a reality. The Canadian Virtual Hospice went
online in February 2004, with evidence-based information and
an e-health pioneering feature called Ask a Professional. For the
first time, Canadians had direct access to health specialists online.
Since then, Virtual Hospice has provided anyone with web access
with a safe place to sort through issues related to advanced illness,
death and dying, and loss and grief.
Each year, visits to the Virtual Hospice continue to climb
from 3000 per month in 2004 to 80,000 per month in 2014. People
from over 180 countries have accessed information from Virtual
Hospice. By the end of 2013, more than 1800 questions had been
answered by our Ask a Professional team of palliative experts.
Approximately 40 percent of questions to Ask a Professional come
from healthcare providers seeking guidance on complex or dif-
ficult cases. The others come from patients, families, and friends.
Every person who submits a question receives a detailed, evi-
dence-based, confidential personal response, often with links to
local community resources.
In 2010, Virtual Hospice was an early adopter of healthcare
social media, expanding its operations and reach by creating plat-
forms on Facebook, YouTube, and Twitter for purposes of crowd-
sourcing and knowledge dissemination, becoming a recognized
world leader. Virtual Hospice has become a leader in knowledge
transfer, reaching broad-based international audiences through
networks and offering consultation on the development of knowl-
edge products and palliative care resources.
MODEL FOR VIRTUAL HOSPICE
While no one ultimately wants to visit a website on death and
dying, millions since 2004 have visited Virtual Hospice, seeking
information, expert opinion and comfortany time of day or
night, seven days a weekwhen they needed it most. The design
and development of a virtual hospice reflects the same thoughtful,
meticulous process essential for planning the construction of any
community health facility or residential hospice. Consideration
needs to be given to the following questions:What services will be
offered for whom? What rooms and special features are required?
What are the desired layout and atmosphere? What is the budget?
What staff is necessary to achieve high-quality outcomes?
Some of the key rooms or features of the Virtual Hospice
include the following:
Ask a Professional allows Canadian users to submit questions
that are responded to by our team within three working days
through a secure e-mail server. For liability reasons, this is the
only site feature with access restricted to Canadians. Only the
team sees the question and only that individual has access to
the answer. Typically we do not know the persons name and
254 Section VI palliative and terminal care
only have an e-mail address and postal code (which offers an
approximate location in the country) both required to ask a ques-
tion. We do not encourage back and forth dialogue with website
users, as this would imply a degree of clinical engagementand
responsibilitythat we are not able to provide. Therefore, the
clinical team approaches formulating their responses as a single
opportunity to extend help. These responses are typically con-
structed in three parts: acknowledging where the person is at
and attempting to connect at an emotional level; providing both
general and yet personalized information that empowers the
individual; and helping him or her to connect with local health
services.
Topics articles and Asked & Answered (based on anonymized FEATURES OF ONLINE COMMUNICATION
Ask a Professional interactions) address common questions
and concerns of individuals and families faced with advanced
illness, end of life, and bereavement. All content developed by
the Virtual Hospice team is evidence informed and written at
an accessible language level. In addition, a plain language glos-
sary assists people who are less familiar with the language of the
healthcare system. Arecently added feature, Asked & Answered
for Professionals, gives healthcare providers access to a reposi-
tory of anonymized responses, drawn from questions by health
providers, regarding challenging issues frequently encountered
when caring for dying patients and their families.
The Gallery comprises over 400 video clips on a range of topics.
These videos, which are a unique and rich educational resource,
capture the expertise of palliative care leaders from around the
world and the lived experience of patients and families.
The Discussion Forum offers a safe place for patients and families
to offer and receive peer-to-peer support with others who are
encountering similar experiences. Skilled community modera-
tors maintain the safety and quality of this online forum.
A unique and vital component of Virtual Hospice is its clinical
team of palliative care experts. Disciplines represented on the
clinical team include medicine, nursing, social work, spiritual
care, and ethics. This team functions collaboratively and virtu-
ally, successfully working together through the sites content man-
agement system and e-mail, but rarely face to face. The Virtual
Hospice team epitomizes inter-professional collaboration, based
on trust, role clarity, communication, and shared goals. Ask a
Professional responses are commonly developed by at least two
team members who have researched, formulated, and reviewed
the response.
Similar to the maintenance and upgrading of a home or facil-
ity, the website requires constant vigilance to remain fresh, up
to date, and relevant. Consumers of healthcare information
patients and families, healthcare providers, and educators and
studentsrequire information that is reliable and trustworthy
(evidence informed), accessible (easily navigated and understood),
and timely. The team develops, curates, and reviews all material
posted on the site on a continuous basis. New topics and features
are based on visitor interactions, website analytics, research, new
clinical best practice, and the evolution of palliative care.
The core principles of palliative and end-of-life care are woven
into the design and operations of Virtual Hospice. The site is
patient and family centered; it promotes knowledge and under-
standing, empowering patients and families to advocate for
quality care. The information and support are evidence-informed
and interdisciplinary, addressing the physical, psychosocial, and
spiritual needs of patients and families. In all aspects of the Virtual
Hospice, the preservation of dignity, confidentiality, and privacy
is key. Virtual Hospice supports capacity building among primary
healthcare providers and clinical teams, through national and
international knowledge dissemination, enabling timely access to
the latest research, best practices, and clinical tools, to facilitate
the provision of high-quality care.
CRITICAL CONSIDERATIONS AND
Clarify the Real Question
The Virtual Hospice team receives and responds to many ques-
tions on a wide range of topics. Sometimes questions are brief
so brief and pointed that we are left wondering about the context
that has given rise to the question, thus making it more difficult
to know how to respond. At first glance, some questions seem to
focus on a particular diagnosis, treatment, symptom, or change
in condition; yet, the subtext may suggest more complex issues
or struggles. Sometimes questions are not clear and concise, but
rather are multilayered, touching on physical problems, emotional
turmoil, ethical distress, family upheaval, communication chal-
lenges, and caregiver exhaustion, as in the following example.
Q1:My 82year old wife has been ill for a long time with diabetes,
resulting in heart and kidney disease and many hospitalizations over
the years. She was recently diagnosed with lung cancer, sent home
on palliative care and given three months to live. Her condition var-
ies from day to day. Ihave been caring for her for 5months and am
exhausted. Idont think Ican do this any longer. Unfortunately her
children do not help with her care. Some days Iwish it was over and
then feel guilty for my prayers.
It is important for the clinical team to collectively consider
what question is really being asked. This means being mindful of
the text and subtext, so that responses address what seems to be
the obvious question, as well as other possible underlying con-
cerns. Does the person need an opportunity to vent, with the
question primarily enabling the release of emotional distress?
Is there an underlying question or issue? Will practical infor-
mation or suggestions alleviate some of the stress and allow the
person to move forward in the situation? Just as with in-person
care, online care is about the whole person. Rarely is an Ask a
Professional question just about a physical condition and care.
In most instances, emotional, social, and spiritual elements are
woven throughout, requiring an interdisciplinary approach in
crafting the answer.
The Ask a Professional example above is a good illustration of a
myriad of themes that could lead our response in a few directions.
One goal would be to acknowledge the impact of being a caregiver
over a long period, coupled with the emotional impact of learn-
ing that your wife has a limited time to live. We would normal-
ize the feeling of exhaustion as well as recognize the mixture of
emotional reactions. Providing acknowledgment, understanding,
and some interpretation helps people put things into perspective.
We would also comment on the persons experience of feeling
guilty for my prayers. Our goal is not to ameliorate this feeling
of guilt but to help the person see that it is a very common and

understandable human response. We would also encourage link-
ing with local professional resources, as family and friends may
not understand this thought or would respond by closing down the
discussion by saying something like, dont think that way. The
phrase unfortunately her children do not help with her care sug-
gests many possibilities for what might be happening. It is impor-
tant to not make assumptions and to be explorative. We might
say something like, We know that families all have their own
ways of responding to situations and our experience is that when
families arent able to be involved, many things may be going on.
Some family members may not completely understand the reality
of the situation. For others, non-involvement may be a way of cop-
ing. Withdrawing may be a form of protecting oneself from this
emotionally intense situation. It also could reflect things that have
happened in the past or just the way that this family works. In any
event, if it fits for you, this may be an area where connecting with
the healthcare team may provide an opportunity to meet together
as a family, to help everyone understand the situation and explore
ways of understanding and supporting one another. Our goal is
to be clear, straightforward, sensitive, and respectful of the indi-
vidual and the family. We are not giving advice or quick fixes,
but rather trying to help build a persons capacity to respond to
challenging situations.
Freedom to Be Anonymous
Through the Ask a Professional feature, Virtual Hospice offers a
safe haven for individuals to share what troubles them about their
advanced illness. While the Internet may seem an impersonal
medium for communicating about lifes most difficult questions,
our experience indicates that people are able to ask questions
and reveal struggles that they do not feel free to share anywhere
else; this provides Virtual Hospice a unique lens for identifying
issues, which in turn inform and shape our content development.
As patients and family members seek information on how to deal
with illness, they often write candidly about their worries, stress-
ors, and emotional turmoil. For some, it seems that the anonymity
of the website allows for greater sharing of thoughts and feelings
than speaking with someone in person. Although the site does not
purport to provide therapy, the opportunity for patients and fam-
ily members to give voice, in private, to what is on their minds and
in their hearts has therapeutic benefit.
Q2: This is so hard for me to write about. I hope you can help. My
Mom has ovarian cancer. She has lost so much weight yet her legs are
big and swollen. She doesnt really eat anything. She seems to have
a very sore stomach but says she is fine. She cant really get out of
bed. It is so hard to see the changes in her, and I am not sure what to
expect and when. I am also worried about my Dad and my brother
who is 15 years old. How can I help my Dad? He would be very upset
if he knew I was talking about this or asking for help. He has trouble
talking about it. It feels like I am in a nightmare and wish I could just
wake up and things would be fine.
This sense of anonymity also helps healthcare providers ask clini-
cal questions that they may feel unable to raise in their team or
health setting. Often these questions about difficult situations
can include a sense of moral distress or other indications of the
emotional impact of the work. Virtual Hospice offers a safe and
trusted place for healthcare providers to ask questions regard-
ing treatment and care, when they feel unable to seek guidance
elsewhere.
Chapter33 canadian virtual hospice 255
Q3:We are caring for a 55year old fellow with metastatic melanoma
to the brain. Minimal treatment is possible. What do you think his
life expectancy may be? Iam concerned that we should be doing more
to prepare him and his family for what lies ahead. (Nurse inquiry)
The most common Ask a Professional questions received from
family members revolve around What can I(we) expect? and
How long does this person have to live? Family members are
seeking a road map regarding what to expect, so they can pre-
pare emotionally and logistically. Website analytics consistently
demonstrate that the Topics article When Death Is Near is the
most visited and downloaded website page.
In the sample question (Q2), our response to the daughter
focused around giving her permission and suggestions of how to
connect with support for herself, thus enabling her to be a pres-
ence for her father; and recognizing that he may appreciate more
nonverbal support. For the nurse (Q3), our response focused on
supporting her premise that preparing the patient and family is a
priority, and offered possible strategies and resources to approach
the situation.
Family Involvement in Online Communication
We are impressed by the deep commitment that family members
have to caring well for the one who is facing a life-limiting illness
and the intense honesty with which they seek help to do that. It
is often apparent that members of the family are experiencing a
great deal of stress and may have lost touch with some of their cop-
ing resources at a time when they are most needed.
Q4: My sister is 48 years old, living with advanced breast cancer,
and starting yet another regime of chemotherapy. She seems very
ill with weight loss, increased weakness and sleeping more. Her
sons are 8 and 10 years old and scared. Her husband is naturally
trying his best but struggling; he cant talk to her about what is
happening and seems to have unrealistic hopes for their future
together. The rest of our family seems to be backing away. A good
friend of mine had died after a long illness with breast cancer so
I have been down this path before, she seems to be changing for
the worse. Her husbands family is not involved. How do I help my
sister? Her husband? Her children? Do I mention palliative care?
I seem to be struggling and yet feel there is much more care that
my sister and family need. I dont know what to do and appreciate
your guidance. . .
Our goal is to empower families with information, support, and
links to resources in their community. It is important to remem-
ber that the person who contacted us is embedded in a web of
relationships, including extended family members, neighbors,
friends, and colleagues. The patients illness has a ripple effect that
touches all of these relationships. The responses we provide have
ripple effects; and so we often address issues of communication,
support, and respect with the intention of facilitating mutual sup-
port within the family and larger social network.
We have found the following approaches to be helpful:
Empathize with the stress they are experiencing in a difficult
situation and normalize the challenges arising in communica-
tion, decision-making, and caregiving;
Suggest
ways of starting conversations and identifying what is
most important to them;
Link them to content and resources for making difficult deci-
sions about treatment and care;
256 Section VI palliative and terminal care
Give special attention to the needs of children in the family and
provide resources around communication and support;
Talk about the fact that family members all have their own
unique relationship with the patient;
Recognize that family members will often be at different places
emotionally and behaviorally along the illness trajectory;
Help people to take responsibility for their own responses and
to recognize that they cannot control the reactions and behav-
iors of others;
Affirm their strength, resiliency, and commitment to caregiving;
Encourage self-care and tease out some potential barriers, for
example, pointing out that you need to take care of yourself
before you can help others;
Reaffirm that it is okay to say no or set limits if required;
Encourage them to contact their healthcare team and other
local resources for additional support and ask for assistance
ifneeded.
RESPONDING ONLINE TO GRIEF AND LOSS
Q5:My partner died suddenly a year ago of acute leukemia. Istill
having trouble sleeping and Ijust wish the pain would end. Can you
die from a broken heart?
Individuals asking questions about grief and loss are seeking to
understand more about their experience and often are looking
for reassurance that they are not going crazy. We often educate
people about what is natural to expect and normalize their expe-
rience. The responses, which can involve various expert psycho-
social team members, acknowledge their experience, affirm the
importance of the inquirer reaching out for information and
support, utilize a strength-based approach, and provide links to
local community resources.
People who contact us for bereavement support often feel
stuck in their grieving process. They wonder how to live with
what seems to be an unending grief and whether they will ever be
able to live meaningfully again. What seems to be most helpful
in providing online bereavement support includes the following:
Normalizing the emotional rollercoaster they are experiencing;
Informing
them that the grieving process is individual and
without a timetable;
Encouraging them to be gentle with themselves and practice
good self-care, reclaim the parts of their lives that remain intact
in the midst of their loss, find meaningful ways of remembering
and continuing to love the one who has died, and reach out to
others in the family and community for support.
DEALING WITH THE RISK OF SUICIDE
Q6:My friend has just been told his cancer has spread to his lungs.
He is very depressed. His day-to-day life has really changed; he can-
not do the things he likes to do any more. When Ivisited him yester-
day, he said he doesnt want to live any longer. Iam worried he will
harm himself. How can Ihelp him?
Regardless of the practice setting, suicide risk is taken seriously
and addressed directly. The anonymous and confidential nature of
Ask a Professional allows website visitors to be honest and forth-
right in communicating their feelings and thoughts. Our clinical
team has very limited details regarding the person submitting a
question. A Suicide Prevention Protocol has been developed to
guide the clinical team. It is our clinical and moral responsibility
to intervene in situations where the disclosed information points to
a risk of suicide. In these situations, every effort is made to connect
people to appropriate services. The clinical nurse specialist who
triages the questions involves our psychosocial clinical experts, a
physician, and other Virtual Hospice team members, including cri-
sis counselors, to assist with developing the response. The response
includes links to the crisis team and telephone counseling in the
area where the person lives. The Canadian Association of Suicide
Prevention website (www.casp-acps.ca) is an important resource.
CLINICAL INSIGHTS REGARDING
ONLINEINTERACTIONS
With online communication, nonverbal cues, such as overall
demeanor, affect, body language, eye contact, tone or cadence
of speech, are not available. This can make it very challenging to
appreciate the degree of despair or distress, or the urgency of the
need for support, being conveyed in the question. One must there-
fore be watchful for subtleties in the text, which may provide cues
about its tone. Experienced practitioners will likely have cared for
people in similar circumstances, and thus have some understand-
ing of what the individual may be going through, and how diffi-
cult the circumstances must be. Online communication regarding
palliative and end-of-life care issues requires heightened vigilance
for cues and an empathetic approach.1,2
Brief Questions Are Not Necessarily Simple Questions
The brevity of a question may belie its complexity. Even the most
succinct and apparently straightforward question may have many
relevant emotional, cultural, or spiritual layers, or subtle clinical
nuances. For instance, What is hope? may reflect a despair-
ing struggle to find hope in the context of approaching death, or
might be from a psychology student who has just been given an
assignment on hope in terminal illness. While the question, Is
pancreatic cancer terminal? may seem to warrant a similarly brief
responseYeswe do not know who is behind the question, or
the context of his or her life. Is this someone who has been called
in for follow-up concerning CT scan results? And unlike ongoing,
face-to-face clinical care, in our practice model, there is no oppor-
tunity online to provide continued support and follow-up.
Healthcare providers may also ask short, basic clinical ques-
tions, with the obvious expectation of a similarly concise reply.
However, a basic question likely reflects a degree of unfamiliar-
ity with symptom assessment and management, and may actually
merit a broad and comprehensive reply to address complexities
that may have been missed. Consider the question, What is the
conversion ratio from oral to subcutaneous morphine? We have a
patient with advanced ovarian cancer and refractory nausea and
vomiting who can no longer keep down her oral morphine. While
the question seems straightforward enough, the conversion from
oral to subcutaneous morphine is such a basic, common practice
that it raises concerns about this practitioners assessment that the
nausea and vomiting is refractory. What anti-emetics have been
tried? Has there been an assessment for bowel obstruction? If

there is an obstruction, is there a possible role for octreotide and
dexamethasone in reducing obstructive symptoms? Is the patient
a candidate for palliative surgery notwithstanding her underlying
illness? While the reply to such a question would of course pro-
vide information about changing the opioid route, it would also
respectfully comment on an approach to persistent nausea and
vomiting and the possibility of bowel obstruction.
What is the usual conversion equivalence between mor-
phine and hydromorphone? is another seemly straightfor-
ward question. A simple responseour practice has been
to use a conversion ratio from morphine:hydromorphone of
5:1 i.e. 5 mg of morphine is approximately equivalent to 1 mg
hydromorphonefails to acknowledge the nuances and com-
plexity of the situation. A response on Virtual Hospice would
indicate that opioid conversions are not that simple, and our
answer would likely begin with It depends. . . . The response
would invite the questioner to consider the clinical context, the
existing opioid tolerance, the possibility of underlying opioid-
induced neurotoxicity and hyperalgesia, the current status of
pain control, and the reasons that the medication switch is being
contemplated.
Striking a Balance Between Informing Care
andDirecting Care
Patients, families, and healthcare providers sometimes present
questions pertaining to complex clinical issues, with an expecta-
tion that specific management advice be given. However, provid-
ing such direction or guidance of care would be inappropriate for
several reasons:
1. Virtual Hospice staff cannot undertake a comprehensive clini-
cal assessment, which would need to include a history, physical
examination, and review of existing laboratory and diagnostic
information.
2. Professionalism in consultative practice by physicians involves
the timely sharing of necessary information between the refer-
ring physician and the consultant, beginning with the request
by the referring physician.1 In most clinical questions posted
to the Ask a Professional, there has been no request for advice
from the attending physician; the question usually comes from
family, friends, or non-physician healthcare team members,
such as nursing or pharmacy. In such circumstances, the provi-
sion of case-specific detailed medical recommendations would
be inconsistent with the expected standard of professionalism.
3. We are not in a position to engage or collaborate with other
involved healthcare providers, and may miss valuable informa-
tion about the clinical circumstances.
4. We cannot monitor how people might respond to suggested
interventions, including their effectiveness or adverse out-
comes. Our committed response time of three working days
may result in delays in the patient receiving appropriate clinical
care in evolving clinical situations.
Rather than giving specific advice, Virtual Hospice provides gen-
eral information about the issue, which the patients healthcare
team can consider within the given clinical context. There are
occasions however, when the question compels very specific and
at times urgent advice, due to the potential severity of the clini-
cal problem. When responding to questions from laypersons, this
Chapter33 canadian virtual hospice 257
usually involves the strong suggestion that they immediately con-
nect with their involved healthcare team or contact emergency
services, such as with the question, My mother has lung can-
cer. Icant wake her up today. Is this something that should be
expected to improve on its own? So as not to cause any delay in
people seeking timely medical attention, the Ask a Professional
webpage explicitly states that if your concern is about a situation
that may be urgent, please seek medical attention immediately,
either from your health team or through your local emergency
services.
With questions from healthcare providers, there may be clues
about unrecognized palliative care emergencies, such as acute spi-
nal cord compression, or opioid-induced neurotoxicity. In such
situations, the potential issue would be noted in the reply, along
with considerations for urgent management if deemed appropri-
ate by the involved healthcare team.
Balancing the Volume of Information Provided
As previously indicated, when responding to questions posed
to Ask a Professional, we try to avoid engaging in back-and-
forth communication, such as incrementally eliciting a history
by way of further questions. Doing so would begin to develop
into a clinical assessment process, which is destined to be incom-
plete, due to limitations in physical assessment and information
gathering, as noted above. Instead, we try to provide enough
information in the reply to inform an approach. Sometimes the
answer may be short and simple, while at other times it must,
as noted earlier, be comprehensive. Responses are based on the
teams collective clinical experience, supplemented with detailed
searches of standard (e.g., Pubmed, Scopus) databases. One way
to provide additional information without being overwhelm-
ing is to include links to relevant and credible websites, or to
include attachments of pertinent articles, respecting copyright
requirements.
Avoiding Speculation About the Specific Health
Circumstances of Individuals
Family and friends will often ask questions out of concern about
someone who is palliative, wondering what to expect or the signif-
icance of new symptoms. When responding to these questions, it
is important to avoid speculating about the health circumstances
of the individual, given that family or friends will interpret these
speculations as fact. When it comes to personal health details,
family and friends are encouraged to direct their questions to the
patient.
Imagine telling someone that their relatives prognosis is likely
only a few weeks, when the involved healthcare team has yet to
even begin those discussions with the patient, or when there are
clinical details unknown to us that significantly improve his prog-
nosis. Nonetheless, it is reasonable and understandable to won-
der how long someone might have to live. Such specific questions
can be responded to with broad and general information about
how progressive illness generally affects people, such as decline
in strength and energy. There are general resources on Virtual
Hospice that provide insight regarding estimating prognosis, and
describe what to expect as illness progresses and death gets closer.
Such information can offer perspective on what they are witness-
ing, and can help them discuss these concerns with the involved
healthcare team.
258 Section VI palliative and terminal care
Remaining Mindful That Responses Will Be Shared
People posting clinical questions on Ask a Professional are usually
seeking to understand and improve the palliative and end-of-life
care that someone is receiving. We expect that family or friends
will share our responses with the involved healthcare team, or
that the health provider will share the response with the involved
physician or team. With this in mind, it is important to remain
professional, respectful, and non-judgmental in the reply, and to
remember that we are receiving only one perspective regarding
the circumstances. Consider this question from anurse:
Q7: I have a patient with COPD and advanced lung cancer who is
severely short of breath, and terrified that he will die suffocating and
struggling for air. Iwas at a conference where they talked about how
helpful opioids can be for such patients, but his doctor refuses to
prescribe them, saying that they are addictive and will compromise
his breathing. What can Ido for my patient?
Rather than speak disparagingly about this physicians approach,
it would be more respectful and more likely to retain the integ-
rity of the current healthcare team to indicate that such concerns
by physicians are not uncommon, and we are gradually learning
more about the safety of opioids in advanced respiratory illness.
References and clinical practice guidelines can be provided that
support and encourage the proportionate use of opioids for dys-
pnea, with the hope that these will be provided to the prescribing
physician.
It is possible to acknowledge disappointment, fear, anger, and
frustration expressed by patients, families, friends, and healthcare
providers when care has not met their expectations, while remain-
ing neutral and respectful. The key in these replies is to provide
information and resources to empower effective advocacy in a
manner that will not alienate the involved practitioners.
A Framework for Responding to Clinical
QuestionsOnline
The following is a summary framework for how clinical questions
are responded to in the Ask a Professional portal:
1. Acknowledge the challenging, difficult circumstances that the
individual is facing.
2. Indicate that while we are not able to provide specific clini-
cal advice for individual circumstances, as we are not directly
involved in the care, we are hopeful that the information pro-
vided will help in considering an approach. We encourage the
review of these concerns with the involved healthcare team,
and hope that this will also be helpful.
3. Address the questions/concerns with a view to informing an
approach that might be considered, and empowering the indi-
vidual to discuss potential options with the involved healthcare
team. This may include references to articles available on Virtual
Hospice, and/or links to publications, credible web resources, or
attaching journal articles that are in the public domain.
4. Reaffirm the suggestion that questioners share this informa-
tion with their current healthcare providers, as only they will
be able to consider care options within the current clinical
context.
CONCLUSION
The Canadian Virtual Hospice offers a unique service for dying
patients, their families, volunteers, and healthcare providers.
Virtual Hospice has touched the lives of millions of people, offer-
ing guidance and support, whenever and wherever it might be
needed. Expert palliative care is a relatively scarce commodity,
while the Internet is widely available, transcending geographical
hurdles, cultural diversity, and, to the extent that people can get
online, economic disparities. While Canada has provided a tem-
plate for how a virtual hospice can address a multitude of unmet
needsin view of our success and the profound impact it has had
on all key stakeholders with a vested interest in palliative end-of-
life careother countries might very well consider following suit.
REFERENCES
1. Guide to Enhancing Referrals and Consultations Between
Physicians:Joint Statement of the College of Family Physicians of
Canada and the Royal College of Physicians and Surgeons of Canada.
October 2009. http://www.royalcollege.ca/portal/page/portal/rc/
common/documents/advocacy/conjoint_discussion_paper_e.pdf
2. Stenekes S, Brown S, Hearson B, Cory S. Nursing in the virtual
realm. Int J Palliat Nurs. 2014;20:161163.
 CHAPTER34
Training of Psychologists and
Psychiatrists in Palliative Care
E. Alessandra Strada and William S.Breitbart
INTRODUCTION
Palliative care encompasses a philosophy of care that addresses
the needs of individuals diagnosed with a serious illness and their
families. Living with cancer involves multiple and complex psy-
chosocial, existential, and spiritual challenges for patients and
for the family members who care for them. Palliative care has
been defined as an approach that improves the quality of life of
patients and their families facing the problems associated with
life-threatening illness, through the prevention and relief of suf-
fering by means of early identification and impeccable assessment
and treatment of pain, and other problems, physical, psychosocial,
and spiritual.1 Because it focuses on addressing patients unique
physical, emotional, social, and spiritual needs, palliative care can
be provided as the main modality of care, or it can be provided con-
currently with disease-modifying treatments. An extensive body
of research has emphasized that the psychological and psychiatric
needs of patients receiving palliative care are critically important
to relieve distress and improve quality of life along the illness tra-
jectory, as well as during the death and dying process. Therefore,
addressing these needs represents a crucial component of spe-
cialist palliative care. However, psychiatric symptoms are fre-
quently under-recognized and under-treated in advanced cancer.
Furthermore, differential diagnosis is often complex, especially as
several symptoms of advanced cancer overlap with somatic symp-
toms of depression and anxiety. Additionally, in many cases, con-
ventional pharmacological and non-pharmacological treatments
may not be appropriate or effective for patients with advanced
cancer. In essence, it is ideal for a palliative care team to include
professionals with expertise in recognizing patients and families
psychological and psychiatric needs, especially when cases are
complex.
In this perspective, psychologists and psychiatrists can play
an important role not only to facilitate the patients and fami-
lies adjustment to the demands of treatment, and to help find,
re-create, or re-connect with a meaningful life narrative, even
in the context of advanced and terminal illness. Furthermore,
their clinical expertise in recognizing, assessing, and treating
psychological and existential distress, as well as psychiatric dis-
orders, is especially valuable in several domains. For example,
their expertise is valuable in the diagnosis and management, both
pharmacological and non-pharmacological, of depression, anxi-
ety, delirium, dementia, insomnia, and agitation. They can pro-
vide interventions to improve pain and other physical symptoms,
such as nausea, or dyspnea. In essence, they can have an impor-
tant role addressing the different components of total pain.2
Psychologists and psychiatrists receive extensive training to
recognize psychological and existential distress in individuals
and families and to provide evidence-based interventions that
improve symptoms and quality of life. Therefore, they have the
potential to offer significant and unique contributions to the
developing field of palliative care. However, conventional psychia-
try and psychology trainings currently lack a focus on developing
expertise in working with patients with serious and advanced ill-
ness and their families. This lack of widely available specialized
palliative care training has, thus far, prevented many psycholo-
gists and psychiatrists from identifying palliative care as a subspe-
cialty area and therefore finding consistent opportunities in this
field. Additionally, while psychologists and psychiatrists who are
members of a hospital consultation-liaison service do indeed pro-
vide inpatient services to patients with cancer and routinely offer
recommendations to the treatment team, they may not have the
opportunity to become deeply involved in all phases of the pallia-
tive care delivery and teamwork.
This chapter explores the potential role of psychiatrists and
psychologists in palliative care and highlights specific training
needs that can facilitate their deeper involvement in the field. It
discusses the unique contributions of each discipline to palliative
care, presenting collaborative practice models that can enhance
patients and families well-being.
EXISTING FRAMEWORKS FOR PALLIATIVE
CARE TRAINING AND PRACTICE
The definition and clinical application of palliative care has
evolved significantly over the last decade. Early models identified
palliative care as the comprehensive care of physical, psychologi-
cal, and spiritual needs for patients with advanced illness, who
could no longer benefit from treatment or tolerate it. Therefore,
palliative care was not provided until the patient stopped active
treatment. In recent years, a growing body of research has high-
lighted the benefits of integrating palliative care at early stages of
260 Section VI palliative and terminal care
conventional cancer care, and especially as early as convenient
after a diagnosis of advanced cancer.3,4 Thus, there is an increas-
ing need for specialist palliative care professionals who can meet
patients and families complex needs during the illness trajectory.
As the field of palliative care continues to develop and evolve,
new strategies, skills, and approaches are being developed and
utilized for the benefit of patients and families. The eight domains
of palliative care identified by the National Consensus Project
in 2004, updated in 2009 and again in 2013 (Box 34.1), provide
general practice guidelines that should guide each member of the
interdisciplinary palliative care team.5,6 The national consensus
project brought together major hospice and palliative care organi-
zations in identifying eight domains of practice of quality of care
as well as associated clinical guidelines. These describe in detail
best practices in the different areas of each domain. The latest revi-
sion was the result of a collaboration between several organiza-
tions: the American Academy of Hospice and Palliative Medicine,
the Center to Advance Palliative Care, the Hospice and Palliative
Nurses Association, the National Palliative Care Research Center,
the National Association of Social Workers, and the National
Hospice and Palliative Care Organization. While each profes-
sional involved in palliative care offers unique expertise in his or
her discipline, such as medicine, nursing, social work, chaplaincy,
or psychology, every palliative care clinician should be familiar
with all the domains and should be able to provide basic interven-
tions in all domains from the unique perspective of his or her own
discipline.5,6
Recognizing the importance of palliative care as a distinct dis-
cipline, in 2006 the Accreditation Council for Graduate Medical
Education and the American Board of medical specialties defined
hospice and palliative medicine as a medical subspecialty. In
the United States the standard for physicians and nurses is the
completion of a fellowship in Hospice and Palliative Medicine,
a subspecialty of 11 participating boards. The sponsoring boards
are internal medicine, anesthesiology, family medicine, physi-
cal medicine and rehabilitation, psychiatry, neurology, surgery,
pediatrics, emergency medicine, radiation oncology, and obstet-
rics and gynecology. Physicians who have successfully completed
a residency program in one of the above specialties can apply to
the fellowship. As of 2012, there were 85 fellowship programs in
the United States. The yearlong fellowship offers the opportunity
Box 34.1 Domains of Palliative Care
1. Structure and processes of care
2. Physical aspects of care
3. Psychological and psychiatric aspects of care
4. Social aspects of care
5. Spiritual, religious, and existential aspects of care
6. Cultural aspects of care
7. Care of the patient at the end of life
8. Ethical and legal aspects of care
From:National Consensus Project for Quality Palliative Care.
Clinical Practice Guidelines for Quality Palliative Care. 2013.
to develop expertise in the domains of palliative care. Training
focuses on palliative care competencies in patient and family
care, medical knowledge, practice-based learning and improve-
ment, interpersonal and communication skills, professionalism,
and system-based practice.7 Particular areas of focus are the fol-
lowing: management of refractory pain and other distressing
physical symptoms; diagnosis, differential diagnosis, and treat-
ment of depression, anxiety disorders, delirium, and complicated
grief reactions; recognition and management of complex family
dynamics and conflict; recognition of the unique contribution
of social and cultural factors impacting patients and families
decision-making process and ability to assist in such complex psy-
chosocial processes; and ability to recognize and address ethical
issues pertaining to goals of care and decisions about treatment.
PSYCHOLOGISTS AND PSYCHIATRISTS
ASPALLIATIVE CARE CLINICIANS
The definition of palliative care developed by the Consensus
Document identifies a clear role for psychologists and psychiatrists:
Palliative care is operationalized through effective management of
pain and other distressing symptoms, while incorporating psycho-
social and spiritual care with consideration of patient/family needs,
preferences, values, beliefs, and culture. Evaluation and treatment
should be comprehensive and patient centered with a focus on the
central role of the family unit in decision-making. Palliative care
affirms life by supporting the patient and familys goals for the
future, including their hopes for cure or life prolongation, as well as
their hopes for peace and dignity throughout the course of illness,
the dying process, and death.6
Additionally, the third domain of palliative care, psychological
and psychiatric aspects of care, emphasizes the importance for
the palliative care team to include professionals with skills and
training in the potential psychological and psychiatric impact of
serious or life-threatening illness, on both the patient and fam-
ily including depression, anxiety, delirium, and cognitive impair-
ment.6 The criteria within this domain identify best practice to
meet patients and families needs. They highlight the need for
expert diagnosis and evidence-based treatment not only to recog-
nize and address psychiatric and psychological distress, but also
to promote patients adaptation, growth, and healing.
In the same way that dying is not simply an event, but a pro-
cess that involves physical, psychological, cultural, and spiritual
aspects, so also living with advanced cancer is a complex process
that is demanding and challenging for the patient and the fam-
ily. Palliative care clinicians can help actively manage physical
symptoms and psycho-social-spiritual distress that can negatively
affect quality of life. This comprehensive care can be provided
regardless of stage of diagnosis and prognosis, or availability of
disease-modifying treatments.
When cancer is likely to be cured, patients and families may
often be able to utilize and mobilize their resources to cope with
treatment and the anxieties created to manage it. However, com-
monly, cancer is managed by sophisticated and complex medical
management of the disease and has even come to be regarded as
a chronic disease, in many circumstances. The improvement in
medical management has resulted in an increase in life expec-
tancy for individuals living with cancer. This results in patients
and providers being confronted by unique and prolonged

challenges that can be better served by palliative care approaches
to maintain the best quality of life possible. Thus, it may be help-
ful to consider life as a developing personal narrative that evolves
along an anticipated storyline. The diagnosis of serious and
life-limiting illness abruptly forces the individual off the known
and familiar direction. When a diagnosis is received, there is
often an implicit request that the physician help repair what feels
like a broken story.8 In some cases, the storyline can be contin-
ued, as the disease may be at a very early stage, or may respond
to treatment in ways suggestive that cure may be achieved. But,
commonly, if the medical treatment cannot help the patient
return to the original storyline, patients and families need help
adjusting. Anew storyline develops, to include treatment, inter-
ventions, and therapeutic goals. And an evolving personal narra-
tive can create a new and continued meaningful engagement in
life. While cure is not always possible, a healing personal narra-
tive can be an achievable goal.
In this context, psychologists and psychiatrists play a crucial
role in facilitating the difficult adaptation and coping that are
required. These goals are achieved by deeply understanding
patients and families unique needs, and sources of meaning
and support, as well as sources of distress. Recognizing and cor-
rectly diagnosing and treating psychopathology, such as major
depression, or anxiety disorder, when present, is a crucial com-
ponent of optimal palliative care. In some cases, patients may
have a history of psychiatric illness or subclinical symptoms
pre-existing the cancer. Their symptoms may be exacerbated by
the stresses of receiving the diagnosis and may challenge their
ability to adjust and participate in and cope with treatment.
Optimizing pharmacological treatment of psychiatric illness
for these patients is critically important. Additionally, provid-
ing psychological interventions, such as supportive education,
counseling, and psychotherapy, can effectively help patients and
families to maintain a sense of personal identity and to process
the complex and often challenging emotions raised by their
medical condition.912
RECOGNIZING UNIQUE ASPECTS OF
PALLIATIVE CARE PSYCHOLOGY AND
PSYCHIATRY
Patients with cancer and their families have unique needs that
continually evolve. The experience and manifestation of their
emotional distress and suffering are often characterized by
nuances, which cannot be easily captured by a clinical diagno-
sis of depression or anxiety. Furthermore, much of the existential
suffering and grieving process that can be expected when disease
is advanced, and prognosis limited, does not represent an illness
to be treated, but a complex, developmentally appropriate psycho-
spiritual process to be supported and allowed to unfold.
Recognizing the difference between the development of pathol-
ogy and a normative process is key in palliative care. Conventional
training for psychiatrists and psychologists places significant
emphasis on the diagnosis and treatment of psychiatric illness.
Developing expertise in palliative care requires expanding on
the traditional model of mental illness to include the full range
of emotional distress that is possible when living with advanced
illness and when approaching the end of life.
Chapter34 training in palliative care 261
Psychologists and psychiatrists should become familiar with
the following aspects of palliative care:1316
Palliative care is a philosophy of care that follows the biopsycho-
social spiritual model of care.
Palliative care focuses on improving quality of life for patients
with serious, chronic, and advanced illness by systematically
and comprehensively addressing sources of physical, emotional,
social, and spiritual distress.
Palliative care is provided to the patient and the family, in an
effort to improve all aspects of quality of life, including relation-
ships, coping, and addressing difficulty in communication or
conflict.
Palliative care as a philosophy of care can be provided to
patients, concurrent with curative and life-prolonging treat-
ment, or independent of those treatments.
Palliative care is not only focused on recognizing and relieving
suffering for patients and families. It recognizes, validates, and
supports significant psychosocial and spiritual transformation
and growth in the course of illness. Palliative care providers
support positive experience and personal transformation as a
way of acknowledging the depths and the richness of human
experience, even in the midst of difficulty and chaos.
Palliative care actively addresses psychological and psychiatric
needs of patients and families, by providing assessment, treat-
ment, and coordination of care. It includes grief and bereave-
ment care during illness, during the dying process, and in
bereavement.
While the needs of each patient are unique, certain themes and
scenarios occur more frequently in the palliative care setting. The
following areas are important components of the palliative care
training curriculum for psychiatrists and psychologists:
1. Differential diagnoses relevant to the palliative care setting,
such as differentiating between depression and normative
grief reactions and between depression and demoralization in
patients with advanced illness.
2. Recognizing and addressing complicated grief in palliative care
patients, differentiating it from preparatory grief.
3. Especially important is the ability to provide psychotherapeutic
interventions that can effectively support patients and families.
Interventions should be provided within a flexible and integra-
tive theoretical approach to meet patients needs, recognizing
and respecting cultural, social, and spiritual differences.
4.
Diagnosis and treatment, both pharmacological and
non-pharmacological of psychiatric illness, either pre-existing
the diagnosis of cancer, or developed in the context of the ill-
ness. It is a well-recognized fact that diagnosing depression
and anxiety disorders in patients who have advanced cancer is
especially challenging, because symptoms of advanced illness
frequently overlap with those of anxiety and depression.
5. Clinical evaluation of patients requesting physician-assisted
suicide, or patients who express suicidal ideation; working with
the team to help understand the patients request, develop-
ing a collaborative treatment approach. It must be noted that
passive suicidal ideation often represents a backup plan for
262 Section VI palliative and terminal care
patients with advanced cancer in distress. While suicidal ide-
ation should never be underestimated and should always be
thoroughly explored, it should also be managed therapeutically
and non-judgmentally.
6. Delirium is common and yet under-recognized and
under-treated in patients with advanced cancer. Psychiatrists
expertise in diagnosing delirium subtypes and utilizing medi-
cation judiciously to relieve symptoms represents an invaluable
help for the patient and the family. Psychologists can be instru-
mental in recognizing the presence of delirium and work-
ing collaboratively to provide effective non-pharmacological
approaches.17
7. Understanding of the psychological implications of living with
advanced cancer and approaching death; developing exper-
tise providing psychological interventions to patients who are
approaching death; understanding death and dying as charac-
terized by a complex interplay of biological, psychological, and
spiritual phenomena; furthermore, providing adequate sup-
portive education to family members, facilitating connected-
ness and normal grieving.
8. Recognition that palliative care is not an approach primarily
aimed at fixing, eliminating, or curing symptoms. Rather,
palliative care clinicians strive to achieve the delicate balance
between actively managing distressing symptoms, whether
physical or psychosocial in nature, and their ability to bear
witness to the patients and familys unique story.
9. Ability to recognize, identify, label, address and manage ones
own counter-transference and grieving process, as important
tools in maintaining emotional connection with the patient, as
the patient may continue to decline and approach death. The
focus on developing this ongoing personal awareness is a fun-
damental component to the existing training of psychologists
and psychiatrists. It is even more important when working in
palliative care, and it provides a meaningful difference in their
interactions with patients.
TRAINING OPPORTUNITIES IN PALLIATIVE
CARE FOR PSYCHOLOGISTS AND
PSYCHIATRISTS
The American Psychological Association (APA) has recognized
the importance of creating opportunities for psychologists in pal-
liative care. After a position statement from APA, a task force was
formed in 2001 and some important articles were published as
a result of that impetus. The work of the task force highlighted
the fact that, despite clinical psychologists extensive training in
assessing, understanding, and treating emotional distress, their
presence in palliative care was very limited. Haley etal.18 iden-
tified four times in patients lives when psychologists can offer
meaningful contributions:before a diagnosis of life-limiting ill-
ness, after a diagnosis of life-limiting illness and during treat-
ment, in advanced disease and during the dying process, and in
bereavement.
In the course of doctoral training, clinical psychologists develop
expertise in assessing and diagnosing psychological distress and
psychiatric illness and delivering a wide range of psychologi-
cal interventions, tailoring them to the unique needs of patients
and families. Integration of approaches such as psychodynamics,
mindfulness, and psychospiritual approaches in psychotherapy
can allow psychologists to deepen their work with patients and
families. Furthermore, the evidence indicating the potential of
hypnosis and other integrative approaches for the management of
pain and other symptoms in patients with cancer is growing.19,20
Psychologists providing palliative care to cancer patients will
benefit from obtaining advanced training in the biological and
psychosocial implications of the different types of cancer, as well
as available treatments.10 Furthermore, it is important that they
become knowledgeable in the pharmacological treatments of
psychiatric distress in palliative care. While psychologists do not
prescribe medications, they can play an essential role in recogniz-
ing the need for a medication evaluation. Additionally, they may
be in an excellent position to work with patients to understand
their concerns about medication, to enhance treatment compli-
ance, and to work therapeutically with patients, facilitating the
integration of pharmacology and psychotherapy.11,16 The majority
of doctoral programs in psychology require students to acquire
basic knowledge of psychopharmacology as it pertains to psycho-
tropic medications. The curriculum generally includes discussion
of classes of psychotropic medications, basic pharmacodynam-
ics and pharmacokinetics, and use of medications to treat most
psychiatric illnesses. As mentioned above, this basic knowledge
of psychotropic medications needs to be emphasized as essential
for all psychologists working with patients who are medically
ill. It allows them to discuss the implications of taking medica-
tion with patients, helping them cope with adverse effects, and
improving overall treatment compliance. This basic knowledge
generally does not allow psychologists to discuss recommenda-
tions for medication or to develop full collaboration with medical
providers. On the other hand, in recent years a postdoctoral mas-
ters degree in psychopharmacology for licensed psychologists has
become available. It allows psychologists who have received exten-
sive and structured training in psychopharmacology to engage in
a more productive dialogue with medical providers and possibly
discuss recommendations for psychotropic medication, depend-
ing on state regulations, working with patients to improve compli-
ance. The Psychopharmacology Exam For Psychologists (PEP) is a
national exam testing competence, developed by the APA.21 This
specialized training can prove helpful when working as members
of interdisciplinary palliative care teams.
In the United States, a formal training program in pal-
liative care open to psychologists needs to be mentioned: the
Veteran Administration (VA) Medical Center Interprofessional
Fellowship program in Hospice and Palliative Care, which is
a one-year fellowship open to physicians, nurses, social work-
ers, and postdoctoral-level clinical psychologists. Psychology
fellows have the opportunity to function as members of a pal-
liative care team and to develop expertise in palliative care and
end-of-life care, including hospice. They join other fellows, such
as board-certified physicians, advance practice nurses, licensed
social workers, chaplains, and post-residency pharmacists.
Fellows participate in all activities related to caring for patients
with advanced illness, patients approaching death, and their fam-
ilies in the inpatient and outpatient setting. The VA interprofes-
sional fellowship represents a unique training opportunity, being
also approved by the APA. The VA setting is unique in that it
allows a psychologist to develop the skills necessary to become an

effective member of palliative care and hospice teams. The fellows
from the different disciplines of medicine, nursing, psychology,
social work, chaplaincy, and pharmacist join the core and stable
members of the team. Part of the learning experience is interdis-
ciplinary, where all the fellows attend lectures addressing various
aspects of palliative and end-of-life care. Additionally, each fel-
low receives individualized training and supervision within his
or her own discipline. The overall goal of training is that the fel-
low will develop a breath and depth of expertise in palliative care
and hospice that includes providing assessment and interventions
to individual patients and families along the disease continuum
from diagnosis to death, and in bereavement.
Board certified psychiatrists have the opportunity to com-
plete one of the available fellowships in Hospice and Palliative
Medicine. As medical professionals, they are trained to offer
patients sophisticated pharmacological management of psychi-
atric illness and subclinical syndromes, which is essential in
advanced cancer. 22
In recent years, several psychosocial interventions have been
developed for palliative care populations, targeting the psychoso-
cial and existential suffering common in advanced cancer. These
evidence-based approaches, such as meaning centered psycho-
therapy23 and dignity therapy,24 have shown to be very effective
in relieving patients emotional distress and promoting personal
growth, and they are becoming increasingly integrated into
mainstream cancer care and palliative care. It is also important
to note that most psychotherapy approaches and orientations can
be adapted to meet the needs of a palliative care population and
the settings constraints imposed by the palliative care setting,
for example hospital setting, outpatient palliative care clinic, or
long-term care units.1012 Texts focusing on the psychosocial and
existential aspects of palliative care are available. Additionally,
Palliative and Supportive Care25 needs to be mentioned as the first
international palliative care journal that focuses on the psychiat-
ric, psychological, and existential aspects of palliative care.
SUMMARY
Palliative care is a comprehensive approach to cancer care that
starts at the time of diagnosis and continues throughout the
course of the illness trajectory, including advanced cancer and
the death and dying process. Its overall goal is to allow patients
and their families to experience the best quality of life possible
for as long as possible. In order to accomplish this goal, several
challenging and multidimensional needs must be recognized and
addressed. Cancer patients have complex medical needs, requir-
ing optimal management of pain and other distressing physical
symptoms. Furthermore, palliative care recognizes that cancer
patients also have psychological, psychiatric, and existential needs
that significantly impact their quality of life and that of their fam-
ily. Addressing these needs is essential to the prevention and relief
of suffering, especially when the cancer is advanced and the prog-
nosis is limited.
Due to their extensive training and expertise in recognizing and
treating psychosocial and existential needs, psychologists and psy-
chiatrists can offer unique contributions to improving the quality
of life of cancer patients and their families. The presence of men-
tal health experts on the palliative care team allows for prompt
Chapter34 training in palliative care 263
recognition and treatment of psychopathology with multidimen-
sional and evidence-based treatment approaches. Additionally, it
facilitates and supports normative psychological development and
adjustment to the illness. Both aspects are vital to competent and
compassionate cancer care.
REFERENCES
1. Sepulveda C, Marlin A, Yoshida T. Palliative care:the World
Health Organizations global perspective. J Pain Symptom Manag.
2002;24(2):9196.
2. Clark, D. Total pain:the work of Cicely Saunders and the hospice
movement. APS Bull. 2000;10(4):1315.
3. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson
VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA,
Lynch TJ. Early palliative care for patients with metastatic non-
small-cell lung cancer. N Engl J Med. 2010;363(8):733742.
4. Yoong J, Park ER, Greer JA, Jackson VA, Gallagher ER, Pirl WF, Back
AL, Temel JS. Early palliative care in advanced lung cancer:a qualita-
tive study. JAMA Intern Med. 2013 Feb 25;173(4):283290.
5. Pies R. The anatomy of sorrow:a spiritual, phenomenological, and
neurological perspective. Philos Ethics Humanit Med. 2008;3:17.
6. National Consensus Project for Quality Palliative Care. Clinical
Practice Guidelines for Quality Palliative Care. 2013.
7. http://www.aahpm.org/fellowship/default/competencies.html.
Accessed March 31, 2014.
8. Brody H. My story is broken; can you help me fix it? Medical ethics
and the joint construction of narrative. Lit Med. 1994;13:79.
9. Strada EA. The Helping Professionals Guide to End-of-Life
Care:Practical Tools for Emotional, Social, and Spiritual Support for
the Dying. Oakland, CA:New Harbinger; 2013.
10. Strada EA, Sourkes BM. Principles of psychotherapy. In:Holland J,
ed. Psycho-Oncology. 2nd ed. NewYork:Oxford; 2010:397401.
11. Chochinov HM, Breitbart W., eds. Handbook of Psychiatry in
Palliative Medicine. 2nd ed. NewYork:Oxford University Press; 2012.
12. Breitbart W, Alici Y. Psychosocial Palliative Care. NewYork:Oxford
University Press; 2014.
13. Irwin SA, Ferris FD. The opportunity for psychiatry in palliative
care. Can J Psychiat. 2008;53:713.
14. Strada EA. Psychology in Palliative Care. NewYork:Oxford; in press.
15. Zisook S, Shear K. Grief and bereavement:what psychiatrists need to
know. World Psychiatry. 2009;8:67.
16. Strada EA. Grief and Bereavement in the Adult Palliative Care Setting.
NewYork:Oxford; 2013.
17. Breitbart W, Alici Y. Evidence-based treatment of delirium in
patients with cancer. J Clin Oncol. 2012:30;12061214.
18. Haley WE, Larson DG, Kasl-Godley J, etal. Roles for psycholo-
gists in end-of-life care:emerging models of practice. Prof Psychol.
2003;34:626633.
19. Jensen MP, Gralow JR, Braden A, Gertz KJ, Fann JR, Syriala KL.
Hypnosis for symptom management in women with breast cancer:a
pilot study. Int J Clin Exp Hypn. 2012;60(2):135159.
20. Elkins G, Fisher W, Johnson A. Mind-body therapies in integrative
oncology. Curr Treat Options Oncol. 2010;11(34):128140.
21. http://www.apapracticecentral.org/ce/courses/pep-info.aspx.
Accessed April 1, 2014.
22. http://palliativemed.org/Palliative-Care-Psychiatry-Program.
Accessed March 31, 2014.
23. Breitbart W, Appelbaum A. Meaning-centered group psychotherapy.
In:Watson M, Kissane D, eds. Handbook of Psychotherapy in Cancer
Care. NewYork:Wiley-Blackwell; 2011:137148.
24. Horne D, Watson M. Cognitive behavioral therapies in cancer care.
In:Watson M, Kissane D, eds. Handbook of Psychotherapy in Cancer
Care. NewYork:Wiley-Blackwell; 2011:1526.
25. Palliative and Supportive Care, William Breitbart, MD, editor-in-
chief, Cambridge University Press, 2003.
 SECTION VII

Psychiatric Disorders

35 Psychiatric Emergencies 267 42 Post-traumatic Stress Disorder

Andrew J. Roth and Talia R. Weiss Wiesel Associated with Cancer Diagnosis
and Treatment 323
36 Adjustment Disorders 274
Matthew N.Doolittle and Katherine N.DuHamel
Madeline Li, Sarah Hales, and GaryRodin
43 Somatic Symptom and Related Disorders,
37 Depressive Disorders 281
Factitious Illness, and Malingering in the
Peter Fitzgerald, Kimberley Miller,
Madeline Li, and GaryRodin
Oncology Setting 339
Ted Avi Gerstenblith, Lucy E.Hutner, Felicia
38 Suicide 289 A.Smith, and Theodore A.Stern
Hayley Pessin and William S.Breitbart
44 Cancer Care for Patients with
39 Anxiety Disorders 296 Schizophrenia 345
Joseph A.Greer, James MacDonald, and Lara Traeger Linda Ganzini and Anne F.Gross
40 Delirium 304 45 Difficult Personality Traits and
Yesne Alici, Alan T.Bates, and William S.Breitbart Disorders in Oncology 356

41 Substance Use Disorders 317

John D.Wynn
Kenneth L.Kirsh, Adam Rzetelny, and
Steven D.Passik
 CHAPTER35
Psychiatric Emergencies
Andrew J.Roth and Talia R.Weiss Wiesel
INTRODUCTION
Psychiatric emergencies in the oncology setting occur as unfore-
seen medical and/or psychiatric problems that call for immediate
action to ensure the safety of patients or others.1 These emergen-
cies result from dangerous behaviors or altered mental states,
such as thought, mood, or behavioral disturbances. Successful
outcomes depend on a number of factors:the setting; the avail-
ability of trained staff prepared to manage these emergencies and
medical comorbidities;2 maintaining safety; and obtaining infor-
mation and medical workup quickly in order to understand the
cause of the emergency.
Patients often exhibit intense behaviors or emotions such as
aggression, violence, impulsivity, and agitation3 before or during
a psychiatric emergency. Identifying these behaviors in the earli-
est phases can assist in the safest management of the patient and
the situation. Emergent behaviors include actions such as pulling
out tubes or intravenous lines, becoming demanding or threaten-
ing, restlessness, pacing back and forth, destructiveness, impul-
sivity, violence, acting on psychotic symptoms, suicidal behavior,
or threatening potential harm to self or others (Box 35.1). Some
psychiatric symptoms such as acute psychosis, paranoid ideation,
manic agitation, menacing behavior, irritability, extreme anger,
panic attacks, suicidal ideation, or hysterical or dramatic behav-
ioral exhibitions may constitute an emergency. Though the symp-
toms may look like psychiatric disorders, psychiatric emergencies
in the cancer setting, and in the elderly in general, are often related
to patients cancer diagnosis, cancer treatment, or other medical
comorbidities,4,5 or to family members or friends and their reac-
tions to the events and situations of their loved ones.
Behaviors or Situations That May Constitute
Psychiatric Emergencies
Strategies to handle a psychiatric emergency can be implemented
by the oncologist or the primary care team initially, with eventual
access to a psychiatric consultant. It is important to know (1)what
types of behaviors, diagnoses, and symptoms lead to emergency
psychiatric consultation in the cancer setting; (2) how to man-
age psychiatric emergencies in patients with agitation related to
delirium, cognitive impairment disorders, anxiety disorders,
depression, and suicidal ideation or attempts in the cancer setting;
(3)how to communicate the indications and suggestions for using
physical restraints in the cancer setting; and (4)how to assess for
capacity and/or refusal of treatment in the oncology setting.
Common Psychiatric Emergencies
The most common psychiatric emergencies in medical settings are
related to drug or alcohol intoxication or withdrawal syndromes,6
delirium (due to opioids, steroids, or central nervous system
[CNS] disease), suicidality (due to depression, akathisia, or suffer-
ing related to pain and debilitation, disinhibition, or confusion),
panic attacks, manic syndromes (usually due to medications), or
patients attempting to leave the hospital against medical advice
(AMA) or refusing treatment. Psychiatric emergencies in older
patients can be life-threatening and can be secondary to depres-
sion, suicidal ideation and attempts, behavioral disturbances sec-
ondary to underlying medical conditions, substance abuse, elder
abuse, and medication-induced adverse events.7
Risk Factors Leading to Different Types
ofPsychiatricEmergencies
There are six main risk factors for emergent psychiatric compli-
cations in oncology settings (Box 35.2):(1)advanced stage of dis-
ease, (2)unresolved physical symptoms, (3)disease-related factors,
(4)treatment-related factors, (5)premorbid psychiatric diagnoses,
and (6)social factors.8 Pain, depression, and delirium all increase in
patients with advancing disease,9,10 along with uncontrolled nau-
sea, fatigue, and functional limitations, and thus may lead to acute
psychological distress. Disease or medically related factors such
as CNS spread, brain cancer, or metabolic abnormalities are more
likely to result in delirium or cognitive disorders such as dementia.
Treatment-related factors such as recent use of corticosteroids,11,12
chemotherapeutic agents (vincristine, vinblastine, asparaginase,
intrathecal methotrexate, interferon, interleukin, amphotericin),13
and whole brain irradiation14 have all been associated with the
Box 35.1 Behaviors or Situations That May Constitute
PsychiatricEmergencies
Violence or threatening harm to others
Suicidal ideation or attempts
Restlessness, agitation, or pacing
Threatening or demanding behavior
Pulling out IV or other medical or surgical tubes
Manic behavior
Refusal of urgent treatment or questions of capacity to make
medical decisions
268 Section VII psychiatric disorders
Box 35.2 Risk Factors for Psychiatric Emergencies
Advanced stage of disease
Agitated depression
Unresolved physical symptoms
Disease or medically related factors
Treatment-related factors
Premorbid psychiatric disorders
Social factors
History of violence or harm to self
Substance (use or abuse)
development of agitation, panic symptoms, depression, delirium,
or dementia. In addition, finding out about progression of disease
or the failure of a treatment regimen can sometimes lead to strong
emotional reactions. Treatment for severe pain with high-dose
opioid infusions can be associated with acute confusional states
(delirium), particularly in the elderly and terminally ill. Premorbid
psychiatric conditions, such as major depressive disorder, bipolar
disorder, a history of substance abuse, or major psychotic illness,
increase the risk of psychologic distress during cancer treatment.
In addition, patients with pre-existing anxiety disorders, panic
disorder, or phobias are likely to experience exacerbations dur-
ing cancer treatment. Recent bereavement and past experiences of
loss of a family member with cancer, as well as other recent losses,
are important considerations. The role of social support has been
shown to serve as a buffer for the degree of psychologic distress and
hopelessness experienced by cancer patients and risk for suicide, as
well as aiding in the amelioration of these symptoms.15,16
AGITATION
Causes
Perhaps the most frightening situation for patients, staff, and fam-
ily is to see a patient who is out of control and inconsolable. A
chief goal during a psychiatric emergency is to evaluate for risk
and safety17 and bring calm to a chaotic situation. It is useful to
assume a medical cause of agitation or confusion in the oncol-
ogy setting until proven otherwise, since this is considerably more
common than functional causes. The following problems may
present first as psychological symptoms yet may become medi-
cal emergencies with behavioral changes: progression of disease
over a brief period of time; confusion from CNS involvement or
brain metastases; restlessness from pulmonary emboli; anxiety or
suicidal ideation from uncontrolled pain; vague somatizing from
intra-abdominal malignancies; anxiety or depression from meta-
bolic abnormalities (i.e., hyperthyroidism, hypoglycemia, hypo-
calcemia); anxiety, akathisia, depression, or manic symptoms
due to medications and other cancer treatments (i.e., opioids,
corticosteroids, anti-emetics causing akathisia, chemotherapeutic
agents, whole brain irradiation); and a varied number of symp-
toms including paranoia, disorientation, and mood instability
from substances of abuse (i.e., alcohol intoxication or withdrawal,
delirium tremens, cocaine use). It is not uncommon to be called to
see a patient for agitated depression, only to find on examination
that the patient is delirious (see Chapter 40, Delirium). Though
a patient with melancholic depression can also be delirious, an
emergent psychiatry consult is not usually requested, as there is a
smaller likelihood of harm.
Case
John is a 73-year-old man with metastatic prostate cancer. He was
admitted to the hospital three days ago for management of bony
metastatic pain. Two weeks before admission he was started on
escitalopram 10 mg daily by his oncologist for depressive symp-
toms related to his pain and inability to enjoy his usual activi-
ties. He denied suicidality, stating he wanted to spend more time
with his grandchildren. On admission to the hospital he received
OxyContin and Oxycodone rescues. Two days later, the patient was
noted to be disoriented to place and time by the nursing staff. He
tugged gently at his IV line, thinking it was a tow rope anchoring
his boat. Later, in the middle of the night, he thought he saw Satan
in his room. He yelled, You wont get me you bastard. Im going to
beat you to the punch. He grabbed a bottle cap off the tray table and
superficially cut his wrist. The patient was immediately placed on
1:1 observation. An emergent psychiatric consultation was called.
The patient had no recollection of or cutting himself. His opioids
were stopped and he was given haloperidol IV.
This case is an illustration of a patient with an agitated delir-
ium in the context of depression. His acute symptomatology
should be treated as a delirium and safety maintained once
suicidality is noted. It is not uncommon for impulsive suicide
attempts to be made in the context of delirium.
Management of the Agitated Patient
Sufficient numbers of well-trained security, nursing, oncology,
and psychiatric staff will be most advantageous in handling a
psychiatric emergency.2 The following guidelines will help in the
management of psychiatric emergencies (Box 35.3) and to calm
agitated patients (Box 35.4).
Ideally, the primary oncologist treating the patient should be
present since he or she knows the medical details best and is
known to the patient as a familiar face and voice. In managing
an agitated patient, try talking to the patient to decrease agitation
and calm excited behavior. The environment can play a key role in
exacerbating or reducing the agitation a patient is experiencing.
When a patient has been agitated, threatening, expressing suicid-
ality, or violent in the hospital, it is important to have security or
nursing staff search the patients room to remove any dangerous
or sharp objects, as well as search for substances of abuse; security
or other staff should be available for constant observation until the
situation is clearly safe. This may mean having security or nursing
staff in or near the patients room and available to observe vis-
its from family or friends. When agitation or suicidal behavior is
a concern in an outpatient clinic, similar guidelines must be in
place. If you are responding to a call from family managing the
patient at home, similar suggestions for constant observation and
access to 911 may be recommended. Reducing the commotion of
a dangerous situation can be accomplished in several ways:iso-
lating the patient from other patients; escorting the patient to a
quiet environment with security if needed; clearing out a lounge
area for the patient to allow for fewer distractions; and putting the

Box 35.3 Guidelines for Managing Psychiatric Emergencies
In hospital:Call security and support staff for 1:1 observation
if needed
At home:Have family bring patient to the emergency room or
call 911
Gather information about the nature of the emergent
behavior:
Assess mental status of patient
Assess timeline of change of behavior
Assess medical status of patient
Assess past or current psychiatric history, including alco-
hol or substance use
Assess history of agitation, confusion, suicidality, or
violence
Develop
a working differential diagnosis as early as possible
Assume a medical cause of agitation or confusion until
proven otherwise
Identify one staff person who can direct management of the
emergency
Acalm demeanor is critical to safety for the patient, family,
staff, and others
Enlist the help of family, friends, or staff members whom the
patient trusts to reassure the patient
Give clear and concise instructions to all staff involved
patient in a single room to decrease distractions and danger to
others. Assessment of the patients mental status, the timeline of
changes in behavior, the medical status of the patient, past or cur-
rent psychiatric history including drug and alcohol use, as well as
a history of agitation, violence, or suicidality in the past, are cru-
cial for optimal management of the emergent situation. Consider
Box 35.4 How to Calm an Agitated Patient
Talk to the patient to calm excited behavior
Isolate the patient away from other patients and visitors
Escort the patient to a quiet room, with security, if needed
Determine whether family or friends calm or agitate the
patient
Identify a staff member whom the patient trusts to help with
patient
Ask those who are the target of paranoia not to participate
temporarily
Offer the non-choice choice:
Of a less or more autonomous, invasive, or restrictive
choice
The more rational the patients thinking, the more likely he
or she will choose the less intrusive option.
Chapter35 psychiatric emergencies 269
whether familiar family or friends are helping to calm the patient
or hindering by inadvertently agitating the patient. Consider
which staff members the patient trusts (e.g., male, female, older,
younger, trusted before, speaks the same language) and also ask
staff members of whom the patient is suspicious not to participate
temporarily, if possible.
Calm, concise explanations help the patient cooperate. Allow
the patient to express concerns or frustrations to reduce fears
and lack of cooperation.18 It is useful to start with the least inva-
sive management plan to safely calm the patient; explain the plan
to the patient with other staff present. If he or she resists, offer
the patient the non-choice choice:one of two or three accept-
able modes of action described in a progression of options that
suggests a spectrum of more to less freedom to the patient. For
instance, Because you have been so agitated and are in danger
of hurting yourself or someone else, you will need to take this
calming medicine, haloperidol. You can take the liquid medica-
tion, haloperidol, by mouth, or the security guards will have to
restrain you so we can give you an injection of the medication.
Which would you rather have? or, We can walk to your room
so you can lie down and calm down, or the security guards will
have to restrain you and escort you to your room. Each time,
you offer less or more autonomous, invasive, or restrictive
choices; the more rational the patients thinking, the more likely
it is that he or she will choose the less intrusive or restrictive
option. Allow the patient to express concerns or frustrations
to reduce fears and to improve cooperation. Explaining to the
family what is happening can be reassuring for them. Reviewing
the events with the staff afterward can be a good learning and
team-building experience.
Use of Restraints in Psychiatric Emergencies
There are many types of physical restraints used in the oncology
setting. Medical immobilization devices, as well as postural and
adaptive supports to prevent and protect against injuries, do not
usually require physicians orders. Management of severely agi-
tated behaviors is obtained either by two-point (arms) or four-point
(arms and legs) restraining devices. In some institutions, soft pad-
ded hand mitts are used to prevent a patient from pulling out tubes
or lines, or from scratching themselves. Four-point restraints usu-
ally require a physicians (or other licensed medical professional)
order that must be renewed every four hours. Familiarize your-
self with your institutions legal policies and restraining orders.
Follow the guidelines for how often vital signs need to be checked
and restraint sites rotated to decrease the likelihood of injury to
the patient. Apatient in four-point restraints should remain under
1:1 constant observation status and requires limb checks every 15
minutes; these restraints should remain on as briefly as possible.
Changing to less restrictive options, when it is safe to do so, is
desirable.
Medication:Chemical Sedation
Psychotropic medications should not be used as chemical
restraints just to keep patients quiet. Care should be given to
aspects of the patients medical condition that may compromise
safety, such as low platelet count, poor bone density, and frailty,
when physical restraint is needed in order to give medication to
control agitation. Having a sufficient number of well-trained staff
to secure each limb is imperative; thus, four security guards or
270 Section VII psychiatric disorders
strong staff members might be needed to escort the patient and
then hold each limb safely while a medication is given by injection,
or while the patient is put into restraints. Periodic practice of psy-
chiatric codes may help a multidisciplinary team to become more
comfortable with the procedure, and with each other.
Documentation
It is important to document the details of the medical and psychi-
atric situation, the reason for emergent intervention, as well as the
date and time on all chart notes. It is important to also include the
following:
Alist of the patients medications
Pertinent lab results, including electrocardiogram (EKG) report
and cardiac conduction intervals QTc
Psychiatric history including alcohol and drug abuse
History of self-destructive or violent behavior
Pertinent mental status examination findings
Your assessment of the likelihood of the patient causing harm to
himself or others
Whether you feel there is a need, or not, for constant observa-
tion; why or why not
Whether restraints are required and why.
Patients Response to Different
Interventions Over Time
All staff should have ready access to useful phone numbers such as
hospital security, hospital legal affairs, patient representatives or
hospital administration, social work, emergency room or urgent
care center, outside emergency telephone numbers, rapid response
teams, central intake for psychiatric admissions, and chaplaincy.
For outpatients in clinic or office settings, resources may be lim-
ited, but security should be available; a call to 911 for assistance
is always available for local police and ambulance resources. It is
important to have a psychiatrist available for immediate call who
is familiar with the common as well as unusual presentations and
management of agitation, withdrawal states, and suicidality in
cancer patients, and who can work with you and the team.
Psychopharmacological Management
of the Agitated Patient
The following course of action has been found to be helpful for
treating agitated patients:haloperidol, an antipsychotic agent, is
the drug of choice for agitated medically ill patients.18 If possible,
check vital signs and obtain an electrocardiogram (EKG) to moni-
tor QTc intervals. Low doses of haloperidol are usually effective
in targeting agitation, paranoia, and fear that have physiologi-
cal causes. Parenteral doses are approximately twice as potent as
oral doses. Acommon strategy is to add low doses of parenteral
lorazepam, which may help to rapidly sedate an agitated deliri-
ous patient, to a regimen of haloperidol. Lorazepam given alone is
not a good choice when given for agitation caused by delirium.19
Haloperidol has warnings about cardiovascular and neurologic
side effects, especially in older patients with dementia; therefore
documentation of why this treatment is being used (i.e., other
means are not indicated, not available, or ineffective) should be
clearly stated in the chart.
Atypical antipsychotic medications with sedating qualities that
are helpful with agitated delirious patients include olanzapine
and quetiapine.20 These antipsychotics have fewer extrapyrami-
dal symptoms (EPS) and cardiovascular problems than haloperi-
dol, risperidone, or chlorpromazine. Olanzapine and risperidone
may be given in orally disintegrating tablets; ziprasidone, another
atypical antipsychotic, may be given intramuscularly. However,
none of the atypical antipsychotics is available in intravenous
(IV) form. Elderly or frail patients may require lower doses of
these medications.
When the combination of haloperidol and lorazepam, or sedat-
ing atypical neuroleptics such as olanzapine or quetiapine, are
ineffective for calming an agitated or combative patient, consider
using chlorpromazine intravenously. Be aware that this medicine
may have hypotensive and anticholinergic side effects. Again, doc-
umentation in the chart is important when using medications for
off-label purposes or in unofficially sanctioned formulations (e.g.,
intravenously) when other more standard trials have not been
effective. Monitor extrapyramidal side effects and EKG QTc for
all antipsychotics.
After successfully calming the agitated patient, try to expe-
dite any needed medical workup that may explain the agitation
or delirium (i.e., brain magnetic resonance imaging [MRI], com-
puted tomography scans, lumbar puncture, other blood tests,
X-rays, urinalysis); use the least amount of medication needed to
keep the patient from harming self or others. Acommon approach
to management of confusion caused by opioid therapy is to lower
the dose of the opioid if the patients pain is controlled, or to rotate
to another opioid regimen that may be better tolerated. Continue
to monitor the patient closely to see whether more antipsychotic
medication is needed to keep the patient and staff safe and to assure
that the patient is not having side effects from the medications.
ANXIETY-RELATED EMERGENCIES
Causes
Early recognition and treatment of severe anxiety are essential
for optimal care and to hopefully prevent an emergent situation.
Understanding the source(s) of the many possible causes of anxiety
is important in choosing an appropriate treatment. Situations that
lead to anxiety-related emergencies include receiving unexpected
bad news or anticipating frightening situations. Patients may expe-
rience panic symptoms (i.e., pacing, heart palpitations, feeling the
need to escape, shortness of breath, or a sense of impending doom).
In addition, medical problems such as uncontrolled pain, abnormal
metabolic states, endocrine abnormalities, and medications can
produce emergent anxiety, intoxication, and withdrawal states.2
Patients with severe anxiety who are extremely fearful, or are
unable to absorb information or cooperate with procedures,
require psychological support, medication, and/or behavioral
interventions to reduce symptoms to a manageable level. It is
important to note the duration and intensity of symptoms, the
level of impairment of normal function, and the ability to comply
with treatment.
Management
The initial management of an anxiety emergency requires
that adequate information be given to patients in a supportive
manner.2 An attitude of ridicule or impatience makes their dis-
tress worse. Cognitive-behaviorally oriented techniques, as well

as crisis intervention principles, are useful. Again, requesting the
presence of supportive family or others familiar to the patient may
help reduce tension and worry.
Psychopharmacological Management
A benzodiazepine is often needed, in combination with psycho-
logical support, for severe anxiety.1 The choice of medication
depends on the severity of anxiety, desired duration of drug action
and rapidity of onset needed, route of administration available,
presence or absence of active metabolites, and metabolic problems
that must be considered (see Chapter52). Fast-acting benzodiaz-
epines such as intravenous lorazepam may be helpful in emergent
situations. If a benzodiazepine cannot be used or tolerated because
of sedation, confusion, or respiratory depression, neuroleptics
may calm the patient relatively quickly. In particular, the sedating
atypical neuroleptics, olanzapine, and quetiapine have prominent
anti-anxiety effects and help patients sleep better at night.
EMERGENCIES RELATED TO DEPRESSION
Causes
Prolonged depressed mood, hopelessness, despondency, guilt,
and suicidal thoughts are often symptoms of a major depression.
Although sadness about illness is normally expected with any
cancer, a major depressive episode is not. Depressive disorders
lead to emergent situations when suicidality or self-harm is a
possibility. Studies have found an increased suicide rate among
patients with cancer. 21 A recent study found increased risk of
suicidal ideation in middle-aged patients more so than older
patients, 22 though the stigma of this symptom often makes it dif-
ficult to study this entity with precision. Suicidal risk must be
assessed before an emergency is imminent. Physical symptoms
should be carefully evaluated to determine whether uncontrolled
pain, fatigue, immobility, insomnia, and/or nausea are so severe
that they are leading to demoralization, depression, and thoughts
of suicide. These symptoms often lead to hopelessness, isola-
tion, desperate feelings, and a sense that life is intolerable unless
the symptoms are relieved. Patients interpret a new or increas-
ingly severe symptom as a sign that the cancer has progressed,
resulting in greater depression and hopelessness. Suicide is a
real risk in these patients, especially if they do not believe that
efforts are being made to control the symptom or that relief is
possible. Suicidal ideation and depressive symptoms often abate
when symptoms are controlled. Amajor depression likely needs
to be treated with an antidepressant. It is important to remind all
staff and family that asking about suicide does not put thoughts
into patients heads or increase the risk of suicide attempts. The
thoughts would often be present beforehand; asking about them
can bring relief in knowing that the patient can now talk with
someone about very upsetting thoughts.
Suicidal Ideation as Emergencies
Many cancer patients have thoughts about dying and have con-
templated that it might be better or easier for themselves or others
if they were not alive. Some try to deal with the uncertainty of an
unhappy, debilitated future by taking control with their thoughts,
such as if it gets bad enough, Iwill kill myself. In reality, many
of these people do not want to die or hurt themselves, but want to
share their frustration and perhaps fears about not being able to
have the kind of health or life that they wanted or expected. It is
Chapter35 psychiatric emergencies 271
not always easy to make a distinction between passive thoughts of
dying with no intent of self-harm and acute, likely self-destructive
behavior (see Chapter37, Depressive Disorders, and Chapter38,
Suicidality). 23 Suicidal behavior can be seen in patients with
depression or severe anxiety or panic symptoms as well as fear
of pain, disfigurement, and loss of function early in the patients
courses.2 Desire for hastened death among terminally ill patients
is often fueled by depression and hopelessness. 24 The serious-
ness of all expressions of suicidality, passive or active, should be
explored with the patient.
It is important to ask if the patient has made a definite plan
to hurt him- or herself. It bears repeating that asking the patient
about suicide does not increase the risk of suicide! When assessing
the risk of suicide, it is important to acknowledge commonality,
to assess the presence of a plan and intent, to assess the patients
access to lethal methods of killing him- or herself, to attain the
patients prior psychiatric history including substance abuse
or prior self-destructive behavior, to find out if the patient has
recently lost a loved one, and if he or she has adequate social sup-
port.2 Box 35.5 outlines questions to ask patients or family in the
assessment of suicidal risk.
Medical predictors of enhanced suicidal risk include poorly
controlled pain, fatigue, advanced stage of disease with debili-
tation, mild delirium with poor impulse control, past psychi-
atric history, and hopelessness or helplessness (loss of control),
especially in the context of depression or anxiety. Examples
of less emergent expressions, which should still be addressed,
include Ive dealt with this illness for so many years; Idont
think Ican go through another procedureId rather die, or
This may be a new diagnosis, but it is cancer. If the disease
spreads and the pain ever gets bad enough, Imay kill myself.
Examples of more emergent expressions of suicidality might
include This pain is unbearable. Theres no way Ican go on
living like this, and Ihave a gun at home, or a few days after
a patient hears that his disease has progressed, a nurse finds
Box 35.5 Questions to Assess Suicidal Risk
Have you ever made a suicide attempt?
Has anyone in your family made a suicide attempt?
What social supports do you have?
Do you have a problem with alcohol or drugs?
Have you recently stopped either abruptly?
Do you have pain or other symptoms that are not being
relieved or addressed?
Do you feel hopeless about ever feeling better?
Asyou look down the road, what would you like to see hap-
pen for yourself?
Have you ever felt it would be easier not to be alive?
Haveyou had thoughts of trying to hurt yourself if things get
bad enough?
Do you have a plan in mind? In the last week?
Do you have pills or other means of ending your life at home?
Do you own or have access to a weapon?
272 Section VII psychiatric disorders
a number of pills under the patients pillow when redoing his
bedding, and the patient was heard muttering that everyone
would be better off without me.
Management of the Suicidal Patient
When you have determined that the patient is at risk for sui-
cidal behavior, it is important to inform family members of the
risk so they can assist in taking away weapons or other means
of self-harm. Though it is unclear how beneficial a behavior
contract is in preventing suicide, 25 it may be helpful in giv-
ing patients the opportunity to think through other options
before they are too distressed to consider them, such as calling
specific friends, family members, or physicians when patients
have thoughts of hurting themselves. Symptoms such as pain,
nausea, insomnia, anxiety, and depression should be treated
as soon as possible. Engaging in symptom control can signif-
icantly impact quality of life and a patients sense of control
and deepening aloneness over his or her situation. For inpa-
tients, room searches should be carried out to make sure there
are no means available for self-destructive behavior. Patients
should be under 1:1 constant observation from the time they
express their active suicidal thoughts, though this too is not a
foolproof deterrent to suicide. Psychiatric hospitalization may
be warranted for acutely suicidal outpatients whose suicidality
is not clearly connected to their medical condition or medi-
cation. A psychiatrist or social worker can assist in making
these arrangements. Mobilizing the patients support system is
important. Aclose family member or friend should be involved
to support the patient, provide information, and assist in treat-
ment planning.
If a major depressive episode has been identified, and the patient
is in a safe, protected environment, antidepressant therapy is initi-
ated, recognizing that effectiveness will not be evident for a number
of weeks. Additionally, there are now warnings about the poten-
tial for antidepressants to cause suicidal ideation. Though rare, all
patients started on antidepressants should be monitored closely, in
particular for agitation and energizing effects of the medication
that arise before the antidepressant effects have fully taken effect.
Psychostimulants are useful in low doses for patients who are
suffering from depressed mood, apathy, decreased energy, poor
concentration, and weakness. They promote a sense of well-being,
decreased fatigue, and increased appetite. They are helpful in
countering the sedating effects of opioids, and they produce a
rapid effect in comparison with the other antidepressants. In
fact, they are often started along with antidepressants and can
be discontinued when the antidepressant effects are likely to have
begun in four to eight weeks. Because of their rapid effect, psy-
chostimulants are particularly useful in patients in the terminal
phases of life.
MANAGEMENT OF EMERGENCIES:
SPECIALCONSIDERATIONS
Capacity to Make Medical Decisions, Refusal of
Treatment, or Demands to Leave the Hospital
Another frequent reason to see a cancer patient emergently is to
assess his or her capacity to make medical decisions, to refuse
medical recommendations, or to leave the hospital against medi-
cal advice (AMA). Emergent consults, interestingly, are usually not
requested when the patient is agreeable to a treatment plan,26 even
if he or she appears somewhat confused. But when patients refuse
medical or surgical procedures (i.e., lumbar punctures, placement
of central catheters) that are deemed to be medically appropriate,
emergent consults are often requested. Discussions about patient
wishes regarding advanced directives, clearly defined healthcare
proxies, proper documentation of those wishes, location of care,
cognitive status, and extent of clinical decline are useful to have in
place before crisis situations.27 Though the oncologist may evaluate
the patients capacity to make medical decisions, it may be advisable
to ask for a psychiatric consultation. It is important to find people
whom the patient knows and trusts (family, friends) to give infor-
mation about baseline cognitive and mental functioning before the
current situation, and to help the patient feel calmer and understand
current issues; this is especially true for patients whose first language
is not English. Misunderstandings are common. It is important to
attain adequate understanding and communication between doc-
tor and patient about the medical situation, which may obviate the
need for a definitive capacity examination. The issue of insight and
judgment should turn on the question at hand regarding a specific
procedure or situation. For instance, Does the patient have the
capacity to make a decision about refusing this MRI scan (or lumbar
puncture)? The patient may be able to understand the issues related
to some decisions and not to others, even if he or she has psychotic
Box 35.6 Guidelines to Assess Decision-Making Capacity and
Refusal of Treatment
The seriousness of the decision to refuse treatment, as well as
the life-threatening nature or potential benefit of a decision,
guides the evaluation of the depth of a patients understand-
ing of the illness, treatment recommendations, and conse-
quences of refusing those recommendations.
The patient may be detained until cognition and judgment
are assessed.
Find out what the patient understands about the current
medical situation.
Do a mental status examination.
Determine if understanding, judgment, or insight about
the specific medical decision is compromised.
The patient may understand issues related to some deci-
sions and not to others.
The patient needs to understand the benefits of the recom-
mendation, the potential risks of the recommendation, and
the consequences of refusing the recommendation.
Obtain corroborating information from family or friends
about baseline mental status.
Obtain corroborating information from family or friends
about end-of-life directives.
If
the patient has limited capacity to make medical decisions,
obtaining and documenting discussions with and attestation
from the health care proxy and family are important.

or depressive symptoms. You want to assess whether the patient
can communicate a choice as well as know whether the patient can
understand information relevant to the clinical situation, and use
reason to assess treatment options and potential consequences of
accepting or refusing the treatment.
In general, the life-threatening nature or potential positive
outcome of a medical decision will guide the needed depth of a
patients understanding of his or her illness, treatment recom-
mendation, and consequences of refusing those recommenda-
tions. For example, a patients refusal of a well-accepted first-line
chemotherapy regimen with few side effects that has a good like-
lihood of curing a newly diagnosed cancer would require more
understanding about the benefits and consequences of accept-
ing or refusing this recommendation than perhaps a terminally
ill patients refusal of a fourth-line chemotherapy regimen that
has little chance of cure and might cause severe side effects that
severely diminish quality of life. Getting assistance from col-
leagues, hospital ethics committees, and family may be helpful.
Guidelines for assessing decision-making capacity and treatment
refusal are listed in Box35.6. In complex situations, a psychiatric
consultation or an ethics committee review may be helpful.
CONCLUSION
In summary, psychiatric emergencies can be among the most
frightening and dangerous situations in the cancer setting. Of
utmost importance is maintaining the safety of patients, staff,
and family. Quick, efficient assessment of the possible etiology of
the emergency and implementation of strategies for diffusing the
distress and allowing either medical workup or treatment to con-
tinue are the primary goals of the oncology and psychiatry staff.
Discussions and planning among multidisciplinary groups about
how to deal with these emergencies before they occur can help
a staff deal with these situations more appropriately, efficiently,
and safely.
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 CHAPTER36
Adjustment Disorders
Madeline Li, Sarah Hales, and Gary Rodin
INTRODUCTION
Every phase of the cancer trajectory, from diagnosis, through
treatment, recovery, and relapse, may be associated with multiple
and often unpredictable stressors. The psychological response to
these acute, chronic, or recurrent cancer-related stressors var-
ies on a spectrum that ranges from normative distress to severe
psychological symptoms that meet diagnostic thresholds for
psychiatric disorders, such as major depression, panic disor-
der, or post-traumatic stress disorder (PTSD). Between these
ends of the continuum lie the adjustment disorders (AD), which
are described as symptoms and behaviors that are excessive, in
relation to the stressor, but that do not meet diagnostic crite-
ria for any other depressive, anxiety, or stress-related disorder.
Conceptually, AD lies between a normal stress response and
psychopathology but has been assigned the status of a diagnostic
category in both the Diagnostic and Statistical Manual of Mental
Disorders (5th edition; DSM-5) and the International Statistical
Classification of Diseases and Related Health Problems (10th
revision; ICD-10).
There has been more than a decade of debate about AD as a
diagnostic category.1 It refers to a transient and often self-limited
response to stress, but nevertheless is one of the most common
diagnoses assigned to individuals who present to emergency
departments with self-harm and with completed suicides.1,2 The
debate over the conceptualization of AD has centered on the lack
of specific diagnostic criteria and its use as a wastebasket diag-
nosis, employed when more specific diagnoses cannot be made,
and as a wild card diagnosis, in order to justify insurance-based
treatment in the absence a major mental disorder. 3,4 The lack of
discrete boundaries between non-pathological distress and AD
has limited its diagnostic certainty and has resulted in its rela-
tive neglect in psychiatric research and low reported prevalence
rates in the general population.5,6 In primary care, patients with
AD are often over-prescribed antidepressants and other psycho-
tropics when watchful waiting and psychological treatments may
be indicated.5
The ambiguity surrounding the AD diagnosis has resulted in
relatively little data available regarding its epidemiology, patho-
genesis, course, prevention, identification, and treatment in
patients with cancer. This chapter will focus on the validity and
utility of the concept and diagnostic criteria for AD and will
review the available evidence base regarding treatment of this dis-
order in cancer patients.
EPIDEMIOLOGY, PREVALENCE,
ANDCLINICAL SIGNIFICANCE
Perhaps the greatest testament to the clinical utility of the diagno-
sis of AD is the frequency with which it is used clinically. Despite
the lack of attention and weight given to AD in the medical and
psychiatric literature, it appears to be the most common psychi-
atric diagnosis made in patients with cancer and other medical
conditions. It is referred to in the DSM-57 as a common accom-
paniment of medical illness and perhaps the major psychologi-
cal response to a medical disorder (p.289). Ameta-analysis of
interview-based studies demonstrated a pooled prevalence for
AD of 19.4% in oncology and hematology settings, compared
to 14.9% for major depression and 10.3% for anxiety disorders.8
A non-significant association between AD and female sex was
observed, which reached significance in studies involving pallia-
tive settings, where the pooled prevalence for AD was 15.4%.
The prevalence rates for AD in individuals with medical condi-
tions are far higher than the reported 0.5% in the general pop-
ulation,6 or 2.94% in primary care, 5 although methodological
limitations may have led to over-diagnosis of depressive disorders
and under-diagnosis of ADs in those studies.9 It is also likely that
trends in psychiatric practice affect the use of these psychiatric
diagnoses. In a 10-year longitudinal observational study of refer-
rals to a consultation-liaison psychiatric service from 1988 to
1997, Diefenbacher and Strain10 found that the diagnosis of AD
with depressed mood decreased by half (30% to 14%), while the
frequency of the diagnosis of depressive disorders more than dou-
bled (6% to 15%). This shift has been attributed to the increased
emphasis on biological psychiatry and on psychiatric disorders
with presumed biological bases.11 As well, the advent of selec-
tive serotonin reuptake inhibitors (SSRIs), regarded as safer in
the medically ill than earlier antidepressants, may have created a
change in the culture of prescription and therefore a change in
the culture of diagnosis of both disorders.12
In the cancer population, ADs have been associated with such
disease-related variables as the stage, prognosis, and burden of dis-
ease, earlier recurrence, lower performance status, pain, and social
factors, including living conditions and social support.13 With
regard to its clinical course, AD may resolve, become chronic, or
develop into a full-blown depressive, anxiety, or trauma disorder.
In the general psychiatry population, Andreasen and Hoenk14 fol-
lowed patients diagnosed with AD for five years and found that
21% developed major depression during this period. In cancer
 Chapter36 adjustment disorders 275

patients, for whom there may be ongoing, compound, and pro-
gressive stressors, AD may be less likely to resolve than when it
occurs in response to a single discrete event. In an advanced can-
cer population, Akechi etal.15 found that 83% of patients diag-
nosed with AD were assigned a different psychiatric diagnosis at
follow-up, with 50% with major depression and 50% having no
diagnosis at follow-up.
Determining when the response to a cancer is disproportion-
ate may be difficult to establish. Nevertheless, the diagnosis of AD
may still have clinical value when used to capture prodromal or
transient states of distress that are amenable to preventive or early
interventions. Such interventions are justified given that psycho-
logical distress may be associated with decreased satisfaction with
and participation in medical treatment, the desire for hastened
death, requests for physician-assisted suicide and/or euthanasia,
reduced quality of life, and distress in family caregivers.13
Pathogenesis
Most models of the pathogenesis of AD are based on that of stress
response symptoms, in which a stressor precipitates symptoms
and maladaptation until the stressor is attenuated or a new state
of adaptation occurs.12 The severity and/or chronicity of a stressor
may overwhelm the resources of the individual and result in
symptoms, particularly when there are pre-existing vulnerabili-
ties. In this respect, the emergence of distress in cancer patients
is conceptualized as arising through a final common pathway, as
a consequence of multiple psychosocial and biological risk and
protective factors. Individual and interpersonal factors likely
moderate the relationship between cancer-related stressors and
the emergence of symptoms along the distress continuum (see
Figure36.1).
It remains unclear whether the symptoms of AD represent an
attenuated form of a depressive, anxiety, or trauma-related dis-
order, or represent a clinical syndrome with unique determining
factors and sequelae. Common biological associations for AD and
major depression have been identified. Romanowicz etal.16 identi-
fied an association of the rs6265 brain-derived neurotrophic fac-
tor (BDNF) polymorphism with both major depression and AD,
diagnosed by clinical interview, in acute leukemia patients prior
to stem cell transplant. Similarly, a longitudinal positron emission
tomography (PET) study in cancer patients has shown that meta-
bolic effects in specific brain regions (e.g., decreased metabolism
in the right medial frontal gyrus, and increased metabolism in the
right posterior cingulate, right anterior cingulate, left subcallosal
gyrus, and left caudate) are associated with vulnerability to major
depression and to AD.17 However, it is possible that these are non-
specific vulnerabilities that are linked to affective arousal and do
not distinguish among diagnostic categories.
DIAGNOSTIC CRITERIA
The AD diagnosis first appeared in the second edition of the DSM
(DSM-II) in 1968,18 to replace the category of transient situational
disturbance, and it was subsequently included in the ninth edi-
tion of the ICD (ICD-9) in 1978. AD was included in these diag-
nostic systems, in part, to compensate for the elimination of the
category of reactive depression.11 In contrast to the primarily
non-etiological approach of the DSM, ADs are defined by the
response to an identified stressor. Because of its commonality
with other disorders so defined, DSM-5 re-categorized AD as a
stress-response syndrome and included it in the newly created
category of trauma and stress-related disorders, along with acute
stress disorder (ASD) and post-traumatic stress disorder (PTSD).
This categorization also reflects the more dimensional approach
to diagnosis in the DSM-5, in which AD may be considered as a
subsyndromal presentation of ASD or PTSD.19,20
The DSM-5 diagnostic criteria for AD are listed in Box 36.1.
Aside from the new inclusion of ASD in the category of a

Biological Stressors of Cancer Psychosocial Stressors of

Cancer
Tumor burden Diagnosis, relapse, palliative stage
Treatment morbidity Disability
Neurobiologic changes Change in identify and role
Pain and physical symptoms functioning
Change in appearance
Change in life trajectory
Uncertainty

Individual and Interpersonal Factors

Sociodemographics
Life stage
Prior experience/history
Personality
Coping strategies
Attachment style
Social supports
Spirituality

Continuum of Distress
Mild distress Adjustment Subthreshold Depressive/Anxiety/Trauma
(normative response) Disorders Disorders Disorders

Figure36.1 Model of pathways to distress.

276 Section VII psychiatric disorders
Box 36.1 DSM-5 Diagnostic Criteria for Adjustment Disorders
A. The development of emotional or behavioral symptoms
in response to an identifiable stressor(s) occurring within
three months of the onset of the stressor(s).
B. These symptoms or behaviors are clinically significant, as
evidenced by either of the following:
1. Marked distress that is out of proportion to the severity
or intensity of the stressor, taking into account the exter-
nal context and the cultural factors that might influence
symptom severity and presentation.
2. Significant impairment in social, occupational, or other
important areas of functioning.
C. The stress-related disturbance does not meet the criteria for
another mental disorder and is not merely an exacerbation
of a pre-existing mental disorder.
D. The symptoms do not represent normal bereavement.
E. Once the stressor or its consequences have terminated,
the symptoms do not persist for more than an additional
sixmonths.
Specify whether:
With depressed mood: Low mood, tearfulness, or feelings of
hopelessness are predominant.
With anxiety: Nervousness, worry, jitteriness, or separation
anxiety is predominant.
With mixed anxiety and depressed mood: Acombination of
depression and anxiety is predominant.
With disturbance of conduct: Disturbance of conduct is
predominant.
With mixed disturbance of emotions and conduct: Both emo-
tional symptoms (e.g., depression, anxiety) and a disturbance
of conduct are predominant.
Unspecified: For maladaptive reactions that are not classifiable
as one of the specific subtypes of adjustment disorder.
Reprinted with permission from American Psychiatric Association,
Diagnostic and Statistical Manual of Mental Disorders, 5th ed.
Arlington, VA:American Psychiatric Association; 2013.
stressor-related disorder, the current diagnostic criteria have not
significantly changed from the fourth edition (text revision) of
the DSM (DSM-IV-TR). The diagnosis of AD still requires the
onset of a psychological response within three months of an
identifiable stressor, characterized by either marked distress out
of proportion to the stressor, and/or significant impairment in
social or occupational functioning. The latter criterion allows for
diagnosis when reaction to a stressor is normal or expectable, if it
is severe enough to cause significant impairment in social, occu-
pational, or other important areas of functioning. The DSM-5
now qualifies the out of proportion criterion by advising that
the external context and cultural factors that might influence
symptom severity and presentation be taken into account. The
subtypes of AD remain unchanged, including with depressed
mood, anxiety, mixed anxiety, and depressed mood, distur-
bance of conduct, mixed disturbance of emotions and conduct,
or unspecified.
AD retains the exclusion criteria of another mental disorder
better accounting for the symptoms, although another mental
disorder with unrelated symptoms (e.g. obsessive-compulsive dis-
order or bipolar disorder) can be comorbid. Removal of bereave-
ment as an exclusion criterion had been proposed based on the
lack of evidence differentiating the depressive subtype of AD from
bereavement.19 However, in contrast to the revision of the diag-
nostic criteria for major depression in DSM-5, normal bereave-
ment has been retained as an exclusion criterion for AD. Finally,
the symptoms must not persist more than six months after the ter-
mination of the stressor. Although the previous acute or chronic
specifiers have been removed, adjustment-like disorders with
delayed onset of symptoms that occur more than three months
after the stressor and adjustment-like disorders with prolonged
duration of more than six months without prolonged duration
of stressor can be recorded under other specified trauma- and
stressor-related disorder.
There are a number of differences in the categorization of AD
in the DSM-5 and the ICD-10, a diagnostic system developed by
the World Health Organization21 and commonly used in Europe
and other parts of the world (publication of the revised ICD-11
criteria is anticipated in 2017). AD in the ICD-10 is classified as a
separate category under neurotic, stress-related, and somatoform
disorders. It must have an onset within one month of the stressful
event and is subtyped into brief depressive reaction and prolonged
depressive reaction. The ICD-10 specifies that adjustment disor-
der in children may be characterized by regressive behaviors, and
there is no chronic specifier, although the prolonged depressive
reaction subtype may extend up to two years (Box 36.2).
DIFFERENTIAL DIAGNOSIS
The main alternate disorders to consider when diagnosing AD
are the subthreshold presentations of depressive, anxiety, and
trauma-related disorders, captured in the DSM-5 under other
specified disorder or unspecified disorder, although the dis-
tinction between AD and subthreshold presentations of these
categories is, to some extent, arbitrary. Other diagnostic consid-
erations in cancer patients are the depressive or anxiety disor-
der due to another medical condition diagnoses, both of which
have relatively nonspecific entry criteria. For these diagnoses, the
disturbance must be a direct pathophysiological consequence of
another medical condition, although such causal associations
have not definitively been substantiated in cancer. The clear diag-
nostic entry criteria for full syndrome major or persistent depres-
sive disorders, specific phobias, panic or generalized anxiety
disorders, and ASD/PTSD distinguish them from AD.
Individuals with personality disorders may present with intense
emotional and behavioral disturbance in response to stressors,
particularly because they tend to have difficulties with affect regu-
lation. Although such disorders are a risk factor for AD, they are
exclusion criteria if the disturbance in affect represents an exac-
erbation of a pre-existing mental disorder. This may be the case
with borderline or other personality disorders in which affect dys-
regulation is a primary feature of the disorder. Acareful history of
lifetime personality functioning and an evaluation of whether the
 Chapter36 adjustment disorders 277

Box 36.2 ICD-10 Diagnostic Criteria for Adjustment Disorders

A. Onset of symptoms must occur within one month of exposure to an identifiable psychosocial stressor, not of an unusual or cata-
strophic type.
B. The individual manifests symptoms or behavior disturbance of the types found in any of the affective disorders (except for delu-
sions and hallucinations), any disorder in neurotic, stress-related, and somatoform disorders, and conduct disorders, but the
criteria for an individual disorder are not fulfilled. Symptoms may be variable in both form and severity.
The predominant feature of the symptoms may be further specified.
Brief depressive reaction
A transient mild depressive state of a duration not exceeding one month.
Prolonged depressive reaction
A mild depressive state occurring in response to a prolonged exposure to a stressful situation but of a duration not exceeding two
years.
Mixed anxiety and depressive reaction
Both anxiety and depressive symptoms are prominent, but at levels no greater than those specified for mixed anxiety and depressive
disorder or other mixed anxiety disorders.
With predominant disturbance of other emotions
The symptoms are usually of several types of emotions, such as anxiety, depression, worry, tensions, and anger. Symptoms of anxiety
and depression may meet the criteria for mixed anxiety and depressive disorder or for other mixed anxiety disorders, but they are
not so predominant that other more specific depressive or anxiety disorders can be diagnosed. This category should also be used for
reactions in children in whom regressive behavior such as bed-wetting or thumb-sucking is also present.
With predominant disturbance of conduct
The main disturbance is one involving conduct, e.g., an adolescent grief reaction resulting in aggressive or dissocial behavior.
With mixed disturbance of emotions and conduct
Both emotional symptoms and disturbances of conduct are prominent features.
With other specified predominant symptoms
Except in prolonged depressive reaction, the symptoms do not persist for more than six months after the cessation of the stress or its
consequences. However, this should not prevent a provisional diagnosis being made if this criterion is not yet fulfilled.
C. Except in prolonged depressive reaction, the symptoms do not persist for more than six months after the cessation of the stress or
its consequences. However, this should not prevent a provisional diagnosis being made if this criterion is not yet fulfilled.

Source:Reprinted with permission from World Health Organization (WHO), International Statistical Classification of Diseases and Related Health
Problems, 10th revision. 2010. http://apps.who.int/classifications/icd10/browse/2010/en. Accessed April 4, 2014.

disturbance exceeds that which is attributable to the pre-existing ASSESSMENT

maladaptive personality disorder are required to make the diag-
nosis of AD in this context.
The remaining DSM-5 category that may resemble AD in can-
cer patients is the new somatic symptom and related disorders,
which includes psychological factors affecting other medical con-
ditions, illness anxiety disorder, and somatic symptom disorder.
Psychological factors affecting other medical conditions is the
inverse of AD, referring to psychological symptoms that exacer-
bate a medical condition, rather than the stressor of the medical
condition itself precipitating psychological symptoms. In somatic
symptom disorder, the focus of distress is on specific physical
symptoms, which may change over time. In illness anxiety dis-
order, the presentation is hypochondriasis or preoccupation with
acquiring a serious illness. In the context of cancer, this may man-
ifest as a clearly excessive or disproportionate preoccupation with
recurrence, although there are no established criteria regarding
what is normative in this situation.
Screening and Assessment Tools
The clinical interview remains the gold standard for the identifi-
cation of AD, since validated self-report measures are not avail-
able.22 Existing self-report measures fail to adequately distinguish
AD from depressive disorders,9,15 and it is unclear what the rela-
tionship is between the recent Screening for Distress initiatives
(see Chapter48) and identifying AD. The Coping Flexibility Scale
for Cancer (C-Flex), a specific self-report measure developed to
screen for AD in cancer, proved to lack adequate sensitivity and
specificity, possibly due to the vague nature of the diagnostic cri-
teria.23 Einsle etal.24 developed and validated a questionnaire for
AD, but it was based on stress-response syndrome symptoms,
such as intrusive thoughts and avoidant behaviors, and therefore
is not compatible with the DSM-5 criteria.
Structured diagnostic interviews similarly demonstrate poor
reliability compared to clinical diagnoses, and most, such as the
278 Section VII psychiatric disorders
Composite International Diagnostic Interview (CIDI), do not
include AD, except as a diagnosis of exclusion (e.g., SCID-I for
DSM-IV). The CIDI-O is a German adaptation of the CIDI for
oncology patients that includes AD, although validation studies
have yet to be published.25,26 Recently, Cornelius et al.27 devel-
oped the Diagnostic Interview Adjustment Disorder (DIAD),
and validated it on a sample of disability claimants. This inter-
view adjusted and operationalized the DSM-IV diagnostic cri-
teria, removing the exclusion of other mental disorders and the
six-month termination criterion, and operationalizing distress.
Acutoff of > 10 on the distress subscale of the Four-Dimensional
Symptom Questionnaire (4DSQ) and > 4 in at least two domains
of the Sheehan Disability Scale (SDS) was used, although the rel-
evance of these cut-scores in the context of cancer is unclear.28
Challenges to Assessment and Diagnosis
of Adjustment Disorders in Cancer
It is clear that a major shortcoming of the AD category is the
lack of operational criteria for its diagnosis. Indeed, all of
the core diagnostic criteria of AD lack specificity, particularly in
the context of cancer. With respect to Criterion A, it may be dif-
ficult to identify a discrete stressor with a temporal relationship
to the onset of symptoms. Distress in patients with cancer most
often fluctuates across the course of illness, and the multitude of
stressors frequently obfuscates temporal relationships. As a result
of the cumulative impact of multiple and repetitive stressors, a rel-
atively minor subsequent stressor may precipitate symptoms that
cross the threshold from normal adaptation to disorder. In some
cases, distress emerges after the three-month time restriction in
the DSM-5 criteria. This may occur in the months following com-
pletion of all active cancer treatment, often due to a process of
reflection that had been derailed or delayed due a prolonged state
of crisis and narrowed attention.
With respect to Criterion B (that the symptoms or behavior
are clinically significant), the DSM-5 now takes into account the
external context. The normative response to the stressors of can-
cer, however, is not well established, and there are no standards
by which to determine what constitutes distress that is out of pro-
portion in the context of the multiple, chronic, or recurrent bio-
logical, psychological, and social stressors of cancer. In addition,
it can be difficult to determine whether significant impairment in
social or occupational functioning is related to the psychological
disturbance associated with cancer or to medical morbidity such
as pain, nausea, and fatigue.
With regard to Criterion C (that the stress-related disturbance
does not meet criteria for another mental disorder), it is important
to recognize that although AD is considered a non-pathological
disorder, it may still be associated with significant distress. By def-
inition, there must be marked distress, but with symptoms that do
not meet diagnostic criteria for another mental disorder.
Criterion D specifically excludes distress related to bereavement
in the diagnosis of AD, presumably because this is normative. The
diagnosis of cancer often triggers grief reactions in response to
the multiple and profound losses that may be associated with the
disease. Cancer-related losses include those related to body image
and identity, sexuality, employment and financial status, social
and family relationships, and anticipated future accomplishments
and events. However, grief reactions related to cancer are not con-
sidered an exclusion criterion for AD.
Finally, Criterion E states that once the stressor or conse-
quences have terminated, the symptoms have not continued for
more than six months, in order for a diagnosis of AD to be made.
However, this does not take into account the longitudinal course
of conditions like cancer, which may be associated with persistent,
repeated, sequential, or multiple stressors. In such circumstances,
it may be difficult to ascertain the onset of discrete stressors, the
response to which may overlap.
MANAGEMENT
General Issues
The model of distress as a final common pathway resulting from
multiple psychological, social, and biological factors draws atten-
tion to the diverse interventions that may be employed for pre-
vention and early intervention. These include psycho-education,
spiritual well-being, family functioning, and the relief of pain and
other physical symptoms. The paucity of psychiatric research on
the prevalence and course of ADs extends to that on treatment
outcome. Such research has been limited by the lack of adequate
severity rating scales to measure treatment response. The goals
and endpoint of treatment for AD in cancer patients may be
unclear given the chronic, compounded, or worsening nature
of many cancer-related stressors. Nevertheless, this diagnosis is
compatible with common practice in cancer settings in which
brief interventions are used to relieve distress. In spite of the enor-
mous challenges that cancer patients face, brief interventions may
be effective because of the relative absence of psychiatric comor-
bidity and the frequent presence of supportive social and family
environments.
Psychotherapeutic Approaches
Psychotherapeutic interventions are generally the first line of
treatment for AD. The selection of a specific psychological inter-
vention for AD in cancer patients is based on the individual
contributors to distress and the unique needs of the patient. The
primary goals of most such interventions are to provide emotional
support, reduce the severity of the stressor, enhance coping skills,
and strengthen the available support system.
In cancer patients, various interventions, including education,
relaxation, and several forms of individual and family therapies,
have been shown to result in distress reduction, improved coping,
and better functioning. Several of these specific interventions are
discussed in detail later in this chapter. Many must be delivered
by trained psychotherapists, but some can be delivered by nurses,
social workers, occupational therapists, and peer counselors. No
studies on the outcome of psychotherapeutic treatments specifi-
cally for AD in cancer patients have been reported.
Pharmacologic Approaches
It has been suggested that medications may be indicated for
patients with AD who do not benefit from supportive measures
or psychotherapy.12 In cancer patients, the temporary use of hyp-
notics and benzodiazepines for insomnia or anxiety, and antide-
pressants for depressive symptoms, may be helpful, particularly
since these drugs have a dual benefit, potentially alleviating
cancer-related physical symptoms such as fatigue (i.e., bupro-
pion), nausea and loss of appetite (i.e., mirtazapine, olanzapine),
pain (i.e., duloxetine), and hot-flashes (i.e., venlafaxine). Details

regarding the use of pharmacotherapy for anxiety and depressive
symptoms are discussed in Chapters37, 39, and 52. Research evi-
dence guiding pharmacotherapy for ADs specifically is limited.
There has been only one randomized controlled trial (RCT) of
pharmacotherapy for ADs in cancer, which showed that trazo-
done was more effective than clorazepate in the treatment of anx-
ious and depressed symptoms.29 Asmall open-label, case series in
gynecologic cancer patients demonstrated a reduction in anxiety
with fluvoxamine treatment in five patients diagnosed with AD.30
CASE EXAMPLES
Case 1:Adjustment Disorder with Depressed Mood
Mr. L. was a 37-year-old divorced male of Italian descent, with
no children, living with his parents and working in construction,
when he was diagnosed with a locally advanced laryngeal cancer.
He was referred for psychiatric assessment by his oncology team,
who said that he had run away before he was scheduled to begin
his first cycle of induction chemotherapy. His family reported
that he had gone missing the day before his first chemotherapy
appointment and returned home without explanation four days
later, telling them that he had decided not to have chemotherapy.
When interviewed, Mr. L.was downcast but did not demon-
strate psychomotor retardation. He expressed a belief that treat-
ment with chemotherapy was futilethat it would only prolong
the burden on his family and prevent him from enjoying the lim-
ited time remaining in his life. The expected period of disability
from work and the enforced dependence on his family was highly
distressing to him. He endorsed significant dysphoria, with fre-
quent episodes of tearfulness, which he found intolerable, feel-
ings of guilt about the burden on his family, and hopelessness
about his future and about a favorable response to treatment. He
denied anhedonia, neurovegetative symptoms, or suicidal ide-
ation and revealed that he spent the four days in which he was
missing enjoying a fishing trip, which had distracted him from
his dilemma.
Mr. L. agreed to accept individual psychological support,
undertaken initially to determine his capacity to refuse medical
treatment. The psychological treatment focused both on his nega-
tive cognitions about the futility of treatment and on his attach-
ment anxiety in the context of an increased need to depend on
others. Over the following three weeks, he was able to reframe
his negative beliefs about the futility of treatment and to consider
other potential outcomes. He developed insight into his diffi-
culty accepting help and became more able to tolerate receiving
support from his family. He eventually agreed to chemotherapy
and adopted a fighting spirit toward his cancer. He completed
a course of combined chemoradiation treatment, requiring only
intermittent subsequent sessions for psychological support.
Case 2:Adjustment Disorder with Mixed Anxiety
andDepressed Mood
Mrs. F.was a 47-year-old married woman with three children who
had been diagnosed three years earlier with a rare T-cell leuke-
mia. Her treatment was marked by numerous medical complica-
tions and a relapse within two months of completing her initial
chemotherapy. She understood that her disease was incurable at
Chapter36 adjustment disorders 279
the time of diagnosis, but had managed to avoid dwelling on such
thoughts. She maintained a positive, hopeful attitude, accepting
disease complications as they arose and focusing on enjoying
her life. However, this adaptive approach was undermined by the
complications of a stem-cell transplant that included viral nephri-
tis and severe pedal edema that impaired her ability to walk.
Mrs. F. was referred for psychiatric assessment following a
five-day history of uncontrollable crying and anxiety, which were
highly unusual for her. She reported intense and persistent feel-
ings of terror, with intrusive thoughts about her current medical
complications, which she now believed marked the beginning
of the end. She was afraid to spend any time alone but was dis-
tressed that her husband took a leave of absence from his work to
be at her side. She endorsed significant anhedonia and impaired
concentration, and reported that she had completely stopped her
usual comfort strategies of meditation, reading, and singing. She
felt hopeless about regaining the ability to walk or to garden, and
indicated that she did not wish to live if her current emotional
state could not be alleviated.
Mrs. F.s anxiety responded to a low dose of clonazepam, which
enabled her to engage in supportive-expressive therapy, reflecting
on the feelings of grief and the existential concerns that had been
activated by the progression of her disease. With support, she was
more able to tolerate disturbing feelings, and she began to engage
in end-of-life preparations, including developing legacy projects
for her children. Over the next few weeks, the clonazepam was
gradually reduced in dosage and then was discontinued without
recurrence of her anxiety. As her medical condition improved, she
began to re-engage in and to enjoy meditation and reading.
FUTURE RESEARCH
The nonspecific diagnostic criteria for AD were retained in DSM-5,
partly because there had been insufficient empirical research over
the last decade to support any proposed changes.19 Elucidation
of the unique psychological, biological, and treatment response
distinctions in AD may facilitate re-conceptualization of this
disorder, which may ultimately lead to the development of much
needed standardized assessment instruments for AD.
There have been several proposals for making AD a full syndro-
mal disorder, with new diagnostic criteria based on stress-response
syndromes.25 Such a change would be supported by research
characterizing the psychobiological correlates of AD. Whether
there are hormonal or genetic differences between individuals
with different AD subtypes or between specific subtypes and the
full-threshold disorders (e.g., AD depressive subtype vs. major
depression)25 could be explored. Similarly, research could be con-
ducted comparing both pharmacologic and psychologic treatment
responses of specific AD subtypes and the full-threshold disorder.
More longitudinal research also is needed to build upon the path-
ways to distress model, and to account for resilience from distress
and healthy adjustment in the cancer population.
CONCLUSIONS
AD is a psychiatric categorization of distress that captures symp-
toms that impair well-being and quality of life, but that do not
fulfill the criteria for another psychiatric condition. Despite the
problematic aspects of the AD diagnostic criteria, its ill-defined
280 Section VII psychiatric disorders
boundaries may have heuristic value for clinicians who wish to
label distress in a way that is non-stigmatizing. Further research
may be needed to refine the criteria for the diagnosis of AD and to
evaluate treatment outcomes. In the meantime, this category may
help to facilitate treatment for many cancer patients who are suf-
fering unnecessarily from psychological distress.
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 CHAPTER37
Depressive Disorders
Peter Fitzgerald, Kimberley Miller,
Madeline Li, and Gary Rodin
INTRODUCTION
Distress is common in cancer patients who are burdened by
multiple physical and psychological problems. Depression is
one of the most common forms of distress in such individuals,
occurring at any point along the disease trajectory, although it
is more common in those with greater physical suffering and
more advanced disease. The physical burden of disease and bio-
logical, psychological, and social factors may all play a role in
the onset of depressive symptoms. These symptoms occur on a
continuum, with non-pathologic sadness at the milder end, sub-
threshold depression and adjustment disorder with depressed
mood in the middle, and major depression at the more severe
end of the spectrum. Clinically significant depression deserves
treatment, not only because of the psychological burden it
imposes, but also because of its association with poorer quality
of life, more prolonged hospital stays, increased physical dis-
tress, poorer treatment compliance, a desire for hastened death,
and suicide.
PREVALENCE OF DEPRESSION IN CANCER
The reported prevalence of depressive symptoms in cancer
patients has varied, depending on factors such as the cancer
type and stage, the disease burden, the timing and method of
assessment of depressive symptoms, and the demographic char-
acteristics of the population studied. Higher rates of depressive
symptoms have been found toward the end of life and in specific
cancers, such as pancreatic, oropharyngeal, and lung cancers.1,2
Major depression occurs overall in approximately 16% of patients
with cancer, with subthreshold depressive disorders (i.e., minor
depression) and dysthymia (referred to in the DSM-5 as persis-
tent depressive disorder) combined reported in almost 22% of
patients.3 Such prevalence rates for depression are at least three
times those found in the general population.4 While subthresh-
old depression does not usually progress to major depression, it is
still associated with significant impairment in quality of life and
well-being that can be alleviated.5 Indeed, subthreshold depres-
sion may be the most prevalent and treatable form of depression
in the cancer population.
ASSESSMENT OF DEPRESSION
Screening
A common barrier to the identification of depressed patients in
oncology and other medical settings is the failure of healthcare
providers to adequately inquire about symptoms.6 In fact, phy-
sicians identify only one-third of patients who score highly on
measures of distress, which is why routine psychosocial distress
screening has been recommended as a standard of patient care in
cancer (see Chapter48). While screening tools can improve the
detection of depression in the clinic setting, the evidence that this
results in improved depression outcomes in cancer patients is still
mixed. An impact on such outcomes is unlikely to occur unless
positive screening triggers diagnostic assessment and coordinated
care pathways for depression and for pain or other somatic symp-
toms that frequently contribute to depression in this population.
Many validated depression-rating scales have been used to
screen for depression in cancer patients (see Chapter47). These
scales can also serve to monitor treatment response and to cap-
ture the dimensions of depressive symptoms, although a clinical
interview is necessary to substantiate the presence of a depres-
sive disorder. The presence of somatic symptoms due to cancer or
its treatment may spuriously elevate scores on depression rating
scales (see below). For this reason, higher cutoff scores may be nec-
essary to maximize screening accuracy.7,8
Diagnosing Depression in Cancer
In the cancer setting, identification of the factors contributing to
depression requires consideration of the meaning of the illness for
the patient, the burden of psychological and physical symptoms,
the social context, and the potential neuropsychiatric effects of the
cancer and its treatment. Such an assessment allows treatment to
be focused not only on the depressive symptoms but also on those
factors that have contributed to its onset and persistence. This is
important in order to identify contributing factors that can be
addressed, and to implement appropriate psychosocial and phar-
macological interventions as required.
A major depressive episode (MDE), according to Diagnostic
and Statistical Manual of Mental Disorders (5th edition; DSM-5)
282 Section VII psychiatric disorders
diagnostic criteria,9 refers to a syndrome characterized by at
least five symptoms that are present for at least two weeks, one
of which is either pervasive depressed mood or anhedonia. The
other symptoms include appetite or sleep disturbance, psycho-
motor agitation or retardation, decreased energy, feelings of
worthlessness or guilt, difficulty concentrating, and suicidal ide-
ation. Distinguishing the somatic symptoms of depression from
cancer-related somatic symptoms can present a diagnostic chal-
lenge, since symptoms such as anorexia, sleep disturbance, and
fatigue may arise from the effects of cancer and its treatment and/
or to comorbid depression.
Various strategies have been proposed to diminish the con-
founding effect of somatic symptoms on the diagnosis of major
depression in medical illness. The DSM-endorsed strategy is a
combined exclusive and etiological approach, which speci- Reprinted with permission from Fitzgerald P, Li M, Grassi L, Rodin G. Pharmacotherapy of
fies exclusion of potential MDE criterion somatic symptoms
that are thought by the clinician to be fully attributable to a
general medical condition or its treatment. However, such an
approach is highly dependent on clinical judgment regarding
symptom etiology, which is often uncertain in this circum-
stance. As a result, other approaches have been proposed that
include inclusive, exclusive, and substitutive schemes. However,
each strategy has its limitations, and no system has demon-
strated improved overall accuracy in diagnosing depression in
the medically ill.10
The inclusive approach counts any of the nine MDE cri-
terion symptoms in the diagnosis of depression, regardless of
whether the clinician judges that the symptom is due to medi-
cal or psychological causes. Though this approach is highly
sensitive and reliable, it has been criticized because its low
specificity results in falsely elevated rates of depression. The
exclusive approach excludes anorexia and fatigue from the
list of MDE criterion symptoms, reducing their number from
seven to five. While this method may improve specificity, it
does so at the cost of reduced sensitivity. Endicott proposed a
substitutive approach that eliminates from the MDE crite-
rion list those somatic items that may be attributable to medi-
cal illness (such as loss of energy, weight loss, psychomotor
changes, and impaired concentration) and replaces them with
symptoms more likely to be cognitive-affective in nature (such
as irritability, tearfulness, feeling punished, or social with-
drawal).11 While this approach eliminates the need to distin-
guish symptoms of medical illness from those of depression,
it may underestimate depression prevalence, and the criteria
to determine which symptoms should be substituted have not
been clearly established.
Koenig et al.10 found no overall advantage of one diagnos-
tic scheme over another in their evaluation of the prevalence of
depression in 460 older medically ill hospitalized patients. The
DSM approach of an exclusive-etiological strategy identified the
most severe persistent depressions, but an inclusive approach was
the most sensitive and reliable. In practice, clinicians must rely
on their clinical judgment regarding whether somatic symptoms
are manifestations of depression, and must weigh more heavily
the psychological symptoms of depression. The extent to which
depressive symptoms are pervasive and non-reactive to envi-
ronmental factors may help to distinguish depressive disorders
from normative sadness associated with a serious medical illness
(Table37.1).
Table37.1 Discriminating Major Depression from Normative Sadness
Psychological Features
Major Depression Normative Sadness
Feels isolated Maintains intimacy and connection
Feeling of permanence Belief things will get better
Excessive guilt and regret Can enjoy happy memories
Self-critical ruminations/loathing Sense of self-worth
Constant and pervasive Fluctuates with thoughts of cancer
Sense of hopelessness Looks forward to the future
Loss of interest in activities Retains capacity for pleasure
Suicidal thoughts/behavior Maintains will to live
depression in cancer patients. In:Grassi L, Riba M, eds. Psychopharmacology in Oncology
and Palliative Care:APractical Manual. Heidelberg:Springer; 2014.
Differential Diagnosis of Depression in Cancer
Subthreshold depression is a term used in the literature to refer
to depressive symptoms that are clinically significant (i.e., cause
significant distress or impairment) but that do not meet criteria
for the diagnosis of a major depression in terms of the symptom
number and/or duration criteria. The term minor depression
was used in the DSM-IV-TR research criteria to refer to depression
in which only two to four depressive symptoms were present for
at least two weeks. In the DSM-5, this is now termed depressive
episode with insufficient symptoms and is categorized within the
Other Specified Depressive Disorders diagnoses. When depres-
sive symptoms are chronic in duration, then a diagnosis of per-
sistent depressive disorder should be considered, which includes
dysthymia (when 3 to 4 depressive symptoms are present continu-
ously for at least 2years) and chronic major depression (i.e., when
a major depressive episode persists for at least 2years).
Depressive symptoms in cancer patients may also be a compo-
nent of an adjustment disorder (with depressed mood as a speci-
fier, when low mood, tearfulness, or feelings of hopelessness are
predominant). This diagnosis refers to a state of marked distress
and functional impairment that are disproportionate to the
stressor and that are not better accounted for by another mental
disorder (see Chapter36).
Substance/Medication-Induced Depressive Disorder
Substance/medication-induced depressive disorder is suspected
when there is evidence that the depressive symptoms developed
after exposure to a substance/medication that can produce such
symptoms. In oncology, this most commonly involves cancer
treatments with corticosteroids, or exogenous cytokines, such
as interferon-alpha or interleukin-2.12 Discontinuation or dos-
age reduction of the causative agent may not always be possible,
requiring concomitantly administration of an antidepressant. If
direct physiologic effects of the cancer appear to play a principal
role in the development of a depressive episode, then a diagno-
sis of depressive disorder due to another medical condition (i.e.,
cancer) can be made. This may occur with either primary or
secondary brain tumors, although depression needs to be dis-
tinguished from organic emotional lability. In order to make a
diagnosis of substance-induced depression or depression due to

another medical condition, clinical judgment is required to deter-
mine whether the mood disturbance could be better explained or
understood by another mental disorder, such as a major depres-
sive episode or adjustment disorder. Careful exploration of the
psychological and social factors may also be of value in making
this distinction.
Hypoactive delirium is a common mimic of depression in the
medically ill, as individuals with such disorders may appear apa-
thetic and may voice suicidal ideation. However, disturbances in
consciousness, attention, cognition, and perception suggest the
presence of delirium, which should always be ruled out when eval-
uating depression in cancer patients. Even when comorbid depres-
sion is present, treating the delirium and its specific underlying
causes must take priority, with re-evaluation of mood symptoms
after its resolutions (see Chapter40).
A complex, bidirectional relationship may exist between
mood and physical symptoms, such as pain and fatigue, in can-
cer patients. Patients in an acute pain crisis may express sadness,
despair, and suicidal ideation related to the unbearable nature
of the pain symptoms. Equally, a depressed mood may heighten
somatic symptom perception and physical symptom distress.
This bidirectional relationship between depression and physical
symptoms has also been viewed as part of a group of adaptive
psychobiological responses to illness termed sickness behaviors.
These behaviors may represent a form of subthreshold depression
with predominant somatic symptoms, but may progress to major
depression.13
Finally, the clinician should be alert to the possibility of a mood
disturbance reflecting an underlying bipolar disorder, rather than
a unipolar depression. This diagnosis is based on an assessment of
manic or mixed features in the presentation and inquiry regard-
ing a past personal and family history of mania or hypomania.
Risk Factors and Pathophysiology of Depression
The emergence of depression in patients with cancer may be under-
stood as a final common pathway resulting from the interaction
of multiple disease-related, individual, and psychosocial factors.
Individual and psychosocial risk factors include younger age, per-
sonal or family history of depression, less social support, greater
attachment anxiety, poorer communication with medical care-
givers, and maladaptive coping strategies. The physical burden of
cancer, reflected in the number and severity of physical symptoms
and resultant functional disability, is one of the strongest and
most consistent predictors of depressive symptoms. Individuals
with both greater physical burden and greater psychosocial vul-
nerability are at most risk for becoming depressed.2 Those with a
past history of depression are at greatest risk, and those with a per-
sonal or family history of major psychiatric illness or with a past
history of psychotic depression are more likely to develop depres-
sion with psychotic features in the context of cancer.
From a pathophysiological perspective, there is mount-
ing evidence that both psychological stressors and tumor cell
burden or treatment-induced tissue destruction may release
pro-inflammatory cytokines leading to sickness behaviors such
as anhedonia, fatigue, anorexia, weight loss, insomnia, cognitive
impairment, psychomotor retardation, and hyperalgesia. In some
individuals, this may further lead to alteration of the metabolism
of monoamines, tryptophan, or thyroid hormones, as well as
activating corticotropin-releasing factor, thereby stimulating the
Chapter37 depressive disorders 283
hypothalamic-pituitary-adrenal (HPA) axis, and contributing to
the development of major depression.13,14
Management of Depression
Understanding depressed cancer patients from a biopsychoso-
cial perspective allows individual and personally relevant inter-
ventions to be implemented that address both the depressive
symptoms and the disease-related and psychosocial factors that
contribute to its emergence. Athoughtful exploration of patients
understanding of their illness and prognosis, experience of cancer
and physical symptoms, concurrent stressors, and personal rela-
tionships helps to develop an individualized and comprehensive
care plan.
While antidepressant medications are most effective for patients
with more severe depression,15 psychological treatments are of
value across the spectrum from milder to more severe depressive
conditions.16 Psychotherapeutic interventions that may alleviate
or prevent significant depressive symptoms include therapeu-
tic support provided by front-line medical caregivers, as well as
interventions delivered by mental health specialists. Although not
specific for depression, it has been shown that cancer patients who
perceive their relationships with healthcare providers as support-
ive and who report good communication with their medical team
experience less distress in their illness experience.17
There is a growing evidence base for the benefits of an integrated
approach to providing psychosocial care within ambulatory
oncology settings.18 Such a collaborative care model comprises
systematic case finding of patients in need, and an integrated
delivery of care provided by dedicated care managers, such as spe-
cialist nurses or social workers. Care managers may provide brief,
evidence-based psychosocial treatments, such as problem-solving
therapy and/or psycho-education, with appropriate psychosocial
specialist supervision. Pharmacotherapy and further stepped
interventions are provided when indicated. Such an approach fos-
ters coordination of care between the front-line medical team and
specialist mental health cancer services, thereby improving access
to psychosocial care for cancer patients.
PHARMACOLOGICAL TREATMENTS
OFDEPRESSION
Antidepressant Medication
Efficacy in Cancer Patients
Although a large body of research demonstrates the efficacy of
antidepressant medications in the treatment of major depres-
sive disorder in the general population or in psychiatric settings,
there remains a dearth of randomized controlled trials in people
with cancer. In Hart and colleagues recent meta-analysis of the
efficacy of pharmacological and psychological interventions for
cancer patients with clinically significant depression, only four
pharmacologic randomized controlled trials (RCTs) were identi-
fied, with a moderately positive effect size for the antidepressant
treatment arm of their meta-analysis (which incorporated trials
of mianserin, fluoxetine, desipramine, and paroxetine). This was
comparable to the effect size of five psychological treatment tri-
als (including cognitive-behavioral therapy and problem-solving
therapy) of depression in cancer patients.19 Other studies of phar-
macologic treatment of depression in cancer have provided more
284 Section VII psychiatric disorders
mixed results, in part due to the limitations of small sample sizes
and variable inclusion criteria regarding the severity of depres-
sive symptoms assessed.20 There are currently no evidence-based
recommendations regarding the superiority of any antidepres-
sant drug or class over another in cancer patients or in other
populations.
The efficacy of antidepressant medication for patients with sub-
threshold depression is still unclear, with mixed findings in the
literature. While a recent meta-analysis of studies of depressed
cancer patients found a significant and comparable positive
effect of antidepressant treatment in trials that included both
clinical depression and subthreshold depressive symptoms, 21
meta-analyses from the general psychiatry literature have not
found antidepressants to be effective for subthreshold depres-
sion.22,23 However, since comorbid medical illness is a risk factor
for progression to major depression, antidepressant medication
should be considered for select cancer patients with subthreshold
depression who fail to respond to psychotherapeutic measures or
who have additional risk factors for major depression (such as a
significant personal or family history of the illness) or who have
previously had a positive response to antidepressant medication.
A few studies have investigated the potential role of antide-
pressant medication in preventing depression in high-risk cancer
patient populations. Musselman and colleagues demonstrated a
beneficial effect of pre-treatment with the antidepressant parox-
etine in preventing the development of depression in melanoma
patients receiving high-dose interferon-alpha. 24 Two further
RCTs, both from the same group of investigators, have demon-
strated a positive effect of SSRI medications (citalopram and
escitalopram) in reducing the risk of depression in patients under-
going treatment for head and neck cancer.25,26 While these results
are encouraging, further research is needed to confirm the ben-
efit of prophylactic antidepressant use in such high-risk cancer
populations.
Choice of Antidepressant Medication
Choosing a medication to alleviate depression in cancer patients
requires careful consideration of a number of factors. These
include any prior response to treatment, medical comorbidities,
potential drug interactions, and route of administration. Some
cancer patients may be unable to take oral medications. The
delay in onset of action, the expected patient prognosis, and cur-
rent somatic symptom profile (e.g., pain, insomnia, agitation, hot
flashes), and the adverse effect profile of the antidepressant medi-
cation, are further important considerations.27 Table 37.2 lists the
antidepressants most commonly used for cancer patients, their
potential adverse effects, and specific considerations for use in a
cancer setting.
Antidepressant Classes
SSRIs and SNRIs
Selective serotonin reuptake inhibitors (SSRIs) and serotonin
norepinephrine reuptake inhibitors (SNRIs) are generally used
as first-line due to their tolerability and safety profile. They are
equally efficacious in the treatment of major depression, with
depressive symptoms improving after approximately four weeks
of an adequate dose. Many of the SSRIs and venlafaxine have also
been shown to be helpful in the alleviation of hot flash symp-
toms, which can result from hormonal treatments of some can-
cers. Venlafaxine and duloxetine are SNRIs, with venlafaxine
inhibiting serotonin reuptake at lower doses, thereby sharing
some of the side effects with the SSRIs, while inhibiting norepi-
nephrine reuptake at higher doses.
Atypical and Mixed Antidepressants
Bupropion is a dual norepinephrine-dopamine modulator (NDM)
that may improve sexual function and fatigue in cancer patients.
Nausea, dry mouth, constipation, headaches, irritability, and
insomnia are its most common side effects. High doses may lower
the seizure threshold, and its use is contraindicated in patients
with seizure disorders or eating disorders, or patients experienc-
ing alcohol withdrawal. Although rare, it may contribute to con-
fusion or psychotic symptoms in vulnerable patients, due to its
effect on dopamine.
Mirtazapine is a noradrenergic and specific serotonergic anti-
depressant. In addition to alleviating depressive symptoms, it
may be helpful for cancer-related anorexia, cachexia, and nau-
sea and vomiting. Side effects include constipation, drowsiness,
and, rarely, reversible neutropenia. Trazodone is a weak but spe-
cific inhibitor of serotonin and a post-synaptic serotonin recep-
tor blocker that has been used to treat insomnia, usually at doses
under 100 mg nightly. Its alpha blocking properties contribute to
risks of orthostatic hypotension and dizziness, and thus it should
be used cautiously in the elderly or fragile patients due to its
potential for increasing the risk of falling.
Reboxetine is a selective norepinephrine reuptake inhibi-
tor (NRI). It is reported to be effective in the treatment of apa-
thy, fatigue, concentration, and anxiety-related symptoms.
Agomelatine is a novel melatonergic antidepressant medication
that has agonistic effects on melatonin receptors and an antagonist
action on serotonin (5-HT2C) receptors. It is sleep-promoting,
weight neutral, and lacks sexual side effects and discontinuation
effects shown by most other antidepressants. Because of a poten-
tial effect on liver enzymes, monitoring of liver function tests is
recommended at the initiation of the treatment, following dose
adjustments, and periodically during treatment, and it should not
be used in the context of liver or renal impairment.
Tricyclic Antidepressants
Seldom used first-line as antidepressants due to their side-effect
profile, the tricyclic antidepressants (TCAs) may be used in
patients who have comorbid neuropathic pain, usually at lower
doses than are used for depression. Caution is used when prescrib-
ing TCAs to elderly patients, due to anticholinergic activity that
may contribute to constipation, urinary retention, and confusion,
as well as the alpha adrenergic blockade, which may contribute to
orthostatic hypotension and may increase risk of falls. Blocking
muscarinic receptors may alter cardiac conduction, and thus cau-
tion is used in prescribing TCAs in patients with pre-existing
arrhythmias.
Psychostimulants
Due to their rapid onset of action (days rather than weeks), the
psychostimulants (methylphenidate and dextroamphetamine) are
often used for their energizing effects in depressed cancer patients,
especially those with advanced or terminal disease. However, evi-
dence for their efficacy in alleviating depression remains sparse,
with only one RCT published to date.28 Their prolonged use at high
doses may, rarely, be associated with the development of a para-
noid psychosis. Due to their ability to stimulate the cardiovascular
 Chapter37 depressive disorders 285

Table37.2 Medications Used for Treatment of Depression in Cancer Patients

Drug Minimum Effective Dose Potential Side Effects Comments

SSRIs
All SSRIs:
Escitalopram 10 mg/day Nausea, dyspepsia, diarrhea, sweating, anxiety, Good first-line choices.
insomnia, headache with initiation; sexual Minimal hepatic P450 effects. Possible QT
Citalopram 20 mg/day dysfunction prolongation at high doses. Drops/dissolvable
formulations are options.
Sertraline 50 mg/day Discontinuation side effects more common.
Paroxetine 20 mg/day Most anticholinergic and sedating SSRIs Strong hepatic enzyme inhibitor; discontinuation
symptoms more common.
Fluoxetine 20 mg/day Longest half-life; strong hepatic enzyme inhibitor;
stimulating.
SNRIs
Venlafaxine 75 mg/day Nausea, headache, somnolence, insomnia, Additional use for neuropathic pain and hot flash
50 mg/day sweating, dizziness, anxiety, constipation, symptoms.
Desvenlafaxine sexual dysfunction Discontinuation symptoms common (venlafaxine).
60 mg/day
Duloxetine Venlafaxine may cause elevations in BP at high doses.
Avoid duloxetine in liver impairment.
Atypical Antidepressants
Mirtazapine (NaSSA) 15 mg/day Sedating, weight gain dry mouth Also available in orodispersible tablet; anti-nausea
properties.
Bupropion (NDM) 150 mg/day Weight neutral or loss, irritability. Activating; caution in cachectic patients; Seizure
Less sexual dysfunction risk at higher doses.
Reboxetine (NRI) 4 mg/day Insomnia, sweating, dizziness, tachycardia Activating; caution in comorbid cardiac disease.
Agomelatine 25 mg/day Nausea, dizziness, somnolence, insomnia, LFT monitoring required. May improve sleep and
headache generally very well tolerated.
Trazodone 50 mg/day Sedating, orthostatic hypotension, priapism Used mainly as sleeping aid; caution in elderly.
Tricyclic Antidepressants
(TCAs)
(e.g. amitriptyline) Unclear, but at least 75 Sedating, orthostatic hypotension, Main use in cancer patients is in neuropathic pain.
mg/day anticholinergic effects
Psychostimulants
Methylphenidate Unclear:Range of Insomnia, anxiety, tachycardia, hypertension, Rapid onset of action; activating; may reduce
Dexamphetamine 560mg/day tremor, confusion fatigue and improve concentration. Caution in
cardiac disease.
Modafinil 100200 mg/day Similar profile but less common Less dependence/tolerance effects.

Reprinted with permission from Fitzgerald P, Li M, Grassi L, Rodin G. Pharmacotherapy of depression in cancer patients. In:Grassi L, Riba M, eds. Psychopharmacology in Oncology And
Palliative Care:APractical Manual. Heidelberg:Springer; 2014.
Abbreviations:SSRI=selective serotonin reuptake inhibitor; SNRI=serotonin norepinephrine reuptake inhibitor; NaSSA=norepinephrine and specific serotonergic antidepressant;
NDM=norepinephrine-dopamine modulator; NRI=selective norepinephrine reuptake inhibitor; TCA=tricyclic antidepressant.

system, caution is advised when considering their use in patients
with hypertension or arrhythmias. Unlike the typical stimulant
medications, modafinil, a wakefulness promoting agent, does not
affect the release of dopamine or noradrenaline, but instead, likely
works through histamine release and agonism of noradrenaline
receptors. There are no published trials of its use in depressed
cancer patients, although extrapolating from other patient popu-
lations suggests that it may be helpful as an adjunct in cases of
treatment resistant depression.
Potential Adverse Effects of Antidepressants
All antidepressant medications have potential serious adverse
effects, which include an increased incidence of osteoporosis and
bone fractures in the elderly, a slightly elevated risk of gastrointes-
tinal hemorrhage, and hyponatraemia.27 Risk factors for the latter
include advanced age, female gender, low body weight, comorbid
medical conditions (including hypothyroidism, pneumonia, and
small cell lung cancer), and concomitant medications, including
diuretics, non-steroidal anti-inflammatory drugs (NSAIDs), and
chemotherapeutic agents. A rare but serious potential adverse
effect of most antidepressants is serotonin toxicity, known as sero-
tonin syndrome. The risk is increased if serotonergic antidepres-
sants are co-prescribed with other serotonergic drugs, such as
the analgesics fentanyl and tramadol or anti-emetic medications
such as metoclopramide and ondansetron. The signs of serotonin
toxicity include acute autonomic instability, confusion, tremor,
286 Section VII psychiatric disorders

and neuromuscular features (such as clonus, myoclonus, and to patients with clinically significant pre-treatment depression.
hyper-reflexia). In extreme cases, convulsions, coma, and death Linden and colleagues performed a meta-analysis of psychologic
can ensue. When suspected, it is important to stop all serotonergic treatment outcomes in cancer studies and found effect sizes to be
agents, to monitor closely, and to provide supportive care until roughly three times greater in studies in which patients were first
symptoms resolve. screened for elevated distress at study entry. 33 Beutel etal. recently
Drug Interactions published an RCT of short-term psychodynamic psychotherapy
in breast cancer patients with major depression, demonstrating a
Consideration should be given to potential drug interactions,
significant effect on depression remission over treatment as usual
including the potential for an antidepressant to effect hepatic
(OR=7.65; p < 0.001).34 While floor-effects are clearly significant
metabolism of cancer drugs via cytochrome p450 enzyme induc-
in demonstrating depression reduction in psychosocial studies,
tion or inhibition.29 Tamoxifen has been the most widely studied
Kissane et al. performed an RCT demonstrating the benefit of
in this context, because of early reports that indicated an asso-
supportive-expressive group therapy in preventing the emergence
ciation between antidepressants with strong 2D6 inhibition (such
of major depression in women with advanced (breast) cancer. 35
as fluoxetine and paroxetine) and reduced efficacy of tamoxifen
This is the only study to demonstrate a prophylactic benefit of psy-
in maintaining remission in breast cancer. While several studies
chotherapy in advanced cancer patients.
have confirmed that antidepressant drugs that have strong 2D6
Studies in the advanced cancer setting are limited, although
inhibition can reduce the conversion of tamoxifen to its active
a meta-analysis reported positive findings on a range of psycho-
metabolite, more recent studies indicate that this effect does not
therapeutic interventions (including CBT, supportive-expressive
appear to have an impact on breast cancer recurrence rates or
psychotherapy, and problem-solving therapy) in reducing depres-
survival.30 However, until further research resolves the debate, it
sive symptoms in this population. 36 However, none of the stud-
remains prudent to avoid potent CYP 2D6 inhibitors when pos-
ies identified focused on subjects with major depression. Patients
sible in preference for antidepressant options that have weak 2D6
with advanced disease may benefit from more individualized
inhibition (such as venlafaxine or citalopram).

Table37.3 Evidence-Based Recommendations for Use of Psychosocial

PSYCHOLOGICAL TREATMENTS Interventions to Treat Depression in Patients With Cancer
OFDEPRESSION
A wide range of specific psychotherapies has been used in the Intervention and Cancer Level of Subthreshold Major
Treatment Status Evidence* Depression Depression
treatment of depression in cancer. The type of psychotherapy that
is optimal may depend on individual and disease-related factors, Relaxation Skills Training
including severity of depression, the patients reflexive capacity, Recently diagnosed I Yes No
cancer stage, treatment status, and the functional performance Post-surgery I Yes No
level of the patient. Psychotherapy may be delivered individually, During chemotherapy I Yes No
in a group setting, or with the patients partner and/or family. During radiotherapy I Yes No
Recently diagnosed patients with cancer with mild to moderate
Terminal phase of illness II Yes No
depression may benefit from psycho-education, cognitive behav-
ioral therapy (CBT), relaxation strategies, and problem-solving Psychoeducation
approaches.20 In the advanced or terminally ill cancer popu- Recently diagnosed I Yes No
lation, existential, life narrative, dignity conserving, and Undergoing surgery II Yes No
meaning-centered interventions may be most appropriate. 20,31 During chemotherapy II Yes No
Offering a supportive, validating, and nonjudgmental presence,
Cognitive Behavioral Therapy
providing realistic reassurance, and emphasizing prior strengths
Newly diagnosed I Yes Yes
are therapeutic. Living with uncertainty, as well as balancing hope
and grief, are difficult tasks but important foci of therapy for the During chemotherapy I Yes Yes
depressed cancer patient. During radiotherapy II Yes No
Advanced cancer I Yes Yes
Effectiveness of Psychological Treatments Completion of active treatment II Yes No
ofDepression in Cancer Supportive-Expressive Therapy
The evidence for the effectiveness of psychological therapies in Post-surgery II Yes No
alleviating depression in cancer patients has been mixed and dif- During chemotherapy II Yes No
ficult to interpret, predominantly due to wide heterogeneity in
During radiotherapy II Yes No
terms of disease-related factors, types of interventions employed,
Advanced cancer I Yes Yes
and severity of depression present across the different studies in
the literature. Overall, systematic reviews and meta-analyses dem- Reprinted with permission from Li M, Fitzgerald P, Rodin G. Evidence-based treatment of
onstrate medium to large positive effect sizes across a wide range depression in patients with cancer. J Clin Oncol. 2012;30(11):11871196. Erratum in:J Clin
Oncol. 2013 Oct 1;31(28):3612.
of psychosocial treatments, although the bulk of this literature is
*Levels of evidence, in accordance with Canadian Network for Mood and Anxiety
based on group as a whole interventions in subjects without clini-
Treatments (CANMAT)37 are the following:I, at least two RCTs with adequate sample
cally significant levels of depression.32 The effectiveness of psycho- sizes, preferably placebo-controlled, and/or meta-analysis with narrow CIs; II, at least one
logic interventions is most robust for studies that limit recruitment RCT with adequate sample size and/or meta-analysis with wide CIs.

therapies, which can accommodate scheduling flexibility and can
be tailored to their unique life experiences and needs. In the last
several years, targeted and manualized individual psychothera-
pies for cancer patients with advanced illness have developed,
including such modalities as dignity therapy, meaning-centered
therapy, and a brief supportive-expressive intervention referred
to as CALM (managing cancer and living meaningfully). These
interventions are discussed in more detail in Chapters6062.
In view of the significant heterogeneity in the evidence base
for psychosocial interventions for depression in cancer, Jacobsen
has proposed developing clinically relevant recommendations
per intervention type, based on the evidence for efficacy of each
intervention in the context of disease stage or treatment status. 32
Such an approach can identify future research needs in discrete
cancer populations and may facilitate interpretations of the cur-
rent literature. Asummary of evidence using such an approach is
provided in Table 37.3.20,37
CONCLUSIONS
As depression affects over 30% of cancer patients at some point
along their illness experience, and has numerous negative con-
sequences, its identification and management are important
aspects of quality cancer care. Individualizing interventions for
the depressed cancer patient and adopting a multicomponent
approach based on biopsychosocial needs, depressive symptom
severity, and disease-related factors such as treatment phase and
cancer stage are recommended for optimal care.
Future research is needed to better define the phenomenology
of subthreshold depressive presentations in cancer patients, and
to strengthen the evidence base for treatment of depression in
this population. Head-to-head pharmacotherapy trials, more psy-
chotherapy trials targeting clinically significant depression, and
studies on the efficacy of combined pharmacotherapy and psycho-
therapy, including more collaborative care approaches to treat-
ment, will enable clinicians to better manage comorbid depression
in cancer patients.
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 CHAPTER38
Suicide
Hayley Pessin and William S.Breitbart
Unfortunately, identification and assessment of individuals at risk
for suicide continue to be vital topics for clinicians working with
cancer patients, as patients with cancer are at increased risk for
suicidal ideation and behavior when compared to the general pop-
ulation1 and other medically ill populations.2,3 However, suicidal
ideation and behavior vary widely with regard to severity and
potential risk and manifest in cancer patients in a variety of forms
and contexts. This chapter will describe suicidality in cancer, its
prevalence rates, and risk factors, and will also provide clinical
guidelines for assessment and intervention with patients who
express suicidal ideation or a desire for hastened death.4
Although some terms may be used interchangeably, it can be help-
ful to define several constructs related to suicidality (see Table 38.1).
Suicidal ideation can, but does not necessarily, reflect an actual wish
to harm oneself. In fact, less severe forms of suicidal ideation, such
as a fleeting wish to die, are often normal in cancer patients and
may be more reflective of a hypothetical exit plan, an expression
of despair, or a way of letting go, and may be an adaptive way of
managing distress.5 Suicidal ideation is of greater concern when it
persists or involves an actual suicidal intent or plan. Finally, other
terms closely related to suicidality in end-of-life care are physician-
assisted suicide (PAS), or what more recently has been termed physi-
cian aid in dying (PAD), and6 euthanasia will be discussed as well.
SUICIDE RISK IN CANCER
Although few cancer patients actually commit suicide compared
to the number who report passive suicidal ideation and desire for
hastened death, individuals with cancer have approximately twice
the risk of suicide compared to the general population7 and other
medical populations.8 While occasional thoughts of suicide are rel-
atively common among cancer patients, research suggests that per-
sistent suicidal ideation is far less frequent, existing mostly among
patients with advanced disease, in hospital or palliative care set-
tings, or experiencing severe pain or significant depression.9
Moreover, the incidence of completed suicide in cancer patients
has decreased over time, possibly due to improvements in preven-
tion, detection, treatment, and psychosocial care.10 However, the
available data may underestimate the true prevalence of suicidal
ideation in cancer due to the limitations of research interviews and
measures to elicit this information. This research may also under-
estimate suicide rates given the unknown frequency of unreported
overdoses assisted by families or decisions to stop critical aspects of
care such as nutrition and hydration.9 Furthermore, patients may
be utilizing physician-assisted suicide in clinical practice far more
frequently than the literature indicates, as healthcare profession-
als may be reluctant to report this information to avoid possible
legal and political ramifications.4 Finally, it should be noted that
suicidality is often multifaceted and multicausal and may include
a complex combination of psychosocial, psychological, and neuro-
biological factors.10,11 Therefore, the assessment of suicide risk is
a complex process, and an awareness of the specific factors asso-
ciated with suicidality is essential to help identify the need for
further evaluation and to assess and effectively manage suicidal
ideation and behavior in cancer patients.
SPECIFIC SUICIDE RISK FACTORS IN
CANCER
Demographic and Illness Characteristics
Several studies have demonstrated the impact of increased age on
suicide in cancer patients, particularly among individuals who are
65 and older, and even higher rates have been observed among
Table38.1 Suicide and Cancer:Key Concepts and Definitions
Suicidal ideation Can range from a fleeting passive wish to die,
often normal in cancer patients at all stages
of disease, to more severe preoccupation with
thoughts of harming oneself.
Suicidal intent or plan A desire to act on these feelings is expressed
and a potential method is described.
Desire for hastened A wish to die sooner than might occur by
death natural disease progression and may manifest
among patients with varying degrees of
severity:
Apassive wish (either fleeting or persistent)
for death without an active plan
Arequest for assistance in hastening death
through withdrawal of essential aspects of
medical care
An active desire and plan to commit suicide.
Physician-assisted A physician provides a prescription for
suicide (PAS) medication to a patient to use to end his or
her life.
Euthanasia A physician administers a fatal overdose of
medication at the patients request.
Adapted from Rosenfeld B, Methodological issues in assisted suicide and euthanasia
research. Psychol Public Policy Law. 2000;6(2):559574.
290 Section VII psychiatric disorders
patients who were over 80.7,12 More recently, studies have indicated
that adolescent and young adult cancer patients,13 as well as adult
survivors of childhood cancer, are also more likely to express sui-
cidal ideation and to be at greater risk for suicidal behavior.14,15 In
addition, male cancer patients are also at an increased risk for sui-
cide.7 There is also evidence that cancer patients more frequently
commit suicide in the months following initial diagnosis and in
the advanced stages of disease.7,8,10 Studies have found that higher
suicide rates were more common in patients with lung, pancreatic,
stomach, esophagus, head and neck cancers, and prostate cancers.
However, these findings are likely confounded with other comor-
bid factors such as age, gender, psychiatric conditions, or poor
prognosis.7,8,10
Depression and Hopelessness
The comorbidity of suicide with major depression is common both
in the general population and among cancer patients.16,17 Astudy
of advanced cancer patients found that the incidence of depres-
sion is particularly high for individuals with cancer, and 58% of
patients reporting significant desire for hastened death also met
criteria for major depression. In fact, depression emerged as the
strongest predictor of desire for hastened death.18 Hopelessness
has been identified as an even stronger predictor than depression
of suicidal ideation and desire for hastened death in advanced
cancer.19,20 However, the presence of both depression and hope-
lessness together may be the strongest clinical marker for high
desire for hastened death and completed suicides.21
Helplessness, Loss of Control, and Burden to Others
Individuals with cancer who present with an excessive need to
control all aspects of living or dying may be particularly vulner-
able to suicide. Other personality factors, such as concerns about
loss of autonomy, dependency, and a strong need to control the cir-
cumstances of ones death, are important predictors of desire for
hastened death.22 Cancer-related events, physical debilitation, and
impairment may elicit feelings of helplessness among any patient
with cancer. Feelings of excessive burden accompanied by percep-
tions of helplessness and loss of control among cancer patients have
also been found to be associated with increased suicidal ideation,
a desire for hastened death, and requests for assisted suicide.21 In
combination, these concerns may progress to a more pervasive con-
dition termed demoralization syndrome, which includes feelings of
hopelessness, helplessness, incompetence, dependency, burden,
loss of meaning, and existential distress, which is also indicative of
a higher risk for desire for death and suicide.23
Pain and Physical Symptoms
Several studies have demonstrated that most cancer suicides were
preceded by inadequately managed or poorly tolerated pain and
that pain significantly predicted suicide, desire for death, and
requests for assisted suicide.7,10,2426 Physical symptoms other
than pain also have a relationship with suicide and desire for has-
tened death, as they can induce psychological distress and escalate
to suicidal thoughts or behaviors. There is a link between specific
physical symptoms (i.e., shortness of breath, fatigue) and fre-
quency of suicidal ideation,27,28 as well as an association between
the number of physical symptoms, the severity of symptom dis-
tress, and a higher desire for hastened death.17,21 Finally, as cancer
treatments advance and cancer becomes more chronic for some
patients, new challenges may emerge that can increase desire for
death, such as long-term effects of treatment, living with physical
disabilities, and coping with uncertainty about the future.10
Cognitive Dysfunction and Delirium
Psychiatric consultation data at Memorial Sloan Kettering Cancer
Center showed that one-third of suicidal patients were simultane-
ously suffering from delirium. Since delirium and cognitive impair-
ment cloud a patients reasoning and impair decision-making
abilities, these factors may result in an inability to judge the con-
sequences of ones behavior and may increase the risk of impulsive
behavior.28 Furthermore, an awareness of cognitive impairment can
be distressing to patients and can fuel a desire for death.22 Cognitive
impairment and delirium are most prevalent in advanced cancer
patients, making this population more vulnerable.28
Social Support
A growing body of research has demonstrated and important
relationship between social support and suicide. Social and psy-
chological factors (e.g., concern regarding a loss of dignity; fear
of becoming a burden to others) comprised four of the five most
frequently cited reasons for euthanasia requests. 29 Several stud-
ies have found significant correlations between lower levels of
social support and a higher desire for death in advanced cancer
patients.1921
Psychiatric History and Personality Factors
Pre-existing psychiatric disturbance significantly increases the
risk of desire for hastened death and suicidal ideation.30 In fact,
Holland (1982) argued that it is extremely rare for a cancer patient
to actually commit suicide without some degree of premorbid
psychopathology.31 Psychiatric consultation data from Memorial
Sloan Kettering Cancer Center indicates that one-third of cancer
patients who presented with suicidal ideation were also diagnosed
with a major depression, half were diagnosed with an adjustment
disorder with both depressed and anxious features, and half of
the patients had a diagnosable personality disorder as well.28
Moreover, a history of past suicide attempts or a family history
of suicide has been found to increase suicide risk significantly.32
Spiritual and Existential Concerns
Terminally ill cancer patients reporting low spiritual well-being
were more likely to endorse desire for hastened death, hopeless-
ness, and suicidal ideation.33 When faced with a cancer diagnosis,
individuals often experience distress and despair and commonly
dwell on issues of life and death. For cancer patients with termi-
nal illness, existential issues become paramount as they consider
loss of meaning, purpose, or dignity, awareness of incomplete life
tasks, regret, and anxiety around what happens after death. These
difficulties with existential issues have also been tied to desire for
hastened death.33,34
LEGAL AND ETHICAL ISSUES
IN ASSISTED SUICIDE
The legal and ethical issues that should be considered with regard
to assisted suicide continue to change and evolve both within the
field of medicine and the judicial system, and remain a source
of controversy and debate. Those opposing legalization have

expressed concerns that requests for assisted suicide are often
due to depression, distorted beliefs that one is a burden, or the
other potentially treatable clinical correlates of desire for hastened
death, and that legalization may place certain more vulnerable
communities at risk of abuse, error, and coercion.35,36 Advocates
for legalization argue that allowing patients a legal and socially
accepted way of controlling their own death would avoid people
having to plan in secrecy and endure the difficult process alone.
They also feel that safeguards, such as a thorough informed con-
sent process and the requirement of an independent second opin-
ion, would protect against most risks.37
Regardless of ones position on the issue of assisted suicide,
comprehensive and detailed assessment of cancer patients is criti-
cal to determine if conditions related to desire for hastened death
can be modified to enhance patients quality of life, ameliorate
unnecessary suffering, and ensure that patients are not requesting
assisted suicide impulsively or without a clear understanding of
possible alternative solutions. Clinicians should allow patients to
discuss their wishes for hastened death and physician-assisted sui-
cide in an open, frank manner. Being empathic and nonjudgmen-
tal is essential to facilitating what are often difficult discussions.
Through such conversations, one may be able to identify underly-
ing reasons for such wishes, such as hopelessness or depression,
and offer appropriate interventions.9
In spite of the heated debate, the practice of assisted suicide
by providers is still relatively rare. Legalization occurred in 1997
when the state legislature of Oregon passed the Oregon Death
with Dignity Act, which the US Supreme Court upheld with the
Gonzales v.Oregon decision in 2006.38 The legalization of assisted
suicide remains under the jurisdiction of each state in the United
States, and currently only Oregon, Montana, and Washington have
legalized physician-assisted suicide. Assisted suicide and eutha-
nasia are also legal in Europe in the Netherlands, Switzerland,
Belgium, and Luxembourg.39 Asystematic review of all assisted
deaths in Europe and the United States found that assisted suicide
comprises approximately 0.1%0.2% of all deaths in the United
States and Luxembourg, and higher percentages ranging from
1.8%2.9% in other countries in Europe. 39 In Oregon, a total of
1,173 people have obtained prescriptions and 752 have died from
ingestion of the medication prescribed since the passing of the
Death with Dignity Act (DWDA) in 1997.40 Far more patients
talk to their families and physicians regarding the possibility of
physician-assisted suicide compared to those terminally ill who
actually die using the Death with Dignity Act,41 suggesting that
even when it is legally permissible, relatively few patients resort
to assisted suicide. When patients do choose to receive a prescrip-
tion to end their life, the most commonly reported reasons have
been wanting to control the circumstances of their death or to die
at home, loss of independence, concerns about pain and physical
symptoms in the future, poor quality of life, and the inability to
care for oneself.6
PRACTICE GUIDELINES
Assessment
The early and careful assessment of suicide risk is the first step
toward appropriate intervention with high-risk cancer patients, and
can often avert suicide.10,42 However, healthcare professionals may
remain wary of conducting suicide risk assessment or responding
Chapter38 suicide 291
to desire to die statements because of fear of diminishing patients
hope or provoking emotional discussions.43 Yet, there is no clinical
research evidence to support the myth that asking about suicidal
thoughts increases suicidal acts. In fact, such reservations run coun-
ter to evidence that patients report a sense of relief and diminished
suicidal urges once their distress and need for control over death
have been acknowledged.30 Furthermore, it is recommended that
practitioners use the assessment as a therapeutic opportunity to ask
patients about their concerns about the future, to provide accurate
information to allay unwarranted fears, and to allow patients to
express feelings that may be difficult to discuss with others.44
Hudson, Schofield, and colleagues (2006) proposed guide-
lines for health professionals conducting suicide assessment (see
Table 38.2).44 Although developed for use among patients with
advanced disease, these principles and strategies for therapeu-
tic communication are applicable to cancer patients at all stages.
Systematic reviews of randomized controlled trials have shown
that this approach ameliorates distress and promotes psychologi-
cal well-being.44,45 Among those patients who directly endorse
desire for death, or who exhibit suicidal ideation, suicidal behav-
iors, or depression, clinicians should thoroughly evaluate the
extent of ideation, plan, and intent (see Table 38.3). Evaluations of
the severity and intensity of suicidal ideation will inform appro-
priate intervention and treatment planning.
It is recommended that practitioners evaluate a multitude of
factors in order to identify individuals who are at highest risk for
suicidal behavior (see Table 38.4).46 Acomprehensive assessment
should definitely include the following:a predisposition to suicidal
behavior (i.e., a history of suicidal behavior, psychiatric diagnosis,
and demographic risk factors); precipitants or stressors; symptom-
atic presentation (i.e., depression, anger, and agitation); nature of
suicidal thinking (i.e., frequency, intensity, duration, specificity of
plans, availability of means, and explicitness of intent); hopeless-
ness; previous suicidal behavior (i.e., frequency, method, lethality,
and outcome); impulsivity; lack of protective factors (i.e., social sup-
port, problem-solving skills, and mental health treatment);47 and
somatic symptoms, which should be carefully assessed to deter-
mine whether their etiology is psychiatric or organic in nature.30,48
Assessment Tools
Measures that may be useful in the assessment of suicidal-
ity include the Desire for Death Rating Scale (DDRS),18 the
Schedule of Attitudes Toward Hastened Death (SAHD),49 and the
Demoralization Scale, 50 which have all been validated in popu-
lations with advanced disease. Specific measures of suicidality
that are appropriate for use in medically ill populations include
the Beck Scale for Suicidal Ideation51 and the Modified Scale
for Suicidal Ideation.52 These measures assess the duration and
frequency of ideation, sense of control over making an attempt,
deterrents, and amount of actual preparation. In addition, the
use of measures to assess the severity of depression, such as the
Hospital Anxiety and Depression Scale (HADS)53 or the Patient
Health Questionnaire (PHQ-9), 54 or of hopelessness, such as the
Beck Hopelessness Scale (BHS)55 or a brief three- or seven-item
version for medically ill patients, 56 may be useful in identifying
high-risk patients. Standardized measures utilized in a sensitive
manner, in the context of a trusting patient-provider relationship,
can help clinicians to identify patients needs and to tailor appro-
priate interventions.
292 Section VII psychiatric disorders

Table38.2 General Guidelines for Suicide Assessment

Be alert to your responses Be aware of how your responses influence discussions

Be open to hearing concerns
Assess contributing factors
Respond to specific issues
Conclude discussion
After discussion
Monitor your attitude and responses
Demonstrate positive regard for the patient
Seek supervision
Gently ask about emotional concerns
Be alert to verbal and nonverbal distress cues
Encourage expression of feelings
Actively listen without interrupting
Discuss desire for death using patients words
Permit sadness, silence, and tears
Express empathy verbally and nonverbally
Acknowledge differences in responses to illness
Prior psychiatric history
Prior suicide attempts
History of alcohol or substance abuse
Lack of social support
Feelings of burden
Family conflict
Need for additional assistance
Depression and anxiety
Existential concerns, loss of meaning and dignity
Cognitive impairment
Physical symptoms, especially severe pain
Acknowledge patient or family fears and concerns
Address modifiable contributing factors
Recommend interventions
Develop plan to manage more complicated issues
Summarize and review important points
Clarify patient perceptions
Provide opportunity for questions
Assist in facilitating discussion with others
Provide appropriate referrals
Document discussion in medical records
Communicate with members of the treatment team

Adapted from Hudson PL, etal., Responding to desire to die statements from patients with advanced disease:recommendations for health
professionals. Palliat Med. 2006;20(7):703710; Clinical Practice Guidelines for the Psychosocial Care of Adults With Cancer Camperdown,
NSW:National Breast Cancer Centre and National Cancer Control Initiative; 2003.

Intervention Strategies suicide. An appropriate therapeutic response to these discussions

Thorough psychological assessment and competent intervention
for suicide may provide cancer patients with great relief from dis-
tress and suffering and ultimately may save lives. It is essential that
all treatments targeting suicidality, regardless of technique and
modality, are informed by careful attention to the risk factors for
should include empathy, active listening, management of realistic
expectations, permission to discuss psychological distress, and a
referral to other professionals when appropriate.
Initial intervention should focus on determining imminent
risk and making necessary plans and arrangements for patient

Table38.3 Assessing the Severity of Suicidal Ideation
Suicidal Many patients have passing thoughts of suicide, such as,
ideation If my pain was bad enough, Imight... Have you had
thoughts like that?
Have you found yourself thinking that you do not want to
live or that you would be better off dead?
Suicidal Have you stopped or wanted to stop taking care of
plan yourself?
Have you thought about how you would end your life?
Suicidal Do you plan or intend to hurt yourself? What would you
Intent do?
Do you think you would carry out these plans?
Adapted from Breitbart W, Suicide risk and pain in cancer and AIDS patients.
In:Chapman CR, ed. Current and Emerging Issues in Cancer Pain:Research and Practice.
NewYork:Raven Press; 1993:4965.
Table38.4 Questions to Ask Patients and Family When Assessing
Suicidal Risk
Acknowledge that Most patients with cancer have passing thoughts
these are common about suicide, such as I might do something if it
thoughts gets bad enough. Have you ever had thoughts
like that?
Have you had any thoughts of not wanting to live?
Have you had those thoughts in the past few
days?
Assess level of risk Do you have thoughts about wanting to end your
life?
How? Do you have a plan?
Do you have any strong social supports?
Do you have pills stockpiled at home?
Do you own or have access to a weapon?
Obtain prior Have you ever had a psychiatric disorder, suffered
history from depression, or made a suicide attempt?
Is there a family history of suicide?
Assess substance Have you had a problem with alcohol or drugs?
abuse
Assess bereavement Have you lost anyone close to you recently?
Identify medical Do you have pain that is not being relieved?
risks
How has the disease affected your life?
How is your memory and concentration?
Do you feel hopeless?
What do you plan for the future?
Adapted from A.P.O. Society, ed., Quick Reference for Oncology Clinicians:The Psychiatric
and Psychological Dimensions of Cancer Symptom Management Charlottesville, VA:IPOS
Press; 2006.
safety (see Table 38.5).46 Appropriate interventions may include
psychiatric hospitalization for severely suicidal patients, the use
of suicide prevention resources, contracting with the patient for
safety, limiting access to potential means such as pills or guns,
and involvement of family or friends in monitoring the patient.46
However, it should be noted that psychiatric hospitalization may
Chapter38 suicide 293
Table38.5 Interventions for the Suicidal Patient
Serious suicidal Provide constant observation and further
threats assessment.
Dangerous objects like guns or intoxicants
should be removed from the room or home.
The risk for suicidal behavior should be
communicated to family members.
Not acutely suicidal Patient should agree to call when feeling
and medically stable overwhelmed, making a contract with the
physician to talk about suicidal thoughts in the
future rather than to act on them.
Acutely suicidal Room searches should be conducted to
inpatients make sure there are no means available for
self-destructive behavior.
The patient should be under constant
observation from the time suicidal thoughts are
expressed.
Severely suicidal Psychiatric hospitalization is warranted, either
outpatients whose by voluntary or by involuntary means.
suicidal thoughts are Apsychiatrist can assist in making these
not caused by their arrangements. Document medical action and
medical condition or reasoning in the crisis.
medication
Adapted from A.P.O. Society, ed., Quick Reference for Oncology Clinicians:The Psychiatric
and Psychological Dimensions of Cancer Symptom Management.Charlottesville, VA:IPOS
Press; 2006.
not be ideal or realistic for severely medically ill patients, and other
strategies may need to be utilized. In these cases, crisis interven-
tion and the mobilization of support systems may act as external
controls to strongly reduce the risk of suicide. 57
Recognition of the prominent risk factors for suicide (see
Table38.5) should also inform targeted intervention strategies and
treatment plans that may reduce suicidality, such as the aggres-
sive management of pain, physical symptoms, delirium, and
cognitive impairment.48 Antidepressant medications, in tandem
with supportive psychotherapy, cognitive-behavioral techniques,
and patient and family education, are the most effective means
of improving depressive symptoms, hopelessness, and suicidal
ideation.58,59 Pharmacological interventions should also include
analgesics, anxiolytics, or narcoleptics to treat any accompanying
symptoms of anxiety, agitation, psychosis, or pain. 22,30
While not an exhaustive review of available and effective thera-
pies, the following interventions may be helpful in managing and
reducing suicidal ideation and desire for death in cancer patients.
Both individual and group supportive psychotherapy for cancer
patients can provide additional support by assuaging feelings of
isolation, bolstering coping skills, and addressing existential con-
cerns. 34,46,60 Cognitive-behavioral techniques tailored to manage
cancer patients physical symptoms and to challenge cognitive
distortions driving suicidal ideation and hopelessness may be
particularly helpful. 6163 Interventions based in mindfulness
theory, which teach patients to focus on the moment, may help
to alleviate distress and fears about the future. 64 Furthermore,
treatments that use mindfulness, combined with behavioral
techniques that focus on emotion regulation, such as dialectical
behavior therapy (DBT)65 or acceptance and commitment therapy
(ACT),66 may also be effective in managing suicidal behavior in
294 Section VII psychiatric disorders
cancer patients. Finally, interventions such as meaning-centered
psychotherapy (MCP)67,68 or dignity therapy 69,70, which focus on
enhancing patients sense of meaning and dignity, may reduce
suicidal ideation by effectively addressing spiritual and existen-
tial suffering.71
Interventions for Family Members Following
Completed Suicide
If a patient chooses to end his or her own life, good clinical prac-
tice should include addressing the needs of the patients family
so as to reduce the chances of complicated bereavement.72 In
order to provide effective support, it is essential to be aware of
the unique reactions commonly found among suicide survivors.
These include the desire to make meaning of the suicide and to
question why it happened, feelings of guilt, blame, and responsi-
bility for the death, and a heightened feeling of rejection or aban-
donment, often accompanied by anger toward the deceased and
feelings of stigmatization, shame, and embarrassment.7275 As a
result of these responses, family members are highly vulnerable
and typically struggle with isolation and lack of social support
at a time when it is needed most and intervention can be invalu-
able.72,75 Interestingly, a recent study noted no differences in
depression, grief, and use of mental health services among family
members of patients who requested physician aid in dying when
compared to family members of patients who did not. In fact,
these family members reported that they were more prepared
and accepting of the death and had fewer regrets about how their
family member died.76
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 CHAPTER39
Anxiety Disorders
Joseph A.Greer, James MacDonald, and Lara Traeger
INTRODUCTION
Anxiety is a natural, generally adaptive response that elicits cogni-
tive, affective, physiological, and behavioral changes to prepare an
individual for defending against potential danger or threat. For
most people, the diagnosis of cancer represents a significant threat
to ones well-being, and the associated anxiety will often help
motivate efforts to seek appropriate evaluation, treatment, and
support. However, a number of patients will experience elevated
symptoms that meet threshold for an anxiety disorder, causing
marked distress and impairment in functioning.1 For those with
a new diagnosis of cancer, the many uncertainties inherent to the
process of medical treatment often exacerbate anxiety as patients
repeatedly anticipate the results of imaging studies and prepare
for intensive procedures and, at times, toxic cancer therapies.
Such anxiety may manifest as poor treatment adherence, such as
refusing to undergo needed biopsies and scans due to phobias, or
excessive worry about disease progression and seeking constant
reassurance from clinical providers. Using a collaborative model
between oncology and mental health clinicians, the goal of care
is to help patients identify the nature and consequences of their
anxiety symptoms in order to implement appropriate interven-
tions for reducing distress and enhancing coping throughout can-
cer treatment and survivorship.
The focus of this chapter is to describe the clinical manifestation
of anxiety in patients diagnosed with cancer. We review the epi-
demiology, presenting characteristics, assessment methods, and
evidence-based treatments of anxiety in this population. Finally,
we highlight the cancer-related considerations that may impact
care and treatment planning.
PREVALENCE AND CORRELATES OF
ANXIETY IN PATIENTS WITH CANCER
Systematic reviews and large cohort studies reveal that the prev-
alence of anxiety in patients with cancer varies considerably
from approximately 10% to 30% depending on the method (e.g.,
use of diagnostic criteria versus symptom scales) and timing of
assessment.1,2 Although a cancer diagnosis and subsequent treat-
ment experience can trigger a new onset of an anxiety disorder,
patients more often report an exacerbation of an existing problem
with anxiety due to the medical stressor. Anxiety symptoms also
appear to persist over time and remain a concern for long-term
cancer survivors.
Often co-occurring with other symptoms such as depression,
dyspnea, nausea, and pain, anxiety has a strong independent rela-
tionship with worse health-related quality of life. 3,4 Moreover,
anxiety may interfere with cancer treatment, given that these
symptoms are associated with less trust in providers, delays and
reductions in chemotherapy doses, and more aggressive medical
care at the end of life.57 Throughout the cancer care trajectory,
many patients will experience increased anxiety as they cope with
transitions in life roles, loss of functioning, financial pressures,
and existential concerns regarding their mortality.
CLINICAL PRESENTATION OF ANXIETY
INPATIENTS WITH CANCER
As shown in Figure 39.1, anxiety consists of cognitive, emotional,
physical, and behavioral components. For example, a 60-year-old
man undergoing treatment for lung cancer may report breath-
lessness (physical), which causes him to worry about his disease
spreading (cognitive). As he anticipates his next CT scan, he finds
himself becoming increasingly nervous and edgy (emotional), at
times withdrawing from social supports and avoiding physically
strenuous activities that trigger his breathlessness (behavioral).
The withdrawal from usual activities then leads to deconditioning
and worsening functional status, which he may inaccurately inter-
pret as cancer progression. Thus, while this avoidant coping style
may provide some momentary relief from his distress, it nonethe-
less perpetuates the cycle of anxiety.
Table 39.1 provides an overview of anxiety disorders in the
Diagnostic and Statistical Manual of Mental Disorders (5th edi-
tion; DSM-5)8 as well as cancer-specific considerations that may
influence the presentation of symptoms and treatment planning.
Although each anxiety disorder has its own set of diagnostic cri-
teria, most share the common features of heightened focus on per-
ceived danger and efforts to avoid or escape from such threats. As
noted previously, many patients who present with anxiety, such as
phobias, generalized anxiety, and panic disorder, will have a his-
tory of clinically significant anxiety that is reactivated by the cancer
diagnosis. For others, anxiety will present as new symptoms in the
context of adjusting to the many lifestyle changes, diagnostic and
treatment procedures, as well as side effects associated with can-
cer therapy. However, the primary challenge for both oncology and
mental health clinicians in delivering comprehensive cancer care
is to discern the underlying causes for the anxiety, especially given
the considerable overlap in somatic symptomatology with cancer.
 Chapter39 anxiety disorders 297

Cognitive
Focus on Threat;
Worry Excessively;
Catstrophize;
Underestimate
Coping Resources

Behavioral Emotional
Avoid Threat, Anxiety Nervous; Scared;
Fight/Flight/Freeze, Edgy; Anxious;
Seek Reassurance Panicky

Physical
Muscle Tension;
Sweaty; Flush/Pale;
Palpitations; Fainting;
Hypertension; Chest
Tightness;
Breathless; GI
Discomfort; Diarrhea;
Nausea

Figure39.1 Components of anxiety.

Several disease- and treatment-related factors make the dif-
ferential diagnosis for anxiety symptoms in patients with can-
cer especially challenging. In the example above, although the
patients breathlessness may be due to panic disorder, clinicians
must also consider the possibility of cancer progression, under-
lying lung disease, and chemotherapy-induced anemia, among
other factors. As noted in Table 39.1, several medications com-
monly used in cancer care, such as corticosteroids or anti-emetics
(e.g., prochlorperazine), may cause anxiety symptoms. Similarly,
some medical conditions, such as congestive heart failure, pleural
effusion, pulmonary embolism, among others, may also present
with breathlessness, chest tightness, and palpitations, which may
appear as anxiety. Therefore, prior to initiating pharmacological
or behavioral treatments for anxiety, a comprehensive assessment
with a multidisciplinary team is essential to consider potential
cancer-related factors that could contribute to the patients symp-
toms and distress.9
ASSESSMENT OF ANXIETY IN PATIENTS
WITH CANCER
Recognizing that anxiety and depression can negatively impact
not only quality of life but also cancer treatment and outcomes,
several national and international organizations have called for
the implementation of routine distress screening across the tra-
jectory of cancer care.10 Prior to conducting a comprehensive
biopsychosocial assessment of anxiety in the context of cancer,
oncology clinics would ideally implement a universal approach
to identify distressed patients.11 Relying on clinicians simply to
ask about anxiety and depression during clinical encounters is not
sufficient, in part because clinicians fail to recognize psychosocial
distress in nearly half of patients. Recently published guidelines
from the American Society of Clinical Oncology (ASCO) on the
screening, assessment, and treatment of anxiety in patients with
cancer12 include the following recommendations:
All patients should receive periodic screening for anxiety symp-
toms at regular intervals from the time of cancer diagnosis and
when clinically appropriate, such as with changes in disease sta-
tus or transitions in care.
Screening tools must be valid and reliable with established
and clinically meaningful threshold scores to indicate level of
distress.
Given the prevalence of generalized anxiety disorder and its
comorbidity with other anxiety and mood disorders, patients
should be screened for generalized anxiety disorder (GAD).
The Generalized Anxiety Disorder-7 scale is recommended to
screen for anxiety.
Screening methods should consider the functional impairments
associated with anxiety symptoms as well as adaptations that
may be required for individuals from different cultural back-
grounds or those with learning disabilities or cognitive deficits.
Screening is the first step in the evaluation and treatment of
anxiety in patients with cancer. Those who report elevated symp-
toms per established cutoff scores (e.g., in the moderate to severe
298 Section VII psychiatric disorders

Table39.1 Diagnostic Features of Anxiety Disorders and Cancer-Specific Considerations

Disorder DSM-5 Diagnostic Features Cancer-Specific Considerations

Generalized Anxiety Disorder
Specific Phobia
Panic Disorder
Agoraphobia
Social Anxiety Disorder
Substance/Medication-Induced
Anxiety Disorder
Anxiety Disorder Due to
Another Medical Condition
At least 6months of excessive worry about a number of
events or activities, which is difficult to control.
Anxiety is associated with several symptoms (e.g.,
restlessness, fatigue, difficulty concentrating, irritability,
muscle tension, and sleep problems).
Persistent fear of a specific object (e.g., needles) or situation
(e.g., enclosed places).
Object or situation provokes immediate anxiety and is
actively avoided or endured with extreme fear.
Recurrent unexpected panic attacks that develop abruptly.
Panic attack followed by at least one month of
(1)persistent worry of having further panic attacks and/
or (2)maladaptive change in behavior due to panic (e.g.,
avoidance of exercise).
Persistent fear of two or more of following situations:public
transportation, open spaces, enclosed places, crowds, and
being away from home alone.
Situations are feared or avoided due to thoughts that
escape may be difficult or help may not be available.
Persistent fear of social situations and potential negative
evaluation by others.
Social situations almost always trigger anxiety and are
avoided or endured with extreme fear.
Anxiety or panic symptoms result from substance
intoxication or withdrawal or medication side effects.
Symptoms are neither explained by another anxiety
disorder nor due to delirium.
Anxiety or panic symptoms result directly from
pathophysiological consequences of another medical
condition.
Symptoms are neither explained by another mental
disorder nor due to delirium.
Worries may include perseveration on symptoms, disease
course, scans, treatment outcomes, side effects, role
transitions and loss of functioning.
Difficulty concentrating may interfere with clinical
communication and treatment decision-making.
Blood-injection-injury phobia may cause fainting during
medical procedures, such as blood draws or chemotherapy
infusions.
Claustrophobia may lead to anticipatory anxiety and
avoidance of medical scans (e.g., MRI) or confining
treatments (e.g., radiation therapy).
Panic symptoms (e.g., shortness of breath) may be
misinterpreted as related to cancer and its treatment.
Efforts to prevent breathlessness and autonomic
arousal may result in avoidance of physical activity and
deconditioning.
Fear of leaving home or traveling may interfere with
attending medical appointments.
Additional strain may be placed on social supports to help
with transportation.
Fear of embarrassment or humiliation may inhibit patient
advocating for self and communicating with cancer care
providers.
Cancer-related body disfigurement or changes in physical
appearance due to treatment may worsen social anxiety.
Withdrawal from nicotine, alcohol, sedatives, and opioids
may induce anxiety.
Medications commonly used in cancer care that may
also induce or mimic anxiety include corticosterioids,
antiemetics, interferons, stimulants, antipsychotics, and
anticholinergics.
Common medical conditions in cancer associated
with causing or worsening anxiety symptoms include
uncontrolled pain, hypercalcemia, CNS tumors, seizures,
carcinoid syndrome, heart failure, chronic lung disease,
pulmonary effusions or embolism, and sepsis.

Adapted from Traeger L, Greer JA, Fernandez-Robles C, etal. Evidence-based treatment of anxiety in patients with cancer. J Clin Oncol. 2012;30:11971205.

range) on a psychometrically valid instrument will require a more
comprehensive follow-up assessment. See Table 39.2 for a list of
commonly used measures to screen and assess for anxiety symp-
toms in both self-report and clinician-administered formats.12
Whenever possible, priority should be placed on administering
instruments that have been validated in samples of patients with
cancer, such as the Hospital Anxiety and Depression Scale.13
The purpose of the follow-up assessment is to determine the
etiology, risk factors, nature, and severity of the anxiety symp-
toms, and whether mental health treatment is necessary. ASCO
and others recommend that patients who are at high risk for harm
to self or others and those with psychotic symptoms or delirium
warrant immediate referral to an appropriately trained clinician
(e.g., psychiatrist, psychologist).10,12 Otherwise, the multidisci-
plinary cancer care team shares the responsibility for determining
systematic procedures for conducting follow-up assessments and
referral to mental health professionals as clinically indicated.11
Clinicians would also want to consider the disease, treatment,
substance-related, and psychosocial factors that may be contribut-
ing to the presentation of anxiety symptoms. Finally, assessments
should also include an evaluation of adherence to treatments (for
both cancer and emotional distress) given the increased potential
for patients with anxiety to avoid following through with recom-
mended care.
 Chapter39 anxiety disorders 299

Table39.2 Commonly Used Assessments of Anxiety

Assessment Measure Domain of Assessment Scoring

Self-Report Symptom Measures
Beck Anxiety Inventory (BAI) Physiological symptoms of anxiety 21 items
Scores > 10 (mild) and > 19 (moderate) anxiety
Generalized Anxiety Disorder (GAD)-7 Presence and severity of symptoms of generalized 7 items
anxiety disorder Scores 5 (mild), 10 (moderate), 15 (severe)
Generalized Anxiety Disorder Questionnaire-IV Symptoms of generalized anxiety disorder per criteria 9 items to screen for DSM criteria for GAD
(GAD-Q-IV) of the DSM

Hospital Anxiety & Depression Scale (HADS)
Penn State Worry Questionnaire (PSWQ)
Spielberger State-Trait Anxiety Inventory (STAI)
Clinician Administered Measures
Hamilton Anxiety Rating Scale (HAM-A)
Mini-International Neuropsychiatric Interview
(MINI)
Structured Clinical Interview for DSM Disorders
(SCID)
Anxiety and depression symptoms in medical
patients, with less emphasis on physiological
symptoms
Severity of pathological worry, which is the key
feature of generalized anxiety disorder
Presence and severity of anxiety symptoms at the
moment (state) as well as generally (trait)
Multi-symptom assessment of the psychic and
somatic components of anxiety
Brief structured clinical interview for psychiatric
disorders per DSM and ICD criteria, including anxiety
disorders
Comprehensive, semi-structured clinical interview for
diagnosing psychiatric disorders per DSM criteria
14 items (7 for anxiety; 7 for depression)
Scores 8 on either subscale (at least mild)
16- and 8-item versions to assess for tendency to
worry excessively
20 items for state and 20 items for trait anxiety
14 items
Scores 17 (mild), 1824 (moderate), 2530
(severe)
Approximately 1530 minutes for administration
Approximately 60120 minutes for administration

Adapted from Andersen BL, Derubeis RJ, Berman BS, etal. Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer:an American Society of Clinical
Oncology guideline adaptation. J Clin Oncol. 2014;32(15):16051619.

TREATMENT OF ANXIETY IN PATIENTS
WITH CANCER
The treatment of anxiety in patients with cancer includes a range
of pharmacologic and psychosocial interventions. Table 39.3 pro-
vides an overview of the different approaches, along with specific
practice considerations for cancer care settings. Although evidence
continues to emerge to support the efficacy of various treatments
for reducing anxiety in patients with cancer, data are limited by the
lack of clinical trials specifying anxiety as a primary outcome, as
well as by the enrollment of patients without clinically significant
anxiety symptoms at baseline.14 Nonetheless, clinicians draw on
the strong evidence base for treating anxiety disorders in the gen-
eral population, along with recommendations from national orga-
nizations such as the National Comprehensive Cancer Network.15
In addition, recent psychosocial intervention studies are including
adaptations of established psychotherapy techniques for alleviat-
ing anxiety symptoms in specific cancer populations.16
Pharmacologic Interventions
The mainstays of pharmacological treatment for anxiety
in patients with cancer include benzodiazepines for acute,
short-term management of symptoms, as well as selective
serotonin reuptake inhibitors (SSRIs) and serotonin norepineph-
rine reuptake inhibitors (SNRIs) for long-term management of
anxiety.9 Benzodiazepines have the benefit of rapid onset of action
and may help with not only anxiety and panic but also insomnia
and chemotherapy-related nausea. Additionally, these medica-
tions are commonly administered to patients who are terminally
ill. However, safety concerns including sedation, risk of falling,
mental status changes (e.g., memory problems, delirium), poten-
tial for dependency, interaction with alcohol, and possibility for
paradoxical reactions in the elderly limit their use for longer-term
treatment. Choice of a particular benzodiazepine may depend on
considerations such as route of administration (e.g., oral versus
parenteral), half-life (e.g., clonazepam is longer acting than alpra-
zolam), and effects on patients with impaired hepatic function
(e.g., lorazepam or oxazepam preferred). Clinical trials regarding
the efficacy of benzodiazepines for anxiety in patients with cancer
are limited, dating back to the early 1990s and generally demon-
strating positive effects.9
As first-line treatments for most anxiety disorders, SSRIs and
SNRIs comprise the other classes of medications that clinicians
most commonly prescribe in cancer care settings. Advantages of
these medications include favorable safety and side-effect profiles
as well as benefits for treating comorbid depression. Although
Table39.3 Treatments for Anxiety in Patients with Cancer
Treatment
Pharmacologic Interventions
Benzodiazepines
Selective Serotonin Reuptake
Inhibitors (SSRIs) and Serotonin-
Norepinephrine Reuptake Inhibitors
(SNRIs)
Other Medications for Anxiety
Psychosocial Interventions
Educational Approaches
Cognitive-Behavioral Approaches
Mind-Body Approaches
Supportive Therapy Approaches
Complementary and Alternative
Medicine Approaches
Description
Benzodiazepines (e.g., lorazepam, clonazepam, and
alprazolam) are commonly used for acute anxiety in
patients with cancer.
Medications are fast-acting with short half-life and
potential for dependence.
SSRIs and SNRIs are first-line treatment for anxiety
disorders in the general population.
Commonly prescribed SSRIs include citalopram,
escitalopram, fluoxetine, paroxetine, and sertraline; SNRIs
include venlafaxine, desvenlafaxine, and duloxetine.
SSRIs and SNRIs are preferable for long-term treatment
ofanxiety as they have advantageous safety and
side-effect profiles.
Tricyclic antidepressants (TCAs), such as imipramine
anddesipramine, are also used for anxiety but have risk
forsignificant toxicity and overdose.
Mirtazepine is a tetracyclic antidepressant with effects
onboth serotonin and norepinephrine levels.
Buspirone is a non-benzodiazepine anxiolytic and partial
serotonin receptor agonist.
Atypical antipsychotic medications (e.g., olanzapine
andquetiapine) have been used in low doses to treat
anxiety.
Oral education (e.g., provided by nurse, support staff,
resource specialist or navigator, either in person or
remotely)
Written or visual material (pamphlets, video, electronic
tools)
Cognitive-behavioral therapy (CBT)
Systematic desensitization
Stress management and relaxation
Mindfulness-based therapy
Physical exercise (e.g., yoga)
Hypnosis
Supportive-expressive therapy
Supportive counseling
Acupuncture
Massage/aromatherapy
Creative art therapies (e.g., music, visual arts)
Clinical Practice and Cancer-Specific Considerations
Effective for short-term treatment of anxiety, insomnia,
and chemotherapy-related nausea (including both
anticipatory and post-infusion nausea).
Safety considerations include risk of falls and delirium,
especially in elderly patients, as well as sedation,
addiction, and respiratory suppression.
SSRIs should be chosen to limit drugdrug interactions
with chemotherapy (e.g., fluoxetine and paroxetine
affect metabolism of tamoxifen) and proton-pump
inhibitors, which are commonly used in cancer care (e.g.,
omeprazole may increase serum levels of citalopram,
potentially causing cardiac dysrhythmias).
SSRI and SNRI onset of action may require more than 2
weeks. Most common side effect is GI distress.
TCAs must be used with caution, especially in the
elderly, because of anticholinergic effects such as mental
status changes and constipation.
Mirtazepine not only alleviates anxiety but also may
help patients with poor appetite and insomnia.
Buspirone is well tolerated but delayed onset of action
limits its usefulness in patients with cancer.
Although antipsychotics are not FDA approved for
anxiety, clinicians at times use them for anxious patients,
especially those at risk for delirium.
Educational interventions help reduce uncertainty by
orienting patients to care and providing information
regarding diagnosis, treatments, potential side effects,
and resources for support, etc.
CBT approaches have the strongest evidence for treating
anxiety and cancer-related specific phobias.
Systematic desensitization and stress management and
also help reduce chemotherapy side effects (e.g., ANV).
Mindfulness may be especially relevant for coping with
cancer-related fears about the future (e.g., recurrence,
disease progression, and death).
Hypnosis may also be an adjunctive treatment during
painful and anxiety-provoking medical procedures.
Often delivered in group format, supportive-expressive
therapies offer opportunities to solicit peer support and
explore existential themes.
May be especially helpful for patients with advanced
cancer.
Acupuncture has strong evidence for anticipatory
nausea and vomiting but limited data for anxiety
treatment.
Massage has short-term anxiolytic benefits for patients
receiving care.
Creative art therapies may help support participation
in pleasurable activities, reduce anxiety, and promote
meaning and emotional expression.
Acupuncture, massage, and creative art therapies may
be used with severely ill patients.

generally well tolerated, side effects may include gastrointestinal
distress and sexual dysfunction. Because there is a delay in clinical
effects of the medications (e.g., approximately 26 weeks), clini-
cians may begin treatment with a concomitant use of a benzodiaz-
epine for a short period. As noted in Table39.3, clinicians should
be aware of potential drugdrug interactions when selecting a
particular SSRI for patients receiving chemotherapy or endocrine
therapy (e.g., fluoxetine may decrease serum levels of tamoxi-
fen).17 Despite lack of extensive evidence from placebo-controlled
trials targeting anxiety in samples of patients with cancer, these
medications nonetheless remain the standard of care.
Clinicians at times also prescribe other psychotropic agents for
the management of anxiety symptoms in oncology settings, often
selecting medications that may help with specific cancer-related
concerns. For example, mirtazapine, a tetracyclic antidepressant,
may not only reduce symptoms of anxiety but also improve appe-
tite and quality of sleep. Additionally, although not FDA-approved
to treat anxiety disorders, atypical antipsychotics (e.g., olanzap-
ine) at low doses may be useful for anxiety symptoms in patients
who have dementia or are at risk for delirium. When choosing
an antipsychotic agent, clinicians would want to note drugdrug
interactions with common medications in cancer care (e.g., dexa-
methasone) and other potential complications for this population.
For example, some atypical drugs (e.g., olanzapine and quetiap-
ine) may decrease the seizure threshold and thus pose particular
risks in patients with CNS disease. Of note, while some evidence
exists for the benefits of mirtazapine, no clinical trials have been
conducted to test the safety and efficacy of atypical antipsychotic
medications for anxiety in patients with cancer.9,17
Psychosocial Interventions
Psychosocial interventions for anxiety in patients with cancer are
quite diverse and may include educational, cognitive-behavioral,
mind-body, supportive, and complementary approaches (see
Table 39.3). Choice of psychosocial intervention often depends
on patient preference, severity of anxiety symptoms, availability
of resources, and known evidence. Although numerous studies
have been published on psychosocial interventions for patients
with cancer, they vary with respect to target population, meth-
odology, timing of administration, and outcomes. Unfortunately,
few high-quality investigations have included samples of patients
with heightened baseline anxiety or tested interventions against
control conditions to evaluate the effects on anxiety symptoms or
disorders as the primary outcome.14
Educational Approaches
Educational interventions range from comprehensive psycho-
educational programs (e.g., health education, coping skills
training, support, etc.) to low-intensity, brief orientation, or
information-only programs. These interventions aim to allevi-
ate anxiety by helping patients gain new knowledge and reduce
uncertainty about cancer and its treatment. The administration
(by nurse, counselor, navigator, etc.), delivery method (in-person,
telephone, print material, video, etc.), and timing (at diagnosis,
during clinical transitions) of educational interventions vary by
target population and clinic setting. A recent meta-analysis of
psycho-oncologic interventions showed that psychoeducation
had a small, but statistically significant, effect on anxiety, whereas
information-only programs had no effect.18
Chapter39 anxiety disorders 301
Cognitive-Behavioral Approaches
Cognitive-behavioral interventions for patients with anxiety and
cancer include cognitive-therapy, exposure-based techniques,
stress management and relaxation training, and systematic desen-
sitization. Treatment is goal-oriented and includes practice and
rehearsal of skills over time both in and outside session.9
Although cognitive-behavioral therapy (CBT) is a first-line
treatment for anxiety disorders, several aspects of the approach
require tailoring to the needs of patients with cancer. Specifically,
traditional CBT focuses on helping patients identify and reframe
in a more adaptive way their irrational, automatic thoughts that
lead to or worsen anxiety. For example, a therapist may help a
breast cancer survivor who is misinterpreting benign back pain as
cancer recurrence to examine the evidence for her beliefs. While
such cognitive therapy techniques are quite useful, at times they
may be invalidating for patients with cancer, especially those with
advanced disease, who suffer from realistic worry about loss of
functioning, progressive disease, and impending death. More
recently, clinical investigators have been developing and test-
ing approaches for modifying CBT that account for the genuine,
albeit intrusive, cancer-related worries. Such approaches incor-
porate information gathering to clarify the extent to which fears
are realistic and then employ strategies focused on either taking
action or enhancing acceptance and toleration of distress, as clini-
cally indicated.16,19
Other elements of CBT, such as guided exposure and system-
atic desensitization, help patients incrementally face cues that
trigger anxiety while developing more adaptive coping responses.
These interventions may take place either through repeated visu-
alization (imaginal) or in real life, where the person is gradu-
ally exposed to the trigger of anxiety (in vivo). The goal is to help
patients habituate over time to the anxiety trigger (e.g., a confin-
ing MRI machine) or to facilitate counter-conditioning by pairing
the feared stimulus with relaxation techniques. Guided exposure
and systematic desensitization have demonstrated good results for
treating specific phobias, such as blood-injection-injury phobias,
as well as anticipatory nausea and vomiting.20,21
Relaxation training involves focused attention on a repetitive
word, phrase, action, or image to induce a relaxed state. Common
techniques include slow diaphragmatic breathing, systematic
tensing and releasing of different muscles (progressive muscle
relaxation), and guided imagery, among others. Often, clinicians
provide patients with accompanying written material and audio
recordings of the exercises for home practice. Given the strong
association between anxiety and cancer-related symptoms like
pain, nausea, and breathlessness, relaxation training helps reduce
general bodily stress, improve immune functioning, and enhance
coping with symptoms and side effects of treatment. A recent
meta-analysis of psycho-oncologic interventions showed that
relaxation training had a significant, moderate effect on anxiety
in the short term (< 6months) for patients with cancer.18
Mind-Body Approaches
Mindfulness-based therapy has gained increased popularity over the
last decade. Derived from Eastern meditation practices, the treat-
ment focuses on teaching patients how to focus their thoughts on the
experience of the present moment in a nonjudgmental manner. Such
an approach has particular relevance for people with cancer, who
302 Section VII psychiatric disorders
often experience future-oriented worries and anticipatory anxiety.
Arecent meta-analysis supported the benefits of mindfulness-based
therapy for treating anxiety in patients with cancer.22
Other mind-body approaches include exercise and hypnosis.
Exercise interventions vary considerably for patients with cancer,
ranging from strength and resistance training to yoga and tai chi.
Systematic reviews suggest that exercise interventions may help
reduce anxiety for certain subgroups, such as those with breast can-
cer in active treatment, as well as individuals who are post-treatment
survivors.23,24 Finally, hypnosis is a therapeutic intervention in
which a hypnotist helps a consenting patient by providing sug-
gestions for positive changes in perception, thoughts, mood, or
behavior. Within cancer care, studies show that hypnosis is a useful
adjunctive treatment to reduce pain and anxiety during diagnostic
and invasive procedures, such as excisional breast biopsies.25
Supportive Therapy Approaches
Often delivered in group format, supportive-expressive psycho-
therapy is a non-directive intervention designed to help patients
obtain social support and process their cancer-related experi-
ences, including the emotional sequelae of the disease and exis-
tential concerns. Clinical investigators have largely studied the use
of this therapy in samples of patients with advanced disease, such
as metastatic breast cancer.26 Alternatively, supportive counseling
interventions often include patient education as well as emotional
support, which various providers (therapist, medical provider,
nurses, and community volunteers) deliver. Results from clinical
trials are mixed as to the benefit of these approaches for anxiety in
patients with cancer; further work is needed.
Complementary and Alternative Medicine Approaches
Increasingly, cancer centers are offering acupuncture, along with
other forms of complementary and alternative medicine services.
For example, clinicians may refer patients for acupuncture to help
with chemotherapy-induced nausea and vomiting, which avail-
able evidence supports as an adjunctive treatment. However, data
from mostly non-blinded studies are less convincing for treatment
of anxiety and stress management.27 Finally, massage and creative
art therapies (e.g., art therapy, music, dance, writing, etc.) appear
to have immediate, short-term impact on patient anxiety during
active treatment but not at follow-up.2830 One clear benefit of the
complementary approaches is that patients who are more severely
ill can utilize these interventions.
CLINICAL IMPLICATIONS
ANDCONCLUSIONS
Anxiety is one of the most common forms of psychological dis-
tress that patients will experience throughout the cancer care
trajectory. The goal of intervention is not to eliminate anxiety
entirely, as it functions to motivate and facilitate self-preservation.
However, extreme anxiety symptoms may lead to worse quality
of life, avoidance behaviors, and complications with treatment.
Therefore, in sharing the responsibility for developing efficient
methods for the assessment and treatment of patient anxiety, the
cancer care team would want to undertake the following:
Screen for anxiety at multiple time points from diagnosis
onward, using validated measures (e.g., GAD-7), with systematic
procedures for interpreting results and referring to appropriate
mental health clinicians for patients with elevated symptoms.
Conduct follow-up assessment that incorporates a biopsycho-
social conceptualization, considering the overlap of anxiety
symptoms with the effects of disease, cancer treatment, sub-
stance use, and psychosocial stressors.
Provide access to first-line pharmacological treatments for
anxiety in patients with cancer including benzodiazepines (for
acute symptoms) and SSRIs/SNRIs (for long-term treatment).
Utilize cognitive-behavioral interventions, which have the
strongest evidence for treating anxiety disorders. Published
treatment manuals are available for use in clinic settings.
It is important to note that the different pharmacological and
psychosocial interventions for anxiety may also have beneficial
impact on other cancer-related symptoms and side effects such
as pain, nausea, and vomiting. Ideally, the patient and multidis-
ciplinary team will work together to develop a patient-centered
approach for managing anxiety, thereby improving quality of life
as well as participation in cancer care.
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 CHAPTER40
Delirium
Yesne Alici, Alan T.Bates, and William S.Breitbart
INTRODUCTION
Delirium is a common and often serious neuropsychiatric com-
plication in the management of cancer patients, characterized
by abrupt onset of disturbance in awareness, attention, cogni-
tion, and perception that fluctuates over the course of the day.
Delirium is a medical emergency that needs to be prevented,
identified, and treated vigorously. Delirium is associated with
increased morbidity and mortality13 and increased length of hos-
pitalization,4,5 causing distress in patients, family members, and
staff.610 Delirium is a sign of significant physiologic disturbance,
usually involving multiple medical etiologies, such as infection,
organ failure, and medication adverse effects.1115 Delirium can
interfere with the recognition and control of other physical and
psychological symptoms, such as pain.1618 Unfortunately, delir-
ium is often under-recognized or misdiagnosed19 and inappropri-
ately treated or untreated in the medical setting. Clinicians who
care for patients with cancer must be able to diagnose delirium
accurately, to undertake appropriate assessment of etiologies,
and to understand the benefits and risks of pharmacologic and
non-pharmacologic interventions currently available.
EPIDEMIOLOGY
Delirium is one of the most prevalent neuropsychiatric disorders
in inpatient settings. The reported prevalence and incidence of
delirium vary widely in the medical literature. This is due to the
diverse and complex nature of delirium and the heterogeneity
of sample populations. Many predisposing factors influence the
prevalence and incidence of delirium in the medically ill, result-
ing in disparate estimates depending on patient characteristics,
setting of care, and the assessment scale used.10 The prevalence of
delirium at hospital admission ranges from 14% to 24%, and the
incidence of delirium during hospitalization ranges from 6% to
56% among general hospital populations.10 Old age is a well-known
risk factor for the development of delirium, likely associated
with increasing severity of medical illness, dementia, and physi-
cal frailty.10 The community data from the Eastern Baltimore
Mental Health survey suggested a low prevalence of delirium in
younger populations, with a significant increase associated with
advancing age. The prevalence was 0.4% in patients over the age
of 18, 1.1% in patients over the age of 55, and 13.6% in patients
over the age of 85.20 Postoperative patients, cancer patients, and
acquired immunodeficiency syndrome (AIDS) patients are also
at greater risk for delirium.2123 Delirium occurs in up to 51% of
postoperative patients.10 Approximately 30%40% of medically
hospitalized AIDS patients develop delirium, and as many as
65%80% develop some type of organic mental disorder.10 Massie
and coworkers found delirium in 25% of 334 hospitalized can-
cer patients evaluated in psychiatric consultation and in 85% of
terminal cancer patients.21 Advanced or severe illness involving
multiorgan systems increases the risk of developing delirium. The
highest prevalence and incidence of delirium are reported in hos-
pices with terminally ill patients.24 Pereira and coworkers found
the prevalence of cognitive impairment among cancer inpatients
to be 44%; the prevalence increased to 62.1% in the terminally
ill. 22 Prospective studies conducted in inpatient palliative care
units have found an occurrence rate of delirium ranging from
13% to 42% on admission,15,23,2527 and incident delirium devel-
oping during admission in 26%62%.12,25,26 In a cohort of cancer
patients, Lawlor etal. found delirium was present for at least six
hours before death in 88% of patients,12 and a recent review found
incidence of delirium to range from 59% to 88% in the weeks or
hours preceding death in studies of palliative care inpatients.25
The same review found an overall incidence range for delirium
in inpatient palliative care settings of 3%45%, with hypoactive
delirium being the more prevalent subtype (68%86%).
PATHOPHYSIOLOGY
As reflected by its diverse phenomenology, delirium is a dysfunc-
tion of multiple regions of the brain, a global cerebral dysfunction
characterized by concurrent disturbances of level of conscious-
ness, attention, perception, cognition, psychomotor behavior,
mood, and sleep-wake cycle. Fluctuations of these symptoms, as
well as abrupt onset of such disturbances, are other critical fea-
tures of delirium.28,29 Delirium is conceptualized as a reversible
process, as opposed to dementia. Reversibility is often possible
even in patients with advanced cancer; however, irreversible or
persistent delirium has been described in the last days and among
elderly patients.12,14,30,31 Current literature on the pathophysiol-
ogy of delirium is limited; however, study of the pathophysiology
of delirium is vital to our understanding of the phenomenology,
prognosis, treatment, and prevention of delirium, and there are
recent thorough reviews of what is known.32
Delirium is a syndrome of generalized dysfunction in higher
cortical cerebral processes. 33 Electroencephalogram (EEG)
studies in delirious patients demonstrate diffuse slowing in the

dominant posterior rhythm.34 Functional brain imaging reveals
general cortical hypofunction, which normalizes with effective
treatment, 35,36 as well as functional disconnectivity between
brain areas that would otherwise coordinate their activity as
parts of networks achieving particular cognitive tasks. 37 At the
subcortical level, both increased and decreased activity have been
described for the thalamus and basal ganglia. 38 Despite many
different etiologies, symptoms of delirium are largely stereotypi-
cal, with a set of core symptoms. It appears that this diversity of
physiological disturbances translates into a common clinical
expression that may relate to dysfunction of a final common neu-
roanatomical and/or neurochemical pathway.39 Based on brain
imaging and lesion studies, investigators have postulated that the
final common pathway involves the prefrontal cortex, posterior
parietal cortex, temporo-occipital cortex, anteromedial thalamus,
and right basal ganglia, with an imbalance in the neurotransmit-
ters acetylcholine and dopamine (DA).3943
Many neurotransmitter systems, including the serotonergic, nor-
adrenergic, opiatergic, glutamatergic, and histaminergic systems,
may contribute to delirium as a syndrome.3944 The most predomi-
nant evidence implies an underactivity of the cholinergic system
as the final common pathway.3942,45 The cholinergic hypothesis
is not separable from DA, as these two neurotransmitters interact
closely and usually reciprocally in the brain. The acetylcholine-DA
hypothesis explains the efficacy of DA antagonists in the treat-
ment of delirium by regulating the imbalance between cholinergic
and dopaminergic activity while the underlying etiology is being
treated. Increased serotonergic activity and decreased availability of
the serotonin precursor tryptophan have both been associated with
delirium. The pathogenesis of delirium through serotonergic abnor-
malities may be related to the interaction of serotonergic, choliner-
gic, and dopaminergic systems, resulting in an acetylcholine-DA
imbalance. The association of delirium with abnormalities in nor-
adrenergic transmission is less clear. Glutamatergic hyperactivity
can also contribute to delirium caused by hypoxia and quinolone
antibiotics. Gamma-amino butyric acid (GABA) dysregulation has
been implicated in alcohol withdrawal delirium with decreased
GABA activity. Opioidergic transmission may cause delirium
through interference at the anterior cingulate gyrus, which has
been implicated in the pathophysiology of delirium.46
In addition to the prevailing theories focusing on particular
neurotransmitter systems or gross cerebral hypoactivity, slowing,
and functional disconnectivity, other pathophysiological mecha-
nisms have been proposed.32,47 Studies such as that by de Rooij
etal.48 indicate that neuroinflammatory processes might be cen-
tral to delirium. They found increased cytokine levels in patients
with delirium, even after controlling for infection, age, and cogni-
tive impairment. There are also findings suggesting that deficient
oxygenation and oxidative stress are key predisposing features
in delirium.49 Another line of work suggests that disruption of
circadian rhythms is an early disturbance in the cascade of cere-
bral abnormalities that follows in delirium, 50,51 and findings that
melatonin52 and ramelteon53 may be protective against delirium
provide converging evidence. The common observation of new or
exacerbated delirium following exogenous glucocorticoid admin-
istration indicates a potentially powerful role for neuroendocrine
dysfunction in delirium as well. There are likely a number of fre-
quently overlapping pathophysiological routes to the syndrome
we observe as delirium.
Chapter40 delirium 305
CLINICAL FEATURES
The clinical features of delirium are numerous and include a vari-
ety of neuropsychiatric symptoms (Box 40.1).24,29 The main features
of delirium include prodromal symptoms (e.g., restlessness, anxi-
ety, sleep disturbances, and irritability); rapidly fluctuating course;
abrupt onset of symptoms; reduced attention (e.g., distractibility);
altered level of arousal; increased or decreased psychomotor activity;
disturbance of sleep-wake cycle; affective symptoms (e.g., emotional
lability, depressed mood, anger, or euphoria); perceptual distur-
bances (e.g., misperceptions, illusions, and hallucinations); delusions;
disorganized thinking and incoherent speech; disorientation; and
memory impairment. Language disturbance may be evident as dys-
nomia (i.e., the impaired ability to name objects) or dysgraphia (i.e.,
the impaired ability to write). In some cases, speech is rambling and
irrelevant, in others pressured and incoherent.29 Neurologic abnor-
malities may include motor abnormalities such as tremor, asterixis,
myoclonus, frontal release signs, and changes in muscle tone.
Phenomenology studies have shown cognitive impairment to
be common, with disorientation occurring in 78%100%, atten-
tion deficits in 62%100%, memory deficits in 62%90%, and
diffuse cognitive deficits in 77%. 54 Disturbance of conscious-
ness was recorded in 65%100% of patients with delirium. In
addition, disorganized thinking was found in 95%, language
abnormalities in 47%93%, and sleep-wake cycle distur-
bances in 49%96%. 54 A phenomenology study by Meagher
and colleagues 55 examining 100 palliative care patients shows
sleep-wake cycle abnormalities (97%), inattention (97%),
long-term memory impairment (89%), reduced visuospatial
ability (87%), short-term memory impairment (88%), disorien-
tation (76%), motor agitation (62%), motor retardation (62%),
language disturbance (57%), and perceptual abnormalities
(50%) to be common features.
Box 40.1 Common Clinical Features of Delirium
Disturbance in level of alertness (consciousness) and arousal
Attention disturbance
Rapidly fluctuating course and abrupt onset of symptoms
Increased or decreased psychomotor activity
Disturbance of sleep-wake cycle
Mood symptoms
Perceptual disturbances
Disorganized thinking
Incoherent speech
Disorientation and memory impairment
Other cognitive impairments (e.g., dysgraphia, constructional
apraxia, dysnomia)
Asterixis, myoclonus, tremor, frontal release signs, changes in
muscle tone
Adapted from Gagnon P, Allard P, Masse B, DeSerres M. Delirium
in terminal cancer:a prospective study using daily screening, early
diagnosis, and continuous monitoring. J Pain Symptom Manag.
2000Jun;19(6):412426.
306 Section VII psychiatric disorders
There was considerable debate about what changes should
be made in the diagnostic criteria in moving from the fourth
edition of the Diagnostic and Statistical Manual of Mental
Disorders 56 to the current fifth edition (DSM-5).28 In the end,
the differences between the two editions are relatively minor,
with the latest edition focusing on disturbance in awareness
and attention, rather than on the term consciousness. It is also
more explicit in differentiating delirium from coma. According
to DSM-5, the essential features of delirium are disrupted atten-
tion (e.g. difficulty directing, focusing, sustaining, or shifting
attention) and awareness (i.e., reduced orientation to the envi-
ronment); a change from baseline that develops over hours to
days and fluctuates within a day; additional cognitive problems
(e.g., in memory, orientation, language, visuospatial ability, or
perception); the condition is not better explained by another
neurocognitive disorder and is not associated with a state of
severely reduced arousal such as coma; history, physical exam,
or lab findings suggest that the patients mental state is a direct
physiological result of another medical condition, substance
intoxication or withdrawal, exposure to a toxin, or multiple eti-
ological factors. Abrupt onset and fluctuation of the signs and
symptoms over 24 hours are integral parts of the diagnostic cri-
teria. DSM-5 does not place diagnostic emphasis on disturbance
of sleep-wake cycle and disturbances in psychomotor activity.
On the basis of psychomotor behavior and arousal levels, two
subtypes of delirium were described by Lipowski. The subtypes
included the hyperactive (or agitated, or hyperalert) subtype and
the hypoactive (or lethargic, hypoalert, or hypoaroused) subtype.
Amixed subtype has since been proposed with alternating fea-
tures of each.29 The hypoactive subtype is characterized by psy-
chomotor retardation, lethargy, sedation, and reduced awareness
of surroundings.15,23,55,57,58 Hypoactive delirium is often mis-
taken for depression, and is difficult to differentiate from sedation
due to opioids, or obtundation in the last days of life.59 The hyper-
active subtype is commonly characterized by restlessness, agita-
tion, hypervigilance, hallucinations, and delusions.23,55,57,58 The
hyperactive delirium is more easily recognized by clinicians and
is more likely to be referred to psychiatrists, compared to patients
with other subtypes of delirium.60
A meta-analysis of delirium subtypes suggests that the mean
prevalence of hypoactive delirium is 48% (ranging between 15%
and 71%).23 The prevalence of hyperactive delirium ranges from
13% to 46%.23 Asystematic review of delirium subtypes by de Rooij
etal. identified 10 studies61 conducted in a variety of different set-
tings, predominantly among older medically ill patients. Owing to
lack of a standardized classification method, and different results
obtained, it was difficult to draw any conclusions regarding the
frequency of the three motoric subtypes of delirium, and their
association with specific prognoses, etiologic factors, and thera-
peutic consequences. Peterson et al. studied delirium subtypes
in patients admitted to a medical intensive care unit (ICU) and
found that those aged 65 and older were almost twice as likely to
have hypoactive delirium as younger patients.62 In the palliative
care setting, hypoactive delirium is most common. Spiller and
Keen found a delirium prevalence of 29% in 100 acute admissions
to a hospice center; 86% of these had the hypoactive subtype.15
Both hypoactive and hyperactive subtypes of delirium have
been shown to cause distress in patients, family members, cli-
nicians, and staff.69,63,64 In a study of 101 terminally ill cancer
patients, Breitbart et al.8 found that 54% of patients recalled their
delirium experience after recovering from the episode. Patients
with hypoactive delirium (i.e., with few outward manifestations
of discomfort or distress) were just as distressed as patients with
hyperactive delirium. Studies suggest that the experience of car-
ing for a delirious family member or a patient is perhaps even
more of a distressing experience than the experience of the pati
ent.7,8,64 In a study of delirium-related caregiver distress, Breitbart
et al.8 found that caregivers, including spouses, family members,
and staff, experienced significant levels of distress. Predictors of
spouse distress included the patients Karnofsky Performance
Status (the lower the Karnofsky, the worse the spouse distress), as
well as the presence of hyperactive delirium, and delirium related
to brain metastases.8 Predictors of staff distress included delirium
severity, the presence of perceptual disturbances, paranoid delu-
sions, and sleep-wake cycle disturbance. A more recent examina-
tion of the same questions by Bruera et al.7 replicated the finding
of even greater distress in family caregivers compared to patients,
but, in contrast to the earlier study, found quite low levels of delir-
ium-related distress in nurses and palliative care specialists.
There is evidence suggesting that the subtypes of delirium may
be related to different causes, and may have different treatment
responses.5759,65,66 Hypoactive delirium has generally been found
to occur due to hypoxia, metabolic disturbances, and hepatic
encephalopathies.23,58,59,65 Hyperactive delirium is correlated
with alcohol and drug withdrawal, drug intoxication, or medi-
cation adverse effects.23,58,59,65,66 Arandomized controlled trial
of haloperidol and chlorpromazine found that both medications
were equally effective in hypoactive and hyperactive subtypes of
delirium.66 However, in an open-label trial, the hypoactive sub-
type was associated with poorer treatment response to olanzap-
ine.57 The hypoactive subtype of delirium is also associated with
higher risk of mortality.31,65
INTERFERENCE OF DELIRIUM WITH
ASSESSMENT AND MANAGEMENT OF PAIN
It is well recognized that success in the treatment of cancer pain is
highly dependent on proper assessment. However, the assessment
of pain intensity becomes very difficult in patients with delirium.
Delirium can interfere dramatically with the recognition and con-
trol of pain, and other physical and psychological symptoms in
advanced cancer patients, particularly in the terminally ill.16,17
Patients with severe pain are particularly at risk of delirium due
to their high opioid requirements.67 Due to reversal of sleep-wake
cycle, patients with delirium use a significantly greater number
of breakthrough doses of opioids at night compared to patients
without delirium.18 In turn, agitation may be misinterpreted as
uncontrolled pain, resulting in inappropriate escalation of opioids,
potentially exacerbating delirium further.17 Accurate pain report-
ing depends on the ability to perceive the pain normally and to
communicate the experience appropriately. Delirium may impair
the ability to both perceive and report pain accurately. Astudy of
terminally ill hospice patients 68 found that their ability to com-
municate was frequently impaired, with the degree of impairment
related to delirium and opioid dosage. Patients ability to manage
their own pain through patient-controlled analgesia should also
be considered carefully in advanced cancer.69 Efforts have been
made to improve assessment of pain in nonverbal palliative care

patients,70 and some pain management strategies show promise
of reducing pain without increasing risk of delirium. Rotation
to methadone from other opioids has the potential to attenuate
pain while also improving mental status in inpatients71 and out-
patients.72 Arecent study by Arai etal.73 demonstrating reduced
pain and reduced incidence of terminal delirium with neurolytic
celiac plexus block in patients with pancreatic cancer is a good
example of non-opioid pain management strategies that reduce
risk for delirium.
DIFFERENTIAL DIAGNOSIS
Many of the clinical features of delirium can also be associated
with other psychiatric disorders, such as depression, mania, psy-
chosis, and dementia, making diagnosis more challenging. Wada
etal.19 found that over a third of 60 delirious patients seen by their
psychiatry consult service had been misdiagnosed by referring
oncologists. Because of deliriums fluctuating course, there can
also be disagreement between clinicians evaluating the patient at
different times of day about whether there is any abnormality at
all. Assessments that differ widely between time points within the
same day are suggestive of delirium. When delirium presents with
mood symptoms such as depression, apathy, euphoria, or irritabil-
ity, these symptoms are not uncommonly attributed to depression
or mania, especially in patients with a past psychiatric or family
history of these conditions.29 The hypoactive subtype of delir-
ium is commonly misdiagnosed as depression.24,61,74 Symptoms
of major depression, including decreased psychomotor activity,
insomnia, reduced ability to concentrate, depressed mood, and
even suicidal ideation, can overlap with symptoms of delirium. In
distinguishing delirium from depression, particularly in the con-
text of advanced cancer, an evaluation of the onset and temporal
sequencing of depressive and cognitive symptoms is particularly
helpful. It is important to note that the degree of cognitive impair-
ment is much more pronounced in delirium than in depression,
with a more abrupt onset. Also, in delirium the characteristic
disturbance in level of arousal is present, while it is usually not a
feature of depression. Similarly, a manic episode may share some
features of delirium, particularly a hyperactive or mixed subtype
of delirium. Again, the temporal onset and course of symptoms,
the presence of a disturbance of level of arousal as well as cog-
nition, and the identification of a presumed medical etiology for
delirium are helpful in differentiating these disorders. Symptoms
such as severe anxiety and autonomic hyperactivity can lead the
clinician to an erroneous diagnosis of panic disorder. Delirium
that is characterized by vivid hallucinations and delusions must
be distinguished from a variety of psychotic disorders such as
schizophrenia. Delusions in delirium tend to be poorly organized
and of abrupt onset, and hallucinations are predominantly visual
or tactile, rather than auditory, as is typical of schizophrenia.
Acute onset, fluctuating course, disturbances of cognition, and
consciousness, in the presence of one or more etiologic causes, are
characteristic in the diagnosis of delirium.29
The most challenging differential diagnostic issue is whether
the patient has delirium, dementia, or a delirium superimposed
on a pre-existing dementia. Both delirium and dementia are dis-
orders of cognition and share common clinical features, such as
disorientation, memory impairment, aphasia, apraxia, agnosia,
and executive dysfunction.29 Impairments in judgment, abstract
Chapter40 delirium 307
thinking, and disturbances in thought process are seen in both
disorders. Delusions and hallucinations can be central features
of certain types of dementia (e.g., Lewy body dementia). It is the
abrupt onset, fluctuating course, and disturbances of conscious-
ness or arousal that differentiate delirium from dementia. 29 The
temporal onset of symptoms in dementia is more insidious and
the course more chronically progressive. In delirium superim-
posed on an underlying dementia, such as in the case of an elderly
patient, an AIDS patient, or a patient with a paraneoplastic syn-
drome, differential diagnosis becomes even more challenging.
Signs of dementia that might otherwise be obvious tend to be
eclipsed by the more acute signs of delirium.75 Delirium, unlike
dementia, is often reversible, although as noted previously, in ter-
minally ill patients, delirium may be irreversible.29 In addition,
there is now growing evidence that delirium may predispose to
dementia, particularly in elderly patients.76
ASSESSMENT OF DELIRIUM
Clinically, the diagnostic gold standard for delirium is the clini-
cians assessment utilizing the DSM-5 criteria, as outlined above.
Several delirium screening and evaluation tools have been devel-
oped to maximize diagnostic precision for clinical and research
purposes and to assess delirium severity.77 Adetailed review of
these assessment tools is available elsewhere.77 Examples of delir-
ium assessment tools used in cancer patients and in palliative
care settings include the Memorial Delirium Assessment Scale
(MDAS),78,79 the Delirium-Rating ScaleRevised 98 (DRS-R-
98), 80 and the Confusion Assessment Method (CAM).81 Each of
these scales has good reliability and validity.
The MDAS is designed to be administered repeatedly within
the same day, to allow for objective measurement of changes
in delirium severity in response to medical changes or clinical
interventions. The MDAS is a 10-item, four-point clinician-rated
scale (possible range:030) designed to quantify the severity of
delirium, validated among hospitalized patients with advanced
cancer and AIDS.78 Items included in the MDAS reflect the diag-
nostic criteria for delirium in the DSM-IV, as well as symptoms
of delirium from earlier or alternative classification systems (e.g.,
DSM-III, DSM-III-R, ICD-9). The MDAS is a good delirium diag-
nostic screening tool as well as a reliable tool for assessing delir-
ium severity among patients with advanced disease. Scale items
assess disturbances in arousal and level of consciousness, as well
as in several areas of cognitive functioning (memory, attention,
orientation, disturbances in thinking) and psychomotor activ-
ity.78 A cutoff score of 13 is diagnostic of delirium. The MDAS
has been revalidated among advanced cancer patients in inpatient
palliative care settings with a sensitivity of 98% and a specificity of
96% at a cutoff score of 7.79
The Delirium-Rating Scale (DRS)82 is a numerical rating scale
that specifically integrates DSM-III-R diagnostic criteria for delir-
ium. DRS-R-98 is the revised version of the DRS and contains
13 severity items and three diagnostic items. 80 The DRS-R-98
is a valid, sensitive, and reliable instrument for rating delirium
severity.80
The CAM is a nine-item delirium diagnostic scale based on the
DSM-III-R criteria for delirium.81 Aunique and helpful feature of
the CAM is that it has been simplified into a diagnostic algorithm
that includes only four items designed for rapid identification
308 Section VII psychiatric disorders
of delirium by non-psychiatrists. However, the sensitivity of the
CAM may be significantly affected by the experience and train-
ing of the user.83 The four-item CAM algorithm requires the pres-
ence of (1)acute onset and fluctuating course, (2)inattention, and
either (3)disorganized thinking or (4)altered level of conscious-
ness. The CAM has been validated in palliative care settings with
a sensitivity of 88% and a specificity of 100% when administered
by well-trained clinicians.84 Ely and colleagues have also extended
use of the CAM to mechanically ventilated patients in the ICU
with the creation of the CAM-ICU.85,86
ETIOLOGIES AND REVERSIBILITY
OFDELIRIUM
Delirium can have multiple potential etiologies (see Box 40.2). In
patients with cancer, delirium can result either from the direct
effects of cancer on the central nervous system (CNS) or from
the indirect CNS effects of the disease or treatments (e.g., medi-
cations, electrolyte imbalance, dehydration, major organ fail-
ure, infection, vascular complications, paraneoplastic syndro
mes).11,12,14,15,29,61,87 The diagnostic workup of delirium should
include an assessment of potentially reversible causes. The clini-
cian should obtain a detailed history from family and staff of the
patients baseline mental status and verify the current fluctuating
mental status. It is important to inquire about alcohol or other
substance use disorders in hospitalized cancer patients to be able
to recognize and treat alcohol or other substance-induced with-
drawal delirium appropriately. 29 Arecent study by Shah etal. 88
of patients undergoing surgery for head and neck cancer report-
ing increased risk of postoperative delirium in patients with
elevated mean corpuscular volume (MCV), a history of being
advised to cut back on alcohol, or without at least of week of
abstinence from alcohol in the past year underscores the impor-
tance of obtaining a thorough substance history in that popu-
lation. A full physical examination should assess for evidence
of sepsis, dehydration, or major organic failure (renal, hepatic,
pulmonary). 30 Medications that could contribute to delirium
should be reviewed and possible medication interactions should
Box 40.2 Etiologies of Delirium in Cancer Patients
Direct effects of cancer on the CNS
Primary CNS tumors
Metastatic brain tumors
Leptomeningeal carcinomatosis
Indirect CNS effects of cancer or treatments
Major organ failure (e.g., pulmonary, renal, hepatic)
Electrolyte imbalance
Medications (including chemotherapeutic agents)
Infection
Hematologic abnormalities
Paraneoplastic syndromes
Abbreviation:CNS=central nervous system.
be carefully considered. Opioid analgesics, benzodiazepines,
and anticholinergic drugs are common causes of delirium, par-
ticularly in the elderly and the terminally ill. 29,87,89 The challenge
of assessing the opioid contribution to an episode of delirium
is often compounded by the presence of many other poten-
tial contributors to cognitive impairment, such as infection,
metabolic disturbance, dehydration, pain, or other medication
effects. Reducing the dose of opioids or switching to another
opioid has been demonstrated to reverse delirium due to opi-
oids. Chemotherapeutic agents known to cause delirium include
methotrexate, fluorouracil, vincristine, vinblastine, bleomy-
cin, bis-chloronitrosourea (BCNU), cis-platinum, ifos-famide,
asparaginase, procarbazine, and gluco-corticosteroids.
A screen of laboratory parameters will allow assessment of the
possible role of metabolic abnormalities, such as hypercalcemia,
and other problems, such as hypoxia or disseminated intravascu-
lar coagulation. In some instances, an EEG (to rule out seizures),
brain imaging studies (to rule out brain metastases, intracranial
bleeding, or ischemia), and lumbar puncture (to rule out lepto-
meningeal carcinomatosis or meningitis) may be appropriate.24,29
There are select times when more specialized laboratory workup
is indicated, such as when anti-NMDA receptor encephalitis or
another paraneoplastic syndrome is suspected.90
When assessing etiologies of delirium, an important challenge
is the clinical differentiation of delirium as either a reversible
complication of cancer or an integral element of the dying pro-
cess in terminally ill patients. The potential utility of a thorough
diagnostic assessment has been demonstrated in patients with
advanced cancer. When diagnostic information points to a likely
etiology, specific therapy may be able to reverse delirium. There
is an ongoing debate as to the appropriate extent of diagnostic
evaluation that should be pursued in a terminally ill patient with
delirium.87,91 When confronted with delirium in terminally ill
patients, the clinician must take a more individualized and judi-
cious approach, consistent with the goals of care.
Bruera et al. reported that an etiology was discovered in
43% of terminally ill patients with delirium, and one-third of
the patients with delirium improved with treatment of the spe-
cific etiologies.92 Lawlor and colleagues explored the etiologic
precipitants and potential reversibility of delirium in advanced
cancer patients admitted to a palliative care unit for symptom
control and found an overall reversibility rate of 49%.12 No dif-
ference was found in reversibility rates for delirium present on
admission and that which developed subsequently. However, a
significant difference existed in the reversibility of initial (56%)
compared to repeated episodes (6%). The median number of pre-
cipitating factors for both reversible and irreversible delirium
was three (range 16). The application of standardized criteria
resulted in a classification of etiologic factors in 78% of episodes
of reversible delirium and 59% of irreversible cases. Reversibility
of delirium was significantly associated with opioids, other psy-
choactive medications, and dehydration. In contrast, irrevers-
ibility of delirium was significantly associated with hypoxic
encephalopathy and metabolic factors related to major organ
failure, including hepatic and renal insufficiency, and refractory
hypercalcemia.12 Ljubisavljevic and Kelly prospectively assessed
the development of delirium in oncology patients, and found a
delirium occurrence rate of 18% (26 out of 145 patients) and a
reversal rate of 84.6% (22 out of 26 patients).13 Morita examined

factors associated with the reversibility of delirium in another
population of advanced cancer patients admitted to hospice.14
This studys overall delirium reversibility rate was 20%, lower
than that reported in prior studies. Patients with delirium had
a 30-day mortality rate of 83% and a 50-day mortality rate of
91%. While reversibility of delirium was significantly associated
with medications (37%) or hypercalcemia (38%), irreversibility
was associated with infections (12%), hepatic failure, hypoxia,
disseminated intravascular coagulation, and dehydration (<
10%). Leonard and colleagues31 found a 27% recovery rate from
delirium among patients in palliative care settings. Patients with
irreversible delirium experienced greater disturbances of sleep
and cognition. Mean time until death was 39.7 (SD, 69.8) days in
patients with reversible delirium (n=33) versus 16.8 (SD, 10.0)
days in patients with irreversible delirium (n=88). 31 In contrast
to the reports listed above, a 2009 study of inpatients with cancer
by Sagawa etal.93 found no association between reversibility and
any particular etiological factor.
In light of several studies on the reversibility of delirium, the
prognosis of patients who develop delirium is defined by the inter-
action of the patients baseline physiologic susceptibility to delir-
ium (e.g., predisposing factors), the precipitating etiologies, and
any response to treatment. If a patients susceptibility or resilience
is modifiable, then targeted interventions may reduce the risk of
delirium upon exposure to a precipitant and enhance the capacity
to respond to treatment. Conversely, if a patients vulnerability is
high and resistant to modification, then exposure to precipitants
enhances the likelihood of developing delirium and may dimin-
ish the probability of a complete restoration of cognitive function.
Agood example of an irreversible risk factor that may contrib-
ute to such a situation is the recent finding by Root etal.94 of an
association between preoperative white matter pathology seen on
magnetic resonance imaging (MRI) and postoperative delirium in
non-small cell lung cancer patients.
MANAGEMENT OF DELIRIUM IN
CANCERPATIENTS
The standard approach to managing delirium in cancer patients,
even in those with advanced disease, includes a search for under-
lying causes, correction of those factors, and management of the
symptoms of delirium.29 Treatment of the symptoms of delirium
should be initiated before, or in concert with, a diagnostic assess-
ment of the etiologies to minimize distress to patients, staff, and
family members. The desired and often achievable outcome is a
patient who is awake, alert, calm, comfortable, cognitively intact,
and communicating coherently with family and staff. In the ter-
minally ill patient who develops delirium in the last days of life,
the management of delirium is unique, presenting a number of
dilemmas, and the desired clinical outcome may be significantly
altered by the dying process.24 The goal of care in the terminally ill
may shift to providing comfort through the judicious use of seda-
tives, even at the expense of alertness.
Non-pharmacological Interventions
Non-pharmacologic and supportive therapies play an essential
role in the treatment of cancer patients with delirium, especially
in patients with terminal delirium.
Chapter40 delirium 309
There is evidence that non-pharmacologic interventions in
non-palliative care settings result in faster improvement of delir-
ium and slower deterioration in cognition. However, these inter-
ventions were not found to have any beneficial effects on mortality
or health-related quality of life when compared with usual care.95
97 Non-pharmacologic interventions used in these studies include
oxygen delivery, fluid and electrolyte administration, ensuring
bowel and bladder function, nutrition, mobilization, pain treat-
ment, frequent orientation, use of visual and hearing aids, and
environmental modifications (e.g., quiet, well-lit room with
familiar objects, a visible clock or calendar) to enhance a sense
of familiarity.24,9597 One-to-one nursing may be necessary for
observation. The use of physical restraints has been identified as
an independent risk factor for delirium persistence at the time of
hospital discharge.95 Physical restraints should be avoided in all
patients with delirium and in all patients at risk for delirium.
Pharmacological Interventions
Non-pharmacologic interventions and supportive measures
alone are often not effective in controlling the symptoms of
delirium. Symptomatic treatment with psychotropic medications
is often essential to control the symptoms of delirium, although
no medications have been approved by the US Food and Drug
Administration (FDA) for the treatment of delirium.
Antipsychotic Medications
American Psychiatric Association (APA) practice guidelines
provide directions for the use of antipsychotics in the treatment
of delirium, 29 and growing evidence supports their use (see
Table40.1).57,66,98105
Haloperidol (a typical antipsychotic) is the gold-standard
medication for treatment of delirium among cancer patients,
due to its efficacy and safety (e.g., few anticholinergic effects,
lack of active metabolites, and availability in different routes of
administration).29 Approximately 0.5%2% of hospitalized can-
cer patients receive haloperidol for symptoms of delirium,106 and
only 17% of terminally ill patients receive any antipsychotic drugs
for agitation or delirium.106 Haloperidol in low doses (13 mg per
day) is usually effective in targeting agitation and psychotic symp-
toms.29 In general, doses of haloperidol need not exceed 20 mg in
a 24-hour period; however, some clinicians advocate higher doses
in selected cases.29 In severe agitation related to delirium, clini-
cians may add lorazepam to haloperidol. This combination may be
more effective in rapidly sedating patients and may help minimize
any extrapyramidal adverse effects of haloperidol.29 However,
there is evidence that benzodiazepines can worsen delirium,66
and switching to a more sedating antipsychotic is another option.
Oral or intravenous (IV) chlorpromazine is considered to be an
effective alternative to haloperidol (with or without lorazepam)
when increased sedation is required, especially in the ICU setting
where close blood pressure monitoring is feasible, and for severe
agitation in terminally ill patients to decrease distress for the
patient, family, and staff. It is important to monitor chlorproma-
zines anticholinergic and hypotensive side effects, particularly in
elderly patients.24,29
In a double-blind, randomized comparison trial (n=30) of halo-
peridol, chlorpromazine, and lorazepam, Breitbart and colleagues66
demonstrated that lorazepam alone, in doses up to 8 mg in a
12-hour period, was ineffective in the treatment of delirium, and in
310 Section VII psychiatric disorders

Table40.1 Antipsychotic Medications in the Treatment of Delirium in Cancer Patients

Medication Dose Range Routes of Administration Side Effects Comments

Typical antipsychotics
Haloperidol 0.52 mg every 212 hr PO, IV, IM, SC Extrapyramidal adverse effects Remains the gold-standard
can occur at higher doses. therapy for delirium.
Monitor QT interval on EKG. May add lorazepam (0.51 mg
every 24 hr) for agitated patients
Chlorpromazine 12.550 mg every 46 hr PO, IV, IM, SC, PR More sedating and May be preferred in agitated
anti-cholinergic compared with patients due to its sedative effect.
haloperidol.
Monitor blood pressure for
hypotension.
Atypical antipsychotics
Olanzapine 2.55 mg every 1224 hr PO, a IM Sedation is the main dose-limiting Older age, pre-existing dementia,
adverse effect in short-term use. and hypoactive subtype of
delirium have been associated
with poor response.
Risperidone 0.251 mg every1224 hr POa Extrapyramidal adverse effects Clinical experience suggests
can occur with doses > 2 mg/day. better results in patients with
Orthostatic hypotension. hypoactive delirium.
Quetiapine 12.5100 mg every 1224 hr PO Sedation, orthostatic Sedating effects may be helpful
hypotension. in patients with sleep-wake cycle
disturbance.
Ziprasidone 1040 mg every 1224 hr PO, IM Monitor QT interval on EKG. Has not been found to be
effective in controlling symptoms
of delirium in ICU settings.
Aripiprazole 530 mg every 24 hr PO, a IM Monitor for akathisia. Evidence is limited to case
reports, case series, and open
label trials.
a Risperidone, olanzapine, and aripiprazole are available in orally disintegrating tablets.

Abbreviations:EKG=electrocardiogram; IM=intramuscular; IV=intravenous; PO=per oral; PR=per rectum; SC=subcutaneous.

fact sometimes worsened it. Both haloperidol and chlorpromazine,
in low doses (approximately 2 mg of haloperidol equivalent per 24
hours) were effective in controlling the symptoms of delirium and
in improving cognitive function in the first 24 hours of treatment.66
Hyperactive and hypoactive subtypes of delirium were equally
responsive to treatment with haloperidol or chlorpromazine.
A Cochrane review on drug therapy for delirium in the termi-
nally ill105 concluded that haloperidol was the most suitable medi-
cation for the treatment of patients with delirium near the end
of life, with chlorpromazine being an acceptable alternative. The
FDA has issued a warning against the risk of QTc prolongation
and torsades de pointes with IV haloperidol; thus monitoring QTc
intervals daily among medically ill patients receiving IV haloperi-
dol has become the standard clinical practice.107
Atypical antipsychotic agents (i.e., risperidone, olanzapine,
quetiapine, ziprasidone, and aripiprazole) are increasingly used in
the treatment of delirium in cancer patients due to decreased risk
of extrapyramidal adverse effects. Several studies have been con-
ducted with atypical antipsychotics, including olanzapine, risper-
idone, quetiapine, and ziprasidone in treatment of delirium.24,108
Acomprehensive review of antipsychotic trials in the treatment of
delirium is available elsewhere.108
In a double-blind comparative delirium intervention study
assessing the efficacy of haloperidol versus risperidone, Han and
Kim demonstrated, in a small sample of 24 oncology patients, that
there was no significant difference in clinical efficacy or response
rate. The mean risperidone dose was 1.02 mg, and the mean halo-
peridol dose was 1.71 mg. MDAS scores improved significantly in
both groups. No significant difference was observed in adverse
effects. However, despite the double-blind design in this study,
authors acknowledged that they were not able to obtain identi-
cal looking tablets of haloperidol and risperidone.100 Arelatively
recent open-label trial by Kishi etal.109 of liquid risperidone in
29 delirious cancer patients (mean age 69)referred to their psy-
chiatric consult service found reduction of delirium severity in
79% of patients, response (defined as at least 25% reduction in
DRS-R-98 severity score) in 48% of patients, and remission in 38%
of patients after seven days. Risperidone has also been compared
to olanzapine in a small (n=32, primarily oncology patients) ran-
domized, single-blind trial by Kim etal.110 They used the DRS-R-
98 to assess change over seven days and reported no difference in
response rates between the two groups.
Breitbart and colleagues published an (n = 82) open trial of
olanzapine for the treatment of delirium in hospitalized patients

with advanced cancer.57 Olanzapine was effective in the treatment
of delirium, resolving delirium in 76% of patients with no inci-
dence of extrapyramidal side effects. Several factors were found
to be significantly associated with poorer response to olanzapine
treatment for delirium, including age over 70, history of dementia,
and hypoactive subtype of delirium. The average starting dose was
in the 2.55 mg range, and patients were given up to 20 mg per day
of olanzapine. Sedation was the most common side effect.
Preliminary work suggests that olanzapine could be given sub-
cutaneously if needed. Elsayem etal.111 demonstrated good toler-
ability of subcutaneous olanzapine in an open-label study of 24
advanced cancer patients with agitated delirium. No injection site
toxicity was observed, but there were four possible systemic adverse
events recorded (severe hypotension, seizure, diabetes insipidus,
and paradoxical agitation). Further work is needed to assess the
safety and efficacy of the subcutaneous route of administration.
A small open-label trial of 12 patients (most with leukemia)
showed good effectiveness and tolerability of quetiapine at an
average dose of 94 mg. Mean time to stabilization was approxi-
mately six days.112
From a prospectively collected database of delirious inpatients
with cancer, Boettger and colleagues113 compared 21 patients who
received aripiprazole with 21 case-matched patients who received
haloperidol. They found no significant differences in effectiveness
between the two medications, and haloperidol caused more extra-
pyramidal side effects.
A Cochrane review comparing the efficacy and the incidence
of adverse effects between haloperidol and atypical antipsychot-
ics concluded that, like haloperidol, selected newer atypical anti-
psychotics (risperidone, olanzapine) were effective in managing
delirium.103 Haloperidol doses greater than 4.5 mg/day were more
likely to result in increased rates of EPS compared with the atypi-
cal antipsychotics, but low-dose haloperidol (i.e., less than 3.5
mg/day) did not result in a greater frequency of extrapyramidal
adverse effects.100,101,103
The APA guidelines29 for treatment of delirium recommend
the use of low-dose haloperidol (i.e., 12 mg PO every 4 hours as
needed, or 0.250.5 mg PO every 4 hours for the elderly) as the
treatment of choice in cases where medications are necessary.
In the light of existing literature, risperidone may be used in the
treatment of delirium, starting at doses ranging from 0.25 to 1 mg
and titrated up as necessary, with particular attention to the risks
of EPS, orthostatic hypotension, and sedation at higher doses.
Olanzapine can be started between 2.5 and 5 mg nightly and
titrated up, with sedation being the major limiting factor, which
may be favorable in the treatment of hyperactive delirium. The
current literature on the use of quetiapine suggests a starting dose
of 2550 mg and a titration up to 100200 mg a day (usually at
twice daily divided doses). Sedation and orthostatic hypotension
are the main dose-limiting factors.104 Findings to date suggest a
starting dose of 1015 mg daily for aripiprazole, with a maximum
dose of 30 mg daily.104
Important considerations in starting treatment with any anti-
psychotic for delirium may include EPS risk, sedation, anti-
cholinergic side effects, cardiac arrhythmias, and possible
drugdrug interactions. The FDA has issued a black box warn-
ing of increased risk of death associated with the use of typical and
atypical antipsychotics in elderly patients with dementia-related
psychoses.114
Chapter40 delirium 311
Psychostimulants
Some clinicians have suggested that the hypoactive subtype of
delirium may respond to psychostimulants such as methylpheni-
date, or combinations of antipsychotics and psychostimulants, or
antipsychotics and wakefulness agents such as modafinil.24,115118
However, studies with psychostimulants in treating delirium are
limited to case reports and one open-label study.116118 The risks
of precipitating agitation and exacerbating psychotic symptoms
should be carefully evaluated when psychostimulants are consid-
ered in the treatment of delirium in cancer patients.116118
Cholinesterase Inhibitors
As detailed above, impaired cholinergic function has been
implicated as one of the final common pathways in the neuro-
pathogenesis of delirium. 39 Despite case reports of beneficial
effects of donepezil and rivastigmine, a 2008 Cochrane review
concluded that there was insufficient evidence supporting the
use of cholinesterase inhibitors in the treatment of delirium.119
In addition, since the Cochrane review, a small double-blind,
placebo-controlled trial of rivastigmine for delirium in general
hospital settings showed no difference between medication and
placebo120 and another double-blind study in ICU settings com-
paring rivastigmine with placebo as an adjunct to haloperidol had
to be stopped prematurely due to increased mortality in the riv-
astigmine group.121
PREVENTION OF DELIRIUM
Several researchers have studied both pharmacologic and
non-pharmacologic interventions in the prevention of delirium
among older patient populations, particularly in surgical set-
tings.98,99,102,122127 The applicability of these interventions to the
prevention of delirium in cancer patients has not been studied.
A 2007 Cochrane review of delirium prevention studies con-
cluded that evidence on the effectiveness of interventions to pre-
vent delirium was sparse.125 Arandomized, placebo-controlled,
double-blind clinical trial in elderly hip-surgery patients,
low-dose haloperidol (1.5 mg a day) prophylaxis was not found
to be effective for the prevention of postoperative delirium; how-
ever, it markedly reduced the severity and duration of delirium,
and no drug-related side effects were noted.102 In a larger, more
recent randomized, double-blind, placebo-controlled trial, Wang
et al.123 recruited 450 elderly non-cardiac surgical patients and
found that 0.5 mg of haloperidol followed by an infusion of 0.1mg/
hr for 12 hours reduced incidence of delirium and length of ICU
stay while increasing mean time to onset of delirium and number
of delirium-free days in the first postoperative week. In another
randomized, double-blind, placebo-controlled trial involving 400
elderly joint-replacement surgical patients, Larsen etal.122 found
that 5 mg of olanzapine before and after surgery reduced inci-
dence of delirium. Arecent meta-analysis suggests that periop-
erative prophylactic use of antipsychotics decreases incidence of
delirium by about 50%.128 There has been less success in trying to
use antipsychotic prophylaxis for preventing delirium in the ICU.
Arecent study found no difference between haloperidol and pla-
cebo in ICU patients requiring mechanical ventilation.129 There is
now evidence that both melatonin52 and ramelteon130 are effec-
tive in reducing incidence of delirium in older patients admit-
ted to acute care settings. Two randomized, placebo-controlled
312 Section VII psychiatric disorders
prevention trials with donepezil among surgical patients under-
going total joint replacement surgery failed to show a difference in
the incidence of delirium and the duration of hospitalization.98,99
Another randomized, controlled trial suggested that proactive
geriatric consultations in a population of patients undergoing
surgery for hip fracture were an effective intervention in reducing
incidence and severity of delirium.126 Tatematsu etal.131 reported
that exercise therapy as part of early ambulation in cancer patients
appears to be associated with decreased need for escalation of
antipsychotic dosing in subsequent delirium.
Inouye and colleagues124 reported on a successful multicom-
ponent intervention program to prevent delirium in hospitalized
older patients, reducing the number and duration of episodes of
delirium in this population. However, in a more recent study of
1516 patients with terminal cancer, Gagnon etal.132 were not able
to reduce incidence of delirium with a multicomponent inter-
vention including early assessment of patient risk factors, active
engagement of physicians in planning for delirium, and education
of family members.
CONTROVERSIES IN THE MANAGEMENT
OF TERMINAL DELIRIUM
The use of antipsychotics and other pharmacologic agents in
the management of delirium in the dying patient remain con-
troversial. Some researchers have argued that pharmacologic
interventions are inappropriate in the dying patient. Delirium is
viewed by some as a natural part of the dying process that should
not be altered. Clearly, there are many patients who experience
hallucinations and delusions during delirium that are pleasant
and in fact comforting, and many clinicians question the appro-
priateness of intervening pharmacologically in such instances.
Another concern is that these patients are so close to death that
aggressive treatment is unnecessary, and antipsychotics or seda-
tives may be mistakenly avoided because of exaggerated fears
that they might hasten death through hypotension or respira-
tory depression.
Clinical experience in managing delirium in dying patients
suggests that the use of antipsychotics in the management of agi-
tation, paranoia, hallucinations, and altered sensorium is safe,
effective, and often quite appropriate. Management of delirium
on a case-by-case basis is most prudent. The agitated, delirious
dying patient should probably be given antipsychotics to help
restore calm. Await-and-see approach may be appropriate with tive function and increased distress and fatigue at six months
some patients who have a lethargic or somnolent presentation of
delirium or who are having frankly pleasant or comforting hallu-
cinations. Such a wait-and-see approach must, however, be tem-
pered by the knowledge that a lethargic or hypoactive delirium
may very quickly and unexpectedly become an agitated or hyper-
active delirium that can threaten the serenity and safety of the
patient, family, and staff. It is important to remember that, by
their nature, the symptoms of delirium are unstable and fluctuate
over time.
Perhaps the most challenging clinical problem is the manage-
ment of the dying patient with a terminal delirium that is unre-
sponsive to standard pharmacologic interventions. Approximately
30% of dying patients with delirium do not have their symptoms
adequately controlled by antipsychotic medications.10,127,133135
In studies of the use of palliative sedation for symptom control,
delirium was identified as the target symptom in up to 36% of
cases.134,135 Clinicians are sometimes concerned that the use of
sedating medications may hasten death via respiratory depres-
sion, hypotension, or even starvation. However, studies have
found that the use of opioids and psychotropic agents in hospice
and palliative care settings is associated with longer rather than
shorter survival.134140
The clinician must always keep in mind the goals of care and
communicate these goals to the staff, patients, and family mem-
bers when treating delirium in the terminally ill. The clinician
must weigh each of the issues in making decisions on how to best
manage the dying patient with delirium in a manner that pre-
serves and respects the dignity and values of that individual and
family.
THE CONTRIBUTION OF DELIRIUM
TOPROGNOSIS
Delirium in terminally ill cancer patients is a relatively reliable
predictor of approaching death in the coming days to weeks. The
death rates among hospitalized elderly patients with delirium
over the three-month post-discharge period range from 22% to
76%.29 In the palliative care setting, several studies provide sup-
port that delirium reliably predicts impending death in patients
with advanced cancer. Bruera and colleagues92 demonstrated a
significant association between delirium and death within four
weeks, and incorporating delirium into a previously validated
model for predicting 30-day survival in terminally ill cancer
patients improves prediction accuracy.141 In Japan, Morita and
colleagues142 found that delirium predicted poor short-term prog-
nosis in patients admitted to hospice. Caraceni and colleagues143
evaluated the impact of delirium on patients for whom chemo-
therapy was no longer considered effective and had been referred
to palliative care programs. The length of survival of patients
with delirium differed significantly from those without delirium.
Compared with an overall median survival of 39 days in their
study, delirious patients died, on average, within 21days. In addi-
tion to being associated with greater incidence of mortality, delir-
ium may also signal risk of impending worsening in cognitive
function, distress, and quality of life. Basinski etal.144 followed
90 patients who underwent hematopoietic cell transplant for a
year and found that patients who experienced delirium within the
month after transplant also reported worse memory and execu-
and one year post-transplant. Patients who had experienced
post-transplant delirium also reported worse physical health at six
months and worse mental health at one year compared to patients
who did not become delirious. Recognizing an episode of delir-
ium, in the late phases of palliative care, is critically important
in treatment planning and in advising family members on what
to expect.
CONCLUSION
Psycho-oncologists commonly encounter delirium as a major
complication of cancer and its treatments, particularly among
hospitalized cancer patients. Proper assessment, diagnosis, and
management of delirium are essential in improving quality of life
and minimizing morbidity.
 Chapter40 delirium 313

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 CHAPTER41
Substance Use Disorders
Kenneth L.Kirsh, Adam Rzetelny,
and Steven D.Passik
INTRODUCTION
Discussing the management of substance use in the person with
cancer might have been seen as having only minor clinical relevance
until recently. Historic literature on this subject suggests problems
of substance abuse are only infrequently encountered in oncol-
ogy, perhaps due to much of this academic work coming from ter-
tiary care settings, where fewer patients with histories of addiction
have been traditionally encountered. Alternately, cancer typically
remains a disease of later life, whereas addiction manifests earlier,
making it unlikely to emerge de novo in a person first exposed to
substances with abuse potential when they are older and ill. 1,2
Another possibility is that cancer used to typically follow a fast and
fatal trajectory, so any exposure to controlled substances was likely
to be brief and to occur during a period of time that the person was
becoming increasingly disabled. Thus, even if the exposure to such
drugs might trigger a relapse in someone with a prior addiction, the
dysfunctional behaviors that might have been set in motion would
be mediated and limited by the impact of cancer itself. Or perhaps
it was simply the trivialization of addiction that characterized the
early rhetoric accompanying the increase in opioid prescribing.
All aspects of cancer care can be affected by the presence of a
substance use disorder (SUD). Unchecked drug or alcohol abuse
can cause non-adherence to potentially life-saving cancer treat-
ments, threatening healthcare efforts from diagnosis to palliative
care. If the psycho-oncologist is working outside a tertiary care
academic center, the frequency with which they will be confronted
with SUDs is shockingly high, due to the high base rate of these
disorders in this population, which is more reflective of the popu-
lation as a whole. If one considers that substance use can be a risk
factor for cancer, one would expect substance abusers to be over-,
not under-represented in the oncology population. Unfortunately,
many psycho-oncology practitioners from psychiatry to psychol-
ogy to nursing to social work are lacking in knowledge about
SUDs. There is an enormous gap between the prevalence of these
problems and the expertise in caring for cancer patients who are
struggling with them.
PREVALENCE AND CLINICAL SIGNIFICANCE
The rates of SUDs are consistent phenomena in the United States
with estimated base rates of 6%15%, though, as mentioned
above, the drugs of abuse change over time. 3 This prevalence
of drug abuse certainly includes medically ill patients and can
negatively influence how patients are treated. Although few
studies have been conducted to evaluate the epidemiology of
substance abuse in patients with advanced illness, SUDs have
traditionally appeared to be rare within the tertiary-care popu-
lation with cancer and other advanced diseases.4,5 However, the
prevalence of alcoholism in major cancer centers is most likely
underestimated.
The belief that drug habits would diminish and vanish with age
is no longer held with the certainty of past belief. As the baby
boom cohort ages, the extent of alcohol and medication mis-
use is predicted to significantly increase. One study suggested
that the number of illicit drug users aged 50years or older will
approximately double from the year 2000 to 2020 because of a
52% increase in this segment of the population and the attendant
shift in attitudes and historical experiences with substance use in
this cohort.6
Both illicit drug use and the non-medical use of prescription
opioids have increased significantly in the general population over
the last decade.7 Marijuana use is growing and, for cancer patents,
this might include an attempt to self-medicate nausea, anorexia,
pain, anxiety, or combinations of these common symptoms. 8
Prescription drug abuse also is growing among older adults, with
SUD treatment admissions among adults over 50 doubling in
recent years. During this same time period, alcohol as the only
substance of abuse being treated decreased from 87.6% to 58.0%,
while the addition of other drugs to alcohol increased from 12.4%
to 42.0%.7
CLINICAL FEATURES AND
DIAGNOSTICCRITERIA
It has been a challenge to adequately define substance abuse and
addiction in patients with cancer, as the definitions of both terms
have been adopted from SUD populations without medical illness.
Further, the pharmacological phenomena of tolerance and physi-
cal dependence continue to be commonly confused with abuse
and addiction. The use of these terms is so strongly influenced by
sociocultural considerations that it may lead to confusion in the
clinical setting. Therefore, the clarification of this terminology is
necessary to improve the diagnosis and management of substance
abuse when treating patients with advanced diseases.9
318 Section VII psychiatric disorders
The term substance abuse refers to psychosocial, physical,
and vocational harm that occurs from drug-taking. However,
identifying harmful drug-taking behaviors is more difficult when
patients are receiving potentially abusable drugs for legitimate
purposes. Substance dependence, on the other hand, refers to
a normal phenomenon experienced by patients taking medica-
tion for chronic conditions. Related to this, tolerance occurs
when a higher dosage of a drug is required to achieve the same
effect, while physical dependence occurs when a patient begins
to require a drug in order to function normally and can lead to
withdrawal symptoms when medication administration ceases.
With substance abuse being increasingly widespread in the pop-
ulation at large, patients with cancer who have used illicit drugs
are more frequently encountered in medical settings. Illicit drug
use, actual or suspected misuse of prescribed medication, or actual
SUDs create the most serious difficulties in the clinical setting,
complicating the treatment of pain management. However, the
management of substance abuse is fundamental to foster adher-
ence to medical therapy during treatment. In addition, adverse
interactions between illicit drugs and medications prescribed
as part of the patients treatment can be dangerous. Continuous
substance abuse may alienate or weaken an already tenuous social
support network that is crucial for alleviating the chronic stressors
associated with advanced disease and its treatment. Therefore, a
history of substance abuse can impede treatment and pain man-
agement and can increase the risk of hastening morbidity and mor-
tality, which can only be alleviated by a therapeutic approach that
addresses drug-taking behavior while expediting the treatment of
the malignancy and distressing symptoms, as well as addiction.4,5
Aberrant Drug-Taking Behaviors
Whether or not the patient has a formal historic or current SUD
diagnosis, the psycho-oncologist is likely to be consulted when
problematic drug-taking behaviors come to the attention of the
treatment team. It is difficult to have confidence that aberrant
drug-taking behaviors exist when a drug is, at least initially, legiti-
mately prescribed for a medically diagnosed purpose. Being able
to categorize these questionable behaviors as apart from social or
cultural norms also is based on the assumption that parameters of
normative behavior exist. It is important to recognize that these
behaviors exist along a continuum, with some being less aber-
rant (such as aggressively requesting medication) and others more
aberrant (such as injection of oral formulations) (see Table 41.1).
If a large portion of patients were found to engage in a certain
behavior, it may be normative, and judgments regarding aber-
rancy should be influenced accordingly.4,5
Today, more is known about aberrant behaviors and their
prevalence, as opposed to the mid-1990s. It is common for many
patients to have at least a few aberrant behaviors in a six-month
period.10 Also, once a patient has demonstrated four behaviors in
his or her lifetime, he or she has an 85% likelihood of meeting
diagnostic criteria for substance use disorder.11 However, there is
still much to be learned, confirmed, replicated, and studied.
CLINICAL MANAGEMENT OF SUBSTANCE
USE DISORDERS IN ONCOLOGY
One of the most challenging issues in caring for patients with
cancer typically arises from patients who are actively abusing
alcohol or other drugs, since patients who are actively abusing
Table41.1 The Spectrum of Aberrant Drug-Related Behaviors
Aberrant Drug-Related Behaviors Aberrant Drug-Related Behaviors
More Suggestive of Addiction Less Suggestive of Addiction
Selling prescription drugs Aggressive complaining about need for
higher doses
Prescription forgery Drug hoarding during periods of
reduced symptoms
Stealing or borrowing another Requesting specific drugs
patients drugs
Injecting oral formulation Acquisition of similar drugs from other
medical sources
Obtaining prescription drugs from Unsanctioned dose escalation,
non-medical sources 12times
Concurrent abuse of related illicit Unapproved use of the drug to treat
drugs another symptom
Multiple unsanctioned dose Reporting psychic effects not intended
escalations by the clinician
Recurrent prescription losses
drugs experience more difficulty in managing pain.12 Patients
may become caught in a cycle where pain functions as a barrier to
seeking treatment for addiction, possibly complicating treatment
for chronic pain.13 Also, because pain is under-treated, the risk
of binging with prescription medications and/or other substances
increases for drug-abusing patients.12
General Management Suggestions
The following suggestions can be beneficial for managing the
patient who is actively abusing drugs or has a history of SUD.
The principles outlined assist clinicians in establishing structure,
control, and monitoring of addiction-related behaviors, which
may be helpful and necessary at times in all pain treatment.4
Recommendations for the long-term administration of poten-
tially abusable drugs, such as opioids, to patients with a history
of SUD are based exclusively on clinical experience. Research is
needed to ascertain the most effective strategies and to empiri-
cally identify patient subgroups that may be most responsive to
different approaches. The following guidelines broadly reflect
the types of interventions that might be considered in this clini-
cal context.9
Multidisciplinary Approach
Efforts for pain and symptom management are often complicated
by various medical, psychosocial, and administrative issues in the
population of cancer patients with SUD. The most effective team
may include a physician with expertise in pain/palliative care,
nurses, social workers, and, when possible, a mental healthcare
provider with expertise in the area of addiction medicine.4,5
Assessment of Substance Use History
Clinicians often avoid asking patients about drug abuse for fear
of upsetting them or from difficulty with broaching the subject.
In addition, there is often the expectation that patients will not
answer truthfully. However, obtaining a detailed history of dura-
tion, frequency, and desired effect of drug use is vital. Adopting
 Chapter41 substance use disorders 319

a nonjudgmental position and communicating in an empathetic
and truthful manner are the best strategies when taking patients
substance abuse histories.4,5
In anticipating defensiveness from the patient, it can be help-
ful for clinicians to mention that patients often misrepresent their
drug use for logical reasons, such as stigmatization, mistrust of
the interviewer, or concerns regarding fears of under-treatment.
It is also wise for clinicians to explain that in an effort to keep the
patient as comfortable as possible, by preventing withdrawal states
and prescribing sufficient medication for pain and symptom con-
trol, an accurate account of drug use is necessary.4,5
The implementation of a careful, graduated-style interview can
be beneficial in slowly introducing the assessment of drug abuse.
This approach begins with broad and general inquiries regarding
the role of drugs in the patients life, such as caffeine and nicotine,
and gradually proceeds to more specific questions regarding illicit
drugs. This interview style can assist in discerning any coexisting
psychiatric disorders, which can significantly contribute to aber-
rant drug-taking behavior. Once identified, treatment of comorbid
psychiatric disorders can greatly enhance management strategies
and decrease the risk of relapse.4,5
Risk Assessment Tools
Potential opioid use must be accompanied by risk stratification
and management. Afull psychiatric interview may not always be
feasible; thus time-sensitive measures are needed to help in this
endeavor. Many screening tools contain items on personal and
family history of addiction as well as other history-related risk fac-
tors, such as pre-adolescent sexual abuse, age, and psychological
disease. These are tools for clinical decision-making and should not
be viewed as necessarily diagnostically accurate.10,13 Whatever tool
the clinician chooses (see Table 41.2 for examples), it is advised that
the screening process be presented to the patient with the assur-
ance that no answers will negatively influence effective treatment.
Setting Realistic Goals for Therapy
Recurrence rates for drug abuse and addiction are high in general.
The stress associated with cancer and the easy availability of cen-
trally acting drugs increases this risk. Therefore, the prevention of
relapse may be impossible in this setting. Gaining an understand-
ing that compliance and abstinence are not realistic goals may
decrease conflicts with staff members in terms of management
goals. Instead, the goals might be perceived as the creation of a
structure for therapy that includes ample social/emotional sup-
port and limit-setting to control the harm done by relapse.4,5
There may be subgroups of patients who are unable to comply
with the requirements of therapy because of severe SUDs and
comorbid psychiatric diagnoses. In these instances, clinicians
must modify limits on various occasions and endeavor to develop
a greater variety and intensity of supports. This may necessitate

Table41.2 Examples of Commonly Available Risk Screening Tools

Risk Tool Name Abbreviation Format and Use

Addiction Severity Index ASI Designed as a semi-structured interview
Utilizes 10-point scale
Cut down, Annoyed, Guilty, CAGE and 4-item tool administered by a clinician
Eye-opener/Adjusted to Include Drugs CAGE-AID CAGE for traditional alcohol screening

CAGE-AID adapted for alcohol and drug use

Current Opioid Misuse Measure COMM 17-item scale

Designed to assess current aberrant behavior
Drug Abuse Screening Test DAST 28-item tool, self-administered
Shorter versions and targeted versions (i.e., adolescents) exist

Diagnosis, Intractability, Risk, Efficacy
Opioid Risk Tool
Prescription Drug Use Questionnaire
DIRE Physician-administered, 7-item tool, with total score ranging from 7 to 21
DIRE scores 13 indicate that patient may not be a suitable candidate for long-term opioid
analgesia
ORT 5-item scale, self- or clinician administered
Screens for risk of aberrant behaviors associated with substance abuse in chronic pain patients
PDUQ Physician-administered, 42-item tool with yes-or-no answers
Designed for use in chronic pain patients with suspected addiction to pain medication
Scores > 15 associated with SUD

Pain Medication Questionnaire PMQ Self-administered, 26-item tool

Screening Instrument for Substance
Abuse Potential
Screener and Opioid Assessment for
Patients with PainRevised
Used to evaluate risk of opioid misuse in chronic pain patients
SISAP Physician-administered, 5-item tool
Designed as a screen for potential opioid abusers in patients with chronic non-cancer pain
SOAPP-R Brief, self-administered assessment to explore likelihood of engaging in aberrant drug-taking
behaviors

Adapted from Passik SD, Kirsh KL, Casper D. Addiction-related assessment tools and pain management:instruments for screening, treatment planning, and monitoring compliance.
Pain Med. 2008;9(S2):S145S166.
320 Section VII psychiatric disorders
frequent team meetings and consultations with other clinicians.
However, pertinent expectations must be clarified, and therapy
that is not successful should be modified.4,5
Evaluation and Treatment of Comorbid
PsychiatricDisorders
High rates of comorbidity of personality disorders, depression,
and anxiety disorders exist in alcoholics and other patients with
substance abuse histories.14 Those with a history of alcohol abuse
have been found to be at higher risk for other psychiatric disor-
ders. The most common comorbid mental disorders associated
with alcoholism are anxiety disorders (19.4%), antisocial per-
sonality disorder (14.3%), affective disorder (13.4%), and schizo-
phrenia (3.8%).15 The occurrence of comorbid mental disorders
in alcoholics may contribute to poor treatment compliance and
success due to cognitive limitations and premorbid (in relation
to the diagnosis of cancer) pain and neurological deficits. The
same is true of opioid abuse, where 85% of addicts have a comor-
bid, non-drug-abuse-related psychological disorder.14 Thus, the
psycho-oncologist assessing the cancer patient with addiction
or alcoholism must identify and treat any comorbid disorders
present. The treatment of depression and anxiety can increase
patient comfort and decrease the risk of relapse or aberrant
drug-taking.4,5
SELECTING APPROPRIATE DRUGS AND
ROUTE OF ADMINISTRATION FOR THE
SYMPTOM AND SETTING
Use of long-acting analgesics in sufficient amounts may help to
minimize the number of rescue doses needed, lessen cravings,
and decrease the risk of abuse of prescribed medications, given the
possible difficulty of using short-acting formulations in patients
with substance abuse histories. Rather than being overly con-
cerned regarding the choice of drug or route of administration,
the prescription of opioids and other potentially abusable drugs
should be carried out with limits and guidelines.4,5
Many clinicians now respond to particularly high doses with
rotation to another opioid. This practice is based on capitalizing
on incomplete cross-tolerance, or the unique pharmacology of
methadone in particular, to bring doses down while maintain-
ing or improving efficacy and changing the balance of efficacy
to toxicity.16 Some clinicians set arbitrary dose limits for various
opioids, while others stopped using certain opioids that they per-
ceived as having higher risk or street value. Still others became so
disillusioned as to stop using opioids completely.
Recognizing Specific Drug Abuse Behaviors
In an effort to monitor the development of aberrant drug-taking
behaviors, all patients who are prescribed potentially abusable
drugs must be evaluated over time. This is particularly true for
those with a remote or current history of drug abuse, includ-
ing alcohol abuse. Should a high level of concern exist regard-
ing such behaviors, frequent visits and regular assessments of
significant others who can contribute information regarding the
patients drug use may be required. To promote early recogni-
tion of aberrant drug-related behaviors, it may be necessary to
have patients who have been actively abusing drugs in the recent
past submit urine specimens for regular screening of illicit, or
licit but non-prescribed, drugs. When informing the patient
of this approach, explain that it is a method of monitoring that
can reassure the clinician and provide a foundation for aggres-
sive symptom-oriented treatment, thus enhancing the therapeutic
alliance with the patient.4,5
Buprenorphine and Naltrexone
Two newer therapies used in medication-assisted treatment
(MAT) of those with opioid addiction and alcoholism are not
without their complexities if they are to be used in people with
cancer.
Buprenorphine is a partial opioid agonist that has significantly
advanced MAT for opioid addiction on an international level.
Available as a pill, sublingual film (with and without naltrexone),
and as an implant for addiction treatment, its use in people with
cancer can complicate the treatment of pain in the setting of dis-
ease progression, requiring dose escalation that could bump
up against the drugs ceiling effect, or in the treatment of acute
pain requiring the use of a pure mu agonist. However, there are
also reports of the successful use of buprenorphine in its oral and
transdermal form for chronic and breakthrough cancer pain in
non-addicts.17 If a person with cancer also has a history of opi-
oid addiction and is to be managed with continuation of their
buprenorphine treatment, a consultation should be sought from
an addiction medicine expert.
The opioid antagonist naltrexone is used orally to treat alcohol
cravings and opioid addiction and is available as a monthly depot
injection for addiction treatment. While ultra-low-dose naltrex-
one has been used to augment opioids for cancer-related pain and
for the treatment of side effects such as constipation, little has been
written about the use of this therapy for addiction treatment in
people with cancer. While one can imagine antagonist therapy
having a role in, for example, people surviving cancer who strug-
gle with addiction (and in whom pain severe enough to require
opioids is not part of the clinical picture), in those with pain and
with active disease its role is limited. There has been a paucity of
data and direct clinical experience on which recommendations
might be made.
Using Non-drug Approaches as Appropriate
The most effective psychotherapeutic treatment approach with
medically ill people appears to be one that focuses on the develop-
ment of effective coping skills, relapse prevention, and treatment
adherence. Alcohol, or the specific substance being abused, is
representing one of the dependent patients primary, albeit mal-
adaptive, coping tools. As a result, the improvement of coping
skills in these individuals is critical. When compounded with the
stress associated with having cancer, cessation can be overwhelm-
ing and can contribute to non-adherence and discontinuation
of treatment. Teaching specific, illness-related coping methods
with an emphasis on containing episodes of consumption is
essential. Further, the recognition and treatment of anxiety and
depression may decrease the patients need and desire for alco-
hol or substances. As an alternative to the abstinence approach,
a harm reduction with crisis intervention as a central component
should be utilized, the fundamental aims being enhancement
of social support, maximization of treatment compliance, and
containment of harm associated with episodic relapses. Further,

minimizing the frequency and intensity of the patients use and
consumption are the broad goals of treatment. Thereby, further
damage to the patient will be reduced, and treatment adherence
will be enhanced.
Another psychotherapeutic approach that is beneficial for this
population of patients is support groups and 12-step programs.
The problem lies in that traditional 12-step groups are based on
an abstinence only policy. This poses a problem for patients
who are being treated with opioids for pain-related syndromes.
More recently, support groups have been tailored for this specific
population.
Many non-drug approaches can be used to assist patients in cop-
ing with chronic pain in advanced illness. Such educational inter-
ventions may include relaxation techniques, ways of thinking of
and describing the experience of pain, and methods of communi-
cating physical and emotional distress to staff members. Although
non-drug interventions may be helpful adjuvants to management,
they should not be perceived as substitutes for drugs targeted at
treating pain or other physical or psychological symptoms.4,5
Management Plan
Guidelines for Prescribing
Patients who are actively abusing must be seen weekly to build
a good rapport with staff and to afford evaluation of symptom
control and addiction-related concerns. Frequent visits allow the
opportunity to prescribe small quantities of drugs, which may
decrease the temptation to divert and provide a motive for not
missing appointments.4,5
Procedures for prescription loss or replacement should be
explicitly explained to the patient, with stipulation that no renew-
als will be given if appointments are missed. The patient should
also be informed that dose changes require prior communication
with the clinician. Additionally, clinicians who are covering for
the primary care provider must be advised of the guidelines that
have been established for each patient, with a substance abuse his-
tory, to avoid conflict and disruption of the treatment plan.4,5
Using 12-Step Programs
Depending on the patients stage of illness and functional capa-
bilities, the clinician may want to consider referring the patient
to a 12-step program with the stipulation that attendance be doc-
umented for ongoing prescription purposes. If the patient has a
sponsor, the clinician may wish to contact the patients sponsor,
depending on the stage of illness and individual capabilities, in
an effort to disclose the patients illness and that medication is
required. This contact will help to decrease the risk of stigmatizing
the patient as being non-compliant with the ideals of the 12-step
program.4,5 If the patient is unable to participate in a 12-step pro-
gram, other psychosocial and/or spiritual team members can pro-
vide care that supports sobriety.
Urine Drug Testing
One of the most commonly utilized tools in risk management in
chronic non-cancer pain management and adherence monitor-
ing/sobriety in addiction treatment is urine drug testing (UDT).
Depending upon the method employed, UDT can be used to gauge
whether the patient is adherent to his or her prescribed medica-
tion, taking non-prescribed licit medications, or using illicit drugs
and alcohol.18
Chapter41 substance use disorders 321
It is safe to say UDT is under-utilized in the treatment of people
with cancer and addiction as well as those being treated with opi-
oids for cancer-related pain. However, in a recent study Barclay
and colleagues risk stratified a sample of 114 patients with cancer
pain using the Opioid Risk Tool and then correlated the results
with those of UDT where available.19 Overall, 45% of people in
the sample had an unexpected result. Over two-thirds of those in
the high-risk group had an abnormal UDT. This study debunks the
myth that (older) people with cancer pain are somehow immune
to problems of substance abuse. Indeed, given that people with
cancer are now living longer with what has become, for many, a
chronic painful disease, those with risk factors for substance abuse
are likely to have considerably longer exposures to opioids than in
the past with much greater risk of abuse, addiction, diversion, and
potential for drugdrug interactions and overdose. The authors
suggest that approaches developed for risk management in opioid
therapy in general be applied to those with cancer pain.
Despite this recent study, UDT remains under-utilized in man-
aging cancer pain. Perhaps clinicians, due to unfamiliarity with
the evolution in methods and mindset that occurred in the labora-
tory and clinic in the last decade, think of UDT in only its forensic
incarnation. In that view, it is a means to find out if bad people
are doing bad things. Thus they are fearful that introducing it
to patients and integrating it into management will be offensive,
and they may believe that they lack a vocabulary for discussing
results with patients. The forensic method, from which modern
clinical testing sprung, tends to rely on immunoassay (IA) test-
ing, which offers fast, class level (not drug-specific) results with
high cutoffs. In recent years, gas and liquid chromatography with
mass spectrometry have become capable of giving highly accu-
rate drug-specific results in a timely fashion (12days as opposed
to 10days2 weeks). Such results can be used to gauge whether a
patient is misusing a range of drugs or alcohol as well as his or her
adherence with specific medications and controlled substances
that are being prescribed. There is a paucity of data on how such
techniques might influence the management of cancer patients,
and more data is needed in this arena, but the use of UDT for those
with pain and/or substance use disorder is well documented.2024
Family Sessions and Meetings
The clinician, in an effort to increase support and function, should
involve family members and friends in the treatment plan. These
meetings will allow the clinician and others to become familiar
with the family and additionally may assist the team in identify-
ing family members who are using illicit drugs. Offering refer-
ral of these identified family members to drug treatment can be
portrayed as a method of gathering support for the patient. The
patient should also be prepared to cope with family members or
friends who may attempt to buy or sell the patients medications.
These meetings will assist the team in identifying dependable
individuals who can serve as a source of strength and support for
the patient during treatment.4,5
CONCLUSION
Treating oncology patients who have an SUD is complicated
and challenging. Using a treatment plan that involves a team
approach for their complex needs is the optimum strategy. While
pain management specifically may continue to be challenging
322 Section VII psychiatric disorders
even when all treatment plan procedures are implemented, the
healthcare teams goal should be providing the highest level of
humane and respectful care for all patients with substance use
disorders.
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2. Minozzi S, Amato L, Davoli M. Development of dependence fol-
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3. SAMHSA. Substance Abuse and Mental Health Services
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 CHAPTER42
Post-traumatic Stress Disorder
Associated with Cancer
Diagnosis and Treatment
Matthew N.Doolittle and Katherine N.DuHamel
INTRODUCTION
Post-traumatic stress disorder (PTSD) is a constellation of symp-
toms occurring in response to a traumatic event. PTSD was first
recognized as a formal psychiatric disorder in 1980 in the third
edition of the American Psychiatric Associations Diagnostic and
Statistical Manual of Mental Disorders (DSM-III).1 However, the
notion that exposure to a significant stressor could trigger a severe
and dysfunctional psychological response has a much longer his-
tory. Historically linked to warfare, PTSD has also been associated
with significant civilian stressors such as assault, motor vehicle
accidents (MVAs), and natural disasters. In 1994, the fourth edi-
tion of the Diagnostic and Statistical Manual of Mental Disorders
(DSM-IV)2 specified that a life-threatening illness, such as malig-
nant disease, could also serve as a traumatic event capable of pre-
cipitating PTSD. The fifth edition of the Diagnostic and Statistical
Manual of Mental Disorders, published in 2013, continues to iden-
tify life-threatening illness or debilitating medical condition as a
possible traumatic event.3
Since the first inclusion of medical illness as a potential trigger
to PTSD in the DSM-IV, a large scientific literature has emerged
examining PTSD associated with cancer diagnosis and treat-
ment,4,5,6,7 and research has focused both on prevalence of PTSD
symptoms and diagnoses in adult and child cancer patients and
survivors, 8,9,10 and increasingly on family members and others
affected more indirectly by the cancer.1115 The possibility that
notification of carrier status for genes associated with hereditary
cancer syndromes has also been investigated.16,17
The subset of literature on PTSD and malignancy that incor-
porates instruments with reported validity in identifying PTSD
is growing; however, even among studies utilizing these instru-
ments, many focus primarily on symptoms or distress without
identifying a formal disorder. The use of various endpoints and
instruments, as well as various exposures evaluated at different
time points, further complicates interpretation of the literature
and identification of prevalence of PTSD. Significant changes in
formal criteria for identifying PTSD in DSM-5 may make this lit-
erature even harder to interpret.
PREVALENCE
Despite these challenges, the literature on post-traumatic stress
disorder in oncology continues to grow. Since the last edition of
this book, at least 139 new papers have been published in medical
literature on various topics related to PTSD and cancer, including
prevalence, screening, interventions, and specific PTSD screening
instruments.* The number of papers focused primarily on PTSD
and cancer is much smaller, but still includes 86,000 unique sub-
jects. Although one 2011 large-scale population study of more
than 70,000 prostate cancer patients18 begins to address the
* The authors conducted a literature search limited to the past five
years in November 2013, utilizing major databases including PubMed,
Embase, Scopus, Web of Science, Cochrane Evidence Based Medicine
Database, CINAHL (nursing database), PsycINFO, and HAPI (Health and
Psychosocial Instruments). In addition to searching for cancer and PTSD as
major topics in conjunction with prevalence, screening, and interventions,
the search included specific screening tools identified in public literature of
the National Center for PTSD. These included the following:
Clinician-Administered PTSD scale (CAPS)
Davidson Trauma Scale (DTS)
Impact of Events ScaleRevised (IES-R)
Los Angeles Symptom Checklist (LASC)
Modified PTSD Symptom Scale (MPSS-SR)
Penn Inventory for Posttraumatic Stress Disorder (Penn Inventory)
Posttraumatic Diagnostic Scale (PDS)
The Primary Care PTSD Screen (PC-PTSD)
PTSD Checklist (PCL)
PTSD Symptom ScaleInterview (PSS-I)
Screen for Posttraumatic Stress Symptoms (SPTSS)
Short Form of the PTSD ChecklistCivilian Version
Short Screening Scale for PTSD
SPAN
SPRINT
Structured Clinical Interview for the DSM-IV Axis IDisorders (SCID
PTSD Module)
Structured Interview for PTSD (SI-PTSD)
Trauma Symptom Checklist40 (TSC-40)
Trauma Symptom Inventory (TSI)
324 Section VII psychiatric disorders
gender imbalance long noted in the literature, in general women
subjects with breast cancer continue to dominate in most studies.
Asummary of some recent papers is presented in Table 42.1.
General Population Estimates
The literature remains largely cross-sectional, and findings are
variable. Reported prevalences of PTSD or of likely PTSD based
on screening measures in recent studies range from 4.3% in a
cross-sectional study of 511 German prostate patients to 87.2%
in a Greek cross-sectional study of 195 subjects (which was one
of the few studies utilizing the gold-standard psychiatric diag-
nostic tool).19,20 Simple mathematical calculation using recently
reported rates suggests prevalence of approximately 16%18%
among cancer patients. If this figure were accurate, it would
represent approximately double the lifetime risk for PTSD in the
United States, which is estimated to be 8.7%.3 Although such an
estimate is not likely to be statistically accurate, it is consistent
with previous estimates of the prevalence of PTSD in the cancer
population of 10%20%. Nonetheless, the range of reported PTSD
in the oncology setting remains very wide, and this distribution
continues to complicate any general estimate of PTSD in the set-
ting of cancer.
Higher Risk Subsets
Very little is known about risk factors for PTSD, and no clear pre-
dictors have been identified. However, prior trauma; sex; African
American, Native American, or Latino race; and lower education
levels have been identified as risk factors in the general popula-
tion, and the National Center for PTSD suggests that a signifi-
cant majority of patients with acute stress disorder will go on
to develop PTSD.3,21,22 Depression, anxiety disorders, and sub-
stance use disorders often seem to occur with PTSD in the general
population. 3,21,23,24 Some work with breast cancer patients has
confirmed that prior trauma or prior diagnosis of PTSD as well
as anxiety disorders seems to be associated with higher rates of
PTSD.22,25,26 However, information about all of these population
subsets and about psychiatric comorbidities is largely lacking in
the oncology literature. Only one recent study in the cancer set-
ting, for instance, identified acute stress disorder as a major end-
point, though it is believed to be a possible predictor of PTSD.27
Information about education and its relationship to PTSD is also
inconsistently reported. PTSD is more common among women
in the general population, 3 but it is not possible to make conclu-
sions about the sex distribution among cancer patients; some work
with specific populations, including bone marrow recipients, sug-
gests a different sex distribution, though work is still too prelimi-
nary to generalize. Furthermore, the continued predominance of
cross-sectional literature makes it impossible to assess PTSD lon-
gitudinally, which may be significant as both the stressors related
to cancer treatment and the expression of PTSD symptoms vary
over time.
Simple mathematical calculation using reported prevalence rates from
papers published between 2008 and late 2013 would suggest a prevalence
of 18.3% in all 7545 subjects included in the literature; excluding the
study with the highest rate of 87.2%, which was far higher than any other
reported prevalence and which used the gold-standard SCID but also
did not identify the sex of the subjects, overall prevalence rate by basic
calculation would be 16.5%.
Perhaps the most important gap in the literature on PTSD in
cancer is in the area of race. Fewer than half of recent studies
reported race, though it is believed to be a risk factor in the general
population. Subjects in studies reporting race remain overwhelm-
ingly white or Caucasian (with a range of 60%100%). Racial dis-
parity is almost never significantly addressed in the literature, but
the findings that are reported are highly suggestive. In one 2011
secondary evaluation of a previous study of 329 men with pros-
tate cancer, for instance, baseline prevalence of PTSD among the
10% of the sample reported to be African American was nearly
double that of other races (34.5% vs. 13.7%), and the disparity not
only persisted but may have worsened over the 24-month course
of the study, which at the end showed a prevalence of PTSD of 39%
in the African American population, whereas the prevalence in
other races was only 12%.28
Given what little is known about risk factors for post-traumatic
stress disorder in the general population, as well as the fact that
the risk of post-traumatic stress disorder and the concept of dis-
tress vary culturally,3 the lack of basic demographic information
and analysis significantly limits our present understanding of the
extent and significance of post-traumatic stress disorder among
cancer patients.
SCREENING
PTSD is a diagnosis that requires detailed evaluation, and recent
changes to formal diagnostic criteria have only made the pro-
cess more complex. The Structured Clinical Interview for the
DSM-IV Axis IDisorders (SCID) remains the gold standard for
formal research diagnosis, and in general clinician-administered
instruments are believed to be more accurate than self-reports,
which do not allow flexible evaluation of symptoms or consider-
ation of differential diagnoses. Checklists in general may result
in over-diagnosis, in part because they do not allow evaluation of
dysfunction associated with symptoms, some of which are com-
mon after distressing experiences. As noted, however, the course
of PTSD varies over time, and some research has found that sub-
syndromal PTSD after an injury may predict later development
of PTSD.29 In any event, lengthy clinician-administered surveys
or psychiatric interviews are not practical for large-scale research
studies, or for screening in busy clinics. Because of this, briefer
screening instruments are by far the most commonly used and
reported in the literature. At least 11 instruments, including the
SCID, are represented in the recent literature. Of these, the most
commonly used was a version of the Impact of Events Scale modi-
fied for PTSD (Impact of Events Scale Revised, or IES-R) and the
PTSD Checklist, Civilian Version (PCL-C). The most widely cited
scale is the IES-R, the authors of which report moderate or high
sensitivity and specificity for accurate diagnosis of PTSD in a
number of published papers.30 Studies focusing specifically on the
validation of widely used PTSD scales in medical illness are less
common, and are complicated by the choice of cutoff scores that
vary by paper and author. However, sensitivity and specificity for
the IES-R in the setting of medical illness have been reported to
be 80%100% and 85%91%, respectively.31 One study of cancer
patients identifies a sensitivity of 60% and a specificity of 99% for
the PCL-C.9 The incompletely quantified but apparently significant
rate of PTSD in oncology and the ongoing under-representation
of risk factors in the related literature suggest that screening for
Table42.1 Summary of Recent Literature on Post-traumatic Stress Disorder in Oncology

Study Characteristics Sample Characteristics Trauma Characteristics Findings

Author, Type of Study Location Sample (Size, CA Ethnicity Age % Female Years of % Married/ Postulated Time since Endpoints PTSD Non-PTSD Instruments PTSD
Date Typed) Education Partner Traumatic Exposure Endpoints Prevalence
Exposure

Applebaum, RCT US 46 (18 multiple 4.4% = AA; 82.6% M = 52.33 39% College grad: 80.4% SCT 3 years PCL-C > 1 SD BSI depression and PCL-BSI Not directly
2012 myeloma or = White; 6.5% = SD = 10.6 65.2% (2.6yrs) above mean, BSI distress reported
amyloidosis, 10 Hispanic; 6.5% = Some college:
acute/chronic Other 17.4%
myeloid leukemia,18
other)
Anastaslou Cross- sectional Greece 15 patients (PC NR M = 63.9 0% Education similar surgery 1 month after DTS > 40 DTS > 40 (83% DTS > 40 26.7%
2011 following radical SD= 4.3 in 8 controls; surgery PTSD)
prostatectomy) 20 education divided
control (surgery into basic, 12 years,
benign PC) and university

Bill-Axelson Population Sweden 72,613 (PC) NR age 6574 0% NR 68.6% Diagnosis mean 3.5 Hospitalization Depression, ICD-9 or ICD-10 RR 1.61 (PTSD
2011 cohort 217,839 controls (w/ (36.3%) years (pts anxiety, PTSD discharge dx hosp)
out PC) ages 7584 only) RR 2.18 (outpt
(31.2%) visit)
Branstrom RCT 71 subjects (54 = BC, NR M = 51.8 98.6% College = 54.9% NR Diagnosis < 1year > 2 IES scales IES scales No population
2010 10 = gyne, 5 = SD= 9.86 years controls for
lymphatic, 1 = comparison
pancreatic, 1 = ca in
neck) 39 control

Costa- Cross- Spain 494 (21.9% BC; 20.2% NR M = 53.96 52% Primary= 55.5% 76.9% Diagnosis 012+ PCL-C score HADS anxiety, PCL-C >= 44; 10.1%
Requena sectional gastrointestinal SD = 11.78 HS grad = 38% months >= 44 depression - HADS
2010 tumor; 20.6% total; PTSD and
University = 5.9%
respiratory) MOS-SF-36 for
QoL
DuHamel, RCT 47 subjects; 34 AA = 4.3%, M = 52.19 40.4% 21% HS or less; 69% HSCT 1338 mos PTSD (CAPS), BSI distress & PCL-C; CAPS; BSI Not directly
2010 controls (14 = White = 82%, SD = 10.5 in CBT college grad 59% PCL-C depression reported
Non-Hodgkins Hispanic = 15.2%, 64.7% in
lymphoma, 8 = West Indian = assessment
Hodgkins 5.9%, Other = only
lymphoma, 15 = 9.3%)
acute/chronic
myeloid leukemia,
4 = acute/chronic
lymphoid leukemia,
9 = myelodysplastic
or.myeloproliferative
disease, 21 =
multiple myeloma
or amyloidosis, 1 =
other, 9 = missing

(continued)
Table42.1(Continued)

Study Characteristics Sample Characteristics Trauma Characteristics Findings

Author, Type of Study Location Sample (Size, CA Ethnicity Age % Female Years of % Married/ Postulated Time since Endpoints PTSD Non-PTSD Instruments PTSD
Date Typed) Education Partner Traumatic Exposure Endpoints Prevalence
Exposure

Elkit 2011 Longitudinal Denmark 64 (breast ca) White = 100% M = 56.3 SD 100% M =12 years SD = 77% Diagnosis 13 months HTQ (Harvard TSC (Trauma HTQ >= 3; 13%
(prospective = 9.1 3.7 (725 years) Trauma Symptom TSC (includes
follow Questionnaire) Checklist) - neg affectivity
-up) negative affectivity subscale)
subscale (relevant
to DSM-5)
Defense Style
Questionnaire-
DSQ-Q

Gold 2012 Cross- US 289 (85% from VA White = 60%, not M = 61.3 SD 15% M =13 SD = 2.8 42% Diagnosis 33 months PCL-C >=, 3 and Karnofsky mood PCL-C >= 3, 27%
sectional med centers, most specified = 40% =11.6 (SD 47.3) DSM cluster disturbance and cluster
have lung cancer) distribution QoL. partial = 2/3
sx clusters

Goncalves Longitudinal UK 121 (ovarian cancer) NR M =61 SD 100% Cannot interpret; 64% Diagnosis 0; 68 weeks; PTSD (PDS) PDS 36%45% at
2010 =12 or No exam = 46% 15 weeks; 27 some point over
< 16 years (23%) 18 weeks 5.5 month study;
years + (29%) 13% persisting
over the entire
5.5 months
Graca 2011 Cross- sectional Portugal *141 (abstract says NR NR 33% HS grad |pts) =22% Diagnosis 6 mos > 1 IES-R >,= 33 HADS, BDI IES-R >= 33, BDI, Cannot interpret
114; text says 141); 67 HS grad (partners) year (self- report) HADS tables
partners (colorectal = 6%
cancer)

Kangas 2013 RCT Australia 35 HNC NR 54.8 (range 20% NR NR Diagnosis 0; 1 mo; 6 SCID (multiple Beck-D-STAT, PTCI, SCID, PCL-S, BDI 14% before
1870) mos others) PCL-S FACT-G intervention
Keuroghlian Cross- sectional US 124 (breast stage IV)) non-Hispanic M = 53.1 SD 100% M =16 SD = 2.6 56.45% Met dx 22 mos; SD 29 IES POMS, CESD, HIP IES Not directly
2010 (BL of larger Caucasian = =10.6 reported
RCT) 87.1%;
not specified 13%

Kohno 2010 Cross- sectional Japan 47 (GI) NR M = 67.6 SD 31.9% NR NR Surgery NR IES-R IES-R; HADS Not directly
= 9.4 reported

Lindgren Cross- sectional US 210 (174 = BC, 36 = White = 84.8%; M = 55.98 100% Some college 64.8% Diagnosis 13 mos IES Charlson IES, BAI Not reported
2013 colorectal)) Black = 11.9%; 5D = 12.94 68.6% Index- comorbid
Asian = 1.9%; conditions; CESD-
Native depression, BECK
American = 0.5%; Anxiety Inventory
Latino = n = 4?;
Other =1%
Mehnert Cross- sectional Germany 1083 (BC) NR M = 61.8 SD 100% H5+=17.2% Married or Diagnosis 47 mos (avg) PCL-C >= 3, at PCL-C >= 3, DSM 12%
2009 = 9.8 partnered = +17.5 correct cluster cluster
66.9% distribution

Mehnert Cross- sectional Germany 511 (PC) NR Germany Germany Germany Germany Surgery 27 mos PCL-C PCL-C, DSM 4.3%
2010 (0.5-141 mos) cluster
Mystakidou Cross- sectional Greece 94 (17 = GI, 17 = NR M = 63.4 SD 51% M = 9.66 SD = 4.12 90% Urogenital, NR IES-R-G 24.9% anxiety or IES-R-G Not directly
2011 Lung, 33= Urogenital, =12 GI & lung, severe anxiety on reported
12 = BC, 13 = Other) breast cancer, HADS-Anxiety
other
Mystakidou Cross- sectional Greece 195 (52 = 143 =) NR M = 64.4 SD NR M = 7.51 SD = 4.7 91.3% Diagnosis NR SCID SCID 87.2%
2012 =12

OConnor Longitudinal Denmark 3343 (68% = BC) NR range = 10096 HS grad: 39.4% 76% Surgery 3 mos, 15 mos IES >= 35 IES >= 35 T1 20.1%
2011 (Prospective) 26-70 (upper 2nd): T2 14.3%
1317/3343 (39.4%)
Palgi 2011 Cross- sectional Israel 123 (gastric ca) NR M = 57.4 43% NR 81.3% Diagnosis 13.28 mos (SD PCL-C >=.44 Short center for PCL-C >= 44 Overall = 27.6%;
18.73) epidemiologic Stage 1,2 =
studies Depression 14.7%; Stage 3,4
Scale (SCESD) = 85%

Purnell 2011 RCT US 329 (PC) African M = 66 SD 0% HS grad and less = 84% Diagnosis Only time IES >= 27 (PTSD POMS non AA - IES >= 27 Baseline: 16%
American = 10%; = 8.3 35%; Some college since proxy) 13.7; 12.2% overall (34.5%
85% = white, 1% = 38%; College and enrollment AA; 13.7% other
= Hispanic, -.6 % grad = 28% reported ethnicities)
= Asian/Pacific 3 mos: 14%
Islander) overall (28%
AA; 12.8% other
ethnicities)
6 mos: 15%
overall (26%
AA; 14.1% other
ethnicities)
12 mos: 17%
overall (41%
AA; 14% other
ethnicities)
18 mos: 16%
overall (33%
AA; 14% other
ethnicities)
24 mos: 15%
overall (39%
AA; 12% other
ethnicities)

Ristvedt Longitudinal US 80 (rectal cancer) () Caucasian = NR 43.8% HS grad = 36. 2% NR Initial Time 1 after IES-R FACT - C = Q of L IES-R Not reported
2009 91%; African treatment initial tx, T2
American = 6%; (diagnosis = 25 years
Hispanic = 1% proxy) after T1

(continued)
Table42.1(Continued)

Study Characteristics Sample Characteristics Trauma Characteristics Findings

Author, Type of Study Location Sample (Size, CA Ethnicity Age % Female Years of % Married/ Postulated Time since Endpoints PTSD Non-PTSD Instruments PTSD
Date Typed) Education Partner Traumatic Exposure Endpoints Prevalence
Exposure

Rodin 2013 Cross- sectional Canada 205 (leukemia) White = 66%; 50.1 yrs 15 42% College/university 71% Diagnosis, < 1 mo (ASD) Stanford Acute ASD SASRQ, CARES 27% PTSD
other not =72.5% chemo- Stress Reaction Medical 14% ASD
reported therapy Questionnaire Interaction
>= 40 Subscale,
Memorial
Symptom
Assessment
Scale, Cognitive
Functioning,
Physical-
Kamofsky,
Treatment
Intensity, Beck
Hopelessness,
Spiritual
Well-being,
Self-esteem,
Attachment
security

Salsman Longitudinal US 55 (colorectal) White = 98.2%; M = 65.9 SD 59.04 Some college = 62.5% Diagnosis 13 mos (618 IES PCL-C PTG, MHI IES, PCL-C, Not reported
2009 other not =12.7 52.7% (colon mos) Ruminatin Scale
reported cancer)

Shim 2012 Cross- sectional Korea 400 (mostly lung) NR M = 51.2 SD 59% HS grad = 40% 85.5% Diagnosis 060+ mos IES-R, Korean Suicidality with IES-R >= 22 Not reported
=11.58 (158) <HS = mini suicide
107/391 (27.4%) module HADS
- anxiety &
depression
Smith 2011 Cross- sectional US 830 (NHL) AA = 10%; M = 62.8 SD 50% < HS = 27.8% 74.6% Diagnosis 10.4 yrs, PCL-C PTG+ QoL, PCL-C Not directly
Hispanic = 1.6% = 13.3 College grad = SD 7.3 FACT 6, Medical reported
Caucasian = 40.1% Outcomes Study
86.5% Social Support
Survey; Appraisal
of life threat
and Treatment
Intensity
Questionnaire
Smith Longitudinal US 566 (NHL, shared White = 87% M = 624 SD 52% College grad = 80.4,6 Diagnosis 12.9 years PLC-C>=44 Assess comorbidity PCL-C >= 44 7%
2011 b with Smith 2008, other not = 12.4 43.6% (PTSD) - Self Administered
2011 reported Questionnaire
(SCQ), Charlson
Ind.; MOS- SOSS
(Medical Outcome
Study Social
Support Survey)

Varela 2013 Cross- sectional US 105 HL survivors 101 White = 98.5%; 43 (HL) 42 50% HS grad = 92.3% NR Diagnosis 16 years Post-Traumatic Partial PTSD = PDS Patients 13%
siblings other not (sibs) Post HS =92.3% (734) Diagnostic Al and 2 of 3 sx Sibs 6.9%
reported Scale PDS (84% clusters
sensitivity, 75%
specificity for
PTSD)

Voigtman Cross- sectional Germany 287 (164 malignant NR M =58.7 SD 51% HS grad =16.7% 68.6% Radiotherapy 26 months PTSS-10, 99 HADS-D anxiety, PTSS-10; HADS-D 22%
2010 disorder; 68 = 13.4 10-yr certificate after cutoff depression, 28%
benign disorder; 55 or not clear conventional anxiety, 26%
malignant or benign) College = 13.6% radiotherapy depression
330 Section VII psychiatric disorders

both PTSD and risk factors should be incorporated into routine
distress screening across the cancer trajectory, with suggestive
results followed by more thorough clinical evaluation.
DIAGNOSIS
Both DSM-IV and DSM-5 define PTSD as a set of significantly
distressing symptoms persisting for at least 30days, which can-
not be explained by the direct effects of substance use or medical
conditions. Both require direct or indirect exposure to an event
that is fatal, life-threatening, or that causes serious injury or
threat to the bodily integrity of the person. Significant differences
do exist, however, between the older and updated diagnostic cri-
teria, and these differences may prove to be particularly relevant
in the cancer setting. Major similarities and differences between
DSM-IV-TR 23and DSM-5 criteria3 are summarized in Table 42.2,
along with some special considerations in applying the PTSD
model to the cancer setting.

Table42.2 Diagnostic Criteria For Post-Traumatic Stress Disorder Following Cancer in Accordance With DSM-IV and DSM-5 Guidelines
andConceptual Considerations

DSM-IV DSM-5 Special Considerations

A-Traumatic Event A-Traumatic Event
Objective (direct or indirect) exposure to actual or threatened Objective (direct or indirect)
death or serious injury and subjective response to the traumatic exposure to a traumatic event
event
B-Re-experiencing (at least one) B-Re-experiencing
(at least one)
1. Adults:Intrusive and recurring distressing recollections of 1. Similar
ones cancer experience that includes intrusive thoughts or
images.
Children:This symptom may be elicited as themes or aspects of
ones cancer experience expressed in the form of repetitive play.
2. Adults:Distressing recurrent bad dreams about the cancer 2. Similar
experience.
Children:May experience frightening dreams in which the
content is not articulated or recognized as pertaining to ones
cancer experience
3. Adults:Individuals may experience a dissociative fl ash back 3. Similar
episode (ranging from a few seconds u p to several days)
during which time they feel or act as if components of the
cancer experience were happening again
Children:This symptom may be elicited by reenacting aspects of
cancer experience (e.g., during play)
4. Distress as a result of internal cues (e.g., bodily symptoms) or 4. Similar
external cues (e.g., oncology ward, cancer advertisements)
that are reminiscent of an aspect of the cancer experience.
5. Physiological symptoms (e.g., increased heart rate/ 5. Similar
palpitations, rapid breathing, sweating) occurring in response
to exposure to internal cues (e.g., bodily symptoms) or
external cues (e.g., oncology ward, cancer advertisements)
reminiscent of the traumatic experience.
Subjective response is no longer included in DSM-5.
Cancer as a traumatic stressor is a potentially protracted
and multifaceted stressful experience. The stressor may
be triggered by being informed of the diagnosis, or may
occur in response to the disease and/or treatment side
effects, complications, disfigurements, or dysfunctions,
or other aversive medical experiences related to being
treated for cancer
Direct traumatization:For individuals who are actually
diagnosed with a malignancy. Being diagnosed with a
cancer is potentially life-threatening, although the threat
is in the future. However, the threat to ones physical
integrity may be more immediate due to disease and/or
treatment side effects.
Indirect/vicarious traumatization:For individuals who are
informed that their child, or partner/spouse, or other family
member is diagnosed with cancer.
Focuses on recall, requiring diagnosis at least 30days
previously.
For individuals to meet Criterion B3, they must report
experiencing flashbacks of cancer-related experiences; that
is, they report acting or feeling as though an aspect of their
cancer experience which has already occurred were about
to happen again, even though it was not (e.g., reliving when
they were notified of their own or family members cancer
diagnosis, or aspects of their cancer treatment).
This can be especially important in the cancer setting, in
which numerous and repeated scans or treatments can
provide triggering stimuli that are difficult to avoid, especially
during acute medical treatment.
(continued)
Table42.2(Continued)
DSM-IV
C-Avoidance (at least three)
Persistent avoidance of external or internal cues related to
cancer experience and/or numbing of responsiveness to this
experience, which is expressed by a minimum of three of the
following seven symptoms:
1. Regular, conscious efforts are made to avoid thoughts,
feelings, or conversations that remind the individual of the
cancer experience
2. Regular, conscious efforts are made to avoid situations,
events, places, or people who remind the individual of the
cancer experience
3. Inability to remember an important aspect of the cancer
experience
4. Adults:Emotional numbing and/or a decline in
responsiveness to the external world as evidenced by a
substantial diminished interest or participation in activities
previously enjoyed
Children:May not necessarily report withdrawal from activities;
hence, this symptom could be verified by paternal or teacher
reports
5. Feeling alienated or detached from other people
6. Substantial decline in emotional affectivity, particularly
related to intimacy, tenderness, and sexuality
7. (Unrealistic) perception of a foreshortened future
D-Hyperarousal (at least two)
Persistent symptoms of physiological arousal and/or anxiety that
was not present before the cancer
1. Sleep disturbances that may include difficulty falling or
staying asleep (and may be due to nightmares related to
cancer)
2. Feeling irritable or experiencing anger outbursts/loss of
temper
3. Concentration difficulties
4. Hypervigilant; markedly increased awareness of external or
internal stimuli due to increased concerns about danger
5. Exaggerated physiological, startle response (e.g., jumpy or
easily startled by noises or movements). Children:In addition
or in place of other Criterion D symptoms a child may report
stomach pains and/or headaches which were not present
before ones cancer experience
DSM-5
C-Avoidance (at least one)
Only one symptom required.
1. Similar
2. Similar
Moved to Criterion D1
Similar to elements of Criterion D Cancer patients undergoing medical treatment and/or
symptoms (e.g., loss of energy/fatigue). In such instances, careful
Moved to Criterion D6
Similar to Criterion D7
D-Negative Cognitions
(atleast two)
Moved to E6 in DSM-5
Similar to DSM-5 E1.
Moved to DSM-5 E5.
Moved to DSM-5 E3.
Moved to DSM-5 E4.
1. Inability to remember
important aspects of
traumatic event.
Special Considerations
It may be very difficult to avoid internal symptoms (i.e.,
somatic side effects due to the cancer itself and/or medical
treatments) and external cancer-related cues (e.g., medical
stimuli including daily or regular hospital visits). Avoidance
may cause delays in seeking care or worsened adherence to
treatment.
Even patients who do not avoid treatments may avoid
conversations or reflections related to cancer.
May include for instance cancer-related marketing or
television programming.
This symptom is not directly due to somatic side effects (e.g.,
concentration difficulties). Rather, the individual diagnosed
with the cancer reports amnesic symptoms related to an
aspect of the cancer experience (e.g., cannot recall the day of
diagnosis), due to heightened emotional distress.
recovering from acute treatment side effects may experience a
diminished interest in engaging in regular social and recreational
activities they previously enjoyed doing due to somatic
consideration needs to be taken in determining whether a
person satisfies this criterion due to emotional reactivity or
primarily due to somatic disease and/or treatment side effects,
which by themselves would not satisfy this criterion.
Can be complicated by body changes associated with cancer
treatments.
This perception is often realistic in cancer patients with poor
prognosis
For cancer patients, DSM-IV Criterion D needs to be
differentiated from pure somatic cancer-related side effects.
Must be distinguished from pain or other medical causes of
sleeplessness.
Must be distinguished from direct effects of cancer treatments
(e.g. steroids) or indirect effect of pain or other symptoms.
Cancer patients may exhibit more internal hypervigilant
symptoms (e.g., being hypersensitive to changes in bodily
symptoms such as skin texture or lumps, which may be
evidenced by ritualized scanning of body) than external
stimuli. However, individuals may also report heightened
awareness of externally perceived threats. In the context of
cancer, individuals may be externally hypervigilant toward
stimuli that are perceived to pose medical/health-related
threats (e.g., sitting near someone who is physically unwell)
Similar to Criterion C3 in DSM IV.
(continued)
332 Section VII psychiatric disorders

Table42.2(Continued)

DSM-IV DSM-5 Special Considerations

D-Hyperarousal (at least two) D-Negative Cognitions
(at least two)
2. Persistent, exaggerated No DSM IV equivalent
negative beliefs about oneself, Nothing in the world makes sense. Everything is wrong.
others, or the world.
3. Persistent distorted beliefs No DSM-IV equivalent
about the traumatic event May lead to guilt and a sense of responsibility for the cancer
that leads to blaming self or itself, cancer in family members, or the limitations of illness.
others.
4. Persistent negative emotional No DSM-IV equivalent
states (fear, horror, anger, guilt,
shame)
5. Markedly diminished interest No DSM-IV equivalent
in activities.
6. Feelings of detachment or DSM IV C5
estrangement from others.
7. Persistent inability to I cant even feel relieved that they said my last scan looked
experience positive emotions good.
E- Time Course E- Hyperarousal
Duration more than one month Duration moved to DSM-5 F Duration more than one month in DSM-IV and DSM-5
1. Irritable behavior and Similar to DSM-IV D2
unprovoked angry outbursts
(verbal or physical aggression
toward people or objects)
2. Reckless or self-destructive No DSM-IV equivalent
behavior.
3. Hypervigilance DSM-IV D4
4. Exaggerated startle response DSM-IV D5
5. Concentration difficulties DSM IV D3
6. Sleep disturbance DSM IV D1
Additional Criteria:Duration, Impairment, Substance Exclusion
Both DSM-IV and DSM-5 require that symptoms have persisted for at least a month, and that they cause clinically significant distress or impairment in social,
occupational, or other important areas of functioning. The symptoms must not result from the direct effect of substance use or medical conditions.

Abbreviation:PTSD=post-traumatic stress disorder.

aPTSD DSM-IV and DSM-IV-TR guidelines are comparable.

DSM-IV sufficient to meet criteria for PTSD as conceptualized in DSM-IV.

In DSM-IV, PTSD is classified as an anxiety disorder, and can be
conceptualized as a stress-response syndrome following exposure
to a traumatic event.32 Aqualifying event is specified in Criterion
Aof the DSM-IV. The number and types of potential traumatic
events that could precipitate PTSD were expanded in DSM-IV
to include life-threatening illness.33 The mode of traumatiza-
tion was also broadened in DSM-IV to include individuals who
witnessed or confronted the traumatic event. In particular, the
DSM-IV PTSD guidelines explicitly include learning that ones
child has a life-threatening disease as an event that could precipi-
tate a response warranting a PTSD diagnosis.2 More broadly, indi-
rect or vicarious traumatization resulting in PTSD may also occur
for persons who are family members or close friends of trauma
survivors, including partners, siblings, and relatives of cancer
patients. However, direct or indirect exposure to cancer is not
This is because Criterion A, which requires exposure to the trau-
matic event, also requires that individuals must report experienc-
ing intense fear, helplessness or horror in response to the direct
or vicarious trauma.2,23
PTSD Criteria B, C, and D represent the three main symp-
tom clusters for PTSD in DSM-IV: re-experiencing (Criterion
B), avoidance and numbing (Criterion C), and hyperarousal
(Criterion D). Criterion B requires only one of five possible types
of re-experiencing symptoms (B1B5).
Criterion D requires two out of a potential five symptoms
reflecting elevated physiological arousal. Three of these symp-
toms (D1D3) may require special attention in the case of
cancer patients during or soon after completing medical treat-
ment. Sleep difficulties, irritability, and concentration deficits
are common side effects resulting from malignant disease or its

medical treatment and may not represent a traumatic response.
In non-medical trauma, hypervigilance (D4) is expressed in
terms of heightened awareness of external, potentially danger-
ous trauma-related cues, but cancer patients and survivors may
be more hypervigilant to somatic changes (pain, altered skin
texture, or appearance) that might be connected to cancer recur-
rence or tumor progression.10,5
The most extensive criterion in DSM-IV is Criterion C, which
requires at least three of seven symptoms of avoidance and emo-
tional numbing (C1C7). For individuals traumatized by cancer,
four of the seven symptoms (i.e., C1C3, C7) may be problematic.
Loss of memory for portions of the traumatic diagnosis (C3) may
be due to neurological involvement, intense fatigue, or effects of
radiation or other treatment rather than dissociation. A sense
of foreshortened future (Criterion C7) may be realistic in a can-
cer patient.5 However, symptoms of avoidance may be the most
clinically significant aspects of post-traumatic stress disorder.
Although the nature of cancer treatment makes it difficult for
patients to avoid internal and external cancer-related cues (C1
and C2), more severely traumatized patients may in fact avoid the
clinic, delaying appointments, taking medications irregularly, or
skipping treatments, with potentially significant medical conse-
quences (see Case 1).
Case 1
Presentation: A 48-year-old married Latina patient presented to
a large cancer center more than nine months after discontinuing
recommended treatment in another state, where she had been
diagnosed with locally invasive carcinoma of the left breast and
underwent a partial course of chemotherapy. She had radical
mastectomy and reconstruction and subsequently was referred
for radiation treatment. The psychiatry service was asked to see
the patient to rule out non-epileptogenic seizure after she had
required repeated evaluations in the Urgent Care Center for epi-
sodes of staring and unresponsiveness in the radiation clinic.
Neurological investigation, including EEG and repeated head
imaging, had been unrevealing. The patient became tearful dur-
ing her first visit with psychiatry, reporting significant distress
as well as recurrent nightmares about both her cancer diagnosis
and traumatic childhood experiences, including multiple ciga-
rette burns to her arms and chest. The patients husband noted
that since her cancer diagnosis, the patient had been subject to fre-
quent angry outbursts, and the patient reported that she was eas-
ily startled by loud noises and other signifiers of danger in the
environment. She reported avoiding reminders of cancer, includ-
ing television programs, and reminders of childhood experiences,
including men who look a certain way, and frequently missed or
delayed oncology and medical appointments. The patient reported
that she was addicted to methamphetamines, but had been
sober for three years, and Narcotics Anonymous meetings were
an important support for both her and her husband.
Course of illness: PTSD with episodes of dissociation was sus-
pected. The treatment included anxiolytic medication, education
about PTSD, and frequent psychiatry visits focusing on grounding
exercises, which were taught to the patient along with her hus-
band, who often acted as a guide for the patient when she became
acutely symptomatic. Staff in the radiation clinic was also edu-
cated, and the schedule of the patients treatments was altered in
Chapter42 post-traumatic stress disorder 333
order to allow her to be accompanied by her husband or a trusted
staff member familiar with her condition and with grounding
exercises. By the final week of the patients course of radiation,
she was able to attend the clinic on her own and reported a strong
sense of accomplishment. Unfortunately, the patients cancer
recurred within several months, but she did continue with psychi-
atric treatment and adhered to oncology recommendations until
no further active treatment was proposed, when she returned to
her home state to live her final months with her family.
Discussion: This is a patient with multiple risk factors, includ-
ing ethnicity, history of substance use, and past trauma, whose
cancer diagnosis seemed to trigger traumatic responses, including
avoidance of medical settings and cancer treatment. She became
acutely and dramatically symptomatic when burns associated
with radiation treatment triggered recollections of childhood
abuse. Structured exposure-based treatment was not chosen in
the acute setting, and instead treatment focused on immediate
symptoms and management of dissociation and the establish-
ment of a sense of safety that would allow the patient to continue
with her demanding treatment. It could never be known if the
nine-month interruption in the patients treatment shortened her
life, but it does seem likely that earlier identification of trauma in
this vulnerable patient could have improved both the continuity
of her care and the quality of the final years of her life.
The diagnostic criteria of PTSD also require that symptoms
must be present for at least one month following the traumatic
exposure (Criterion E). As a result, cancer-related PTSD could be
identified no earlier than one month after cancer diagnosis. The
sixth and final Criterion, Criterion F, requires that the symptoms
be associated with clinically significant distress or impairment.
Table 42.3 summarizes the differential diagnosis for
post-traumatic stress disorder within the DSM-IV model that
conceptualizes it as an anxiety disorder. As noted above, PTSD
may often be accompanied by other primary or secondary psy-
chological conditions that are common in cancer, especially major
depressive disorder.34
DSM-5
In the 2013 edition of the Diagnostic and Statistical Manual of
Mental Disorders, PTSD is removed from the anxiety disor-
ders, being reconceptualized in a separate category of trauma-
and stressor-related disorders along with adjustment disorders
and attachment disorders. This category is understood as being
closely related to but distinct from those of dissociative disorders
and anxiety disorders. Although PTSD in DSM-5 remains a com-
plex set of symptoms persisting for at least 30days that causes
significant impairment or distress, and many criteria from pre-
vious editions of the DSM were retained, significant differences
do exist (see Table 42.2). Diagnosis of post-traumatic stress dis-
order in DSM-5 requires exposure to a traumatic event, which is
defined in essentially the same way as in DSM-IV. However, the
requirement that the traumatic event be received with a subjec-
tive sense of fear, helplessness, or horror has been eliminated. 23
In the cancer setting, this change may be particularly important
because the intensity of the subjective fear response is critical to
understanding fear of cancer progression or recurrence, which
can cause significant distress even years after active cancer treat-
ment. Although avoidance criteria are the most stringent in
334 Section VII psychiatric disorders

Table42.3 Differential Diagnostic Considerations in the Assessment of Cancer-Related PTSD

DSM-IV-TR Axis IDisorders Differential Diagnostic Issues

1. Acute stress disorder (ASD) If less than 4 weeks following cancer diagnosis, assess diagnostic criteria for ASD. For the most part, the ASD criteria are
similar to the PTSD criteria, with the exception that the ASD criteria have a heavy emphasis on dissociative symptoms.
2. Adjustment disorder Consider adjustment disorder in the following instances:
(a) The individual does not meet full diagnostic criteria for PTSD, particularly not meeting DSM IV Criterion A2; or if
PTSD Criterion A2 is satisfied, the individual does not meet criteria for one of the three PTSD symptom clusters
(i.e., B, C, or D).
(b) Reported stress symptom profile does not meet diagnostic criteria for any other anxiety, depressive, or Axis
Idisorder,and the stress symptoms occur within 3months following onset of the cancer stressor (i.e., within
3months following cancer diagnosis).
3. Major depressive disorder (MDD) Consider MDD if the individual reports a substantial and sustained decline in mood or disengaging from previously
enjoyed activities due to low affect following cancer diagnosis (or diagnosis of family member).
MDD may also occur along with or secondary to a diagnosis of cancer-related PTSD.
4. Anxiety disorders: Consider other anxiety disorders; stress symptoms may be better accounted for by a nontrauma anxiety disorder.
(a) Panic disorder Other Axis Ianxiety disorders may also occur concurrent with or secondary to a diagnosis of cancer-related PTSD.
(b) Agoraphobia
(c) Social phobia
(d) Specific phobia
6. Substance-related disorders Substance-related disorders are commonly associated with PTSD in civilian and veteran populations. Therefore it is
important to assess for primary or comorbid substance disorders when screening for cancer-related PTSD, particularly
incancer populations that may be more prone to substance-related disturbances before their cancer diagnosis
(e.g.,headand neck, and lung cancer).
Abbreviation:PTSD=post-traumatic stress disorder.

PTSD diagnosis in DSM-IV, as discussed above, avoidant symp-
toms are de-emphasized in DSM-5, which requires only one
symptom in this category. DSM-5 also adds a largely new clus-
ter of symptoms, Criterion D:Negative Cognitions. In order to
qualify for the updated diagnosis, the patient must meet most
of the symptom requirements of DSM-IV with the exception of
the requirement for subjective response to the traumatic event
and the reduction in the number of qualifying avoidant symp-
toms, and must also report at least two of seven symptoms in a
new cluster, most of which are not represented in the DSM-IV.
These include the inability to remember an important aspect of
the traumatic event; persistent and exaggerated negative beliefs
about the world, others, or oneself; persistent distorted beliefs
that lead to blame of self or others for the traumatic event; per-
sistent negative emotional states, including fear, anger, guilt, and
shame; diminished interest in activities; feelings of detachment
or estrangement from others; and persistent inability to experi-
ence positive emotions.3
The implications of these changes in the cancer setting are not
yet clear. As suggested by Case 1, avoidance is potentially the
most clinically significant set of symptoms for cancer patients
because of its possible effect on adherence to treatment in a small
subset of highly traumatized patients, and it is possible that the
DSM-5 criteria may miss some patients with the most clinically
relevant trauma. However, many cancer patients respond to the
unpredictable nature of cancer diagnosis, and to their own fear
that important aspects of life might be inexplicable or arbitrary, by
blaming themselves for their cancer, or by developing catastrophic
and negative beliefs about themselves and the world, and these
patterns cause significant distress. The addition of Criterion D
in DSM-5, which for the first time includes such distorted cogni-
tions, might capture many significant elements of patients experi-
ence with cancer, and the clinical relevance of this diagnosis in the
cancer setting might be increased by this change.
The PTSD Model and Cancer
Inclusion or exclusion of subjective criteria might affect the
applicability of standard PTSD models to cancer. Practical issues
distinguishing psychologically derived hyperarousal from side
effects of treatments, and of distinguishing realistic from unreal-
istic expectations of a foreshortened future, have been discussed
above. As we have noted, avoidance, which may be the most clini-
cally relevant set of symptoms, seems to be de-emphasized in
the most recent Diagnostic and Statistical Manual. Regardless of
whether specific PTSD diagnostic categories adequately encom-
pass the most relevant experiences of cancer patients, however,
more basic conceptual questions complicate the understanding
of PTSD and cancer. Cancer is inherently different from other
non-medical traumatic events, including combat, serious motor
vehicle accidents, assaults, and natural disasters. 5 Whereas
non-medical traumas tend to be discrete, externally induced
events, the stressor causing cancer-related PTSD is initially an
internal event10 that induces a complex set of potentially pro-
tracted external experiences. PTSD in the setting of cancer can
become a multifaceted experience associated not only with the
diagnosis itself, but with ongoing medical treatments that might
be associated with various new complications, disfigurements,
and dysfunctions. 5 Indeed, although re-traumatization is com-
mon even in non-medical contexts, the concept of post-traumatic
stress itself implies that the genuinely threatening event is in the

past. Existing treatments for post-traumatic stress implicitly or
explicitly start with Judith Lewis Hermans theory that safety
must be established before more active treatments can begin. 35
However, a cancer diagnosis is generally not an immediate threat,
and almost never becomes a threat that is entirely past, but repre-
sents an ongoing threat that also requires participation in clini-
cal encounters that, through their inconvenience, expense, pain,
and discomfort, may repeatedly reinforce the significance of that
threat. Adiagnosis of PTSD requires a recollection or even a
flashback, which implies an erroneous conflation of past and
present. For the traumatic events most directly contemplated in
formal diagnostic literature, the fearful event can be stated in the
past tense (I could have died). In the case of cancer, this is rarely
the case (I am going to die, or It could come back at any time).
Cancer in effect causes exposure to traumatic stimuli without
safety, and this complicates not only the use of existing models
of treatment, but possibly the use of the diagnostic category of
PTSD itself.
INTERVENTION
The appropriate treatment of high-risk or symptomatic patients in
the oncology setting is an area in which more needs to be known.
In its current form, treatment, including medications and psycho-
therapies, largely resembles treatments in the general population.
Medication
Medication treatment for PTSD in the general population is rec-
ommended along with psychotherapy for the most symptomatic
patients or those with comorbidities, including depression or
anxiety disorders. Generally, medications for PTSD include anti-
depressants that can be supplemented by atypical antipsychotics
if further symptom control is needed. Medication choices may be
more limited in the cancer setting because of medication interac-
tions or side effects, and the potential for beneficial side effects (for
instance, increase in appetite) may be more likely to guide choices
in the oncology setting. Serotonin reuptake inhibitor (SRI) antide-
pressants are commonly used medications for PTSD both in the
general and oncology settings, and sertraline and paroxetine are
the only medications of any class approved for treatment of PTSD.
Serotonin norepinephrine reuptake inhibitor (SNRI) medications,
including venlafaxine, may also be helpful, and SNRI medication
or tricyclics may be useful for pain as well as PTSD. Mirtazapine is
an alpha 2 antagonist that can be helpful for nausea and appetite,
as well as insomnia and anxiety symptoms associated with PTSD.
Clonidine and prazosin have been used for nightmares in the gen-
eral population, though these may be precluded by some cancer
medication regimens. Benzodiazepines may be helpful for both
nausea and symptoms of PTSD. Anxiolytic antipsychotic medi-
cations (olanzapine, quetiapine, or risperidone) have the added
advantage in the cancer population of decreasing nausea and
increasing appetite as well as treating sleep disruption. Anumber
of common cancer treatments pose particular problems:various
antidepressants decrease the effective dose of the active metabolite
of tamoxifen, an endocrine treatment for breast cancer, and gen-
erally only citalopram, escitalopram, mirtazapine, or venlafaxine
are given in these cases; procarbazine is a chemotherapy agent
used for several cancers that can act as a monoamine oxidase
inhibitor and may precipitate a serotonin syndrome when used
Chapter42 post-traumatic stress disorder 335
with antidepressants; abiraterone is an agent used for advanced
prostate cancer that may increase the concentration and compli-
cate the dosing of numerous benzodiazepines, antidepressants,
and antipsychotic medications. Other specific contraindications
or cautions exist with various cancer treatments, and evaluation
of the patients entire medication list is especially important.
Psychotherapy
Although medications can be helpful and are often necessary
in the treatment of PTSD, the mainstay of treatment in the gen-
eral population is psychotherapy, and this may also be true for
symptomatic patients in the oncology setting. The literature on
psychotherapeutic interventions for PTSD in cancer was previ-
ously virtually nonexistent but has been growing slowly. Six stud-
ies published between 2008 and 2013 evaluate interventions in a
significant way, with five unique interventions described.3640,28
Continuation of this research examining clinical approaches to
the management of PTSD specifically in oncology will be espe-
cially important. It is not clear that treatments found effective
for other psychiatric diagnoses in the cancer setting would be
as effective for PTSD, and given the unique nature of cancer as a
stressor it is equally unclear that interventions developed for other
traumas would be fully applicable in the cancer setting. Given the
model of PTSD that postulates a trauma in the past, it is hardly
surprising that the intervention studies that do exist seem to focus
on patients who are no longer undergoing active cancer treat-
mentalthough, as discussed above, post-traumatic symptoms
during active treatment might have the greatest potential to affect
adherence and cancer outcomes.
Nonetheless, the existing research demonstrates that cognitive
behavioral therapy (CBT) has been effective in the cancer setting.
Components of CBT reported in the oncology literature generally
include psychoeducation about distress and PTSD after cancer,
breathing and relaxation training, imaginal and in vivo exposure
to cancer-related cues, cognitive restructuring, behavioral activ-
ity scheduling, enhancement of social support through training
in communication skills, relapse prevention, and generalizabil-
ity of skills. 39,40,41 As illustrated in Case 2, structured treat-
ments for PTSD in the cancer setting can reduce symptoms, with
learned skills that provide benefits that may persist even despite
re-traumatization associated with further or ongoing cancer
treatments. For example, DuHamel, Redd, and colleagues devel-
oped an intervention for hematopoietic stem cell transplantation
(HSCT) survivors based on the CBT treatment developed for mil-
itary veterans. 39,41 Initial study demonstrated sustained improve-
ment in formally diagnosed PTSD after a structured series of
in-person CBT interventions. In a further 2010 study of HSCT
survivors with PTSD symptoms or PTSD symptoms and distress,
DuHamel et al. found that their CBT intervention adapted for
administration over the telephone was associated with reduction
of illness-related PTSD symptoms, as well as less general distress
and fewer depressive symptoms among HSCT survivors relative
to similar patients in an assessment-only condition.39 One limita-
tion of this study was that the CBT intervention was not compared
with an active treatment condition. A recent study by Kangas
etal. with newly diagnosed head and neck cancer patients com-
pared CBT with non-directive supportive counseling and found
that both interventions reduced PTSD and anxiety symptoms.
336 Section VII psychiatric disorders
However, at 12-month follow-up, 67% of patients in the CBT pro-
gram no longer met thresholds for clinical or sub-clinical PTSD,
anxiety, and/or depression, whereas only 25% of patients in the
supportive group demonstrated such continued improvement.40
In addition, different types of CBT, cognitive-behavioral stress
management43,44 and mindfulness-based stress reduction, 38 have
been found to reduce symptoms of PTSD. However, not all ran-
domized clinical trials have found CBT-based interventions to
be beneficial for PTSD in the setting of cancer.45 The National
Center for PTSD calls attention to the work of Bryant, Harvey,
and their colleagues (1999, 2000), which highlights the subset of
patients including those with profound avoidance and dissocia-
tion for whom CBT may not be the most appropriate initial treat-
ment option, and there are some cautions about CBT treatments
within a month of trauma.46 The National Cancer Institutes
PDQ cancer information summary on PTSD reports a consensus
among clinicians for a multimodal approach modified to meet
the specific needs of the patient, including comorbid psychiatric
disorders.47 Finally, to the best of our knowledge, no randomized
clinical trails with cancer survivors have used the DSM-5 criteria
for PTSD.
Case 2
Presentation: A 40-year-old married Latino male who had expe-
rienced an earthquake and an assault decades earlier was iden-
tified in a research study as having PTSD symptoms and was
asked if he wanted to receive a trauma-focused intervention that
was being developed by DuHamel and colleagues,41 nearly three
years after undergoing allogeneic bone marrow transplant for
leukemia. He had reported to his therapist that he felt he was
going crazy. He reported that he had been having recurrent
nightmares about his transplant hospitalization, with flashbacks
of radiation treatment and physical symptoms, including chills
and sweating, triggered by stimuli reminiscent of his hospital-
ization, including off-white walls, the smell of vegetable soup
brought to him by a relative during his hospitalization, and pine
scent reminiscent of a skin lotion used in the hospital. His qual-
ity of life was significantly affected. We cant even have a real
Christmas tree anymore.
Course of illness:After formal evaluation, the patient was diag-
nosed with PTSD and was treated with 10 structured psychother-
apy sessions focusing on education about PTSD, relaxation, and in
vivo exposure, as well as systematic desensitization to traumatic
triggers through a series of graded exposures. After the treatment,
the patients symptoms were reduced, he no longer met criteria
for PTSD, and these effects persisted even after re-exposure dur-
ing subsequent medical hospitalizations. The patient was able
to engage more fully with his family and reported a significant
improvement in the quality of his life.
Discussion: This is a patient with previous exposure to
non-medical traumas but no other known risk factors who devel-
oped limiting PTSD symptoms that persisted even years after
hospitalization for bone marrow transplant. He received formal
treatment based on cognitive principles, focusing on long-term
management of triggers and negative cognitions. It is notable that
the patients gains persisted even when his health declined and he
was exposed to post-treatment traumas.
SUMMARY
Despite growing research, the prevalence of PTSD in the cancer set-
ting remains unknown, and seems wide-ranging. The conceptual-
ization of PTSD has changed in the fifth edition of the Diagnostic
and Statistical Manual, with a decreased emphasis on potentially
clinically relevant avoidance, but also with a new inclusion of
cognitive distortions of the type common in cancer patients. It
seems likely that PTSD, as newly conceptualized in the DSM-5,
will continue to be relevant in the oncology setting. Nevertheless,
the basic concept of PTSD still poses special challenges in the can-
cer setting. The idea of PTSD in general postulates a past trauma
and a present state of safety, and both the understanding of the
condition and the design of existing treatments start from these
premises. While it remains unclear whether the formal con-
cept of post-traumatic stress disorder should be modified in the
oncology setting, and the extent of post-traumatic stress disor-
der among cancer patients has not been precisely determined, it
is clear that in individual cases, trauma may decrease adherence
to cancer treatment. Appropriate medical response to a poten-
tially serious condition with unknown prevalence necessarily
focuses on risk factors and identifying populations of interest for
more careful screening or specialized intervention. However, the
cross-sectional design that still predominates in the literature on
trauma and cancer complicates the identification of possible pre-
dictors or risk factors for PTSD in this setting, and demographic
characteristics as well as aspects of medical history, including
relevant comorbidities, are often unreported. The reliance upon
cross-sectional research designs has also made it more difficult
to evaluate changes over time. Many studies have shown decreas-
ing prevalence of PTSD in cancer patients over time; however,
one study of racial disparity, discussed above, showed decreased
rates of PTSD over time for only some racial groups.48,28 This
highlights the ongoing need for more sophisticated study of the
complex interconnections between risk factors and longitudinal
course. Variability over time also complicates the ability to com-
pare current PTSD prevalence rates across studies because of the
wide variability in the reported time intervals since exposure.
Despite the limitations of PTSD as a category and the limitations
of the literature, it nonetheless remains true that the growing body
of research in oncology consistently suggests prevalence rates of
PTSD of 10%20%. Rates seem to be significantly higher (up to
40% or more) in some populations, including the very minority
groups that are least represented in the literature. PTSD associated
with cancer, in other words, seems to be a genuine phenomenon
that affects a significant minority of cancer patients and survivors
at some time after their diagnosis.
Interventions for PTSD in cancer patients generally include
both medications and psychotherapy, and most but not all of the
developing evidence supports the use of CBT approaches, which
may have more robust effects over time than supportive alterna-
tives, but which may be less appropriate for highly symptomatic
patients or those with a significant dissociative component to
their traumatic response.
FUTURE DIRECTIONS
Screening tools and self-reports may be necessary to gather infor-
mation from large numbers of subjects, particularly given the

variability of symptoms over time that makes repeated assessment
especially important in studying PTSD. However, the lack of con-
sensus about instruments and standard cutoff points for accept-
able sensitivity and specificity (and in some cases the omission
of information about cutoff points used) hampers the ability to
compare work and to draw conclusions that would be the basis of
future research. Automated dissemination of accepted screening
instruments might facilitate the development of such standards
while also making repeated assessments more practical. Without
such clear standards, it becomes even more important to regard
screening instruments as just that:preliminary measures that in
suggestive cases will be followed by the use of more detailed evalu-
ation for PTSD utilizing the shared criteria of a formal diagnostic
category.
Given the importance of risk factors, a more methodical
approach to gathering and reporting demographic data in stud-
ies of PTSD will be just as critical to the development of use-
ful knowledge as a more methodical approach to screening and
its reporting. The literature rarely includes information about
acute stress disorder, substance use, or prior trauma, only
rarely includes information about other psychiatric comorbidi-
ties, and often omits information about education and socio-
economic status; race is reported less than half the time. All of
these are believed to be risk factors in the general population,
and the high significance of race at least seems to be suggested
by the recent literature in oncology. The focus in the recent
decade on identifying cancer as a trauma sufficient to precipi-
tate PTSD has driven growth in the literature and interest in
the field. However, it seems likely that many of the patients who
are most symptomatic after cancer diagnosis may have been
exposed previously to non-medical traumas, and conceptual-
izing cancer not just as a possible independent trauma but also
as a trigger for existing or dormant traumatic responses may be
important both in guiding research and in identifying patients
who may be at highest risk. Arelated challenge that has not been
addressed in the literature is that of patients who are symptom-
atic during active treatment; current research focuses on later
interventions, and future strategies may be developed to meet
the needs of symptomatic patients who may be at the highest
risk of non-adherence.
Applying the concept of PTSD to oncology poses unique chal-
lenges, and existing treatments or the concept itself may have
to be refined in the cancer setting. Estimates of prevalence are
variable, and the inconsistent use of screening measures makes
the literature difficult to interpret. The recent change in formal
diagnostic criteria will make even the most methodical assess-
ments of PTSD harder to interpret during the time of transi-
tion from one set of criteria to another. Risk factors have been
under-represented in the literature, and racial disparities and
other social factors are not addressed. Nonetheless, the find-
ings that PTSD affects a significant minority of cancer patients
and that it is more common in the cancer setting than in the
general population do seem to be generally consistent, and these
facts have significant implications for research and treatment.
Patients affected by PTSD may suffer from significant distress
and impairment that may alter their ability to tolerate treatment.
For psycho-oncologists, the task is to devise more effective and
methodical ways of identifying at-risk or symptomatic popula-
tions, and to develop appropriate treatments that may improve
Chapter42 post-traumatic stress disorder 337
the quality of life or even improve adherence in these vulnerable
patients.
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 CHAPTER43

Somatic Symptom and

Related Disorders, Factitious
Illness, and Malingering in
the Oncology Setting
Ted Avi Gerstenblith, Lucy E.Hutner,
FeliciaA.Smith, and Theodore A.Stern

INTRODUCTION
Many individuals experience physical but medically unexplained
symptoms. When such symptoms become so severe that signifi-
cant distress and impairment in functioning develop, the patient
should be assessed for a somatic symptom or related disorder.
Since malignancies can contribute to myriad complaints, physi-
cians must identify somatic symptoms (e.g., pain, fatigue, anorexia,
dyspnea) that are out of proportion to what is expected in a patient
in order to assess for a somatic symptom disorder. Somatizing
patients account for up to 30% of outpatients,1 and they use twice
as much medical care (and account for twice as much cost) as their
non-somatizing counterparts.2 Moreover, those who somatize
function less well than do those with chronic medical illnesses. 3
The etiology of somatic symptom disorders is multifactorial,
involving biological, psychological, and social factors.
Psychiatrists who work in oncology clinics are likely to encoun-
ter patients with somatic symptom and related disorders because
these disorders are common, the patients present with physical
symptoms that mandate a full medical evaluation, the symptoms
become evident during times of stress (e.g., at the time of cancer
diagnosis), and these disorders are associated with psychiatric ill-
nesses (most often depression and anxiety). Treatment is focused
on avoiding unnecessary diagnostic tests, on fostering an alli-
ance with a primary provider, and on enhancing function despite
ongoing symptoms.
PRESENTING CLINICAL FEATURES
Several subtypes of somatic symptom and related disorders
are included in the Diagnostic and Statistical Manual of Mental
Disorders (5th edition; DSM-5).4 Somatic symptom disor-
der involves disproportionate thoughts, feelings, or behaviors
associated with somatic concerns that persist for more than six
months, to the point that the symptoms cause a significant disrup-
tion in ones daily life.
Case Study
A 55-year-old woman with a remote history of non-metastatic
breast cancer presented to her oncologist with a diffusely positive
review of systems and prominent anxiety, about which she was pre-
occupied. Her oncologist was concerned about missing an obscure
medical etiology. Review of the medical record revealed multiple
diagnostic workups for vague somatic complaints over the preceding
years, without an obvious physical cause. The oncologist embarked
upon a full medical evaluation and encouraged her to establish con-
sistent follow-up with her primary care provider.
The prevalence of somatic symptom disorder is likely to be higher
in women than in men since women report more somatic symp-
toms.5 The disorder emphasizes patients excessive and maladap-
tive experiences of, and responses to, symptoms, whether or not
they are medically explained. For instance, individuals may focus
on pain that may not have a clear medical basis, or, if it does, the
experience of pain may be out of proportion to what is expected.
In the oncology setting, pain may be related to the cancer itself
(though significantly more intense than expected) or a conse-
quence of treatment (e.g., surgery, radiation therapy). The psychia-
trist should be adept at deciding whether to use narcotics for relief
from pain or for psychological relief. This may be complicated
in the oncology setting, where use of narcotics is often justified.
Importantly, DSM-5 emphasizes that patients can have a medical
condition and a coexisting somatic symptom or related disorder
that is disproportionate to the severity of the condition. Patients
340 Section VII psychiatric disorders
can also have several comorbid psychiatric conditions (e.g., major
depression, substance dependence, a personality disorder).
Conversion Disorder
Conversion disorder (involving a loss or change in sensory or
motor function that is suggestive of a physical disorder but that
lacks evidence for a known condition) typically presents with
acute physical symptoms (most often neurological).4 Onset of
symptoms may occur in association with psychological or physi-
cal stress or trauma.
Case Study
A 32-year-old woman presented to her primary care physician with
the sensation that she had a lump in her throat. Her husband was
concerned that she might have cancer. However, rather blandly she
described that she hadnt been eating much because she thought she
would choke. Her doctor was aware that she was stressed by work
and suspected that the diagnosis was globus hystericus. Aworkup
to rule out organic causes was initiated.
Symptoms do not always correspond to known neuroanatomical
structures and may appear, and resolve, abruptly. Patients may fail
to feel alarmed despite severe symptoms (la belle indifference). As
with other somatic symptom and related disorders, conversion
symptoms may be superimposed on known medical conditions
(e.g., pseudo-seizures in the setting of a documented seizure dis-
order).6 Studies using functional brain imaging have implicated
the anterior cingulate gyrus, orbitofrontal cortex, striatum, thala-
mus, and the primary sensorimotor cortex7 in cases of conversion
disorder. Several medical/neurological conditions, such as mul-
tiple sclerosis, can present with an array of difficult-to-diagnose
symptoms, and it may take several years and recurrent presenta-
tions before the correct diagnosis is made.
Illness Anxiety Disorder
Illness anxiety disorder involves the preoccupation with the idea
that one has, or will acquire, a serious medical illness, despite
repeated evaluations and reassurances to the contrary.4 While
such patients neither create nor feign symptoms, they misat-
tribute trivial symptoms to serious causes. They worry about the
cause, meaning, or significance of having a disease; the belief that
one has cancer is common among afflicted individuals. Major life
stressors, threats to ones health, and a history of serious child-
hood medical illness and/or a history of abuse may serve as risk
factors for the development of this disorder. The diagnosis of ill-
ness anxiety disorder does not protect against the development of
a true medical illness. Physicians should be careful not to com-
pletely dismiss patients symptoms despite several unrevealing
evaluations. Moreover, the presence of a true medical illness, such
as cancer, and the anxiety that accompanies it often exacerbate
abnormal illness behavior among these individuals.
When an individual displays psychological behaviors or traits
that adversely affect the course or treatment of a medical condi-
tion, he or she should be evaluated for another somatic symptom
or related category called psychological factors affecting other med-
ical conditions.4 These qualities (e.g., relationship style, personal-
ity traits, coping styles) only constitute adverse effects through
their interaction with somatic illness.
Evaluation
History
Although the primary care physician or oncologist will in all
likelihood have already asked about medical symptoms (includ-
ing their pattern, quality, frequency, duration, and severity),
the psychiatrist can add to the history by attempting to redress
physical complaints with an ear tuned to the underlying affect,
while conducting a full psychiatric interview (including the his-
tory of psychiatric symptoms and any temporal relationship to
current physical symptoms). The consultant should also perform
a psychiatric review of systems, covering symptoms related to
affect, behavior, and cognition, as well as thoughts of suicide or
homicide. In addition, inquiry into a history of substance abuse,
trauma, suicide attempts, hospitalizations, medication trials, and
current treaters should be made.
Examination
The mental status examination is a detailed observation of a
patients behavior, speech, language, mood, affect, and cognition.
With patients who somatize, there is often a noticeable disconnec-
tion between the stated severity of the symptoms and the affect
displayed. The physical examination can also add important infor-
mation. Among the most important physical findings are those
that indicate frontal lobe dysfunction, as the frontal lobes govern
executive function (e.g., decision-making, planning, inhibition
of behavior). Tests that assess frontal lobe function (by assess-
ing for frontal release signs and performing go-no-go tests) are
brief and easily performed. Finally, the patients level of cognition
can be assessed with screening tests (e.g., the Mini-Mental State
Examination [MMSE] and the Montreal Cognitive Assessment
[MoCA]).8
Laboratory Tests
A typical battery of tests includes a complete blood count, a
metabolic panel, and levels of thyroid-stimulating hormone, B12,
folate, and rapid-plasma reagent. Specialized tests (e.g., an human
immunodeficiency syndrome [HIV] test, an electrocardiogram,
an electroencephalogram, a computed tomography or magnetic
resonance scan, cancer-specific studies, or lumbar puncture) may
also be appropriate.
Consultations
Results of objective (e.g., of cognitive function) and projective
neuropsychological testing may also prove useful. Examples of
cognitive screening include the 100-point MMSE (which follows a
format similar to that used by Folstein etal. 8 but with more exten-
sive questioning) and the Trails-making Test B (which assesses
frontal lobe function). Projective testing may provide a window
into the patients style of coping with physical complaints, insight,
and underlying psychiatric illnesses. Finally, it may be useful for
the psychiatric consultant to suggest that other services (e.g., neu-
rology) evaluate the patient, especially when symptoms are dif-
ficult to interpret.
Differential Diagnosis
Patients with somatic symptom and related disorders may or may
not have true medical illness. Therefore, a broad differential diag-
nosis for an acute medical illness must be considered, especially
for conditions (e.g., acute intermittent porphyria, HIV infection,
scleroderma, rheumatoid arthritis, multiple sclerosis) that affect

multiple organ systems or that produce variable presentations.
Psychological factors that affect medical illness (such as stress that
worsens post-chemotherapy nausea) should also be considered.
Factitious illness and malingering also may present with physi-
cal symptoms (in the absence of an organic basis), for primary
or secondary gain. However, in these conditions, symptoms are
consciously created (as opposed to being derived from the sub-
conscious, as in conversion disorder). Other psychiatric disorders
should be considered to determine whether the somatic symp-
tom presentation is better accounted for by another condition. In
particular, affective disorders, anxiety disorders, and psychotic
disorders can all involve somatic complaints. Depression and
anxiety are particularly common in patients with cancer. Another
important consideration is substance dependence disorder, which
commonly produces bodily complaints. Dissociative disorders,
characterized by disruptions in consciousness, identity, percep-
tion, or memory, can result in an inconsistent or vague history that
may fail to correlate with objective findings. Finally, it is impor-
tant to remember that cultural variations may alter the somatic
manifestations of psychiatric conditions,9 and the somatic symp-
tom and related disorders in general fit less well into cultures with
a more unified view of mind and body. The cultural background
of the physician may also influence how she or he interprets the
symptom presented.10
Management
A practical approach to somatic symptom and related disorders
involves the thorough evaluation of medical causes, the building
and maintenance of a treatment alliance, and the use of medica-
tions or psychotherapy for any comorbid conditions.
Evaluation of Medical Causes
All potential medical causes should be considered. This is particu-
larly true for patients who repeatedly seek care from their physi-
cians. Although it may be tempting to dismiss those with vague or
difficult-to-diagnose symptoms, occult diseases can occur among
those with persistent complaints and frequent requests for exami-
nations and treatment. Medical illness can serve as a nidus around
which somatization is built.11 However, a search for conditions
that are rarely diagnosed tempers the desire to order extensive
testing. Since procedures are associated with risks, one needs to
balance the investigation of a complaint with the potential risk of
the test itself, especially when the physicians reassurance about a
negative test result is unlikely to produce a sense of relief.
Alliance-Building
Throughout the medical evaluation, the physician should aim to
establish an effective alliance with the patient.12 Even when no
organic basis for complaints can be found, the patients suffering
may fail to improve. In some cases it is useful to tell the patient that
negative tests are reassuring and that the physician realizes that
symptoms may persist. An approach that combines the validation
of the patients point of view (including emotional aspects of their
situation in the discussion) and that emphasizes the connection
among biological, psychological, and social factors can be useful.
Little will be gained from direct confrontation of the patients
belief in his or her symptoms; moreover, such interventions
can be stigmatizing. However, much can be gained by displays
of confidence (saying that symptoms can improve, even if we
dont know their origin). Improvement in function should be
Chapter43 somatic symptom and related disorders 341
the goal of treatment. This is best done by a physician who can
see the patient for time-limited, regular appointments. Finally,
the persistence of the patients complaint can lead to the physi-
cians negative counter-transference reactions (e.g., as manifested
by hostility, contempt, and feelings that such patients waste the
physicians time and/or deplete his or her resources). Physicians
should remain cognizant of the patients suffering and use their
counter-transference reactions in the service of the patient.
Psychopharmacological/Psychotherapeutic Options
Medical management of somatizing patients can be helpful. For
example, a patient with major depression and concurrent pain may
benefit from a dual-acting antidepressant agent, such as a tricyclic
antidepressant (e.g., amitriptyline, clomipramine) or a selective
serotonin reuptake inhibitor (SSRI), which has been shown to
convey substantial benefits.13 However, is wise to avoid polyphar-
macy in somatizing patients who may become preoccupied with
adverse effects. In addition, narcotics should be avoided so that
additional problems (e.g., dependence, diversion, and the need for
further presentations for secondary gain) do not develop. Finally,
behavior-based therapies, for example cognitive-behavioral ther-
apy (CBT), can help patients address core beliefs around illness,
recognize cognitive distortions, change maladaptive coping strat-
egies, and limit excessive use of medical care.14
FACTITIOUS ILLNESS AND MALINGERING
Patients who deliberately manufacture or feign symptoms, as in
factitious illness or malingering, create a perplexing and frustrat-
ing situation for the physicians who care for them. Patients with
factitious illness create medical and/or psychiatric symptoms in
order to occupy the sick role (i.e., for primary gain).4 Malingering
is driven by secondary gain (typically a material reward, such as
disability payments).4 These disorders violate an implicit contract
of trust between doctor and patient, making them particularly
frustrating for the provider. Each case requires a complete medi-
cal and psychiatric evaluation. Simulated illness may occur in a
patient who has a true underlying medical illness (e.g., a patient
with chronic pain may also malinger to obtain opiates), and actual
self-inflicted injury can develop. Treatment includes ruling out
medical emergencies, offering psychiatric assistance, setting clear
boundaries, thoroughly documenting the assessment and treat-
ment, and managing the intense counter-transference reactions
that these patients elicit.
Presenting Clinical Features
Factitious Illness
Case Study
A 32-year-old woman presented to an outpatient oncology prac-
tice stating that due to her family history of cancer she wanted to
undergo a prophylactic double mastectomy and oophrectomy. She
cited a long list of cancers in her female relatives (including breast
cancer in her mother and both sisters, and ovarian cancer in her
maternal grandmother and another sister). She was unable to
provide any documentation to support this history and refused to
submit to genetic testing. When her mother was contacted, she said
that there was no such history of cancer in the family and that the
patient had a long history of generating false medical reports.
342 Section VII psychiatric disorders
Box 43.1 Selected Presentations of Factitious Illness
Cardiac:Acute chest pain
Pulmonary:Cyanosis
Vascular:Simulated aortic dissection
Hematologic:
Bleeding due to the injection of warfarin
Simulation of sickle cell crisis
Infectious:False reports of HIV(+) status
Toxic:Vomiting due to over-ingestion of ipecac
Metabolic:Hypoglycemia due to self-injection with insulin
Allergic:Factitious anaphylaxis to bee stings
Musculoskeletal:False reports of trauma
Pain:Chronic cervical spine pain
Presentations may include an inconsistent history, false laboratory
results, or self-injury.15 At times, the results can be life-threatening
(e.g., a patient who surreptitiously injects insulin and develops
profound hypoglycemia).16 Box 43.1 provides selected examples
from the literature. The literature describes several scenarios by
which factitious illness may present in the oncology setting (e.g.,
a patient who fabricates a personal or a family history of cancer
to receive mastectomy or chemotherapy).17 Patients have also
used electronic resources to create false documents regarding a
history of cancer.18 In addition, the deliberate creation of symp-
toms consistent with pheochromocytoma have been described
(including the use of vanilla extract to create a false positive test
result for vanillyl-mandelic acid).19 Patients may also present with
psychiatric complaints, such as delusions and hallucinations.20
Munchausen syndrome (named after Baron von Munchausen, an
eighteenth-century Prussian officer who traveled from inn to inn,
telling tall tales of his journeys), which is characterized by peregri-
nation, pseudologia phantastica (embellishment of tales regarding
symptoms), and feigning of illness, is a severe form of factitious
illness.20 Psychiatrists should also be aware that Munchausen syn-
drome can be imposed on another (formerly, by proxy), a condi-
tion in which a caregiver generates a factitious illness in another
individual.
Unfortunately, establishing the incidence of factitious ill-
ness is challenging, as the diagnosis is difficult to make, 21 and
physicians are often hesitant to document the diagnosis in the
medical record.22 The prototypical patient is young and female
(and may have had some training in healthcare), but has highly
variable demographics. 23 Such individuals tend to lead itinerant
lives with few close contacts. Their narratives contain detailed
medical terminology, which unravel under close examination;
they are often vague and evasive when asked direct questions.
They may have had an extensive history of medical examina-
tions, and may appear oddly eager to undergo painful or inva-
sive procedures. 20
Malingering
Case Study
A 47-year-old man with a history of heroin dependence and multiple
jail sentences for illicit drug dealing presented to his oncologist with
complaints of chest wall pain. He has a history of metastatic lung
cancer that has been unresponsive to surgery and chemotherapy.
His oncologist became concerned when the patient reported that he
had lost his opiate prescription on several occasions, and requested
a rapidly escalating dose. The oncologist felt caught between her
desire to treat his pain and her concern about the potential for drug
diversion or abuse.
Malingering is not a formal psychiatric diagnosis, but it can be
a common reason for psychiatric consultation, especially when
the patients complaint is inconsistent with a known medical or
psychiatric illness. Malingerers often provide a vague and unveri-
fiable history, may have an extensive legal history, and describe
symptoms that fail to correlate with objective findings. 20 Unlike
the patient with factitious illness, the malingerer may be uncoop-
erative with objective tests or invasive procedures and may leave
before such tests are conducted. There is a substantial overlap with
antisocial personality disorder (defined by a lack of empathy, by
lying, and by a flagrant disregard for social norms), as well as with
substance dependence.20
Evaluation
History
The psychiatrist should aim to gather as complete a medical and
psychiatric history from the patient as possible. Obtaining a his-
tory of substance dependence is critical (although it may be mini-
mized). History gathering may be difficult, as the patient may
present a diffusely positive review of systems; the interview may
be rich with language, but short on detail.
Examination
The patients mental status examination can provide crucial
data. For example, the patient may appear overly friendly in an
effort to engage the interviewer. Alternatively, he or she may
seem guarded, especially when certain topics (such as substance
dependence or legal involvement) are broached. The psychiatrist
may become internally aware of a growing mistrust and/or dislike
of the patient. Observing the patient when the patient does not
know that he or she is being observed can also prove valuable, as
the patient may unwittingly exhibit the factitious behavior (such
as heating up a thermometer to feign fever). In certain circum-
stances, a search of a patients belongings may be necessary.20
Laboratory Tests and Studies
In the case of factitious illness, spurious laboratory results may
provide a clue to the correct diagnosis. For example, a finding of
high serum insulin and a concurrent low C-peptide is diagnostic
of the exogenous use of insulin. Depending on the nature of the
complaint, other tests (e.g., HIV testing, computed tomography,
magnetic resonance imaging, or electroencephalography) can be
reasonable options. It can also be helpful for the psychiatrist to
refer patients for neuropsychological testing (e.g., the Personality

Assessment Inventory), although such individuals will be unlikely
to agree to it.24 Finally, it may be appropriate to ask for consulta-
tions from other disciplines (such as neurology), especially when
symptoms overlap with psychiatric manifestations.
Differential Diagnosis
Factitious illness and malingering are diagnoses of exclusion; an
extensive search for other causes is warranted. However, there is
often a complicated mix of motivations in these disorders, and
at times more than one may be apparent. Differentiating among
them (especially factitious illness from malingering) can be dif-
ficult. The psychiatrist should be careful to consider another psy-
chiatric disorder that could explain the presentation. Factitious
illness is most often linked with borderline personality disorder,
while malingering is more often seen in the context of an antiso-
cial personality disorder.14 Clinicians should also rule out a sub-
stance dependence disorder, especially in those with suspected
malingering. Clinicians should also consider how cultural aspects
of psychiatric illness influence their presentation.
Management
Rule Out and Treat Medical Illness
Although it may be tempting to dismiss cases in which factitious
illness or malingering is clearly present, it is crucial to identify and
treat self-injury, underlying prior disease, and/or occult illness in
a patient who repeatedly reports medical or psychiatric symptoms.
Psychiatric Treatment
For a patient with factitious illness, psychiatric assistance should
be offered. Ideally, the treatment would address dependency
needs and any underlying masochism (with pain and self-injury
as a reflection of their need for care).19 However, there has been
little success with interventions (e.g., group psychotherapy, CBT,
or psychodynamic psychotherapy).19 In addition, the psychia-
trist should be prepared for treatment refusal, as the patient may
feel intensely angry and humiliated. Leaving the hospital against
medical advice occurs frequently.19
The role of confrontation is debated in the literature. In a ret-
rospective case series of patients with factitious illness, 75% of
cases resulted in confrontation; however, only 17% of patients
acknowledged their problem.25 Some clinicians have advocated
a therapeutic confrontation with related offers of assistance.20
Others have emphasized that the doctor-patient alliance should
be promoted, even if direct confrontation does not occur. The psy-
chiatrist can also play a valuable role by helping to contain staffs
intense counter-transference reactions (which may include feel-
ings of hatred and contempt).20
Malingering is also difficult to treat, because the physician and
patient have different goals. Physicians dont like to think of their
patients as trying to create symptoms for personal gain, and they
may fear legal ramifications if the patient in fact has a true medical
illness. However, physicians enter into an unwitting collusion with
the patients agenda if they fail to consider the diagnosis. Optimal
management includes setting firm limits and clearly documenting
care. Since these disorders are abnormal illness behaviors rather
than disease entities, there is no indication for the use of psycho-
tropics or psychotherapy, and prescriptions for medications of
Chapter43 somatic symptom and related disorders 343
any type should be avoided. Comorbid conditions (e.g., substance
dependence) can be treated. However, the psychiatrist should be
prepared for rejection of offers of assistance.
Limit-Setting
In the case of suspected factitious illness or malingering, it is help-
ful to set limits and to provide clear expectations. Second, a behav-
ioral management plan can be beneficial for those who present for
care frequently. Psychiatrists should do their best to consolidate
care into one setting, so that all treaters can be aware of a patient
who is trying to obtain medications from multiple providers.
Careful Documentation
It is also important to clearly and thoroughly document care,
including the reason for the exclusion of medical or psychiatric
illness. Additionally, if the psychiatrist has been able to contact
collateral sources, this should be included in the notes as well.
Electronic medical records that link affiliated hospitals can serve
a useful function, fleshing out the patients narrative and course,
which can guide future management.
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 CHAPTER44
Cancer Care for Patients
with Schizophrenia
Linda Ganzini and Anne F.Gross
INTRODUCTION
Patients with chronic psychotic disorders such as schizophrenia
suffer disparities in healthcare throughout life and have special
care needs and vulnerabilities at the end of life. Despite having
cared for individuals with schizophrenia for many years, mental
healthcare professionals may be uncertain of their role in pro-
moting wellness behaviors in their patients or working collab-
oratively with other clinicians when their patients develop cancer.
Oncologists and palliative care clinicians may lack comfort in
communicating with mentally ill patients, negotiating a maze of
mental health services, and prescribing for people already taking
psychotropic medications. We will discuss cancer risk, outcomes,
prevention and symptom management, prescribing antipsychotic
medications, advance care planning, and end-of-life care for
patients with schizophrenia. Because there are many gaps in our
empirical understanding of the challenges that face patients with
both schizophrenia and cancer, we will draw on our clinical expe-
rience in caring for these patients.
Case:Mr. A
Mr. Awas a 68-year-old man with a history of chronic paranoid
schizophrenia, requiring psychiatric hospitalization multiple
times before the age of 60years. More recently, however, he had
been stabilized with clozapine, guardianship, and foster care. He
had both obstructive and central sleep apnea for which he was on
two liters of oxygen. His Folstein Mini-Mental State Examination
score was 10/30 and he was dependent in all instrumental activi-
ties of daily living. Without an identifiable stressor, he became
more agitated and his psychiatrist increased his clozapine. Mr.
Athen had two grand mal seizures, one of which occurred after
his clozapine was decreased. Clozapine was discontinued and
quetiapine was prescribed. Mr. Aexhibited worsening paranoia,
resistance to care, hyperglycemia, and new urinary incontinence,
so he was switched to ziprasidone 40 mg orally twice daily. His
foster care provider reported hematuria, but he exhibited severe
agitation during a diagnostic radiological exam during which he
struck the technician. His guardian and caregiver delayed fur-
ther evaluation for his hematuria until he was psychiatrically
more stable. He then developed guarding of his back with spasm
and agitation. He yelled when his back was touched, though he
consistently denied pain. His creatinine increased to 2.4 mg/dl.
His primary care provider was concerned about beginning opi-
ates because of uncertainty regarding his pain levels, diagnosis,
and his apnea. In addition, both his psychiatrist and primary
care provider were uncertain whether he was exhibiting worsen-
ing psychosis or delirium, which might be worsened with opiates.
His guardian and care provider agreed to a computerized tomo-
graphic examination of the abdomen and attended the test with
him. Multiple lesions thought to be renal cell carcinoma were
found. His guardian, foster care provider, and physician were
now comfortable with opiate treatment. Mr. Aremained in foster
care, but was enrolled in hospice, and he died comfortably three
weeks later.
CLINICAL PRESENTATION OF
SCHIZOPHRENIA AND BARRIERS
TOMEDICAL CARE
People with severe mental illness (SMI) are defined by the National
Institute of Mental Health (NIMH) as individuals who meet three
criteria:having a diagnosis of a non-organic psychosis or person-
ality disorder; having had prolonged illness and treatment (i.e.,
at least two years duration); and having suffered from significant
disability.1,2 More recently, SMI has been defined as individuals
with schizophrenia (and other similar psychotic disorders, such as
schizoaffective disorder, during which a patient suffers prominent
mood symptoms during psychosis), as well as bipolar disorder, and
may also include other comorbid mental disorders. According to
the NIMH, approximately 1% of people within the United States
have schizophrenia, affecting men and women at approximately
equal rates but often presenting earlier in men than in women.2
There is great heterogeneity in the manifestations and functional
impairment associated with schizophrenia. Some patients with
decades of severe disease have spent many years in institutional
care and have never lived independently. Others, especially those
whose symptoms first started in middle age, maintain normal
affect, have preserved communication skills and cognitive abil-
ity, and display only mild residual symptoms between psychotic
346 Section VII psychiatric disorders
episodes.3 Positive symptoms of schizophrenia include delusions,
hallucinations, and paranoia; the negative symptoms include
social withdrawal, poor eye contact, apathy, odd behaviors, and
peculiar or impoverished speech. Patients with schizophrenia
frequently demonstrate cognitive impairments, particularly in
the attentional and executive systems, which hinder new learn-
ing, abstraction, and mental flexibility. Unfortunately, these
cognitive abnormalities often do not respond to antipsychotic
treatment.4 Comorbidities with other mental illnesses, including
anxiety, depression, and substance abuse, are very common in
patients with schizophrenia and often lead to destabilizing psy-
chotic symptoms, worsening prognosis, and increasing disabili-
ties, including increased risk of violence, suicide, legal problems,
and medical illness.5 For instance, the Epidemiologic Catchment
Study found that 47% of patients with schizophrenia had sub-
stance abuse disorders.6
The symptoms of schizophrenia influence health and health-
care practices at many levels. Patients with disorganized speech
may report physical symptoms in an idiosyncratic or muddled
manner. Providers may be confounded by bizarre somatic delu-
sions.7 Individuals with schizophrenia often admit to a sense of
emptiness and may respond to distress in a manner that can be
difficult to gauge. Even a keenly empathic clinician may struggle
to develop rapport and judge her patients emotional response to
psychological stressors, such as knowledge of terminal illness, or
to physical symptoms, such as pain.8
Despite these challenges, many mentally ill patients wish to
be involved in and informed about their medical illnesses, and
involved in making decisions, even though they perceive that
their participation is limited.9 Their satisfaction with the amount
of information they receive is low,10 and they report discrimina-
tion within the healthcare system.1113 In one study, patients with
psychotic disorders were about half as likely to identify a primary
care physician, five times more likely to indicate they needed
medical care but were unable to obtain it, and seven times more
likely to indicate that they needed a prescription but were unable
to secure one.14
Physicians may, at times, encounter maladaptive denial of dis-
ease, which may ultimately lead to refusal of care. For example,
approximately one-third of patients with schizophrenia do not
believe that they have a psychiatric illness,15 and some patients
with schizophrenia continue to deny their cancer diagnosis, even
in the presence of obvious physical signs.7,1618 Overall, faulty
problem-solving abilities on the part of the patient may lead to an
unsophisticated use of the healthcare system.19
When a patient with schizophrenia refuses cancer treatments or
is psychologically unable to tolerate it, the clinician may question
the patients decision-making capacity. Grisso and Appelbaum
identify four legal standards relevant to decision-making capac-
ity, including the abilities to:(1)express a choice; (2)understand
information relevant to treatment, including risks, benefits, and
alternatives; (3)appreciate this information by applying it to ones
own personal situation; and (4)use rational thinking processes,
grounded in personal values and interests.20 For example, patients
with schizophrenia may have such disorganized speech or severe
ambivalence that they are unable to communicate a stable choice.
Cognitive impairments may undermine patients who are unable
to weigh risks and benefits. Patients who deny that they have
cancer are unable to apply information about options for cancer
care to themselves. Psychotic symptoms may render a patient
non-decisional if, for example, voices instruct the patient, severe
paranoia impairs the patients ability to work with care provid-
ers, or delusions develop around treatment needs. Studies indi-
cate that approximately half of patients with schizophrenia, if
applying one or more of these standards, have some difficulties
with decision-making abilities. Only a small fraction, however,
will have been adjudicated incompetent by a court of law.21 These
decision-making abilities may fluctuate with exacerbation and
remission of psychiatric symptoms. Although actual legal stan-
dards vary by jurisdiction, clinicians caring for the patient have
the de facto and often de jure authority to determine a patients
decision-making abilities without judicial intervention.22
Patients face decisions of varying levels of complexity, ranging
from identifying a surrogate decision-maker or determining over-
all goals of care to deciding among specific treatments such as che-
motherapy, surgery, or radiation therapy. Patients with cognitive
impairment may be especially taxed by decisions that are complex
in their trade-offs between the goals of comfort and quality of
life and the prolongation of life. Assessment of decision-making
capacity should only occur after there have been attempts to
educate the patient about the nature of the malignancy and the
course of care recommended. Studies of research consent capac-
ity in individuals with schizophrenia have shown that enhanced
consent procedures that include several reviews of the treatment
options and tailored educational interventions can transform the
level of understanding in non-decisional patients into that of peo-
ple without mental illness.23 Even patients with severe denial of
cancer may gradually accept their diagnosis and may be able to
collaborate with the healthcare team. Educational efforts should
continue as long as they do not result in worsening psychosis or
agitation.
Unfortunately, stigma toward people with schizophrenia may
further exacerbate healthcare inequalities. 24 Stigmatized beliefs
about schizophrenia by healthcare providers may lead them to
overestimate the risk of violence and agitation, mistakenly assume
that the individual with schizophrenia is unable to adhere or
tolerate treatment, or discount reports of physical symptoms as
psychiatric in nature. Additional obstacles within the healthcare
system include insurance barriers and a fragmented system with
lack of integration of mental and physical care.
MORBIDITY AND MORTALITY
INSCHIZOPHRENIA
Schizophrenia reduces life expectancy by between 10 and
15years, even when death by suicide or violence is excluded.25,26
Substantially shortened life expectancy is found even in countries
with universal access to healthcare. Of great concern, the mortal-
ity gapthe gap between the age of death for people in the com-
munity without mental illness and those with schizophreniahas
increased over recent decades.19 Cancer is one of the most com-
mon causes of death in patients with schizophrenia, ranging from
9% to 37%.24,2732 Premature medical morbidity in patients with
schizophrenia may be promoted by unhealthy lifestyles, including
tobacco, drug, and alcohol abuse; sedentary activity and obesity;
and poor uptake of chronic disease regimens.26,33 For example,
over one-third and in some studies as many as 92% of patients
with schizophrenia use tobacco. Furthermore, quit rates are

substantially lower than non-mentally ill comparison groups.34
Patients with schizophrenia are at higher risk of developing dia-
betes mellitus and infectious, cardiovascular, and respiratory dis-
eases when compared to age- and sex- matched controls.35 Among
patients with both cancer and schizophrenia, these comorbidities
may worsen overall outcomes. Hospitalized patients with schizo-
phrenia are at higher risk for deep venous thrombosis, pulmonary
embolism, decubitus ulcers, infection from medical care, postop-
erative respiratory failure, and sepsis, 36 all of which may impact
treatment of cancer.
SCHIZOPHRENIA:CANCER RISK
ANDCANCER MORTALITY
Despite the aforementioned lifestyle factors that may predispose
patients with schizophrenia to cancer, high-quality epidemiologi-
cal studies support the intriguing hypothesis that the overall risk
of development of cancer in patients with schizophrenia is not
increased and, in fact, may be decreased.37 Some researchers have
posited that schizophrenia may confer a genetic protective effect
toward cancer. For example, three research groups have reported
that family members of people with schizophrenia are at reduced
risk of developing cancer,3840 though this was not confirmed in a
third study.41 The exceptions are that both men and women with
schizophrenia have increased risk of lung cancer,4244 and women
with schizophrenia are consistently shown to have increased risk
of breast cancer.45 Factors that promote breast cancer in this pop-
ulation may include obesity, nulliparity, and hyperprolactinemia.
Three recent studies underscore that although persons with
schizophrenia may have lower incidence of cancer, their all-cause
and cancer-specific mortality is significantly higher than those
without mental illness, despite many contacts with the healthcare
system. These studies are of high quality in that they are large,
prospective, and have more complete ascertainment of diagnoses
compared to earlier studies, thus minimizing bias. Capitalizing
on data that include medical information on 96% of the popu-
lation of Taiwan, Chou and investigators compared over 59,000
persons with schizophrenia and three times as many controls
over nine years. The overall odds of developing cancer were sig-
nificantly lower in persons with schizophrenia (odds ratio:0.64;
95% CI:0.660.76).46 The incidences of seven types of cancer were
significantly lower in persons with schizophrenia, and only two
cancers, breast and uterine/cervical, were similar in incidence.
However, mortality was higher (adjusted hazard ratio:1.36; 95%
CI:1.241.5) and earlier after cancer diagnosis. Similarly, Crump
and co-authors reported on over 8000 persons with schizophrenia
in Sweden followed for seven years.25 Compared to non-mentally
ill, men with schizophrenia had significantly lower incidence of
cancer, while women had no difference in incidence. However, the
hazard ratio for death among those with schizophrenia was 1.71
(95% CI:1.382.1) in women and 1.44 in men (95% CI:1.151.8), and cancer is, in part, because of under-detection and lack of
even after adjusting for age, sociodemographic factors, and sub-
stance abuse diagnoses. Kisely et al. examined all new cases of
cancer in Western Australia from 1988 to 2007, of whom 4.8% had
a mental health diagnosis.47 The incidence of cancer was lower
in men with schizophrenia (OR:0.79, 95% CI:0.611.02), but not ANDMANAGEMENT
different in women. The mortality among patients with schizo-
phrenia and cancer was, however, twice that of non-mentally ill
persons with cancer.47
Chapter44 patients with schizophrenia 347
The specific reasons for these poor outcomes are uncertain.
Some patients with schizophrenia who develop cancer are diag-
nosed later in the course of disease and have fewer curative treat-
ments available. Kisely and co-authors reported that patients in
Western Australia with mental illness were more likely to present
with metastases, and not receive cancer surgery or chemotherapy,
but specific information on schizophrenia was not presented.47
Farasatpour and colleagues found that women with schizophrenia
often present with high-stage disease, frequently delaying or refus-
ing treatment, which often prevented breast-conserving treatment
as a therapeutic option.48 Iezzoni etal. reported that breast can-
cer patients with mental disability, as determined by social secu-
rity status, were less likely to undergo surgery and radiotherapy
compared to non-disabled people.49 For these patients, all-cause
mortality was elevated. Crump and co-authors reported that anti-
psychotic therapy was associated with a significantly lower risk of
cancer specific mortality.25
PREVENTIVE CARE
Patients with schizophrenia are less likely to undergo routine
screening for cancer than people without mental illness. Multiple
studies have demonstrated that women with schizophrenia are less
likely to undergo routine mammography;50,51 one study found that
women with psychotic disorders were half as likely to complete a
mammography.52 The absence of continuity of care is the strongest
variable accounting for the difference compared to women without
schizophrenia,51 and the difference is not accounted for by lack of
insurance. Lindamer and colleagues interviewed middle-aged and
elderly women with schizophrenia.53 Only 41% had a mammo-
gram in the previous year, though 89% had insurance and 91% had
a primary care provider. In comparing patients with and without
mammograms, there was no difference in knowledge about breast
cancer or the benefits of a mammogram. Those without a mammo-
gram, however, perceived more barriers to obtaining one, and had
more negative attitudes about mammography, particularly if their
doctor had performed a breast examination or expressed doubt
about the need for a mammogram.53 Women with schizophre-
nia are also less likely to undergo cervical cancer screening;5456
Martens determined that additional risk factors include age over
50 and being located in a low-income area.57 In addition, screen-
ing for colorectal cancer is particularly low among this population,
ranging from 4% to 12%.58,59 Notably, however, not all studies have
found differences in screening rates for breast and cervical cancer
in women with mental illness.56,60,61
Risk factors and reasons for not receiving preventive care are
similar among the mentally ill. Arecent Cochrane collaborative
review found no studies that test interventions to increase can-
cer screening in persons with SMI.62 In summary, these data sup-
port that the higher mortality among patients with schizophrenia
screening.
SYMPTOM ASSESSMENT
The most distressing symptoms of cancer-related disease bur-
den and/or treatment include fatigue, nausea, constipation,
delirium, and pain. There are many case reports of unusual pain
348 Section VII psychiatric disorders
insensitivity among patients with schizophrenia when severely
injured, for example, by fractures, perforated bowel, or burns.
This pain insensitivity may lead to delayed or missed diagno-
ses.63,64 Sciolla, however, used the SF-36 to compare older patients
with schizophrenia with normal controls and found that the level
of bodily pain was not different between the two groups, even
though ratings of overall physical health by patients with schizo-
phrenia were worse.65 Schizophrenia patients may be addition-
ally at risk for under-treatment of pain if clinicians are concerned
about prescribing medications, particularly opiates, to a group
of patients already taking psychoactive medications. Though
patients with schizophrenia have high rates of drug abuse, opiate
abuse is relatively rare.66,67 The physician must be careful to not
misattribute the patients report of distressing somatic symptoms
as merely symptoms of psychosis without an appropriate medi-
cal evaluation. In addition, the physician may have to spend extra
time with a patient who is disorganized and/or distrustful in order
to establish rapport and collect an accurate and thorough medical
review of symptoms.
Many chemotherapeutic agents and medications that are used
to treat cancer have neuropsychiatric side effects. In patients
with schizophrenia, the clinician might be especially concerned
about the medications that can cause and/or exacerbate psycho-
sis. Corticosteroids have dose-dependent neuropsychiatric side
effects that include psychosis. Other agents that can cause psycho-
sis include interferon-alpha and bortezomib (Velcade).68
Fatigue is a common symptom in patients with cancer and
often impairs quality of life and limits functional abilities.
Psychostimulants are often used to treat cancer-related fatigue,
and may also improve patients depression and stimulate appe-
tite.68 The use of psychostimulants in patients with schizophrenia
has been shown to improve negative symptoms of schizophrenia
without exacerbating positive symptoms in stabilized patients on
antipsychotic treatment.69 The use of psychostimulants to treat
cancer-related fatigue in patients with schizophrenia should be
closely monitored for worsening of positive psychotic symptoms
and agitation.
When a patient with schizophrenia and cancer develops wors-
ening behavior, such as hallucinations or delusions, many cli-
nicians may incorrectly assume that this represents a relapse
of schizophrenia. In fact, delirium is the most common mental
manifestation of serious illness including advanced cancer,70 yet it
is regularly mistaken for another mental disorderpatients with
hypoactive delirium are often perceived as depressed, and patients
with hyperactive delirium are often mistakenly diagnosed as psy-
chotic or manic.71 Schizophrenia, associated with neurodevel-
opmental abnormalities and polypharmacy, likely increases the
risk of delirium at the end of life.72 Alternatively, delirium may
unmask pre-existing psychosis in paranoid patients who can no
longer maintain their guard.
Several aspects of the mental status examination may help the
clinician distinguish between worsening psychosis of schizophre-
nia and delirium superimposed on schizophrenia. Attention and
concentration are impaired in patients with delirium, but are usu-
ally normal in patients with schizophrenia. The non-delirious
patient with schizophrenia should be able to complete simple
measures of attention without error, such as saying the days of the
week backward, repeating at least five random numbers, and per-
forming simple serial subtractions, such as counting backward by
3 from 20. Adecline of two or more points on the 30-item Folstein
Mini-Mental State Examination was found to discriminate deliri-
ous from cognitively intact elderly patients.73
Hallucinations in schizophrenia are primarily auditory. In con-
trast, hallucinations in delirium are more frequently visual and
tactile. Patients with schizophrenia who are picking at things in
the air or complaining of visions should be evaluated for delirium.
Delirious patients may have altered awareness and psychomotor
abnormalities. For example, the hypomotoric apathy of delirium
can be difficult to distinguish from drug-induced parkinsonism
or emotional withdrawal. Typically, true sleepiness and difficulty
with arousal are not symptoms of schizophrenia. Additionally,
delirium severity fluctuates throughout the day, often worsen-
ing through the evening, whereas diurnal variations are seldom
encountered in patients with schizophrenia. Overall, sleep dis-
turbances with frequent nocturnal awakenings and worsening
behavior at night are common in delirium, but rare in schizophre-
nia. Agitation and physical aggression may be manifestations of
either disorder.
The evaluation of delirium is no different in the patient with
schizophrenia than the non-mentally ill patient. There is no rea-
son to think that the likely causes of delirium are any different in
terminally ill patients with schizophrenia than in other patients;
infections, metabolic abnormalities, drugs, and dehydration are
most commonly implicated, with more than one of these factors
usually present.74 Clinician aggressiveness in pursuing a cause
for delirium will depend more on the goals of care, the patients
setting (e.g., hospice vs. the acute care hospital), and estimated
survival. For example, among patients with schizophrenia who
are actively receiving chemotherapy, the clinician might fully
evaluate the causes of a new delirium, whereas a patient in hos-
pice with new hypoactive delirium might receive only limited and
non-invasive evaluation.
Antipsychotics are the preferred medication for treating behav-
ioral problems in patients with delirium.74 In a paranoid, agitated,
or aggressive patient with schizophrenia and delirium, the clini-
cian has the option of increasing the patients usual antipsychotic
or temporarily adding a second agent. Although use of more than
one type of antipsychotic is inadvisable long term, for ill and hos-
pitalized patients, or for patients in hospice, temporary addition
of low doses of haloperidol to another a long-acting antipsychotic
is acceptable provided the patient does not have substantial prob-
lems with drug-induced parkinsonism or akathisia. Haloperidol
can be given by a variety of routes in patients with advanced
disease who are unable to swallow, or in home hospice patients
who do not have intravenous access. Haloperidol has a wide mar-
gin of safety, lacking both anticholinergic properties that may
worsen confusion and anti-adrenergic properties that may cause
orthostatic hypotension in patients who are ambulatory. Finally,
oncologists, palliative care physicians, and other care providers
are likely comfortable and familiar with prescribing haloperidol,
as it is used in many settings.
USE OF ANTIPSYCHOTICS
IN3ADVANCEDCANCER
The last decade has been marked by an increased use of atypical or
second-generation antipsychotic medications for the treatment of
schizophrenia. Agreat deal of research has focused on the potential
 Chapter44 patients with schizophrenia 349

for improved efficacy of treatment and diminished adverse effects
with these medications. The first atypical antipsychotic was clo-
zapine, with convincing evidence for effectiveness of both positive
and negative symptoms in treatment-resistant schizophrenia (see
below for more on the use of clozapine in terminally ill patients).
Subsequent Food and Drug Administration (FDA) approvals were
received for risperidone, olanzapine, quetiapine, ziprasidone, and
aripiperazole. These medications are consistently associated with
decreased rates of tardive dyskinesia (TD) and other extrapyra-
midal symptoms, compared to first-generation antipsychotics.75
More recently, two large government-funded studies did not show
clear differences in effectiveness or quality-of-life ratings of the
second-generation drugs compared to first-generation drugs, and
highlighted substantial intolerance of second-generation drugs
resulting from hyperglycemia.76,77 More recently released anti-
psychotics, for which there are fewer comparative studies, include
lurasidone, asenapine, iloperidone, and paliperidone.
Table 44.1 outlines some of the currently available antipsychot-
ics and their available formulations.48,7881 With the exception of
clozapine, for which there are benefits among a subpopulation of

Table44.1 Some of the Currently Available Antipsychotics and Their Available Formulations

Adverse Effects Associated Signs and
Symptoms
Autonomic Orthostatic
hypotension:syncope,
falls with possible injury
and functional decline
Tachycardia
Anticholinergic Dry mouth, constipation,
urinary retention, blurry
vision, delirium
Metabolic Increased risk of
syndrome hyperglycemia,
hyperlipidemia, diabetes
mellitus, weight gain
Cardiac Increased risk of torsades
QTc prolongation de pointe (TdP), a
ventricular arrhythmia
General Management Strategies Management in Patients with Advanced Cancer/
Enrolled in Hospice Care
Hypotension associated with clozapine, quetiapine, Orthostatic hypotension is of less concern among
iloperidone, risperidone, and paliperidone. Can patients who are no longer ambulatory.
consider changing to ziprasidone, lurasidone,
aripiprazole, or haloperidol
Patients should be educated to get up slowly when
laying down.
Tachycardia associated with clozapine, quetiapine,
risperidone
Effects are additive across medications that have
anticholinergic effects. Avoid thorazine, olanzapine.
Consider aripiprazole or risperidone, or haloperidol.
Associated with second-generation antipsychotics; These effects are of less concern in patients with
highest risk includes clozapine and olanzapine and advanced disease. Hyperglycemia, however, may be
lowest risk includes aripiprazole and ziprasidone. symptomatic, causing, for example, urinary frequency
Monitoring guidelines are available; they include and incontinence.
monitoring body mass index, waist circumference,
blood pressure, fasting glucose, and fasting lipid
profile.
Can consider changing to first-generation
agent, ziprasidone, aripiprazole, or pursue
weight-reduction program.
Risk factors include:long QT syndrome, female, The benefits of antipsychotics likely outweigh the risks
advanced age, hypokalemia, hypomagnesemia, for patients with schizophrenia and advanced cancer
hypocalcemia, bradycardia, left ventricular even if Qtc prolonged; obtaining electrocardiograms
dysfunction, heart failure. may not be necessary for patients with advanced
Effect additive with other medications that prolong cancer/in hospice in whom the focus of care is
QTc. comfort and decreased burden, not life prolongation.
All antipsychotics increase the risk of QTc
prolongation but most are small.
Lower risk with second-generation antipsychotics,
including olanzapine and aripiprazole.
Haloperidol, a high potency first-generation
antipsychotic commonly used in the medically
ill, does have mild QTc prolonging effects in oral/
intramuscular formulation; intravenous (IV)
formulation may carry higher risk.
While using IV haloperidol, obtaining baseline
QTc is recommended with QTc monitoring
subsequently.
(continued)
350 Section VII psychiatric disorders

Table44.1(Continued)

Adverse Effects Associated Signs and General Management Strategies Management in Patients with Advanced Cancer/
Symptoms Enrolled in Hospice Care
Keep K+ > 4 and Mg++ > 2
If QTc > 500 ms, risk versus benefit assessment
must be donereview other meds, check
electrolytes consider decreasing antipsychotic dose,
or changing to a different antipsychotic.
Hematologic Agranulocytosis, aplastic Clozapine has highest risk of agranulocytosis Some patients may need to be transitioned from
anemia, neutropenia, particularly in first six months of treatment. clozapine to another antipsychotic if blood draws are
eosinophilia, If white blood count < 2000 or absolute neutrophil no longer possible or neutropenia develops from any
thrombocytopenia count < 1000, stop clozapine and do not restart. other reason, such as chemotherapy.
Not dose dependent.

Rare reports of agranulocytosis with

Extrapyramidal
Acute dystonia Muscle spasms, pain,
decreased range of
motion, difficulty
swallowing, rarely airway
compromise
some first-generation phenothiazines (e.g.
chlorpromazine)
Effects additive with phenothiazine anti-emetics
More common with high-potency medications
such as haloperidol.
Risk factors include younger age, male sex
Treatment promptly with anticholinergics such
asIM/IV benztropine 2 mg or diphenhydramine
50mg.
Oral anticholinergics unlikely to be rapidly effective.

Akathisia Motor restlessness, First line:treat with propranolol 1030 mg TID; Can be difficult to distinguish from agitated delirium
anxiety, pacing, agitation Olanzapine may have less liability for akathisia. in ill patients.

Drug-induced Tremor, bradykinesia, Decrease dose of medication. Continue to monitor in advanced disease, as may
Parkinsonism rigidity, falls, decreased Consider changing to quetiapine. decrease bed mobility, impact activities of daily living,
mobility Add low-dose anticholinergic such as benztropine
and cause discomfort.
1mg twice daily.
Tardive Irreversible, involuntary First signs occur after several months of treatment. Monitoring in patients with advanced/terminal disease
dyskinesia (TD) choreoathetoid Consider changing to second-generation not required, as TD rarely causes discomfort and often
movements often in face, antipsychotics. patient is unaware of movement. Educate patient and
trunk, limbs, Monitor for dental, gait, and speech problems.
family on cause of movements and that they are not
volitional.

treatment-resistant patients (patients who fail to respond ade-
quately to other antipsychotics), there are marginal differences in
effectiveness among antipsychotics, but more prominent differ-
ence in adverse effects. In addition, they vary in route of admin-
istration, including oral dissolving formulas that are difficult to
spit out, oral solutions, and intramuscular formulations for rapid
administration. In addition, there are six long-acting injectable
(LAI) formulations in the United States, which are indicated for
patients with problems with non-adherence (Table 44.2).48 For
schizophrenia patients with behavioral problems related to super-
imposed delirium, the clinician may add any oral formulation to
the long-acting injectable formulations.
The vigilance for adverse effects to antipsychotics may dif-
fer between patients with disease for which they are undergoing
active treatment versus patients with advanced cancer, in whom
the goals of care are mostly comfort. The most important potential
adverse effects of antipsychotics for schizophrenia patients whose
cancer is advanced, but who remain ambulatory, are anticholiner-
gic adverse effects, drug-induced parkinsonism, and orthostatic
hypotension (Table 44.1). Orthostatic hypotension is prominent
with any drug with adrenergic receptor blockade.81 Among
patients who already may be somewhat dehydrated, orthostasis
increases the risk of falls with injury and may facilitate confine-
ment to bed, thus worsening patients overall functional status.
Anticholinergic effects can be beneficial in terminal care, and
clinicians sometimes prescribe strong anticholinergics, such as
scopolamine, to dry secretions. These medications, however, can
promote delirium, dry mouth, constipation, blurry vision, and
urinary retention.
Extrapyramidal Adverse Effects of Antipsychotics
Antipsychotics are effective for the treatment of psychosis through
their dopaminergic neuronal blocking effects. Dopaminergic
blockade can also produce acute dystonia (which is rare in
 Chapter44 patients with schizophrenia 351

Table44.2 Routes of Administration for Common Antipsychotics Drug-induced parkinsonism is common, age-related and
potentially reversible. Among ambulatory patients, drug-induced
Antipsychotic Medication Types of Formulations parkinsonism increases the risk of falls with injury and functional
decline. Among bed-bound patients, it will lead to poor bed mobil-
haloperidol Tablets
ity (and caregiver risk of injury) and increased patient discomfort.
Oral concentrate
Compared to other second-generation antipsychotics, quetiapine
Injectable (IJ) is the least likely to cause drug-induced parkinsonism.81
Long-acting injectable (LAI)

chlorpromazine Tablets Metabolic Syndrome

Extended release capsule, IJ Antipsychotics, particularly second-generation ones, are asso-
ciated with increased risk of hyperglycemia, diabetes mellitus,
olanzapine Tablets
and hyperlipidemia. These are rarely important in patients with
Oral dissolving
advanced cancer, though, at times, worsening hyperglycemia can
IJ
cause symptoms that degrade quality of life.
LAI

aripiprazole Tablets Cardiac Effects

Oral solution Many physicians are concerned about the risk of QTc prolonga-
Oral dissolving tion with the use of psychotropic medications including antipsy-
IJ
chotics. An unusual cardiac rhythm, torsades de points, results in
LAI
persons with prolonged QTc, which may progress to a fatal ven-
tricular arrhythmia. Persons with a QTc of greater than 550 ms
quetiapine Intermediate release tablets have a 2.14-fold greater risk of sudden death compared to a QTc
Extended release tablets of 400 ms and clinicians are advised to consider interventions
risperidone Tablets when the QTc is greater than 500 ms.86 Thioridazine, intravenous
Oral dissolving haloperidol, and ziprasidone carry the highest risks.86 For patients
Oral solution
who are administered most other antipsychotics, routine moni-
toring of QTc is not necessary unless there are other risk factors
LAI
for prolonged QTc (Table 44.1). Even then, the benefits of antipsy-
ziprasidone Capsules chotics generally outweigh the risks for patients with schizophre-
IJ nia and cancer, and it would be unusual to completely discontinue
antipsychotics for this reason in a patient with schizophrenia.

medically ill and older people), drug-induced parkinsonism, Clozapine

akathisia, and tardive dyskinesia (TD).
Tardive dyskinesia is a syndrome of irreversible, involuntary,
choreoathetoid movements in the face, trunk, or limbs that devel-
ops after three to six months of antipsychotic treatment. TD is
stigmatizing; it can annoy caregivers who may not understand its
involuntary nature. In most cases, however, TD causes neither dis-
comfort nor substantial functional impairment.82,83 In fact, many
patients with TD are unaware of their movements.84 Although TD
is a major concern in the treatment of schizophrenia, it is rarely
relevant in decision-making in persons with advanced cancer; the
risk for TD need not be considered in choosing an antipsychotic,
and surveillance for TD is not necessary among patients with a
limited life expectancy.
Akathisia is a syndrome of motor restlessness in which patients
complain of a very unpleasant need to move. Akathisia can be
experienced as anxiety and dysphoria, and patients can appear
restless, agitated, and irritable. Akathisia will worsen the agitation
associated with hyperactive delirium or psychosis, and can result
in physical aggression.81 The incidence of akathisia is between
20% and 30%.85 Lipophilic beta blockers, such as propranolol, are
generally an effective and well-tolerated treatment at relatively low
doses. Benzodiazepines are also modestly helpful in diminishing
the subjective perception of akathisia. 81 Awareness and clini-
cal suspicion for akathisia can result in improved quality of life
and therefore should be systematically reviewed during treatment
with antipsychotics, even among patients with advanced cancer.
The adverse effects of clozapine, one of the earliest second-generation
antipsychotics, represent an unusual treatment conundrum.
Clozapine is primarily prescribed for patients whose psychosis has
not responded to other antipsychotics; approximately one-third of
these treatment-resistant patients will have substantial improve-
ment in both positive and negative symptoms of schizophrenia.87
The life-threatening risk of neutropenia mandates hematological
analysis at a minimum of monthly, sometimes more often
clozapines licensing company will not allow refills of the medi-
cation before a normal white blood cell count is demonstrated.
Because of the risk of neutropenia, clozapine-treated patients with
cancer may need to make decisions regarding cancer chemotherapy
that could result in the need for either clozapine or cancer treat-
ment discontinuation.88,89 These decisions will require active con-
sultation from the patients psychiatrist. Clozapine-treated hospice
patients who are not receiving any other life-sustaining treatments
are still required to undergo periodic complete blood counts.
INTERVENTIONS TO IMPROVE
CANCER CARE FOR PATIENTS
WITHSCHIZOPHREHIA
Despite the challenges associated with caring for patients with
schizophrenia and cancer, several studies have identified ways
to improve cancer screening, medical care, and outcomes.
352 Section VII psychiatric disorders
Collaboration between a primary care physician and a mental
health provider has been found to increase rates of breast and cer-
vical cancer screening. 56,9092 In addition, Long and co-authors
identified other positive predictors for obtaining screening,
which include continuity of care, provider recommending screen-
ing, recent frequent medical visits, insurance, being African
American, higher level of education, and no prior psychiatric
hospitalizations.56,93 Martens et al. also reported that continu-
ity of medical care was associated with improved cervical cancer
screening rates.57
Interventions to improve general medical outcomes in indi-
viduals with SMI were reviewed by Bradford and co-authors, who
synthesized evidence on four randomized trials and reported that
integrated care interventions were associated with increased rates
of screening. Atrial that included skills training and nurse preven-
tive healthcare visits in elderly adults with SMI was associated with
increased preventive healthcare, including mammograms and pap
smears, and nearly twice the rate of completed advance directives.94
Decreased mortality and fewer cancer deaths in patients with
SMI have been associated with maintaining medical contact and
continuity of care. The Department of Veterans Affairs completed
an outreach to 3300 veterans with serious mental illness who had
been lost to contact. Lack of re-engagement was associated with
increased odds (OR:4.76) of dying of cancer.95 Kisely examined
the effectiveness of community treatment orders (mandatory
outpatient treatment) among 2958 patients with serious mental
illness in Australia, and found lower rates of death compared
to demographically matched controls at two-year follow-up; the
strongest effects included decrease risk of cancer death.47
ADVANCE CARE PLANNING AND
END-OF-LIFE CARE IN PATIENTS WITH
SCHIZOPHRENIA AND CANCER
Some concern has been expressed regarding the ability of patients
with SMI to participate in advance care planning, including pro-
viding written advance directives and designating a healthcare
proxy before decision-making capacity is completely lost. Foti
etal. interviewed 150 middle-aged patients with serious mental
illness, two-thirds of whom had schizophrenic-spectrum disor-
ders.96 Although study participants had worse physical health
than the general population, they reported little experience with
advance care planningonly 5% had talked to their doctor about
their care preferences for serious medical illness, and only 2% had
documented healthcare preferences. Over two-thirds expressed
an interest in obtaining more information on how to formally
designate a healthcare surrogate, and most were able to specify
at least one person who could act as a healthcare proxy. Only 4%
of the study participants found completing information about
advance care preferences very stressful, though the interviewer
rated 70% of participants as uncomfortable with the conversation,
suggesting that clinicians may overestimate the psychological
difficulties and distress of patients making these decisions. Foti
and co-authors suggest that mental health practitioners are one
of the logical community resources for conducting advance care
planning with patients with serious mental illness.96 In a multisite
study of veterans who died, patients with mental disorders did not
differ in advance directive completion rate from veterans without
mental diagnoses.97
Little is known about access and barriers to quality end-of-life
care for individuals with schizophrenia. Potential barriers are
lack of advance care planning, fewer family members involved in
care, difficulties in symptom assessment, and concerns regard-
ing adding potentially psychoactive medications. Ganzini and
co-authors compared measures of quality end-of-life care among
veterans with and without schizophrenia who died of cancer in
the Northwest United States. Patients with schizophrenia had
longer hospice stays but had no differences in advance directive
completion, hospice enrollment,98 do not resuscitate orders, hos-
pital death, or prescription of opiates before hospice enrollment.
In contrast, in a series of studies based on a unique data repository
in Manitoba, Canada, patients with schizophrenia who died were
more likely to be in nursing home care, have fewer specialist visits,
less opiate analgesia, and less specialist palliative care.99
For a patient who is non-decisional, the clinician will need to
locate a surrogate. The clinician should first turn to the person
named in an advance directive, followed by a guardian, if one is
available. In the absence of an advance directive, many jurisdic-
tions allow family, or even friends, to make decisions regarding
care; other jurisdictions will not allow any decision that withholds
life-sustaining treatment for the patient without a legal process.100
At times, the family may request that the clinician apply a thera-
peutic exception, whereby the physician declines to inform the
patient of the cancer diagnosis for fear of a catastrophic psycholog-
ical reaction. This is both ethically suspect and rarely warranted.
The presence of a mental disorder should not result in manda-
tory application of life-sustaining treatment, which may be at odds
with comfort and palliation. Foti and colleagues reported that
59% of mentally ill individuals, when presented with the scenario
of pain medication in the case of incurable cancer, indicated that
they would want increased dosage even if confusion or inability
to communicate resulted.96 Coercive treatments should be con-
sidered only in cases where there is high likelihood of improved
survival or quality of life (or both).101 Even then, treatments may
be difficult to apply. Refusals by a non-decisional but continually
resistive patient may be respected if the patient will never be able
to appreciate the benefits of treatment, and the force required to
treat the patient seems egregious.7
CARING FOR HOMELESS PATIENTS WITH
BOTH CANCER AND MENTAL ILLNESS
An estimated 2.33.5 million individuals in the United States
are homeless; between one-fourth and one-third have a seri-
ous mental illness such as schizophrenia. Among people with a
psychotic disorder, 8%18% will have an episode of homeless-
ness.102,103 At the time of cancer diagnosis, homeless individuals
are already struggling to secure food, housing, transportation,
and basic medical care; half have no health insurance. Homeless
patients with mental illness are more likely to lack friends or fam-
ily members to serve as surrogates. Short of legal guardianship,
most states do not have legal processes for making decisions for
such patients, though a few states allow the attending physician
to make healthcare decisions in the absence of decisional capacity
or surrogates.103
Homelessness compounds the difficulty of adhering to medica-
tion schedules. Such patients do best with once per day medica-
tion regimens. Clinicians may need to avoid prescribing unstable

compounds requiring refrigeration. Prescribing small amounts of
medications with abuse potential will reduce the risk that medica-
tions will be sold, or that the client might be robbed. Clinicians
should attempt to work with patients to reduce substance abuse,
but should anticipate harm reduction associated with relapses,
rather than complete remission.103
Many homeless individuals will either die in shelters or on the
streets. Others die in hospital with long lengths of stay, compli-
cated by lack of surrogate decision-makers. Innovative palliative
care shelter programs for the homeless are described in the lit-
erature. For example, the Ottawa Inner City Health Project offers
shelter-based palliative care for people who are homeless, have
no caregivers, lack financial resources, and are diagnosed with a
life-threatening illness. Forty percent of these clients have schizo-
phrenia. Clients receive shelter, meals, daily nursing, 24-hour phy-
sician coverage, and transportation to hospital for appointments.
Harm reduction is promoted in place of abstinence through clean
needles, a smoking area outside the shelter, and dispensing 14 g
of alcohol daily. Mean length of stay before death is four months.
The authors point out that the clients of the program could not be
placed in alternative palliative care settings because of disruptive
behaviors or refusal of other placements based on suspiciousness
of institutions and restrictions imposed on lifestyle.104
SUMMARY
The gap in life expectancy between people with schizophrenia and
those without mental disorder has increased over recent decades;
patients with schizophrenia appear to not have benefited from
advances in disease prevention and disease management that have
spurred steady increases in life expectancy among the popula-
tion without mental illness. One-third of cancer deaths would be
prevented with early detection.105 In order to benefit from these
advancements, healthcare systems must develop specialized
screening approaches for the mentally ill. Key issues for improv-
ing cancer prevention and care may include greater integration
of cancer screening into mental healthcare, individualizing and
modifying cancer treatments for patients with schizophrenia
by taking into account difficulty tolerating some types of care,
developing systems for surrogate decision-making for the unbe-
friended, and examining the special palliative needs of patients
with both schizophrenia and cancer at the end of life.
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mental health system. Am J Psychiat. 2005 Feb;162(2):370376.
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104. Podymow T, Turnbull J, Coyle D. Shelter-based palliative care for
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105. World Health Organization. Cancer. Fact Sheets 2014.
 CHAPTER 45
Difficult Personality Traits
and Disorders in Oncology
John D.Wynn
I do not like that man. Imust get to know him better.
Abraham Lincoln
INTRODUCTION
A cancer diagnosis is a crisis. Many cancer patients experience
extremes of emotional, cognitive, social, and spiritual strain. Many,
perhaps most, patients cope effectively within their premorbid rep-
ertoire of responses, experiencing only transient dysfunction. They
compensate effectively with the disruptions of their bodily func-
tions, self-image, work, and relationships. They can accommodate
the life changes without overwhelming strain. They have a flexible
self-concept and supportive, understanding people to helpthem.
Some patients, however, are not as resilient. Their established
ways of coping do not meet the challenge, and they respond to
crisis with self-defeating, isolating, alienating strategies that sty-
mie the most well-intentioned and sophisticated clinicians. They
may be experienced by staff as aggravating, aggrandizing, chaotic,
dramatic, or odd, and their dysfunctional responses may appear
as attempts to foil treatment or to monopolize resources.
Staff may experience feelings of anger, disinterest, neglect,
and guilt, or even extreme feelings such as hatred. Despite their
attempts to cope with such strong and unprofessional feelings,
the staff may view the patient as unreachable, uncooperative,
bizarre, dramatic, or demandingin other words, impossible.
The question that should arise in such instances is, Why, in a
setting of care and attention, when most patients are so compliant,
would this person behave so badly? Furthermore, how could caring,
thoughtful, hardworking clinicians be so angry, impatient, frus-
trated, or dismissive of a patients suffering?
The psycho-oncology consultants role is to identify dysfunctional
working relationships among patients, family, and staff, and to
facilitate quality care for all patients. This is an especially challeng-
ing task when working with the patients discussed in this chapter.
DEFINING DIFFICULT PERSONALITY TRAITS
AND DISORDERS IN ONCOLOGY SETTINGS
Elements of Personality Functioning
Section III of the Diagnostic and Statistical Manual of Mental
Disorders (5th edition; DSM-5) presents a conceptual model of
personality that incorporates disorders of self and interpersonal
functioning.1 Self is manifest in identity and self-direction, refer-
ring to the long-term stability and integrity of ones self-image and
orientation around internal standards and goals. Interpersonal
functioning is expressed in ones capacity for empathy and inti-
macy, referring to how we understand others feelings and our
impact on them, as well as our ability to connect with them at
various levels of intimacy. Deficiencies in any of these areas lim-
its coping with stressful situations. This may be through misper-
ception of oneself and others, an inability to organize behavior
around internal and interpersonal demands and expectations, a
lack of strategies for integrating those demands, or a failure to
develop social ties in times of need. The misperceptions and lim-
ited repertoire are expressed in character rigidity.
Character Rigidity
All patients long to trust someone who will understand their pre-
dicament and respond compassionately to their needs. Clinicians
easily overlook how terribly stressful routine medical care can
be for personality disorder patients. Close contact activates feel-
ings of fear and, at times, desperate maneuvers to avoid emotional
vulnerability and pain. Feelings of shame and guilt may interfere
with expressing these needs, leading to fears of being forgotten,
abandoned, or rejected. Interpersonal difficulties are caused by
idiosyncratic perceptions, distorted cognitions, unstable or con-
fusing affects, and troublesome behaviors. Labeling patients and
their distortions is of little value. Addressing their fears with care
and reassurance, however, will go a long way to resolving conflict
and supporting patients, families, andstaff.
The essential presenting feature of a personality disorder is char-
acter rigidity: a limited ability to think about oneself and others in
varied or new ways, combined with a limited repertoire of behav-
iors that may be counterproductive in challenging circumstances.
Distorted cognitionsways of perceiving and interpreting self,
others, and eventssurface as differences with staff, conflicts
with family, or preoccupation with specialness, suspicions, guilty
rumination, or self-criticism.1
By definition, the personality disorders of the DSM-5 comprise
stable and enduring patterns of thinking, feeling, and behaving.
In fact, however, personality features and disorders are not stable
over time.27 In longitudinal studies, many patients are found to
meet other personality disorder diagnostic criteria, or to have no
 Chapter 45
diagnosis at all. In one study of college students, change was typi-
cally and uniformly in the direction of decreasing personality dis-
order features over time.5
Clinicians must use caution when assessing troubling behaviors
occurring in difficult circumstances. Responses to crisis may be
mistaken for long-standing patterns of behavior.3,5 Maladaptive
responses may only represent an initial stumble in a steady
march from diagnosis through treatment:Ms. North, admitted
in October, may be very different from the Ms. North we met
lastMay.
Clinicians often underestimate patients potential for improve-
ment over time.8 Properly addressed, troubling behaviors often
lead to maturation and emotional growth.9 A personality dis-
order diagnosis may be wrong, and yet indelibly, authoritatively
inscribed in the patients chart, only to mislead subsequent
clinicians.
DSM-5
The DSM-5 classifies personality disorders into three categories,
or clusters, of disorders:(A)odd or eccentric; (B)dramatic, emo-
tional, or erratic; and (C)anxious or fearful. These are listed in
Table45.1.
Personality disorders may establish the context in which
mood, anxiety, and other mental disorders take place: schizoid
and schizotypal patients are more vulnerable to psychosis; bor-
derline and narcissistic patients are prone to depression, irrita-
bility, and egotism; and cluster C patients often develop anxiety
disorders.1014 Personality disorders increase exposure and vul-
nerability, perhaps through a distortion of social perception and
alienating interpersonal styles.1517 Distorted perceptions isolate
patients, leaving them without social buffers against adverse life
events. Solitary coping is less effective and reinforces aberrant pat-
terns of thinking, feeling, and relating.
Alternatively, other disorders may be precursors to personality
disorder.18,19 Chronic mood, anxiety, or substance disorders may
restrict social interactions and may obscure opportunities to learn
social coping strategies. This restricted repertoire of interpersonal
interactions constitutes the character rigidity that defines person-
ality disorders.
In one large study, patients with schizotypal and borderline per-
sonality disorders were found to have significantly more impair-
ment at work, in social relationships, and at leisure than patients
with major depressive disorder. 20 Patients with co-occurring
personality and mood disorders fare even worse than those with
mood disorder alone:spontaneous remission rates and treatment
responses are worse when disorders co-occur.15,17,18,2128 In this
light, personality disorder might be seen as a severity marker
for other major mental disorders. Perhaps personality disorders
are neither cause nor consequence of other mental illness, but
merely occur beside the others, with overlapping symptoms or
diatheses.16 This comorbidity alone may suffice to worsen patient
outcomes.
The DSM-5 Personality Disorders
Clinical characteristics of patients with personality disorders are
listed in Table 45.1. The DSM-5 diagnostic categories represent
extremes that are rarely encountered, 29 and the typical patient
meeting criteria for a specific personality disorder frequently
also meets criteria for other personality disorders (p.761).1 Note
difficult personality traits and disorders 357
especially that the vast majority of uncooperative patients do not
have a personality disorder. Nevertheless, the DSM categories
provide us with clear examples of personality dysfunction that
strongly correlate with functional impairment and human suf-
fering.17,20,3033 Understanding these types sensitizes us to their
manifold presentations and strengthens our treatment strategies.
ClusterA
The odd or eccentric patients of cluster Aall struggle with some
degree of social discomfort. Interpersonal closeness may be
unpleasant or simply of no interest, leading to avoidant and frankly
odd behaviors. 34 Getting to know cluster Apatients may be not
only difficult, but actually alienating or frightening for the patient.
Like many patients, this 37-year-old woman brought her favorite
pillow and stuffed animal into the hospital with her. After sev-
eral days, staff became aware that she consulted her teddy bear
regarding difficult treatment decisions and urged her husband to
bring several other trusted plush toy counselors from home. She
arranged the dolls at her bedside and grew angry if they were dis-
turbed around bedtime.
Social alienation can be increased by cluster A patients
unusual beliefs. Magical thinking and frankly paranoid ideas
may be alarming to staff. Patients may experience others judg-
ments with blithe indifference, total ignorance, or dramatic
secrecy breached only with selected staff. At times, patients
unusual beliefs get in the way of proper care. Standard proce-
dures are experienced as menacing, routine questions feel like
threatening interrogation, and innocent jokes are deeply offen-
sive. Uncovering these treatment-foiling beliefs or attitudes can
be quite difficult, often requiring collateral interviews with fam-
ily, friends, or trustedstaff.
ClusterB
Cluster B patients may also be particularly vulnerable in medi-
cal settings, especially when circumstances demand high levels
of stress tolerance, decision-making, and shifting relationships.
Uncomfortable with the passive role that many patients readily
adopt, they need frequent reassurance that they are valued and
safe. The subgroupsantisocial, borderline, narcissistic, and
histrionicare distinguished by their reactions to interpersonal
ambiguity or strain.
Antisocial Patients
Antisocial patients are often extraverted (socially outgoing) and
manipulative: their focus is on interpersonal advantage. When
secure, they may be pleasantly thoughtful and ingratiating, even
charming. They engage others not so much for security or affec-
tion, however, but for leverage and dominance:all relations are
ultimately seen as instrumental, that is, as means to particular
ends. Rageful, even violent reactions may occur when they feel dis-
advantaged or threatened. The change of attitude may be shocking
(and frightening) to staff unaccustomed to the sudden appear-
ance of rude, demanding, demeaning, or threatening behavior.
Threatseven escalating to physical violencemay dissipate as
soon as the desired result is obtained; the patient will then express
surprise at others angry, distancing reactions, as if their distress-
ing behavior were well within acceptable norms. Nonchalance in
violating accepted norms is the hallmark of the disorder.
Table45.1 Personality Disorders:Diagnostic Features and Typical Interactions With ClinicalStaff

Diagnosis Dominant Features Typical Caregiver Interactions Helpful Interventions Diagnostic Confounds, Rx Options
Cluster A: Paranoid Difficulties understanding Patient may make angry Take extra time to explain and Consider schizophrenia, psychotic
others actions, accusations, withdraw from clarify problems and procedures, depression, and mixed mania.
especially distrust and staff. Staff have difficulty expect need for repetition and Autism spectrum disorders,
suspiciousness; others engaging and may feel reassurance. limbic encephalitis, frontal abulia,
motives are interpreted misunderstood and wrongly Seek out patients understanding steroid psychosis, or aphasia may
as malevolent. accused. ofproblems and procedures. be mistaken for the detachment
Deteriorate under stress. and eccentricities seen in Cluster
Apatients.
Schizoid and Schizotypal Social detachment, Patient perceived as odd, even Recognize diminished needs Psychotic symptoms respond only
restricted range of frightening by staff, who thus for interpersonal connection weakly to neuroleptic treatment,
emotional expression misinterpret patients intent and lesser skills in relating to but trial of an antidepressant or
masks shame and feelings and needs and do not perceive others. Explain restricted range atypical neuroleptic may reduce
of inadequacy. intense anxiety and suffering. to staff and reassure regarding comorbid depression and anxiety.
Acute discomfort in close unusual behaviors, especially Non-psychotic patients are often
relationships, cognitive unfriendliness. Encourage more sensitive to neuroleptic side
or perceptual distortions, simple, straightforward social effects; start low and go slow.
and eccentricities of interactions without humor, irony,
behavior. or sarcasm. Beware of interpersonal
over-stimulation.
Cluster B: Antisocial Disregard for and Staff split between feeling Anticipate, educate, and address All Cluster B:Mood disorders,
violations of the rights of special and rejected; patient splitting. Encourage staff to discuss especially bipolar II (hypomania).
others. has angry outbursts that various impressions and to share Depressive disorders are common
exacerbate staff splits; staff information with one another. complications, especially with
feel seduced, deceived, loved, Reinforce what is to be done and threats of surgical disfigurement,
manipulated. Patient responds who will do it, address needs for diminished autonomy, and increased
to confrontation with glib consistent, coherent responses to need to trust others.
explanations of outrageous complaints, demands, and threats.
behavior or sham contrition.
Borderline Unstable relationships, Patient is panicky and needy, Clarify dysfunctional help-seeking Frontal disinhibition syndromes due
self-image, and affects, stimulating staff fantasies of style and disentangle (un)realistic to brain tumor, corticosteroids, drug
with marked impulsivity. specialness and rescuing the expectations withoutblame. abuse (intoxication), or delirium
Intense sensitivity to patient (e.g., from other staff). Be alert to bargaining, seduction, may cause marked impulsivity and
threats of rejection or Staff reactions range from and manipulation. socially inappropriate behavior.
abandonment. deepattachment to hatred
Reassure patient and facilitate staff
andaggressive fantasies.
alignment with role and task clarity.
Help staff appreciate and discuss
their own emotional responses,
especially anger, neediness, and low
self-worth.
Histrionic Excessive emotionality Staff repelled by dramatic Reduce polypharmacy when
and attention seeking. attention seeking, but may possible; consider episodic use of
experience sexual attraction antidepressant, antipsychotic, and
and arousal; splitting. anxiolytic medication.
Narcissistic Grandiosity, need for Angry outbursts, pitiful
admiration, and lack of apologies, dramatic withdrawal.
empathy. Staff feel special or worthless;
patient demanding
and unreasonable or
misunderstood and special.
Cluster C: Avoidant Social inhibition, feelings Patient seems fearful or Explain patient vulnerability and Depression, social anxiety disorder,
of inadequacy, and uninterested, staff feel clumsy, aversions tostaff. and obsessive-compulsive disorder
hypersensitivity to intrusive, or unjustly accused Attend to dependency needs are obvious overlap syndromes.
negative evaluation. of same. to the extent that they do not
compromise staff or disrupt
patientcare.
(continued)
 Chapter 45 difficult personality traits and disorders 359

Table45.1(Continued)

Diagnosis Dominant Features
Dependent Submissive, clinging
behavior from excessive
need to be taken care of,
and terrible fear of being
alone. Helpless, guilty,
and indecisive.
Obsessive-Compulsive Preoccupation
with orderliness,
perfectionism, and
control.
Typical Caregiver Interactions Helpful Interventions
Patient needy, demanding,
childlike, and vulnerable. Staff
feel protective or repelled by
excessive demands for care and
attention.
Patient may seem the ideal
patient, or staff may feel
their performance is being
monitored and harshly judged.
Describe and explain problems and
procedures; give patient options
and clear role in decision-making as
tolerated. Return locus of control
to patient whenever possible.
Encourage staff discussion of their
own sensitivities, dependency
needs, and meticulousness.
Diagnostic Confounds, Rx Options
Depression is common, as
are generalized, phobic, and
obsessive-compulsive anxiety
disorders.
Mood, neurovegetative, and
disruptive anxiety symptoms
strongly urge an
antidepressant trial that may efface
dependent or avoidant behavior.2

Abbreviations:OT=occupational therapy; PT=physical therapy.

Adapted from:Shedler J, Westen D.Refining personality disorder diagnosis:integrating science and practice. Am J Psychiatry. Aug 2004;161(8):13501365; American Psychiatric
Association. Task Force on DSM-5. Diagnostic and Statistical Manual of Mental Disorders, 5th ed. Washington, DC:American Psychiatric Association; 201; Fava M, Farabaugh AH,
Sickinger AH, etal. Personality disorders and depression. Psychol Med. Aug 2002;32(6):10491057.

Borderline Patients
Borderline patients may exhibit many of the same behaviors,
but tend to be less organized and less in control. They are more
likely to be self-destructive than threatening to others, and pursue
relationship attachments for their own sake rather than interper-
sonal advantage per se. Under duress, their perception of others
is distorted by black-and-white thinking that sees only enemies
and allies, without nuance. They respond to distress with impul-
sive desperation that may include sexual adventurism, substance
abuse, and self-mutilation. Offers of nurturance may be surpris-
ingly sexualized, for example, a nurses eagerness to provide
physical comfort may be experienced as seductive, or a physicians
concern may be seen as an offer of lifelong affection.
Margaret is an attractive 42-year-old twice-divorced attorney with
recurrent bronchitis. A recent chest X-ray revealed a small lung
mass. Hours after a difficult meeting with her oncologist, she has
paged the physician on call to ask more questions about the diag-
nosis and treatment. After a few minutes of conversation with the
empathic doctor, Margaret begins to cry and asks, Can you meet
me somewhere? Ireally need to talk this over.
The doctor, a bit taken aback, replies, I know you are worried
about all of this, but Ithink you should talk things over with your
oncologist.
You seem so much more compassionate, she explains. I feel like you
really understand what Im going through. Your office is right next door
to my doctors, isnt it? Isaw you earlier today. You have such a warm
smile, such a kind way with everyone around you. Are you married?
Borderline and antisocial patients dramatic behavior may be
seen as goal-oriented and manipulative, but for the borderline
patient it is more often simply an immature, ineffective way of
expressing extreme distress. It is striking to see the disparate
responses of involved clinicians to these behaviors:some will be
angry and alienated, while others are moved to tears and desper-
ate rescue. Staff conflict may ensue. This staff splitting is a com-
monplace in work with borderline patients: multiple clinicians
working on the same team experience the patient very differently.
Productively responding to the patient can tax even the most
experienced clinicians.
Histrionic and Narcissistic Patients
Histrionic and narcissistic patients are far more predictable and
less threatening. Like the borderline, they are motivated by a need
for love and security rather than simple interpersonal advan-
tage. But while the borderline is often eager to be whatever the
person before her demands, histrionic and narcissistic patients
have a much more solidly established personality and sense of self.
Histrionic patients are pervasively attention seeking: it is their
dominant mode of relating to others, whether or not they are in
distress. Rather than feeling manipulated, staff tend to feel enter-
tained, exhausted, or, eventually, bored and annoyed. Histrionic
patients will elaborate dramatic stories, offer fantastic rewards,
and look for special treatment. Both borderline and histrionic
patients may be highly intolerant of being alone; the former needs
to be reassured that she is loved, the latter to be reminded that she
is stillalive.
The narcissistic patient is the least likely of the cluster B patients
to elicit psychiatric consultation. The medical care setting, directed
toward the patients comfort and well-being, may be experienced
as supremely reassuring. But the narcissist responds to interper-
sonal threat by highlighting deficits in others. The feelings that
narcissistic patients arouse in staffincluding guilt, shame, and
inadequacyare often very hard for staff to identify as emanating
from the patient rather than originating in themselves.
Although instrumentally oriented like the antisocial patient,
seeing others as means to his or her own esteem and gratification,
the narcissist feels and often gets others to feel that he deserves
whatever he wants. When ill, he is whiny and demanding, even
infantile and petulant. Mature nursing staff will quickly identify
the narcissist and simply become more efficient in meeting his
needs while dismissing unreasonable behaviors and demands.
Less sophisticated clinicians, however, may find themselves feel-
ing the low self-esteem, guilt, and self-doubt that reside at the core
of the narcissistic personality.35
360 Section VII psychiatric disorders
ClusterC
Avoidant Patients
Avoidant patients experience extremes of social inhibition that
may extend to all interpersonal relations. Some will avoid all
human touch whenever possible, making inpatient care extremely
difficult. The patient may freeze, panic, or dissociate. Puzzled staff
responses may reveal their own elevated sensitivity to negative
evaluation, manifesting as withdrawal, depression, or overt anger
in response to the patients disinterest, aversion, and avoidance.
Dependent Patients
Dependent patients tend to be extremely compliant and submis-
sive and are thus less likely to elicit staff complaint. Their high
degree of deference, clinging behavior, and intense need for direct
care may overtax clinicians, especially nurses running interference
for physicians. In extremis, these patients demonstrate regressive,
childlike neediness that may elicit or deter staff attention.
Obsessive-Compulsive Personality Disorder(OCPD)
Obsessive-compulsive personality disorder (OCPD) must be dis-
tinguished from obsessive-compulsive disorder (OCD). OCD
manifests with ritualized thoughts and behaviors that interfere
with daily activities. OCPD presents as a preoccupation with
orderliness, perfectionism, and control that clinicians may find
endearing, inspiring, or maddening. For the most part, these
patients are not clinically problematic; they are more likely to be
seen as ideally organized, adherent, and predictable.
Etiology
The personality disorders encompass very heterogeneous groups
of people with wide varieties of family makeup, developmental
history, traits, and disease course. No single cause will suffice
to create adult traits or disorder. Genetic endowment, parental
influences, social learning, and trauma are well-established con-
tributors.36,37 The cluster B disorders, for example, may be seen as
resulting from an amalgam of genetic predisposition, childhood
neglect, and lack of developmental resources.38
Genetic influences may impact the regulation of affects,
impulse/action patterns, cognitive organization, and anxiety/
inhibition.14,3840 Heritable traits may include deficits in recruit-
ment of brain mechanisms of emotion regulation, and this pro-
cess may be potentiated by...particularly stressful or negative
contexts.41 Compelling epigenetic studies link genetic endow-
ment and early life experience to phenotypic expression in adrenal
reactivity, stress tolerance, and other personality traits, perhaps
even suicidality.35,38,42 This may explain the stymied maturation
of brain mechanisms regulating impulse control and identity
formation.
These mechanisms may be impacted more acutely as well.
Orbitofrontal insult from trauma or surgery may be associ-
ated with new onset of personality disorder features, reflecting,
for example, regional dysfunction in antisocial and borderline
disorders.14,41,4346
Epidemiology
Personality disorders are infrequent in the general population,
but far more common in general medical outpatient and inpa-
tient populations.4649 The low frequency may reflect stringent
criteria that demand extreme forms of disorder to reach diag-
nostic thresholdor the reluctance of such troubled people to
participate in surveys. Medical care invites some behaviors,
including dependency, passivity, and attention seeking, perhaps
reinforcing them in cancer patients with pre-existing personal-
ity pathology.
The association of substance abuse disorders with head and
neck and esophageal cancers suggests that they may be more fre-
quently associated with personality disorder. 50 Adequate studies
have not been done to substantiate these suspicions, however.
Diagnostic Challenges
The distinction between normality, major mental disorder, and
personality disorder has vexed clinicians for over a century.37
Kraepelin observed that wherever we try to mark out the frontier
between mental health and disease, we find a neutral territory, in
which the imperceptible change from the realm of normal life to
that of obvious derangement takes place (p.295).52 This is espe-
cially true of personality disorders, which present on a continuum
with normal adaptive behavior, and yet often overlap genetically
and phenomenologically with other mental disorders.36,37,5356
Establishing a personality disorder diagnosis presents mul-
tiple challenges. Rapport with such patients is by definition dif-
ficult, and is often the reason for consultation. Much time may be
required to avoid premature diagnostic closure, to sort through
the range of traits, to assess their stability over time, and to link
them to significant dysfunction. The presence of long-standing
dysfunction is clearly not enough: concomitant mood, anxiety,
or psychotic disorder, substance abuse, and circumstantial chaos
may be more causative than the patients personality per se. The
traits must be the cause of significant functional impairment or
subjective distress.1
Akiskal argues forcefully that careful assessment of many bor-
derline personality disorder patients will reveal a bipolar mood dis-
order.11 Gunderson provides strong biologic and phenomenologic
data in rebuttal, however.57 This controversy, along with much data
regarding the evanescence of personality disorder diagnoses, cau-
tions us regarding the hazards of superficial assessment and pre-
mature diagnostic closure.58 There is no substitute for a detailed
history, sensitively elicited and supplemented by collateral sources.
Cultural determinants of coping behavior must also be
addressed, including beliefs that might be mistaken for magical
thinking, fastidiousness misconstrued as compulsive neatness, or
dramatic self-expression confused with histrionics.59
Hazards and Value of Diagnostic Labeling
in Oncology Settings
It is not surprising that some patients are hard to engage in com-
plex cancer treatment. But clinicians fear, ignorance, and frus-
tration may lead to pejorative labeling and a downward spiral of
clinician frustration, mutual avoidance, and patient deterioration.
Apersonality diagnosis may be less a guide to diagnosis and treat-
ment than dismissive shorthand applied to a difficult patient.
Skillfully used, however, the diagnosis will help staff recognize
the morbidity and suffering of patients with personality disorders.
Anamed illness with established treatments can demystify and
destigmatize the patient, and can reduce staff helplessness, frus-
tration, and anger.5963 Diagnostic clarity often gives staff permis-
sion to express frustration, anger, or guilt over their own feelings
and behaviors. Awareness of avoidant, paranoid, shame-prone,
or rejection-sensitive vulnerabilities allows staff to address their
 Chapter 45
own feelings of rejection, guilt, or sadism that personality disor-
der patients may engender. Above all, the diagnosis should help to
shape patient-clinician interactions around a set of problems and
solutions.60-63
MANAGEMENT OF PATIENTS WITH
DIFFICULT PERSONALITY TRAITS
ANDDISORDERS
Diagnostic assessment of disruptive behavior should be
approached with an emphasis on interactions between patients
and staff. Most difficult patient encounters may be organized into
a small number of such interactions.
General Principles in Working With Personality
Disorder Patients
Cluster A:Patients Who Are Odd or Eccentric
Seek out the patients understanding of what is happening.
Take extra time to clarify problems and procedures; expect need
for repetition and reassurance. When possible, engage familiar,
trusted friends or family members to support, encourage, and
reassure the patient.
Recognize diminished needs for interpersonal connection
and limited skills relating to others. Beware of interpersonal
overstimulation.
Explain restricted range to staff and reassure regarding unusual
behaviors, especially unfriendliness.
Encourage simple, straightforward social interactions without
humor, irony, or sarcasm.
Cluster B:Patients Who Are Dramatic, Emotional, or Erratic
Anticipate, educate, and address staff about splitting.
Encourage staff to share information and discuss differing
impressions with one another.
Engage familiar, trusted friends or family members to support,
encourage, and reassure the patient.
Reinforce clear staff and patient roles and responsibili-
ties, especially the need for consistent, coherent responses
to complaints, demands, and threats. Clarify dysfunctional
help-seeking style and disentangle (un)realistic expectations
withoutblame.
Be alert to bargaining, seduction, and manipulation.
Reassure patient and facilitate staff alignment with clarity of
roles and responsibilities.
Help staff appreciate and discuss their own emotional responses,
especially anger, neediness, and low self-worth.
Cluster C:Patients Who Are Anxious or Fearful
Describe and explain problems and procedures; give patient
options and clear role in decision-making as tolerated.
Return locus of control to patient whenever possible. Engage
familiar, trusted friends or family members to support, encour-
age, and reassure the patient.
Explain patient vulnerability and aversions tostaff.
difficult personality traits and disorders 361
Attend
to dependency needs to the extent that they do not com-
promise staff or disrupt patientcare.
Encourage staff discussion of their own sensitivities, depen-
dency needs, and meticulousness.
PROBLEMATIC PATIENT ENCOUNTERS
Regardless of the DSM diagnosis, clinical personnel find
patientstobe
Lost, overwhelmed and chaotic;
Seeking, thoughtful, misguided, and uncooperative;
Smiling, superficially agreeable but foilingcare;
Limitless, needy, or over-entitled;
Baffling, perplexing, frightening, or repellent;
Anomalous, odd, confusing, or daunting.
Lost
Some patients may disagree with the care plan because they do
not understand explanations of the disease or the treatments, or
because the information is so overwhelming that they cannot col-
laborate effectively with the care team. We may see them as over-
whelmed and chaotic:
Roberta was 29 years old when her suspicious mammogram led
to an abnormal biopsy and, the day after her sons first birthday,
a diagnosis of cancer. The oncologist explained to this intelligent,
thoughtful, bewildered woman that she had a ductal carcinoma in
situ that would require lumpectomy and a brief course of radiation
therapy. An excellent outcome was all but assured.
Robertas response was to sit down and make a list of women for
her husband to date after her death. She became irritable, tearful,
and angry. She consulted megavitamin gurus and researched alter-
native treatments on the web. She refused to return to the oncologists
office. Anguished and desperately suicidal, she drafted a farewell let-
ter to each of her family members, including one to be read to her son
on his thirteenth birthday. Despite her minimal disease and excel-
lent prognosis, no matter who tried to reassure her, all she could hear
was the first thing her oncologist had told her:you have cancer.
Roberta demonstrates extreme narcissistic vulnerability and
fears of abandonment, along with unstable identity, mood, and
impulse control. These borderline traits are dramatically expressed,
leaving those around her as bewildered as she is. But Robertas fran-
tic behavior diminished as she gradually yielded to the pleas of her
family and friends to again review her diagnosis and treatment plan.
The oncologist patiently re-explained what to expect, she discussed
her fears of disfigurement and death with a cancer psychiatrist, and
an oncology social worker helped Roberta meet other breast cancer
survivors who demonstrated better coping strategies.
Overwhelmed and confused patients like Roberta are lostthey
foil care because they cannot take in the information and work
with the team. They experience the diagnosis and plan as too
much, too fast, and they panic. We err by using jargon or oth-
erwise missing the level at which a particular patient should be
approached. Or we may simply misread a superficially agreeable,
compliant patient.
362 Section VII psychiatric disorders
The clinician may take time to carefully and thoroughly pres-
ent information, leaving ample room for questions, only to find
that the patient adamantly refuses to cooperate. These patients
are hard to read, because they appear calmer than they feel, they
have difficulty relating to authority figures, or they simply fear or
detest the patient role. They demand our best clinical communi-
cation skills. We have to repeatedly back up and make sure we
understand what they heard us say, not just the factual details,
but especially the meanings and consequences. Eye contact, body
language, and patience are essential.63 And check at each step for
signs of miscommunication and mistrust.
Seeking
Oncology patients are increasingly educated by an infinite
array of information sources. Disagreements with the care
plan may stem from differences in expert opinion or from the
intrusion of unproved (or disproved) therapies. The patients
feel they have valuable information that contradicts what the
care team is offering. They rationally disagree with the care
plan, demand care that the team feels is not indicated, or refuse
treatments considered essential to survival. Oncology staff
may see them as thoughtful and misguided, or odd and irk-
some. Such patients may prefer complementary or alternative
cancer treatments with clinicians they find less threatening or
more reassuring.
Sometimes we are arguing with folk beliefs that have great cur-
rency in certain ethnic groups. For example, you should never
have surgery for cancer, because when the air hits the tumor it
spreads everywhere.59,64,65
Such uncooperative patients are often thoughtful, rational,
and misinformed. Their ignorance is sometimes misread as a
refusal to cooperate with care when in fact it is precisely the oppo-
site: by seeking they are trying to join the treatment team and
collaborate. When treated with consideration and respect, they
routinely come aroundor get the medical team to reconsider
their recommendations.
Smiling
Patients may agree with the care plan but may not behave in the
way that staff expect: they may miss scheduled appointments,
lab draws, examinations, and consultations. They dont stick to
the treatment plan, even after they appear to understand and
agree. The cues we expect when people disagree never surface.
Everything looks fine until they have to follow through.
Overwhelmed by the facts, these smiling but mistrustful, fear-
ful, or anxious patients may anticipate disapproval or punishing
responses to their questions or problems. Lengthy, detailed con-
versations may be entirely forgotten, because anxiety prevents
them from taking in the information. And the odd patient, preoc-
cupied with unusual beliefs and fears, just has a different, often
unpredictable way of hearing and responding that the clinician
may not fully appreciate.
The perfect patient is an interesting variant. Passively coop-
erative, these patients never complain or object. Uncertain
of how staff will react to their disagreement, they smile and
go their own way or obey with mounting anxiety. These ideal
patients may fare the worst at the end of treatment, when they
find the reward for their obedience is not cure, but long-term
surveillanceorworse.
Again, we may be misreading their understanding of the facts and
consequences of care, or we may be under-appreciating how much
their emotional responses are interfering with their ability to act
on the information. These patients should be carefully questioned about
the treatment plan, with special attention paid to their reluctance to
disclose unspoken fears:the emphasis must be on shared understand-
ing, rather than the shared commitment that will hopefully follow.
Limitless
Some patients understand, agree, participate with care as planned,
and drive the staff batty:they talk at great length, call frequently,
and ask infinite questionsor the same questions over and over.
Others do everything as clinically expected, but the rest of their
life takes over and complicates the clinician-patient relationship
beyond recognition. Clinicians find these patients needy and
demanding, clinging, or over-entitled.
Such patients run the gamut from the anxious but endearing
elderly woman to the obsessive-compulsive young man who always
has just one more question. They may be anxious worriers or odd
ducks with magical thinking, but often, with time and familiarity,
what emerges is that they are terribly lonely and scared.
The treatment team is their newfound and only social outlet, and
they have a difficult time managing the attachments. Every test,
every drug, every side effect, risk-benefit ratio, or research contro-
versy is another opportunity to engage and not let go. The technical
aspects of the medical setting are tickets to the world of clinicalcare.
These patients cry out for reassurance and constancy: they
need to know that the team will stand by them. Every superfluous
question is another plea for a reliable caretaker; any rebuff is an
affirmation of their worst fears, namely, that you will not be there
when they really need you. Such patients generally respond well
to clear, compassionate boundaries, as long as they are accompa-
nied by calm, reassuring office visits. They are brilliant readers of
body language, so the clinicians words and actions must be con-
sistent. Remember to use lots of eye contact (theyre used to being
avoided), and keep your hand off the doorknob until the visit is
officially (and explicitly)over.
Alternatively, it may be the patients advocatesfamily members,
well-intentioned friends, or clergywho frustrate clinical staff. The
patient may express helpless frustration or passive acquiescence, but
however they handle things, the family becomes the problem.
The patient is not actually limitless, and neither are you. Presence,
clarity and consistency, reassurance, and clear boundarieswhen
you are available, what you can offer, and what you cannotwill
go a long way to engaging without over-engaging or alienating
these patients and caregivers.
Baffling
Some patients do everything we require of them, but they do other
things that perplex, frighten, or repel. They may threaten, alienate,
or seduce us, leaving us feeling like the vulnerable person in need
of specialized care. These patients, because of their dramatic pre-
sentations and emotionally challenging engagements, can bring
out the worst in us. We feel a need to fight or flee, to put them in
their place or take them home with us, to kick them out or kick
ourselves. We may label them out of frustration or anger:crock,
kook, borderline,crazy.
The seductive patient presents a more sophisticated version of the
previous limitless, clinging group. Rather than clinging with infinite

questions or requests, such patients invite us into their lifes drama.
They convince you that you are very special, that you are the only
one who understands their dilemmas, and that only your powers
will suffice. Of course, once you sit down with your team, you realize
that everyone gets that message from the patient:only you can help
me! We feel drawn in and may not realize how involved we are until
we wake up in the middle of the night, wondering how to extricate
ourselves without giving up our values of gracious, compassionate
care. Recalling the story of Margarets after-hours phone call,above:
Margaret is obviously frightened and in need; she is asking for comfort
and reassurance; you dole out comfort and reassurance all day. Youre
still at the office, you havent had dinner yet, she is only a short drive
awaywhat could ithurt?
The answer is to be mindful of your position and your limitations.
Consider the role(s) you have taken on, the tasks you perform, and
the constraints of time and place that define your roles and respon-
sibilities. Are you responding to requests beyond these roles, tasks,
and situations? Are you the only one who can fulfill these requests?
Generally speaking, the more unique you feel, the more the patient
needs a team approach. If you find yourself increasingly drawn to
special care arrangements with the patient, consider transferring
care to a colleague. Your worst fantasies about the patients reac-
tion to your rejection are still better than the path to increasing
entanglement, confusion, and catastrophe. At the very least, if you
are uncomfortable or preoccupied with a clinical relationship, dis-
cuss it with a colleague who can help you think it through.
Threats and instances of self-harm should be seen as a means
of managing emotional pain and not as a deliberate attempt to
control others.60 Oncology staff focused on patient survival may
feel betrayed by such behavior, and it is important to distinguish
among dramatic help-seeking, despondent suicidality, and ratio-
nal euthanasia.66,67 Confusion in such situations should prompt
psychiatric or clinical ethics consultation.
Anomalous
While not exactly uncooperative, some patients still do not meet staff
demands or expectations. They may appear distant or needy in
ways that are oddly unresponsive, incurious, or passive. This inert,
unreactive style sometimes alternates with prolonged, dispropor-
tionate distress that demands additional time from nursing and phy-
sicians. The staff winds up feeling confused, disoriented, and guilty,
incapable of connecting through collaboration or consolation.
Clinicians often over-read such odd patients. Their distance
may be interpreted as a retreat or withdrawal, while in fact it is
just their comfort level to stay apart. Their emotional storms are
confusing, overvalued, or underappreciated. They dont know
how to use the interpersonal supports offered by staff; their habits
and skills are in righting their own ships without ballast or direction
from others. Only patience, trial, and error can reveal and repair
the mismatches of expectations and understanding.
The Consultants Role:Enhancing Resilience
of Patients With Personality Disorders
As with all patients, the consulting psycho-oncologist must use
and provide a biopsychosocial perspective (see Table45.2):
Identify destabilizing biological influences:medication, tumor
effect, infection, sleep deprivation, malnutrition, and physical
deconditioning;
Chapter 45 difficult personality traits and disorders 363
Clarifypsychological dysfunction: depression, hopelessness,
psychosis, emotional lability, cognitive distortions, irritability,
impulsivity, and passive resistance;
Address social complications:legal or financial problems, fam-
ily chaos, staff conflicts, and distortions of social perception;and
Give voice to spiritual needs: loss of faith, despair, preoccupa-
tions with persecution abandonment.
Personality disorders are treatable conditions. Multiple treat-
ment modalities can reduce symptoms of depression and
anxiety, enhance global functioning, and improve social adjust-
ment.8,9,26,6774 Even with adequate skills, however, treatment can
be challenging, frustrating, and prolonged. 21,22,69
Proper care of patients with personality disorders demands
patience and creativity. Regardless of the patients diagnosis,
interpersonal problems are generally most prominent at the time
of consultation. An empathic, supportive approach demands
attention to the stage of treatment and essential areas in which the
patient needs immediate assistance. This will often require atten-
tion to biological, psychological, and social dimensions, any of
which may be threatened throughout the course of cancer care.76
Psychotherapy and medication strategies developed to pre-
vent or diminish trauma-related symptoms may be helpful in
cancer-related distress, particularly hyper-arousal and dysphoric
mood.7779 Data in support of medication benefits in cluster B
personality disorder are quite limited, although antidepressants
do have some supporting evidence for patients with comorbid
depression. 80 Meditation, including imagery, relaxation, and
mindfulness strategies, are helpful for many patients, alone or in
conjunction with structured psychotherapy.69,81
Psychotherapy should be problem-focused and should activate
psychosocial strengths. Social complications, including family
Table45.2 Biopsychosocial Dimensions of ClinicalCare
Destabilizing biological influences Infection (CNS or systemic)
Malnutrition (global or nutrient
deficiency)
Medication
Physical deconditioning
Sleep disruption
Tumor effect (direct or paraneoplastic)
Psychological vulnerabilities Anxiety
Cognitive distortions
Depression
Emotional lability
Hopelessness
Impulsivity, irritability, aggression
Social complexity Distortions of social perception
Isolation (chronic or recent onset)
Family challenge, criticism, chaos
Staff conflicts
Spiritual crisis Existential guilt or despair
Loss of faith
Persecutory or grandiose preoccupations
364 Section VII psychiatric disorders
conflict and financial and legal concerns, must be addressed as
precipitants of distress and disruptive behavior. Individual, fam-
ily, and group therapies may powerfully assist with relating to
caregivers, strengthening outside sources of nurturance, and
self-esteem9,28,8183 (see Section X of this volume, Evidence-Based
Interventions).
Beyond the problem focus that consultation initially
demands, we must anticipate pitfalls, bolster mature defenses,
and encourage productive coping. Diagnostic assessment that
clarifies the patients personality features, even without a for-
mal DSM label, will facilitate predicting the patients reactions
to each stage of treatment. An appreciation of the patients
strengths and limitations will help build rapport and support
remoralization. 84,85
The same may be said of clinicians working with these patients,
who need clarity and encouragement for such challenging work.
We can greatly enhance patients resilience by supporting the staff
and families that care forthem.
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cal psychotherapy. J Am Acad Psychoanal Dyn Psychiatry. 2005
Winter;33(4):619636.
85. Slavney PR. Diagnosing demoralization in consultation psychiatry.
Psychosomatics. 1999 JulAug;40(4):325329.
 SECTION VIII

Screening and
Assessment in
Psychosocial Oncology

46 Screening and Assessment for 49 Screening and Assessment for

Unmet Needs 369 Delirium and Dementia 396
Amy Waller, Allison Boyes, MarikoCarey, Reena Jaiswal, Yesne Alici, and William S.Breitbart
and Rob Sanson-Fisher
50 Screening and Assessment for
47 Assessment and Screening for Anxiety Cognitive Problems 405
and Depression 378 James C.Root, Elizabeth Ryan, and Tim A.Ahles
Paul B.Jacobsen and Kristine A.Donovan
51 Cross-Cultural Considerations
48 Screening and Assessment in Screening and Assessment 411
for Distress 384 Luigi Grassi, Maria Giulia Nanni, Kristine
Alex J.Mitchell A.Donovan, and Paul B.Jacobsen
 CHAPTER46
Screening and Assessment
for Unmet Needs
Amy Waller, Allison Boyes, Mariko
Carey, and Rob Sanson-Fisher
OVERVIEW OF UNMET NEEDS
Rationale for Identifying Unmet Needs
A host of psychosocial constructs have been used to measure
the well-being of individuals affected by cancer, with the assess-
ment of quality of life, satisfaction with care, and psychological
distress being among the most common approaches.1,2 More
recently, attention has turned toward the assessment of unmet
needs. Unmet needs arise when there is a mismatch between the
actual services or care that an individual receives and those that
they perceive necessary in order to achieve optimal well-being. 3
In the context of the Supportive Care Framework,4 unmet needs
encompass the range of physical, emotional, social, psychological,
informational, spiritual, and practical issues that individuals with
cancer may encounter.
The assessment of unmet needs is a conceptually different
approach to either quality of life or psychological distress.1
It allows individuals to self-report the issues for which they
perceive they require help, and the magnitude of their need
for help. 3 Thus, in contrast to other approaches to assessing
well-being, assessment of unmet needs does not assume that the
presence of a deficit in functioning, side effect, or an issue of
concern means that the patient must want help with it. Rather,
assessment of unmet needs confers the status of expert to the
individual, and enables care to focus on the issues that individu-
als themselves have identified as the ones they most need help
with. This approach is consistent with a patient-centered or
consumer-driven approach to healthcare, which recognizes
that patients have the right to be actively involved in the deci-
sions affecting their care. 5
Given the emphasis on the consumer perspective within the
unmet needs approach, relying solely on healthcare providers to
accurately recognize their patients unmet needs is problematic, as
providers often overestimate the severity or even the presence of
need.6 Some patients may also be reluctant to initiate discussions
about unmet needs if they are not equipped with the knowledge or
skills to actively engage with health professionals, or feel that these
problems are inevitable. Instead, a more rigorous and systematic
approach to assessment is required to ensure that unmet needs are
identified and addressed in a timely and appropriate manner. The
most accurate method for obtaining information about unmet
needs is via patient self-report.
Needs assessment can be used to measure the outcomes of care,
to monitor the care being provided, and to assess patients cur-
rent needs. The information obtained from needs assessments
can also be used for other purposes, such as quality improvement
activities.
Prevalence and Correlates of Unmet Needs
Over the past decade, there has been a marked increase in the
application of screening and assessment of unmet needs to
individuals affected by cancer. This can largely be traced to
the publication of the Supportive Care Needs Survey in 2000.7
Aplethora of cancer-specific needs assessment tools have subse-
quently been developed for use with individuals diagnosed with
different cancer types, stages of disease, at different stages of
the cancer trajectory, life stages, and relationship to patient (see
reviews by Richardson etal., 8 Carlson etal.,9 Clinton McHarg
et al.,10 Deeken et al.,11 for more details). A large body of lit-
erature documenting the prevalence of unmet needs among
individuals affected by cancer, and the factors associated with
reporting unmet needs, has subsequently emerged (see reviews
by Harrison et al.,12 Put et al.,13 Lambert et al.,14 for more
details).
Recent studies involving more than 500 participants and using
validated measures have found that between two-thirds and
three-quarters of individuals affected by cancer report unmet
needs, and that these are typically in the psychological, infor-
mation, activities of daily living, and physical domains. Unmet
needs are consistently associated with being female, being socially
disadvantaged, being younger, having poor social support, and
not being in remission.1518 The preponderance of unmet needs
among individuals affected by cancer and the association of
unmet needs with poor quality of life19 give an indication of the
potential benefits to be gained by the early identification of unmet
needs and targeted intervention.
370 Section VIII screening and assessment in psychosocial oncology

SUMMARY OF THE PSYCHOMETRIC of evidence). In addition to the multidimensional tools presented

QUALITIES OF EXISTING NEEDS
ASSESSMENT TOOLS
Ideally, a tool assessing unmet needs of individuals affected by
cancer will be multidimensional; will be acceptable to respondents
in terms of relevance of content, length of time to complete, and
ease of understanding; will be reliable with minimum random
error; and will be sensitive in discriminating between individuals
and groups of different health states and in detecting changes over
time.20,21 Asearch of all needs assessment tools for adult cancer
patients was conducted in MEDLINE and Embase from inception
to October 2013. Prior reviews were also searched.810,19 This sec-
tion provides a summary of studies assessing the psychometric
quality of the 35 existing tools of unmet needs in cancer patient/
survivor and caregiver populations (see Table 46.1 for summary
here, there are unidimensional needs assessment tools that are
available to assess particular domains of need (e.g., informational
needs or spiritual needs). There are also tools developed to assess
the unmet needs of cancer patients with specific tumor types.
Reliability
Internal Consistency
Internal consistency evaluates how individual items of the tools
correlate with each other. The majority of needs assessment tools
assessed the internal consistency of the scale (28/34 tools). Of
these, 20 reported Cronbachs alphas exceeding 0.7021,22 for the
total scale and each domain. The remainder (8/34) reported a
Cronbachs alpha of < 0.70 for at least one domain (i.e., partially
confirmed in Table 46.1). The authors of the SNST, the PNPC-C,
and the SPARC report that reliability data is forthcoming.

Table46.1 Summary of Psychometric Properties of Generic Needs Assessment Tools

Measure Content Construct Validity Internal Test-Retest Inter-Rater Responsiveness Acceptability

Validity Consistency Reliability Reliability

Known Factor Convergent/ Criterion

Groups Analysis Divergent

Patients
CaNDI (Lowery et al., Sample PC No ceiling
2011) too small effects
Cancer Needs Distress
Inventory
CARES (Ganz et al., Time: 20 mins
1992; Schag et al., 1990)
Cancer Rehabilitation
Evaluation System
CARES -SF (Schag PC Time: 11 mins
et al., 1991) Missing <11%
Cancer Rehabilitation
Evaluation System
Short Form
CaTS (Schofield et al.,
2012)
Cancer Treatment
Survey
CNAT (Shim et al., PC
2011)
Comprehensive Needs
Assessment Tool in
cancer
CNQ (Foot et al., 1995) PC
Cancer Needs
Questionnaire
CNQ-SF (Cossich et al., PC Time: 20 mins
2004) 4th5th grade
Cancer Needs
Questionnaire
Short-Form
(continued)
Table46.1(Continued)

Measure Content Construct Validity Internal Test-Retest Inter-Rater Responsiveness Acceptability

Validity Consistency Reliability Reliability

Known Factor Convergent/ Criterion

Groups Analysis Divergent

NEQ (Tamburini et al., PC Time: 11 mins

2000) Missing <3%
Needs Evaluation
Questionnaire
PNAT (Coyle et al., Time: 20 mins
1996)
Patient Needs
Assessment Tool
PNI (McIllmurray et al., PC Time: 20 mins
2001) Reading: 5th
Psychosocial Needs grade
Inventory
SCNS (Bonevski et al., Time: 10 mins
2000) Reading: 5th
Supportive Care Needs grade
Survey
SCNS-SF34 (Boyes et Time: 10 mins
al., 2009) Reading: 7.2
Supportive Care Needs
Survey Short Form
SCNS-ST9 (Girgis et
al., 2012)
Supportive Care Needs
Survey Screening Tool
3LNQ (Johnsen et al.,
2011)
Three-Levels-of-Needs
Questionnaire
1) Advanced Cancer Populations
NA-ACP (Rainbird et PC Time: 76 mins
al., 2005) Reading: 76.9
Needs Assessment
of Advanced Cancer
Patients
NAT: PD-C (Waller et PC
al., 2008 and 2010)
Needs Assessment
Tool: Progressive
Disease-Cancer
NEST (Emanuel et al., PC
2001)
Needs near the end-of-
life scale
PNPC (Osse et al., PC
2004)
Problems and Needs in
Palliative Care
PNPC-sv (Osse et al., Sample PC Time:
2007) too small 510 mins
Problems Needs in
Palliative Care Short
Version (PNPC-sv)

(continued)
Table46.1(Continued)

Measure Content Construct Validity Internal Test-Retest Inter-Rater Responsiveness Acceptability

Validity Consistency Reliability Reliability

Known Factor Convergent/ Criterion

Groups Analysis Divergent

POS (Hearn et al., PC Time: <10

1999) mins
Palliative Outcome
Scale
SPARC-45 (Ahmed et ? ? ? ? ? ? ? ?
al., 2009)
Sheffield Profile for
Assessment and
Referral to Care
SPEED (Richards et al.,
2011)
Screen for Palliative and
End-of-Life Care Needs
in the ED
Survivors
CaSun (Hodgkinson et PC Poor
al., 2007)
Cancer Survivors
Unmet Needs measure
SUNS (Campbell et al., Reading: 4th
2010) grade
Survivors Unmet
Needs Survey
SUNS-SF (Campbell et Floor effects for Missing <5%
al., 2014) 4 domains
Survivors Unmet Needs
Survey Short Form
Adolescent and Young People
CNQ-YP PC Floor and ceiling Missing <5%
(Clinton-McHarg et al., (1/6)
2012)
Cancer Needs
QuestionnaireYoung
People
Family/Caregivers/Support Persons
CNAT-C (Shin et al., Missing
2011) <1.8%
Comprehensive needs
assessment tool for
cancer caregivers
HCNS (Hileman et al., Time: 30 mins
1992) Reading: 5th
Home Caregiver Needs grade
Survey
FIN (Kristjanson et al.,
1992)
Family Needs Inventory
PNPC-C (Osse et al., ? ? ? ? ? ? ? ?
2006)
Problems and Needs in
Palliative Care caregiver
form

(continued)
 Chapter46 screening for unmet needs 373

Table46.1(Continued)

Measure Content Construct Validity Internal Test-Retest Inter-Rater Responsiveness Acceptability

Validity Consistency Reliability Reliability

Known Factor Convergent/ Criterion

Groups Analysis Divergent

NAFC-C (Kim et al., PC Time: <10

2011) mins
Needs Assessment of
Family Caregivers-Cancer
SCNS-P&C (Girgis et PC
al., 2011)
Supportive Care Needs
Survey-Partners and
Caregivers
SPUNS (Campbell et Floor effects Reading:
al., 2013) present 4th6th grade
Support Persons
Unmet Needs
SPUNS-SF (Campbell Floor effects Missing <5%
et al., 2013) present
Support Persons Unmet
Needsshort form

=confirmed; PC=partially confirmed;?=Unpublished/in preparation;

(See reviews by Richardson et al., 8 Carlson et al.,9 Clinton McHarg et al.,10 Deeken et al.11 for detailed references)

Test-Retest Reliability is the degree to which the content of a scale is representative of

Test-retest reliability examines whether similar results on a scale
can be obtained over two distinct periods of time in unchanged
conditions.21 A variety of approaches can be used to estimate
test-retest reliability, including the kappa statistic (k > 0.60),21
Pearsons correlation (r > 0.70),21,22 and intra-class coefficient (ICC
> 0.70).21,22 The most rigorous test-retest of a scale should examine
individual item test-retest reliability, in addition to domain and
total scale reliability. Only 11/34 tools reviewed assessed test-retest
reliability using these criteria. Of these, 5 met the criteria for
the total scale and each domain (CaNDI, CARES, CARES-SF,
SUNS, SPUNS). The other 6 did not meet criteria for at least one
domain (NA-ACP, NEQ, POS, CaSUN, CNQ, CNQ-YP). Very few
reported item-level test-retest correlations, even though individual
item scores may differ between administrations while the overall
domain score remains the same. Psychometric testing guidelines
have recommended that the re-administration of the tool should
occur within 2 to 14days in an effort to ensure that changes are less
likely a consequence of changes in needs themselves.23
Inter-Rater Reliability
Inter-rater reliability assesses whether similar results are reached
when different observers are used to rate the same patient.
Inter-rater reliability was assessed for three health professional
administered tools, including the PNAT, POS, and the NAT:PD-C.
Validity
Face and Content Validity
Face validity is the subjective estimate of the degree to which a
tool measures the concept it purports to measure. Content validity
the issue being measured.20 Common approaches that are used
to establish face and content validity for unmet needs tools
include reviewing previous literature on unmet needs; adapting
items derived from existing screening or assessment tools; and
using focus groups and interviews with healthcare providers,
patients, and caregivers to derive or refine selected items. Fewer
studies performed factor analysis to examine content validity, or
pilot-tested items with patients or caregivers. Tools that were the
most comprehensive in their approach to face and content valid-
ity employed multiple strategies to select and refine items (SCNS,
SCNS-P&C, NA-ACP, PNPC, SUNS, SPUNS, CaSUN, CNQ-YP,
NAT:PD-C, SPARC, CNAT, and CNAT-C).
Construct Validity
Construct validity is assessed by comparing the measure in devel-
opment with a measure of another concept to which it is theoreti-
cally related.21 For approximately half of the needs assessment tools
identified, convergent and divergent validity were examined against
other existing tools (18/34 tools).21 Factor analysis was also com-
monly performed to examine construct validity (23/34 tools).21
Fewer studies examined the ability of tools to discriminate between
a group of individuals known to differ, or known-groups validity,
by comparing groups across demographic and disease factors.22
Overall, adequate construct validity was demonstrated for existing
tools. Further validation beyond the original validation was under-
taken for a handful of tools, including the CARES, NA-ACP, SCNS,
SUNS, SPUNS, and the POS. While validation data were not avail-
able for all tools and all subscales reviewed (3LNQ, SNST, PNPC-C,
and the SPARC), the authors report that these data are forthcoming.
374 Section VIII screening and assessment in psychosocial oncology
Criterion Validity
Predictive validity is the extent to which test scores are associated
with behavior in another domain area of future behavior.20,21 For
example, the reporting of high unmet needs may predict health-
care utilization, or psychological disturbance in the present or
future. Despite the importance of this validity dimension, little is
being done in this field for unmet needs.
The CaNDI provided evidence of predictive validity, compared
with the Hospital Anxiety and Depression Scale (HADS). The
SCNS-ST9 was developed as a brief screening tool that could be
used to measure each of the SCNS-SF34 domains with high sensi-
tivity and specificity. The lack of studies evaluating this criterion
may reflect the difficulties associated in identifying an appropri-
ate gold standard to compare perceptions of unmet needs,10 or
the difficulties related to conducting longitudinal studies, espe-
cially in palliative populations. Future studies could contribute to
the evidence base by following individuals reporting high unmet
needs over time to determine whether they also report greater uti-
lization of health services.
Responsiveness
There was limited evidence for responsiveness, raising questions
about the sensitivity of these instruments. The most common
method for assessing responsiveness was by examining floor and
ceiling effects. Undetermined responsiveness of a measure poses
difficulties when no change in scores is observed and could be due
to either lack of sensitivity in the measure or lack of an interven-
tion effect.
Acceptability
A psychometrically sound measure may not always be very practi-
cal for clinical use. Acceptability was evaluated by assessing the
length of time taken to complete the tool, reading ease, and num-
ber of missing items. Completion time ranged between 5 min-
utes (e.g., NEQ) and 76 minutes for longer tools (e.g., NA-ACP).
Reading ease was examined in 8/34 tools, and was found to be
acceptable. The proportion of missing items (<5%) was reported
for five tools. Respondent feedback was also obtained about ease
of use, clarity, and comprehensiveness of the items for some tools.
Overall Psychometric Performance of Tools
As shown in Table 46.1, no tools met all psychometric criteria. For
each population of interest, however, some tools appeared to have
greater evidence of psychometric robustness. The long- and short-
form SCNS and CARES performed best for adult populations, the
NA-ACP and POS for advanced cancer populations, the SUNS for
cancer survivors, and the SPUNS for caregivers. The CNQ-YP was
the only tool identified for assessing the unmet needs of adoles-
cents and young people.
APPLICATION OF UNMET NEEDS TOOLS
FOR SCREENING AND ASSESSMENT
Potential for Screening and Assessment
Needs assessment can be performed using a two-stage assessment
process. The first stage of the screening process is a quick and prag-
matic method of identifying those who are currently experienc-
ing, or are likely to develop, unmet needs.8 Brief screening tools
provide a snapshot of an individuals unmet needs and may be
most appropriate where providers are constrained by limited time
or resources, or if the patient has limited functioning.9 The sec-
ond stage of the assessment process involves administering a more
comprehensive needs assessment measure, which can help clarify
the severity and complexity of identified unmet needs, and assist
in formulating care plans to address needs. Regardless of whether a
one- or two-stage process is implemented, individuals who identify
unmet needs should be followed up by a health professional (e.g.,
nurse, social worker) to clarify the nature of the unmet needs indi-
cated, prioritize the unmet needs, and plan and initiate interven-
tions to assist with the unmet needs. This may involve the provision
of information and referrals, with the individuals consent. The
experience of one cancer treatment center in Australia highlights
the importance of follow-up discussion with a healthcare profes-
sional. In this case study, 24 new cancer patients completed one
screening measure assessing unmet needs, followed by an inter-
view with a nurse. Of 236 patients screened, 105 (44%) reported
fatigue as an unmet need; however, after discussion with the nurse,
only 20% agreed to a referral to occupational or physical therapy,
and 3% agreed to ongoing monitoring or education by nurses.24
This is similar to findings reported by McLachlan etal., who found
that, following screening and assessment for unmet needs, only
37% of services offered to patients were accepted.25 At present, few
cancer treatment centers or community-based cancer organiza-
tions have introduced routine screening and/or assessment of the
unmet needs of people affected by cancer using validated tools.
Mode of Administration
Most needs assessment tools were developed as self-administered
pen-and-paper questionnaires and their psychometric properties
were tested in this format. With todays mainstream use of digi-
tal technology, the application of this technology to needs assess-
ment tools has also been examined with promising results. Needs
assessments have been successfully adapted for administration
via electronic devices in the clinical and community setting, with
several studies showing that computer-based modes of admin-
istration are acceptable to cancer patients, including those with
little or no computer experience.6 Importantly, patients responses
to a computer-administered version of the SCNS-SF34 were found
to be equivalent to pen-and-paper versions of the measure, but
only when each item was presented in exactly the same format
as the pen-and-paper version.26 Studies have also shown that it is
feasible and acceptable for cancer patients and caregivers to com-
plete needs assessment tools on a repeat basis, including by com-
puter,25,26 telephone, 27 and pen-and-paper.17,18
For some patients, such as those with limited physical or cog-
nitive functioning, it may be too burdensome to complete a self-
administered unmet needs measure. In these instances, the views
of a proxy could be seen as an alternative source of information.
However, it should be noted that studies have shown that patient
responses to needs assessment tools differ from those provided
by proxies. Discordance has been reported between provider
and caregiver estimates of physical and psychosocial issues and
patient self-reported concerns.28,29 In the unmet needs literature,
healthcare providers and caregivers significantly overestimate
the level of patients unmet needs across all domains. These find-
ings emphasize the importance of needs assessment tools being
completed by the individual, rather than a proxy, where possible.
Table46.2 Summary of Intervention Trials Designed to Change Unmet Needs Among Adults With Cancer
2) Reference 3) Aim and Study Design
Schofield etal., 2013 To test the effectiveness of
a tailored, multidisciplinary
supportive care program based on
systematic needs assessment in
reducing unmet needs and distress
and improving quality of life.
RCT
Jones etal., 2013 To test the clinical and cost
effectiveness of a rehabilitation
intervention for patients with
advanced recurrent cancer.
RCT with waitlist control
Young etal., 2013 To determine the effectiveness
of a nurse-delivered telephone
supportive intervention.
RCT
4) Setting and Sample
108 patients with a diagnosis of
inoperable lung or pleural cancer,
recruited from a specialist facility.
Country:Australia
41 patients with active, progressive,
recurrent, malignant breast or
hematological disease, completed
treatment, aged 18years or
over, recruited from outpatient
oncology clinics.
Country:UK
775 patients surgically treated for
colorectal cancer recruited during
hospital admission.
Country:Australia
5) Description of Intervention
Intervention patients received
two consultations at treatment
start and end. Sessions included
systematic needs assessment used
to tailor the intervention, active
listening, self-care education, and
communication of unmet needs to
multidisciplinary team (MDT).
Usual care received standard care.
Hence, there was no systematic
assessment or communication of
patients needs to the MDT.
The intervention delivered by a
hospice-based MDT, included
systematic clinical assessment, goal
setting with review dates, referrals
based on needs, weekly MDT
to review patients and patient/
clinician discussions in clinics.
For usual care patients, ongoing
review occurred by oncologists
with access to community services.
Patients joined a three-month
wait-list for referral to the
intervention.
Intervention patients received 5
telephone calls following discharge
from surgery (day 3 and 10, 1,
3, and 6months). Patients were
screened with standardized tool
to assess physical, information,
supportive care, and rehabilitation
needs. Tailored information was
provided in response to identified
needs, and emotional support was
provided as needed.
Patients allocated to usual care
were recommended to a follow-up
appointment with a general
practitioner or surgeon.
6) Needs Measure
Needs Assessment for Advanced
Lung Cancer Patients (NA-ALCP)
Primary analysis:Domain scores
for unmet need were compared
between groups at 8- and 12-week
follow-up.
Secondary analysis:Within-group
changes in outcomes from baseline
to 8- and 12-week follow-up were
estimated. Mean differences
between groups in change scores
were calculated.
Supportive Care Needs Survey
(SCNS) (Psychological subscale as
primary outcome; other subscales
as secondary outcomes)
Compared unmet needs subscale
scores between groups at 3-month
follow-up.
Supportive Care Needs Survey
(SCNS) Short Form
Compared scores at 3- and
6-month follow-up
7) Results
No significant differences between
the groups in reported unmet
needs at either the 8- or 12-week
follow-up.
Change score analysis indicated
a relative benefit from the
intervention for unmet symptom
needs at 8 and 12 weeks
post-assessment.
Intervention patients
demonstrated significantly lower
psychological needs compared
with usual care patients.
Intervention patients also reported
lower physical and patient care
needs compared to the usual care
group.
No significant differences between
the groups on median unmet
needs scores at either time point.
376 Section VIII screening and assessment in psychosocial oncology
Including both patient and proxy input may provide the most
detailed information to inform care.
Scoring and Interpretation of Unmet Needs Tools
There is wide variation in the classification of unmet needs. Some
studies and programs are concerned only with unmet needs
endorsed at a moderate to high level, while others are inter-
ested in all unmet needs identified, regardless of the magnitude of
the unmet need. Some studies and programs summarize unmet
needs at the domain level, while others assess the number of needs
endorsed overall. Consistent methods of calculating and reporting
unmet needs would facilitate comparisons among, and pooling of,
study and program results. There has been some attempt to address
this predicament through the development of recommended scor-
ing procedures, including the calculation of standardized domain
scores, for the commonly used SCNS. At present, however, there are
no agreed-upon criteria for any unmet needs tools for determining
what constitutes a clinically significant or at risk level of unmet
needs warranting further assessment or intervention. Furthermore,
there are no criteria for what represents a clinically important change
in unmet needs. The development of these criteria would greatly
assist in the interpretation and clinical utility of unmet needs tools.
CAN UNMET NEEDS BE ADDRESSED?
Rationale for Conducting Intervention Trials
of Unmet Needs
One of the key drivers behind the development of unmet needs
assessment tools is the hope that by identifying needs they can sub-
sequently be addressed, leading to an improvement of outcomes for
people affected by cancer. Ideally, tools for the assessment of unmet
needs should be used to link patients to appropriate evidence-based
treatments. Given that there is a wealth of studies documenting the
prevalence of unmet need, there is a need to determine what sort of
interventions may be effective in reducing these.
Key Findings from Unmet Intervention Studies
In 2012, Carey and colleagues conducted a systematic review of
intervention trials designed to change unmet needs among adults
with cancer. 30 The review identified only nine intervention stud-
ies, indicating that compared with measure development and
descriptive research, relatively little effort has been directed to
testing the effectiveness of interventions to reduce unmet needs.
Seven studies were randomized controlled trials (RCTs), and
two were quasi RCTs (with assignment to intervention or con-
trol groups via a non-random method). Methodological criteria
for concealment of allocation and dealing with missing data were
adequately met in four out of the seven RCTs. Almost all reported
that baseline measures were similar across groups, and only one
reported that participants were blind to allocation.30
All nine studies identified tested an intervention that included
an assessment of unmet need with feedback provided to the patient
and/or a health professional. Some of the studies also included tai-
lored strategies designed to address unmet needs identified during
assessment. Of the nine trials, six reported no intervention effect.
Of the three studies that reported a positive impact on unmet
needs, it is notable that the way in which an effect on unmet needs
was defined differed among trials. For example, one of the studies
reported the effect in terms of number of unmet needs, while the
remaining two reported an improvement in a subscale score on
the SCNS and CARES, respectively.
An updated literature search conducted in November 2013 using
the same methods as those of Carey and colleagues30 revealed three
additional studies. The characteristics of these studies are presented
in Table 46.2. Findings across these trials were mixed, with one trial
(Young etal.)31 reporting no intervention effect, and another small
trial (Jones etal.)32 with advanced cancer patients (n=41) report-
ing a positive impact of the intervention on three subscales of the
SCNS. The third trial (Schofield etal.)33 reported no intervention
effect on mean scores among groups at follow-up; however, there
was a significant benefit in favor of the intervention when change
scores from baseline to follow-up were compared among groups.
These mixed findings suggest that there is no strong evidence to
indicate the effectiveness of any particular approach to addressing
unmet supportive care needs among adult cancer patients.
Challenges and Future Directions
There is wide variation in the prevalence of unmet supportive care
needs reported in the literature, due in part to a lack of a standard-
ized approach to measurement, scoring, analysis, and reporting.
When the limited evidence for effective interventions for unmet
needs is considered in conjunction with the psychometric short-
comings of many measures of unmet need, it appears that the first
task in moving the evidence base forward is to ensure that the tools
selected for use in such trials are psychometrically sound. This may
mean additional work, refining existing tools and establishing key
psychometric qualities, or potentially developing new tools. As part
of this, a key challenge is to determine the most appropriate meth-
ods for scoring unmet needs surveys and determining what consti-
tutes a clinically significant change in unmet needs.
Determining what level of unmet need is clinically important has
relevance not only for assessing the outcomes of unmet needs trials,
but also potentially for establishing inclusion criteria for such trials.
In the field of psychological distress, relatively few trials pre-select
patients who demonstrate clinically significant levels of distress at
baseline for inclusion in the trial.34 The inclusion of non-distressed
patients has been identified as a potential reason for mixed findings
and modest effect sizes across trials.35,36 This logic may also apply to
unmet needs interventions, but has yet to be investigated.
Finally, interventions aimed at reducing unmet needs warrant
careful examination. Unmet needs cover a broad range of con-
cerns; thus intervention approaches need to draw on a broad range
of expertise, and should link to a variety of services and strategies
targeted toward specific concerns. Hence interventions to address
unmet needs may comprise many strategies, delivered in different
combinations, according to an individuals unmet needs profile.
This poses challenges for evaluation, as there is likely to be varia-
tion in effectiveness across strategies, as well as variation in the
way in which they are delivered. While these issues may not be
insurmountable, they warrant careful consideration in planning
future unmet needs trials.
CONCLUSIONS
Unmet needs assessments are driven by a patient-centered
approach to care and, as such, have promise for improving
outcomes that are important to patients. Despite a large vol-
ume of research on unmet needs, several critical issues need to

be addressed if we are to progress in this field of work. First,
there is a need to further improve the tools of measurement of
unmet needs to ensure that they meet psychometric criteria for
validity and reliability. Second, guidance is needed about how
best to use unmet needs tools in practice (for example, as part
of a two-stage assessment process). Third, there is a need for a
greater proportion of effort to be directed toward development
and testing of strategies to reduce unmet needs. Given that inter-
vention trials have reported mixed findings, there is a need to
consider key learnings from past research when designing future
interventions.
ACKNOWLEDGMENTS
This chapter was supported by a Strategic Research Partnership
Grant from Cancer Council NSW to the Newcastle Cancer Control
Collaborative and infrastructure funding from the Hunter
Medical Research Institute. Dr Mariko Carey is supported by a
NHMRC Translating Research Into Practice (TRIP) Fellowship.
Dr Allison Boyes is supported by a NHMRC Early Career
Fellowship & Cancer Institute NSW Early CareerFellowship. The
authors have no financial disclosures.
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 CHAPTER47
Assessment and Screening
for Anxiety and Depression
Paul B.Jacobsen and Kristine A.Donovan
INTRODUCTION
The development of psychosocial oncology has been spurred by
research using assessment instruments capable of document-
ing the negative impact of cancer and its treatment on patients
emotional well-being. The need to address these problems has
led to many of the same instruments being used as outcome
measures in studies evaluating the benefits of interventions
designed to maintain or improve patients emotional well-being.
In both instances, the field has been advanced by having instru-
ments available that possess good psychometric properties and
that are suitable for use with people with cancer. In this chapter,
we identify assessment instruments commonly used to assess
anxiety and depression in psychosocial oncology research, and
summarize the evidence regarding the relative merits of these
instruments.
Over the past decade, there has been growing interest in extend-
ing the use of assessment instruments into everyday clinical
practice. This interest has been driven, in part, by clinical prac-
tice guidelines and consensus statements which recommend that
patients emotional well-being be routinely assessed in order to
identify patients in need of psychosocial care.1,2 These recommen-
dations have stimulated considerable research examining how
well brief assessment instruments function as screening tools for
detecting clinically significant problems in emotional well-being.
Given these developments, in this chapter we also identify brief
assessment instruments that can be used to screen for anxiety and
depression and summarize available evidence regarding how well
they function if used for this purpose.
PERFORMANCE OF INSTRUMENTS USED
TO ASSESS ANXIETY AND DEPRESSION
Overview
Judging the relative merits of instruments that can be used to
assess anxiety and depression in cancer patients is a complex task.
Among the issues to be considered are (1)the criteria by which to
select instruments to review, (2)the criteria by which to evaluate
the instruments, (3)the evidence to be used as part of the evalu-
ation process, and (4)the evaluation of the available evidence. To
address these issues, we were able to draw upon two published
systematic reviews of English-language instruments used to assess
anxiety, depression, and distress in cancer patients.3,4
In 2009, Vodermaier and colleagues published a systematic
review designed to identify and evaluate instruments used to
screen for emotional distress in cancer patients.4 Toward this
end, the authors conducted a systematic search for published
English-language studies using terms that were consistent with
the definition of distress as a state of negative affect that is sug-
gestive of affective disorders (i.e., minor or major depressive disor-
der and dysthymia), anxiety disorders, and adjustment disorders
(depressive, anxious, or mixed).4 Studies were included if they
attempted to validate an interviewer-administered or standard-
ized self-administered instrument in a sample of cancer patients.
The review was further restricted to studies evaluating measures
comprising 50 or fewer items. This process led to the identification
of 33 instruments. For purposes of this chapter, we have selected
among the identified instruments those that were also evaluated
in more than one study and are generally considered to be mea-
sures of anxiety and depression. They are listed in Table 47.1, along
with their acronyms used in the text that follows.
In 2010, Luckett and colleagues published a systematic review
designed to identify and evaluate instruments used to assess
anxiety, depression, and distress in randomized controlled tri-
als (RCTs) of psychosocial interventions for people with cancer.3
Toward this end, the authors conducted a systematic search over
the previous 10years for RCTs of psychosocial interventions con-
ducted with English-speaking samples of cancer patients, bor-
rowing terms used in previous systematic reviews of psychosocial
interventions for cancer patients. The authors included instru-
ments assessing mood, emotion, or stress, along with those explic-
itly described as distress measures. This process resulted in the
identification of 30 instruments. The instruments identified then
underwent another level of filtering that included elimination of
measures:those that were not suitable for people with any type or
stage of cancer; those in which one-third or more of the items were
considered to be confounded by cancer or its treatment; and those
for which there were no published data on reliability and validity
in an English-speaking cancer sample. As with the other review,
we have selected among the remaining instruments those that
were also evaluated in more than one RCT and are generally con-
sidered to be measures of anxiety and depression (see Table 47.1).
 Chapter47 screening for anxiety and depression 379

Table47.1 Identified Measures of Anxiety and Depression

Name Acronym Construct(s) Assessed No. Items (Total) No. Studies (Review)*
Beck Depression Inventory BDI Depression 21 4(V)
Beck Depression Inventory-Short Form BDI-SF Depression 13 2(V)
Brief Symptom Inventory BSI Anxiety, Depression 53 2(L)
Calgary Symptoms of Stress Inventory C-SOSI Anxiety, Depression 56 2(L)
Center for Epidemiologic Studies Depression Scale CES-D Depression 20 21(L), 4(V)
Edmonton Symptom Assessment Scale ESAS Anxiety, Depression 9 2(V)
Edinburgh Postnatal Depression Scale EPDS Depression 10 4(V)
General Health Questionnaire-28 GHQ-28 Anxiety, Depression 28 1(L), 2(V)
Hospital Anxiety and Depression Scale HADS Anxiety, Depression 14 20(L), 41(V)
Memorial Anxiety Scale for Prostate Cancer MAX-PC Anxiety, Depression 18 3(V)
Mood Evaluation Questionnaire MEQ Depression 23 2(V)
Patient Health Questionnaire-9 PHQ-9 Depression 9 2(L), 2(V)
Profile of Mood States POMS Anxiety, Depression 65 25(L)
Psychosocial Screen for Cancer PSSCAN Anxiety, Depression 21 2(V)
PTSD Checklist PCL-C Anxiety 17 3(V)
QuestionSingle:Depressed Q-S:D Depression 1 6(V)
QuestionSingle:Lost Interest Q-S:LI Depression 1 2(V)
QuestionCombined:Depressed and Lost Interest Q-C:D&LI Depression 2 3(V)
Symptom Checklist-90-Revised SCL-90-R Anxiety, Depression 90 5(L)
Zung Self-Rating Depression Scale ZSDS Depression 20 6(V)

*L=Luckett etal.3; V=Vodermaier etal.4

The resulting list includes measures that assess only depression
(e.g., BDI) or only anxiety (e.g., PCL-C), as well as instruments
measuring both constructs (e.g., HADS). It also includes instru-
ments with subscales assessing anxiety or depression as well as
other constructs (e.g., POMS). As we have previously noted,5 anxi-
ety and depression can each be assessed using a single symptom
approach, a multisymptom approach, and a clinical syndrome
approach. Examples of the single symptom approach appear-
ing in Table 47.1 include the single items on the ESAS, which ask
respondents to rate the severity of their depression and anxiety
in the past week on a 10-point scale. Examples of the multisymp-
tom approach appearing in Table 47.1 include the 20-item CES-D,
which asks respondents to rate how often in the past week they
have experienced common symptoms of depression (e.g., rest-
less sleep, poor appetite, and sadness). Examples of the clinical
syndrome approach appearing in Table 47.1 include the PHQ-9,
which consists of nine self-report items that mirror the Diagnostic
and Statistical Manual of Mental Disorders (4th edition; DSM-IV)
diagnostic criteria for major depressive disorder.6 Readers seek-
ing more information about these or other instruments listed
in Table47.1 should consult the source references, which can be
found in the reviews by Luckett etal.3 and Vodermaier etal.4
Reliability
In the review by Vodermaier et al.,4 evaluation of reliability
focused on the internal consistency reliability of the instrument,
with cut-points used to classify reliability as low, moderate,
or high. In the review by Luckett etal., 3 the quality of the evi-
dence for reliability (both internal consistency and test-retest) was
assessed using a checklist that was summarized with one of three
scores:0 (no evidence or poor reliability), 5 (inconsistent reliabil-
ity or from one or two studies only), or 10 (generally consistent
evidence for reliability from several studies).
Since the reviews used different criteria, it is not surprising that
the same instrument sometimes received different evaluations
(see Table 47.2). For example, the CES-D received the best possible
rating (high) in the Vodermaier etal. review,4 but a rating indi-
cating only limited or inconsistent evidence of reliability in the
Luckett etal. review. 3 More important, none of the instruments
rated by Luckett etal. 3 and summarized in Table 47.2 received the
highest possible rating, whereas most of the instruments rated
by Vodermaier etal.4 and summarized in Table 47.2 received the
highest possible rating. This pattern suggests that the criteria used
by Luckett etal.4 were much more stringent and might discount
evidence of acceptable reliability obtained in only a few studies.
Validity
Only one of the reviews evaluated validity as defined in the clas-
sic psychometric sense (see Table 47.2). Specifically, Luckett etal. 3
considered the quality of the evidence for each instruments
convergent, divergent, criterion, and predictive validity with
English-speaking cancer populations. Once again, evidence was
380 Section VIII screening and assessment in psychosocial oncology

Table47.2 Psychometric Properties of Identified Measures of Anxiety and Depression

Instrument Reliability Validity Availability of Ability to Identify Screening Performance Overall Rating
Acronym Comparison Data Treatment Effects
Vodermaier Luckett Luckett etal., Luckett Luckett etal., 2010 Vodermaier Luckett Vodermaier Luckett
etal., 2009 etal., 2010 2010 etal., 2010 etal., 2009 etal., 2010 etal., 2009 etal., 2010

BDI High High Excellent

BDI-SF Low Moderate Poor
BSI 0 5 10 5 0 50
C-SOSI 5 0 0 0 0 27.5
CES-D High 5 5 5 10 High 10 Excellent 55
ESAS Moderate Fair
EPDS High Moderate Good
GHQ-28 High 0 0 5 0 High 5 Excellent 37.5
HADS High 5 5 10 10 Moderate 5 Good 77.5
MAX-PC High Poor
MEQ High Moderate Poor
PHQ-9 High Poor
POMS 5 5 5 10 0 55
PSSCAN High High Good
PCL-C High Moderate Good
Q-S:D Moderate Good
Q-S:LI Moderate Moderate
Q-C:D&LI High Excellent
SCL-90-R 5 5 5 5 0 47.5
ZSDS Low Moderate Poor

summarized using a three-point scale: 0 (no evidence or poor
validity), 5 (inconsistent validity or from one or two studies only),
or 10 (generally consistent evidence for validity from several stud-
ies). None of the instruments summarized in Table 47.2 received
the highest possible rating. However, several instruments that are
used frequently in psychosocial oncology research (e.g., CES-D,
HADS, and POMS) earned the second highest rating.
Availability of Comparison Data
The availability of comparison data showing how individuals in
the general population and large groups of cancer patients score
on an assessment instrument can be very useful for both research
and clinical purposes. For example, information of this type can
be helpful for understanding the acuity of a patients need for psy-
chosocial care, as well as the benefits a patient may or may not have
derived from the psychosocial care that he or she was provided.
The usefulness of comparison data is further enhanced when it
is also available for population subgroups based on demographic
characteristics (e.g., age and gender) or disease or treatment char-
acteristics in the case of cancer patient comparison data.
Only one of the reviews evaluated the availability of compari-
son data (see Table 47.2). Specifically, Luckett et al. 3 considered
the quality of the comparison data using a three-point scale: 0 (no
or minimal comparison data available), 5 (substantial comparison
data available from large-scale studies), or 10 (comparison data
available for subgroups [e.g., age and gender in cancer and general
populations]). Two of the instruments summarized in Table 47.2
received the highest possible rating (i.e., the BSI and HADS). Four
others received the second highest rating (i.e., the CES-D, GHQ-
28, POMS, and SCL-90-R).
Ability to Identify Treatment Effects
As noted previously, a major research use of depression and anxi-
ety assessment instruments has been to evaluate the benefits of
interventions designed to maintain or improve cancer patients
emotional well-being. Accordingly, the ability to identify treat-
ment effects represents a very desirable feature in an assessment
instrument. One way to evaluate this feature is to examine the
extent to which the benefits of psychosocial interventions for can-
cer patients have been demonstrated in RCTs through use of the
instrument.
Only one of the reviews examined the ability of instruments
to identify treatment effects in RCTs of psychosocial interven-
tions with cancer patients (see Table 47.2). Specifically, Luckett

etal.3 evaluated the use of assessment instruments and the out-
comes obtained in RCTs of psychosocial interventions with can-
cer patients on a three-point scale:0 (no evidence from RCTs), 5
(effect size [ES] > 0.2 identified in 1 to 3 RCTs), or 10 (ES > 0.2
identified in > 4 RCTs). Three of the instruments summarized in
Table 47.2 received the highest possible rating (i.e., the CES-D,
HADS, and POMS). Two others received the second highest rat-
ing (i.e., the BSI and SCL-90-R).
PERFORMANCE OF INSTRUMENTS
USED TO SCREEN FOR ANXIETY
ANDDEPRESSION
Overview
As noted previously, there is considerable interest in extending
the use of assessment instruments into everyday clinical practice
in order to identify cancer patients experiencing clinically signifi-
cant anxiety or depression who should undergo further evalu-
ation and/or should be referred to experts in psychosocial care.
Toward this end, numerous studies have evaluated the perfor-
mance of assessment instruments when cut-off scores are applied
for purposes of classifying the severity of cancer patients anxi-
ety or depression. Evaluation of performance in this regard typi-
cally involves comparing the extent to which classifications made
using the instrument in question correspond with those obtained
using a gold standard classification instrument. For example,
the screening utility of an instrument assessing depression might
be evaluated by comparing classifications based on its cut-off
score with those obtained using an established structured clini-
cal interview designed to diagnose mood disorders based on DSM
criteria.6 These evaluations are often performed by calculating the
sensitivity and specificity of classifications based on the instru-
ment under study relative to those made independently using the
gold standard measure. In this example, sensitivity would refer
to the proportion of people with a mood disorder who scored at or
above the cut-off score on the instrument under evaluation, and
specificity would refer to the proportion of people without a mood
disorder who scored below the cut-off score on the instrument
under evaluation.
Results
Both reviews evaluated screening performance (see Table 47.2). In
the review by Vodermaier etal.,4 specific cut-points for averaged
sensitivity and specificity statistics were used to classify an instru-
ments validity for use in screening as low, moderate, or high. need for research that will address this gap in knowledge and indi-
The evidence reviewed included studies in which the instrument
was compared to classifications derived from (in increasing order
of strength): clinical diagnoses, validated questionnaires, and
structured clinical interviews. In the review by Luckett et al., 3
the quality of the evidence was evaluated in terms of the instru-
ments criterion validity relative to a diagnostic interview and
was assigned one of three scores:0 (no evidence or unsatisfactory
screening performance), 5 (inconsistent screening performance
or from one study only), or 10 (generally consistent evidence for
screening performance).
Five anxiety and depression measures reviewed by Vodermaier
et al.4 and listed in Table 47.2 scored high in screening per-
formance. They were the BDI, CES-D, GHQ-28, PSSCAN, and
Chapter47 screening for anxiety and depression 381
Q-C:D&LI. Only one measure reviewed by Luckett etal.3 earned
the highest possible rating (i.e., the CES-D). Two other measures
(i.e., the GHQ-28 and HADS) earned the second highest rating.
In addition to identifying the instruments that scored highest
among all those evaluated, it is worthwhile to consider the screen-
ing performance of brief assessment instruments. Adopting a
criterion of 10 items or less as indicative of brevity, five brief
instruments assessing anxiety or depression were evaluated:the
ESAS, EPDS, Q-S:D, Q-S:LI, Q-C:D&LI. The Q-C:D&LI was the
only instrument to obtain the highest possible rating. The instru-
ment consists of two questions that correspond with DSM-IV
criteria required for diagnosing major depressive disorder. 6
Specifically, the questions correspond with the requirement that
either depressed mood or loss of interest or pleasure in usual
activities must be present, along with four other symptoms for
major depressive disorder. Evidence for the utility of this approach
includes a study conducted with terminally ill cancer patients in
which these two questions were found to possess good sensitivity
and specificity (> 90%) relative to diagnoses of major and minor
depressive episodes based on a structured clinical interview.7 It
should be noted that a recent meta-analysis of screening tools for
depression in cancer also identified the Q-C:D&LI as having the
best screening properties of any instrument evaluated.8
The PHQ-9 is a nine-item measure developed for use in pri-
mary care settings9 that has demonstrated excellent properties
as a screener for major depressive disorder in a variety of clini-
cal populations.10 When the reviews by Vodermaier et al.4 and
Luckett et al.3 were conducted, the PHQ-9 had yet to be systemati-
cally evaluated as a screening tool with cancer patients. In 2011,
Thekkumpurath and colleagues published the results of a study
evaluating the PHQ-9 with this population.11 They found that it
possessed good sensitivity and specificity (>80%) relative to diag-
noses of major depressive disorder based on a structured inter-
view using a cut-off score derived from the study data. Assuming
independent replication of these findings, the PHQ-9 is likely to
be positively reviewed in future evaluations of depression screen-
ing instruments for use with cancer patients.
The Generalized Anxiety Disorder-7 (GAD-7) is a seven-item
measure also developed for use in primary care settings9 that
has demonstrated excellent properties as a screener for general-
ized anxiety disorder.10 Although it would appear to possess con-
siderable potential for similar use in oncology settings, a review
of the literature did not identify any published studies that have
evaluated its screening properties relative to a gold standard
classification instrument with cancer patients. Clearly, there is a
cate whether the GAD-7 should be recommended as an anxiety
screening instrument for use in oncology settings.
OVERALL PERFORMANCE EVALUATION
In both reviews, an overall performance rating was assigned to
each of the instruments evaluated (see Table 47.2). In the review
by Vodermaier etal.,4 the overall rating was derived using deci-
sion rules that took into account the relative merits of the instru-
ment in terms of its reliability, the criterion measure(s) to which
its performance as a screening measure was compared, and its
performance as a screening measure relative to the criterion
measure(s) used. Accordingly, the overall rating primarily reflects
382 Section VIII screening and assessment in psychosocial oncology
an instruments performance as a screener. Based on these crite-
ria, four anxiety and depression assessment instruments summa-
rized in Table 47.2 earned the highest rating of excellent (the
BDI, CES-D, GHQ-28, and Q-C:D&LI). In the review by Luckett
etal.,3 the overall rating was derived based on differential weight-
ing of the relative merits of an instrument with regard to its valid-
ity, reliability, ability to identify treatment effects, performance as
a screener relative to a diagnostic interview, available comparison
data, number of constructs assessed, length, and ease of adminis-
tration and cognitive burden. The resulting scores (ranging from
0 to 100) thus reflect a relatively broad-based evaluation of an
instruments merits. Among those anxiety and depression assess-
ment instruments summarized in Table 47.2, the five most highly
rated, in descending order, were the HADS, POMS and CES-D
(tied), BSI, and SCL-90-R.
SUMMARY AND CONCLUSIONS
This chapter has provided detailed information, drawn primarily
from two recently published reviews, about the relative merits of
several commonly used English-language instruments for assess-
ing depression and anxiety in cancer patients. Based on the evi-
dence presented, several conclusions can be drawn.
First, the CES-D and HADS are the instruments that most con-
sistently received positive ratings across the two reviews. Among
their notable features are the favorable ratings they earned for
reliability,3,4 validity, 3 availability of comparison data, 3 ability to
identify treatment effects, 3 screening performance,3,4 and overall
rating.3,4 That said, these two instruments are not without their
weaknesses, especially when used for screening purposes. For
example, one recent systematic review and meta-analysis of the
HADS concluded that, while the depression subscale possessed
good accuracy as a screening tool for depression, the performance
of the anxiety subscale was inferior.12 Another recent systematic
review and meta-analysis concluded that the HADS performed
reasonably well in identifying individuals without mental disor-
ders but should not be used alone to identify individuals with sus-
pected mood, anxiety, or mixed mental disorders.13
Second, it is clear that no single instrument can be recom-
mended for all possible applications. Clinicians and researchers
must make choices depending on the circumstances for which they
intend to use an instrument. In certain instances, the time avail-
able to complete an instrument will dictate the use of a very brief
instrument (e.g., ESAS). In other instances, such as an intervention
study, the demonstrated ability of an instrument to identify treat-
ment effects (e.g., CES-D) may be the paramount consideration.
In yet other instances, the demonstrated ability of an instrument
to screen accurately for mental disorders (e.g., PHQ-9) may drive
instrument selection. Accordingly, careful consideration of an
instruments capabilities in relation to the intended use(s) should
be the prime factor guiding instrument selection.
Third, existing systematic reviews of depression and anxiety
assessment and screening instruments are characterized by a num-
ber of features that limit their utility. These features include lack of
consistency across reviews in the methods used to select instru-
ments for evaluation, the features of each instrument evaluated, and
the criteria used to evaluate instruments on those features. Efforts
are underway to introduce greater standardization in the report-
ing of psychometric properties of assessment instruments that
should facilitate more consistent approaches in future systematic
reviews. One effort notable in this regard is the Consensus-based
Standards for the Selection of Health Measurement Instruments
(COSMIN) initiative, which has developed a standardized taxon-
omy of instrument properties, along with standardized definitions
and ratings.14,15 Another important limitation of many existing
systematic reviews is their exclusive focus on studies published
in English, based on instruments written in English. With the
growing international scope of psychosocial oncology, informa-
tion about instruments available in languages other than English
is increasingly needed. Beyond information about availability,
clinicians and researchers need critical appraisals of the methods
used to create versions in other languages. That is, information is
needed about the extent to which versions in other languages have
been created using recommended procedures for translation and
cultural adaptation of patient-reported outcome measures.16 Once
created in other languages, the new versions then also need to be
revalidated because it cannot be assumed that an instruments
properties in one language and cultural group carry over to its
properties in another language and cultural group.17
A final conclusion is that clinicians and researchers need to stay
abreast of ongoing work that is likely to influence future recom-
mendations for depression and anxiety assessment and screening
in cancer patients. Along these lines, additional research is likely
to clarify the utility of existing assessment instruments, such as the
State Trait Anxiety Inventory18 and the Beck Depression Inventory
II,19 which have received limited attention to date in the psycho-
social oncology literature. Future recommendations may also
be influenced by research evaluating the utility of several newly
developed assessment and screening instruments when adminis-
tered to cancer patients. An important development in this regard
is the Patient-Reported Outcomes Measurement Information
System (PROMIS) initiative.20 As part of this effort, item banks
were developed for a number of constructs, including anxiety and
depression.21 These item banks have been calibrated so that they
can be used to create scales of varying length, including scales
in which items are selected and presented to individuals based
on their responses to previous items. This approach, known as
computer-adaptive testing, is likely to grow in importance since
it has the potential to reduce the number of items that need to be
administered while simultaneously reducing measurement error.22
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10. Kroenke K, Spitzer RL, Williams JBW, Lowe B. The Patient Health
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GA. Manual for the State-Trait Anxiety Inventory. Palo Alto,
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2004;37:7084.
 CHAPTER48
Screening and Assessment
for Distress
Alex J.Mitchell
INTRODUCTION
Clinically significant distress can be defined as unpleasant emo-
tional upset that is severe enough to interfere with daily function.
In the context of cancer, distress is usually due to specific medi-
cal complications (particularly if these result in unmet needs), as
well as limitations in role and comorbid depression or anxiety.
In research settings, distress is often described using the psychi-
atric term adjustment disorder. At any one time, adjustment
disorder is present in about 30%50% of patients with a recent
cancer diagnosis.1 Unfortunately, many psychological and psy-
chiatric concerns are not addressed, with one-third to one-half
of patients reporting unmet psychosocial needs after their diag-
nosis.2 Untreated distress and unmet mental health needs reduce
quality of life and can impair receipt of medical treatment for
cancer. As a result, many organizations have made recommenda-
tions for improvements in minimally adequate quality supportive
care, including assessment and screening for distress. 3 There is
also an attempt to raise awareness of the importance of distress
using the concept of the sixth vital sign (see Chapter 101 of this
volume). Screening can be defined as the initial application of
test or tool to optimally rule out those without a condition with
minimal false negatives (missed cases). Screening may be followed
by second-step case finding to clarify those with the condition of
interest with minimal false positives. Thus step one is designed to
minimise false negatives, and step two is designed to minimize
false positives. The actual implementation of distress screening in
clinical oncology practice has been very variable and subject to
considerable debate about its effectiveness and acceptability.4,5 In
many centers, clinicians do not use a standardized or validated
tool, but rather use unstructured open-ended questioning as their
only form of clinical judgement.6,7 Yet clinical judgment of can-
cer clinicians is generally accepted as suboptimal for distress and
related mental health concerns, just as clinical judgment of pri-
mary care physicians is also suboptimal for these areas.8 The rea-
sons behind this variability in clinical judgment are complex, but
simply in terms of time management, in observed clinical inter-
views emotional issues are often not emphasized during medical
consultations in cancer settings.9,10
Low implementation of distress screening is only a concern if
screening for distress and related disorders is both effective and
acceptable in clinical practice. Ideally, those studying screen-
ing methods should be able to demonstrate added value over
diagnosis-as-usual (that is, a no-screening condition), whether
that is in terms of enhanced communication, enhanced recogni-
tion, or enhanced patient well-being. In short, there should be
a demonstrable improvement in patient-reported outcome mea-
sures (PROMs).11 It is important to consider that some groups
advise against screening, particularly screening poorly defined
populations in settings where adequate follow-up care is not
guaranteed. Indeed, before embarking on widespread screening
for distress, the following cautions should be considered. First,
the merits of screening should not be judged on those already
recognized and in receipt of appropriate treatment, but rather
what additional benefits may accrue.12 Second, the acceptabil-
ity of screening and the burden on staff should be considered.
Clinicians are rarely motivated to apply front-line screen mea-
sures where results are not immediately beneficial. Third, the
patients perspetive should not be overlooked; in particular, what
is the patients and familys reception to the suggested screening
program? Patients may not like the idea of automated processes
replacing a clinician, but may accept a supplementary process
guided by their clinical team. Fourth, consider how the bene-
fits of screening will be measured and how this can inform the
screening program. Finally, and applicable mainly to research
centers, some consider that the merits of screening per se should
be distinguished from the benefits of screening and linked treat-
ment combined. 3,8 Previous narrative reviews have come to dif-
ferent conclusions about the merits of distress screening. For
example, some have failed to find any relevant randomized con-
trolled trials (RCTs). 3,4 Others have reviewed data from RCTs
but have omitted data from non-randomized trials or observa-
tional screening studies.13,14 Non-randomized sequential cohort
studies can provide valuable data, particularly when resources
are equivalent in both phases of the study, and the power of the
study is reasonable.
CLINICAL ASSESSMENT OF DISTRESS
Before examining instruments and tools, it is important to
acknowledge that a purely clinical approach to distress is not
necessarily wrong or by definition inaccurate, but any clinical

approach to a distressed patient should be sensitive, confiden-
tial, and thorough, and should be conducted by a person with
appropriate background training and skills. Clinical approaches
to diagnosis tend to be more variable than those based on vali-
dated tools but at the same time more personal and more flexible.
Evidence indicates that a sensitive, confidential, and thorough
approach to patients fosters a trusting therapeutic relationship,
and this trust is in itself influential in determining clinical out-
comes.15 Barriers to clinical identification of distress include
insufficient time, low training/skills, low index of suspicion, poor
communication, low trust, and low awareness of mental health
complications.10 Anumber of authors have commented on sub-
optimal communication strategies by clinicians. For example,
many clinicians appear to miss most cues and concerns, and
they adopt behaviors that discourage disclosure. Difficult top-
ics are infrequently raised by clinicians and may be perceived
as a communication gap by patients. Asurprisingly small num-
ber of studies have looked at cancer clinicians ability to detect
distress. Trask etal. (2004) found that clinicians had 60% sensi-
tivity and 84% specificity in relation to distress on the Distress
Thermometer (DT; defined by a score of 4).16 In a replication
study, Mitchell and colleagues (2010) looked at the identification
of distress by chemotherapy cancer nurses using distress defined
by the DT ( 4)in 400 nurse-patient consultations.17 Nurse prac-
titioners had a detection sensitivity of 50% and specificity of 80%.
This low sensitivity implies a significant number of missed cases,
and although specificity appears reasonable, at a low prevalence
rate this can translate into a significant number of false positives.
A recommended approach is to ask all suitable patients broad
opening questions such as How are you feeling? or How are
you coping at the moment? If there is a response that causes con-
cern, clinicians should move on to ask about symptoms of clinical
disorder, such as depression and anxiety, as well as asking about
unmet needs. Research has shown that a single clinical question
Are you depressed? does not work well to detect depression due
to low specificity, but that two or three simple questions can be
effective.18 Interestingly, no study has examined a single question
worded for distress (but see below for a new analysis regarding
whether a depression question helps identify distress). One group
has evaluated a single anxiety question,19 and several groups
have evaluated the help question, that is, Do you need help
from a professional?20 With the advent of the fifth edition of the
Diagnostic and Statistical Manual of Mental Disorders (DSM-5),21
clinicians should not ignore operational criteria for mental disor-
der, although it is true that slight modification of standard symp-
toms and signs may be warranted in cancer settings regarding
clinical depression.22
OVERVIEW OF DISTRESS
SCREENINGTOOLS
Clinicians and researchers wishing to identify and measure dis-
tress have a choice among a number of tools.23,24 These have vari-
able evidence bases in oncology and palliative settings. It is now
generally accepted that brief (i.e., ultra-short) tools are most prac-
tical for clinical settings, and our group defined these as tools
taking less than five minutes to complete and usually consisting
of less than 14 items. Longer tools may still find a use, particu-
larly in waiting rooms, reception areas, and at home (e.g., via the
Chapter48 screening and assessment for distress 385
Internet). In 1998 the National Comprehensive Cancer Network
(NCCN) released a one-item, visual-analog scale (VAS) known as
the Distress Thermometer (DT), used with or without a problem
checklist of unmet needs. While a number of alternatives to the
DT exist, including the Psychological Distress Inventory (PDI),
Brief Symptom Inventory (BSI), General Health Questionnaire
(GHQ), and Symptom Checklist 90-R (SCL-90), their evidence
base is currently insufficient for reliable recommendations in
oncology. Two multi-domain tools, the Edmonton Symptom
Assessment System (ESAS) and the Emotion Thermometers
(ET), have undergone initial independent validation studies and
are of particular interest, but further data are needed. Studies
involving the DT suggest modest to good sensitivity and mod-
est specificity with high acceptability. 25 In the last few years this
evidence base has expanded, and a number of large-scale stud-
ies have re-examined the diagnostic accuracy of the DT in sam-
ples exceeding 500 patients. Anew meta-analysis from Ma etal.
(2014) provides valuable data on the overall accuracy of the DT
when screening for distress. 26 Using the Hospital Anxiety and
Depression Scale summary score (HADS-T)27 as the criterion ref-
erence, Ma etal. (2014) identified 27 qualifying studies involving
7023 participants (Table 48.1). Pooled results suggest that the sen-
sitivity of the DT is about 82% and its specificity 73% at a cut-off
of 4 or above. Sensitivity and specificity provide only abstract
interpretation of accuracy. Literal interpretation comes from
the positive predictive value, which would be 48%, and negative
predictive value, which would be 93% (at a prevalence of distress
of 23%). This means that the DT can be anticipated to register
one false positive for every two people scoring 4 or above on
the scale. Qualitative interpretation can be calculated using the
clinical utility index (available from www.clinicalutility.co.uk).
Against the HADS-T, the DT appears to be a poor case-finding
tool but is actually rated as a good method of screening for dis-
tress. Only one in every 20 people scoring less than 4 on the scale
would have clinically significant distress on the HADS. In a new
analysis for this chapter, three studies have examined the value of
one or two simple verbal depression questions as an alternative
screening procedure for distress (against using the HADS-T as
the criterion). Earlier work suggested that two questions, but not
one question, would be a reasonable initial screener for depres-
sion.17 Here, against distress, provisional evidence suggests simi-
lar results but with surprisingly low case-finding ability.
Distress can be defined using the HADS-T, but it can also
be defined by the proxy of any mental disorder (that is all dis-
orders combined), according to the DSM-IV, the DSM-5, or
the International Classification of Diseases and Related Health
Problems (ICD-10) (providing adjustment disorder is included).
Against DSM-IV distress (including adjustment disorders), a
meta-analysis from nine studies suggests that the DT is less suc-
cessful (than when looking for HADS-defined distress), with
poor case-finding and only fair screening performance (Table
48.1). However, an important note here is that by comparison
across 16 studies, the HADS had similar difficulties. Thus, nei-
ther the HADS nor the DT is recommended as a single step proxy
for mental disorder/adjustment disorder. In order to screen and
diagnose mental disorders, either a multi-step procedure or a
multi-domain approach is recommended (see Table 48.1), or
an experienced clinician using a semi-structured interview is
required.
Table48.1 Updated Summary of Distress Tools Validated in Multiple Cancer Settings

Compared with Any Weighted Weighted Weighted Positive Weighted Negative Clinical Utility for Clinical Utility
Mental Disorder Sensitivity Specificity Predictive Value Predictive Value Case-Finding for Screening
(incl Adjustment (CUI+) (CUI-)
disorder)
HADS (N=16) * 65.2% 77.2% 58.2% 82.0% 0.379 0.634
(overall (95% (95% (95% CI=55.4% to (95% (95% (95%
accuracy=73.3%) CI=62.3%68.1% CI=75.5%79.0%) 61.0%) CI=80.4%-83.7%) CI=0.3790.380) CI=0.6330.634)
Qualitative Qualitative
grade=poor grade=fair
Distress 84.0% 63.0% 52.4% 89.0% 0.449 0.558
Thermometer (95% (95% (95% (95% (95% (95%
(N=9) ** CI=80.0%88.0%) CI=61.0% 66.0%) CI=49.0%55.8%) CI=86.8%91.2%) CI=0.4480.450) CI=0.5570.559)
(overall Qualitative Qualitative
accuracy=69.9%) grade=poor grade=fair

Compared with Weighted Sensitivity Weighted Specificity Weighted Positive Weighted Negative Clinical Utility for Clinical Utility for
HADS-T Distress Predictive Value Predictive Value Case-Finding (CUI+) Screening (CUI-)
Distress 82.0% 73.0% 47.6% 93.1% 0.390 0.680
Thermometer (95% (95% (95% (95% (95% (95% CI
(N=27) ** CI=80.0%84.0%) CI=72.0%74.0%) CI=45.7% 49.4%) CI=92.4%93.9) CI=0.3890.391) =0.6790.680)
(overall Qualitative Qualitative
accuracy=75.1%) grade=poor grade=good
Single Verbal 76.1% 59.8% 25.7% 93.2% 0.195 0.557
Depression Question (95% (95% CI=55.4% to (95% CI=20.4% to (95% CI=90.4% to (95% CI=0.191199) (95%
(N=3) *** CI=67.2.0%85.0%) 64.1%) 31.0%) 96.0%) CI=0.5550.559)
Qualitative
(overall grade=very poor Qualitative
accuracy=62.3%) grade=fair
Two Verbal 75.5% 72.6% 37.6% 93.1% 0.283 0.676
Depression (95% (95% (95% (95% (95% (95%
Questions (e.g., CI=67.3%83.7%) CI=68.63%76.5%) CI=31.1%44.1%) CI=90.6%95.7%) CI=0.2790.288) CI=0.6750.677)
PHQ2) (N=3) ***
Qualitative Qualitative
(overall grade=very poor grade=good
accuracy=73.3%)
Single item Anxiety 77.9% 71.1 44.6% 91.5% 0.348 0.651
VAS (AnxT or (95% (95% (95% (95% (95% (95%
ESAS-A) (N=3) *** CI=73.0%82.8%) CI=68.1%74.1%) CI=40.1%49.1%) CI=89.4%93.6%) CI=0.3350.350) CI=0.6500.661)
(overall Qualitative Qualitative
accuracy=71.9%) grade=very poor grade=good
Single item 76.8% 70.5% 43.2% 91.0% 0.336 0.642
Depression VAS (95% (95% (95% (95% (95% (95%
(DepT or ESAS-D) CI=64.0%87.5%) CI=55.783.3%) CI=39.2%48.2%) CI=88.9%93.2%) CI=0.3340.338) CI=0.6410.643)
(N=3) ***
Qualitative grade Qualitative grade
(overall =very poor =good
accuracy=71.9%)

CUI = clinical utility index

All calculations from www.clinicalutility.co.uk
* data from Mitchell AJ, Meader N, Symonds P.Diagnostic validity of the Hospital Anxiety and Depression Scale (HADS) in cancer and palliative settings:a meta-analysis. J Affect Disord.
2010 Nov;126(3):335348.
** data adapted from Ma X, Zhang J, Zhong W, Shu C, Wang F, Wen J, Zhou M, Sang Y, Jiang Y, Liu L. The diagnostic role of a short screening tool-the distress thermometer: a meta-

analysis. Support Care Cancer. 2014 Jul;22(7):17411755. doi: 10.1007/s00520-014-2143-1. Epub 2014 Feb 8.
*** new calculation for this chapter

DISTRESS SCREENING AS PART OF
MULTI-DOMAIN SCREENING
Several multi-domain tools have been developed that encom-
pass several emotional or several biopsychosocial domains. The
Edmonton Symptom Assessment System (ESAS) includes nine
physical symptoms of cancer (pain, tiredness, nausea, depression,
anxiety, drowsiness, appetite, well-being, shortness of breath) and
three psychosocial symptoms (well-being, depression, anxiety).
Provisional evidence suggests reasonable performance in diag-
nostic validity studies of distress based on the HADS-T. However,
no implementation studies have been published.
Mitchell and colleagues proposed a multi-domain extension to
the distress thermometer called the Emotion Thermometers (ET;
see www.psycho-oncology.info/ET.htm) including four core emo-
tions:distress, depression, anxiety, and anger. Optional add-ons
include need for help, quality of life, and pain. The ET has the
same 11-point visual-analogue scale as the DT. Preliminary vali-
dation in early and late stage cancer (and also in cardiology and
neurology) settings suggest that the ET improves on the accuracy
of the DT.28 For example, the depression thermometer of the
ET appears to be more accurate than the DT when identifying
DSM-IV depression. A recent replication from an independent
group adds weight to this observation.29
Initial results from three independent studies comparing the
ESAS and HADS-T, as well as the ET and HADS-T, have recently
become available. Considering the similarities of thermometer
format in the ET and visual-analog format of the ESAS combina-
tion, it is feasible to compare their single-item ratings of anxiety/
depression with the HADS-T score. Results suggest sensitivity of
77.9% and 76.8% and specificity of 71.1% and 70.5%, respectively.
Given the low sample size, these results should be considered
provisional.
IMPLEMENTATION OF DISTRESS
SCREENING INTO CLINICAL PRACTICE
Well-designed, large-scale studies comparing care before and
after implementation of screening (sequential cohort) or in groups
randomized to screening have been uncommon.30 In fact, only
eight implementation studies exist, and these have measured one
key outcome:receipt of a psychosocial referral (see Table 48.2).
From these eight implementation studies (of which only one is a
randomized trial), the additional likelihood (risk difference) of
receiving a psychosocial referral if screened is only 11.6%. This
is modest, but given the very low base rate of receiving help, this
represents a relative risk of receiving a psychosocial referral of
threefold in cancer patients who were screened versus those not
screened. This observation demonstrates that the number of
patients offered referral at baseline is probably a rate-limiting step
in screening success, and almost certainly suboptimal in most
centers. There is inconsistent evidence that distress screening
increases PROMs in cancer. For example, in one British study, 28
oncologists treating 286 cancer patients were randomly assigned
to an intervention group who underwent screening along with
feedback of results to physicians, a screen-only group who com-
pleted questionnaires without feedback, and a control group with
no screening at all.31 The questionnaires used were the EORTC
QLQ-C30 and a touch-screen version of HADS. Apositive effect
Chapter48 screening and assessment for distress 387
on emotional well-being was seen in the intervention compared
with the control group, but there was no detectable effect on
patient management.
ENHANCED DISTRESS SCREENING
Given the somewhat disappointing effects of distress screening in
implementation studies, how can the effectiveness of screening be
improved in clinical practice? There are four simple enhancements
that may prove beneficial.32 First, combine distress screening with
screening for QoL or other domains (e.g., depression, anxiety).
Second, combine distress screening with mandatory follow-up or
clarification of who wants help for unmet needs. Third, combine
screening with repeated assessment (that is, either case-finding
or repeat screening). Fourth, combine screening with audit of
minimally adequate care. There is evidence to discuss the first two
options in more detail.
In a Canadian study, Carlson etal. (2010) examined the effect
of screening for distress on the level of distress in lung and breast
cancer patients randomized to minimal screening (with no feed-
back of results), full screening (with feedback of results), or screen-
ing with optional triage and referral (enhanced screening). 33 This
was one of the largest studies to date, with over 1000 patients, 365
in minimal screen, 391 in full screen, and 378 in screening with
triage. In lung cancer patients who received enhanced screen-
ing, distress was reduced by 20% at follow-up compared to other
groups. In breast cancer, patients in both the full screening and
enhanced screening groups had lower distress at follow-up than
those who received minimal screening. These results suggest a
modest but potentially significant beneficial effect of screening
for distress in oncology clinical practice, provided follow-up care
is provided to those who screen positive. Arecent review looked
at all the evidence to date regarding screening distress together
with screening for QoL (Carlson et al., 2013).11 Carlson et al.
found 13 randomized and 10 non-randomized trials of screening
for distress/QoL that measured patient well-being. Of the RCTs,
5 of 13 reported added benefits on patient well-being compared
with unscreened patients. The second option is to offer manda-
tory follow-up (enhanced screening). Screening with mandatory
follow-up is likely to be beneficial compared with no screening
(and treatment as usual). 34 Three implementation studies have
examined mandatory follow-up, and one implementation study
clarified who did and did not want further psychosocial help (see
Table 48.3). Combining these studies in a meta-analysis shows
that enhanced screening increased the chances of receiving
a psychosocial referral by twofold (RR=2.03, 95% CI=1.13 to
3.65; Chi=6.56, p < 0.01) (Figure 48.1), compared to those with
non-enhanced screening. The magnitude of this difference is
about 9%, meaning that enhanced screening effectively doubles
the effect of screening alone.
DISCUSSION
The success of screening in routine care depends on accuracy, but
it also depends on acceptability. This is acceptability not just for
the screening procedure, but for its scoring interpretation and any
linked follow-up and treatment. Several studies have reported that
under optimal conditions it is possible to screen large numbers
of patients with few refusals. These large screening programs are
Table48.2 Summary of Interventional Implementation Screen vs. No Screen Studies

Author Designed Total Main Quality of Distress Age Gender Early or Clinic Setting Cancer Type Country Primary Outcomes
Sample Care Outcome Studied? (Female %) Palliative/Late
Screened* (Instrument)

Non-Randomized Design

Boyes A, Newell S, Alternate 95 Change Yes (HADS) 2080 60 Mixed Outpatients Mixed Australia Primary outcomes:No significant
Girgis A, etal. Does feedback vs. no in anxiety, (no mean differences between the groups in
routine assessment feedback depression reported) changes in anxiety, depression.
and real-time feedback Intervention patients reporting
improve cancer patients physical symptoms at visit 1 less
psychosocial well-being? likely to report at visit 3.
Eur J Cancer Care (Engl).
Secondary outcome:No significant
2006;15:163-171.
differences between the groups
in the proportion of patients
reporting any moderate/high
unmet needs.
Bramsen I, van der Linden Sequential 173 Referral for Yes 54 50.3 Mixed Inpatients and Mixed Netherlands Psychosocial care received by
MH, Eskens FJ, Bijvank cohort study psychosocial (GHQ12, IES) outpatients 24% in the screening group,
EM, van Groeningen care
18% in the medical records group,
CJ, Kaufman HJ,
and 8% in the usual care group.
Aaronson NK. Evaluation
of a face-to-face Change from baseline to follow-up
psychosocial screening on the QLQ-C30 favored
intervention for cancer screening, and the screening group
patients:acceptance and scored significantly better on the
effects on quality of life. GHQ-12 positive mental health
Patient Educ Couns. 2008 scale.
Jan;70(1):6168.
Grassi L, Rossi E, Sequential 2851 Referral to Yes (DT) (52.2% 60.3 59 Mixed Outpatient clinics Mixed Italy Control group:153/2268 (6.1%)
Caruso R, Nanni MG, cohort study Psycho- prevalence) were referred to psycho-oncology;
Pedrazzi S, Sofritti S, (retrospective oncology 31.4% of referred DT < 4
Sabato S.Educational comparison) services (non-case) when assessed by
intervention in cancer psycho-oncology [words missing?]
outpatient clinics on Screened group:544/1107
routine screening for screened; 52.2% DT 4
emotional distress:an and 284 (25.7%) referred to
observational study. psycho-oncology.
Psycho-Oncology. 2011
Jun;20(6):669674.
Ito T, Shimizu K, Ichida Sequential 998 Referral to Yes (DIT) 61.4 66 Mixed Outpatient clinics Mixed Japan No difference in proportion
Y, etal. Usefulness of cohort study psychiatric referred (1% usual care vs. 2.7%
pharmacist-assisted (retrospective service. intervention);
screening and psychiatric comparison) fewer days between treatment
referral program for and visit psychiatric service for
outpatients with intervention (12.9 vs. 55.6days).
cancer undergoing
chemotherapy.
Psycho-Oncology.
2011;20:647654.
Pruyn JF, Heule-Dieleman Non- 229 Number of Yes (Custom 61.4 45.2 Mixed Outpatient clinics Mixed Netherlands Screening checklist assisted
HA, Knegt PP, Mosterd randomized consultations screening specialists to be more often
FR, van Hest MA, Sinnige side-by-side with discussion checklist) pro-active in discussing
HA, Pruyn AT, de Boer comparison of of emotional psychosocial problems with their
MF. On the enhancement screen vs. no problems patients, and more patients with
of efficiency in care screen in two by patient psychosocial problems were
for cancer patients in hospitals self-report referred.
outpatient clinics:an
instrument to accelerate
psychosocial screening
and referral. Patient
Educ Couns. 2004
May;53(2):135140.
Shimizu K, Ishibashi Sequential 1065 Referral to Yes (DIT) 5811.3 94.1 Stage I, II, III, IV Outpatient clinics Breast and Japan Significantly more patients referred
Y, Umezawa S, etal. cohort study Psycho- Gyne- during intervention (5.3%) than
Feasibility and usefulness (retrospective oncology Service cological usual care (0.3%).
of the distress screening comparison) Of high distressed, 93% referred to
program in ambulatory service; 25% accepted.
care in clinical oncology
practice. Psycho-Oncology.
2010;19:718725.
Thewes B, Butow P, Sequential 83 Referral for Yes (DT/ 60 38 Mostly early Outpatient clinics Mixed Australia 44% scored DT 5; of these, 10
Stuart-Harris R, etal. Does cohort study psychosocial Psych-6) (44% within 2 mos of (53%) were referred to a social
routine psychological care prevalence) diagnosis worker or psychologist.
screening of newly No significant difference in
diagnosed rural cancer PSYCH-6 between cohorts in %
patients lead to better who where cases.
patient outcomes?
Secondary outcomes:
results of a pilot study.
Aust J Rural Health. time to referral shorter in screened
2009;17:298304. cohort (5 vs. 14days);
screened cohort reported higher
unmet information, psychological
and daily living needs at 6 months

(continued)
Table48.2(Continued)

Author Designed Total Main Quality of Distress Age Gender Early or Clinic Setting Cancer Type Country Primary Outcomes
Sample Care Outcome Studied? (Female %) Palliative/Late
Screened* (Instrument)

Randomized Design

Maunsell E, Brisson Randomized 215 Change in Yes (GHQ20) 2285 100 Mixed Outpatient clinics Breast Canada Primary outcome:Distress
J, Deschenes L, 2-arm screen vs. distress, (no mean cancer decreased over time (both groups)
Frasure-Smith no screen (using depression or given) but there were no between-group
N.Randomized trial of telephone based anxiety differences in distress, physical
a psychologic distress application of health, usual activities, return to
screening program after GHQ20) work, marital satisfaction, use of
breast cancer:effects on other psychosocial services, or
quality of life. J Clin Oncol. medical consultations.
1996;14:27472755.
Sarna L.Effectiveness Randomized 48 Symptoms Yes (SDS and 62 NR Late Outpatient clinics Lung cancer United Feedback was associated with
of structured nursing 2-arm screen (no distress:SDS HADS) States better SDS scores with time, most
assessment of symptom feedback) vs. no measured apparent at 6 mos. Significant in
distress in advanced lung screen monthly for 6 multivariate model.
cancer. Oncol Nurs Forum. mos
1998;25(6):10411048.
McLachlan SA, Allenby Randomized 450 Change in Yes (BDI) 61(1891) 41 Mixed Outpatient clinics Mixed Australia No between-group difference
A, Matthews J, Wirth 2-arm screen (no depression and in changes in psychological/
A, Kissane D, Bishop M feedback) vs. no unmet needs information needs but greater
etal. Randomized trial of screen decrease in depression at 6 mos (in
coordinated psychosocial patients depressed at baseline).
interventions based on
patient self-assessments
versus standard care to
improve the psychosocial
functioning of patients
with cancer. J Clin Oncol.
2001;19:41174125.
Rosenbloom SK, Randomized 213 Change in Yes (POMS-17) 59 67 Late Outpatient clinics Metastatic US Satisfaction and QoL did not
Victorson DE, Hahn 3-arm feedback depression and breast, lung, change; no differences across
EA, Peterman AH, Cella vs. no feedback QoL or colorectal groups in changes in QoL or
D.Assessment is not vs. no feedback cancer satisfaction over time (FLIC or
enough:a randomized but structured PSQ-III).
controlled trial of discussion Secondary outcomes:no
the effects of HRQL statistically significant differences
assessment on quality across groups in changes in clinical
of life and satisfaction treatment.
in oncology clinical
practice. Psycho-Oncology.
2007;16:10691079.
 Hollingworth W, Metcalfe Randomized 2 220 Change in Yes (DT+POMS) 61.5 70.1% Mixed Outpatient clinics 49% UK POMS-SF and EORTC scores
C, Mancero S, Harris arm screen No distress, (37% prevalence) breast, 27% in both arms deteriorated at 1
S, Campbell R, Biddle feedback vs. no depression and urological, mo then improved at 6 mos,
L, McKell-Redwood D, screen QoL 24% other particularly in the fatigue subscale.
Brennan J.Are needs cancer sites There was no evidence that
assessments cost effective patients randomized to the
in reducing distress DT&PL had better POMS-SF
among patients with (mean post-treatment difference
cancer? a randomized 0.58 but non-significant), EORTC,
controlled trial using the or subscale scores compared to
distress thermometer control.
and problem list. J
Clin Oncol. 2013 Oct
10;31(29):36313638.
Braeken APBM, Kempen Randomized 568 Referral to Yes 62.4 68.3 Mixed / Early Outpatients in Mixed Germany Patients who completed the
GIJM, Eekers D, etal. 2-arm screen vs psychosocial (SIPP) Radiotherapy screening instrument were
The usefulness and no screen services referred to social workers at an
feasibility of a screening earlier stage than patients who
instrument to identify did not (P < 0.01). No effects on
psychosocial problems in improved patientradiotherapist
patients receiving curative communication or overall
radiotherapy:a process psychosocial distress and HRQOL.
evaluation. BMC Cancer.
2011;11(479), and
Braeken AP, Lechner L,
Eekers DB, Houben RM,
van Gils FC, Ambergen
T, Kempen GI. Does
routine psychosocial
screening improve
referral to psychosocial
care providers and
patient-radiotherapist
communication? a cluster
randomized controlled
trial.
Patient Educ Couns. 2013
Nov;93(2):289297.

Total sample screened*includes patients screened before and after introduction of screening.
DT=Distress Thermometer; DIT=Distress and Impact Thermometer; IES=Impact of Events Scale; GHQ=General Health Questionnaire; HADS=Hospital Anxiety and Depression Scale; SDS=Symptom Distress Scale
Table48.3 Summary of Interventional Implementation Basic Screen vs. Enhanced Screen Studies

Author Designed Total Sample Main Quality Of Distress Studied? Age Gender Early or Clinic Setting Cancer Type Country Primary Outcomes
Screened* Care Outcome (Instrument) (Female %) Palliative/
Late

Carlson LE, Groff SL,
Maciejewski O, Bultz BD.
Screening for distress
in lung and breast
cancer outpatients: a
randomizedcontrolled
trial. J Clin Oncol. 2010
Nov20;28(33): 4884-91.
Epub 2010 Oct 12.
Carlson LE, Waller A,
Groff SL, Zhong L, Bultz
BD. Online screening
for distress, the 6th vital
sign, in newly diagnosed
oncology outpatients:
randomized controlled
trial of computerised vs
personalised triage.
Br J Cancer. 2012 Aug
7;107(4):617625. doi:
10.1038/bjc.2012.309. Epub
2012 Jul 24.
Randomized 23-arm 1525 Referral to Yes 62.5 72 Mixed / Outpatients in Mixed Canada Primary outcome: marginally
screen vs. screen + psychosocial (DT) Early Radiotherapy significant differences between
feedback vs. screen + services triage and minimal screen
(55.4% prevalence)
feedback + follow-up groups.
Lung only: 20% fewer in triage
group reported continued high
distress at follow-up compared
to other groups.
Breast only: full screening and
triage groups had lower distress
at follow-up than minimal
screening.
Secondary outcomes: no
between-group differences
in anxiety or depression; best
predictor of decreased anxiety
and depression was referral to
psychosocial services.
Randomized 2-arm 3133 Referral+ Yes 62.5 72 Mixed / Outpatients in Mixed Canada Primary outcomes: significant
screen vs. screen + receipt of (PSSCAN+ DT) Early radiotherapy decreases in all outcomes over
feedback + follow-up psychosocial time in both groups; however,
(56% prevalence
services no differences between groups.
Secondary outcome:
personalized triage group and
patients with higher symptom
burden more likely to access
services. Access related to
greater decrease in distress,
anxiety, and depression.
 Thaln-Lindstrm A, Randomized 2-arm 495 Referral+ receipt Yes 61 58 Mixed (22% Scren on first Mixed Sweden In enhanced screening, 43%
Larsson G, Glimelius B, screen + usual care vs. of psychosocial (HADSA & palliative) visit Oncology of screened group patients
Johansson B. Anxiety screen + follow-up services HADS-D) Department attended clinical assessment,
and depression in resulting
oncology patients: a in subsequent psychosocial
longitudinal study of a support for 20 (24%) of them
screening, assessment vs. 5% in usual care. There were
and psychosocial support no differences between the
intervention. Acta Oncol. SCG and IG regarding anxiety,
2013 Jan;52(1):118127. depression, or HRQOL at any
time point.
Bauwens S, Baillon C, Sequential cohort study 582 Referral+ receipt Yes (DT) 58.9 67.9 Mixed Outpatient Mixed Germany Without unstructured
Distelmans W, Theuns P. screen vs. screen + desire of psychosocial (40.6%) clinics screening (usual care) 5.5% of
et al Systematic screening for help questionnaire services patients detected
for distress in oncology with distress were actually
practice using the Distress referred to psychosocial
Barometer: the impact on counseling, compared
referrals to psychosocial with 69.1% using enhanced
care. screening, but only a minority
Psycho-Oncology. 2014 accepted referral.
July;23(7):804811.

Total sample screened*includes patients screened before and after introduction of screening.
DT=Distress Thermometer; DIT=Distress and Impact Thermometer; HADS=Hospital Anxiety and Depression Scale; PSSCAN=Psychosocial Screen for Cancer
394 Section VIII screening and assessment in psychosocial oncology
Relative risk meta-analysis plot (random effects)
Shimizu et al. (2010) [Screen]
Grassi et al. (2011) [Screen]
Pruyn et al. (2004) [intervention]
Bramsen et al. (2008) [intervention]
lto et al. (2011) [Screening]
Thewes et al. (2009) [Screening]
Braeken et al. (2011) [intervention]
Hilarius et al. (2008) [intervention]
combined [random]
0.5
Figure48.1 Increase in psychosocial referrals from screening for distress (vs. no screening). For references, see Table 48.2.
often assisted by funded researchers or investment in computer-
ized touch-screen terminals. Reception to screening programs run
by front-line clinicians is more mixed. For example, physicians in
Leeds, United Kingdom, found QoL screening quite useful in 43%
of encounters but little use in 30%.21 Mitchell et al. (2012) reported
that British cancer clinicians felt screening was useful in only 43%
of assessments and not useful in 36%.35 Thaln-Lindstrm and col-
leagues (2013) found that 57% of screen-positive patients refused
further assessment, but ultimately enhanced screening led to sup-
port and treatments for 24% of the screen-positive patients versus
only 2% in those screened under usual care conditions.36 Thus, if
both the clinician and patient are an integral part of screening,
they should be consulted and involved in program development
and the possibility of refinement.
Despite strong recommendations by many professional soci-
eties and accreditation agencies, to date very few cancer centers
have adopted routine screening for distress or depression or QoL
or unmet needs. This chapter and updated meta-analysis show
that enhanced screening for distress has the most potential to
positively influence referral for psychosocial care but that posi-
tive outcomes are not invariable. Detractors of distress screening
raise several valid concerns. Barriers to success must be addressed
if screening has any chance of effectiveness. Further, the accept-
ability of screening to staff and patients cannot be assumed. When
conducted by front-line clinicians, screening is often seen as a
burden, especially when additional time is required in adminis-
tration, scoring, interpretation, or treatment. Screening success
thus depends on three key variables:accuracy, acceptability, and
high-quality follow-up care.
In the past, screening research tended to focus only on clinical
depression. Screening for depression, although important, can-
not encompass the entire patient experience. Indeed, the major-
ity of distressed patients are not suffering from major depression
according to DSM-IV and DSM-5 criteria. Assessment of distress
and possibly screening for distress should not be considered a
one-off exercise but rather should form part of high-quality care.
Thorough and timely psychological assessment will enhance
trust and therapeutic alliance, particularly when it involves the
22.80 (6.13, 85.31)
7.22 (6.07, 8.59)
7.09 (1.83, 27.90)
3.05 (1.30, 7.46)
2.66 (1.28, 5.53)
1.49 (0.56, 4.05)
1.33 (0.98, 1.81)
1.01 (0.75, 1.36)
3.16 (1.39, 7.20)
1 2 5 10 100
relative risk (95% confidence interval)
clinician directly. Psychosocial needs are the most overlooked of
all cancer complications. Psychological assessment and enhanced
distress screening, together with appropriate follow-up and tai-
lored acceptable interventions, will help reduce this gap in unmet
psychosocial needs.
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 CHAPTER49
Screening and Assessment
for Delirium and Dementia
Reena Jaiswal, Yesne Alici, and William S.Breitbart
INTRODUCTION
Cognitive syndromes are commonly encountered among cancer
patients. Although aging is an important risk factor for cognitive
disorders, in oncology settings there are additional risk factors,
including primary or metastatic brain tumors, medical comorbid-
ities, cancer treatments, and depression, that place all age groups
at risk for cognitive syndromes. Delirium, a common cognitive
syndrome among hospitalized cancer patients, has been shown
to increase risk of long-term cognitive impairment. Patients with
cognitive deficits may not be able to carry out activities of daily
living, such as medication taking, food preparation, and transpor-
tation. Treatment adherence, vigilance in monitoring and report-
ing of the cancer and cancer treatment-related symptoms, and the
ability to make informed decisions on cancer treatment options
necessitate intact cognitive functioning. Therefore screening for
cognitive syndromes among cancer patients is an important part
of initial assessment, particularly in high-risk populations.
This chapter will provide a comprehensive review of the screening
and assessment measures used to identify and assess patients with
delirium and/or dementia. Abrief overview of common dementia
syndromes is also included as relevant to psycho-oncologists car-
ing for older adults with cancer. Readers should refer to Chapter50
for a comprehensive review of screening and assessment of cancer
and cancer treatment-related cognitive changes.
DELIRIUM
Delirium is the most common cognitive syndrome encountered
among hospitalized cancer patients. The prevalence of delir-
ium ranges between 25% and 40% among cancer patients, with
higher rates (i.e., up to 85%) occurring among the terminally ill.1
A detailed overview of delirium in cancer patients is provided
in Chapter40. In the following sections we review the screening
and assessment of delirium among cancer patients, along with a
review of the screening and assessment tools available for use in
cancer patients.
Delirium:Screening and Assessment
Delirium is an acute change in level of alertness, awareness, atten-
tion, cognition, and behavior secondary to a general medical
condition or medications. Sleep-wake cycle changes, disordered
thought process, incoherent speech, psychomotor retardation or
agitation, and perceptual disturbances are supportive features of
delirium. Patients with psychomotor retardation are frequently
mistaken for suffering from depression by clinicians. Emergent
psychiatry consults for patients with suicidal ideation not uncom-
monly reveal cases with unrecognized delirium. Cognitive distur-
bances can comprise a myriad of deficits, including disorientation,
executive dysfunction, memory impairment, visuospatial deficits,
and language disturbances. History obtained from family, staff,
and other caregivers is critical for delirium diagnosis. Acute onset
and fluctuating course are the main distinguishing features of
delirium from dementia and other cognitive syndromes.
Physical exam should focus on signs of infection, sepsis,
dehydration, hypoxia, withdrawal states, and intoxication.
Examination for focal neurological findings, myoclonus, and
frontal release signs are the essential components of neurological
exam in patients with delirium.
Laboratory testing including comprehensive metabolic panel,
complete blood count, vitamin B12 and thiamine levels, thyroid
function tests, urinalysis, blood cultures, and brain imaging
should be considered, based on history and physical examina-
tion findings, to identify underlying medical etiologies. Review
of the medication list and recent dose changes and comparison
with home medication lists should be completed to rule out delir-
ium due to medications. An electroencephalogram (EEG) may be
helpful in diagnosing non-convulsive status epilepticus that may
solely present with acute onset mental status changes. Generalized
slowing on EEG can be helpful in differentiating delirium from
depression, where such a finding would not be expected. Patients
with dementia can also present with generalized slowing findings
on EEG.
The gold standard diagnosis of delirium is the clinicians
assessment based on the Diagnostic and Statistical Manual of
Mental Disorders (DSM-5) delirium diagnostic criteria. There
are several assessment and rating scales developed specifically
for delirium, each with its own strengths and weaknesses (see
Table49.1).2,3 The Confusion Assessment Method (CAM), devel-
oped by Inouye and colleagues in 1990, provides a screening
algorithm with four items (acute onset and fluctuating course,
inattention, and either disorganized thinking or altered level
of consciousness) that can be used by nurses and others with
 Chapter49 delirium and dementia 397

Table49.1 Overview of Commonly Used Delirium Screening and Assessment Scales

Confusion Assessment Method
(Inouye etal., 1990)4
Delirium Rating Scale-R-988
Memorial Delirium
Assessment Scale9,25
Most commonly used delirium screening instrument in general medical settings, specifically among older adults.
Four-item algorithm can be used to quickly screen for delirium.
Requires well-trained raters.
Excellent psychometric properties when used by well-trained raters.
Cognitive testing is required to assess the cognitive items of the scale.
Validated for use in a number of languages.
For severity assessment, CAM-S has been developed.
Delirium Rating Scale-R-98 was developed by Trzepacz and colleagues, to address shortcomings of the Delirium
Rating Scale, including the inability to distinguish between subtypes of delirium, lack of a separate item for attention
deficits, and a lack of clarification for clouding of consciousness.
Includes 16 clinician-rated items, 13 for severity and 3 for diagnosis. The rating is applicable to the preceding 24 hours.
It successfully differentiates delirium from dementia, depression, and schizophrenia.
Administered by trained clinicians.
It has excellent psychometric properties.
It is mostly used for phenomenological and treatment research purposes.
It has been validated in different languages.
MDAS assesses for the subtype and severity of delirium.
MDAS has 10 items, rated from 0 (none) to 3 (severe), with a maximum possible score of 30.
Ascore of 13 has been recommended as a cut-off for establishing the diagnosis of delirium in oncology settings.

Acutoff score of 7 has yielded the highest sensitivity and specificity rates for delirium diagnosis in palliative care
settings25
It has excellent psychometric properties.

It distinguishes between patients with delirium, dementia, or no cognitive impairment.

It has been validated in a number of different languages.

It is the most widely used delirium assessment scale in oncology and palliative care settings.

Physician-rated.

Takes about 1015 minutes to administer.

Nursing Delirium Screening Scale
(Nu-DESC)22
Nu-DESC has been adapted from a former delirium assessment tool, namely Confusion Rating Scale.
Composed of 5 items including orientation, behavior, communication, perceptual disturbances, and psychomotor
retardation.
It allows for continuous symptom assessment.
It has been validated for use in oncology settings.
Administered by nursing.
Takes about 12 minutes.
It has good psychometric properties.
It has been validated in other languages.

less advanced psychiatric training.4 However, the sensitivity of
the CAM can be significantly affected by the experience of the
user. Estimated administration time is under five minutes. The
CAM is not useful in assessing the severity of delirium, but the
CAM-S, a recently developed version of the CAM, can be used to
assess delirium among medically ill older adults.5 Ely and col-
leagues developed the Confusion Assessment Method for ICU
(CAM-ICU) for use in nonverbal patients, such as those who
are mechanically ventilated.6 It is important to limit its use to
nonverbal, mechanically ventilated patients in intensive care unit
settings due to its low sensitivity in detecting delirium in other
settings.7 The Delirium Rating Scale-Revised 98 (DRS-R-98) is a
16-item scale (13 severity and 3 diagnostic items) that can be used
to measure severity of delirium as well as to differentiate delirium
from dementia, depression, or schizophrenia. It is designed to be
administered by an experienced expert and has been found to
be highly sensitive.8 The Memorial Delirium Assessment Scale
(MDAS) is a physician-rated scale that can be used to measure
the severity of delirium in addition to diagnosis of delirium (see
Box 49.1). It has 10 items and takes under 15 minutes to complete.
This instrument was designed to be administered at several time
points in the same day to assess changes in delirium severity.9 The
MDAS and DRS-98 include items to assess cognitive impairment;
therefore, additional cognitive assessment tools are not required
when assessing delirium with them. Acognitive assessment tool
is required to reliably assess a delirious patients attention dis-
turbances and other cognitive impairment when using the CAM
algorithm to diagnose delirium.
Box 49.1 Memorial Delirium Assessment Scale (MDAS)

Item 1.Reduced Level of Consciousness (Awareness):Rate the patients current awareness of and interaction with the environment
(interviewer, other people/objects in the room; e.g., ask patients to describe their surroundings).
0: none (patient spontaneously fully aware of environment and interacts appropriately)
1: mild (patient is unaware of some elements in the environment, or not spontaneously interacting appropriately with the inter-
viewer; becomes fully aware and appropriately interactive when prodded strongly; interview is prolonged but not seriously
disrupted)
2: moderate (patient is unaware of some or all elements in the environment, or not spontaneously interacting with the interviewer;
becomes incompletely aware and inappropriately interactive when prodded strongly; interview is prolonged but not seriously
disrupted)
3: severe (patient is unaware of all elements in the environment with no spontaneous interaction or awareness of the interviewer, so
that the interview is difficult to impossible, even with maximal probing).
Item 2.Disorientation:Rate current state by asking the following 10 orientation items:date, month, day, year, season, floor, name of
hospital, city, state, country.
0: none (patient knows 910 items)
1: mild (patients knows 78 items)
2: moderate (patients knows 56 items)
3: severe (patient knows no more than 4 items)
Item 3.Short-Term Memory Impairment:Rate current state by using repetition and delayed recall of 3 words (patient must imme-
diately repeat and recall words 5 later after an intervening task. Use alternate sets of 3 words for successive evaluations [e.g., apple,
table, tomorrow; sky, cigar, justice]).
0: none (all 3 words repeated and recalled)
1: mild (all 3 repeated, patient fails to recall 1)
2: moderate (all 3 repeated, patient fails to recall 23)
3: severe (patient fails to repeat 1 or more words)
Item 4.Impaired Digit Span:Rate current performance by asking subjects to repeat first 3, 4, then 5 digits forward and then 3, then
4 backward; continue to the next step only if patient succeeds at the previousone.
0: none (patient can do at least 5 numbers forward and 4 backward)
1: mild (patient can do at least 5 numbers forward, 3 backward)
2: moderate (patients can do 45 numbers forward, cannot do 3 backward)
3: severe (patient can do no more than 3 numbers forward)
Item 5.Reduced Ability to Maintain and Shift Attention:As indicated during the interview by questions needing to be rephrased
and/or repeated because patients attention wanders, patient loses track, patient is distracted by outside stimuli or is over-absorbed in
atask.
0: none (none of the above; patient maintains and shifts attention normally)
1: mild (above attentional problems occur once or twice without prolonging the interview)
2: moderate (above attentional problems occur often, prolonging the interview without seriously disrupting it)
3: severe (above attentional problems occur constantly, disrupting and making the interview difficult to impossible)
Item 6.Disorganized Thinking:As indicated during the interview by rambling, irrelevant, or incoherent speech, or by tangential,
circumstantial, or faulty reasoning. Ask patient a somewhat complex question (e.g., Describe your current medical condition).
0: none (patients speech is coherent and goal-directed)
1: mild (patients speech is slightly difficult to follow; responses to questions are slightly off target but not so much as to prolong the
interview)
2: moderate (disorganized thoughts or speech are clearly present, such that interview is prolonged but not disrupted)
3: severe (examination is very difficult or impossible due to disorganized thinking or speech)
(continued)
Box 49.1(Continued)

Item 7.Perceptual Disturbance:Misperceptions, illusions, hallucinations inferred from inappropriate behavior during the interview
or admitted by subject, as well as those elicited from nurse/family/chart accounts of the past several hours or of the time since last
examination:
0: none (no misperceptions, illusions or hallucinations)
1: mild (misperceptions or illusions related to sleep, fleeting hallucinations on 12 occasions without inappropriate behavior)
2: moderate (hallucinations or frequent illusions on several occasions with minimal inappropriate behavior that does not disrupt
the interview)
3: severe (frequent or intense illusions or hallucinations with persistent inappropriate behavior that disrupts the interview or inter-
feres with medical care)
Item 8.Delusions:Rate delusions inferred from inappropriate behavior during the interview or admitted by the patient, as well as
delusions elicited from nurse/family/chart accounts of the past several hours or of the time since the previous examination.
0: none (no evidence of misinterpretations or delusions)
1: mild (misinterpretations or suspiciousness without clear delusional ideas or inappropriate behavior)
2: moderate (delusions admitted by the patient or evidenced by his or her behavior that do not or only marginally disrupt the inter-
view or interfere with medical care)
3: severe (persistent and/or intense delusions resulting in inappropriate behavior, disrupting the interview or seriously interfering
with medical care)
Item 9.Decreased or Increased Psychomotor Activity:Rate activity over past several hours, as well as activity during interview, by
circling
a:hypoactive b:hyperactive c:elements of both present
0: none (normal psychomotor activity)
a b c 1: mild (Hypoactivity is barely noticeable, expressed as slightly slowing of movement. Hyperactivity is barely noticeable or
appears as simple restlessness.)
a b c 2: moderate (Hypoactivity is undeniable, with marked reduction in the number of movements or marked slowness of move-
ment; subject rarely spontaneously moves or speaks. Hyperactivity is undeniable, subject moves almost constantly; in
both cases, exam is prolonged as a consequence.)
a b c 3: severe (Hypoactivity is severe; patient does not move or speak without prodding or is catatonic. Hyperactivity is severe;
patient is constantly moving, overreacts to stimuli, requires surveillance and/or restraint; getting through the exam is
difficult or impossible.)
Item 10. Sleep-Wake Cycle Disturbance (Disorder Of Arousal):Rate patients ability to either sleep or stay awake at the appro-
priate times. Utilize direct observation during the interview, as well as reports from nurses, family, patient, or charts describing
sleep-wake cycle disturbance over the past several hours or since last examination. Use observations of the previous night for morn-
ing evaluationsonly.
0: none (at night, sleeps well; during the day, has no trouble staying awake)
1: mild (mild deviation from appropriate sleepfulness and wakefulness states:at night, difficulty falling asleep or transient night
awakenings, needs medication to sleep well; during the day, reports periods of drowsiness or, during the interview, is drowsy but
can easily fully awaken him- or herself)
2: moderate (moderate deviations from appropriate sleepfulness and wakefulness states:at night, repeated and prolonged night
awakening; during the day, reports of frequent and prolonged napping or, during the interview, can only be roused to complete
wakefulness by strong stimuli)
3: severe (severe deviations from appropriate sleepfulness and wakefulness states:at night, sleeplessness; during the day, patient
spends most of the time sleeping or, during the interview, cannot be roused to full wakefulness by any stimuli)

Adapted from Breitbart W, Rosenfeld B, Roth A, Smith MJ, Cohen K, Passik S. The Memorial Delirium Assessment Scale. J Pain Symptom Manag.
1997 Mar;13(3):128137.
400 Section VIII screening and assessment in psychosocial oncology
Recommendations For Future Research on Screening
and Assessment of Delirium in Oncology Settings
Delirium is associated with increased morbidity and mortality,
with increasing evidence for long-term cognitive impairment fol-
lowing an episode of delirium. A meta-analysis by Witlox and
colleagues found that delirium in elderly patients is associated
with increased risk of death (38% vs. 28% in controls) at aver-
age follow-up of 23months, increased risk of institutionalization
(33% vs. 11%) at average follow-up of 15months, and increased
risk of dementia (63% vs. 8%) at average follow-up of 4years.10 The
growing data on short-term and long-term outcomes of delirium
strongly support the need to screen for delirium among hospital-
ized patients.
Development of delirium predictive risk models specific to can-
cer patients will help identify patients at highest risk for delirium
who might benefit most from delirium prevention interven-
tions. Current guidelines on the assessment of delirium in can-
cer patients, including the assessment of etiologies, risk factors,
and phenomenology, is largely based on the assessment of older
adults with delirium. Evidence-based screening and assessment
guidelines in oncology and palliative care settings will improve
delirium care in this patient population.
DEMENTIA
Dementia is a progressive cognitive decline characterized by
impairment in cognitive functioning (e.g., memory, language,
executive functioning, visuospatial skills) that interferes with the
ability to perform activities of daily functioning independently. It
is estimated that dementia affects between 2.4million to 5.5mil-
lion people in the United States.11 Cancer patients with cogni-
tive impairment are at increased risk of functional dependence
and medication non-adherence, and are at greater risk of death.
Cognitive and functional assessment for mild cognitive impair-
ment and dementia is recommended for all older adults with
cancer. The NCCN Senior Adult Oncology Guidelines (NCCN
2014)recommend that all cognitively impaired patients be cared
for by a multidisciplinary geriatric oncology team throughout
their treatment. For patients with suspected impaired cognitive
function, or for patients with self-reported or family-reported
concerns for cognitive impairment, a consultation with a cogni-
tive disorders specialist is recommended. The NCCN guidelines
recommend periodic reassessment of cognitive functioning for
those with cognitive impairment and for all older adults when
considering changes to treatment plan. In this section we will
provide a review of screening and assessment for dementia syn-
dromes and a brief overview of different cognitive syndromes.
Dementia:Screening and Assessment
The initial assessment of an individual suspected of having any
cognitive impairment starts with a detailed history with input
from a family member or caregiver who could provide informa-
tion on the patients previous level of functioning, the temporal
course and rate of cognitive decline, and any behavioral or func-
tional changes noted along with cognitive impairment. The time
course and associated symptoms represent the key information in
distinguishing between different forms of cognitive disorders and
ruling out depression or delirium. For neurocognitive disorders
such as dementia, the onset of symptoms is gradual and progres-
sive as opposed to the abrupt and rapid onset usually seen in delir-
ium.3 As part of the initial assessment, there should be a review
of the patients baseline and current ability to carry out his or her
independent activities of daily living (IADL). IADLs include use
of the telephone, shopping, food preparation, housekeeping, laun-
dry, grooming, mode of transportation, responsibility for medica-
tions, and handling of finances. It is important to find out to what
degree the impairment is secondary to physical impairments, as
opposed to a cognitive impairment. Asking a caregiver if he or she
has concerns for the patients safety can also provide key informa-
tion regarding the level of impairment.
The history should additionally include exposure to risk factors
associated with cognitive impairment, such as history of alcohol
or illicit substance use, as well as exposure to toxins. Athorough
review of a patients medications, including use of supplements
and over-the-counter drugs, must be completed. Opioids, ben-
zodiazepines, and anti-cholinergic medications are often associ-
ated with cognitive impairment in vulnerable patients. Cancer
type and cancer-related treatments received by the patient should
be reviewed as potential contributors to cognitive impairment.
Chemotherapeutic agents, radiation, and hormone therapies have
all been associated with cognitive changes (see Chapter 50).12
Clinicians should inquire about history of chronic medical condi-
tions such as hypertension, vascular disease, hyperlipidemia, dia-
betes mellitus, and obesity, as they have all been shown to increase
the risk of cognitive impairment. Ahistory of psychiatric illnesses
should also be reviewed. Patients with major depressive disor-
der can often present with mild forgetfulness, previously termed
pseudo-dementia. Feelings of sadness, dysphoria, hopelessness,
helplessness, anhedonia, lack of motivation, appetite disturbance,
sleep disturbance, and suicidality are supportive of a diagnosis of
depression, as opposed to dementia or other cognitive syndromes.
In depressed patients, the cognitive impairments tend to be mild
and would have not been present prior to the onset of depression.
During cognitive testing the depressed patient often responds, I
dont know. Indifference to cognitive deficits is common among
depressed patients, and is not usually seen in patients with a
neurocognitive disorder, who tend to express distress over their
cognitive deficits. Fatigue secondary to cancer and cancer-related
treatments is commonly encountered among cancer patients and
may contribute to cognitive dysfunction. Patients suffering from
severe fatigue could appear inattentive, sedated, and can present
with short-term memory impairments. Once the fatigue is man-
aged properly, cognitive deficits should resolve.
A comprehensive physical examination with emphasis on neu-
rological signs should be performed. The presence of asterixis and
frontal release signs like a palmo-mental reflex or grasp reflex may
be observed in cases of delirium or advanced dementia. Ataxia
and focal motor or sensory findings may be present in dementia,
especially in the presence of brain lesions or vitamin deficiencies.
Laboratory testing, including a urinalysis, basic metabolic panel,
lipid profile, liver function tests, thyroid function tests, syphilis
screen, HIV test, paraneoplastic panel, vitamin levels including
vitamin B12, thiamine and folate, and cerebrospinal fluid are useful
in identifying reversible causes of the cognitive changes if clinically
indicated. Neuroimaging, such as a computed tomography (CT)
scan or magnetic resonance imaging (MRI), is needed to evalu-
ate for potential structural causes of the impairment. Information
 Chapter49 delirium and dementia 401

obtained through history and physical examination should guide
clinicians as to the extent of laboratory testing and neuroimaging.
An important component of the evaluation is the objective
assessment of an individuals cognitive abilities. This can be per-
formed in the office or at bedside with the use of a cognitive assess-
ment tool (see Table 49.2). Assessment tools, such as the Montreal
Cognitive Assessment (MoCA)13 and the Mini-Mental Status
Exam (MMSE),14 are designed to test multiple domains of cogni-
tion, including short-term memory, language, generative naming,
visuospatial skills, and executive functioning. The NCCN Senior
Adult Oncology Guidelines have included Mini-Cog as a screen-
ing tool for cognitive impairment in older adults with cancer.15
Cognitive tests can provide a sense of how severe the impairment
is and can assist in making a diagnosis. Repeated administration
of the same cognitive assessment tool at different time points is
important in tracking improvements or the rate of further decline
in cognition. Comprehensive neuropsychological testing may be
required in most patients with cancer to differentiate between
cancer and cancer-related cognitive changes, neurodegenerative
diseases, and vascular and other forms of cognitive syndromes
(see Chapter50).16,17
COMMON COGNITIVE SYNDROMES
In this section we will review other commonly encountered cog-
nitive syndromes in oncology settings, particularly among older
adults, the age group most commonly affected by cancer.
Dementia Due to Alzheimers Disease
Alzheimers disease is the most common form of dementia. The
most significant risk factor for Alzheimers disease is age. The
incidence of the disease doubles every five years after age 65.18,19
In Alzheimers disease the cognitive and behavioral symptoms
typically have an insidious onset and gradual progression. Early
in the course the predominant feature is memory loss. Patients
typically preserve social cognition and procedural memory until
very late. Deficits in language, visuospatial impairments, and
executive function are typically seen as the disease progresses.
Non-cognitive neuropsychiatric disturbances, including apathy,
irritability, agitation, restlessness, anxiety, and depression, are
commonly seen in patients with Alzheimers disease. Patients
with advanced Alzheimers dementia can present with aggression
and psychosis.3
The brain pathology in Alzheimers is characterized by neu-
ronal loss and an accumulation of misfolded proteins, known as
neurofibrillary tangles and amyloid plaques.18 Genetic predispo-
sition has been identified in early onset cases, and commercial
testing for mutations of the known Alzheimers disease genes,
such as amyloid precursor protein (APP), presenilin 1 (PSEN1) or
presenilin 2 (PSEN 2), is available. The use of positron emission
tomography (PET) scans to detect amyloid plaque density and
testing of cerebrospinal fluid for amyloid and tau levels may be
useful in diagnosing cases of Alzheimers when the clinical pic-
ture is unclear.3
Vascular Dementia
Vascular dementia is the second most common form of demen-
tia seen in older adults. In patients with vascular dementia, the
onset of cognitive symptoms typically coincides with cerebrovas-
cular events. The cognitive decline is especially seen in areas of
executive function and working memory. Neuroimaging is help-
ful in identifying the presence of cerebrovascular disease, which
can range from large strokes to small vessel disease. The cognitive
impairments usually occur in a stepwise fashion, with periods

Table49.2 Overview of Commonly Used Clinician-Rated Dementia Screening and Assessment Scales

MMSE 14 MINICOG 15 MOCA13 SLUMS 23 Freund Clock Drawing

Test 24
Domains tested Orientation, attention, Memory, language Orientation, memory, Orientation, memory, Memory, executive
comprehension, comprehension, clock, visuospatial animal fluency, attention, function, visuospatial ability
calculations, memory, visual-motor skills, ability, fluency, language, clock drawing
language, visuospatial executivefunction abstraction, calculations,
ability executive function,
attention
Advantages One of the most Not strongly influenced Better testing of Emphasizes memory Not influenced by
commonly used byeducation executive functioning, tasks,good for education. Seven-point
cognitive assessment more sensitive to mild distinguishin g scoring of the clock draw
tools impairment, freely between mild cognitive allows for improved
available online in a impairmentand inter-rater reliability and
number of different dementia improved identification of
languages cognitive deficits.
Disadvantages Can miss deficits in Scoring of clock drawing Cannot distinguish Less evaluation of Cannot be used in visually
well-educated, limited test is vulnerable to between mild cognitive language, constructions. impaired patients and
executive function different interpretations. impairment and and executive patients with impaired
testing. It is not freely Cannot be used in visually dementia functioning manual dexterity
available. impaired patients and
patients with impaired
manual dexterity
Time to administer 1015 min 5 min 1015 min 10 min 5 min
402 Section VIII screening and assessment in psychosocial oncology
of decline followed by periods of stability and eventually further
decline. Symptoms such as mood and personality changes, abulia,
and emotional lability may be seen. Patients often initially present
with depressive symptoms and on further screening are found to
have deficits in executive functioning. The condition is thought to
be secondary to atherosclerosis and arteriosclerosis in the cerebral
vessels. The common risk factors include dyslipidemia, hyperten-
sion, diabetes mellitus, smoking, obesity, and atrial fibrillation, as
well as other conditions that increase the risk of cerebral emboli.
Frontotemporal Dementia
Frontotemporal dementia is the most common cause of early onset
dementia in individuals younger than 65years old. Frontotemporal
dementia is characterized by the gradual and progressive devel-
opment of personality changes, as well as behavioral and/or lan-
guage impairment. The hallmark behavioral changes are apathy
or disinhibition. Patients can lose interest in self-care and social-
ization and can often present with socially inappropriate behav-
iors. These patients are sometimes noted to be hyper-oral, and
changes in their diet can be observed. Patients who develop per-
sonality changes can have changes in their social style and beliefs.
Cognitive deficits are less prominent in frontotemporal demen-
tia; when present, most commonly these patients have difficulties
with planning and organizing. They can demonstrate poor judg-
ment and are easily distracted. Cognitive testing frequently shows
impairments in abstract reasoning, response inhibition, and men-
tal flexibility. Learning, memory, and perceptual-motor abilities
tend to be spared, especially in early stages. Neuroimaging will
reveal a distinct pattern of atrophy of the frontal lobes.
Lewy Body Dementia
Lewy body dementia is the second most common type of neurode-
generative dementia after Alzheimers disease. Lewy body demen-
tia is associated with an insidious onset and gradual progression
of cognitive decline. The condition can present with fluctuating
cognition with pronounced variations in attention and alert-
ness, recurrent visual hallucinations that are often well formed
and detailed, and features of parkinsonism that appear after the
cognitive decline. Patients with Lewy body dementia are prone to
frequent falls, syncope, and autonomic dysfunction. They tend to
be very sensitive to treatment with antipsychotics. Antipsychotics
should be avoided at best in patients with Lewy body dementia.
The arousal disturbance in these patients can appear similar to
delirium, but the course of the decline is gradual, as opposed
to an acute onset. Further medical workup does not reveal any
underlying medical etiologies in patients with Lewy body demen-
tia unless they have superimposed delirium. These patients will
often have a history of episodes of delirium, prior to developing
the disorder. The disease is caused by misfolded proteins, specifi-
cally alpha-synuclein, and is referred to as a synucleinopathy.
Dementia Due to Vitamin Deficiencies
Vitamins such as cyanocobalamin (B12), thiamine (B1), and folate
are essential for normal functioning of the brain and nervous
system. These vitamins are essential to cell metabolism, DNA
synthesis, and energy production. When deficient in any of these
vitamins, one can develop a myriad of neurologic impairments,
including dementia. If given a history of a patient with cogni-
tive deficits and poor nutritional status, persistent nausea and
vomiting, or altered gastrointestinal absorption, as seen in gastric
cancer or after bariatric surgery, one should consider a demen-
tia due to vitamin deficiency. Early recognition of such cases is
important because the cognitive impairments may be reversed
with repletion of the vitamin. Gait disturbances, neuropathy,
anemia, weakness, cognitive impairment, depression, and a red
beefy tongue are some of the characteristic findings of patients
with dementia due to vitamin B12 deficiency. Patients with folate
deficiency may also present with mood disturbance, cognitive
impairment, and anemia. Thiamine deficient patients can develop
Wernickes encephalopathy, a condition characterized by mental
status changes, gait disturbance, and ophthalmoplegia. Wernickes
encephalopathy has long been thought of as a condition limited
to patients with alcoholism; however, recent literature has shown
that the syndrome can be seen in those with poor nutrition. Frail
patients with a malignancy, who often suffer from low appetite
and vomiting, may be especially vulnerable.20 Screening for defi-
ciencies can be easily achieved by ordering blood vitamin levels,
and repletion can be done by vitamin supplementation.
Dementia Due to HIV Infection
HIV disease is an infection caused by exposure to the human
immunodeficiency virus type I.The route of transmission is con-
tact with infected bodily fluids. The virus, once contracted, impairs
functioning of CD-4 lymphocytes, cells crucial to a functioning
immune system. The virus can affect a variety of brain regions,
resulting in the development of cognitive impairment. Typically
the affected individual can present with deficits in executive func-
tioning, processing speed, attention; in severe cases, language,
emotional control, and affect may be affected. Other neurologic
impairments may also be present in severe cases, including inco-
ordination, ataxia, and motor slowing. Dementia due to HIV
is more commonly seen in patients with high viral load mea-
sured in the cerebrospinal fluid or those who have other signs of
advanced HIV. The course of cognitive impairment can vary from
rapid progression to slow decline to improvement or even resolu-
tion. One would not expect to observe an abrupt onset of men-
tal status changes, which would more likely indicate a delirium,
requiring a comprehensive workup to identify potential medical
causes, with special attention to ruling out the presence of an
opportunistic infection. It is important to note that HIV-infected
patients s uffer from cognitive impairments even in the absence of
full-blown AIDS.
Mild Cognitive Impairment
Mild cognitive impairment is a condition defined as a modest
cognitive decline from an individuals previous level of func-
tioning, greater than expected for age and education level. The
impairment does not affect ones ability to sustain independence
in activities of daily living, but the individual likely experiences
a need for greater effort, accommodation, or strategies for cop-
ing with the deficit when managing complex tasks. Mild cogni-
tive impairment is typically seen in adults over the age 65, with
a prevalence ranging from 3% to 19% of the population in that
age group. 21 Many patients with mild cognitive impairment
will progress to developing dementia, and therefore they should
be monitored closely. Factors like prolonged exposure to anti-
cholinergic medications, cerebrovascular disease, mis-folded
protein deposition, and genetic mutation have been identified

as potentially playing a role in the pathophysiology of the syn-
drome.21 Patients presenting with mild cognitive impairment may
develop an Alzheimers dementia, a Lewy body dementia, or other
types of cognitive syndromes depending on the underlying etiol-
ogy. Patients with mild cognitive impairment secondary to cancer
and cancer treatment-related cognitive changes may not progress
to a full-blown dementia. This continues to be an area in need for
further study among cancer patients (see Chapter50).
The cognitive dysfunction in patients with mild cognitive impair-
ment may not be apparent in a casual conversation. Typically, those
close to the patient describe the individual as now being forgetful of
things they once recalled easily or of recent events that they would
normally be interested in. Cognitive assessment tools, identical to
those used in screening for dementia, can be used for diagnosing
mild cognitive impairment, but these often lack the sensitivity to
identify such subtle impairments. Comprehensive neuropsycho-
logical testing is mostly required to uncover the problem. Screening
and diagnosing mild cognitive impairment are important, as this
will help identify individuals potentially at risk of developing more
severe impairment in the coming years. This can allow individu-
als, families, and healthcare providers an opportunity to plan more
effectively for future treatments.
Recommendations for Future Research on Screening
and Assessment of Dementia in Oncology Settings
In 2013, a systematic review for the US Preventive Services Task
Force (USPSTF) concluded that brief instruments to screen
for cognitive impairment could adequately detect for demen-
tia; however, there was no empirical evidence that screening for
cognitive impairment improved decision-making or impor-
tant patient, caregiver, or societal outcomes.11 It is important to
note that the USPSTF review findings are applicable to healthy,
community-dwelling older adults, and these findings highlight
the need to improve research on outcomes and interventions for
the cognitive impaired. In oncology settings, medical comor-
bidities, cancer and cancer treatments, comorbid depression, and
increased prevalence of delirium predispose patients to cognitive
deficits. Therefore, current guidelines recommend screening for
cognitive impairment among older adults with cancer. Although
older adults are at higher risk for cognitive impairment, adults
with cancer are more likely to experience cognitive impairment
than those without a cancer diagnosis. Therefore screening for
cognitive impairment among all patients with a cancer diagnosis
should be considered. Future research should focus on identifying
risk factors for cognitive impairment, how to best screen for cog-
nitive impairment, studying morbidity and mortality outcomes
of cognitive impairment, and clarifying the impact of cancer and
cancer related-treatments on cognition among cancer patients of
all age groups.
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Comparison of the Saint Louis University mental status examination
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24. Lycke M, Ketelaars L, Boterberg T, Pottel L, Pottel H, Vergauwe P,
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Bruera ED. Clinical utility, factor analysis, and further validation of
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15;88(12):28592867.
 CHAPTER50
Screening and Assessment
for Cognitive Problems
James C.Root, Elizabeth Ryan, and Tim A.Ahles
INTRODUCTION
Cognitive dysfunction associated with cancer and cancer treat-
ment has been increasingly recognized and reported by patients.
In breast cancer survivors, the most widely investigated can-
cer cohort, cognitive dysfunction is experienced in 17%75%
of women, at time points between six months to 20years after
completion of treatment.1-3 A majority of longitudinal studies
utilizing objective cognitive assessments have found significant
changes from pre- to post-treatment.4 Interestingly, in two stud-
ies, cognitive dysfunction was found prior to adjuvant therapy
in 20%30% of patients diagnosed with breast cancer.5,6 Due to
this research and the increasing awareness of potential cognitive
difficulties by patients, objective measures of cognitive function-
ing that can detect subtle declines in function are necessary. This
chapter focuses on the relative utility of brief and more exten-
sive objective cognitive measures to detect cancer-associated
cognitive dysfunction (CACD) in survivors. We will first discuss
brief cognitive screening measures and their utility in detecting
dysfunction, and then move on to more comprehensive neuro-
psychological assessment measures and their use in cancer sur-
vivors. The sensitivity and specificity of these measures in the
detection of CACD, as well as their effect on patient outcomes,
will be discussed.
OVERVIEW OF SCREENING MEASURES
A wealth of screening instruments has been developed for the
detection of cognitive difficulties and impairment in general,
as well as in a wide range of specific neurological syndromes.7
Screening measures have the advantage generally of being rela-
tively brief, while at the same time sampling from multiple cog-
nitive domains. As a result, these measures have been suggested
as a first-line evaluation of potential cognitive impairment
preceding or in parallel with comprehensive neuropsychologi-
cal assessment. A significant drawback to the use of cognitive
screening measures in cancer survivors is in the limited sensi-
tivity of these measures to mild cognitive dysfunction, which
may be more typical in this cohort. Most screening measures
were developed for the detection of moderate to severe cogni-
tive impairment, like that seen in traumatic brain injury and
degenerative dementing conditions. In contrast, the mild cog-
nitive difficulties that are sometimes exhibited following cancer
treatment will often remain undetected when cognitive screen-
ing measures are used. Arelated drawback to the use of screen-
ing measures lies in the fact that results are generally interpreted
categorically in reference to a threshold score, that is, cognitively
impaired or intact, rather than on a continuum of ability, that
is, in relation to an individuals relative position on a normal
distribution. As a result, even meaningful decline in a can-
cer survivor from the high average to average range of ability
would be classified as intact when based solely on the results of
a cognitive screening measure. Afurther complication in using
cognitive screening measures in the detection of subtle cogni-
tive dysfunction is the likely ceiling effect that will be exhibited
across most screening instruments, particularly in previously
high-functioning individuals.
These issues notwithstanding, cognitive screening measures
may be useful in the early stages of evaluation of cognitive dif-
ficulties in cancer survivors when interpreted cautiously and
when the limitations and relative insensitivity to subtle cogni-
tive decline are kept in mind. The choice of cognitive screening
measure should be guided by the expected severity of cognitive
decline, as well as the potential etiology of cognitive difficulties.
They will be particularly useful in cases in which significant
cognitive dysfunction is suspected, as in specific neurological
syndromes and dementing disorders in later life. They will be
less useful in cases of subtle cognitive dysfunction, as in CACD.
To date, no screening measure has been developed and tested
specifically for the detection of treatment-associated cognitive
difficulties following cancer treatment. As a result, we focus
on the sensitivity and specificity of these measures in detect-
ing dementing conditions as well as mild cognitive impairment
(MCI), with the caveat that cancer-associated cognitive dysfunc-
tion is far less severe than dementia and likely less severe in mild
cognitive impairment in the majority of cases. For this review,
four common cognitive screening measures are discussed.
The Mini-Mental State Exam and the Mini-Cog were devel-
oped to detect relatively frank and severe dysfunction, while
the Montreal Cognitive Assessment and the High Sensitivity
Cognitive Screen were developed to detect relatively milder or
subtler cognitive dysfunction.
406 Section VIII screening and assessment in psychosocial oncology
Mini-Mental State Exam
The Mini-Mental State Exam (2nd edition; MMSE-2) is a brief
(1015 minutes) 30-item measure that assesses orientation to time
and place, registration, language function, short-term memory,
working memory, and construction.8 Significant improvements
have been made with the second edition, including age and edu-
cation corrections. Traditionally, a cut-score of 24, but as high
as 26, has been used on the MMSE to suggest a greater prob-
ability of cognitive impairment. Sensitivity and specificity vary,
depending on age, ethnicity, and education, as well as disease. In
a meta-analysis of 34 dementia studies, the MMSE exhibited sen-
sitivity and specificity of 80% and 81%, respectively.9 Significantly,
in a sample of highly educated, primarily Caucasian individuals
using the original MMSE, a cut score of 26 or below yielded a bal-
ance of sensitivity and specificity of 89% and 91%, respectively,
indicating that demographic factors can be expected to alter clini-
cal interpretation of MMSE performance.10 In identifying cases
of mild cognitive impairment (MCI), either in contrast to healthy
subjects or to Alzheimers dementia (AD), the MMSE has been
found to perform poorly.9 Given that treatment-related cognitive
effects are expected to be of far less severity than in either MCI or
frank dementia, the MMSE-2 is unlikely to be of clinical utility in
assessing for CACD. Studies that have administered the MMSE
in research protocols evaluating the effects of cancer treatment
on cognitive function do so to either screen for baseline cogni-
tive impairment for exclusion purposes or as a primary outcome
measure.1115 Of these, only one study found any significant effect
of group status on MMSE performance,15 although given that all
subjects were over the age of 65, the effects of age on performance,
rather than the effect of cancer treatment, cannot be ruled out.
Mini-Cog
The Mini-Cog16 combines a three-word recall task with the
Clock Drawing Test (CDT) and has seen increasing use in pre-
operative and inpatient evaluations due to its brevity (3 minutes)
and sensitivity to moderate and severe dysfunction. In a large,
population-based study, the Mini-Cog exhibited sensitivity and
specificity values of 76% and 89%, respectively, for detection of
dementia, and performed as well as the MMSE (79% and 88%).
Aside from the shorter administration time than the MMSE, the
Mini-Cog has also been found to be less affected by the education,
ethnicity, and language characteristics of the patient.17 In detec-
tion of mild cognitive impairment in a sample with dementia and
a relatively greater number of individuals classified as cognitive
impairmentno dementia (CIND), the Mini-Cog performed sim-
ilarly to previous studies in identifying dementia (sensitivity:76%;
specificity:73%) but poorly in detecting either dementia or CIND
(sensitivity:39%; specificity:78%), indicating lesser accuracy in
the identification of milder cognitive dysfunction. To our knowl-
edge, the Mini-Cog has not been used for the detection of cogni-
tive dysfunction in cancer survivors previously, but initial results
in the detection of mild cognitive dysfunction suggest that this
measure will lack sensitivity in this cohort.
Montreal Cognitive Assessment
The Montreal Cognitive Assessment (MoCA) was developed as a
brief (10 minutes; 30 items) screening measure for mild cognitive
impairment (MCI). In a validation study of the MoCA on MCI,
AD, and healthy control subjects, the MoCA out-performed the
MMSE in discriminating MCI,18 with sensitivity and specificity
values for the MoCA of 90% and 87%, respectively, in contrast to
MMSE sensitivity and specificity values of 81% and 100%, respec-
tively. Greater sensitivity of the MoCA over the MMSE has been
found in subsequent studies as well,1921 both in regard to better
sensitivity and specificity, as well as in identifying domain-specific
cognitive dysfunction missed by the MMSE. While the MoCA
is sensitive to subtler cognitive dysfunction, it is still likely that
treatment-related cognitive effects will be of lesser magnitude in
cancer survivors. With regard to MoCA performance in cancer
patients, one case series22 found abnormal MoCA performance
in a 75-year-old man on active treatment for non-small cell lung
cancer, with return to normal MoCA performance once treatment
was completed. In the same series, a 65-year-old woman treated
for breast cancer with adjuvant chemotherapy three years prior,
who was on exemestane at the time of administration, performed
in the abnormal range on the MoCA, with normal range perfor-
mance at one-year follow-up. The potential influence of practice
effects and patient age that may better explain cognitive perfor-
mance was not addressed. In a feasibility study23 designed to test
the efficacy and feasibility of the MoCA in cancer survivors, 14/38
survivors scored below the cut-score for the MoCA, although no
control group was studied to compare rate of dysfunction. In a
large, sample-based study24 that included breast cancer survi-
vors treated with or without chemotherapy and a healthy control
group, no difference in MoCA performance was found.
High Sensitivity Cognitive Screen
The High Sensitivity Cognitive Screen (HSCS) is a longer (2030
minutes) cognitive screening measure that tests executive func-
tioning, visuospatial ability, psychomotor speed, attention and
concentration, language, and memory.25 Rather than a discrete
cut-score, the HSCS classifies individuals into one of five catego-
ries:normal, borderline, mild, moderate, and severe. The screen
was designed to be sensitive to subtle cognitive dysfunction and
has been used in previous studies investigating cognitive effects of
cancer treatments. The HSCS has demonstrated strong diagnostic
accuracy and agreement with comprehensive neuropsychological
assessment with 93% accuracy in non-cancer samples. In cancer
samples using the HSCS, Brezden etal.26 found a significant dif-
ference between breast cancer patients on active chemotherapy
treatment and healthy controls, but not when compared with
breast cancer survivors with a past history of chemotherapy treat-
ment. Tchen etal.14 administered the HSCS to women on active
chemotherapy treatment for breast cancer and healthy controls
and found a 16% rate of moderate to severe impairment in the
active treatment group compared to only 4% moderate to severe
impairment in the healthy control group. Asecond study by the
same group,27 which followed the same patients and controls over
one- and two year time-points, found 4.4% and 3.8% of patients
with moderate to severe dysfunction as compared to 3.6% and
0% in the healthy control group. Downie et al.28 administered
the HSCS to a single group of breast cancer diagnosed women on
active chemotherapy treatment and compared objective results
to subjective, self-reported cognitive dysfunction. Difficulties
with language abilities (61%) and memory (48%) were found
using the HSCS, although these rates were lower than would be
expected given patient self-report (78% and 95%, respectively);

the most significant discrepancy between objective and subjec-
tive measures was found in attention abilities (10% objective ver-
sus 90% subjective). Vardy etal.29 administered the HSCS over
three time-points (mean interval=17) to a group predominantly
composed of breast cancer survivors (94%) within two years of
completion of treatment. While 30% of patients (6/20) exhibited
moderate to severe cognitive impairment at baseline, significant
putative practice effects reduced this rate to 5% (1/19) at time 2,
and this rate remained at time 3 (1/18).
REVIEW OF RESEARCH:SCREENING
MEASURES
Does screening for cognitive impairment in cancer patients lead to
better outcomes? Of the screening instruments used, the MMSE
does not appear to provide additional information. Yamada
etal. (2010) used the MMSE with older breast cancer survivors
> 10years post-treatment to examine brief global cognitive func-
tioning and found lower MMSE scores in the cancer survivors;
however, their scores (mean=27.6; SD=2.1) were still above the ture and clinical experience. Four early meta-analyses reported
MMSE cutoff. Thus, a clinician would not typically refer them
for further assessment. Complicating the interpretation of this
result is the age of the sample (65 and older). The significant dif-
ference between the breast cancer survivors and the controls was
1.7 points on average, which is not likely to result in a clinically
meaningful difference. As reviewed above, the MoCA exhibited a
return to normal performance following treatment in single case
studies, and, in a sample of breast cancer survivors, revealed no
difference in performance between groups.24 The HSCS has been
used in several studies14,2730 assessing the cognitive effects of
cancer treatments. Although the HSCS has demonstrated strong
diagnostic accuracy and agreement with comprehensive neu-
ropsychological assessment, studies in cancer survivors suggest
inconsistent sensitivity; further limitations include longer admin-
istration times (2030 minutes), and potentially significant prac-
tice effects in cases in which serial assessments may be indicated.
Due to insensitivity to subtle cognitive dysfunction and the limi-
tations of screening instruments, comprehensive neuropsycholog-
ical assessment remains the gold standard in assessing CACD.
We now turn to describing the comprehensive neuropsychological
assessment process and specific recommendations for the assess-
ment of CACD.
OVERVIEW OF COMPREHENSIVE
NEUROPSYCHOLOGICAL ASSESSMENT
The neuropsychological assessment begins with a diagnostic
interview that determines the patients main cognitive com-
plaints, cancer treatments, medical, neurological, psychiatric,
psychosocial, substance use, and educational/vocational history,
all of which will help to contextualize the results of the neuro-
psychological assessment. If a neuropsychological assessment is
considered appropriate, formal testing is recommended, which
will vary in terms of time and measures administered, depend-
ing on patient characteristics and referral question; time for an
assessment may range from one to several hours depending on
patient-specific factors.
A flexible approach to test selection allows the clinician to tai-
lor the assessment to the specific referral question; while most
Chapter50 cognitive problems 407
practitioners will employ a somewhat standard core battery
of measures, additional measures may be administered for spe-
cific issues or complaints (multitasking, attention/concentration
issues over longer periods of time). Neuropsychological and psy-
chological measures are generally in paper-and-pencil, as well as
interview and computer-administered format, and should have
acceptable validity and reliability. Most batteries, regardless of
syndrome, will attempt to sample cognitive ability in multiple
domains, including attention and concentration, psychomotor
speed, verbal functioning, visuospatial reasoning, praxis and
construction, verbal and visual learning and recall, and executive
functioning (abstraction, reasoning, cognitive flexibility, problem
solving, planning and organization). Depending on the clinician,
measures of personality, emotional, and psychological function-
ing may also be administered as either a standard part of the
assessment or when there is suspicion that a significant psychiatric
issue may be affecting cognition.
Specifically for the assessment of CACD, test selection and
interpretation of results should be guided by empirical litera-
significant effects in multiple domains, including in visual and
verbal memory, but these analyses included either studies with
multiple cancer types and therapies, 31 or studies that measured
cognitive function during active treatment. 3134 The most recent
meta-analysis that included only breast cancer survivors not on
active treatment found cross-sectional and longitudinal effects in
verbal and visuospatial functioning.35 To develop a harmonized
battery of measures for the assessment of CACD, the International
Cognition and Cancer Task Force (ICCTF) brought together two
working groups with experts in cognition and cancer.36 In select-
ing tests, the ICCTF required adequate psychometric properties,
test-retest reliability, suitability for multinational application, as
well as the availability of alternate test forms (in order to elimi-
nate practice effects in serial testing). Other criteria considered
were the frequent use of the test in a specific area of research being
investigated and the use of the test by other cooperative groups.
Since previous studies revealed a frontal subcortical pattern, rec-
ommended domains included learning and memory, processing
speed, and executive functioning (especially the more complex
aspects of attention). Specific measures included the Hopkins
Verbal Learning Test-Revised (HVLT-R), 37 Trail Making Test
(TMT), 38 and the Controlled Oral Word Association (COWA)39
test of the Multilingual Aphasia Examination. Atest of working
memory (which involves the temporary storage and manipula-
tion of information) was not included in the core battery of rec-
ommended tests because none of the current available measures
metall of the selective criteria outlined by the ICCTF. However, it
is recommended that the core battery be supplemented with a test
of working memory based on the neuropsychologists preference.
We have included a table of measures that we use as part of a flex-
ible battery approach that is guided by the recommendations of
the ICCTF, together with previously published research, as well as
our own clinical experience within the service (Table 50.1).
Following administration of the tests, patient performance on
individual measures is compared to normative groups defined by
age, or, increasingly, age, education, gender, and ethnicity, to ensure
the most exact matching of patients to their respective cohorts. In
contrast to a deficit testing model of assessment, in which perfor-
mance is categorized as either normal or aberrant, comparison of
408 Section VIII screening and assessment in psychosocial oncology

Table50.1 List of Commonly Used Neuropsychological Measures in the Assessment of Post-Treatment Cognitive Dysfunction

Measure
Premorbid Intelligence
Test of Premorbid Functioning (TOPF)
Verbal Ability
FAS-Controlled Oral Word Association Test
Animal Naming Test
Boston Naming Test
Learning and Memory
California Verbal Learning Test II (CVLT-II)
Logical Memory Iand II (WMS-IV)
Rey-Osterreith Complex Figure
Attention
Digit Span (WAIS-IV)
Arithmetic (WAIS-IV)
Continuous Performance Test (CPT)
Processing Speed
The Trail Making Test (Part A)
The Trail Making Test (Part B)
Digit SymbolCoding (WAIS-IV)
Symbol Search (WAIS-IV)
Visual Reasoning/Construction
Rey-Osterreith Complex Figure
Judgment of Line Orientation
Block Design (WAIS-IV)
Executive Functioning
Wisconsin Card Sorting Task (WCST)
Stroop
Psychological/Emotional
Personality Assessment Inventory (PAI)
Beck Depression Inventory (BDI)
State Trait Anxiety Inventory (STAI)
Function
A measure estimating premorbid cognitive abilities, highly correlated with
general intellectual abilities
A timed measure of phonemic fluency
A timed measure of semantic fluency
A measure of confrontation naming (word finding)
A measure of verbal list learning allowing and recall
A measure of verbal story learning and recall
A measure of visual figure learning and memory
A measure of brief span of attention
A measure of brief span of attention and working memory
A measure of sustained attention
A speeded graphomotor measure and visual scanning
A speeded graphomotor measure, visual scanning, and set-shifting
A speeded graphomotor measure
A speeded measure of visual scanning attention
A measure of visual construction
A measure of visuospatial judgment and reasoning
A timed measure of visual construction and reasoning
A measure of abstract reasoning and problem-solving
A measure of word reading, color naming, and inhibition
A self-report measure of psychological functioning
A self-report measure of depressive symptomatology
A self-report measure of anxiety symptomatology

patients performance to normative groups, and to their own pre-
morbid functioning, allows for finer gradations of interpretation;
test results can indicate how well, or how poorly, an individual
patient performs on a given task, and also allows for detection not
only of absolute deficits, but also of deficits that are relative to the
patients normative cohort or to their own premorbid functioning.
USES OF SCREENING AND ASSESSMENT
What is the best approach to assessing the presence of CACD?
Deciding whether to administer a screening instrument or a flex-
ible neuropsychological assessment depends on the time allotted,
the patients condition (i.e., fatigue), and the nature of the patients
complaints (i.e., does his or her presentation or the caregivers
report resemble an incipient dementia, or are the complaints more
subtle?). The limitations of screening instruments have been thor-
oughly outlined. A flexible neuropsychological assessment can
be tailored to the patients individual reported difficulties and
can be shortened or given over multiple appointments (in the
case of a fatigued patient). We advocate a flexible, comprehensive
neuropsychological assessment for patients with CACD because
included measures exhibit higher sensitivity and specificity and
typically have better normative data, which will ultimately yield
superior information regarding the presence or absence of CACD.

For a suspected dementia, depending on the complaints and the
level of impairment (cognitive and functional), a screening instru-
ment may be appropriate, sparing the patients time and reducing
the distress associated with poor performance over a more exten-
sive battery. CACD has been established as a lingering phenome-
non for some non-CNS cancer survivors over the past two decades
through multiple research studies with increasing methodological
scientific rigor. Strong interest remains in identifying screening
instruments with sufficient sensitivity and specificity to identify
patients who present with suspected CACD. We recommend that
one focus of future research should be on the development of more
accurate screening measures for CACD.
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 CHAPTER51
Cross-Cultural Considerations
in Screening and Assessment
Luigi Grassi, Maria Giulia Nanni,
KristineA.Donovan, and Paul B.Jacobsen
INTRODUCTION
The recognition and management of the psychological and social
needs of cancer patients, as evidenced by the integration of the psy-
chosocial domain into routine cancer care and the promotion of
evidence-based psychosocial care for cancer patients, is one of the
major achievements of psycho-oncology.1,2 However, in a rapidly
changing world, with immigration phenomena that make many
countries multiethnic and multicultural, it is extremely impor-
tant to consider the specific needs determined by cultural and
cross-cultural variables. In the last 30years, attention has focused
on the implications of cultural diversity in clinical settings, par-
ticularly for racial and ethnic minorities, for whom health dispari-
ties are related to socioeconomic disadvantage or the difficulty of
integrating their cultural model into the dominant model.3
In oncology, culture may influence not only the provision of psy-
chosocial care but the doctor-patient relationship (e.g., disclosure
of information related to diagnosis and prognosis, role of patient
and family in decision-making). Culture may also influence a
patients coping mechanisms, including psychological response to
a cancer diagnosis, the presence or absence of psychopathological
disorders (e.g. anxiety or depression, abnormal illness behavior,
somatization), the awareness and knowledge of treatment options,
and the acceptance of psychological interventions.4
The development of the International Federation of Psychosocial
Oncology Societies and other groups has promoted exchanges
among countries and their relative cultures to understand and
appreciate the ways in which different healthcare systems apply
the model of psychosocial oncology, including the evaluation
of psychosocial issues in cancer patients and the provision of
proper interventions. 5 These exchanges have had a significant
effect by highlighting the need for culturally relevant adapta-
tions to be included in the international core curriculum in
psycho-oncology. The psychosocial principles and core constructs
utilized in the curriculum have been translated into nine differ-
ent languages. This highlights the notion that dealing with issues
related to communication in cancer care, distress management,
use of assessment tools, diagnosis and treatment of anxiety and
depression, family variables, ethical and bio-ethical issues,
psychological intervention, grief and bereavement, and palliative
care is, in fact, not possible without considering cross-cultural
aspects.6 Regarding screening and assessment, for example, the
development of guidelines for psychosocial care in oncology has
highlighted the need to consider their application in different cul-
tures. In the United States, the National Comprehensive Cancer
Network (NCCN) established a multidisciplinary team to develop
practical guidelines for routinely screening, assessing, and man-
aging distress (i.e., the psychological, social, and spiritual aspects
and experiences of a cancerdiagnosis) in cancer patients. These
guidelines are today one of the most significant points of refer-
ence in psychosocial oncology.7 Although the authors may not
have anticipated the potential utility of these guidelines in other
cultures, the NCCN guidelines have been translated, adapted, and
applied in a number of different countries and cultures. With that
being the case, any updates to these guidelines would ideally now
take into account the specific needs of different health care sys-
tems, and relative cultures, in the different countries.
In this chapter we will take into consideration some of the issues
related to the importance of culture and cross-cultural variables
in the process of screening for and assessing psychosocial needs
and psychological disorders in cancer patients.
CULTURAL ASPECTS IN PSYCHOSOCIAL
ONCOLOGY:GENERAL ISSUES
Although no consensus exists in the literature on the definitions
of the various terms employed to define sociocultural constructs,
it has been proposed that culture is the shared learned meanings
and behaviors that are transmitted from within a social activity
context for purposes of promoting individual/societal adjust-
ment, growth, and development.8 The integrated patterns (and
their representations) of human behavior, including the language,
thoughts, communications, actions, customs, beliefs, values,
and institutions of racial, ethnic, religious, or social groups, may
have their survival and well-being ensured by sharing mean-
ing, purpose, and means and manners of caring for each other
throughout life. Thus, the sense of life events, including cancer as
a life-threatening stressful event, is strongly influenced by cultural
412 Section VIII screening and assessment in psychosocial oncology
issues. As indicated by Surbone,9 cultural perceptions and reac-
tions to cancer, suffering, and dying, are different in the health-
care systems of different cultures, and these differences influence,
in turn, the provision and effectiveness of cancer care. In fact,
culture molds both the patients and communities trust in oncol-
ogy professionals and institutions, their views of human experi-
mentation, as well as their cognitive, emotional, and behavioral
responses to cancer.
The attitudes toward the concepts of illness and suffering, deci-
sions about treatment, and the entirety of oncology care are framed
by cultural factors that also influence the social structures of the
families with whom clinicians constantly interact when treating
their patients. Although it is said that research on the impact of
cultural issues in oncology is not well-developed, data have accu-
mulated regarding the importance of cultural variables in cancer
care and the specific role of cultural competence in providing
care.10 Cultural (and linguistic) competence is a set of congruent
behaviors, attitudes, and policies among professionals and in a
system or agency, enabling effective work in cross-cultural situa-
tions. Thus, in oncology, competence implies having the capacity
to function effectively as an individual and an organization within
the context of the cultural beliefs, behaviors, and needs presented
by patients and their support system.11
Truth-telling in cancer settings is an example of a culturally
mediated phenomenon that has been largely addressed in many
Western countries, but that is still an area of debate in a num-
ber of non-Western countries. In many cultures, the belief is that
communicating openly about a cancer diagnosis or a prognosis is
unethical because it is perceived as taking away hope and influ-
encing clinical practice. In many cultures, a less than favorable
attitude toward truth-telling would preclude the screening and
assessment of cancer-related problems and distress secondary to
cancer.12 Thus, knowledge of the different cultural values, com-
passion, and cultural sensitivity are extremely important in the
communication process across the cancer trajectory, including
screening and assessment.
The role of cultural factors in influencing coping with cancer has
emerged as an important issue in psychosocial oncology. In a study
of breast cancer survivors of different backgrounds (i.e., African
American, Asian American, Latina, and Caucasian), Ashing-Giwa
etal.13 showed that psychosocial concerns related to worry about
children and burdening the family, body image and sexual health
concerns, beliefs about illness, gender role, and family obligations
(e.g., self-sacrifice), as well as language barriers, were significantly
different among the different cultural groups. In a different study,
researchers demonstrated that immigrant Chinese breast cancer
survivors may express symptoms in culturally unique ways (e.g.,
hot-cold imbalances). They also may be at higher risk for distress
compared with US-born Chinese and non-Hispanic breast cancer
survivors because of cultural norms that influence the tendency to
express ones own needs to physicians or to challenge physicians
when ones own needs are not met.14
These data confirm the need for cultural sensitivity and com-
petence of cancer care providers. It is clear that the creation and
the dissemination of true patient/family-centered care, as has
been repeatedly stressed in the last few years, favor cultural com-
petence. In culturally sensitive patient/family-centered care, the
clinical encounter is grounded in communication, whereby cul-
tural cues (i.e., values and beliefs) of the patient and the clinician
are incorporated within the therapeutic relationship and mutually
shared. It is difficult to separate cultural competence and patient/
family-centered care from health policy-making and sociopoliti-
cal considerations; as such, a global approach (single professional
and cancer care system) to cultural competence in oncology is,
perhaps, the ideal.15 To achieve this, not only should the single
clinician and team be culturally competent, but the entire health
system would need to reflect cultural competence. According to
Anderson etal.,16 a culturally competent healthcare setting should
include a culturally diverse staff that reflects the communities
served, healthcare providers or translators who speak the patients
languages, training for providers about the culture and language
of the people they serve, signage and instructional literature in
the patients languages consistent with their cultural norms, and
culturally specific healthcare settings. Therefore, interventions
to improve cultural competence in healthcare systems are neces-
sary, such as programs to recruit and retain staff members who
reflect the cultural diversity of the community served, the use of
interpreter services or bilingual providers, cultural competency
training for healthcare providers, the use of linguistically and cul-
turally appropriate health education materials, and culturally spe-
cific healthcare settings (e.g., neighborhood clinics for immigrant
populations).23
CULTURAL ISSUES IN SCREENING AND
ASSESSMENT IN CANCER SETTINGS
It is important that psychosocial oncology take into account
cultural factors and the need for a multicultural perspective. In
the practice of screening and assessment, there are a number of
aspects to consider. The first is that the majority of instruments
used in psychosocial oncology were originally developed in the
English language and thus need to be translated into a differ-
ent language. This frequently requires that words and phrases
be adapted in ways that reflect the native culture of the target
language. Translation is not always a straightforward process;
it is always necessary to follow a translation process that avoids
or reduces bias and that minimizes the alterations made in the
language in which the instrument is translated.17 Several trans-
lation procedures are available, including back translation, bilin-
gual technique, committee approach, and pre-test procedure. In
back translation, a target language version is translated back into
the source language version in order to verify translation of the
research instrument. The bilingual technique involves testing
both source and target language versions among bilingual respon-
dents in order to detect items yielding discrepant responses in the
two versions. The committee approach is the use of a team of bilin-
gual people to translate from the source to the target language.
In pre-test procedures, a pilot study should be carried out after
instrument translation is completed in order to ensure that future
users of the target language version can comprehend all questions
and procedures. All of these procedures have advantages and
disadvantages that should be considered in light of the specific
needs at hand (e.g., for research purposes, for screening and/or
assessment in a clinical setting, and for intervention purposes).
Additionally, consensus standards for appropriate translation
processes, adequate reporting about such processes, and focused
preparation are all recommended as a way to enhance the likeli-
hood of high-quality instrument translation.

For psychosocial oncology tools translated from their origi-
nal English version into other languages, it is not uncommon
to have challenges related to the meaning of words, statements,
or concepts. An example is represented by the word distress,
commonly used in the English language as one of several items
of a tool (e.g., MD Anderson Symptom Inventory [MDASI]) or as
a specific tool (e.g., NCCN Distress Thermometer [DT]). In lan-
guages such as French, Italian, and Spanish, the word distress is
not commonly used or is used not at all; this necessitates that the
concept be re-conceptualized in order to be understood. Other
examples are some items of other instruments, such as item 9
of the Hospital Anxiety Depression Scale (HADS) (I get a sort
of frightened feeling like butterflies in the stomach), or item
17 of the Courtauld Emotional Control scale (CECS) (When
Ifeel unhappymiserableI put on a bold face). The meaning the Stoic tradition, represents a way for the person to understand
of these items is not literally translatable in some languages and
should be modified and adapted according to the general con-
cept, which is often related to the cultural background of poten-
tial respondents.
Data are also available regarding the screening and assess-
ment of parameters relative to quality of life, which has extensive
importance in psychosocial oncology. In a systematic review of
nine generic instruments of health-related quality of life (HRQOL)
(e.g., 15D, Dartmouth COOP/WONCA Charts, Euro-Qol, SF-36,
WHO Quality of Life), Bowden and Fox-Rushby18 indicate that
translation guidelines still need to be changed to facilitate more
effective and less biased assessments of equivalence of HRQOL
measures across countries. In fact, problems have emerged in the
translation and adaptation process of the aforesaid instruments in
different languages for different areas of the world, such as Africa,
Asia, Eastern Europe, the Middle East, and South America.
A second aspect is represented by the need to test and validate
the instrument, once translated and adapted, in order to verify if a
new language version performs similarly to the the original instru-
ment. This validation of the translated instrument is important
in ensuring that the results obtained in cross-cultural research or
clinical activity are due to real differences or similarities between
cultures in the phenomena that have been measured.19 The struc-
ture of the instrument may appear different in a translated and
adapted version, since loading of items and relative factors can
vary from the original version. Some inconsistencies in the fac-
tors structure have been reported for several screening and assess-
ment tools, when translated and adapted in languages different
from the original. The HADS, for example, has been shown to
have three factors rather than the usual two-factor structure (i.e.,
anxiety and depression) of the original instrument, with a pos-
sible somatic factor reflecting a somatization tendency among
Chinese people. The analysis of the cross-cultural adaptation of
a screening and assessment instrument specifically devised to
evaluate coping among cancer patients, the Mental Adjustment to
Cancer Scale (MAC) and its shortened version (Mini-MAC), also
gives significant insights into the role of culture. The scales have
shown a different structure in the French, 20 Greek, 21 Italian, 22
and Spanish23 translations and validation studies when translated
from the English, particularly for the dimension of fatalism. This
aspect has not been reported in other countries, such as China, 24
Japan,25 and Taiwan,26 in which, in spite of the different cultural
backgrounds, the MAC and Mini-MAC have shown similar fac-
tors and similar item content.
Chapter51 cross-cultural considerations 413
With respect to fatalism in particular, it is possible that the con-
ceptualization of this specific psychological construct is influenced
according to the country and the culture of reference. For example,
the Southern European Psycho-Oncology Study (SEPO-S), which
evaluated coping styles in a population of cancer patients from
Italy, Portugal, and Spain, found that within the Latin-derived
culture, the concept of fatalism is different from its counterpart
in Anglo-Saxon culture. 27 In fact, while in the latter fatalism is
usually conceived as a resigned and passive (thus dysfunctional)
style associated with psychosocial morbidity, in the former it is
related to active (thus functional) strategies of acceptance asso-
ciated with better psychosocial adjustment. It is also associated,
together with fighting spirit, with spirituality and faith 28 as a part
of a more general framework, in which fatalism, as a component of
what actions are appropriate in the face of suffering. 29
Validation also allows us to determine if a different language
version of a specific instrument has the same cutoff scores for
caseness as the original version; that is, does it have the same
capacity to identify clinically significant problems in coping,
emotional response, and psychological symptoms? This is an
important issue, since for several instruments used in screening
and assessment the studies show a large range of cutoff scores for
distinguishing cases from non-cases in different cultural adapta-
tions of these instruments. Regarding screening for distress and
the use of the Distress Thermometer (DT), a review of the sev-
eral translations of the DT has suggested that, in spite of possible
cultural limitations, the tool has maintained good psychometric
properties across countries and cultures, with values for sensitiv-
ity and specificity, and for positive and negative predictive values,
largely in the typical range, representing good overall accuracy.30
The optimal cutoff score has been found to change by country,
although most studies indicate that a cutoff score of 4 maximizes
sensitivity and specificity for caseness. Other cutoff scores, as low
as 2 and as high as 7, have been reported to identify cases. 34 The
role of cultural factors in this difference is clear for some studies;
for others, the difference depends more on other variables, such
as the characteristics of the patients being screened, the setting,
the stage of cancer, or the criterion of reference (e.g., caseness for
adjustment disorders vs. caseness for major depression).
Within the European Organization for Research and Treatment
of Cancer (EORTC), quality of life and related instruments have
been translated, adapted, and applied in different countries
and cultures. 31 In one study, Aaronson etal.32 showed that the
application of the QLQ-C30 in patients from English-speaking
countries, Northern Europe, and Southern Europe indicated lev-
els of reliability and validity highly consistent across the three
language-cultural groups studied, suggesting its usefulness in
multicultural clinical research settings. Differences in physical
functioning, bodily pain, vitality, social functioning, and qual-
ity of life were found between Portuguese and American can-
cer patients, with the former showing a general better level of
HRQOL. 33 Another multicentric cross-cultural study was car-
ried out by De Haes and Olschewski 34 with breast cancer patients
from 13 countries divided into clusters based on language and
cultural background (Eastern Europe, English-speaking, Finland,
French-speaking, German, and Latin). The authors found differ-
ences in the scores of the Rotterdam Symptom Check-List (RSCL)
among countries and cultures (e.g., high levels of psychological
414 Section VIII screening and assessment in psychosocial oncology
distress among French-speaking patients compared to Eastern
European countries). The level of change of scores on the RSCL
from baseline assessment to three months differed across cul-
tures for psychological distress and global quality of life (e.g.,
higher decrease from the mean score among English-speaking
patients compared to patients in the Latin-cultural cluster, such as
Argentina, Portugal, and Spain). As reported, the study suggests
that multinational studies of screening and assessment instru-
ments may serve to make context-specific values available for
comparison purposes, may improve the instruments themselves,
and may help to develop revised international versions of specific
screening and assessment instruments.
Interesting data have been also reported about cultural differences
regarding style of and preferences for communication. Astudy of
non-Hispanic white and Chinese breast cancer survivors35 pointed
out the cultural differences between patients, with a higher Western
emphasis on individual autonomy among non-Hispanic whites
compared to the Chinese patients emphasis on respect and hierar-
chy. This indicates the need for physicians to shape their approaches
to communication in ways that reflect cultural understanding and
cultural skills. The implications of a culturally competent commu-
nication on patients satisfaction with care are obvious.
A further extremely significant area regards end-of-life care and
grief and bereavement, in which communication issues and char-
acteristics of care are influenced by the patient/family culture.36
Spiritual and religious coping with cancer, customs, rituals, tradi-
tions, and beliefs of the groups to which they belong are also of
foremost importance.37 The cost of cultural incompetence and cul-
tural insensitivity is high in this context, and healthcare providers
and consumers of healthcare need to realize and understand the
potential for bias and miscommunication, in the screening and
assessment phases as well as in delivery of care. 38 With respect
to this, data are available regarding the screening for and assess-
ment of complicated grief using translated and adapted measures
such as the Complicated Grief Inventory. Laurie and Neimayer, 39
for example, found that African Americans reported higher levels
of complicated grief symptoms than Caucasians, especially when
they spent less time speaking to others about their loss experience.
The need for specific conceptual models of the caregiving trajec-
tory and more culturally sensitive strategies for working with
diverse populations of caregivers have also been reported among
different cultural grieving groups, including Chinese, European
Americans, Japanese, and Native Hawaiians.40
A particular aspect concerns the use of qualitative-quantitative
or pure qualitative, rather than pure quantitative, instruments
for assessment purposes. As an example, individualized HRQOL
measures, such as the Patient Generated Index (PGI) and the
Global Person Generated Index (GPGI), were developed to over-
come the difficulty of ensuring that translated measures preserve
conceptual, item, semantic, operational, measurement, and func-
tional equivalence.41 Both the measure and method of qualitative
validation highlight the cultural sensitivity and the ability of such
instruments to capture areas that are important to respondents
and aspects of life that impact HRQOL in different countries,
including developing countries. Qualitative approaches to assess-
ment by definition incorporate ingredients not easily measured by
quantitative research, such as attentiveness, empathy, carefulness,
sensitivity, respect, reflection, conscientiousness, engagement,
awareness, and openness.42
CONCLUSIONS
It is essential to consider the importance of cultural variables in
shaping the individual response to cancer and cancer treatment;
attention to culture is necessary in every phase of the illness tra-
jectory. Therefore, screening and assessment should be integrated
in a more general process that takes into account the patterns and
the representations related to ones own culture, including the
language, thoughts, beliefs, traditions, and values of that specific
country. These aspects should be part of every encounter with can-
cer patients and families who belong to a different culture and for
whom screening and assessment of needs and problems are part
of clinical care. Family function, sex roles, language, disclosure
of disease-related information, pain, attitudes toward illness and
health practices, immigration, religion, autonomy versus depen-
dency, death and bereavement are some of the areas that Die Trill
and Holland43 suggested be considered within a cross-cultural
framework in oncology.
Thus, in the screening and assessment process, but also in the
application of clinical interventions, attention to the nature of the
Box 51.1 Culturally Competent Communication Skills That Can
Be Useful in Multicultural Screening and Assessment
Nonverbal behaviors: reflect the physicians respect, con-
cern, and interest in the patients well-being (active listening,
focusing on the patient, and moderating culturally variable
aspects of the interaction such as eye contact, touch, physical
space, facial expressiveness, and the use of gestures).
Verbal behavior skills:asking about and assessing the patients
problems, showing understanding, acknowledging, reflect-
ing, and calibrating emotions to help form a connection.
Recognition and exploration of potential cultural differ-
ences: evaluation of the patients community and family;
skills and abilities that aid the patient and his or her family
in dealing with the illness; factors that contribute to under-
standing health issues (e.g., education, mental acuity, famil-
iarity with disease); aspects of the patients environment that
influence his or her ability to care for him- or herself (e.g.,
socioeconomic factors, structural environment, stressors);
and emotional implications of illness.
Incorporation of and adaptation to cultural knowledge:inte-
grating a patients cultural values or beliefs into the encoun-
ter; awareness and ability to adapt communication behaviors
to maximize the patients comfort; reconcile misunderstand-
ings; be responsive to the patients values.
Negotiation and collaboration:operating with awareness and
adaptability to negotiate a shared understanding with the
patient; reaching agreement on how the patients symptoms
will be prioritized, diagnosed, and treated; discussing the
meaning of screening and assessment and the risks and ben-
efits of different treatment options in ways that are individu-
alized to the patients sociocultural and biomedical context.
Adapted from Teal CR, Street RL. Critical elements of culturally
competent communication in the medical encounter:a review and
model. Soc Sci Med. 2009;68:533543.

culture of reference is necessary. Adaptation of the style of assess-
ment and intervention represents a challenge in psychosocial
oncology. In China and Japan, for example, it has been found that
communication skills training should take into consideration cul-
tural variables in order to have a positive significant effect when
breaking bad news.44,45 Furthermore, for Japanese cancer patients,
family meetings during palliative care phases and a group inter-
vention should consider the native culture, with the need to adapt
the models when these are imported from Western countries.46
The application of instruments and tools should thus pre-
liminarily consider their translation and adaptation in that spe-
cific language and culture. These translations and adaptations
should pass tests of validity and reliability to be clinically use-
ful to the clinician. If these tools are applied in multicultural
psycho-oncology settings (e.g., in countries where immigration
is evident and where the contact with minorities is becoming
extremely common in daily practice), more needs to be done. The
aims of teaching cultural competence through specific educa-
tion programs should also take into account, in these multicul-
tural settings, which psychological instruments are validated for
use in screening and assessment, and how to administer them
in a way that allows one to address cultural and ethnic diversity
issues.47,48 In fact, since screening and assessment are part of a
specific encounter with a cancer patient and his or her family,
culturally competent communication should be part of a more
general patient-centered approach and effective patient-centered
communication framework. Teal and Street49 suggest as much in
their discussion of establishing a relationship, gathering informa-
tion, assessing and managing the problem (Box 51.1). We strongly
suggest that these skills and attitudes be part of every curriculum
in psychosocial oncology and that it extend from screening and
assessing to managing the psychosocial needs of cancer patients.
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 SECTION IX

Principles of
Psychotropic
Management

52 Psychotropic Medications in
Cancer Care 419
David P.Yuppa and Ilana M.Braun
 CHAPTER52
Psychotropic Medications
in Cancer Care
David P.Yuppa and Ilana M.Braun
INTRODUCTION
Psychiatric medications have wide-ranging utility in oncology.
Although these medications primarily address psychiatric condi-
tions from mood disorders to delirium, they may also be helpful
in managing non-psychiatric symptoms and side effects, includ-
ing cancer-related fatigue, sleep disturbances, nausea, anorexia,
weight loss, pain, and hot flashes. Over half of all cancer patients
receive at least one psychiatric medication during their can-
cer treatment.1 Acompetent psycho-oncologist must have some
knowledge of these medications, in terms of possible benefits and
side effects.
The chapter provides an overview of psychotropic medications,
reviewing major classes, on- and off-label uses, mechanism and
duration of action, side effects, risks, and important pharmacoki-
netic and pharmacodynamic drugdrug interactions. This chap-
ter is meant to supplement chapters on particular disorders and
symptoms that include more detailed information on psychiatric
medication uses. For purposes of this chapter, pharmacokinetic
interactions are defined as those that alter the amount and dura-
tion of a drugs availability; pharmacodynamic interactions are
the antagonistic, additive, or synergistic clinical effects of con-
comitantly administered agents.
ANTIDEPRESSANTS
Several classes of antidepressant medications exist. This section
will focus on antidepressant medications commonly used in the
cancer setting, such as selective serotonin reuptake inhibitors
(SSRIs), selective serotonin and norepinephrine reuptake inhibi-
tors (SNRIs), tricyclic antidepressants, and agents that are con-
sidered atypical antidepressants. Other antidepressants, such as
monoamine oxidase inhibitors (MAOIs), are not often used in the
oncology setting due to their interaction with oncologic agents.
The specific medications reviewed in this section are outlined in
Table 52.1.
Indications for Use
Although the US Food and Drug Administration (FDA) has
approved antidepressant use in depressive syndromes such
as adjustment disorder and major depression, and in anxiety
disorders such as general anxiety disorder, panic disorder, obses-
sive compulsive disorder, and post-traumatic stress disorder, few
randomized, double-blind, placebo-controlled trials have been
carried out specifically in people with cancer.24 In the absence of
such studies, general psychiatry practices guide psycho-oncology
standard of care.
In addition to their use for psychiatric indications, antidepres-
sants are sometimes employed off-label for their side effects, which
can actually be advantageous in the cancer setting. Sedating anti-
depressants, such as mirtazapine, nortriptyline, and trazodone,
can serve as soporifics. The appetite-stimulating effects of mir-
tazapine (due to its antihistaminergic properties) might be used
to address poor food intake and cachexia. Neuropathic pain is
most likely to respond to tricyclic antidepressants, but SNRIs
such as duloxetine and venlafaxine may be useful also. Hot flashes
induced by some cancer treatments might respond to SSRIs and
venlafaxine.5,6
Mechanism and Duration of Action
For the most part, antidepressants exert their effects by modu-
lating the serotonin and/or norepinephrine and dopamine sys-
tems. Serotonergic drugs are primarily the SSRIs, which include
citalopram, escitalopram, fluoxetine, paroxetine, and sertraline.
Bupropion is a dopaminergic and noradrenergic agent, and ven-
lafaxine and duloxetine possess dual action on both serotoner-
gic and noradrenergic systems. Venlafaxines dual action is dose
dependent. That is, it acts mainly as an SSRI at doses below 150
mg. At or above 150 mg, venlafaxine possesses strong serotoner-
gic and noradrenergic activity. Mirtazapines action is unique in
that at lower doses (7.5 mg) its action is mainly antihistaminer-
gic, but at doses at or above 30 mg, it becomes more noradren-
ergic. Individuals may develop tolerance to the medications
sedating effects over time, and potent noradrenergic effects at 45
mg may necessitate dosing in the morning rather than evening.
Mirtazapine also possesses serotonergic activity indirectly via its
action as a selective serotonin receptor agonist. This indirect sero-
tonergic action (as opposed to re-uptake inhibition) and 5-HT3
receptor antagonism makes mirtazapine an ideal choice of antide-
pressant in the oncologic setting, where nausea and other gastro-
intestinal upset are common. Although antidepressants may take
420 Section IX principles of psychotropic management

Table52.1 Antidepressants Commonly Used in the Cancer Setting

Drug Dose (mg/day PO) Possible Unique Benefits Possible Side Effects
Bupropion/Bupropion XL 75450 May be helpful for concentration and Headache, nausea, may lower endogenous endoxifen levels,
low energy;* fewer sexual side effects seizure (rarely)
Citalopram 1040 Few p450 interactions Headache, diarrhea, constipation, restlessness, sexual dysfunction
Duloxetine 2060 Neuropathic pain Worsening of narrow-angle glaucoma and hepatic insufficiency,
nausea, dizziness, fatigue, sexual dysfunction
Escitalopram 1020 Few p450 interactions Headache, diarrhea, constipation, restlessness, sexual dysfunction
Fluoxetine 1080 Long-acting so (1)may be dosed once Nausea, nervousness, weight gain, headache, insomnia, strong
weekly at 90 mg and (2)least likely to inhibition of tamoxifen metabolism and other CYP 2D6
trigger discontinuation syndrome substrates
Mirtazapine 7.545 Sleep aid at low doses;* appetite Dry mouth, sedating at low doses, weight gain, cholesterol and
stimulant;* anti-emetic;* less triglyceride increases
gastrointestinal side effects; minimal
sexual dysfunction
Paroxetine/ Paroxetine CR 560 (62.5, if CR) Headache, somnolence, dizziness, sexual dysfunction,
gastrointestinal upset, dry mouth, prominent discontinuation
syndrome, strong inhibition of tamoxifen metabolism and other
2D6 substrates
Sertraline 25200 Headache, diarrhea, constipation, restlessness, sexual dysfunction
Trazodone 25400 (outpatient), Sleep aid* Sedation, orthostasis, priapism, sexual dysfunction
600 (inpatient)
Venlafaxine/Venlafaxine XR 37.5300 Possibly helpful for hot flashes and Blood pressure increases, sexual dysfunction, prominent
neuropathic pain;* least interaction discontinuation syndrome
with tamoxifen metabolism; few p450
interactions

* Not FDA-approved indications.

four to six weeks to show full effect, the initial onset of action may
be more rapid (within the first two weeks).7
Side Effects and Risks
Specific antidepressant side effects vary by class of medication.
Common side effects include headache, gastrointestinal distur-
bances, nausea (particularly with paroxetine, duloxetine, and
venlafaxine, and if agents are started at high doses and escalated
too quickly), sedation (particularly with mirtazapine doses less
than or equal to 15 mg), weight gain (particularly with fluoxetine,
mirtazapine, and paroxetine), sexual dysfunction (particularly
with paroxetine and fluoxetine, less likely with bupropion), rest-
lessness, blood pressure increases (particularly with venlafaxine
doses at or above 225 mg/day, though the increase is often clini-
cally insignificant), dry mouth (particularly with tricyclics), and
lowering of the seizure threshold (particularly with tricyclic
antidepressants). Although the epileptogenic potential of bupro-
pion is well known, it has been largely overstated.8 As previously
mentioned, some of these side effects can be harnessed to help
with comorbid symptoms, such as using a sedating medication in
patients with insomnia and an appetite-inducing one in patients
with poor appetite and weight loss. In individuals with underlying
bipolar disorder, antidepressants have classically been associated
with increased risk of precipitating mania. For this reason, they
should be avoided if possible in this population in favor of mood
stabilizers such as lamotrigine (see under Anticonvulsants/Mood
Stabilizers in this chapter), or antipsychotics. Fluvoxamine, an
antidepressant indicated for obsessive-compulsive disorder and
social anxiety, is most often avoided in oncology and other medi-
cally ill patients due to its extensive and significant drugdrug
interaction profile.
Recently, the FDA has issued a MedWatch warning for cita-
lopram doses above 40 mg/day due to concerns of QT prolonga-
tion, further stipulating that the medication should be limited
to less than 20 mg/day in adults over age 60. There have been
similar directives in the literature to limit this antidepressant
to 20 mg/day in patients with poor 2C19 metabolism or those
who are concurrently taking strong 2C19 inhibitors such as
omeprazole. With all this said, these warnings remain contro-
versial. Arecent cohort study 9 of nearly 1,000,000 patients dem-
onstrated that citalopram doses greater than 40 mg/day were
associated with lower risks of ventricular arrhythmia, all-cause
mortality, and non-cardiac mortality when compared to doses
of 20 mg or less. No increased risks of cardiac mortality were
found in this large cohort.
Long-term antidepressant use carries few known risks. There is
some evidence to suggest that antidepressants increase the inci-
dence of fracture among the elderly.10,11 Certain antidepressant
medications, such as SSRIs, may also slightly increase bleeding
risk.12 These vulnerabilities purportedly arise through antide-
pressants serotonergic effects on bone and platelets, respectively.
Although some (mainly older generation) antidepressants have

been shown to promote tumor growth in animal studies, epide-
miological research has not concluded that newer agents such as
SSRIs have similar effects in humans.13
The abrupt cessation of antidepressants may be associated
with a discontinuation syndrome that can include malaise,
light-headedness, anxiety, nausea, dizziness, and lightning-like
pains in extremities. This syndrome is most pronounced in anti-
depressants with short half-lives. Agents with notable withdrawal
reactions include paroxetine, venlafaxine, and duloxetine. If pos-
sible, discontinuation of any antidepressant should be gradual
over the course of several weeks to months. If a gradual dis-
continuation still produces troublesome symptoms, a transi-
tion from the current agent to fluoxetine can be employed (due
to the extended half-life of norfluoxetine, the primary active
metabolite).
Very rarely, antidepressants trigger excess serotoninergic activ-
ity in the central nervous system, a condition known as serotonin
syndrome. The hallmarks of this illness include acute onset auto-
nomic instability, mental status changes, and neuromuscular
signs including clonus, myoclonus, and hyperreflexia. Although
serotonin syndrome may occur in individuals on a single sero-
toninergic agent at a therapeutic level, it typically occurs in the
setting of multiple serotinergic agents at high doses. Examples of
serotinergic agents outside the psychiatric medicine chest include
analgesics such as fentanyl, meperidine, and tramadol, and the
antibiotic linezolid (a weak MAOI). At least theoretically, the pres-
ence of serotonin-secreting carcinoid tumors can also predispose
individuals to the condition. Management of serotonin syndrome
involves the removal of all offending agents and the institution of
supportive care.
A similar process can also be seen with the use of noradgren-
ergic antidepressants in patients with pheochromocytomas. Such
antidepressants can precipitate even higher levels of epinephrine,
leading to hypertensive crises. Although there have some case
reports of SSRIs also causing the same results, they are considered
safer and may be prescribed with caution and close monitoring in
patients with pheochromocytomas.14
DrugDrug Interactions
Because polypharmacy is the norm for cancer patients, atten-
tion to possible pharmacokinetic and pharmacodynamic drug
drug interactions is essential when considering the addition of
a psychotropic medication. A single agent can disrupt the bal-
ance of an established pharmaceutical regimen. In general, one
should select an agent with few drugdrug interactions and rely
on its lowest effective dose. Antidepressants that carry a risk of
significant pharmacokinetic drug interactions and that should
probably be avoided in the cancer setting include fluoxetine and
paroxetine. These agents are inhibitors of cytochrome 2D6 (CYP
2D6), a pathway responsible for metabolism of many antidepres-
sants, antipsychotics, beta-blockers, and narcotics including
codeine, oxycodone, and methadone. Concomitant administra-
tion of these antidepressants and CYP 2D6 substrates can the-
oretically lead to dangerous accumulation of the latter in the
body. Bupropion might also inhibit CYP 2D6, but less seems to
be known about its metabolism. As above, fluvoxamine is also
generally avoided in the oncology setting due to its action as a
cytochrome p450 1A2 (CYP 1A2), cytochrome p450 2C9 (CYP
Chapter52 psychotropic medications 421
2C9), cytochrome p450 2C19 (CYP 2C19), and cytochrome p450
3A4 (CYP 3A4) inhibitor.
Caution should also be taken when prescribing duloxetine in
the medically ill. In addition to undergoing CYP 2D6 metabolism,
this agent is metabolized along a CYP 1A2 pathway. Drugs that
inhibit this pathway, including cimetidine and fluoroquinolones,
can significantly increase duloxetine blood levels, placing patients
at risk for hepatotoxicity. Similarly, CYP1A2 inducers such as
cigarette smoking and omeprazole can significantly reduce dulox-
etine blood levels and, by extension, its effect.
A pharmacokinetic drugdrug interaction worthy of special
mention is the potential interaction between many antidepres-
sants and tamoxifen. Antidepressants are frequently prescribed in
the setting of tamoxifen use for their effectiveness both in treating
psychiatric side effects and in ameliorating hot flashes exacerbated
by the hormone antagonist. Unfortunately, fluoxetine, paroxetine,
and, to a lesser extent, other antidepressants are metabolized along
a shared cytochrome p450 pathway with tamoxifen. This pathway
is of the 2D6 isoenzyme. By impeding the conversion of tamoxifen
to its active metabolite endoxifen, antidepressants may decrease
tamoxifens efficacy. In the setting of depression and tamoxifen
use, the antidepressant of choice is venlafaxine, followed closely
by escitalopram and citalopram. While prescribing antidepres-
sants for patients taking tamoxifen can become highly nuanced,
as of this writing there are no known associations between 2D6
metabolism and breast cancer recurrence. That said, a recent
study has demonstrated that paroxetine use during tamoxifen
treatment is associated with an increased risk of death from breast
cancer.15 Only approximately 40% of the inter-individual variabil-
ity in endoxifen concentrations is explained by the 2D6 genotype.
Other factors impacting endoxifen concentration include con-
comitant medications, CYP 3A4 activity, and CYP 2C9 activity.
There are little to no data for bupropion, duloxetine, mirtazapine,
and trazodone.
ANXIOLYTICS
Anxiolytics fall under two broad classes: barbiturates and ben-
zodiazepines. Because of their potential for drugdrug interac-
tions and side effects, barbiturates are rarely used in the cancer
setting. Benzodiazepines, however, are very commonly used for
both psychiatric and non-psychiatric reasons (i.e., nausea, muscle
spasm). Some of the more widely prescribed benzodiazepines are
described in Table 52.2.
Indications for Use
In contrast to antidepressants that take weeks to exert their full
effects, benzodiazepines rapidly curb psychic distress and pro-
mote sleep. In the cancer setting, they are frequently used to man-
age acute anticipatory anxiety, for instance before chemotherapy
or magnetic resonance imaging, and in the case of specific pho-
bias, such as needle sticks or the radiation mask in head and neck
cancers. They serve as useful adjuncts to antidepressants in quell-
ing acute anxiety and, although not FDA approved for this indica-
tion, as sleep aids. Because they do little to prevent future episodes
of anxiety, however, they should not be used in lieu of antidepres-
sants in the setting of major depression or an enduring anxiety
disorder.
422 Section IX principles of psychotropic management

Table52.2 Benzodiaepines Commonly Used in the Cancer Setting

Drug Dose Half-life Possible Unique Benefits Possible Side Effects and Risks
(mg/day) (hours)
Alprazolam 0.1252 PO 620 Helpful in the management of anxiety; no Sedation, dizziness, ataxia (or other psychomotor impairment),
cross-tolerance with other benzodiazepines memory impairment, irritability, rebound anxiety, sexual
dysfunction, disorientation; high potential for abuse, tolerance,
dependence; withdrawal on abrupt discontinuation, multiple
CYP3A4-based drug interactions
Clonazepam 0.254 PO 2050 Helpful in the management of anxiety, seizure Sedation, dizziness, ataxia (or other psychomotor impairment),
disorders, nocturnal sleep disorders,* neuralgia,* memory impairment, irritability, sexual dysfunction,
mania;* may have less abuse liability than disorientation, abuse, tolerance, dependence, withdrawal on
shorter-onset agents abrupt discontinuation
Diazepam 120 PO, IV, 3060 Helpful in the management of anxiety, alcohol Sedation, dizziness, ataxia (or other psychomotor impairment),
IM withdrawal, muscle spasm, seizure disorders memory impairment, irritability, sexual dysfunction,
disorientation, abuse, tolerance, dependence, withdrawal on
abrupt discontinuation, bradycardia and respiratory depression
Lorazepam 0.52 PO, 1018 Helpful in the management of anxiety, Sedation, dizziness, ataxia (or other psychomotor impairment),
IV, IM depression,* seizure disorders,* alcohol memory impairment, irritability, sexual dysfunction,
withdrawal,* and as an anti-emetic; preferable in disorientation, abuse, tolerance, dependence, withdrawal
those with liver disease as not subject to Phase on abrupt discontinuation, bradycardia, and respiratory
Imetabolism depression
Oxazepam 530 PO 612 Helpful in the management of anxiety and Sedation, dizziness, ataxia (or other psychomotor impairment),
alcohol withdrawal; preferable in those with liver memory impairment, irritability, sexual dysfunction,
disease as not subject to Phase Imetabolism; disorientation, abuse, tolerance, dependence, withdrawal on
may have less abuse liability than shorter-onset abrupt discontinuation, blood dyscrasias
agents
Temazepam 7.515 PO 1012 Helpful in the management of anxiety, Sedation, dizziness, ataxia (or other psychomotor impairment),
depression, insomnia; preferable in those memory impairment, irritability, sexual dysfunction,
with liver disease as not subject to Phase disorientation, abuse, tolerance, dependence, withdrawal on
Imetabolism; may have less abuse liability than abrupt discontinuation
shorter-onset agents
Midazolam 110 IV/IM 16 Conscious sedation in the terminally ill; short Respiratory depression, hypotension, multiple CYP3A4-based
acting, so easily reversible drugdrug interactions

* Not FDA-approved indications.

Abbreviations:GI=gastrointestinal; IM=intramuscular; IV=intravenous; PO=per oral; CYP=cytochrome.

Benzodiazepines have far-reaching medical utility. They are often
used as skeletal muscle relaxants, anti-emetics, and anticonvul-
sants.16 Midazolam, a benzodiazepine derivative, boasts sedative
and amnestic properties that render it ideal for palliative sedation.17
Finally, benzodiazepines are commonly used in the management
and prevention of alcohol withdrawal. Alcohol-dependent patients
might abruptly decrease or cease alcohol consumption in the set-
ting of a hospital admission, and a life-threatening syndrome can
ensue, marked by profound autonomic instability, sensorium
alterations, and agitation. Benzodiazepines mimic the binding of
alcohol to its receptor. When administered in doses large enough
to block autonomic instability, these medications dampen signs of
withdrawal and can be slowly tapered, often to life-saving benefit.
Mechanism and Time Course of Action
Like alcohol, benzodiazepines bind to the benzodiazepine binding
site of gamma-amino butyric acid (GABA)A receptors, enhanc-
ing the binding of the inhibitory neurotransmitter, GABA, to the
receptor. The set of interactions leads to inhibitory effects on the
central nervous system.
Onset and duration of action vary widely among agents. Such
differences are of clinical significance as benzodiazepines with
rapid onset of action, for instance alprazolam and diazepam, are
more likely to trigger euphoria and substance abuse than agents
with slower onset of action, for instance clonazepam and oxaz-
epam. Longer acting agents such as clonazepam and diazepam
are more likely than shorter acting agents such as alprazolam or
lorazepam to accumulate in the system. These characteristics may
lead to the amplification of side effects described below, but also
may be of clinical benefit when treating severe alcohol withdrawal.
In the cancer setting, chlordiazepoxide is most often reserved
exclusively for the treatment of alcohol withdrawal due to its long
half-life and duration of action.
Side Effects and Risks
Benzodiazepines can trigger central nervous system side effects,
including sedation, dizziness, ataxia and frequent falling, antero-
grade amnesia, irritability, behavioral disinhibition, respira-
tory depression, and disorientation. As sleep aids, they can have
adverse effects on respiration and on sleep architecture, with
decreases in both slow wave sleep and rapid eye movements.18 The
 Chapter52 psychotropic medications 423

above-mentioned side effects may be particularly pronounced in
the elderly and in those with central nervous system fragility, for
instance, as a result of a cerebral vascular accident, traumatic
brain injury, or lesion. They should be used with caution, if at
all, in these populations. Because benzodiazepines carry abuse
liability, they should also be used with caution in individuals
with histories of substance abuse, particularly of alcohol. Agents
with the greatest risk for abuse include alprazolam, diazepam,
and lorazepam.19
After prolonged use, benzodiazepines should be discontinued
gradually over the course of weeks or even months. Abrupt cessation
may lead to powerful withdrawal reactions characterized by hyper-
thermia, autonomic arousal, sweating, neuromuscular irritability,
paranoia, hallucinations, and seizures. As of 2009, there have only
been two cases of death due to alprazolam withdrawal.20
DrugDrug Interactions
In general, anxiolytics boast few pharmokinetic drugdrug inter-
actions. Three exceptions are alprazolam, midazolam, and tri-
azolam. The cytochrome p450 3A (CYP 3A) pathway metabolizes
these drugs, rendering them sensitive to a wide array of CYP 3A
inhibitors and inducers that raise and lower their concentrations,
respectively. CYP 3A inhibitors include macrolide antibiotics,
several antifungals, cimetidine, fluoxetine, and grapefruit juice.
CYP 3A inducers include several anti-epileptic medications and,
important to the practice of oncology, dexamethasone. Because
of the pharmacologic complexity of many cancer treatment regi-
mens, anxiolytics with fewer p450 interactions are preferable in
this setting.
The sedating effects of benzodiazepines are additive with
those of other sedating medications, including antidepressants
such mirtazapine and trazodone, certain antipsychotics, and
narcotics.
STIMULANTS
Although most notably associated with treatment of attention def-
icit hyperactivity disorder, stimulants are also very useful agents
for medically ill patients. The stimulant medications detailed in
this section are outlined in Table 52.3.
Indications for Use
Food and Drug Administration approved for the management
of attention deficit disorder and narcolepsy, stimulants such
as amphetamine and methylphenidate have several impor-
tant off-label uses in the cancer setting. First, like benzodi-
azepines for anxiety, methylphenidate and amphetamine can
bolster a depressed patient in the period before an antidepressant
takes full clinical effect. The medications may increase energy,
stimulate appetite and concentration, and provide a sense of
well-being. Although stimulants are frequently used as mono-
therapy for depression in cancer, there are no data to support
this practice, and stimulant monotherapy has been shown not
to be effective in treating depression in the general population.
Second, stimulants might help with cancer-related fatigue, one of
the most debilitating symptoms of cancer and its treatment. 21 In
the instances in which fatigue persists after reversible causes have
been addressed, stimulants, along with behavioral modifications,

Table52.3 Stimulants Commonly Used in the Cancer Setting

Drug (generic name in bold, Duration of Dose (mg/day) Possible Unique Benefits Possible Side Effects
followed by trade name) Action (hours)
Methylphenidate
Ritalin 24 2.545 Appetite stimulation at lower doses* Appetite suppression, insomnia, anxiety,
irritability as medication wears off, abuse
potential, increase in blood pressure,
elevated heart rate, sudden death
Amphetamine/Dextroamphetamine
Adderall 46 2.540
Adderall XR 8+ 520
d-Amphetamine
Dexedrine, Dextrostat 45 2.540 May improve symptoms of common
Dexedrine spansules 8 540 cold*

d-Methylphenidate
Focalin 35 1.2520 d-methylphenidate is touted
as having less of a crash than
dl-methylphenidate
Provigil
Modafinil 818 25200 Low abuse potential; DEA Schedule Headache; mild GI distress; anxiety;
IV drug; marketed as gentler and less insomnia
likely than other stimulants to trigger
insomnia

* Not FDA-approved indications.

Abbreviations:DEA=Drug Enforcement Administration; GI=gastrointestinal; IV=intravenous.
424 Section IX principles of psychotropic management
could potentially improve functionality (although randomized
clinical trials have not yet been convincing).22 In at least six clini-
cal trials, only one demonstrated significant reductions in cancer
fatigue with methylphenidate. Third, stimulants can combat the
sedating effects of narcotics, which may be necessary for adequate
pain control. Finally, these medications may have some utility in
the management of cancer-related cognitive difficulties, colloqui-
ally referred to as chemo-brain or chemo-fog.23,24
Modafinil and armodafinil, newer FDA-approved agents for
excessive sleepiness caused by narcolepsy, obstructive sleep apnea,
and shift work sleep disorder, improve wakefulness and may help
with fatigue, sedation from narcotics, and cancer-related cogni-
tive difficulties in the cancer setting. 25 However, a recent ran-
domized controlled trial suggests that modafinil is only effective
for severe cancer-related fatigue.26 As of this writing, there are no
published studies documenting safety or efficacy of armodafinil
in cancer patients.
Mechanisms and Time Course of Action
The primary actions of amphetamine and methylphenidate are
twofold:to promote neuronal release of dopamine, as well as to
prevent the neurotransmitters reuptake. While amphetamine
and methylphenidate exert their effects in several brain areas,
modafinil acts specifically on excitatory histamine projections to
the hypothalamus. The discrete nature of its effect has led some
experts to view it as a gentler medication, as compared to other
stimulants, in terms of both effect and side effects.
Stimulants vary widely in their duration of action. The effects
of immediate release methylphenidate and amphetamine wear
off in several hours, necessitating twice or thrice daily dosing.
Extended-release versions of these medications, as well as of
modafinil, persist for much of the day.
Side Effects and Risks
Although generally well tolerated, amphetamine and methyl-
phenidate use can result in untoward side effects including appe-
tite suppression, insomnia, anxiety, and a crash characterized
by irritability as their effect wanes late in the day. They possess
moderate-high abuse potential and for this reason are classified by
the Drug Enforcement Agency as Schedule II substances. Finally,
they possess the potential to cause elevations in blood pressure
and heart rate. We recommend relying on the lowest effective
dose of medication. Further, a recent study demonstrated poorer
tolerability with long-acting stimulants.27 For this reason, we
recommend treatment with instant release preparations.
Modafinil can commonly trigger headache, mild gastrointesti-
nal (GI) distress, and anxiety. Less common side effects include
insomnia, heart rate increases, and blood pressure elevations. It
has not been extensively studied in populations with cardiac dis-
ease. Rarely (in < 1% of users), it can cause rash that can progress
to StevensJohnson syndrome.
DrugDrug Interactions
Modafinil is an inducer of the CYP 3A enzyme and can lead to
overmetabolism of CYP 3A substrates, including oral contracep-
tives, steroids, cyclosporine, and some anxiolytics, tricyclic anti-
depressants, and anticonvulsants. Other stimulants do not have
significant pharmacokinetic drugdrug interactions.
ANTIPSYCHOTICS
Since first-generation antipsychotics were known to carry risks of
neurologic and cardiac side effects, these agents waned in popu-
larity with the arrival of the newer antipsychotic medications,
which were considered safer in these respects. Second-generation
antipsychotics, known as atypicals, are now understood to have
the potential for their own concerning side effects such as glu-
cose intolerance and metabolic syndrome. Although both types
of antipsychotic medications can have serious side effects, they
remain important and essential medications in the treatment
of psychiatric disorders and symptoms. The following section
reviews the pharmacology of both newer agents such as aripipr-
izole, olanzapine, quetiapine, risperidal, and of haloperidol, a
first-generation antipsychotic that remains the gold standard
for delirium management. These medications are described in
Table 52.4.
Indications for Use
In general psychiatry, antipsychotics are used in the manage-
ment of bipolar disorder and psychotic disorders such as schizo-
phrenia, schizoaffective disorder, and depression with psychotic
features. In medical settings, they are also used off-label in the
management of delirium. Although the primary treatment for
delirium is the identification and correction of the underlying
medical cause, antipsychotics are used for the distress and agita-
tion that often accompany confusion. At low doses, antipsychot-
ics improve sensorium, alertness, and perhaps even cognition. At
higher doses, they are sedating. Antipsychotics also have utility
in non-delirious patients. The more sedating of these medica-
tionsolanzapine, and quetiapineare used off-label as sleep
aids, particularly in substance abusers for whom traditional hyp-
notics may be contraindicated. They can be used for anxiety that
is refractory to benzodiazepines or for patients in whom benzodi-
azepines are contraindicated. Haloperidol is less sedating but can
be used effectively in these clinical scenarios as well. In patients
whose agitation or delirious symptoms persist beyond high daily
doses of haloperidol, chlorpromazine may be uniquely helpful due
to its sedating qualities, lower risk of extrapyramidal symptoms,
and larger dose range. This strategy can be particularly useful in
the palliative care setting when sedation is needed and parenteral
routes of delivery are preferred.
Although not FDA-approved for this indication, antipsychotics
may be particularly useful in managing the side effects of glu-
cocorticoid steroids, including irritability, sleep disturbance, and
mood symptoms. 28 Some antipsychotics, including haloperidol,
perphenazine, and olanzapine, may have anti-emetic properties.
These effects may be similar to those of prochlorperazine and
metoclopramide, which can make them useful agents with che-
motherapy regimens.13 In addition, olanzapine increases appe-
tite, which can be useful in patients with cachexia. Of note, when
co-administering antipsychotics with prochlorperazine or meto-
clopraminde, the clinician should monitor for possible synergis-
tic anti-dopaminergic side effects, most notably akathisia.
Mechanism and Time Course of Action
A crucial action of both first- and second-generation antipsychot-
ics is to modulate the dopamine neurotransmitter system, which
becomes overactive in both psychotic illness and delirium. The

Table52.4 Antipsychotics Commonly Used in the Cancer Setting
Drug Dose (mg/day) Half-life (hours)
Aripiprazole 230 PO 75 (active
metabolite:94)
Chlorpromazine 12.5600 PO/IM/IV 2337 (active
metabolite:1040)
Haloperidol 0.2515 PO/IM 0.2550 1236
IV (upper limits only in
cases of severe agitation)
Olanzapine 2.520 PO/SL/IM 2154
Quetiapine 12.5750 PO 6 Useful as sleep aid* and in
Quetiapine XR (50600 mg if XR)
Risperidone 0.2512 PO 320
* Not FDA-approved indications.
Abbreviations: IM=intramuscular; IV=intravenous; PO=per oral.
All associated with risk in elderly with dementia-related psychosis, safe in delirium.
mode of efficacy of antipsychotics in treating delirium can be
more directly explained via the reciprocal relationship of dopa-
mine to acetylcholine, whereby reduced dopaminergic activity
produces a pro-cholinergic state conducive to improved cognition.
Many atypical antipsychotics, including aripiprizole, olanzapine,
quetiapine, and risperidone, also act on the serotonin system (via
5-HT2 receptor antagonism), but unlike SSRIs, do not impact
serotonin re-uptake. Most antipsychotics have half-lives of a day
to several days. Exceptions include quetiapine, with a half-life of
approximately 6 hours. The makers of quetiapine have recently
released a long-acting version, with a half-life of 912 hours.
Side Effects and Risks
First-generation antipsychotics (such as thioridazine) have been
associated with cardiac and neurologic side effects. Hypotension
and QT prolongation occur frequently, the latter placing individu-
als at risk for a very rare but potentially fatal torsades de pointes
arrhythmia. The use of high doses of intravenous haloperidol has
in some cases been associated with torsades de pointes,29 though
other case reports describe very large doses (greater than 100 mg/
day and single doses of 75 mg) of intravenous haloperidol30 being
used safely for the treatment of agitation in the critical care set-
ting. According to the 1999 APA practice guidelines, estimates of
the incidence of torsades de pointes among patients with delirium
treated with intravenous haloperidol range from four out of 1,100
patients to eight out of 223 patients.31 These guidelines further rec-
ommend a baseline ECG, with special attention paid to the length
of the QTc interval. Aprolongation of the QTc interval to greater
than 450 msec or to greater than 25% over that in previous ECGs
may warrant telemetry, a cardiology consultation, and dose reduc-
tion or discontinuation. It has also been recommended that serum
Chapter52 psychotropic medications 425
Possible Unique Benefits Possible Side Effects
Little sedation, Metabolic syndrome, orthostasis, cognitive and motor
Hypoactive delirium* impairment
Sedation,* control of severe Cardiac arrhythmia; extrapyramidal side effects,
agitation* hypotension, QT prolongation
No metabolic syndrome risk; Cardiac arrhythmia; extrapyramidal side effects,
useful as sleep aid* hypotension, worsening of narrow-angle glaucoma
Useful as sleep aid* and potent Metabolic syndrome, orthostasis, sedation, headache, dry
anti-emetic* mouth, constipation, increased mortality risk in elderly
Metabolic syndrome, sedation, headache, orthostasis,
treating depression in context cataracts, QT prolongation, increased mortality risk in
of bipolar disorder, as well as elderly
adjunct treatment of major
depression
Useful as sleep aid* Metabolic syndrome, orthostasis, extrapyramidal side
effects at high doses, arrhythmias, sedation, blood
dyscrasias, dry mouth, constipation, increased mortality
risk in elderly, significant prolactin elevation
levels of magnesium and potassium be monitored in critically ill
patients, especially those whose baseline QTc interval is 440 msec
or longer, those who are receiving other drugs that increase the
QT interval, or those who have electrolyte disturbances.
Neuroleptic-induced movement disorders, referred to as extra-
pyramidal symptoms, include Parkinson-like movements, dysto-
nia, and a subjective sense of restlessness referred to as akathisia.
The side effects usually remit with medication withdrawal.
Occasionally, first-generation antipsychotics (and anti-emetics
such as metoclopramide and prochlorperazine) trigger tardive
dyskinesia: uncontrollable, repetitive, and purposeless move-
ments such as lip smacking, blinking, or arm flailing. These move-
ment disorders can persist for months to years after the agent
has been withdrawn and, in some instances, may become per-
manent. First-generation antipsychotics should be used at their
lowest effective doses and avoided, if possible, in patients with
Parkinsons disease or who are on other medications that prolong
QT. Arecent review article has shown that doses of haloperidol
less than 3.5 mg daily do not pose an increased risk of extrapyra-
midal side effects when compared to atypicals.32
Newer antipsychotics have a different side-effect profile. With
the exception of ziprasidone, they do not cause significant QT pro-
longation. In addition, atypical antipsychotics more infrequently
cause extrapyramidal symptoms or tardive dyskinesia. They are,
however, not completely without risk. Atypicals have the poten-
tial to cause signs of metabolic syndrome, including weight gain
and elevations in blood glucose and cholesterol levels. They are
also associated with increased risk for stroke and even premature
death in the elderly.
Very rarely, antipsychotics trigger dose-dependent excess
dopamine blockade in the central nervous system, known as
426 Section IX principles of psychotropic management

neuroleptic malignant syndrome (NMS). The hallmarks of this ANTICONVULSANTS/MOOD STABILIZERS

dangerous condition include muscle rigidity, fever, autonomic
instability, and cognitive changes. Laboratory assessment in the
setting of the illness is notable for elevated creatine phosphoki-
nase. Particularly since exhaustion, dehydration, malnutrition,
and polypharmacy are risk factors for this condition, cancer
patients, at least theoretically, represent a high-risk group. 33 NMS
management includes withdrawal of the offending agent and sup-
portive measures.
Although lithium is widely used for mood stabilization in general
psychiatry, its narrow therapeutic window, sensitivity to subtle
fluctuations in fluid balance, and many adverse effects make it less
frequently used in the setting of cancer treatment. The following
section focuses on other mood stabilizers that are commonly used
in cancer patients, such as lamotrigine, gabapentin, pregabalin,
and valproic acid (Table 52.5).

DrugDrug Interactions Indications for Use

Antipsychotics are vulnerable to a variety of pharmacokinetic
drugdrug interactions. The CYP 3A4 enzyme metabolizes
aripiprizole, quetiapine, and ziprasidone. Cytochrome 3A inhib-
itors include macrolide antibiotics, several antifungals, cimeti-
dine, fluoxetine, and grapefruit juice. Cytochrome 3A inducers
include several anti-epileptic medications and, important to
the practice of oncology, dexamethasone. Aripiprizole, halo-
peridol, olanzapine, and risperidone are CYP 2D6 enzyme sub-
strates. Inhibitors of the CYP 2D6 enzyme that may significantly
increase levels of these drugs include fluoxetine, paroxetine, hal-
operidol, and quinidine. Finally, olanzapine is metabolized in
part along the cytochrome CYP 1A2 pathway. Inhibitors of this
pathway that increase olanzapines blood concentration include
fluoroquinolones and cimetidine; CYP 1A2 inducers that lower
blood concentration of the drug include cigarette smoking and
omeprazole.
Antipsychotics are also subject to several pharmacodynamic
drugdrug interactions. Several of their potential side effects
are additive with those of other agents. The QT-prolongating
effects of first-generation antipsychotics are additive with those
of other QT-prolongating medications including erythromycin,
methadone, pentamidine, and amiodarone.34 The sedating effects
of antipsychotics such as olanzapine and quetiapine are com-
pounded by those of central nervous system depressants including
benzodiazepines and narcotics. Finally, the hypotensive effects of
atypical antipsychotics and haloperidol can significantly magnify
the actions of traditional antihypertensives.
Many anticonvulsants are used as mood stabilizers in bipolar
disorder and as medications for neuropathic pain syndromes. 35
Carbamazepine, lamotrigine, and valproic acid (as well as dival-
proex sodium and sodium valproate) can quell manic episodes;
lamotrigine protects individuals against depressive ones. Some
psychiatrists include gabapentin in their management of bipolar
disorder, particularly in mild cases. 36 However, there are little
data to support this strategy, and the FDA has not approved gaba-
pentin for this indication. These medications are also sometimes
used for manic-like presentations in the context of cancer or can-
cer treatment, such as steroid use and brain metastases.
Mechanisms and Onset of Action
Lamotrigine stabilizes neuronal membranes by blocking the glu-
tamate neurotransmitter system. Gabapentin, pregabalin, and
valproic acid all exert their effects by amplifying the inhibitory
GABA neurotransmitter system. The exact mechanisms by which
they achieve this end are poorly elucidated. Carbamazepine also
exerts inhibition effects through its effects on sodium channels.
Anticonvulsants have relatively short half-lives and ideally should
be dosed two to three times daily.
Side Effects
Common side effects of anticonvulsants include sedation, diz-
ziness, nausea, ataxia, headache, tremor, visual changes, and
rash. Over the long term, these medications, and particularly
valproic acid and pregabalin, can lead to significant weight

Table52.5 Mood Stabilizers Commonly Used in the Cancer Setting

Drug Dose (mg/day) Possible Unique Benefits Possible Side Effects

Gabapentin 1002400 PO May serve as sleep aid,*, analgesic in Somnolence, dizziness, ataxia, peripheral edema
neuropathic pain syndromes, anticonvulsant,
anti-anxiety medication,* and anti-emetic in
intractable cases*
Lamotrigine 25200 PO Anticonvulsant and mood stabilizer that Rash that rarely progresses to StevensJohnson syndrome,
prophylaxis against depression in bipolar photosensitivity, headache, gastrointestinal upset, dizziness, ataxia
disorder
Pregabalin 50300 PO May serve as analgesic in neuropathic pain Dizziness, drowsiness, dry mouth, peripheral edema, blurred vision,
syndromes; anticonvulsant; antianxiety weight gain, difficulty concentrating
medication*
Divalproex sodium, 25060 mg/kg/ May have utility as sleep aid;* allows for Somnolence, dizziness, GI upset, double vision, ataxia,
Sodium valproate, day PO therapeutic blood level monitoring thrombocytopenia, hepatitis, alopecia, weight gain,
Valproic Acid thrombocytopenia, agranulocytosis

* Not FDA-approved indications.

Abbreviations:GI=gastrointestinal; PO=per oral.
 Chapter52 psychotropic medications 427

gain. Pregabalin should be avoided in patients with severe renal
impairment, in the elderly, and in the setting of severe con-
gestive heart failure. It, along with the other anticonvulsants,
should be tapered slowly. Valproic acid and sodium valpro-
ate are associated with rare idiosyncratic toxicities including
hemorragic pancreatitis and agranulocytosis. Although gener-
ally very well tolerated, lamotrigine is associated with a rash
in 10% of its users. Very rarely, such a rash progresses to the
life-threatening StevensJohnson syndrome. To reduce risk for
a serious rash, the medication should be started at low dose and
titrated upward quite gradually, for instance, by 25 mg every two
weeks. Individuals on the medication should be encouraged to
maintain stable drug levels by not missing doses and should stop
the drug at the first appearance of any rash.
DrugDrug Interactions
Lamotrigine is metabolized solely by glucuronidation and
does not affect the p450 hepatic enzymes itself. When taken
in conjunction with lamotrigine, valproic acid (as well as
sodium valproate) significantly increases lamotrigine blood
concentrations, ostensibly by competing for a particular step
in the glucuronidation pathway. In the setting of combined
therapy with lamotrigine and valproic acid, the former should
be titrated to its target dose extremely slowly, for instance by
12.5 mg every two weeks, to minimize the risk for serious rash.
Gabapentin and pregabalin boast minimal pharmacokinetic
drugdrug interactions. The sedating effects of anticonvul-
sants may be pharmacodynamically additive with other sedat-
ing medications.
HYPNOTICS
Hypnotics are medications that induce sleep. The hypnotics
detailed in this section are outlined in Table 52.6.
Indications for Use
Hypnotic drugs aid in both sleep induction and maintenance.
The causes of insomnia vary widely between people, however,
and understanding the etiologies of a particular sleep disturbance
may lead to a more targeted treatment approach. Over the long
term, one might best manage insomnia due to (1)depression or
anxiety with an antidepressant medication (not even necessarily
a sedating one), (2) steroids with their reduction or cessation,
(3)menopausal symptoms with the antidepressant venlafaxine or
the anticonvulsant gabapentin, (4)obstructive sleep apnea with a
positive airway pressure machine, (5)restless legs syndrome with
gabapentin, ropinirole, or pramipexole, and (6) a pain disorder
with appropriate analgesia. In the short term, however, hypnot-
ics can be useful sleep-promoting agents and, at least in the case
of zolpidem, do so without affecting normal sleep architecture or
breathing patterns.
Mechanisms and Time Course of Action
Like sedatives, hypnotics act on the GABAergic system. They tend
to have short half-lives. Eszopiclone and zalepon with half-lives of
one hour are ideal for patients with sleep initiation difficulties. The
intermediate acting zolpidem with a half-life of two to three hours
and long-acting zolpidem CR with half-life of seven hours are
preferable in individuals with mid-cycle awakenings and short-
ened total sleep duration.
Side Effects and Risks
For the most part, hypnotics tend to have benign side-effect pro-
files. Most commonly, individuals may experience a mild hang-
over following their use, particularly with longer acting agents.
Eszopiclone has gained some notoriety for a metallic taste follow-
ing its ingestion. Zolpidem has received attention for its uncom-
mon association with sleep-related disorders such as sleepwalking,
eating, and even driving. It has also been associated with and hal-
lucinations. Recent statements from the US FDA37 have changed
the maximum dosing recommendations of zolpidem to 10 mg in
men, 5 mg in women, and of zolpidem CR to 12.5 mg in men, 6.25
mg in women.
Although hypnotics have low potential for tolerance and with-
drawal, abrupt hypnotic cessation following prolonged use may
lead to a brief period of rebound insomnia. Unlike anxiolytics,
they are not dependency-forming; however, they do carry some
abuse liability. For this reason, hypnotics are best avoided in indi-
viduals with strong histories of substance abuse or dependence.
Finally, in delirious patients, a sedating antipsychotic such as
olanzapine or quetiapine is preferable to a hypnotic; in a man-
ner similar to an anxiolytic, the latter can worsen an underlying
encephalopathy.

Table52.6 Hypnotics Commonly Used in the Cancer Setting

Drug Dose (mg/day) Possible Unique Benefits Possible Side Effects

Eszopiclone 13 Low potential for tolerance and withdrawal; short
half-life (~1 hour) renders it ideal for patients with
sleep initiation difficulties
Zaleplon 520 Low potential for tolerance and withdrawal; short
half-life (~1 hour) renders it ideal for patients with
sleep initiation difficulties
Headache, dry mouth, somnolence, dizziness,
hallucinations, rash, unpleasant metallic taste after
ingestion
Headache, somnolence, amnesia, photosensitivity, edema;
should be used with caution in patients with hepatic or
renal insufficiency

Zolpidem37 Zolpidem:2.510 (Max 5 mg Helpful in the short-term management of insomnia; Headache, dizziness, drowsiness, nausea, myalgia, sleep
in women, 10 mg in men low potential for tolerance and withdrawal; tends eating syndrome, hallucination, addiction
Zolpidem CR37 Zolpidem CR:6.2512.5 (max not to impair nocturnal respiratory and sleep
6.25 mg in women) architecture
428 Section IX principles of psychotropic management
DrugDrug Interactions
Hypnotics have minimal pharmacokinetic drugdrug interactions.
Other sedating medications can compound their sedating effects.
CONCLUSION
In oncology, psychotropic medications are used to treat both psychi-
atric and cancer-related symptoms. Although many of these medi-
cations are FDA approved for specific psychiatric disorders, there
are very few clinical trials in cancer patients for these same indica-
tions. Individuals with cancer are usually much more complicated
than the typical participant in a general psychiatry clinical trial in
terms of both medical comorbidity and psychosocial challenges.
While general psychiatry can guide the use of these medications,
there may be special issues in cancer patients, particularly with tol-
erability, drug interactions, and time frame for onset of action.
Cancer-related symptoms such as fatigue, nausea, pain, cachexia,
and hot flashes might also be relieved by some psychotropic medica-
tions. However, almost all of these uses are off-label and not approved
by the FDA. The increasing interest in cancer-related symptom
management may lead to the accumulation of clinical trial data that
support the use of some of these agents. Until then, clinicians must
weigh the impact of the potential benefits against the potential side
effects. Some of these symptoms may not have standards treatments,
and a medication trial may represent some possible relief.
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Med. 2000;76:303.
15. Kelly CM, Juurlink DN, Gomes T, Duong-Hua M, Pritchard KI.
Selective serotonin reuptake inhibitors and breast cancer mortality in
women receiving tamoxifen:a population based cohort study. BMJ.
2010;340:c693.
16. Lohr L. Chemotherapy-induced nausea and vomiting. Cancer J.
2008;14(2):8593.
17. Elsayem A, Curry IE, Boohene J. Use of palliative sedation for intrac-
table symptoms in the palliative care unit of a comprehensive cancer
center. Support Care Cancer. 2009 Jan;17(1):5359.
18. Barbera J, Shapiro C. Benefit-risk assessment of zaleplon in the treat-
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19. Griffith RR, Wolf B. Relative abuse liability of different
benzodiazepines in drug abusers. J Clin Psychopharmacol.
1990;10:237243.
20. Lann MA, Molina DK. A fatal case of benzodiazepine withdrawal.
Am J Forsensive Med Pathol. 2009;30:177179.
21. Lower E, Fleishman S, Cooper A, etal. A phase III, randomized
placebo-controlled trial of the safety and efficacy of d-MPH as new
treatment of fatigue and chemobrain in adult cancer patients. Asco
Annual Meeting. 2005. (Abstract 8000).
22. Minton O, Stone P, Richardson A, etal. Drug therapy for the
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23. Daly BP, Brown RT. Scholarly literature review:management of neu-
rocognitive late effects with stimulant medication. J Pediatr Psychol.
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24. Sood A, Barton DL, Loprinzi, CL. Use of methylphenidate in patients
with cancer. Am J Hosp Palliat Care. 2006;23(1):3540.
25. Prommer E. Modafinil:is it ready for prime time? J Opioid Manag.
2006;2(3):130136.
26. Pascal JP, Morrow GR, Roscoe JA, etal. A phase 3 randomized,
placebo-controlled, double-blind, clinical trial of the effect of
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chemotherapy. Cancer. 2010; 116(14):35133520.
27. Moraska A, Sood A, Dakhil S, etal. A phase III, random-
ized, double-blind, placebo-controlled study of long-acting
methylphenidate for cancer-related fatigue:North Central
Cancer Treatment Group NCCTG-N05C7 Trial. J Clin Oncol.
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28. Dubovsky AN, Arvikar S, Stern TA, Axelrod L. The neuropsychiat-
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32. Breitbart W, Alici Y. Evidence-based treatment of delirium in
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 SECTION X
Evidence-Based
Interventions
53 Principles of Psychotherapy
E. Alessandra Strada and Barbara M.Sourkes
54 Healthcare Provider Communication:
The Model of Optimal Therapeutic
Effectiveness
Harvey Max Chochinov and Heather Campbell-Enns
55 Supportive Psychotherapy and Cancer:
ANew Model for an Old Therapy
Marguerite S.Lederberg, MindyGreenstein,
and Jimmie C.Holland
56 Cognitive and Behavioral Interventions
Barbara L.Andersen, CarolineS.Dorfman,
and Neha Godiwala
57 Cognitive Therapy
Stirling Moorey and MaggieWatson
58 Self-Management Support
Dena Schulman-Green, EdwardH.Wagner,
and Ruth McCorkle
59 Building Problem-Solving Skills
Arthur M.Nezu, Christine MaguthNezu,
and Kristin E.Salber
60 Meaning-Centered Psychotherapy
Wendy G.Lichtenthal, Allison J.Applebaum,
and William S.Breitbart
61 Dignity in the Terminally Ill:Empirical
Findings and Clinical Applications
Harvey Max Chochinov and Maia S.Kredentser
431 62 Managing Cancer and Living
Meaningfully (CALM) Therapy 487
Sarah Hales, Christopher Lo, and GaryRodin
63 Mindfulness Meditation and Yoga
437 for Cancer Patients 492
Linda E.Carlson
64 Art and Music Therapy 497
443 Paola M.Luzzatto and LucanneMagill
65 Religion/Spirituality and Cancer:
ABrief Update of Selected Research 503
449 Andrea L.Canada and George Fitchett
66 Integrative Oncology 509
Alejandro Chaoul, Gabriel Lopez, Richard Tsong Lee,
458 M. Kay Garcia, Moshe Frenkel, and LorenzoCohen
67 Physical Activity and Exercise
464 Interventions in Cancer Survivors 515
Kerry S.Courneya, Jennifer J.Crawford,
and Scott C.Adams
470 68 Acceptance and Commitment
Therapy (ACT) for Cancer Patients 521
Nick Hulbert-Williams and RayOwen
475 69 Psychosocial Interventions for Couples
and Families Coping with Cancer 526
Talia I.Zaider and David W.Kissane
70 Supportive-Expressive and Other Forms of
480 Group Psychotherapy in Cancer Care 532
David W.Kissane and CatherineNgan
 CHAPTER53
Principles of Psychotherapy
E. Alessandra Strada and Barbara M.Sourkes
INTRODUCTION
A diagnosis of cancer challenges patients and families emo-
tional, cognitive, spiritual, and interpersonal domains of func-
tioning. As a result, comprehensive oncology care includes
careful and ongoing consideration of patients overall coping
skills and their existential and psycho-spiritual well-being. The
growing number of psychological interventions developed and
implemented for patients with cancer and their families are
based on different theoretical frameworks, but they share atten-
tion to clinical issues related to patient assessment, delivery,
process, content, and outcome. Psycho-oncology professionals
should consider how their interventions can be adapted to meet
patients needs during the different phases of illness and transi-
tions of care, including palliative and end-of-life care. The most
utilized individual and family psychotherapy approaches are psy-
chodynamic, supportive-expressive, and cognitive-behavioral.
Research-based and time-limited models, such as dignity therapy
and meaning-centered psychotherapy, are supported by increas-
ing evidence, and their application is beginning to extend to com-
munity settings. Elements of integrative therapy approaches, such
as mindfulness, relaxation, imagery, and hypnosis, can be incor-
porated by clinicians as part of their treatment approach.
This chapter will review and discuss essential principles of
psychotherapy that should be considered in every approach and
throughout the continuum of illness. The discussion addresses
patient selection, conceptual framework, setting, goals and objec-
tives, the therapeutic relationship, cultural considerations, trans-
ference and countertransference, and termination.
RECOGNIZING AND MEETING
PATIENTSNEEDS
Patients emotional responses are significantly impacted by
the stage of disease at time of diagnosis and the availability of
disease-modifying treatments. The ability to recognize the psy-
chological implications of each phase of the illness, as well as those
related to various types and sites of cancer, will allow therapists
to meet patients and families evolving needs. For example, it is
well known that pancreatic cancer is frequently associated with
depression. Similarly, head and neck cancers can have profound
negative impact on patients self-esteem due to the disfigurement
that frequently follows treatment. Additionally, therapists should
be familiar with the range of potential medical interventions at
different stages of illness. This knowledge will allow them to func-
tion as effective members of the healthcare team and to be able to
fully understand patients concerns, assess their understanding of
their medical condition, and support them in the decision-making
process regarding treatment.1
Psychological interventions in cancer care can be conceptual-
ized as a continuum, along which treatments are differentiated
on the basis of structure, frequency, and depth. Supportive psy-
choeducation, at one end of the continuum, maintains a focus on
the present and on the development of skills that can be used by
patients to decrease stress, process normal grief reactions, improve
interpersonal communication, and enhance overall quality of life.
It may include health education, stress management, and teaching
coping skills to newly diagnosed patients. It maintains a strong
focus on the here and now of the patients reality and usually
does not address past experience or old conflicts. Supportive psy-
choeducation does not necessarily require a formal setting or a
structured treatment plan. In essence, all communication with
patients that involves delivery of information and suggestion of
practical strategies to better understand and cope with the disease
can be described as supportive psychoeducation.
Counseling is a short-term approach, appropriate for individu-
als who wish to focus on improving their problem-solving ability
and coping skills. As in psychoeducation, counseling is primarily
focused on the present, with the individual and counselor work-
ing toward achieving concrete goals. While counseling may occa-
sionally identify and address deeper issues in the patients life, it
does not commonly address defense mechanisms, intrapsychic
conflicts, or significant psychopathology. The frequency of both
supportive psychoeducation and counseling sessions may vary,
depending on patients needs.
Psychotherapy involves a specific theoretical framework and
structure, and targets patients with or without prior or current
psychiatric history and symptoms. The various approaches all
emphasize common elements: the importance of the therapeu-
tic alliance; a setting where the therapy takes place; an explana-
tory model for the patients symptoms and distress; a therapeutic
approach aimed at exploring and understanding the patients
intrapsychic functioning, resolving psychopathology when pres-
ent, and improving psychological well-being. The psychothera-
peutic process enables movement between past, present, and
future in a therapeutic flow that captures relevant elements of the
patients experience, while maintaining a cohesive sense of his
or her life narrative. Depending on the patients unique needs,
432 Section X evidence-based interventions
psychotherapy may include elements of supportive education and
counseling, but its general framework is broader, encompassing
the entire experience of the patients storyline. It must be pointed
out that not all therapists believe that there is a difference between
counseling and psychotherapy. As a result, the two terms are some-
times used interchangeably. Still, most therapists would agree that
different psychotherapeutic interventions target symptoms to
a various degree of depth. It is important that the intervention
offered matches the individuals degree of distress, energy level,
capacity for introspection, and expressed goals. Furthermore, the
patients length of stay in the clinic or hospital will also affect the
focus and depth of the intervention.2,3
During the initial meeting, the patients and familys needs
are evaluated in the context of the patients medical condition,
including prognosis (whether acknowledged explicitly or implic-
itly). Assessment of the patients ability to assimilate and integrate
the diagnosis of cancer reveals the patients coping skills, defense
mechanisms, risk tolerance, and willingness to explore the emo-
tions elicited by the diagnosis or progression of illness. Patients and
families responses are deeply influenced by psychological makeup,
personal history, previous experience with illness and the medical
system, individual grieving style, as well as cultural and psycho-
social factors. Family dynamics and adequacy of support network
are also evaluated. In the psychooncology setting, the therapist is
often faced with the challenge of quickly establishing rapport with
the patient in order to evaluate needs and level of urgency, and to
establish realistic goals of psychological treatment.4
The conceptualization and goals of psychological treatment
evolve with the patients medical condition and related emo-
tional needs. In general terms, when patients are diagnosed
with illness at early stages with a prospect for cure, psychologi-
cal treatment may initially focus on managing anxiety related to
the diagnosis; facilitating decision-making and problem-solving
as considerations about treatment are made; promoting family
communication; assisting with management of treatment adverse
effects; and improving overall coping. Depending on their psy-
chological makeup, patients may develop existential concerns and
meaning-related questions elicited by the diagnosis. This is com-
mon even when the prognosis is good. Psychotherapy provides
the space where such complex explorations can take place. Thus,
while addressing immediate and practical concerns of a psycho-
logical nature, psychotherapy is not necessarily a task-oriented
intervention. In those cases when a diagnosis of advanced illness
is received, with limited options for disease-modifying treat-
ments, patients may face significant difficulty controlling anxiety
and maintaining emotional well-being. Fear of the implications
of advanced illness, including fear of death, may surface and elicit
spiritual and existential concerns, as well as significant distress.
Thus, the goals of psychotherapy may then become broader, with
a focus that fluctuates between very specific and immediate needs
(e.g., processing decisions about treatment and goals of care) and
larger psychological and existential needs (e.g., processing issues
related to meaning, legacy, preparatory grief).
ADOPTING AFLEXIBLE FRAMEWORK
Providing psychotherapy to patients with cancer requires the
therapist to adopt a flexible framework. The basic structure of
the therapy may be impacted by the patients health status, the
patients relationship with family and caregivers, as well as system
issues related to the delivery of care. Adiagnosis of cancer affects
not only the patient, but the entire system around the patient,
including family and support network, with the potential to desta-
bilize family dynamics and the equilibrium of relationships. As
the illness progresses, the need to include other family members
or caregivers in the session may become more prominent. Patients
may ask the therapist for assistance communicating with chil-
dren, spouses, and other family members. The therapist may also
be asked to participate in discussions regarding goals of care with
medical providers. Planning for a formal family session to address
specific needs may be challenging, especially when patients ill-
ness is advanced and their medical condition and ability to engage
in therapy may decline rapidly. Therefore, therapists should be
able to widen the therapeutic contract and include family mem-
bers in treatment, even on a moments notice, if the patient so
requests. Opening the therapy session to a family member does
not necessarily mean that the treatment approach is no longer
individual. Rather, the therapist should spend some time with the
patient beforehand, clarifying which issues will be discussed in
the contest of the family session, and to what degree of depth. 5
A flexible contract raises challenges for the therapist in main-
taining the highest ethical standard of confidentiality. Pertinent
although limited information regarding the patients adjustment
level and emotional functioning may be shared with other team
members. For example, if symptoms of depression or anxiety
develop, pharmacological management may be necessary in con-
junction with psychotherapy. It is important that the therapist dis-
cusses with the patient what content or symptoms should be shared
with the medical team. Psycho-oncology professionals working in
a hospital or clinic setting must use their clinical judgment when
deciding how detailed their notes should be, especially when other
professionals will have access to them. In cases when patients do
not want specific details about their past history to be documented
(e.g., trauma), the therapist can document the psychotherapy in
general goals of providing support and improving coping.6,7
The goals of therapy that are negotiated between the therapist
and patient at the beginning of the relationship may change sig-
nificantly over time. In the immediate aftermath of the diagnosis,
many patients benefit from help in adjusting to the diagnosis and
coping with treatment. They may need assistance in processing
grief, exploring the meaning of the illness, relieving symptoms
of depression and anxiety, and communicating effectively with
family members and significant others. Some patients develop an
intense fear of death, regardless of disease severity, as soon as they
hear the word cancer and choose to address their fears in therapy.
Other patients prefer to adopt a very pragmatic problem-solving
approach and tend to avoid expressing deeper emotions and fears.
It is important that the therapist allow the patient to take the lead
in the therapeutic process, constantly assessing for the need for
more direct interventions. This becomes urgently important for
patients who develop increasing anxiety, suicidal ideation, and
major depression.810
PSYCHOTHERAPY CASE FORMULATION
The delivery of both short and long-term psychotherapy often
requires a comprehensive case formulation of the underlying
causes of the patients difficulty. This conceptualization provides

both theoretical and clinical understanding of the psychological
diagnosis and a guide to treatment. Many individuals with cancer
who receive psychotherapy do not meet the criteria for a formal
psychiatric diagnosis. However, careful conceptualization that
can be shared with the entire team facilitates the implementation
of a treatment plan that addresses the patients goals.11
Several aspects of case formulations have been identified:12
integrative, explanatory, prescriptive, predictive, and therapist.
According to this model, a case formulation highlights and sum-
marizes the most important clinical issues faced by the patient, as
well as context-related stressors that have a direct impact on the
patients well-being (integrative); helps to understand the develop-
ment of symptoms in patients and caregivers by examining the
patients life narrative and how this has been affected by the diag-
nosis and presence of the cancer (explanatory); guides treatment
and addresses goal setting and treatment plan (prescriptive); and
allows for evaluation and redirection of treatment (predictive).
The therapist component addresses the nature of the therapeutic
relationship. Identifying, understanding, and addressing ruptures
that may negatively affect the therapeutic alliance is an essential
component of treatment. The therapeutic relationship becomes a
microcosm where past, present, and future converge and allow the
patient the opportunity to develop awareness of patterns, defenses,
and needs. Within the therapeutic relationship, the patient has
the opportunity to safely explore and experience different ways of
being that are more authentic manifestations of the self.
A therapist was significantly late for a scheduled therapy session in
the patients hospital room. As the therapist began to apologize, the
patient quickly dismissed the event with a smile, reassuring the thera-
pist. During the session, though, the patients affect was detached,
and her involvement superficial. This was uncharacteristic for this
patient. At one point the therapist commented, I am not sure if it is
me, but Iam feeling emotionally distant from you, right now. This is
unusual for us, in session. Iam wondering if you are having the same
experience. Iam also wondering how my being late affected the sense
of safety of our session. After a pause, the patient became tearful and
admitted feeling angry with the therapist for being late, and feeling
like she was irrelevant, with no control whatsoever over how things
are going in my life. Adeeper exploration revealed the patients feel-
ings that time is running out and Iam here waiting for things to
happen, waiting for people to visit me, waiting for doctors to help me.
Before Iknow it Iwill be waiting to die. Waiting for the therapist to
appear for the session without information about her whereabouts
contributed to her feeling of having no control over her life. With this
new insight about her relationship with time and sense of control,
the therapy refocused on developing strategies to increase her sense of
agency and ability to affect the outcome of events around her.
CULTURAL COMPETENCE AND
SENSITIVITY IN PSYCHOTHERAPY
Simply applying Western psychotherapeutic approaches to cul-
turally diverse patients without an understanding of their back-
ground and worldview will negatively impact the therapeutic
alliance and outcome. A good therapeutic alliance is the main
predictor of patients compliance with treatment, regardless of the
therapists theoretical framework or ethnicity. Accordingly, the
Chapter53 principles of psychotherapy 433
therapists ability to negotiate these differences without minimiz-
ing or trivializing them is often crucial in determining whether
the patient will continue treatment. In a larger sense, every psy-
chotherapeutic encounter is cross-cultural. Even when patient and
therapist belong to the same racial or ethnic group, their personal
worldview is shaped by unique elements, such as family and com-
munity, as well as spiritual and religious beliefs. Therefore, psy-
chotherapy should always include a thorough exploration of the
patients worldview, the patients explanatory model for the illness,
and specific cultural elements that may affect decisions about med-
ical treatment. Research has demonstrated the need for therapists
to develop generic and specific cultural competence. Generic com-
petence refers to qualities and skills that are necessary any time a
therapist works with a patient, whether from a different cultural
background or one similar to the therapists. Atherapist who has
developed generic cultural sensitivity will not assume that appar-
ent similarities in cultural backgrounds necessarily translate into
similarity of values and practices. Specific cultural competence
refers to the therapists knowledge and understanding of the par-
ticular culture to which the patient belongs. The ways in which
patients integrate a cancer diagnosis, make meaning of their diag-
nosis, and conceptualize how and why the illness was developed
is culturally determined. Asense of curiosity, freshness, and deep
respect for the patients cultural values and practices will allow the
therapist to promote therapeutic alliance and increase the likeli-
hood of obtaining positive outcomes.13,14
THE THERAPEUTIC SETTING
Time
In a traditional outpatient psychotherapy framework, sessions
occur usually at the same time on the same day of the week. This
structure allows for better containment of the psychotherapy pro-
cess. Additionally, while patients lives may often be characterized
by significant unpredictability, maintaining a clear structure in
psychotherapy allows patient and therapist to create a therapeu-
tic space relatively unaffected by outside changes. This element, in
itself, may have a calming influence on the patient and may allow for
an improved sense of control. Controlling time becomes increas-
ingly challenging if the patients illness progresses and hospital-
izations occur. The need to adapt to the schedule of an inpatient
unit may alter the appointment time, even if the therapist works
in the same hospital where the patient is being treated. Informing
the hospitalized patient of any changes in the schedule can help
control the patients anxiety, especially if the illness worsens and
the emotional environment becomes more ambiguous and fearful.
Engagement in the Therapeutic Process
Patients with advanced illness may experience fatigue, pain, and
other distressing symptoms that may interfere with their ability to
concentrate and interact with the therapist. Additionally, they may
experience physical and psychological withdrawal, progressively
or sometimes suddenly losing interest in the content of the psy-
chotherapy session. Experienced clinical assessment is required
to differentiate this withdrawal, common in advanced illness and
end of life, from clinical depression. Asking the patient about
the presence of depression can be appropriate in this context. It
is not uncommon for patients to say they do not feel depressed,
434 Section X evidence-based interventions
but rather are less interested in engaging in the outside world.
Asking patients how they feel about their level of disengage-
ment and whether they would like to feel more energetic is also a
helpful assessment tool. If patients report that they would like to
have more physical and emotional energy to continue interacting
with family and other caregivers, consideration should be given
to behavioral strategies and psychotropic medication to improve
mood and energy levels, if appropriate for the patient. If, however,
patients report that they feel comfortable with their decreased
level of engagement and report being peaceful, the therapist may
support this process and facilitate the familys understanding of
this natural evolution of the patients psyche.
Physical Space
As long as patients are ambulatory and can physically go to the
therapists office, a certain level of immutability in the physical
space can be achieved. As illness progresses and patients spend
more time in the hospital, the physical space of the therapy ses-
sion may change repeatedly. Dealing with the instability of the
therapeutic setting can be burdensome for the patient and thera-
pist. The therapist can facilitate this process by noting that unpre-
dictability of the setting is expected. Additionally, the therapist
should emphasize the primary importance of the stability of their
relationship. Accordingly, continuity of treatment takes prece-
dence over immutability of the physical space. The session can
take place in various locations, including the chemotherapy infu-
sion suite, the examination room of a palliative care clinic, the
hospital room, the patients home, or the inpatient hospice setting.
The literature and clinical experience suggest that psychotherapy
interventions at the bedside can effectively provide patients with
needed support.15,16
THERAPEUTIC CONTENT AND PROCESS
A diagnosis of life-limiting illness will often create a heightened
sense of awareness of the importance of time, both in the therapist
and the patient. The theme of time itself, with associated questions
related to the course of the disease, may dominate the focus of the
sessions. Psychotherapy provides patients with a space where pres-
ent, past, and future can be perceived separately or in a framework
based not only on the here and now but on a parallel dimension of
intrapsychic reality. In such space, patients can hold both the aware-
ness of probable or imminent death and hope for cure. Sometimes
patients need permission to hold both a life narrative and a death
narrative and will test the therapists experience and personal level
of comfort and skill accepting both temporal dimensions.17
The themes of separation, loss, and grief are also often closely
related to the theme of time. As the therapist allows these themes
to unfold during the session, following the patients lead, there is
an opportunity to explore the patients personal grieving style and
personal history of loss. The balanced combination of supportive
psychotherapy, timely interpretation, and careful assessment will
allow the therapist to identify patients at risk for the development
of complicated grief, major depression, or anxiety. Apatients per-
sonal grieving style is the result of long-standing cultural, famil-
ial, and more general interpersonal patterns that can originate
with the first exposure to death. Subsequent exposure to other
grieving styles exhibited by important figures in the patients life
will also affect how patients process loss and separation.18
In recent years, significant attention has been given to the
importance of existential and spiritual themes for the process
of making meaning of the experience of illness. As they are now
widely recognized as having a fundamental impact on patients
adaptation to illness, therapists need to recognize the potential
importance of exploring existential and spiritual aspects of the
patients intrapsychic reality.
Psychotherapy for patients with serious and advanced illness
necessitates providing a literal and symbolic container where
expectations, perceptions, fears, and anxieties can be safely
expressed by the patient. However, during the psychotherapeutic
relationship, patients may never utter the word cancer or death.
This should not be necessarily interpreted by the therapist as a sign
of unhealthy denial or lack of coping. Clearly, a skilled therapist
would want to gently explore the patients level of awareness, and
how decisions about communication regarding the disease are
supportive or unsupportive of the patients therapeutic process.
An important aspect of psychotherapy with patients who have
cancer is that it is aimed at preserving life, even as the illness
progresses.19 From the original Latin meaning, preserving life in
the context of patients with cancer means safeguarding them from
psychological harm, helping them adjust to the diagnosis and cope
with the illness, and fostering healing and growth. It should be rec-
ognized that certain patients may exhibit what could be described
as self-directed disclosure, or acceptance.4 In this self-directed
process, patients may have an internal and clear awareness of the
severity of their prognosis and, at the same time, might decide not
to discuss this awareness in explicit terms. Whether this approach
is deleterious to the patients psychological well-being should be
assessed in the context of the therapeutic relationship.
THE THERAPEUTIC RELATIONSHIP
In the midst of the illness narrative, the relationship with the ther-
apist should bring a sense of stability and safety in the patients life.
With illness threatening many aspects of life, including the very
sense of body integrity and survival, the stability and predictability
of the relationship with the therapist can promote a sense of hope.
A hospitalized patient heard from his therapist that she would be
away for a week at a conference. In an attempt to express his deep
disappointment he stated, I feel as if Iwere on a sinking ship, and
the life vest has just been taken away from me.
Transference
In traditional psychodynamically oriented psychotherapy, trans-
ference is the primary vehicle of communication and explora-
tion between the therapist and the patient and is regarded as not
limited by the constraints of real time and space. Once concep-
tualized exclusively as a projection of the patients development
and ego function, it is now understood as a result not only of the
patients feelings, but also of the therapists countertransference.
Countertransference
The term countertransference refers to the collection of feelings
and emotional reactions evoked in the therapist during the course
of the therapeutic relationship. It is the result of the patients
behavior, the therapists past or current situation, or, most often,

by a combination of the three. Fear of death and feelings related
to loss and bereavement are commonly experienced by patients
at various stages of the illness and can often represent most of
the content of the session. Working with certain individuals, or
those with certain diagnoses, may be more emotionally challeng-
ing than others. The quality and intensity of the emotions devel-
oped in the therapist are often modulated by the losses and deaths
experienced and the degree to which grief has been processed. If
the patients illness progresses during the course of therapy and
the patient wishes to explore thoughts, emotions, and fantasies
related to the approaching death, the therapist must be able to
provide a meaningful therapeutic container. The importance of
self-awareness for therapists cannot be emphasized enough. It will
allow therapists to recognize, identify, and label countertransfer-
ence. Countertransference that is not recognized or processed will
likely be acted out in the session, negatively affecting the thera-
peutic alliance and treatment goals. If the therapist experiences
strong feelings of distress working with a particular patient, seek-
ing peer consultation and possibly supervision may be crucial.
This may allow the therapist to manage countertransference with-
out the need to refer the patient, and thus avoid evoking feelings
of abandonment.20,21
Termination
The end of treatment is a crucial and delicate part of every thera-
peutic relationship and process. Psychotherapy interventions
based on a time-limited approach may be more likely to offer
both patient and therapist the opportunity to review the work
done and to say good-bye, thus openly acknowledging the end of
the therapeutic relationship. This scenario allows reviewing the
work done together and acknowledging the completion of that
particular therapeutic relationship. When psychotherapy is pro-
vided within a long-term model, it may start at any point dur-
ing the course of the patients illness, and it may continue until
the patients death. Working with patients with cancer, especially
those with advanced disease, implies that unplanned interrup-
tions may occur at any point, and the end of treatment may be
relatively abrupt. The patient may die suddenly, or may be trans-
ferred to a different facility. Thus, the ability to effectively direct
or process the end of therapy with a cancer patient challenges the
therapists clinical experience, judgment, and intuition.22
Therapist and patient may be aware and openly acknowledge
that the sadness they are experiencing is not only the result of
the end of the therapeutic relationship, but also due to the shared
awareness that the patient may not likely survive the disease.
While the awareness of the progressive decline of the patients
health may prompt the therapists desire to begin saying good-bye
to the patient, clinical experience suggests that this process should
not be started or imposed on the patient who is not ready. If the
patient appears unwilling or unable to share any negative emo-
tions related to the end of the relationship, the therapist should
respect this choice. However, the therapist may express his or her
feelings, modeling the expression of emotions for the patient. The
patient may or may not choose to follow the therapists implicit
invitation to share feelings of sadness. Thus, for example, a thera-
pist may gently raise the issue by saying, I have been thinking
about what it would be like for us to say good-bye. The patient
may decide to accept or ignore the invitation, and it is essential
that the therapist respect the patients boundaries. In this context,
Chapter53 principles of psychotherapy 435
terminationwhether due to the end of therapy or to the end of
the patients lifemust follow the same principle of preserving the
integrity of the patients emotional life, safeguarding him or her
from suffering.2325
SUMMARY
Patients with cancer often present a unique situation for thera-
pists, because of the uncertainties of their life span and the pro-
found emotional and physical impact of their diagnosis and
medical treatment. Therapists with extended knowledge of both
theory and practice of individual psychotherapy can help patients
and their caregivers cope with the diagnosis and progression of
the illness, promoting healing and growth. The presence of profes-
sionally trained therapists, expert in the assessment and provision
of individualized interventions, represents an invaluable asset for
institutions that treat patients with cancer. Aflexible theoretical
framework will allow the therapist to adapt the therapeutic model
to the changes in setting often imposed by the clinic or hospital
environment. Working with patients who have cancer can be
emotionally very demanding, especially as the illness progresses
and they may approach death. Such emotional intensity can elicit
strong feelings in the therapist, who may develop death anxiety,
fear, desire to protect and save the patient, or avoidance of the
patient. Awareness and adequate management of countertrans-
ference through peer consultation and supervision can allow the
therapist to minimize the negative impact of such feelings on the
therapeutic relationship and allow it to continue to be a predict-
able and supportive element in the patients life.
As they accompany patients during their difficult journey, ther-
apists will need to mobilize skills and sensitivity in complex set-
tings that will test their tolerance for ambiguity and their ability to
offer predictable, skillful, and compassionate presence.
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1. Benedict C, Penedo JF. Psychosocial interventions in cancer. In:Carr
BI, Steel J, eds. Psychological Aspects of Cancer (pp. 221250).
NewYork:Springer; 2013.
2. Ledeberg MS, Holland JC. Supportive psychotherapy in cancer
care:an essential ingredient of all therapy. In:Watson M, Kissane D,
eds. Handbook of Psychotherapy in Cancer Care (pp. 314). Hoboken,
NJ:John Wiley & Sons; 2011.
3. Prochascka JO, Norcross JC. Systems of Psychotherapy:ATranstheore
tical Analysis. Stamford, CT:Cengage Learning; 2013.
4. Strada EA. The Helping Professionals Guide to End-of-Life Care.
Oakland, CA:New Harbinger, 2013.
5. Strada EA. Psychology in Palliative Care. NewYork:Oxford; in press.
6. Sourkes BM. The Deepening Shade:Psychological Aspects of
Life-Threatening Illness. Pittsburgh:University of Pittsburgh Press;
1982.
7. Younggren JN, Harris EA. Can you keep a secret? confidentiality in
psychotherapy. J Clin Psychol. 2008;64(5):589600.
8. McGoldrick M, Walsh F.Death and the family cycle. In:Carte B,
McGoldrick M, eds. The Expanded Family Life Cycle:Individual,
Family, and Social Perspectives (Pp. 346361). Needham Heights,
MA:Allyn and Bacon; 1999.
9. Strada EA. Grief and Bereavement in the Palliative Care Setting.
NewYork:Oxford; 2013.
10. Akechi T, Okuyama T, Onishi J, Morita T, Furukawa TA.
Psychotherapy for depression among incurable cancer patients
(Review). Cochrane Collab. 2008.
11. Eels TD, ed. Handbook of Psychotherapy Case Formulation, 2nd ed.
NewYork:The Guilford Press; 2007.
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12. Sim K, Peng Gwee K, Bateman A. Case formulation in psycho-
therapy:revitalizing its usefulness as a clinical tool. Acad Psychiatry.
2005;29(3);289292.
13. Lo HT, Fung KP. Culturally competent psychotherapy. Can J
Psychiatry. 2003;48(3):161170.
14. Sue DW. Counseling the Culturally Different:Theory and Practice, 6th
ed. NewYork:John Wiley and Sons; 2013.
15. Omer H. Troubles in the therapeutic relationship:a pluralistic per-
spective. J Clin Psychol. 2000;56(2):201210.
16. Griffith JL, Gaby L. Brief psychotherapy at the bedside:coun-
tering demoralization from medical illness. Psychosomatics.
2005;46(2):109116.
17. Lee V, Robin Cohen S, Edgar L, Laizner AM, Gagnon AJ.
Meaning-making intervention during breast or colorectal cancer
treatment improves self-esteem, optimism, and self-efficacy. Soc Sci
Med. 2006;62(12):31333145.
18. Counselman EF, Alonso A. The ill therapist:therapists reactions to
personal illness and the impact of psychotherapy. Am J Psychother.
1999;47(4):591602.
19. Strada, EA. Preserving life at the end of life:shifting the
temporaldimension of hope. Palliat Support Care. 2008 Jun;6(2):
187188.
20. McWilliams N. Psychoanalytic Diagnosis:Understanding
PersonalityStructure in the Clinical Process. NewYork: The Guilford
Press; 1994.
21. Reis BF, Brown LG. Reducing psychotherapy dropouts:maximiz-
ing perspective convergence in the psychotherapy dyad. Psychother
Theor. 1999;36:123136.
22. Vasquez MJ, Bingham RP, Barnett JE. Psychotherapy termi-
nation:clinical and ethical responsibilities. J Clin Psychol.
2008;64(5):653665.
23. Goldie L. Psychotherapy and the Treatment of Cancer Patients.
NewYork:Routledge; 2005
24. Gabbard GO. Long-term Psychodynamic Psychotherapy, 2nd ed.
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2003;21:253265.
 CHAPTER54
Healthcare Provider
Communication
The Model of Optimal
Therapeutic Effectiveness
Harvey Max Chochinov and Heather Campbell-Enns
In order to understand the workings of the human body, clini-
cians are obliged to begin their training with meticulous ana-
tomical dissection. Without being fully aware of anatomical
structures, it is simply not possible to make sense of human
physiology or to delve into the complexities of pathophysiology
and how diseases manifest themselves. While the area of health-
care provider-patient communication requires skills that are
no less complex than these physical domains of clinical medi-
cine, the approach to learning communication skills tends to
be far less rigorous and even lackadaisical.1 There is a paucity of
evidence-based training in communication, leaving clinicians
reliant on intuition, and trial and error; those who are most for-
tunate have role models whose bedside manner are worthy of
emulating.2,3
There is no doubt that poor communication skills can add to
patient suffering and interfere with optimal medical outcomes.
The inability to communicate effectively can undermine trust,
cause patients to withhold delicate information, and interfere
with being able to clarify goals of care.1,46 With greater chance
for medical misadventure, patient and family dissatisfaction, and
even risk of litigation, the area of communication and communi-
cation skill training demands a greater profile, along with serious
and methodical examination.4,7,8
This chapter offers a unique approach to understanding com-
munication, specifically communication between healthcare
providers and their patients confronting cancer-related distress.
Like other areas of medicine, this chapter will offer an approach,
based on the equivalent of a detailed and methodical anatomical
dissection, yielding a model of optimal therapeutic effectiveness.
Elements of communication and how to communicate effectively
were carefully unraveled and deconstructed through the process
of empirical research. The resulting model is meant to help clini-
cians enhance their practice. It is also meant to be a pedagogical
tool, offering insight regarding what it means, and what it takes,
to achieve optimal therapeutic outcomes when caring for patients
with cancer-related distress.
BACKGROUND FOR CREATING AMODEL
Emotional distress in the context of cancer may include a diverse
range of feelings, including hopelessness, dependency, loss of con-
trol, uncertainty, worries about the future, concerns about being
a burden to others, and loss of dignity.911 These feelings are all
too common for individuals living with cancer; in fact, 20%50%
of patients with cancer will experience substantial distress at
some point during their disease trajectory.12,13 Fortunately, emo-
tional distress can often be alleviated with quality psychosocial
care.10,14,15 Despite this, there has been a paucity of research exam-
ining the constituents of therapeutic effectiveness in the context
of cancer-related distress. There has been some research, based
on small samples of expert informants, which elicits counseling
competencies,16,17 but these studies have not focused on the skills
required to perform this work within medical populations.18,19
The research presented in this chapter seeks to address this gap, by
identifying the elements of therapeutic effectiveness, informed by
a large sample of psychosocial oncology clinicians from multiple
health centers across Canada, and create an empirical model of
therapeutic effectiveness for healthcare provider communication.
Further details of this research can be found elsewhere.20
INVESTIGATING ELEMENTS OF
COMMUNICATION
After receiving ethical approval from the Health Research Ethics
Board at the University of Manitoba, clinicians were contacted
across 21 Canadian cities and 24 healthcare centers in order to
examine how healthcare providers approach, and effectively
communicate with, distressed patients living with cancer. For
healthcare providers to be eligible to participate, they needed to
be engaged in psychosocial work with cancer patients. They were
invited to attend three focus groups approximately six months
apart. Seventy-eight clinicians participated in these focus groups,
where they discussed and shared reflections regarding how they
438 Section X evidence-based interventions
address patient distress in their therapeutic encounters. All focus
groups were audiotaped and transcribed. Arange of clinical expe-
riences were shared during the focus group, with healthcare pro-
viders describing in detail what happens during their time with
patients, that is, not only what is said, but describing the emo-
tional tone of the session: how it personally feels to be in that
clinical space, and what skills are invoked to assuage distress.
Participants were also asked to provide detailed clinical examples
to illustrate each of these, as they emerged during the course of
the clinical encounter. Healthcare providers were also asked to
reflect on and share what qualities they brought to the encounter,
and how these facilitated, or impeded, patient disclosure; and how
they understood and managed both the patients, as well as their
own, responses and feelings.
Key themes from each focus group were identified by the study
investigators, using content analysis and constant comparative
techniques.21 Summaries of the themes and illustrations from the
focus group transcripts were then distributed to the focus group
participants prior to their second and third focus group sessions.
In this way, the participants ensured the trustworthiness of the
analysis and facilitated further discussion. The study investigators
then continued to analyze the data, reducing 155 initial themes to
47 broad, summative themes. Definitions of the themes were writ-
ten and, through the examination of commonalities and differ-
ences, the investigators placed the themes into a larger framework,
resulting in the Model of Optimal Therapeutic Effectiveness. After
the model was created, face-to-face workshops were held in eight
cities, with over 80% of the focus group participants attending in
order to evaluate and critique the overall model, and its constitu-
ent themes and sub-themes. In the course of these workshops, two
additional themes were added to the analysis. Also, by way of vali-
dating the model, 83% of participants agreed or strongly agreed
that using it would enhance their understanding and ability to
address psychosocial distress; and 95% said it would enhance their
ability to teach others how to address psychosocial distress with
their patients/clients.
CLINICIAN INSIGHTS ON THERAPEUTIC
COMMUNICATION
The participants had a wealth of professional experiences and, on
average, over 17years of working in healthcare. They were rep-
resentative of the broad diversity of professionals who offer psy-
chosocial support in oncology settings, including social workers
(64%), physicians (11%), psychologists (8%), spiritual care pro-
viders (6%), nurses (6%), and others. As trust developed in the
focus groups, participants were increasingly willing to share their
deeply held personal insights, often including recollections of pro-
found emotional encounters with patients seeking their comfort
and advice. It was these conversations, and the analysis of focus
group transcripts, which led to the identification of various ele-
ments of effective therapeutic communication (see Table 54.1).
This, in turn, informed the creation of the Model of Optimal
Therapeutic Effectiveness.
This model (see Figure 54.1) comprises three primary domains
personal growth and self-care, therapeutic approaches, and cre-
ation of a safe place (domains A, B, and C in Figure54.1)and
three hybrid domainstherapeutic humility, therapeutic pacing,
and therapeutic presence (domains AB, BC, AC). When aspects
of these domains are invoked concurrently, optimal therapeutic
potential may be realized (domain ABC). Of course, even when
therapeutic responses have been exquisitely handled, and appro-
priate facets of the model invoked, optimal outcomes are not
always possible. That said, in the absence of mindful practice
and not paying attention to key elements of effective communica-
tionthe potential to achieve optimal therapeutic effect will be
profoundly limited.
PRIMARY DOMAINS
Domain A:Personal Growth and Self-Care
Thematic analysis showed that healthcare providers identified
their own mental well-being as a precondition for being thera-
peutically effective. They indicated that in order to achieve this
outlook, they needed to maintain a balanced life, to work at
self-awareness, and to be able to acknowledge their own fears
and helplessness. Working in a cancer setting exposes practitio-
ners to the reality that sickness, disability, and life-threatening
and life-limiting circumstances are part of the human condition,
and that, like their patients, they too are vulnerable. To maintain
emotional equanimity and engagement, clinicians indicated that
they required collegial support, ongoing professional develop-
ment, and openness to learning, particularly the capacity to be
self-reflective and to learn from personal and professional experi-
ences. Appreciating these existential insights and the outlook they
provide will inform and shape the clinicians therapeutic abilities
and responses.
Domain B:Therapeutic Approaches
Participating healthcare providers identified tasks, strategies, and
techniques they use to help them communicate with and support
patients experiencing distress. Together, these form a teachable
skill set, which are not hierarchical or mutually exclusive, in that
their application depends on the specific clinical situation. While
the model describes approaches that are specific to psychosocial
elements of care, therapeutic approaches can be thought of more
broadly as the mechanical or technical tasks that need to be per-
formed (e.g., performing a physical examination, ordering a test,
prescribing a treatment); they describe what we do to or with
patients, more so than the manner in which they are done.
Domain C:Creation of a Safe Space
Being able to create a safe space for patients is critical to enhancing
the likelihood of effective therapeutic work. Feelings of physical
and emotional safety and security can be enhanced when health-
care providers offer a therapeutic milieu that is calm, safeguards
privacy, and assures confidentiality.
HYBRID DOMAINS
When sorting themes for placement within the model, it became
apparent that many overlapped with more than one domain. For
instance, not avoiding emotion or being able to explore difficult
topics are things we do or approaches we take with patients; but
at the same time, these approaches require invoking aspects of the
clinicians own resilient and emotional maturity, that is, things
we would classify under personal growth and self-care. As such,
themes that appear at the interface between two major domains

Table54.1 The Model of Therapeutic Effectiveness:Domains and Themes
Primary Domains
A: Personal Growth and Self-Care
1. Maintain a balanced life
2. Work at self-awareness
3. Acknowledge/work through your own fears
4. Acknowledge your own feelings of vulnerability or helplessness
5. Debrief with colleagues
6 . Value professional development
B: Therapeutic Approaches
7. Clarify and name sources of distress
8 . Problem-solve
9. Educate, inform client
10. Debunk myths
11. Reinforce client strengths and positive ways of coping
12. Provide techniques (e.g., Mindfulness, Therapeutic Touch)
13. Advocate for client with the care team
14. Foster positive relationships between client and family
15. Elicit client needs
16. Probe for feelings underlying events and circumstances
17. Help client identify what they can and cannot control
18. Help client understand by mirroring and reflection
19. Use silence to encourage client expression
20. Explore image and metaphor
21. Offer comfort through touch
22. Acknowledge spiritual distress
C: Creation of a Safe Space
23. Provide privacy
24. Provide calming environment
25. Assure confidentiality
have been classified as hybrid domains (in the latter instance, the
hybrid domain overlapping therapeutic approaches [A]and per-
sonal growth and self-care [B] is therapeutic humility [AB]). Based
on all of the themes categorized within each hybrid domain, titles
were determined accordingly: therapeutic humility (AB), thera-
peutic pacing (BC), and therapeutic presence (AC).
Domain AB:Therapeutic Humility
Therapeutic humility is located within the model at the interface
between therapeutic approaches (what we do with patients) and
Chapter54 healthcare provider communication 439
Overlapping or Hybrid Domains
AB: Therapeutic Humility
26. Do not avoid emotion
27. Tolerate clinical ambiguity
28. Be able to explore difficult topics
29. Accept and honor client as expert
30. Be a catalyst for therapeutic change
31. Trust in the process
32. Sit with client emotional distress
33. Avoid urge to have to fix
34. Model healthy processing of emotion
BC: Therapeutic Pacing
35. Listen attentively
36. Hold or ground client
37. Keep client in the here and now
38. Maintain slow pacedo not rush therapy
39. Encourage client to talk about fear and distress
40. Normalize and validate client experience and distress
41. Use skillful tentativeness, i.e., be purposely hesitant to be non-threatening
AC: Therapeutic Presence
42. Being compassionate and empathetic
43. Being respectful and nonjudgmental
44. Being genuine and authentic
45. Being trustworthy
46. Being fully present
47. Valuing intrinsic worth of client
48. Being mindful of boundaries
49. Being emotionally resilient
ABC: Optimal Therapeutic Potential
50. By skillfully combing elements contained within each of the domains, clinicians are
able to achieve optimal therapeutic effectiveness.
personal growth and self-care (personal qualities that we invoke
or tap into in the service of our patients). Therapeutic humility
contains various themes, which collectively describe an approach
to patients that relies on specific therapist characteristics. These
characteristics or qualities reflect a depth of clinical wisdom that
often comes with experience, wherein therapists recognize and
accept the limitations of their own abilities to bring about change.
This is not clinical nihilism, but rather the realization that in tol-
erating the ambiguity of the situation and avoiding the urge to
have to fix, clinicians, ironically, can achieve good outcomes. It
440 Section X evidence-based interventions
Model of
Therapeutic
Effectiveness Therapeutic Humility
OPTIMAL THERAPEUTIC POTENTIAL
Personal Growth & Self-Care
Figure54.1 The model of therapeutic effectiveness comprises three primary domains (domain A:personal growth and self-care; domain B:therapeutic approaches;
and domain C:creation of a safe space) and three overlapping or hybrid domains (domain AB:therapeutic humility; domain BC:therapeutic pacing; and domain
AC:therapeutic presence). Domain ABC indicates optimal therapeutic effectiveness.
takes therapeutic humility to cope with uncertainty, and to sit
with the patients emotional distress; it also requires that the
healthcare provider be comfortable with taking a non-directive
and a non-authoritarian stance. Many themes within this hybrid
domain encourage healthcare providers to acknowledge the
expertise of the patient, to be humble and non-pretentious, and to
trust the therapeutic process.
Domain BC:Therapeutic Pacing
Therapeutic pacing is located at the interface between therapeu-
tic approaches and creation of a safe place. Themes found within
this hybrid domain refer to the flow of the therapeutic process.
So while it implicates what we do with patients (i.e., therapeutic
approaches), it addresses the pacing of therapeutic engagement,
which must be modulated to keep the process feeling safe. Pacing
can accelerate, by way of being more emotionally evocative or
confrontational, that is, encouraging the patient to talk about
fears and concerns, or it can be slowed down, by holding or
grounding the patient and being focused on the here and the
now. Pacing within the therapeutic encounter must constantly
be evaluated and adjusted, based on the clinical situation and the
patients specific needs.
Domain AC:Therapeutic Presence
Therapeutic presence is the overlapping of personal growth and
self-care and creation of a safe space. This interface describes per-
sonal qualities of the healthcare provider that contribute to the
sense of safety that the patient experiences. This element of the
therapeutic encounter is influential in shaping the tone of care since
healthcare providers must draw on their personal qualities (e.g.,
compassion and empathy, being trustworthy, being fully present)
and must use these qualities so that patients feel valued, affirmed,
and understood. Failing to do so undermines feelings of safety for
the patient and threatens optimal therapeutic effectiveness. Even in
the absence of being able to provide optimal privacy or calm sur-
roundings (elements of creating a safe space)such as occurs on a
busy ward or critical care settingclinicians can compensate by
invoking elements of therapeutic presence, that is, by being, among
other things, compassionate, empathic, respectful, non-judgmental,
genuine, authentic, trustworthy, and fully present.
Therapeutic Approaches
B Therapeutic Pacing
AB BC
ABC
A C
AC Creation of a Safe Space
Therapeutic Presence
Domain ABC:Optimal Therapeutic Effectiveness
Ideally, healthcare providers strive to achieve optimal therapeutic
effectiveness as they encounter patients who are distressed within
the context of their illness. No single theme, independent of any
other, was determined to reside within the domain of optimal
therapeutic potential (ACB). Hence, it would seem that optimal
therapeutic effectiveness requires the engagement of qualities
found within more than any single domain. Without engaging
themes across domains, optimal therapeutic efficacy is unlikely to
be achieved. Cases examples are provided that highlight the inter-
dependent nature of each facet of the model, in order to achieve
optimal therapeutic potential (see Cases 1, 2, 3).
Case 1
Dr.J.describes himself as someone who tends to do things quickly.
Nevertheless, he is a caring and thoughtful palliative care physi-
cian. One day he was called to the emergency department to see a
65-year-old woman with advanced breast cancer, with suspected
recent brain metastases. For several days, according to her family,
the patient, while conscious, had been mute and unable to convey
her wishes or feelings. Dr.J.entered the examination room, intro-
duced himself to the patient, described the purpose of his visit,
and proceeded to do a cursory examination. He than purposefully
decided to sit in a chair at her bedside, attempting what he called a
mind meldin essence, simply trying to imagine what she might
be thinking or wanting to tell him. After a few minuteswhich he
recalled feeling like a very long timehe got up to leave; he placed
his hand on hers and said, Were going to look after you. To his
utter amazement, she responded by saying, Thank you.
Model of Therapeutic Effectiveness (MTE) Lens: Using the
model of optimal therapeutic effectiveness, the nature of com-
munication that transpired in this encounter can be carefully
unpacked. Dr.J.s therapeutic approach or task was to carry out an
evaluation regarding the patients change in neurological status
and suitability for palliative care. Emergency departments do not
provide an optimal setting for the creation of a safe space; that is,
assuring privacy, calm, and confidentiality is always more chal-
lenging in these high traffic, high acuity areas. Dr. J., however,
was able to invoke elements of therapeutic presence, such as being

compassionate, empathic, and fully present (were going to take
care of you), valuing the intrinsic worth of the client (assuming
she could understand his explanations for why he was there, despite
her inability to respond), thereby enhancing the safety and thera-
peutic milieu of this clinical encounter. While it is supposition, his
decision to sit with the patient in silence may have been a result of
tapping into something within the domain of personal growth and
self-care. Perhaps recognizing his own vulnerability and helpless-
nessor those to whom he is emotionally connectedin the face
of lifes calamities accounted for him taking the extra time that
he did. Choosing to sit in silence can also be understood in terms
of therapeutic humility. In those few moments, Dr.J.decided to
relinquish his agenda to do and, instead, yield to the alternative
of simply being. This meant trusting the process and tolerating the
ambiguity of the situation, in the hope that his presence might be
a catalyst for a positive therapeutic outcome. The patients thank
you would suggest that the clinical encounter was profoundly
therapeutically effective.
Case 2
Ms. S.was a social worker, whose clienta middle-aged gentleman
with an advanced malignancyneeded to go on permanent dis-
ability. To arrange this, she asked him come to the hospital to sign
the appropriate forms. Rather than instructing him to pick up the
forms on the ward, or get them from the outpatient unit clerk, Ms.
S.felt it was critical that she personally be on hand to have him to
sign these documents. While she acknowledges that anyone could
have just as easily handed him the forms, she saw that her presence
was necessary to achieve an optimal therapeutic outcome.
MTE Lens:The therapeutic approach or taskvery much in the
mode of problem-solving, that is, signing forms to safeguard his
financeswas entirely straightforward. Because they met on the
ward, the creation of a safe s pace was largely reliant on her ability
to invoke elements of therapeutic presence, such as being compas-
sionate, empathic, and being fully present. Because neither she nor
her client had set aside time for a more formal lengthier session,
the elements of therapeutic pacing she invoked included listening
attentively, while normalizing and validating his experiences and
concerns, as opposed to encouraging more in-depth, perhaps emo-
tionally confronting discussions about his fears and distress. Ms.
S.understood the profound significance of having to go on perma-
nent disability insurance, perhaps tapping into something within
the realm of her own personal growth and self-care. For instance, her
own personal exposure to vulnerability, helplessness, or fear might
have sensitized her to how those feelings could play out in others.
Ms. S. knew that getting a signature was really only a minor
part of her task. It was equally important to acknowledge the
pathos of this transaction and the profound existential implica-
tions. It is worth noting that Ms. S.knew full well that she could
not undo the events of her clients illness, nor restore his ability to
earn a wage; and yet, she felt compelled to have him meet her on
the ward. This required her invoking various facets of therapeutic
humility, trusting that, by not avoiding possible emotion, tolerat-
ing clinical ambiguity, trusting in the process, and avoiding the
urge to have to fix (there was no fix to be had), that she might,
under the circumstances, provide him the best clinical encounter
possible.
Chapter54 healthcare provider communication 441
Case 3
Nurse L.was called into an examination room in the outpatient
clinic, after, according to the medical oncologist, a young woman
collapsed in tears upon hearing the devastating news that her
cancer was progressing and was no longer curable. L.arrived to
find the patient on the floor, crying and inconsolable. L.closed the
door and proceeded to lie down on the floor next to the patient.
She gently rubbed her shoulder, spoke in soft tones, and said, its
OK, Im not going anywhere, just breathe. Over the next 10
to 15 minutes, the patient managed to calm down, while arrange-
ments were made to have someone from her family meet her at
the clinic.
MTE Lens:Nurse L.immediately understood that her therapeu-
tic approaches or tasks would be limited. She intuitively offered
the patient some comfort through touch, and she sensed that this
encounter did not require many words. Closing the door, perhaps
even dimming the lights somewhat, helped create a safe space,
which in this instance was paramount, given the patients pro-
found vulnerability and feeling emotionally naked. Of course,
every facet of therapeutic presence was called upon, including
the ability to be emotionally resilient. This does not mean being
immune to the intensity of the encounter, but in the moment,
being able to shoulder the emotional weight of this experience.
With respect to therapeutic pacing, this is an excellent example
of holding or grounding the client. This is not a time to promote
emotional engagement or confrontation regarding what this news
likely means to her and her family, but rather, a time to focus on
the here and now, breathing, simply being in the moment. Nurse
L.s response took tremendous skill, sensitivity, and therapeutic
humility. Any clinician entering that room must face his or her
own helplessness and feelings of impotence, that is, not being able
to undo the reality of her now dire prognosis. But by not avoid-
ing emotion, sitting with the patients distress, and accepting the
inability to fix her anguish (i.e., elements of therapeutic humil-
ity), Nurse L.managed to provide real comfort and achieve, under
harrowing circumstances, optimal therapeutic effectiveness.
DISCUSSION
The Model of Optimal Therapeutic Effectiveness provides a lens
through which patient-healthcare provider encounters can be bet-
ter understood. Prior studies have focused on therapeutic pres-
ence22,23 and the integration of therapists personal characteristics
and techniques;24 but, unlike these studies, this research inte-
grates various aspects of patient-healthcare provider communica-
tion into a Model of Therapeutic Effectiveness.
This study is limited in that the participant healthcare provid-
ers may represent a group who are particularly open to articulat-
ing their insights regarding the therapeutic process, dominated
by the perspective of social workers and women. It should be
noted that differences between professional disciplines or sexes
were not noted in the focus group discussions, and it appears that
the elements of the model may transcend considerations of pro-
fessional discipline and gender. Finally, the strong affirmation by
the study participants regarding the models potential to inform
practice and teaching suggests that it has clinical and teaching
applications across professional disciplines within the setting of
clinical oncology.
442 Section X evidence-based interventions
CONCLUSION
Optimal communication matters in healthcare, given that
patients and their families are vulnerable, living with uncertainty,
and often afraid. In these circumstances, words as much as actions
can have a profound impact. Yet, despite the potential for words
to heal, to harm, to enlighten, or to confuse, patienthealthcare
provider communication is rarely the focus of empirical research
or academic rigor. There is an assumption that communication
will somehow happen, based on little more than intuition and
good intentionslittle wonder that healthcare encounters are
often tainted by feelings of being misunderstood or emotional
dissonance.
The Model of Optimal Therapeutic Effectiveness is based on the
collective experience of seasoned clinicians working in oncology,
and summarizes how they respond and achieve best outcomes
for patients with illness-related distress. The model is consistent
with other areas of medical scholarship, acknowledging the fun-
damental importance of anatomical dissection. This dissection, or
deconstruction, of the critical elements of effective communica-
tion, provides an empirical framework meant to guide clinicians
aiming to achieve optimal therapeutic effectiveness. The Model
of Optimal Therapeutic Effectiveness offers language that can be
used to describe the critical elements of communication, along
with a schema illustrating the overlap and connections between
these multiple constituent parts.
The model may be used in various and diversified ways. Those
conducting research on communication may find it helpful in
describing elements of their work, with domain and sub-domain
labels being applied to facets of their data or findings. The model
also has pedagogical value; in fact, almost everyone who took part
in this study indicated that the model would enhance their ability
to teach others how to address psychosocial distress. One could
envision the model being used to enhance clinical supervision,
again, using model vernacular to unpack what worked and what
did not work in any given clinical encounter. Finally, the model
may simply make clinicians more mindful of their own approach
to communication. Like any anatomical inquiry, seeing and
labeling each part and understanding how they interconnect are
the foundation of knowledge and ability. It is hard to hone ones
skills, or take corrective action, in the absence of a framework that
encapsulates optimal therapeutic communication. The Model of
Optimal Therapeutic Effectiveness is one such framework, which
hopefully will enhance the skill of healthcare providers and, in
turn, the experience of patients and families facing illness-related
distress.
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Philipsen BD. Analysis of the construct of dignity and content
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 CHAPTER55
Supportive Psychotherapy
and Cancer
A New Model for an Old Therapy
Marguerite S.Lederberg, MindyGreenstein,
and Jimmie C.Holland
THE SECRET TO CARING FOR THE
PATIENT IS CARING FOR THE PATIENT
Supportive psychotherapy for patients with cancer is the
psycho-oncologists (or psychosocial oncologists) single most
important tool. With it, patients can be sustained throughout the
fragmented course of their illness. It is both the simplest and most
complex tool we have. Therapists must be knowledgeable about
cancer as a medical disorder, skilled at assessing and managing
patients psychologically, and comfortable with their own subjec-
tive experience in the face of complex and tragic medical situations.
Further, the ability to recognize the patients changing psychologi-
cal needs requires sound clinical judgment and flexibility.
Psycho-oncologists come from different disciplines, cultural
backgrounds, and theoretical frameworks, yet all converge to
deliver this vital service. The crucial piecehuman interactionis
hard to fit into so many different theoretical frameworks, for which
technical and theoretical terms are inadequate. We should not
speak of supportive psychotherapy as a fallback, but rather as part of
the fundamental care of cancer patients, a scaffolding that promotes
adaptive coping. This scaffolding cannot be accomplished without
personal involvement and caring, as Francis Peabody once wrote.1
This is no less true today, almost 100years later. Human emotions
are universal and unchangingonly medical treatments change.
In this chapter, we define supportive psychotherapy in cancer
care, and provide the beginner with basic therapeutic principles,
while giving experienced therapists a fresh overview. Most lessons
apply equally to patients with other life-threatening illnesses. Rather
than necessarily providing solutions, we seek to identify techniques
for managing situations that might otherwise be overwhelming.
A MODEL FOR SUPPORTIVE
PSYCHOTHERAPY
Supportive psychotherapy, which can be utilized intermittently
or continuously, helps patients deal with distressing emotions,
reinforces pre-existing strengths, and promotes adaptive coping
with the illness (and the treatment). Regardless of ones type of
training, there are fundamental principles underlying this flex-
ible treatment, which allows for the exploration of the patients
self, body image, and role changes, within a relationship of mutual
respect and trust. It is, as Loma Feigenberg describes, a friend-
ship contract.2 The range of approaches includes the following:
Knowing how to clarify and discuss highly charged informa-
tion, and helping manage resulting emotions constructively;
Familiarity with a broad range of methods for promoting learn-
ing and problem-solving;
Being comfortable with a range of therapeutic activities, from
crisis intervention to being a quiet, supportive presence for
patients too weak to interact, to exploring deep dynamic pat-
terns, to family counseling;
Guiding patients and families to available professional and
community resources;
Working well with medical caregivers, so as to facilitate the
reciprocal flow of useful information (this means knowing how
to discuss the patients coping abilities and the vulnerabilities in
ways that humanize without violating confidentiality);
Understanding the medical information you are given, asking
if you need help understanding it yourself, and not hesitating to
ask for clarification;
Understanding your own emotional responses, especially in
your early years, as you learn to manage yourself for the long
haul.
HISTORY AND EVIDENCE BASE
Given the key need for such flexibility, supportive psychotherapy
is difficult to study in manualized, randomized controlled trials
that follow strict treatment fidelity guidelines. In fact, it is almost
impossible. However, numerous compelling studies from the
last 20years were reviewed in 2007 by a multidisciplinary com-
mittee of the Institute of Medicine (IOM), National Academies
444 Section X evidence-based interventions
of Science, which concluded that there was sound evidence for
recommending supportive psychotherapy. This landmark IOM
report, Care for the Whole Person: Integrating Psychosocial Into
Routine Care, represents an official paradigm shift, highlighting
the vital importance of integrating the psychosocial domain into
routine cancer care, 3 and including psychosocial care as one of the
criteria for good overall care. The report recommends screening
all cancer patients for distress/psychosocial needs, which should
then be addressed in their treatment plans. Those who are beyond
a threshold level of distress (identified as a general red flag,
rather than fitting any specific psychiatric diagnosis) should be
referred to a proper psychosocial resource for help. Atwo-phase
screening is recommended, first rapidly via one or two questions,
such as the Distress Thermometer, followed by more in-depth
appraisal as needed.
Supportive psychotherapy can effectively manage anxiety,
depression, and distress across all stages of cancer. In complex
cases, it is the default home base, from which the therapist guides
the patient to other helpful therapies and resources. And it is a role
that does not end with an ill patient until that patient is improved
or dies. It is a true commitment.
QUALIFICATIONS FOR CLINICAL
PRIVILEGES TO PROVIDE
SUPPORTIVE PSYCHOTHERAPY
ASAPSYCHO-ONCOLOGIST
Psycho-oncology is an inclusive discipline to which different pro-
fessions make unique contributions, though we assume appro-
priate psychotherapy training. Each therapist needs a coherent
framework for organizing, and drawing conclusions from, psy-
chosocial data. We also assume basic familiarity with assessing
and treating anxiety and depressive disorders, cognitive disor-
ders, and delirium.4
Supportive psychotherapy does not derive from any particular
theory, but from the practical needs of the patients present situa-
tion. Today, a number of different theories commonly underlie any
therapists technique (many of which are detailed elsewhere in this
book). This rapidly growing listincluding psychodynamically,
cognitively, and behaviorally informed theoriesaddresses issues
such as self-awareness, managing emotions and relationships,
absorbing losses, and struggling with existential issues, as well as
critical problem-solving techniques that can be applied, both emo-
tionally or behaviorally, across many points of the disease trajectory.
PRACTICAL ISSUES IN SUPPORTIVE
PSYCHOTHERAPY WITH CANCER PATIENTS
The supportive therapist sets the stage for a trusting relation-
ship by balancing the need for both flexibility and limit-setting,
especially regarding practical issues. For example, the location of
treatment may change due to circumstances, and may span outpa-
tient, inpatient, or even home settings; sometimes the telephone or
e-mail must suffice. The important issue is that the patient knows
you remain there for him.
The patients level of energy or illness will also vary, which may
necessitate shorter and/or less frequent sessions. These are still
extremely important. Even a curtailed session may be meaningful,
particularly when the patient is very ill. As patients recuperate and
feel able to address issues beyond illness, outpatient visits are rein-
stated with similar rules to those for physically healthy patients.
But each medical setback restarts the cycle.
One area that often requires particular attention is the patients
sense of his or her time being limited, with a need to work out
problems and family conflicts rapidly, yet realistically. Therapists
must be able to set reasonable limits while maintaining an accu-
rate sense of time within which the work can be accomplished.
A Note on Flexibility of Approach
While good therapists are always flexible, psycho-oncologists need
to be gymnasts, as patients concerns change repeatedly, and change
seems the only certainty.5 Fears during the diagnostic workup are
different from the pain of adapting to its result. Side effects may be
severe. Some refuse further treatment because the drugs are too
toxic. Others, who had focused on healthy living, feel betrayed
by treatment side effects, even when treatment is effective. Much as
they hate treatment, patients experience paradoxical anxiety when
it ends, having lost the sense of security that it afforded. This needs
to be recognized, normalized, and occasionally treated.
During difficult periods of acute illness, emotional reassurance
and support may be the best treatment. Patients may have to adapt
to an unexpected recurrence that forces them to face dark reali-
ties. Or they have to accept the permanent and devastating loss
of a body part or functions like walking, sexuality, sight, hearing,
or speech. Listening, exploring, and not offering false comfort are
themselves gifts. Gentle exploring may or may not follow.
Helping the patient cope with uncertainty remains a central
challenge. Patients struggle with anger at doctors who acknowl-
edge that they dont know what will happen next. Yet they can
feel stricken when given a prediction about survival, or crow with
satisfaction if they exceed that time (a pleasure their doctors do
not begrudge them).
The course of many cancers is like a roller coaster, with sudden,
severe episodes interrupting tolerably stable periods. Expect ther-
apy to have similar characteristics. As illness improves, patients
may explore more deeply personal problems. Shifting to a more
dynamic approach gives them something meaningful to discuss
besides cancer, and allows them to relate consciously to who they
were and how they got that way. This work may be disrupted by the
next medical event, but it fosters greater trust between patient and
therapist, giving the latter a fuller understanding of the patient.
The Need for the Therapist to Understand the Disease
The initial evaluation includes the diagnosis, staging, prognosis,
current therapy, and usual side effects. This information is impor-
tant for assessing the patients awareness of the illness and its seri-
ousness. Her subjective formulation may be very different from
objective reality. Obtain permission to call the primary physician,
oncologist, prior therapists, and anyone who can help you to under-
stand the medical facts underlying the patients current existence.
A man, whose self-esteem had been battered all his life, was afraid to
make demands by asking questions. He presented himself as the ideal
patient. Because the therapist was familiar with his disease, she was
able to discuss his fears in concrete and practical ways. This made
him feel more accepted, while deepening the therapeutic alliance.

Denial
When facing severe physical illness or poor prognoses, patients
can be remarkably deft users of denial. It serves as a cushion for
absorbing bad news, allowing the development of parallel levels
of knowledge, one realistic, one wishful. In the words of a young
woman with advanced colon cancer, I know Iam going to die, but
Icant believe Iam going to die.
The denial continuum ranges from nearly psychotic reactions
to mature coping skills. Distinguishing between pathological
and effective denial is useful:pathological denial is destructive,
as avoidance delays consultation, invites poor compliance, and
embraces risks; effective denial can help the patient focus on hope-
ful options, without interfering with care. But, if denial intensi-
fies as the disease progresses, it risks depriving the patient of a
powerful source of comfort. In general, denial as a coping strategy
varies considerably. Inconsistency should not cause surprise, but
instead, define an area of fruitful exploration.
Ambivalence and ambiguity are often employed in the ser-
vice of denial. This can frustrate medical teams, when patients
and families suddenly or radically shift their thinking about
important decisions. One day, they discuss a difficult option;
the next, they ignore it. Or they might withhold painful deci-
sions, for example, when choosing between two equally unde-
sirable treatments. Ambivalence can lead to avoiding medical
care altogether. If it does not interfere with a necessary deci-
sion, it need not be addressed. But eventually, the reality must
be discussed, and many doctors are able to do so in a kind and
non-confrontational way.
A single mother with aggressive, metastatic cervical cancer refused
to let her seven-year-old daughter visit, for fear of upset. They had
cheery phone conversations, and the patient talked in therapy about
fighting, to get home to her daughter. On the other hand, she also
had made financial arrangements, arranged for her brother to be
the girls guardian, and had been sending the child to visit her uncle,
in preparation. Fortunately, the uncle was sensitive, and after talk-
ing with the psychiatrist, was able to facilitate a successful visit
between mother and child, making possible a loving farewell.
A Note on the First Visit
For many, psychiatric referral adds insult to injury. Patients
sometimes say, I dont know why my doctor sent me! Often
a therapeutic alliance is created, anyway, and the patient can
acknowledge grief, suffering, fears, and relief as they are normal-
ized. If no change occurs, it is best to respect patients wishes, but
to keep the door open for a comfortable return, if desired. They
might get referred again or return voluntarily.
A 58-year-old businessman with a recent diagnosis of lung cancer
was being evaluated for secondaries before deciding on surgery. He
bluntly said he was only there at his wifes insistence. When the
therapist observed that he seemed like a man who was not used to
being ill or pressured by others, he agreed, and an alliance slowly
formed. He denied feeling depressed, but acknowledged feeling
anxious. Though the man remained uninterested in treatment, the
therapist took the initiative to emphasize his strengths, commenting
Chapter55 supportive psychotherapy 445
that his anxiety was understandable. She invited him to return if
his distress became less tolerable in the future. He did.
I Am OK, Just Out of Control
Cancer patients may not fit the neat diagnostic boxes of the
Diagnotic and Statistical Manual of Mental Disorders (5th edi-
tion; DSM-5). Some acutely distressed patients are upset at being
referred, because they have always been cheerful, resilient, and com-
petentin brief, normal. Even if we see potential issues, we must
acknowledge and respond to the patients overall self-description.
If we focus too exclusively on the disruption caused by illness, the
patient may feel diminished, angry, and demoralized. We empha-
size the strengths of the psychological self, because there can be no
reassurance about the physical self. Acknowledging lifes accom-
plishments, both worldly and psychological, can be productive.
A cancer diagnosis ushers in a frightening and depersonaliz-
ing loss of control. If the illness gets worse, patients may become
depressed or demoralized by the permanent loss of defining roles
and functions. Acknowledge their ever-present grief over this loss,
while pointing out strengths they may still possess. This kind of
early intervention may avoid the need for medication, fostering a
sense of continuity with the patients healthy, pre-cancer self, even
as he or she becomes sicker.
An accomplished woman presented in a tearful, disorganized state
four months after diagnosis of stage II breast cancer. Her unchar-
acteristic reaction appalled her. I am a totally different person. Its
terrifying! Her emergent need was for crisis intervention, medi-
cation, and monitoring of her mood disorder. But, throughout her
treatment, the therapist recognized the importance of acknowledg-
ing and honoring her ability to manage again on her own. After
several weeks, the patients strengths resurfaced, and she began to
cope in more characteristic ways.
Patients Need to Tell Their Stories
When you ask, it comes tumbling out! Sometimes the story is
about anger or disappointment; sometimes the impact of the ill-
ness is so strong that facts get lost along the way. It helps if your
familiarity with the disease enables you to show that you under-
stand something about his ordeal. Unless there is an urgent need
for other information, let the patient unburden, which may reveal
interesting emotional information. Collaborative history from
family members, with the patients permission, and a signed
release for reports from other physicians are important. It reas-
sures the patient that you are a member of his team.
The Patients Body Also Speaks
A patient may be suffering pain, revulsion, or heartbreak at
changes to his body. The therapist must be able to stay with him,
without displaying discomfort. It is not always easy. While we are
accustomed to psychological disclosures, we must also appreciate
the immediacy of the body, its losses, humiliations, and exhaust-
ing routines that now dominate life. This requires varying degrees
of conscious effort for different therapists.
The opposite may also occur, when the body is initially silent.
An accidental diagnosiswhere the patient never feels ill until
treatmentcan be bewildering. The patient may be resentful, or
446 Section X evidence-based interventions
even develop a paranoid tinge. It is useful to acknowledge and
normalize such feelings. Otherwise, they may persist into later
phases of the disease, when anguish increases. Angst and anger
will be projected even more negatively, usually onto the medical
caregivers, but also onto relatives in dysfunctional families.
Some patients go through treatment with minimal interference
with normal life. Not all treatments are equally rigorous, and not
all patients are equally resilient. It is important to be aware of what
your patient is going through. Some are proud or relieved to have
gone through treatment without missing work. But they do feel
fatigued and require rest. Others never return to work again. If the
reason is not obvious from their physical state, it is worth exploring.
BOUNDARIES IN THE THERAPY
RELATIONSHIP:THERAPEUTIC ACTIVISM
The issue of boundaries when working with the medically ill is dif-
ferent than with the healthy.6 Touching, usually taboo, becomes
acceptable, for example, a hug or an encouraging pat on the arm.
However, one should be conscious of valid therapeutic reasons for
such actions, and alert to patients who need the security of physi-
cal distance.
Hospital consultations make short work of standard guide-
lines. The ill patient might be positioned uncomfortably, unable
to pull blankets higher. He may be thirsty and cant reach the
glass. Ignoring such immediate needs limits the effectiveness of
any contact. The therapist must feel comfortable helping with
such problems, like pulling up blankets, or moving the glass.
Such actions can also open conversation. The patients body has
betrayed him, and has been assaulted by rigorous treatments. The
therapist must welcome any discussion of distortions in body
image or sense of self, including questions about unsettling physi-
cal details. Ignoring the body sends the wrong message, one that
the patient dreads, because in her own life, it happens all too often,
and painfully isolates her from others. When a patient is weak, in
pain, or in a wheelchair, attention to promoting comfort should
not depend on being invited. Judgment should be used in seeking
extra help when needed.
SHARED EXISTENTIAL THEMES ACROSS
THE CANCER SPECTRUM
Prior Cancer Experiences and the Meaning of Cancer
Despite many commonalities, having cancer means something dif-
ferent to each individual, whether consciously or not, especially if
she has had previous experiences with the illness. The loss of par-
ents or other loved ones to cancer also affects how the patient expe-
riences her own illness. Difficult or haunting memoriesoften
decades oldmay need to be explored. But they belong to another
age, and the patient must be helped to confront the differences
between themselves then and now, and between treatments then
and now. Therapy may address unfinished business, re-awakened
grief, frightening memories, guilt around imagined misdeeds, and,
usually, lonely suffering and helplessness never shared with a sup-
portive adult. Thus, exploring a patients associations with cancer
is quite revealing. When not volunteered, it is elicited through a
detailed family history, preferably using a genogram that includes
grandparents and inquires about good friends as well.
Guilt
Guilt is a common issue. This is not truly guilt, but an attempt to
attribute causality. Many feel that they are being punished for pre-
vious misdeeds, which itself leads to grief and disruption. Loved
ones may contribute through blunt accusations about unhealthy
behavior, or by nagging about having the right attitude. Such
blaming the victim is generally toxic and unjustified (even for
smokers, it is not particularly helpful). Many toxic exposures were
not in the patients control, although diet is being identified as
causal for some.
Guilt is important in diagnosing major depression. The
physically ill, depressed patient may not always display overt
depression or active suicidality; physical symptoms of depres-
sion may be attributed to the cancer. Depressed patients typi-
cally feel guilty, convinced they are not really worth saving,
and lose agency over life. This state is accompanied by loss of
interest in the things they once enjoyed, constricted affect,
poor eye contact, personal neglect, and imperviousness to out-
side input.7 Such a patient needs referral for medication, as
do patients with severe anxiety, panic attacks, or confusional
states. 57
Fear of Death
The thought of death barrels instantly into the mind of all newly
diagnosed patients, unless the tumor is so curable that the patient
believes the physicians reassurances. Even then, the word can-
cer is enough to evoke terror, sometimes overwhelming all else.
For some, it is not fear of death but of dying, for which reassur-
ance is easier to offer. But some are terrified at the prospect of
being dead, which is much harder to explore. It may be related
to some personal history, but often it is very primitive, and not
readily available. Exploring such issues amidst the insults and
injuries of the disease is very difficult. Discussing it repeatedly
in a calm and secure setting can begin to make it a little easier.
Alife review, emphasizing underlying meanings and the unity of
the narrative, can help the patient feel better about what she has
accomplished thus far in life, and who she has been. Medication
for anxiety is usually beneficial, but does not obviate the role of
human conversation. Relaxation techniques can bring momen-
tary relief.
Some patients have an excellent prognosis, and yet, are con-
vinced they are going to die. This usually relates to the premor-
bid personality, and is best treated outside a cancer center or
clinic.
Spirituality and Religion in Supportive Therapy
The need for cultural and religious sensitivity is well recognized.
But in fatal illnesses, it is crucial. Patients with strong religious
or spiritual beliefs will adapt to illness and death within these
constructs. They may rely on a religious counselor or commu-
nity resources for extra support. Clearly, the therapist supports
the patients prior beliefs, without imposing ones own beliefs or
perceptions about existential issues. Obviously, there is no place
for proselytizing.
For patients without such pre-existing resources, a number of
relaxation and breathing techniques can relieve anxiety, while
guided imagery can get the patient in touch with the inner self. Use
conversations in which the patient describes his most meaningful,

happy, or peaceful moments, and offer to make a tape based on
that information, enriched by constructive and realistic elabora-
tion. Patients often use such tapes repeatedly. For people who do
not locate transcendent feelings in a particular practice, moments
of intense, facilitated introspection may bring a different kind of
peace.
Transition to Palliative Care
Ideally, the transition from curative to palliative care should be
introduced early. Late transitions are psychologically more dif-
ficult, especially if the patient (and/or family) is shocked by the
news. Therapists can alert oncologists to patients end-of-life con-
cerns, and can help patients explore such thoughts further, using a
hypothetical What would you do if...? Existential issues come themselves.
to the fore, and the therapist is well positioned to explain them to
the medical staff, as necessary. This speaks yet again to the neces-
sity of being known and trusted by the staff.
As death becomes a fully acknowledged outcome, education is
needed about what to expect, and, most of all, what can be done
to ensure comfort and support for patient and family. Therapists
can help everyone process emotionally loaded medical informa-
tion that was misheard, altered by wishful thinking, or forgotten.
It is impossible to exaggerate the patients and familys need for
explanations about what is happening, what it means, and what
may come next.
Honest communication is critical. The therapist can help the
patient address unfinished business, and to better communicate
about dying and saying goodbye. It is moving to see a family that
is open about what is happening, surrounding the patient with
warmth and love until the end. A patient who has been pro-
tected from the truth dies alone, no matter how many people are
in the room. Therapists should try to minimize this. If the patient
is dying at home, a therapist visit is very meaningful, for both.
Attending a funeral or a memorial is a personal choice, depending
on ones need to honor the patients memory, support the family,
and assist closure for ones self. Recognizing this personal involve-
ment is important.
While you arent treating families, it is important to recog-
nize that, optimally, helping patients may involve understanding
their roles in their families. This process is explored further in
Chapter74 of this book.
CONTROVERSIES
Unfortunately, many difficult choices may arise in the final days,8
including decisions about whether to start protocols, or when to
stop nutrition and hydration. Family members may aggressively
insist on useless, inappropriate care. At such times, therapists can
support the staff. Some patients want to select the time of their
death and seek staff help, which is illegal in most venues. Such
requests must be handled sensitively, accompanied by advice
about legal options, such as stopping treatments, nutrition, and
hydration. The proxy may be in a difficult position if the family is
not united, and should receive therapist attention. The best stance
is to remain constant in support.
Advanced directives are becoming more common, making clear
the patients wishes. Therapists do well to encourage completion of
these when discussing issues like wills, estate planning, and the
appointment of health proxies.
Chapter55 supportive psychotherapy 447
THERAPIST ISSUES
Working almost exclusively with cancer patients is not easy.
Many professionals cannot imagine doing it; psycho-oncologists
are often a highly self-selected group. Many of us come because
of personal losses or ordeals. They need not disqualify us, but we
must be aware of them and their impact on us. Keep in mind the
limits of what we can do, and keep a good perspective, along with
a healthy sense of humor, sometimes gallows humor. Awareness
of counter-transference reactions is necessary, given the exposure
to wrenching tragedies and death, the latter always hovering in
the thoughts of both patient and therapist. This is particularly
true for therapists who have lived through traumatic cancer losses
When the Therapist Is a Cancer Survivor
A number of cancer survivors wish to help patients going through
the same ordeals they themselves had faced. In order to do this
work, they must develop a stable adaptation to their disease, lest
they be hijacked by bursts of emotional memory. They must stay
focused on the patients story, despite their own dramatic experi-
ence. In truth, they do have special knowledge, but, as with other
boundary crossings, they must share only what they clearly know
will benefit the patient.
Psychotropic medications can and must complement support-
ive therapy when patients need further treatment of depression,
anxiety or confusion. Refer these patients promptly.9
When the Best Approach Is a Referral
Supportive therapy supports patients; it does not bind them.
Realistic improvement is celebrated, safe exploration is encour-
aged, and interruptions are appropriate. We cannot fix all our
patients problems. Referral for complementary therapieslike
art, music, meditation, and yogais helpful for patients who find
talk therapy difficult. There are limits to what we can do, and
times when referral to someone else is best. The patients usually
experience referrals as taking care of them.
Sometimes, the patient lives far away from the hospital, or
would prefer a community resource. Most cities have cancer sup-
port groups, including telephone and online ones. They bring both
excellent and unhelpful support. Large advocacy groups such as
Gildas Club, Cancer Support Community, and Cancer Care have
online and buddy systems that are reliable. They also offer
a large variety of other helpful on-site activities. The American
Psychosocial Oncology Society has a helpline to assist patients in
finding a counselor with knowledge of cancer (l-866-APOS-4-
HELP). Some effective group approaches are described in other
chapters.
The Psycho-Oncologist
Last but not least, we all need to review our own lives, especially
our losses, and must try to understand our motivation for doing
this work. We need to recognize when a patient is touching us
particularly deeply, and remain alert to over-involvement or
over-identification. We must also think about patients whom we
dislike or who make us angry. This is the usual counter-transference
work, though in a context skewed by illness, suffering, injustice,
and death. This is not a trivial difference. The same examination is
appropriate for caregivers and family members.10
448 Section X evidence-based interventions
We must learn to be involved enough to be authentic with
patients, but not so involved that they invade our personal life
more than rarely. Whenever it happens, we must pay attention
and talk to a colleague, a mentor, peer supervision group, or a pro-
fessional until it abates. Experienced therapists must offer newer
therapists a lot of support, which we ourselves once needed. If
working in isolation, seek out peers, even if only by e-mail, and
join professional listservs. Stay connected to them, attend meet-
ings, and enjoy socializing as much as learning. Join a national
psycho-oncology organization or become part of the International
Psycho-Oncology Society (IPOS; www.ipos-society.org).
REFERENCES
1. Peabody FW. The care of the patient. JAMA. 1927;88:872882.
2. Feigenbaum, L. Terminal Care:Friendship Contracts with Dying
Patients. NewYork:Brunner-Mazel; 1980.
3. Institute of Medicine (IOM). Committee on Psychosocial Services
to Cancer Patients/Families in a Community Setting, Board on
Health Care Services. In:Adler NE, Page AEK, eds. Cancer Care for
the Whole Patient:Meeting Psychosocial Health Needs. Washington,
DC:National Academies Press; 2008.
4. Lederberg MS, Holland JC. Supportive psychotherapy in can-
cer care:an essential ingredient in all therapy. In Watson M,
Kissane DW, eds. Handbook of Psychotherapy in Cancer Care.
Chichester:Wiley-Blackwell; 2011.
5. Watson M, Kissane DW, eds. Handbook of Psychotherapy in Cancer
Care. Chichester:Wiley-Blackwell; 2011.
6. Lederberg MS. Negotiating the interface of psycho-oncology
and ethics. In:Holland JC, Breitbart WS, Jacobsen PB, etal., eds.
Psycho-Oncology, 2nd ed. NewYork:Oxford University Press;
2010:625629.
7. Miller K, Massie MJ. Depressive disorders. In:Holland JC,
Breitbart WS, Jacobsen PB, etal., eds. Psycho-Oncology, 2nd ed.
NewYork:Oxford University Press; 2010:311318.
8. Lederberg MS. End of life and palliative care. In Sadock BN,
Sadock VA, eds. Comprehensive Textbook of Psychiatry, 9th ed.
Philadelphia:Lippincott Williams & Wilkins; 2009:23532378.
9. Holland JC, Breitbart WS, Jacobsen RB, etal., eds. Psycho-Oncology,
2nd ed. NewYork:Oxford University Press; 2010.
10. Sourkes BM. The Deepening Shade:Psychological Aspects of
Life-Threatening Illness. Pittsburg:University of Pittsburgh Press;
1982.
 CHAPTER56
Cognitive and Behavioral
Interventions
Barbara L.Andersen, CarolineS.Dorfman,
and Neha Godiwala
INTRODUCTION
A diagnosis of cancer can be devastating. Patients may be over-
whelmed by the immediate necessities of choosing physicians,
making treatment decisions, coping with side effects of treatment,
navigating insurance coverage and finances, and managing the
disruption to the family. Added to this burden may be depres-
sive and anxiety disordersa prevalence exceeding 20%.1 In this
chapter we focus on the treatment of anxiety and depression in
cancer patients who have been underserved by the psychological/
psychiatric and oncology communities.
With aging, adults become vulnerable to physical illnesses,
and illnesses, disability, and functional decline are risk factors
for mental disorders.2 Despite the added risk that chronic illness
poses, there has been a dearth of research on psychiatric disorders
and their treatment among cancer patients. However, in recent
years, trials examining the efficacy of cognitive behavioral ther-
apy (CBT) for anxiety and depression have been reported. Results
of these trials suggest that CBT is associated with improvement in
symptoms of anxiety and depression among cancer patients.
Facing Cancer With the Burden
ofUntreatedPsychopathology
Mood and anxiety disorders are common, disabling, and unremit-
ting, with lifetime prevalence estimates of 21.4% and 31%, respec-
tively.3 More specifically, over 16% of people will experience major
depressive disorder (MDD) in their lifetime, with 6.6% meeting
criteria for depression within a 12-month period.4 Of anxiety
disorders, generalized anxiety disorder (GAD) is one of the most
common. Lifetime prevalence estimates of GAD range from 4% to
7%, with 12-month estimates ranging from 3% to 5%. Both MDD
and GAD are associated with substantial functional impairment.3
Unfortunately, circumstances are made even more difficult by the
fact that, for the individual, comorbidity of psychopathology tends
to be the rule, not the exception. Of those with MDD, it is likely
that within 12months, 58% will also meet criteria for an anxiety
disorder.4 Of the comorbidities, MDD/GAD is the most common.
Finally, both GAD and MDD are more common for women than
men;5 depression, in fact, is the leading cause of disease-related
disability among women.6
In recent years, the study of psychopathology among cancer
patients has grown, but when compared to our knowledge of psy-
chopathology among other chronic illnesses (e.g., coronary heart
disease),7 the dearth of information is alarming. Though studies
vary, the point prevalence estimates for cancer patients have been
estimated to be 38.2% for any mood disorder, 20.7% for all types of
depression, 10.3% for anxiety disorders, and 19.4% for any adjust-
ment disorder.8 By comparison, the World Health Organization
World Mental Health reports 12-month prevalence estimates for
the United States as 9.7% for mood disorders and 19.0% for anxi-
ety disorders. 3 As is the case for those without concurrent physical
illness, depression and anxiety co-occur among cancer patients.
Stark etal.9 have found 38% of cancer patients with an anxiety
disorder to also have MDD. Further, some of these individuals
may bring a history of psychopathology to their cancer diagnosis.
Those with a history of mood and anxiety disorders are at signifi-
cant risk for developing psychiatric complications following the
diagnosis of cancer.10
Addressing the Needs of Cancer Patients
WithComorbid Psychopathology
With such a high base rate, one might expect that patients with
psychological comorbidity would be readily identified and
treated, but they are not.11 In 2008, the Institute of Medicine
(IOM) published a landmark report, Cancer Care for the Whole
Patient:Meeting Psychosocial Health Needs, concluding that psy-
chological needs of cancer patients are not addressed, posing a
serious problem for US healthcare.11 But this occurs despite the
availability of evidence-based treatments (EBTs). Hundreds of
randomized controlled trials (RCTs) have successfully tested
and shown psychological interventions to be efficacious for can-
cer patients in reducing cancer stress, enhancing positive coping
and quality of life (QOL),1214 improving health behaviors (diet,15
exercise,16 and adherence17), enhancing biologic responses such
as immunity,15,18 and in some circumstances, reducing risk for
disease progression and death.19,20 However, discussions about
450 Section X evidence-based interventions
psychosocial difficulties and referral to use psychosocial services
are uncommon.
Excepting the most obvious symptoms such as suicidal ide-
ation, diagnostic criteria for mood disorders may not be known
by the oncology team, symptoms may be trivialized as a normal
reaction, or interpreted as due only to impaired physical status.
Studies suggest that patients are aware of their needs to deal with
emotional problems and, moreover, they want their medical team
to ask about difficulties and offer emotional help.21 However, it is
estimated that 7.6million cancer survivors in the United States
have not discussed their psychosocial functioning with health-
care providers22 in spite of IOM recommendations to providers
to do so and patients positive views about receiving psychosocial
services.23 Studies show that oncologists and nurses infrequently
detect depressive symptoms in patients who have them, and then
underestimate their severity.24
Even when identified, patients may go untreated. For example,
among 112 women with MDD undergoing cancer treatment, Ell
and colleagues25 found that few were being treated: only 12%
were receiving anti-depressants and only 5% were receiving psy-
chological therapy. In addition to lack of symptom relief, how-
ever, the absence of treatment brings added sequelae:26 more
symptom distress, 27 less meaning in life, 28 maladaptive coping, 29
and employment absenteeism, 30 among others. Treatment for
either anxiety or depression can successfully address issues such
as these14 and has the potential to reduce the risk of recurrence
or cancer death.31
Two national forces are converging, attesting to the importance
of psychosocial care for cancer patients. They provide impetus for
the provision of treatment to patients. In 2012 the Commission on
Cancer (CoC) of the American College of Surgeons (ACS) defined
stringent new patient-centered quality standards for accreditation
of cancer clinics and hospitals. The audiences for the guidelines
are the 1500 ACS member institutions across the country and
their new applicants. According to Standard 3.2, by 2016 all cancer
clinics must provide psychosocial services to cancer patients and
must document the efficacy of doing so. This standard provides
an enormous incentive, that is, hospital accreditation, for centers
to provide interventions for cancer patients (or refer patients to
receive them).
The second impetus is from the American Society of Clinical
Oncology (ASCO) 2014 guidelines for screening, assessment, and
treatment approaches in the management of symptoms of depres-
sion and anxiety in adult cancer patients. 32 The target popu-
lation for the guideline is adults (age >18years) at any phase of
the cancer continuum. The target audience includes oncologists,
psychiatrists, psychologists, primary care providers, nurses, and
others involved in the delivery of cancer care. Based on the most
relevant scientific evidence, the guidelines specify that all cancer
patients be evaluated for symptoms of depression and anxiety at
periodic times across the trajectory of care. Assessment should
be performed using validated, published measures and pro-
cedures (see Table 56.1). Depending on levels of symptoms and
supplementary information, differing treatment pathways are
recommended. More specifically, the guideline recommends the
following:Psychological and psychosocial interventions should
derive from relevant treatment manuals for empirically supported
treatments specifying the content and guiding the structure,
delivery mode, and duration of the intervention.
Taken together, CoC specifies the necessity and ASCO specifies
the means for cancer centerslarge and small, urban and rural
to provide psychosocial care to patients and to document the effi-
cacy of their doing so.
Efficacious Psychological Treatments for Mood
andAnxiety Disorders
Fortunately, efficacious treatments exist. Among psychotherapies,
the most extensively studied is cognitive behavioral therapy (CBT),
and it is an effective treatment for both mood and anxiety disor-
ders. 33 CBT has generally been found to be more effective than
control conditions33 and in RCTs, as effective as anti-depressant
medication. 34 Even among the severely depressed, Hollon and
colleagues35 found that both treatments produced comparable
results (about 58% treatment responders) during the acute phase,
but when discontinued, patients treated with CBT were at lower
risk for relapse than those treated with medication, for as long as
two years. Overall, when effect sizes for CBT are examined across
trials, they are large. For short-term post-treatment outcomes,
median effect sizes have been large, in the range of .60 to .70 for
depressive disorders and for anxiety disorders. 3641 Few studies
have followed patients beyond 1218months, however. The avail-
able effect size estimates for long-term outcomes are roughly half
the magnitude of the short-term effects.40,42
CBT for depression has three components.43 Behavioral activa-
tion involves efforts to increase patients engagement in activi-
ties and contexts that may allow them to experience pleasure or
a sense of accomplishment; behavioral activation is also done to
promote cognitive change. Second, correcting negative, automatic
thoughts is a collaborative process when therapist and client work
together to identify and evaluate depressive thinking accompany-
ing patients negative mood states. Once patients have mastered
these and other basic skills (e.g., problem-solving, assertive com-
munication), therapists assist clients to identify and change core
beliefs and schema, which, more generally, underlie a depressed
patients pervasive, negative beliefs. Research suggests that all
three components are important, although some studies show
that behavioral activation is sufficient.44
The efficacy of CBT for GAD is also strong.45 Unlike the
depression trials, many fewer RCTs have compared medica-
tions to CBT, but in them, CBT outperforms medications. 46
This conclusion is tempered, however, by the limiting factor
of benzodiazepines being the primary drug with which CBT
has been compared. Relative to other treatments/conditions,
however, meta-analytic reviews show CBT for GAD to be
superior to wait-list conditions, no treatment control condi-
tions, non-directive therapy, and pill placebo conditions.45,46
Additionally, recent RCTs have shown that augmenting anxio-
lytic medications with CBT can produce significant reductions
in worry severity.47 CBT for GAD clearly produces significant
improvements in the acute phase of treatment, as it does for
MDD, but the strongest findings are from studies showing its
long-term effects.48 Durham and colleagues 48 found that GAD
patients who received CBT (compared to those receiving medi-
cation, placebo, or analytic psychotherapy) had lower symptom
severity and were less likely to have sought additional treat-
ment during the next 8 to 14years, suggesting enduring effects.
Meta-analytic data support this finding, with CBT for GAD
producing long-term symptom reduction.49
 Chapter56 cognitive and behavioral interventions 451

Table56.1 American Society of Clinical Oncology Recommendations for Screening, Assessment, and Treatment in the Management of Symptoms
of Depression and Anxiety in Adult Cancer Patients

Screening, Assessment, and Treatment:Depression in Adults With Cancer

Level of Symptomatology Determined Further Assessment Treatment

bythe PHQ-9a
None/Mild Offer referral to supportive care services
Score 17
Moderate Identify pertinent history/specific risk factors for Moderate:Low intensity intervention options include
Score 814 depression Individually guided self-help based on CBT

or Family history Group-based CBT for depression

Moderate to Severe Score 1519 Prior depressive disorder Group-based psychosocial interventions

or Psychiatric history Structured physical activity program

Severe Score 2027 Disease severity Pharmacologic intervention, as appropriate

Gender
Moderate to Severe:High intensity intervention options
Partner status
include
Presence of other chronic illness Individual psychotherapy (CBT, interpersonal therapy)
Employment/SES Pharmacologic intervention

Combination of psychotherapy and pharmacologic

intervention

Screening, Assessment, and Treatment:Anxiety in Adults With Cancer

Level of Symptomatology Determined Further Assessment Treatment

bythe GAD-7b
None/Mild Offer referral to supportive care services
Score 04, 59
Moderate Identify pertinent history/specific risk factors for Moderate:Low intensity intervention options include:
Score 1014 (generalized) anxiety Education and active monitoring

or Family history Non-facilitated or guided self-help based on CBT

Moderate to Severe/Severe Score 1521 Psychiatric history Group psychosocial intervention

History/presence of alcohol or substance abuse Pharmacologic intervention, as appropriate
Presence of other chronic illness
Moderate to severe:High intensity intervention options
include
Individual psychotherapy (CBT, applied relaxation)

Pharmacologic intervention

Combination of psychotherapy and pharmacologic

intervention
aPHQ-9=Patient Health Questionnaire Nine Symptom Depression scale 66

bGAD-7=Generalized Anxiety Disorder-7 item 67

Adapted from Andersen BL, DeRubeis RJ, Berman BS, etal. Screening, assessment, and care of anxiety and depressive symptoms in adults with cancer:an American Society of Clinical
Oncology guideline adaptation. J Clin Oncol. 2014;32(15):16051619.

CBT for GAD involves several components. As worry is pathog-
nomonic, patients are first taught to attend to the internal and
external cues that precede their worry. Second, patients are taught
progressive muscle relaxation training and are encouraged to use
it for preventing and/or reducing daily symptoms. Third, patients
are taught cognitive coping skills, as is done in CBT for depres-
sion. Patients learn to identify and correct their automatic worries
and perception of future threats (rather than correcting negative
self-relevant views, as is done for depression). To practice their
new coping strategies, in-session imagery rehearsal is used, and
then out-of-session homework follows. Earlier research suggested
that the cognitive elements of treatment were essential for effi-
cacy.50 More recent RCTs suggest that cognitive therapy, applied
relaxation with self-control desensitization condition, and the
combination are similarly efficacious.50
While having strong empirical support for the treatment of
MDD and GAD, its efficacy with cancer patients has not been suffi-
ciently studied. There are components of CBT that seem well suited
for cancer patients coping with depression. The cognitive diathe-
sis implicated in cognitive models of depression may be readily
activated with the cancer stressor. Most patients are thrust into
an unfamiliar, complex medical environment, and life trajectories
452 Section X evidence-based interventions
are suddenly uncertain. Depressed patients without cancer tend to
view their environment as overwhelming, obstacle-laden, and, for
some, there is hopelessness. Cancer patients, in general, respond
to the diagnostic period with similar judgments.51 Thus, CBTs
direct treatment of distorted cognitions, feelings of helplessness,
and/or pessimism about the future would be timely and appropri-
ate. Similarly, the magnitude of stress accompanying cancer may
be so significant that it may trigger depressed patients core beliefs
(I am worthless, inadequate, unlovable, deficient, and now Iam
sick.), and CBT directly identifies, challenges, and attempts to
change these recurrent, negative self-views.
Similar advantages for CBT would be expected for cancer
patients diagnosed with GAD. GAD is often a lifelong disorder, 52
and the chronic, anxious apprehension characterizing these indi-
viduals would be easily activated with a cancer diagnosis. For
them, CBT would identify specific worries and address their typi-
cal overestimation of the likelihood of negative events and/or cat-
astrophizing. The relaxation therapy component of CBT for GAD
would be particularly helpful for cancer patients, as it has been
shown to be so in other contexts.
The majority of trials of CBT in the context of cancer have
examined unscreened populations:those without a known diag-
nosis of GAD or MDD. In these studies, the treatment is provided
to patients having a range of symptoms, from none to moderately
severe or severe. The impact this would have on the research (i.e.,
a circumstance of low power) is that a larger sample size would
be required to demonstrate any effect on an outcome. Even if an
effect were observed, however, one would still not know the effi-
cacy of the treatment for patients with mood or anxiety disor-
ders. The available data with unscreened patients suggest what
treatments might be considered for those with MDD or GAD.
Studies have included multiple components of CBT (e.g., relax-
ation training, assertiveness training, thought monitoring). 5355
Other RCTs have tested the efficacy of a single component, such
as cognitive reappraisal, 56 problem-solving, 57 or behavioral acti-
vation.58 Across studies with unscreened patients, there is a pre-
dominance of positive, significant findings at post-treatment 56,57
rather than null.54
Additionally, trials utilizing CBT with unscreened cancer
patients have tested its efficacy for cancer-specific physical prob-
lems, including insomnia and fatigue. Interestingly, improve-
ments in symptoms of depression or anxiety are often secondary
outcomes. For example, multiple studies have examined the effi-
cacy of CBT for insomnia (CBT-I).56,59,60 Common components
of CBT-I include cognitive strategies, education and provision of
sleep hygiene information, relaxation training, stimulus control,
and sleep restriction. Patients typically indicate improvements
in sleep on subjective59 and objective59,60 sleep indices, lower fre-
quency of medicated nights, 56,59 and better sleep quality.59,60 In
addition to improvements in sleep and reductions in symptoms
of insomnia, significant reductions in symptoms of anxiety56 and
depression,56 as well as improvements in mood,60 have been found
post-treatment.
Similar to insomnia, a few studies have examined CBT as a
treatment for fatigue.61 These treatments often involve cognitive
restructuring around the negative beliefs about fatigue and the use
of behavioral strategies (e.g., activity scheduling, increased exer-
cise). Patients report improvements in fatigue62,63 and secondary
outcomes, such as quality of life63 or psychological distress.62
A small number of studies have examined CBT with patients
screened for significant distress, rather than depressive or anxi-
ety disorders per se. Amethodologically strong, early study was
that by Telch and Telch,64 who screened patients for high distress
and compared group CBT to support group and control arms. The
six-week intervention included behavioral activation and con-
structive thinking in addition to relaxation, stress management,
assertive communication, problem-solving, and feelings manage-
ment. The CBT group was most effective, and this is one of the
few studies in the literature showing the control group to worsen.
Moorey et al.65 accrued patients diagnosed with an adjustment
reaction and found problem-focused CBT to significantly reduce
depressive and anxiety symptoms compared to supportive coun-
seling. The intervention had six to eight sessions with the patient
and, optionally, the spouse. Cognitive change was achieved
through identification of automatic thoughts, as is done in clas-
sic CBT for depression. Behavioral activation was also included,
along with progressive muscle relaxation, spousal communication
strategies, and fostering a fighting spirit. Trask and colleagues 66
examined a four-session CBT intervention in melanoma patients
screened for high distress. Although the intervention did not
result in lower overall distress compared to a control group, dif-
ferences were noted in anxiety and health-related quality of life.
In summary, research suggests that CBT is efficacious for the
treatment of cancer patients with comorbid MDD and GAD.
However, the majority of trials have been conducted with
unscreened populations and/or use only components of CBT,
rather than full CBT protocols. CBT-based protocols have been
used for specific physiological concerns (e.g., insomnia, fatigue).
Despite their limitations, patients treated via these methods fre-
quently experience improvements in symptoms of anxiety and
depression. These improvements suggest that CBT may be effec-
tive when conducted with individuals diagnosed with MDD and/
or GAD. The remaining sections present the results of recent trials
of CBT adapted to the unique situation of cancer patients with
comorbid depression or anxiety.
CBT FOR CANCER PATIENTS WITH MOOD
AND ANXIETY DISORDERS:EXAMPLES
FROM THE LITERATURE
CBT for Anxiety
Greer and colleagues67,68 developed a brief CBT protocol tailored
to treat comorbid anxiety in patients with advanced cancer. In
the six- to seven-session intervention, 67 patients are introduced
to four modules:(1)psychoeducation and goal setting, (2)relax-
ation training, (3)coping with cancer fears, and (4)activity plan-
ning and pacing. In modules 1 and 2, patients learn about the
symptoms of anxiety in the context of their disease, are provided
with an overview of the CBT model, set goals for treatment, and
receive instruction in diaphragmatic and pursed-lip breathing,
as well as autogenic relaxation. During module 3, patients are
assisted with identifying automatic thoughts and worry, differ-
entiating unrealistic worries from realistic worries, and utiliz-
ing cognitive restructuring techniques. Problem-solving skills
are recommended for use with realistic worries; if action cannot
be taken to resolve the worry, emotion-focused techniques (e.g.,
self-soothing) or acceptance-based techniques (e.g., mindfulness)

are recommended to assist with distress reduction. Finally, in
module 4, patients are assisted with planning and engaging in
activities in line with cancer-related physical limitations or symp-
toms. Skills emphasized during this module include planning for
fluctuations in functional abilities, activity pacing, and activity
scheduling.
Patients (N=40)68 diagnosed with advanced cancer (i.e., ter-
minal disease, and the majority were diagnosed with metastatic
lung [N=12], pancreatic [N=7], or colorectal [N=6] cancers) Randomized Control Trials
and experiencing clinically significant symptoms of anxiety based
on the Hamilton Anxiety Rating scale (HAM-A) were random-
ized to either the CBT or wait-list control conditions. Patients in
the CBT condition experienced a 35% reduction in symptoms of
anxiety, while patients in the wait-list control group experienced
an 11% reduction. Patients in the CBT condition also experienced
greater reductions in self-reported symptoms of anxiety (Cohens
d = 0.84) and cancer-specific intrusive thoughts and avoidant
behaviors (Cohens d = 0.92) than those in the wait-list control ous trial, comparing a well-established treatment to BATD. They
condition. Importantly, the treatment was found to be feasible for
patients with advanced cancer; roughly 80% of patients completed
at least five CBT sessions over the course of the study.
CBT for Depression
Phase II Trials
Many interventions developed for unscreened cancer patients do
not explicitly contain key components of Becks cognitive therapy
such as cognitive restructuring, monitoring daily activities and
increasing time spent on enjoyable activities, and challenging
core beliefs. Thus, Brothers and colleagues69 combined elements
of a biobehavioral intervention (BBI)15 for cancer patients with the
core strategies of CBT for depression. The goal of the interven-
tion was to address the stress and disruption caused by the can-
cer diagnosis and treatments while also addressing the depressed
mood, distorted cognitions, negative core beliefs, and activity dis-
ruption that characterize MDD.
The trial tested the efficacy of the BBI/CBT intervention with
cancer survivors (N=36) diagnosed with MDD as determined
by the Structured Clinical Interview for DSM-IV (SCID). In the
12- to 20-session protocol, patients were taught components of the
biobehavioral intervention and cognitive therapy. Elements of the
BBI included learning progressive muscle relaxation, understand-
ing stress/anxiety/depression, seeking disease information and
managing treatment side effects, communicating with healthcare
providers, seeking social support, learning assertive communi-
cation skills and problem-solving, increasing exercise (rhythmic
walking), and discussing the stages of change and obstacles to
maintenance. Elements of CBT included behavioral activation,
cognitive restructuring, challenging core beliefs, and strategies
for successful maintenance.69
BBI/CBT significantly reduced depressive symptoms as mea-
sured by both the Beck Depression Inventory-II (BDI-II) and the
clinician-rated Hamilton Rating Scale for Depression (HRSD).
Also, clinically significant reductions in depressive symptoms, as
defined by a reduction of at least 7 points for the BDI-II and 6
points for the HRSD and post-treatment scores of 13 or less for the
BDI-II and 12 or less for the HRSD, were 61% using the BDI-II cri-
terion and 69% using the HRSD criterion. The data also suggested
that comorbid anxiety and increased cancer-specific stress posed
additional challenges for cancer patients with MDD. Patients with
Chapter56 cognitive and behavioral interventions 453
at least one comorbid anxiety disorder and patients with higher
cancer-specific stress had significantly higher levels of depressive
symptoms prior to starting treatment, which remained higher
throughout treatment. Significant improvements were also noted
in fatigue and mental health quality of life. These data suggest that
the CBT/BBI treatment can result in significant symptom relief for
patients with MDD.
Hopko and colleagues58 tested the behavioral activation com-
ponent of CBT with breast cancer patients. The protocol70 had
the goal of increasing activities with reinforcing environmental
contingencies. Behavioral activation (BATD) was compared to
problem-solving therapy (PST) in a randomized clinical trial71
with breast cancer patients (N = 80) with MDD as determined
by the Anxiety Disorders Interview Schedule-IV (ADIS-IV). PST
was chosen as the comparison condition to provide a more rigor-
hypothesized that BATD would result in greater reductions in
depressive symptoms and would demonstrate superior mainte-
nance of treatment gains at the one-year follow-up compared to
PST. During the initial sessions of the eight-session BATD pro-
tocol, patients kept a log of daily activities, which were rated on
a 4-point Likert scale for the level of reward or pleasure obtained
from each activity. Following monitoring, patients identified their
values and goals within many life areas (e.g., family, social, and
intimate relationships). Patients then developed an activity hier-
archy and progressively moved through the activities on their
hierarchy, with weekly goal setting and monitoring occurring
at each session. Additionally, three written exposures designed
to help patients reduce their anxiety toward being diagnosed
and living with cancer were integrated into three of the sessions.
Patients randomized to PST received eight one-hour individual
sessions and were treated with an adapted version of the PST of
Mynors-Wallis.72 A problem list was generated at the first ses-
sion, and patients worked on the problems in the weeks thereafter.
Similar to BATD, patients completed written exposures to help
process the experience of living with cancer. The overall goal of
PST was to help patients gain a sense of control and self-efficacy
while playing a more active role in increasing rewards from the
environment. In essence, though these therapies enlist different
strategies, both have a common purposeto modify behavior to
increase rewarding outcomes.
No significant differences were found between groups. Overall,
both treatments resulted in improvement across all outcome
measures, including self-reported depression (BDI-II), clinician
rated depression (HRSD), somatic anxiety, quality of life, and
social functioning. Patients also reported strong satisfaction with
treatment protocols. Clinically significant reductions in depres-
sive symptoms, with response defined as at least 50% reduction
from baseline and remission defined as scores 7 on the HRSD
and 10 on the BDI-II, were 70% for BATD and 81% for PST
using the BDI-II criterion, and 78% for BATD and 81% for PST
using the HRSD criterion. Treatment gains were maintained at
the 12-month follow-up, with those in the BATD experiencing
post-treatment improvements on a greater number of outcomes
compared to those in the PST arm. Follow-up analyses73 found
that both treatments significantly decreased suicidal ideation and
increased hopefulness at post-treatment, and this was maintained
454 Section X evidence-based interventions
at the 12-month follow-up. These data suggest that behavioral
activation and problem-solving therapy may improve psychologi-
cal outcomes in breast cancer patients with depression.
Nezu and colleagues57 accrued patients scoring in the clinical
range on the HRSD ( 14)to examine the efficacy of a PST. This
therapy, originally developed for depression, was revised for use
with adult cancer populations74 and involved 10 weekly individual
sessions during which patients were taught four tasks:(1)to better
define the problem, (2)to generate a number of solutions, (3)to
evaluate each solution and choose to implement the most optimal
one, and (4)to evaluate the final outcome after implementation of
the solution. Cognitive restructuring was included in the protocol
to assist patients with modifying dysfunctional cognitions, which
interfered with effective problem-solving.
Patients (N=150) were randomized to PST-only, PST with sig-
nificant other (PST-SO), or wait-list control (WLC). The protocol
for the PST-SO arm was similar to the PST arm, with the excep-
tion that an SO was included as a problem-solving coach to sup-
port the patients use of problem-solving strategies. PST and the
PST-SO were found to have robust, positive effects across depres-
sion, distress, and quality of life outcomes as compared to the
WLC. Using their criterion for clinically meaningful changes (i.e.,
post-treatment score of 2 standard deviations beyond the WLC),
91% and 90% of patients achieved significant change on the HRSD
in the PST and PST-SO arms, respectively. These findings were
maintained at the 12-month follow-up.
Savard and colleagues75 accrued patients with elevated depres-
sive symptoms as determined by the Hospital Anxiety and
Depression Scale depression subscale (HADS 7)or the BDI (i.e.,
15)to test CBT for depression. Women with metastatic breast
cancer (N=45) were randomized to individual CBT or a WLC.
Individuals in the CBT arm attended eight weekly, individual ses-
sions and three booster sessions. While the CBT protocol was con-
ducted as described by Beck,43 the protocol was modified to meet
the needs of patients with metastatic cancer (e.g., helping patients
realize that they can have life goals despite having an incurable
condition). Following treatment, patients receiving CBT experi-
enced a significantly larger reduction in depressive symptoms as
measured by both the HRSD and the BDI in comparison to the
WLC. Also, a greater percentage of patients in the CBT arm expe-
rienced symptoms below the clinical cutoffs for the HRSD (87% in
CBT vs. 58% in WLC), BDI (80% vs. 25%), and HADS depression
subscale (87% vs. 42%) post-treatment.
In an early study, Evans and Connis76 accrued cancer
patients (N = 78) with elevated scores ( 16) on the Center for ments in global quality of life and reduced negative self-referent
Epidemiological Studies Depression Scale (CES-D), and random-
ized them to CBT group, social support group, or no treatment.
The eight-week CBT group consisted of cognitive restructuring,
progressive muscle relaxation, and establishment of support-
ive relationships. The eight-week social support group involved
attending meetings in which discussion topics were decided upon
by the group members and a leader was present only to facilitate
discussions among the members and to encourage patients to
discuss their feelings about having cancer and to identify shared
problems. Interestingly, both the CBT group and social support
group had significantly lower depressive symptoms compared to
the control condition at post-treatment; however, only the social
support group continued to differ significantly from the control
condition on depressive symptoms at six months post-treatment.
As suggested in the above studies, the conceptualization of
CBT and its implementation with cancer patients with MDD or
elevated depressive symptoms has varied. However, these stud-
ies suggest that CBT, with or without all of the standard compo-
nents, is effective for MDD remission and/or reducing depressive
symptoms.
CBT for Anxiety and Depression
At least two studies have examined the efficacy of CBT on both
symptoms of anxiety and depression.77,78 In the first,77 patients
(N=80) with advanced cancer (67% metastatic) receiving pallia-
tive care participated if they received a score of 8 or above on the
Hospital Anxiety and Depression Scale (HADS). Nurses (N=15)
were randomized to receive training and deliver home-based CBT
or treatment as usual (TAU) to their respective patients. TAU
consisted of advice on symptom management and adjustment to
terminal illness, as well as emotional support, and was provided
to patients within their own homes. On average, patients treated
by CBT nurses received 5.7 sessions, and patients treated by TAU
nurses received 4.1 sessions. When compared to the TAU group,
those receiving the CBT reported significant reductions in symp-
toms of anxiety. At the 16-week assessment, the percentage of
anxious cases in the CBT arm was 19% versus 56% for the TAU
arm. Depressive symptoms declined over the course of the study
in both groups, though there were no group differences.
The second RCT was conducted with newly diagnosed head
and neck cancer patients.78 Patients remaining eligible met cri-
teria for clinician-diagnosed full or subthreshold post-traumatic
stress disorder (PTSD), MDD, and/or GAD. Patients (N = 35)
were randomized to receive CBT or supportive counseling.
Each condition consisted of six weekly 90-minute sessions plus
a one-month booster session. The CBT program included the
following components:behavioral activation, psychoeducation
tailored to the experience of head and neck cancer patients,
activity scheduling, breathing and relaxation training, imaginal
exposure to cancer-specific memories, graded in vivo exposure,
and cognitive restructuring. Relapse prevention was provided
during the booster session. Supportive counseling consisted
of psychoeducation about head and neck cancer, non-directive
supportive counseling for current concerns, and unstructured
problem-solving involving monitoring problems using an
unstructured diary.
Overall, both groups reported fewer symptoms of depression,
anxiety, and post-traumatic stress disorder, as well as improve-
appraisals post-treatment. On these measures the treatments were
equally effective, but more individuals in the CBT arm experi-
enced remission of symptoms than in the non-directive support-
ive counseling arm; for example, 56% versus 25%, 67% versus 20%
and 60% versus 25% of patients experienced improvements in
depressive symptoms, PTSD symptoms, and symptoms of anxi-
ety, respectively, by 12months.
The aforementioned RCTs suggest that CBT is an effective
intervention strategy for improving symptoms of both depres-
sion and anxiety. Additionally, CBT may be more effective than
TAU for improving symptoms of anxiety among individuals with
advanced cancer and may result in greater rates of remission of
depressive symptoms and symptoms of anxiety among newly
diagnosed patients.

SUMMARY
While it is known that both depression and anxiety are prevalent
among cancer patients, discussions about psychosocial difficul-
ties and referral to psychosocial services are uncommon. Even
when identified, patients may go untreated. New guidelines about
screening for depression and anxiety put forth by ASCO, as well as
the stringent new patient-centered quality standards for accredi-
tation of cancer clinics and hospitals put forth by the CoC provide
both the means and the incentive for identifying and providing
treatment or referrals to cancer patients.
Plausible, efficacious treatments exist. To the extent that both
CBT for MDD and GAD have been found to be effective in the gen-
eral population, CBT tailored to the unique needs of individuals
with a comorbid cancer diagnosis may be a successful treatment
approach. In recent years, CBT trials with cancer patients have
become more common. Among both screened and unscreened
populations, CBT interventions have been shown to reduce symp-
toms of depression and anxiety, as well as reduce cancer-specific
physical symptoms and improve quality of life. However, studies
have primarily focused on unscreened populations, and further
studies are needed among patients with comorbid psychopathol-
ogy. This would provide the understanding for making the best
choice among empirically supported treatments for the manage-
ment of anxiety and depression in cancer patients.
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 CHAPTER57
Cognitive Therapy
Stirling Moorey and Maggie Watson
BACKGROUND
Cognitive behavioral therapy (CBT) refers to a broad range of
psychological approaches that focus on the role of thoughts
and behaviors in creating and maintaining psychological dis-
tress. Problem-solving therapies, stress management, and
coping skills training are all examples of CBT applied to can-
cer. More recently, the UK National Institute for Health and
Clinical Excellence (NICE) review of Depression in Adults with
Chronic Health Problems recommended the use of CBT given
that [Section 7.5] ... the most substantial evidence base [for
moderate to severe depression] is for (use of) CBT.1 NICE also
advocates the development of a stepped care model of psy-
chological intervention for cancer patients, in which low inten-
sity/low skill psychological intervention is used for less complex
psychological needs, then stepped up to high intensity/high
skill therapeutic interventions as more complex needs become
evident (see Box 57.1).
This chapter describes a form of CBT based on Becks model.2,3
Cognitive therapy is a structured, problem-focused treat-
ment that places cognition, or consciously accessible thoughts
and beliefs, at its center. A cognitive formulation of problems
stresses how thoughts, behaviors, emotions, and physical sensa-
tions interact to create and maintain problems. The formulation
informs therapy that helps people question whether their cur-
rent view is accurate or helpful and then supports their explora-
tion of alternatives.
There are two ways in which cognitive therapy makes a con-
tribution to coping with cancer. First, many of the psychological
problems experienced by people with cancer share similarities
with problems for which we have effective cognitive therapy treat-
ments already available. In cancer the prevalence of depression
varies from 15% to 25% across studies and 8% to 24% in the non-
palliative setting, with major depressive disorder (MDD) being
around 13%.4 Nearly half of all cancer patients report some anxi-
ety, and this may be clinically significant in 23%.5 In addition to
treatments for these syndromes of depression, generalized anxi-
ety, panic, and health anxiety, CBT also has methods for common
cancer symptoms like fatigue and insomnia.6,7 Second, the gen-
eral theory and therapeutic approach of CBT, with its emphasis on
normalizing stress reactions, collaboration, and problem-solving,
is particularly helpful in understanding and treating adjustment
reactions.
A MODEL OF ADJUSTMENT TO
LIFE-THREATENING ILLNESS
The Personal Meaning of Illness and Death
The fundamental principle of any cognitive model is that our
interpretation of events determines how we feel and how we act.
Lazarus and Folkmans coping model is particularly relevant to
life-threatening illness.8,9 Many people, after an initial period of
distress and confusion, perceive cancer as a challenge, and employ
Box 57.1 The Stepped-Care Model of Psychological Interventions
STEP 4:Severe and complexa depression; risk to life; severe
self-neglect
Medication, high-intensity psychological interventions, elec-
troconvulsive therapy, crisis service, combined treatments,
multi-professional and inpatient care.
STEP 3: Persistent subthreshold depressive symptoms or
mild to moderate depression with inadequate response to ini-
tial interventions; moderate and severe depression
Medication, high-intensity psychological interventions, com-
bined treatments, collaborative careb and referral for further
assessment and interventions.
STEP 2:Persistent subthreshold depressive symptoms; mild
to moderate depression
Low-intensity psychosocial interventions, psychological inter-
ventions, medication, and referral for further assessment and
interventions.
STEP 1:All known and suspected presentations of depression
Assessment, support, psycho-education, active monitoring, and
referral for further assessment and interventions
a Complex depression includes depression that shows an inadequate
response to multiple treatments, is complicated by psychotic symptoms,
and/or is associated with significant psychiatric comorbidity or
psychosocial factors.
b Only for depression where the person also has a chronic physical
health problem and associated functional impairment (see Depression
in adults with a chronic physical health problem. NICE clinical
guideline 91).
NICE 2009. All rights reserved. Last modified October 2009, p.16.
 Chapter57 cognitive therapy 459

Challenge I can exert control Fighting spirit

Diagnosis of
life- threatening I dont know if I can
illness Threat Anxious
do anything about this preoccupation

Harm, loss, Helplessness/

No one can exert control
or defeat hopelessness

Its in the hands of Fatalism

God or the doctors

Figure57.1 The appraisal of the diagnosis of life-threatening illness.

a range of coping strategies. Others focus on the uncertainty and
feel anxious, while some see the diagnosis as loss of a hoped-for
future. This appraisal of the diagnosis challenge, threat, or loss
then leads to a secondary appraisal of the resources available to
the individual for coping with the illness.
If the diagnosis is seen as a challenge that can be met and the
prognosis is seen as hopeful, a positive adjustment style that has
been termed by some as a fighting spirit develops. If the diag-
nosis is seen as a loss or defeat and death is seen as inevitable, a
helpless/hopeless adjustment results. Aperson who focuses on
the uncertainty in his or her situation and the unpredictability of
the future becomes anxiously preoccupied with the disease. Two
further patterns of interpretation and coping may be found:fatal-
ism and cognitive avoidance. People who respond to the question
What can be done about this? by externalizing responsibil-
itygiving it up to the doctors, fate, or Godwill tend to have a
fatalistic approach to their illness. For some people, the threat may
be so great that they minimize, avoid, or even deny its severity.
Outright denial of the diagnosis is relatively rare, but minimiz-
ing the seriousness or impact of disease is common, and many
patients practice varying levels of avoidance. Figure 57.1 shows
these adjustment styles diagrammatically. Patients with helpless/
hopeless and anxious adjustment styles have greater emotional
distress than those with fighting spirit.10,11
Cancer not only challenges our hopes about our life and confi-
dence in our ability to cope, but also challenges our view of our-
selves and our world. Someone may be hopeful that they can be
cured of her illness, but the side effects of radical surgery may be so
difficult to bear that she becomes depressed. The cognitive model
asserts that the personal meaning of symptoms, treatment, or side
effects determines the emotional reaction. The reverberations of a
serious illness do not stop with physical effects. The reactions of
others and societys perception of the disease will also influence
coping. Aheavy smoker who develops lung cancer may be highly
critical of himself for contributing to the development of his ill-
ness, but this may be compounded by a partner who blames the
patient for getting ill, and the social stigma that may be involved.
One important difference between cognitive therapy with peo-
ple who have physical illness and those with psychiatric disorders
is the reality of the dangers they face. It is important to distin-
guish between unrealistic appraisals (e.g., a woman with early
stage breast cancer who becomes depressed because she believes
she will die within the next year) and realistic ones (e.g., a woman
with metastatic breast cancer feeling sad about not seeing her
children grow up). Where thinking is clearly unrealistic, standard
methods of challenging negative thoughts can be used; with more
realistic thoughts, the focus moves more to problem-solving and
coping strategies.
When coping fails, the cognitive model shows how the patient
can become trapped in vicious circles of thoughts, feelings, and
behaviors (Figure 57.2). Unhelpful thoughts lead to unhelp-
ful behavior, which confirms the negative appraisal (Table 57.1).
Therapy breaks these vicious circles.
Underlying Beliefs and Adjustment
We all live our lives with implicit assumptions that we are going to
live forever. Cancer challenges a persons beliefs about invulner-
ability and immortality.12 It also challenges beliefs about personal
competence, and that the world is predictable, fair, and control-
lable. The appraisal of the impact of cancer depends on beliefs
about the self, others, and the world, as well as beliefs about illness
and treatment. Early experiences shape core beliefs.3 If these are
overly positive and rigid, they may be shattered by the trauma of
a diagnosis of cancer.13 For some, cancer may confirm underlying
fears and activate core beliefs like I am vulnerable, The world
is dangerous and unpredictable, Others are unavailable. The
individual may have conditional beliefs and coping strategies to
mitigate these unconditional negative beliefs, and a diagnosis of
cancer will often lead people to try using coping strategies that
they have used in the past. For instance, someone who has had
Situation
Terminal cancer of the lung with cerebral
metastases and left sided weakness.
My life is over.
I cant do anything.
Why me?
Bad back
Deterioration Angry
Depressed
in ability to
walk
Lie in bed
Figure57.2 The cognitive model.
460 Section X evidence-based interventions

Table57.1 The Interaction of Negative Thoughts and Behaviors diagnosis and treatment of cancer there may be a period of hope
that the disease has been cured, which is then dashed if there is
Automatic Thought Unhelpful Behavior Consequence a recurrence.
If Icant do what Iused to Give up, ruminate Loss of pleasurable Basic Principles of CBT in Serious Illness
do, my lifes over. aboutloss activities, depression
CBT encourages self-efficacy, with the patient learning to iden-
Im different. Avoid people Reinforces feeling of tify and modify unhelpful thoughts, beliefs, and behavior. 5
being an outsider
Therapist and patient work collaboratively to target problems
Im no longer attractive. Neglect appearance Confirms negative and develop a shared conceptualization. Patients are helped to
self-image see their negative beliefs as hypotheses about themselves, which
are then tested using cognitive and behavioral techniques. This
approach is collaborative empiricism. 2 Sessions follow an
significant abuse during his childhood may believe that the world agenda set by patient and therapist together and include setting
is dangerous and unpredictable, that he is helpless, and that people and reviewing homework assignments that test beliefs and new
let you down. To cope with this, he may have developed the belief ways of coping.
If I can control my life I will be safe, using strategies of per-
fectionism and self-reliance, as described in the longitudinal or Modifications of CBT in Cancer
developmental model (Figure 57.3). Cancer confirms his fear that The therapy methods used are similar to standard cognitive
the world is dangerous and he is helpless, but the persons usual behavioral therapy techniques for treatment of anxiety and
coping strategy of overcontrol may no longer be effective because depression, but some modifications may be required to accom-
he will be forced to depend on others for treatment and care. He modate the effects of physical illness and the process of adjust-
can no longer be completely self-sufficient. ment (Box 57.2).
Therapy may need to be delivered in healthcare settings or
Adjustment and Coping Across the Course patients homes, rather than in the traditional outpatient clinic.
of Chronic Illness The latter can be facilitated by providing telephone-based CBT.11
Most people have positive beliefs challenged by the diagno- Fluctuations in the disease and demands of physical treatment
sis and feel vulnerable, helpless, and hopeless, but then find may disrupt the flow and timing of therapy sessions, which means
strength to deal with the stress. This adaptation is not static that therapy is often shorter and has more circumscribed goals.
but varies across the course of the disease. After the initial The aim is to achieve the maximum change with minimum

Physical abuse, separation

I am helpless and vulnerable. People let you down.

The world is dangerous and unpredictable.

If I can control my life I will be safe.

Perfectionism, overcontrol

Diagnosis of life-threatening illness

No longer able to exert control

Cognition Affect
Im out of control. I cant cope.
What will go wrong next? Anxiety
I must beat this at all costs.

Behavior Physiology
Desperately try to regain control Tension
Obsessively read about the illness Palpitations

Figure57.3 Longitudinal or developmental model.


Box 57.2 Modifications of Cognitive Therapy in Cancer
Sessions are less formal, more flexible, and more supportive.
Sessions may be briefer and adjusted to patients physical
status.
Therapy may need to be delivered in healthcare settings or
patients homes.
Techniques are adjusted to patients physical status.
Therapy includes family and health professionals.
Goals of therapy are more circumscribed.
Primary goal of therapy is to promote maximum change with
minimum intervention.
intervention wherever possible, working to regain previous cop-
ing strategies.
Attention to emotional and interpersonal issues is particularly
important with patients going through an adjustment process.
The therapist needs to achieve a balance between supporting
adjustment and promoting problem-solving. Managing maladap-
tive interactions with caregivers and fostering social support are
significant components of therapy.
Phase 1:Engagement and Conceptualization
In the first session the therapist establishes a contract with the
patient. Sometimes the aims of therapy are modest (e.g., in cases
involving terminal illness, severe fatigue, time restraints of a
liaison consultation), but in other cases (e.g., early stage disease,
less debility) there may time available to complete a full course
of CBT and even work on underlying beliefs. In the early sessions
the therapist establishes rapport and develops a shared concep-
tualization. There may also be a need to facilitate the adjustment
process. This can often be done simply by letting the patient tell
her story; developing a compassionate conceptualization also
helps to make sense of the confusing set of feelings experienced
by the patient.
A simple conceptualization mapping thoughts, emotions,
physical sensations, and behavior (Figure 57.2) can be very useful.
Goals are established that are appropriate for stage and severity of
disease. Basic self-monitoring of thoughts and/or behavior can be
set at this stage to clarify the conceptualization and demonstrate
the model to the patient.
Phase 2:Cognitive and Behavioral Interventions
These arise from the conceptualization. In Figure 57.2 we see how
a woman with terminal cancer has become locked into a vicious
circle of negative thinking and withdrawal. Ruminations about
her disease and death have led her to feel hopeless and angry. She
has physical symptoms of weakness and pain, which together
with hopelessness have led her to take to her bed, but the conse-
quence of this is that she feels more isolated, and becomes more
debilitated. The five areas model is an effective non-stigmatizing
way of showing how these systems interact. The five areas model
does not assume that any of the systems are primary. So it is
possible to start with the physical state (e.g., pain) as a given
and examine the patients thoughts and behaviors in response
to the physical reality of the illness. Once this conceptualization
Chapter57 cognitive therapy 461
is agreed upon, there are various options, which include using
the following:
1. Emotional techniques to facilitate anticipatory grieving;
2. Cognitive techniques to test the patients belief that her life is
over and she cant do anything;
3. Abehavioral experiment to test this negative belief.
COGNITIVE TECHNIQUES
The threat of cancer generates many negative thoughts, and the
questioning of these automatic negative thoughts is integral to
cognitive therapy (Box 57.3). Techniques used will differ, depend-
ing on the stage of the disease and prognosis. In disease with a
good prognosis patients can be helped to examine the evidence for
and against their beliefs that the future is hopeless. When progno-
sis is poor techniques that address the usefulness rather than the
rationality of thinking are more relevant. Acost benefit analysis of
thoughts often reveals them as ruminative rather than helpful in
solving problems or moving anticipatory grieving forward. If the
patient accepts that recurrent thoughts about death are not pro-
ductive they can schedule worry time during the day when they
allow themselves to ruminate, but at other times schedule more
constructive activities that give them a sense of control over their
life. Sometimes apparently realistic thoughts may overlie other
fears, for example, fears about what will happen to your family
when you die. Uncovering these fears allows the process of antici-
patory grieving to take place or allow more effective problem solv-
ing (see under behavioral techniques).
Some thoughts are centered not on disease but the implications
of the disease, regarding a persons self-esteem or competence.
People may feel stigmatized by their illness and may buy into
social rejection. They may blame themselves for developing their
condition. Often their sense of powerlessness comes from all or
nothing thinking, such as If Icant be the person Iused to be,
Im nothing, which leads them to focus on areas of loss rather
than areas where they still have control. Themes of guilt, shame,
anger toward self or others, and helplessness are often distorted
cognitions, and cognitive techniques can be used to test their
validity and functionality.
BEHAVIORAL TECHNIQUES
Behavioral techniques often provide rapid relief from symptoms
of distress and do not require the patient to be overly introspec-
tive or psychologically minded. The focus here is on providing
successful coping experiences that reinforce self-efficacy and
control.
Box 57.3 Questioning Automatic Thoughts
What is the evidence?
Is there an alternative way of looking at the situation?
What is the worst that could happen?
What is the effect of thinking this way?
What would Isay to a friend if he or she were in this situation?
462 Section X evidence-based interventions
The outcome may be relief from distress and a shift from nega-
tive thinking toward a more positive view of the patients ability
to cope. Negative beliefs are turned into hypotheses. The belief If
I cant do what I used to do, my lifes over (Table 57.1) can be ical rigor of both the original studies and reviews.16 Moyer has
tested with a behavioral experiment:the patient is asked to rate
the likelihood that she will get pleasure from doing some small
things over the next week. In the following session, the results of
the behavioral experiment are reviewed. The patient usually finds
that she got more pleasure than she predicted, and the vicious
cycle of inactivity begins to be broken. For helpless/hopeless
patients, scheduling activities can help to overcome inactivity and
demoralization. For depressed or more physically ill patients, large
tasks need to be broken down into small steps (graded task assign-
ment). Some ingenuity is needed to find meaningful activities for
patients who are very disabled or bedridden. Family members can
be recruited to make suggestions based on their knowledge of the
patient. For anxious patients, behavioral experiments can be set
up to test feared situations.
Problem-Solving
Problem-solving is another very powerful behavioral technique
and has been applied as a therapy in its own right. Rather than try-
ing to change thoughts, finding effective ways of coping or remov-
ing obstacles may be more likely to facilitate positive change. For
instance, in the case of a mother worrying about what will hap-
pen to her family when she dies, the problem-solving may take
the form of discussions with her partner about how to plan the
future. The patient can make her own wishes for the childrens
future clear by writing advice to her partner on how to handle
situations he may not have had as much experience in manag-
ing. More detailed description of CBT for cancer can be found in
Moorey and Greer, Horne and Watson, and Sage etal.9,12,13
Phase 3:Consolidating Coping and Ending Therapy
The length and form of this phase will depend on the therapeu-
tic contract. Time is often scarce, but if the therapist can see the
patient for 12 or more sessions, it may be possible to work on
underlying beliefs, which can be an opportunity for psychologi-
cal growth:the impact of the illness on the persons life can be
more fully assessed, the limitations of his or her more rigid beliefs
and coping strategies evaluated, and alternative beliefs generated
and tested. Briefer therapies are more concerned with coping in
the here and now. At the end of therapy, a blueprint is collab-
oratively constructed, which summarizes what has been learned,
what the patient still needs to do, what might cause a setback, and
how it could be managed.
EFFECT OF CBT ON QUALITY OF LIFE
CBT is the approach most frequently used in trials of psychologi-
cal therapy with people with cancer.14 Ameta-analysis by Osborn
etal. concluded that CBT was effective for depression (ES=1.2;
95% CI = 0.222.19), anxiety (ES = 1.99; 95% CI = 0.693.31),
and quality of life (ES=0.91; 95% CI=0.381.44).15 Quality of
life was improved at short-term follow-up (ES=1.45, 95% CI=
.432.47), but the effect size reduced to 0.26 (95% CI=.06.46)
at long-term follow-up. Reviews have tended to support the idea
that individual interventions were more effective than group, and
that therapy is more effective when directed at patients with high
levels of distress rather than all patients. This may be interpreted
as support for the more formulation-based approach described in
this chapter. Lepore and Coyne have questioned the methodolog-
provided a comprehensive review of the methodological qual-
ity of 25years of research in this area. There is a need to carry
out larger, more methodologically sound multicenter trials that
have sufficient power to establish the efficacy of psychological
interventions.
Trials have mainly used patients with early stage disease, but
three trials using a CBT approach have now been carried out
with patients with advanced disease. Edelman etal. used a group
approach, and Savard etal. used individual CBT, both for women
with metastatic breast cancer.17,18 CBT proved more effective than
a control group. Moorey et al. taught cognitive and behavioral
techniques to palliative care nurses and demonstrated an effect
on levels of anxiety in people with terminal illness treated in their
own homes.19
CONCLUSIONS
CBT has a substantial evidence base with a range of psychological
problems. Because it is brief, problem-focused, and collaborative,
it has potential as a useful tool and in a first aid form may be a
useful method for non-mental healthcare professionals.20,21 There
are encouraging signs from randomized controlled trials that it
is effective in the cancer setting both for early and advanced dis-
ease. As with all psychological therapies, the challenge is to iden-
tify what works for whom, and to find ways to disseminate skills
so that as many people as possible have access to evidence-based
therapy.22
REFERENCES
1. National Institute for Health and Clinical Excellence. The Treatment
and Management of Depression and Adults With Chronic Physical
Health Problems. CG91. London:National Institute for Health and
Clinical Excellence; 2009. www.guidance.nice.org.uk/cg91.
2. Beck AT, Rush AJ, Shaw BF, Emery G. Cognitive Therapy for
Depression. NewYork:Guilford; 1979.
3. Beck JS. Cognitive Therapy:Basics and Beyond. NewYork:Guilford
Press; 1995.
4. Krebber AM, Buffart LM, Kleijn G, Riepma IC, de Bree R, Leemans
CR, Becker A, Brug J, van Straten A, Cuijpers P, Verdonck-de Leeuw
IM. Prevalence of depression in cancer patients:a meta-analysis of
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5. Stark D, Kiely M, Smith A, etal. Anxiety disorders in cancer
patients:their nature, associations, and relation to quality of life.
JClin Oncol. 2002;20:31373148.
6. Gielissen MF, Verhagen S, Witjes F, Bleijenberg G. Effects of cogni-
tive behavior therapy in severely fatigued disease-free cancer patients
compared with patients waiting for cognitive behavior therapy:a
randomized controlled trial. J Clin Oncol. 2006;24:48824887.
7. Savard J, Simard S, Ivers H, Morin CM. Randomized study on
the efficacy of cognitive-behavioral therapy for insomnia second-
ary to breast cancer, part II:immunologic effects. J Clin Oncol.
2005;23:60976106.
8. Folkman S, Greer, S. Promoting psychological well-being in the face
of serious illness:when theory, research, and practice inform each
other. Psycho-Oncology. 2000;9:1119.
9. Moorey S, Greer S. Oxford Guide to CBT for People with Cancer.
Oxford:Oxford University Press; 2011.

10. Watson M, Greer S, Young J, Inayat Q, Burgess C, Robertson B.
Development of a questionnaire measure of adjustment to cancer:the
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Problem-focussed interactive telephone therapy [ProFITT] for cancer
patients:a Phase II feasibility trial. Psycho-Oncology. 22(7):14851491.
12. Horne D, Watson M. Cognitive behavioural therapies in cancer care.
In:Watson M, Kissane D, eds. Handbook of Psychotherapy in Cancer
Care. Chichester:Wiley-Blackwell; 2011.
13. Sage N, Sowden M, Chorlton E. CBT for Chronic Illness and Palliative
Care:AWorkbook and Toolkit. London:Wiley; 2008.
14. Moyer at al. Characteristics and methodological quality of 25years of
research investigating psychosocial interventions for cancer patients.
Cancer Treat Rev. 2009;35:475484.
15. Coyne JC, Lepore SJ, Palmer SC. Efficacy of psychosocial interven-
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16. Osborne RI, Demoncada AC, Feuerstein M. Psychosocial interven-
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17. Edelman CVI, Lockwood GA, Cunningham AJ. Psychological
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19. Moorey S, Cort E, Kapari M, etal. A cluster randomised con-
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Psycho-Oncology. 2013;22:19461952.
 CHAPTER58
Self-Management Support
Dena Schulman-Green, Edward
H.Wagner, and Ruth McCorkle
I need information so Iknow how to take care of myself,
including what to expect and what resources are available to
help me and my family.
56-year-old woman with Stage III ovarian cancer
A SHIFTING PARADIGM
More than 50years ago, the sociologist Talcott Parsons coined the
term sick role to describe and explain the social expectations of
an ill person. Ill individuals were exempted from social obliga-
tions and were expected to passively do what their health profes-
sionals ordered so as to recover from the illness and resume their
usual roles.1 This paradigm reflected the epidemiologic and social
realities of the time, including the predominance of acute illness
and the centricity of the hospital in healthcare. Such thought con-
tinues to influence the attitudes of health professionals and the
design of healthcare systems.
The paradigm is now shifting. With the introduction of various
Patients Bill of Rights24 and the Health Insurance Portability
and Accountability Act (HIPAA), 5 individuals are increasingly
aware of their right to understand and participate in their health-
care. Medical advances have enabled individuals with chronic ill-
ness to live longer and with better quality of life than previously.
Most chronically ill individuals want and are able to engage in
healthcare decision-making as one aspect of their multifaceted
lives. Going forward, individuals will be regarded by the health-
care system as active participants in their healthcare, with con-
sideration for their preferences about how and when they wish to
participate.
Even more important than political and social shifts has been
the recognition that didactic patient education does not work. The
traditional approach of medical care to assist patients in address-
ing the challenges of living with chronic conditions has consisted
of varying combinations of information and exhortation. Didactic
patient education, often modeled on professional education, was
the norm. Its premise was that if patients understood the relation-
ship between their decisions and behaviors and the pathophysiol-
ogy of their illness, they would change their behaviors accordingly,
especially if accompanied by dire warnings and strong recommen-
dations from their physicians. Considerable research has dem-
onstrated conclusively that this premise was incorrect. Didactic
information alone had minimal effects on behavior change and
disease outcomes;6 it is competent patient self-management that
acts as a strong determinant of health outcomes.
These data indicated the need for a new approach, recognizing
that patients are actually in control, and that professional sup-
port must acknowledge and reinforce the patients primary role
through genuine collaboration. This approach is based on three
premises: first, that adherence to professionals recommenda-
tions depends on patient agreement and engagement; second, that
patient activation and empowerment improve self-efficacy, which
may have an effect on health outcomes independent of its effect on
behavior change; and third, that enhancement of self-efficacy is
key to patients participation in self-management. These premises
have a somewhat cyclical or interdependent relationship, but they
begin with the engagement of patients as partners in management
of their chronic illness.
THE IMPORTANCE OF PATIENT
ACTIVATION
Patient activation to self-manage is key because living with chronic
illness requires skillful self-monitoring, as well as management of
medications, symptoms, comorbidities, and lifestyle. Chronic ill-
ness challenges patients with a daily barrage of decisions about
whether to take a medicine, what to do in response to stress or a
symptom, whether to keep a doctors appointment, what to eat,
and how much to exercise, to offer a few examples. As members
of their healthcare teams, patients can best speak to their prefer-
ences and ability to balance professional recommendations with
competing demands on their physical, emotional, social, spiritual,
and financial resources. As noted, patient engagement in negoti-
ating chronic illness influences their health and other important
outcomes.6
PROCESSES OF SELF-MANAGEMENT
The terms self-care and self-management describe the actions
and decisions that individuals take in dealing with their health and
illnesses. These terms are conceptually similar and have been used
interchangeably in the literature. Self-care broadly describes
healthy lifestyle behaviors or preventive strategies undertaken by

individuals to promote or to maintain health.7 Self-management
is perhaps more specific than self-care, and has been defined as
the individuals ability to manage the symptoms, treatment,
physical and social consequences, and lifestyle changes inherent
in living with a chronic condition. Efficacious self-management
encompasses (the) ability to monitor ones condition and to effect
the cognitive, behavioral and emotional responses necessary to
maintain a satisfactory quality of life.8
Corbin and Strauss were the first to identify processes
of self-management by specifying three goals or tasks of
self-management: taking care of the body and illness; adapting
to carry out normal activities and roles; and managing emotional
changes.9 Reflecting this work, a recent qualitative metasynthe-
sis of adults self-management in chronic illness identified three
main processes of self-management: focusing on illness needs,
activating resources, and living with a chronic illness.7 Focusing
on illness needs represents the tasks and skills necessary for indi-
viduals to take care of their bodies and of the illness-specific con-
cerns of a chronic illness. As part of this process, individuals learn
about the chronic illness, take ownership of their health needs,
and perform health-promoting activities. Activating resources
includes tasks and skills such as communicating with healthcare
providers, coordinating services, identifying and benefiting from
psychological resources, being part of a spiritual community,
obtaining and managing social support, and addressing social or
environmental challenges. Living with a chronic illness includes
tasks and skills related to coping with the illness and growing as
a person, for example, processing emotions and adjusting, as well
as to transitioning from a focus on illness needs to integrating
the illness into the context of the individuals life, for example,
meaning making. These processes, tasks, and skills illustrate the
broad range of self-management activities, as well as the ongoing,
dynamic, and personal nature of the self-management experience.
ACTIVATING PATIENTS AS
COLLABORATORS IN SELF-MANAGEMENT
The clearest differentiation of modern self-management from tra-
ditional patienthealth professional interactions is the introduc-
tion of patient-health professional collaboration, as manifested by
active patient participation in defining problems, making treat-
ment decisions, setting goals, and creating plans to achieve goals.10
Active patient involvement is not just politically or philosophically
correct; it is associated with better decisions, greater adherence to
treatment regimens, higher patient satisfaction, and better health
outcomes.6 Patients who understand the nature and importance of
their involvement in their care are invested in collaboration. Such
patients are said to be empowered or activated. Funnell and now considerable evidence that interventions directed at improv-
Anderson describe empowered patients as having the knowledge,
skills, attitudes, and self-awareness necessary to influence their own
behavior and that of others to improve the quality of their lives.11
AN EXAMPLE OF SELF-MANAGEMENT
SUPPORT
An example of self-management support that activates and empow-
ers patients is the Chronic Disease Self-Management Program
(CDSMP).6 Developed by Lorig and colleagues at Stanford
University, the CDSMP is a lay personled group program for
Chapter58 self-management support 465
individuals with any chronic illness, including cancer. The course
consists of six weekly 2-hour workshops offered in commu-
nity settings such as senior centers, churches, libraries, and hos-
pitals. Classes include teaching and coaching about important
self-management activities, including (1) dealing with problems
such as frustration, fatigue, and pain; (2)getting appropriate exer-
cise; (3)managing medications; (4)communicating with family,
friends, and health professionals; (5)getting adequate nutrition;
(6) decision-making; and (7) evaluating new treatments. Class
instructors and participants all have the same chronic illness,
creating a supportive environment that encourages participa-
tion, sharing, and empowerment. Participants have demonstrated
significant improvements in exercise, cognitive symptom man-
agement, communication with physicians, self-reported general
health, health distress, fatigue, disability, and social/role activi-
ties limitations.6 The program is also cost-effective.12 The CDSMP
exemplifies an approach to achieving the better health, better
healthcare, and better value that is part of modern health reform.12
CANCER SELF-MANAGEMENT
Evolution of Cancer Self-Management
Cancer self-management evolved out of self-management research
with other chronic conditions, such as arthritis, asthma, and
diabetes. A synopsis is available in an earlier version of this
chapter.13 Previously, healthcare professionals did not think of
self-management as germane to cancer care because medications
were largely provider-administered and lifestyle changes appeared
to be less critical to outcomes. However, as the use of oral che-
motherapy has increased and most drugs to prevent or amelio-
rate symptoms are patient-administered, attitudes have changed.
Many aspects of cancer care have shifted to outpatient settings, and
patients and their family members are assuming greater respon-
sibility for patient care at home. In addition, there is a growing
evidence base that behavior changes, such as increased physical
activity, have important effects on functioning and quality of life
among individuals with cancer.14 As more patients with cancer
self-manage their disease, there is increased demand for informa-
tion about treatment options and strategies for self-management.
These developments reflect the growing appreciation of the impor-
tance of cancer self-management and its demands.
Elements of Cancer Self-Management
SupportInterventions
Self-management interventions have been variously termed
psycho-educational, self-care, self-management support,
and, more recently, cognitive-behavioral interventions. There is
ing patients knowledge, skills, and confidence in managing their
cancer improves outcomes.15 These interventions share a common
premise with self-management support interventions for other
chronic conditions:that patients and their families have a major
role in addressing or managing these challenges, and their ability
to manage competently can be improved by information, empow-
erment, and other support.
In addition to variations in nomenclature, interventions vary
in what, when, and whom they target, as well as how. Many pri-
marily target symptoms associated with the cancer or with the
therapy. Some target emotional distress, while others primarily
466 Section X evidence-based interventions
focus on changing behavior, for example, increasing physical
activity to prevent or ameliorate fatigue. Although most cancer
self-management support interventions have a primary focus, they
often incorporate other components. In general, self-management
support interventions include basic information about the illness
and its treatment, information and coaching about skills needed
to manage the illness (e.g., using a pillbox), controlling symp-
toms (e.g., mouth care for mucositis), interacting with health
professionals (e.g., communicating unrelieved pain to provid-
ers), improving coping, reducing distress, and efforts to increase
patient self-efficacy. The education and coaching are generally
tailored to the needs and learning styles of individual patients,
encourage active patient participation in care, and involve some
form of problem-solving assistance. These basic elements of
self-management support have often been combined with specific
psychological or physical modalities, such as relaxation response
or exercise.
In terms of when and whom cancer self-management support
interventions target, interventions have been administered to
patients before therapy or before the onset of symptoms as preven-
tion, to patients experiencing symptoms or distress, or to patients
following therapy. Some interventions target patients alone, while
others target patients along with their family caregivers, for exam-
ple, couples-based interventions. Interventions likewise vary in
how they reach their targets. Modes of delivery include nurse-led,
peer-led or peer support (in-person, telephone, or Internet-based),
and self-guided (usually Internet-based). Because intervention
elements (content, timing, delivery method) are mixed, the evalu-
ation of self-management interventions is challenging because it is
difficult to assess the operative mechanisms.
Examples of Cancer Self-Management
SupportInterventions
Examples of cancer self-management interventions may illustrate
various strategies and mechanisms of cancer self-management.
We have discussed the CDSMP program as an example of a
peer-led and peer support intervention. Below, we provide exam-
ples of nurse-led interventions, which is the predominant delivery
method in cancer self-management support, followed by a sum-
mary of emerging Internet self-management support.
The PRO-SELF program is an extensively tested intervention
that targets symptoms of cancer and its treatment. The program
involves nurse coaching with patients and their families. Content
consists of information to assist patients in managing the can-
cer treatment experience, including basic information about the
disease and its treatment, symptoms, and approaches to symptom
management. In addition to information, patients receive coach-
ing in the skills necessary to manage symptoms, for example, opi-
oid use for pain, and problem-solving assistance. The PRO-SELF
program has been evaluated in multiple randomized trials, and,
among other results, has been shown to be efficacious in improv-
ing cancer pain management in patients and family caregivers.16,17
McCorkle and colleagues have developed and studied nurse
interventions to help patients with cancer and their family care-
givers manage the broad impact of the illness and its treatment.
Delivered in the home by advanced practice nurses, the inter-
ventions have involved various activities:assessment of physical,
psychosocial, and functional health status; teaching, support, and
counseling; provision of direct nursing care if needed; assistance
in accessing community resources; and coordination with other
healthcare professionals and settings. In a series of randomized
trials, a home nurse intervention helped patients with lung can-
cer to maintain independence longer and reduced rehospitaliza-
tions,18 reduced distress among the spouses of patients dying of
lung cancer,19 and improved survival among older postsurgical
patients with cancer.20
Given and colleagues tested a cognitive-behavioral interven-
tion among solid tumor patients undergoing chemotherapy that
began with collaborative problem identification by patient and
nurse.21 The nurse would then propose interventions that would
be collaboratively evaluated, and an action plan was developed.
These nurse-patient interactions were supported by classes on
self-management, problem-solving, and communication with
health professionals. Those receiving the experimental inter-
vention reported significantly less severe symptoms at 10- and
20-week follow-up. Related interventions have been shown in
randomized controlled trials to improve mood and vigor among
patients with malignant melanoma, 22 to reduce psychological
distress after radiotherapy,23 and to improve sexual function and
reduce worry among patients with prostate cancer.24
Although these three interventions vary in target problem,
patient population, counseling strategies, and outcomes, they dem-
onstrate that assessment, monitoring, and teaching by a trained
oncology nurse impacts critical physical and psychological cancer
outcomes, and they solidify the evidence base of nurse coaching
interventions to provide beneficial self-management support to
patients with cancer. Work remains to educate oncology nurses
outside research settings about modern self-management support
and their role in it.
Internet-Based Self-Management Support
Internet-based self-management support is a relatively new
alternative to in-person or telephone nurse- or peer-led sup-
port programs. Like their in-person or telephone counterparts,
Internet-based programs can assist individuals to locate and share
disease management information and coping strategies, often
interactively through electronic messaging, discussion boards,
or blogs. Computer applications and social media, as delivered
through smartphones, iPods, or tablets, are another means of
providing self-management support. Advantages include their
ready accessibility and availability, their anonymity, their con-
sistency of delivery, and their potential cost-effectiveness. 25
While not the ideal mechanism for all, Internet-based interven-
tions can extend self-management support to individuals for
whom engagement is difficult during business hours, to those
in rural areas, and to those who respond well to Internet-based
platforms. Access to these interventions of course requires an
individual to have the appropriate device(s) and to be computer
literate.
While the relative efficacy of Internet-based support interven-
tions is just beginning to be explored, there is growing evidence
that they are efficacious for individuals with cancer. 26 For exam-
ple, Project Onward, an Internet-accessed psychosocial interven-
tion geared toward cancer survivors in the post-treatment phase,
was successful in reducing depressive symptoms, 27 a difficult
outcome to affect even with in-person modalities. Internet-based
self-management support is a burgeoning delivery method with
exciting possibilities for cancer self-management.

Challenges in Providing Cancer
Self-ManagementSupport
As self-management is best started upon diagnosis of an illness,
ideally, self-management support should be offered concurrently
and should continue as long as the illness impacts an individu-
als life. There are particular challenges to delivering consistent
and potentially long-term self-management support to individu-
als with cancer. These challenges primarily stem from the mul-
tiple health professionals and handoffs involved in cancer care,
the complexity and rapidly changing nature of the information
necessary to respond to patient questions, and the high levels of
psychosocial distress. In addition, the quality of communica-
tion, investment in self-management, and personal dynamics
among parties involved in a patients self-management (patient,
family member[s], various health professionals) can help or hin-
der processes of self-management. Self-management support also
requires ongoing reinforcement, which is to be expected given the
undulating nature of most chronic illnesses and ever-evolving
medical treatment and life circumstances. This expectation
of normal variability has led to a growing interest in mak-
ing self-management support a routine part of medical care for
chronically ill individuals.28
Facilitation of Self-Management Support
A useful framework for delivery of self-management sup-
port is the 5 As to behavior change. This strategy, derived
from smoking cessation research, has recently been applied to
self-management support in general.29 Table 58.1 describes the 5
As for self-management support:assessment, advice, agreement,
assist, arrange. These five functions may be divided among differ-
ent members of a patients care team. Areceptionist, medical assis-
tant, or even a computer in the waiting room could administer a
standardized assessment questionnaire to patients, and then sum-
marize the results. Aclinician(s) provides advice or information.
Responsibility for assuring that patient perspectives are heard and
agreement is truly bilateral rests primarily with the clinician, as
it may be difficult for patients to challenge strong physician rec-
ommendations. The clinician would then assist the patient by col-
laborating with the patient on the establishment of goals and an
action plan. The clinician or a social worker might help patients to
Table58.1 The 5 As of Self-Management Support
Assess Assessing patients for their information needs and learning
preferences, behaviors, psychosocial distress and problems,
progress toward self-management goals, and self-efficacy
Advise Providing patients with relevant, scientifically grounded
information delivered in accord with their learning preferences,
culture, and literacy
Agree Finding common ground between the patients perspective and
professional advice
Assist The collaborative process of defining problems, setting goals to
deal with problems, developing action plans to achieve goals, and
revising over time
Arrange Helping patients identify and link with needed services
Reprinted with permission from Glasgow RE, Emont S, Miller DC. Assessing delivery of
the five As for patient-centered counseling. Health Promot Int. 2006 Sep;21(3):245255.
Chapter58 self-management support 467
identify and arrange referrals to resources that can help patients
achieve their goals.
To encourage self-management, both facilitators and barri-
ers to self-management must be acknowledged and addressed.30
Identification of facilitators and barriers should be a part of each
step of self-management support described in the 5 As frame-
work or similar models. Common facilitators of self-management
at the organizational, health professional, and patient levels are
described in Table 58.2. Recognizing what may help or hinder
an individuals self-management and devising plans to circum-
vent actual or potential barriers are crucial to setting up success-
ful self-management. Self-management support should translate
into plans that can be realistically integrated into individuals
lifestyles. An individually tailored approach is a hallmark of
self-management. It is in the development of self-management
plans that self-management theory meets practice.
NEW DIRECTIONS IN CANCER
SELF-MANAGEMENT SUPPORT
Research in chronic illness self-management is rapidly grow-
ing, with cancer self-management now a main focus. 31 There
are a number of considerations as to the nature and mechanics
of cancer self-management support for various populations as
self-management support evolves. The increasing role of family
caregivers in patient self-management urges an awareness not
only of the specific needs of patients and family caregivers as
separate partners in self-management, but also of their needs as
a self-management unit. As noted, supportive interventions may
be geared toward patients, family caregivers, or patient-family
caregiver dyads. Interventions that target either patients or fam-
ily caregivers should be designed with the acknowledgment that
these parties do not self-manage in isolation; rather, patient-family
dynamics should be considered.
Delivery of self-management support must also take into
account different values, practices, and access issues in patients
and families of different backgrounds and compositions. For
example, much work remains in assessing the efficacy and accept-
ability of self-management support interventions among vari-
ous racial and ethnic groups who experience and manage cancer
differently. Such work would assist in reducing healthcare dis-
parities. Another example is in regard to older patients and their
family caregivers. How can we set up productive self-management
among dyads whose members may each have their own set of
self-management challenges? In this common situation, it may
be difficult to determine who is the patient and who is the fam-
ily caregiver. Supportive interventions for such dually vulner-
able dyads will be particularly important as the Baby Boomers
age. Incorporation of long-distance family caregivers into
self-management, usually adult children of patients who do not
live geographically close to the patient, is another challenge of
modern healthcare.
For individuals with chronic illness, early introduction of
self-management strategies may assist in establishing skill sets
and habits that can serve as a practical and emotional founda-
tion to more complex self-management activities that may sub-
sequently be needed. For those with serious and progressive
chronic illnesses, the timely integration of palliative care can help
to improve understanding of their illness, disease management,
468 Section X evidence-based interventions

Table58.2 Facilitators of Self-Management

Organizational supports and Dedicated time and place in healthcare environment

strategies (healthcare system level)
Healthcare provider strategies
Patient-directed strategies used by
healthcare providers
Staff education (communication, motivational interviewing, interventions regarding behavioral change, etc.)
Interdisciplinary clinics, multidisciplinary staff
Collaborative care models
Allocated healthcare resources (e.g., financial resources, staff)
Improve partnership and collaboration with patients
Continuing education and skills development (interprofessional education, communication skills, empathy skills, etc.)
Ensure patients access to information, based on individual needs and resources
Provide patient education (information regarding disease, management, and resources) with printed and online materials
regarding illness, treatment, and self-management as well as educational sessions (individual and/or group)
Develop holistic approach to patient care
Understand barriers/motivation to develop individually targeted interventions (individualized health plan), assess, and
address emotional aspects and barriers
Regular follow-ups in person or phone contacts with healthcare providers (assessment, discussion of outcomes with
facilitators and barriers, providing feedback and support)
Facilitate ongoing peer support, e.g., groups, online forums
Involve caregiver/family member according to patient preference

Reprinted with permission from Novak M, Costantini L, Schneider S, Beanlands H.Approaches to self-management in chronic illness. Seminars Dialysis. 2013 MarApr;26(2):188194.

and, as emerging data show, 32 survivorship. Self-management
support is of particular importance for patients and fami-
lies coping with terminal illnesses to help define goals and
redefinehope.
Self-management is appropriate across the spectrum of chronic
illnesses and the people affected by them. Cancer self-management
has come of age. Our challenge is to optimize self-management
support for individuals with cancer and those who care for them
through patient activation, development of patient self-efficacy,
and collaborative relationships.
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 CHAPTER 59
Building Problem-Solving Skills
Arthur M.Nezu, Christine Maguth
Nezu, and Kristin E.Salber
RELEVANCE OF PROBLEM-SOLVING
THERAPY FOR CANCER PATIENTS
Cancer has the potential to affect nearly every aspect of an individ-
uals life. In addition to creating new stressors that directly impact
quality of life,14 cancer and its treatment can also significantly
increase the stressful nature of even routine daily tasks. Within
the problem-solving model of stress, the diagnosis and treatment
of cancer is therefore conceptualized as a major life event, and as
the cause of any number of stressful daily problems (e.g., social,
sexual, or financial difficulties), 5 which in turn are believed to
increase the probability that one will experience significant psy-
chological distress. An individuals problem-solving ability is con-
ceptualized as an important moderator of this relationship. This
has been supported by research in which cancer patients who were
characterized as ineffective problem solvers reported higher levels
of depressive symptoms than those characterized as effective prob-
lem solvers, even when controlling for severity of cancer-related
stress.1,6 The major implications of this treatment model sug-
gest that problem-solving therapy (PST) should improve cancer
patients coping abilities, and should therefore lead to decreased
distress and improved quality of life.
RESEARCH EVALUATING PST
FORCANCERPATIENTS
Numerous researchers have adapted PST specifically for use with
cancer patients, and have evaluated its efficacy in decreasing
emotional distress, reducing symptom limitations, and improv-
ing quality of life. For example, in the randomized clinical trial
entitled Project Genesis, treatment was based on the empirically
validated PST manual originally developed for major depressive
disorder7 and revised for use with oncology patients.6 In this trial,
adult cancer patients experiencing significant distress were ran-
domly assigned to receive PST, to receive PST alongside a signifi-
cant other (e.g., spouse/life partner or adult child), or to a wait-list
control. 8 At post-treatment, patients in both treatment condi-
tions demonstrated improved quality of life, decreased psycho-
logical distress, and decreased depressive symptoms as compared
to individuals in the control condition. These improvements were
significantly correlated with improvements in problem-solving,
suggesting that problem-solving was the mechanism of action
behind the treatment effects. Importantly, improvements in dis-
tress, quality of life, and depression were maintained at six-month
and one-year follow-up assessments, and appeared to be enhanced
by the inclusion of a significant other in treatment.8
Given and colleagues developed a cognitive behavioral
symptom management intervention strongly grounded in
problem-solving theory. The intervention was designed to be
provided by trained nurse interventionists; it focused on help-
ing patients to reframe their beliefs regarding symptom control,
and on generating a list of strategies that could be implemented in
order to cope with specific cancer-related problems (e.g., fatigue,
alopecia, pain, depression, insomnia). In a series of randomized
trials, the researchers examined the impact of this intervention
on depression, symptom severity, and symptom limitations.9,10,11
In the first of these studies, patients undergoing a first course
of chemotherapy were randomly assigned to receive usual care,
or to receive the intervention alongside a designated family care-
giver.9 Patient-caregiver dyads in the treatment group received
10 sessions (in person or over the telephone) over the course of
20 weeks. After 10 weeks, patients receiving the intervention
reported a reduction in symptom limitations by a statistically
significant 13 points more than the control group.10 Differences
between the intervention and control groups were even more pro-
nounced at 20 weeks.
Although a main treatment effect was observed for symptom
limitations, the intervention appeared to influence depression
differentially over time.9 Midway through treatment, the inter-
vention appeared to influence depression only indirectly, by
improving patients management of physical symptoms. However,
at week 20, a significant main effect of the intervention on depres-
sion was observed. Parenthetically, the authors also noted that the
intervention appeared to be most helpful for younger patients,
possibly because they had less comorbidity than older patients,
and thus had the potential to achieve greater functional abilities
once cancer-related limitations were effectively managed.10
In a subsequent study, adults with advanced cancer were ran-
domly assigned to receive usual care or the intervention, delivered
as two face-to-face and three telephone sessions over 10 weeks.
Symptom severity at baseline and group assignment were each
found to be significant predictors of symptom severity at 10 weeks.
The positive effect of the intervention on symptom severity per-
sisted at the 20-week follow-up, suggesting that patients continued

to successfully implement problem-solving strategies after treat-
ment was complete.11
Mishel etal. assessed the efficacy of an uncertainty manage-
ment intervention, which combined problem-solving and a cog-
nitive reframing strategy, as a means of managing uncertainty
and improving symptom control among men with localized pros-
tate cancer.12 Participants were randomly assigned to one of three
conditions: individual treatment provided over the telephone,
treatment supplemented with the inclusion of a family member,
and a medical treatment as usual control. At the four-month
post-baseline assessment, participants in both treatment groups
had improved significantly in problem-solving, cognitive restruc-
turing, and control of incontinence. This improvement in symp-
tom management is particularly noteworthy, given the fact that it
occurred early on in medical treatment, when cancer treatment
side effects are typically most severe.12
In a similar study, Allen and colleagues compared PST to a
no-treatment control among women who had recently begun
chemotherapy for breast cancer.13 The treatment consisted of
two in-person and four telephone sessions delivered by an oncol-
ogy nurse, and was designed to encourage women diagnosed in
mid-life to cope more effectively with cancer-related problems of
daily living. At the eight-month assessment, analyses revealed an
interaction effect in which women in the treatment group who
were characterized as good problem solvers at baseline reported
fewer physical, psychosocial, marital, and sexual difficulties than
did their counterparts in the control group. The opposite pat-
tern emerged among the subset of women initially characterized
as poor problem solvers, with participants in the treatment
group reporting more problems than those in the control group.
Qualitative feedback suggested that poor problem solvers felt
overwhelmed at the prospect of having to implement PST prin-
ciples in their daily lives after only one in-person session, and
that this distress may have impeded their ability to solve prob-
lems. The researchers concluded that these results support the
overall efficacy of PST in managing cancer-related problems, but
also suggest that treatment should be matched with an individu-
als current ability level. Although a brief, telephone-based PST
intervention appears to be helpful to cancer patients of average
pre-treatment problem-solving ability, more intensive in-person
PST might be necessary in order for individuals with particularly
poor problem-solving abilities to achieve the same results.
PST has also been incorporated into several stepped-care
approaches for the prevention and treatment of depression among
cancer patients. The program Depression Care for People with
Cancer (DCPC) consists of psychoeducation on depression,
problem-solving training, and guidance in deciding whether to
try an antidepressant medication.14 When compared to patients
receiving usual care, depressed patients who were randomly
assigned to receive DCPC had significantly greater improvements
in depressive symptoms, and were more likely to achieve complete
remission from major depressive disorder. Moreover, these differ-
ences were maintained at a 12-month follow-up assessment.
A similar stepped-care approach, Alleviating Depression
Among Patients with Cancer (ADAPt-C), provides depressed can-
cer patients with either PST or antidepressant medication accord-
ing to patient preference, as well as the opportunity to try their
non-preferred treatment if they do not responded to treatment
within four to eight weeks.15 When evaluated in a randomized
chapter 59 building problem-solving skills 471
clinical trial, ADAPt-C was found to be efficacious at treating
depression, with 63% of the treatment group and only 50% of
the usual care group experiencing a 50% reduction in symptoms.
Among patients who experienced this improvement, individuals
in the ADAPt-C group were more likely to maintain these gains
at 24months than were individuals in the control group, and were
also more likely to seek treatment if they experienced a recurrence
of major depression.
Although the stepped-care designs of the DCPC and ADAPt-C
programs make it difficult to isolate the effects of PST in the
absence of antidepressant medication, it is notable that ADAPt-C
participants overwhelmingly chose PST over medication. In addi-
tion, at a six-month follow-up, 84.4% reported that they were
satisfied to extremely satisfied with PST, while only 40.5%
of respondents reported similar satisfaction with antidepressant
medication.16
PST FOR FAMILY CAREGIVERS
Family members who participate in the day-to-day care of cancer
patients can experience frequent problems as a function of this
role, and can therefore experience significant distress. Providing
PST to family caregivers can potentially improve their abil-
ity to cope effectively, subsequently impacting quality of life of
both patients8 and caregivers. Houts and colleagues adapted the
Prepared Family Caregiver Course17 from the then DZurilla and
Nezu18 PST model. This intervention teaches family caregivers of
cancer patients to (a)identify and understand a problem; (b)rec-
ognize when to get professional help; (c)identify what can be done
to deal with, as well as prevent, a problem; (d)identify obstacles
when they arise and plan to overcome them; and (e)carry out and
adjust the plan. Other PST manuals19,20 developed for caregiv-
ers use the acronym COPE to highlight various problem-solving
operations (creativity, optimism, planning, expert information).
McMillan and colleagues evaluated the COPE protocol in a
randomized controlled trial focusing on the family caregivers of
cancer patients in hospice care.21 Patient/caregiver dyads were
randomly assigned to one of three groups:(a)standard hospice
care, (b) standard hospice care plus three supportive visits, or
(c)standard hospice care plus a three-session COPE intervention.
At the 30-day follow-up, COPE was associated with significant
improvements in caregiver quality of life, burden of patient symp-
toms, and caregiver task burden, as compared to the other two
conditions.21 In addition, although the intensity of patients symp-
toms did not decrease, symptom distress significantly improved
in patients whose caregivers participated in the intervention.22
These results are in keeping with those of Project Genesis, which
suggested that including supportive significant others in PST for
cancer patients may lead to better psychological outcomes for the
patients themselves.8
PROBLEM-SOLVING THERAPY:OVERVIEW
OF CLINICAL GUIDELINES
The remainder of this chapter provides a brief overview of the
clinical components of contemporary PST. Note that our model
of PST has been continuously revised to incorporate research
findings from several fields, including clinical psychology, cog-
nitive psychology, and affective neuroscience, 23 using previous
472 Section X evidence-based interventions
versions1,18,24 as a base. Consequently, the model outlined below
contains components not included in earlier studies of PST for
cancer patients. However, this updated approach is strongly rec-
ommended for use with cancer patients, and is currently being
evaluated for this purpose in a randomized clinical trial.
Conceptually, we suggest that several major obstacles can
potentially exist for a given individual when attempting to suc-
cessfully resolve real-life stressful problems. These include the
following:
a. Cognitive overload, particularly under stressful circumstances;
b. Limited or deficient ability to engage in effective emotional
regulation;
c. Biased cognitive processing of various emotion-related informa-
tion (e.g., negative automatic thoughts, poor self-efficacy beliefs,
difficulties in disengaging from negative mood-congruent auto-
biographical memories);
d. Poor motivation due to feelings of hopelessness;
e. Ineffective problem-solving strategies.
PST is composed of four major problem-solving tool-
kits that address the above barriers. These toolkits include
(a) Problem-Solving Multitasking, (b) the Stop, Slow Down,
Think, and Act (S.S.T.A.) method of approaching problems while
under stress, (c) Healthy Thinking and Positive Imagery, and
(d)Planful Problem-Solving.
Note that it is not always necessary to teach a given individual
all of the strategies across all four toolkits. Decisions regarding
which components of PST to emphasize are greatly dependent on
the assessment of a patients unique problem-solving strengths
and weaknesses, as well as the therapists clinical judgment
regarding other factors, such as the anticipated length of treat-
ment, the severity of the patients symptoms, and the subsequent
progress (or lack of) being made.
Problem-Solving Multitasking:Overcoming
CognitiveOverload
Solving complex problems and making effective decisions often
involve manipulating many pieces of information simultaneously,
and are therefore limited by the capacity of working memory. The
Problem-Solving Multitasking toolkit is designed to prevent the
cognitive overload that may occur when ones working memory
is overly taxed by attempts to solve a stressful problem. This tool-
kit teaches individuals to use three multitasking enhancement
skills: externalization, visualization, and simplification. These
skills are conceptualized as fundamental components of effective
problem-solving, similar to skills that are foundational to physi-
cal exercise, such as proper breathing and stretching techniques.
Externalization involves displaying information externally
whenever possible, so as to reduce the burden on ones working
memory. With more cognitive resources available, this allows one
to focus more energy on other aspects of problem-solving, such
as creatively thinking of various solutions. Externalization strate-
gies include writing ideas down, making lists, drawing diagrams,
charts, or maps, and audiotaping ideas. The visualization tool is
presented as using ones minds eye or visual imagery to (a)help
clarify the nature of problem, (b)practice implementing a solution,
and/or (c)reduce negative arousal (i.e., utilize guided meditation
to imaginally experience a peaceful vacation). Simplification
involves breaking down complex problems into more manageable
smaller problems, and translating complex, vague, and abstract
concepts into more simple, specific, and concrete language.
Stop, Slow Down, Think, and Act (S.S.T.A.):
Overcoming Emotional Dysregulation and
MaladaptiveProblem-Solving Under Stress
This toolkit is designed to foster adaptive emotional regulation
skills, and is presented as an overarching map for patients to
follow when faced with problems that provoke strong emotional
reactions. It teaches them a series of steps designed to improve
their ability to regulate (rather than eradicate) negative
emotional arousal. By reducing emotional arousal, these steps
reduce the likelihood that individuals will engage in impulsive/
careless attempts at problem-solving, and gives them the oppor-
tunity to more effectively implement a systematic approach
(i.e., to be able to optimally use planful problem-solving skills).
When treating patients for whom a primary goal of therapy is
the reduction of clinically significant emotional distress (e.g.,
depression, suicidal ideation, generalized anxiety), this toolkit
is especially important. Training individuals in this method is
also useful in preventing the exacerbation of existing emotional
concerns.
The S.S.T.A. method first teaches patients to be more aware
of when and how they experience negative emotional arousal.
Specifically, they are taught to be more emotionally mindful by
noticing changes in mood (e.g., sadness, anger, tension), as well as
changes in physical (e.g., headache, fatigue, pain), cognitive (e.g.,
worry, thoughts of negative outcomes), and behavioral (e.g., yell-
ing, crying, urge to run away) indicators. Additional training may
be necessary for individuals who demonstrate difficulty in accu-
rately identifying and labeling emotions. Next, patients are taught
to stop, that is, to engage in behaviors to prevent the initial arousal
from strengthening into an intense emotion, with full-blown
negative affect, negative thinking, state-dependent negative mem-
ories, and maladaptive behaviors. Strategies to put on the brakes
include shouting out loud, raising ones hands, or holding up a
stop sign when one becomes aware of negative emotional arousal.
Patients are then taught to slow down, that is, to decrease the
rate at which ones negative emotional arousal can occur. Several
specific slowing down techniques are introduced and practiced
in session, so that patients have a choice among potentially effec-
tive strategies. These include diaphragmatic breathing, counting
down from 10 to 1, guided imagery or visualization, and fake
yawing (in keeping with recent neuroscience research supporting
the efficacy of yawning as a means of reducing stress and enhanc-
ing cognitive awareness23). Patients are also encouraged to think
of additional strategies, and to utilize strategies that they have
found helpful in the past.
It is only after patents have slowed down that they are encour-
aged to progress to the thinking and acting steps of S.S.T.A. In these
steps, an individual applies four specific planful problem-solving
tasks to the stressful problem that initially evoked the negative
emotional reaction. These tasks (defining the problem and setting
realistic goals, generating alternative solutions, decision-making,
solution implementation and verification) are described in the
Planful Problem-Solving toolkit.

Healthy Thinking and Positive Imagery:Overcoming
Negative Thinking and Poor Motivation
This toolkit is designed to specifically address problem orien-
tation. That is, it is geared toward decreasing negative think-
ing and feelings of hopelessness, and increasing optimism and
self-efficacy. It teaches patients that how one thinks can affect
how one feels, and includes a variety of cognitive change tech-
niques similar to cognitive restructuring strategies. For example,
the toolkit teaches individuals to identify negative beliefs and
determine whether they need to be changed by practicing the
ABC Model of Thinking (where A=the activating or trigger-
ing event, B=a given belief or attitude, and C=the emotional
consequence of holding that belief, as compared to reality). To
challenge negative beliefs and readjust their problem orientation,
patients are taught a series of healthy thinking rules (e.g., noth-
ing is 100% perfect; problems are a normal part of life; every-
one makes mistakes; every minute Ispend thinking negatively
takes away from enjoying my life), and realistically optimistic
self-statements (e.g., I can solve this problem; Im okayfeel-
ing sad under these circumstances is normal; I cant direct the
wind, but Ican adjust the sails; difficult and painful does not
equal hopeless!).
The PST therapist can also choose to conduct a reverse advo-
cacy role play exercise with patients who have particular dif-
ficulty changing their negative thinking. In this exercise, the
therapist temporarily adopts the patients maladaptive attitude,
and the patient is instructed to adopt the role of counselor,
providing reasons why the belief is incorrect, maladaptive, or
dysfunctional. This process of identifying, verbalizing, and pro-
viding justification for more adaptive beliefs toward problems
can be the first step in helping the individual to personally adopt
such an orientation.
The final tool in this toolkit is the use of visualization to enhance
motivation by helping an individual to sensorially experience what
it feels like to successfully solve a difficult problem. The focus of
the exercise is to help patients to create the experience of success
in their minds eye, to see the metaphorical light at the end of
the tunnel, and vicariously to experience the potential reinforce-
ment to be gained by reaching a goal. In contrast to the type of
visualization utilized in the Multitasking toolkit (e.g., practice
carrying out a solution), in this exercise patients are instructed
to focus on the feeling of having already solved a problem and not
on the specific steps required to solve it. This activity encourages
individuals to develop positive associations (in the form of affect,
thought, physical sensations, and behavior) with solving major
problems, which can serve to increase motivation, decrease hope-
lessness, and decrease dependence on avoidant problem-solving.
Planful Problem-Solving:Fostering
EffectiveProblem-Solving
This toolkit provides training in the four planful problem-solving
tasks. Problem definition involves accurately describing a prob-
lem by separating facts from assumptions, setting realistic and
attainable goals, and identifying obstacles to these goals. Patients
are encouraged to set both problem-focused goals, which involve
changing the nature of a situation so that it is no longer consid-
ered problematic, and emotion-focused goals, which entail chang-
ing ones cognitive-emotional reactions to situations that cannot
chapter 59 building problem-solving skills 473
be changed. Potential strategies to achieve emotion-focused goals
include acceptance, forgiveness of others, and various stress man-
agement techniques.
The second task in this toolkit, generating alternative solutions,
involves using brainstorming techniques to identify a variety of
potential solution strategies for a given problem. The third task,
decision-making, entails predicting the likely consequences of
each potential strategy, conducting a cost-benefit analysis based
on these likely outcomes, and developing a solution plan based on
this analysis. The final task, solution implementation and verifica-
tion, involves carrying out the solution plan, monitoring and eval-
uating the outcomes, and deciding whether the problem-solving
efforts have been successful or need to continue.
Guided Practice
The above toolkits are generally introduced within the first few
sessions of PST. Subsequent sessions (a substantial majority of the
overall intervention) focus on providing feedback and additional
training in these toolkits, as patients continue to apply the model
to current problems they are experiencing. In addition, patients
are encouraged to forecast future stressful situations (both posi-
tive and negative), in order to anticipate how such tools can be
applied in the future.
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 CHAPTER 60
Meaning-Centered
Psychotherapy
Wendy G.Lichtenthal, Allison J.Applebaum,
and William S.Breitbart
INTRODUCTION
For many patients, a terminal cancer diagnosis brings with it a
sense of fear and despair. As physical limitations mount and impor-
tant roles and activities are challenged, they may develop a sense of
hopelessness and even a desire for hastened death. These individu-
als may not be suffering from a clinical depression,1 but rather are
often confronting an existential crisis of loss of meaning, value,
and purpose because of their advanced disease. Meaning-centered
psychotherapy (MCP) arose from a need to deal with this chal-
lenging clinical problema problem for which no effective inter-
vention was, as yet, available. Inspired primarily by the works of
Viktor Frankl2 and further informed by the contributions of Irvin
Yalom,3 our research group adapted Frankls concepts involving
the importance of meaning in human existence (and his logo-
therapy) and created a brief intervention to enhance meaning and
purpose in advanced cancer patients, even in the face of death.
While MCP relies heavily on Frankls concepts of meaning, it
also incorporates other fundamental existential concepts related
to the search, connection, and creation of meaning. Using didac-
tics and experiential exercises in each session, the therapist and
the patient(s) work together to help patients understand the
importance and relevance of sustaining, reconnecting with, and
creating meaning in their lives through common and reliable
sources of meaning. Furthermore, patients are taught that these
various sources of meaning may serve as resources during espe-
cially difficult times to help diminish despair near the end of life.
Both individual and group formats of MCP have been developed
and tested. Meaning-centered group psychotherapy (MCGP) is an
eight-week intervention with groups of advanced cancer patients.
In our trials of MCGP, we often started with 8 to 10 participants,
though attrition was common because of the advanced disease.4
There has been increasing recognition of the importance of mov-
ing beyond pain and physical symptom control in palliative care;
psychiatric, psychosocial, existential, and spiritual domains are
also critical to comprehensive end-of-life care.5 Acknowledging
the psychological as well as spiritual domains of end-of-life care
has been identified as a priority by both medical professionals and
cancer patients themselves.
DEFINING SPIRITUALITY AND MEANING
Our conceptualization of spirituality in this context is aligned
with the definition offered by the Consensus Conference on
Improving Spiritual Care as a Dimension of Palliative Care, which
described it as the aspect of humanity that refers to the way indi-
viduals seek and express meaning and purpose and the way they
experience their connectedness to the moment, to self, to others,
to nature, and to the significant or sacred.5 Others include both
meaning and religious faith in their definition of spirituality.6
In MCP, we discuss how having a sense that ones life has mean-
ing involves the conviction that one is fulfilling a unique role and
purpose in a life that is a gift.2 This life comes with a responsibil-
ity to live to ones full potential as a human being; in so doing,
one is able to achieve a sense of peace, contentment, or even tran-
scendence, through connectedness with something greater than
ones self.2 Faith is differentiated from meaning as a belief in a
higher transcendent power, not necessarily identified as God, and
not necessarily through participation in the rituals or beliefs of a
specific organized religion.
THE IMPACT OF SPIRITUAL WELL-BEING
ON PSYCHOSOCIAL OUTCOMES IN
ADVANCED CANCER
Research has demonstrated that spirituality generally plays an
important role in patients coping with illnesses such as cancer,
particularly at the end of life.6,7 We have found, for example,
that hopelessness and loss of meaning are predictors of desire
for death, independent of depression, in terminally ill cancer
patients.1 Singer etal.8 found in a qualitative study that achiev-
ing a sense of spiritual peace was among the most important
aspects of end-of-life care to patients. Moadel etal.9 surveyed 248
cancer patients about their most important needs and found that
51% indicated they needed help overcoming fears, 41% needed
help finding hope, 40% needed help finding meaning in life, 43%
needed help finding peace of mind, and 39% needed help finding
spiritual resources. McClain and colleagues10 found that spiritual
well-being was significantly associated with end-of-life despair (as
476 Section X evidence-based interventions
defined by hopelessness, desire for hastened death, and suicidal
ideation), even after controlling for the influence of depression.
In fact, a study by Meier and colleagues11 found that physicians
believed loss of meaning in life accounted for 47% of patient
requests for assisted suicide.
In contrast, those who maintain a sense of meaning report
higher satisfaction with their quality of life and the ability to toler-
ate severe physical symptoms better than patients reporting lower
levels of meaning.6 Our research group has demonstrated a cen-
tral role for spiritual well-being, which includes a sustained sense
of meaning, as a buffering agent that protects against depression,
hopelessness, and desire for hastened death among terminally ill
cancer patients.1,7 Clearly, addressing such spiritual and existen-
tial concerns is critical to quality end-of-life care.
THEORETICAL FRAMEWORK UNDERLYING
MEANING-CENTERED PSYCHOTHERAPY
Frankls Concepts of Meaning
Our findings described above led to an exploration and analysis
of the work of Viktor Frankl 2 and his concepts of logotherapy or
meaning-based psychotherapy, which serve as the core theoreti-
cal conceptual framework of MCP. Frankls main contributions
to human psychology have been to raise awareness of the spiritual
component of human experience, and the central importance of
meaning (or the will to find meaning) as a driving force or instinct
in human psychology. Frankls basic concepts related to meaning
include:
1. Meaning of life: Life has meaning and never ceases to have
meaning, from the very first moment of life, up to the last
moment of life. Meaning may change in this context, but it
never ceases to exist. When we feel our lives have no meaning,
it is because we have become disconnected from meaning in
our lives, not because it no longer exists. Our interpretation of
this concept in MCP is somewhat modified and expressed in
the following way:The possibility of creating or experiencing
meaning exists throughout life, even up to the last moments
oflife.
2. Will to find meaning: The desire to find meaning in human
existence is a primary motivating force in human behavior.
Human beings are creatures who innately search for and create
meaning in their lives (meaning-making creatures).
3. Freedom of will:We have the freedom to find meaning in exis-
tence and to choose our attitude toward suffering. We have
the ability to choose how we respond to limitations, obstacles,
losses, and uncertainty. We have the responsibility to create an
existence of meaning, direction, and identity. We must respond
to the fact of our existence and create the essence of what
makes us human.
4. Sources of meaning:Meaning in life has specific and available
sources (Box 60.1). The four main sources of meaning in life
are derived from creativity (work, deeds, dedication to causes),
experience (art, nature, humor, love, relationships, roles), atti-
tude (the attitude one takes toward suffering and existential
problems), and legacy (meaning exists in a historical context,
thus legacypast, present, and futureis a critical element in
sustaining or enhancing meaning).
Drawing from these principles, MCP helps to enhance patients
sense of meaning by helping them to reflect on, understand, and use
the various sources of meaning in their lives as resources for cop-
ing with challenging times. The resulting enhancement in meaning
in turn is believed to play a role in improving psychosocial out-
comes, such as quality of life, psychological distress, and despair.
Specifically, meaning is viewed as an intermediary outcome, as well
as a mediator of changes in these important psychosocial outcomes.
Meaning-Focused Coping
Park and Folkman12 described conceptual models for meaning in
relation to traumatic events and coping that are relevant to the
theoretical framework of MCP. Their meaning-focused coping
may involve re-evaluating an event as positive; answering the
question of why an event occurred (or Why me?); enumerating
ways in which life changed, sometimes for the positive, because
of an event; and stating the extent to which one has made sense
of or found meaning in an event.13 Park and Folkman12 also
describe two levels of meaning:global meaning and situational
meaning. Unlike Park and Folkmans conceptualization of mean-
ing as global or situational, Frankl viewed meaning as a state;
individuals can move from feeling demoralized and as if their
lives hold no value to recognizing their personal sense of mean-
ing and purpose, which allows them to value even more intensely
the time remaining. Conceptualizing meaning as a state subject to
change suggests its potential responsiveness to intervention.
Frankl also viewed suffering as a potential springboard, both for
having a need for meaning and for finding it. Hence, the diagnosis
of a terminal illness may be seen as a crisis in the fullest sense of
the wordan experience of distress or even despair that may in
itself offer an opportunity for growth and meaning. Either one
has a loss of sense of meaning and purpose in life, or one has a sus-
tained or even heightened sense of meaning, purpose, and peace,
which allows one to value more profoundly the time remaining
and positively appraise events.
Box 60.1 Frankls Sources of Meaning
Creative: Engaging in life through work, deeds, causes, artis-
tic endeavors, hobbies, etc. Examples include our careers/
job, volunteer work, involvement with church/synagogue/
mosque, political and social causes.
Experiential:Connecting with life through love, relationships,
nature, art, humor. Examples include our family, children,
loved ones, the sunset, gardening, beaches, museums, playing
with pets, etc.
Attitudinal:Encountering lifes limitations by turning personal
tragedy into triumph, things we have achieved despite adver-
sity, rising above or transcending difficult circumstances.
Examples include achieving an education despite personal/
financial challenges, overcoming grief/loss, persevering
through cancer treatment, etc.
Historical:Legacy given (past), lived (present), and left (future).
Examples include our story, our family history, the history of
our name, our accomplishments, and whatever we hope to
leave behind.
 chapter 60 meaning-centered psychotherapy 477

Other Central Existential Philosophy Psycho-education Through Didactics

andPsychologyConcepts
Although the emphasis of MCP is on meaning and sources of
meaning, clearly much of the psychotherapeutic work is richer
when the therapists are well grounded in the basic conceptual
framework and theories of existential philosophy and psycho-
therapy.2,3,14 Important existential concepts that are utilized and
incorporated into the theoretical framework of MCP include
freedom, responsibility, choice, creativity, identity, authenticity,
engagement, existential guilt, care, transcendence, transforma-
tion, direction, being unto death, being and temporality, and exis-
tential isolation.2,3
MCP THEMES AND FORMATS
MCP is a brief (7 weeks for IMCP, 8 weeks for MCGP) intervention
that uses a mix of didactics, discussions, and experiential exer-
cises that focus on finding and sustaining a sense of meaning in
the context of advanced cancer (Table 60.1; for the comprehen-
sive text on MCP, see Breitbart and Poppito15). Patients are taught
how to use those aspects of their lives that they identify as most
meaningful as coping resources. Discussions between therapists
and patients reinforce the importance of reconnecting to sources
of meaning when a patient feels disconnected because of his or her
disease and related concerns. Existential concepts, such as free-
dom, responsibility, authenticity, existential guilt, transcendence,
and choice are also highlighted as they present throughout the
sessions. Therapists support the expression of emotion and vali-
date the patients suffering as it arises, though the focus is primar-
ily on sources of meaning. Table 60.1 provides a brief overview of
each MCP session.
and Experiential Exercises
MCP is in many ways an educational intervention, teaching
patients about concepts of meaning and their application as one
faces a terminal illness. Each session is composed of a brief set of
introductory didactics followed by an experiential exercise that is
designed to facilitate learning of these abstract concepts through
the patients own emotional experiences. The various sources of
meaning reviewed can then ultimately become resources for the
patient coping with advanced cancer. The patients ability to shift
from one source of meaning to another is highlighted, as selected
sources of meaning become unavailable due to disease progres-
sion. Therapists support moving from ways of doing to ways of being
to assist patients with recognizing that meaning can be derived in
more passive ways. Therapists also call attention to meaning shifts
when patients begin to incorporate the vocabulary and conceptual
framework of meaning into the material they share.
There is a logical progression of content, as the sessions unfold,
that focuses on the various sources of meaning. Therefore, it is
ideal for patients to attend all sessions in order to theoretically
obtain the optimal response. If all of the material designated for a
specific session is completed, discussion and exercises can be car-
ried over to the subsequent session.
Incorporating Basic Existential Concepts and Themes
Human beings are creators, creating values and, most important,
lives. Living a full life for many involves creating a sense of mean-
ing, identity, and direction. Therapists should incorporate addi-
tional existential concepts in responding to the patients response
to the experiential exercise. For example, existential concepts such
as responsibility, transformation, authenticity, and existential

Table60.1 Meaning-Centered Psychotherapy Weekly Topics

Session Session Title Content

1 Concepts and Sources of Meaning
2 Cancer and Meaning
3 Historical Sources of Meaning
(Past Legacy)
Introductions; review of concepts and sources of meaning; Meaningful Moments experiential exercise;
homework is to read Mans Search for Meaning
Discussion of sense of identity before and after cancer diagnosis; Who am I? experiential exercise;
homework is to reflect on Session 3 experiential exercise
Discussion of life as a legacy that has been given (past); Historical Sources of Meaning-Past experiential
exercise; homework is to reflect on Session 4 experiential exercise

4 Historical Sources of Meaning (Present and
Future Legacy)
5 Attitudinal Sources of Meaning:
Encountering Lifes Limitations
6 Creative Sources of Meaning:
Engaging in Life Fully
Discussion of life as a legacy that one lives (present) and gives (future); Historical Sources of
Meaning-Present and Future experiential exercise; homework is to share ones story with someone and
to reflect on Session 5 experiential exercise
Discussion of confronting limitations imposed by cancer, prognosis, and death; Encountering Lifes
Limitations experiential exercise; introduction to Legacy Project; homework is to reflect on Session 6
experiential exercise
Discussion of creativity, courage, and responsibility; Creative Sources of Meaning experiential exercise;
homework is to reflect on Session 7 experiential exercise

7 Experiential Sources of Meaning: Discussion of experiences as sources of meaning, such as love, nature, art, and humor; Love, Beauty, &
Connecting with Life Humor experiential exercise; homework is to complete Legacy Project for presentation in Session 8

8 Transitions:Reflections, and Hopes for the Review of sources of meaning, as resources, reflections on lessons learned; Hopes for the Future
Future experiential exercise; goodbyes

* In individual meaning-centered psychotherapy, which consists of 7 sessions, Sessions 3 and 4 are combined into a single session on Historical Sources of Meaning.
478 Section X evidence-based interventions
guilt often emerge as patients respond to the question prompts in
the session on creative sources of meaning. It is important that
therapists do their best to detoxify death by speaking openly about
death as the ultimate limitation that causes suffering and for
which meaning can be derived through the attitude that one takes
toward suffering (e.g., transcendence, choice). Therapists may also
employ an existential nudge to gently challenge the resistance of
patients to explore difficult existential realities, such as the ulti-
mate limitation of death or existential guilt.
Administration of Meaning-Centered
GroupPsychotherapy
In meaning-centered group psychotherapy (MCGP), patients
each share the content of their experiential exercises, and the
process of experiential learning is reinforced through the com-
ments of co-facilitators and patients, as well as through the
identification of commonalities among patients responses. It is
important for co-facilitators to be aware of the co-creation of
meaning between co-facilitators and patients, and also between
group members. Co-facilitators and patient participants are
witnesses or repositories of meaning for each other, and thus
are part of a meaningful legacy created by each of the patient
participants in MCGP.
In facilitating MCGP groups, attention to the basic tenets of
group processes, dynamics, and etiquette remains important.
Co-facilitators should try to promote group cohesion and a safe
and open atmosphere. While MCGP is not intended to be primar-
ily a supportive group intervention, co-facilitators inevitably will
provide support as patients share and express emotion.
Administration of Individual
Meaning-CenteredPsychotherapy
One of the main challenges in applying MCGP in an advanced
cancer population is that participants cannot always commit to
and regularly attend a weekly session at a specified day and time.
As a one-on-one intervention, IMCP addresses this issue by afford-
ing more flexibility in the delivery of the meaning-centered work.
The therapist can delve deeper into the patients past and personal
goals. Because there is more time and space in the session, it is eas-
ier to get off track, and so therapists should be mindful of stay-
ing on track with the session themes and experiential exercises.
RESEARCH DEMONSTRATING
THEEFFICACY OF MCP
Prior to the development of MCP, research on interventions focus-
ing on existential or spiritual issues, particularly in patients with
advanced cancer, was limited. Early research by Spiegel, Bloom,
and Yalom16 demonstrated that a one-year supportive group psy-
chotherapy that included a focus on existential issues decreased
psychological distress and maladaptive coping responses. More
recent studies have described short-term interventions that
included a spiritual or existential component for early stage breast
cancer patients or survivors,17,18 and some individually based
approaches for advanced cancer patients that have not yet dem-
onstrated efficacy in enhancing meaning in larger scale trials.19,20
MCP has demonstrated efficacy in enhancing meaning in larger
scale trials, focusing on advanced cancer patients with stage IV
solid tumor cancers, or stage III solid tumor cancers (excluding
breast and prostate cancer). We have also targeted patients with
elevated distress as indicated by a score of 4 or higher on the
Distress Thermometer from the National Comprehensive Cancer
Network (NCCN) Clinical Practice Guidelines in Oncology 21
particularly if issues involve emotional problems and spiritual/
religious concerns. Patients with physical limitations sufficient to
preclude participation in outpatient psychotherapy are not suited
for this intervention.
A pilot randomized controlled trial of MCGP demonstrated the
efficacy of this intervention in improving spiritual well-being and
a sense of meaning, as well as in decreasing anxiety, hopelessness,
and desire for death in 90 advanced cancer patients.22 Patients
received either eight sessions of MCGP or a standardized support-
ive group psychotherapy (SGP), with 55 patients in total complet-
ing the eight-week intervention. Thirty-eight patients completed a
follow-up assessment two months later, with attrition in large part
due to patient death or physical deterioration. Results of this study
demonstrated significantly greater benefits from MCGP as com-
pared to SGP, particularly in enhancing spiritual well-being and
a sense of meaning. Furthermore, the improvements in patients
who received MCGP appeared even stronger at the two-month
follow-up assessment. Patients who participated in SGP failed to
demonstrate any such improvements, either post-treatment or at
follow-up. In a larger randomized controlled trial of MCGP versus
SGP in 253 patients with advanced cancer, results similarly dem-
onstrated significantly greater benefits from MCGP as compared
to SGP in improvement in depression, hopelessness, desire for
hastened death, spiritual well-being, and quality of life.23
A pilot randomized controlled trial of individual
meaning-centered psychotherapy (IMCP) comparing seven
sessions of IMCP or therapeutic massage (TM) demonstrated
significantly greater improvement in spiritual well-being, symp-
tom burden, and symptom-related distress among participants
who received IMCP. Importantly, attrition from this study was
lower than that reported in the pilot randomized controlled trial
of MCGP (43%); of the 120 patients with advanced cancer ran-
domly assigned to receive either IMCP or TM, 65% completed the
two-month follow-up assessment.
Overall, these studies provide strong support for the efficacy of
meaning-centered psychotherapy as a treatment for psychological
and existential/spiritual distress among patients with advanced
cancer. Both the group and individual formats of MCP are prom-
ising, novel interventions for the enhancement of quality of life for
patients with advanced cancer at the end of life.
FUTURE DIRECTIONS
In light of the efficacy of MCP demonstrated in randomized con-
trolled trials, future research will involve dissemination of the
intervention and the training of psycho-oncologists through inten-
sive workshops. Replication studies of MCP are being conducted
internationally. In addition, several adaptations of MCP have been
developed, including MCP for cancer survivors, for caregivers, for
bereaved parents, and for oncology care providers.24 Additionally,
we are developing a briefer form of IMCP that can be applied with
patients in hospice, and we are developing cultural and linguis-
tic adaptations of MCP for Mandarin-speaking Chinese cancer
patients, and for Spanish-speaking Hispanic cancer patients.
 chapter 60 meaning-centered psychotherapy 479

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 CHAPTER61
Dignity in the Terminally Ill
Empirical Findings and
Clinical Applications
Harvey Max Chochinov and Maia S.Kredentser
INTRODUCTION
Maintaining the dignity of patients and their family members is
often identified as the clinical, philosophical, and moral founda-
tion of palliative care. Dignity is defined as the quality or state
of being worthy, honored, or esteemed.1 For patients living with
life-threatening or life-limiting illness, a sense of dignity may be
intimately connected to the feeling that they are respected, despite
the physical deterioration of their bodies and the psychological
distress that their illnesses may bring. Dignity includes notions
of being able to maintain feelings of physical comfort, autonomy,
meaning, spiritual peace, interpersonal connectedness, belong-
ing, and hope.24 Afractured sense of dignity, by contrast, is asso-
ciated with feelings of degradation, shame, and embarrassment,
and is linked to depression, hopelessness, and desire for death.57
Dignity is influenced by the quality of our social interactions, and
can be nurtured and supported by personal relationships that
have been empowering throughout life.8
In a palliative care setting, healthcare provider knowledge, skill,
and attitude are key to helping patients deal with existential issues,
maintain a sense of dignity, and lessen psychological distress. In
this sense, dignity may be a function of the attitudes and behav-
iors communicated by others.9 Negative attitudes, such as anger
or blame, can undermine empathy as well as the helping behaviors
of caregiving families toward their dying loved one.10 Expressions
of empathy, the imaginative ability of being able to step inside
another persons shoes to understand and validate their emotional
pain, can mitigate suffering and can enhance the quality of life
and sense of dignity for patients nearing death.
Loss of dignity is indeed a central concern of patients requesting
assisted suicide or euthanasia. In a study examining end-of-life
decisions among patients with amyotrophic lateral sclerosis (ALS)
in the Netherlands, Maessen and colleagues found significant dif-
ferences between those who chose euthanasia or physician-assisted
suicide (EAS), continuous deep sedation (CDS), or neither of
those options. When informal caregivers were asked why the
patient hastened his or her death, they reported the reasons as
no chance of improvement, loss of dignity, being dependent, individualized psychotherapy, designed specifically for patients
and fatigue. These experiences were all significantly higher in
patients choosing EAS compared to those who chose CDS or nei-
ther.11 When asked why their patients had selected EAS, the most
common reason cited by 57% of Dutch physicians was loss of dig-
nity.12 In Washington State, physicians reported that 72% of their
patients requesting hastened death were concerned about loss of
dignity.13
Notably absent from much of the research surrounding concepts
of dignity, suffering, and end-of-life choices are the voices of dying
patients themselves.6 Karlsson and colleagues interviewed 66
dying cancer patients, inquiring about the nature of suffering with
respect to euthanasia, a good death, and dignity. In this qualita-
tive study, the general attitude of study participants toward eutha-
nasia varied. Twenty-nine percent of the sample were in favor of
euthanasia, 20% opposed euthanasia, and the majority (51%) were
undecided on the issue. Patients who feared intolerable suffering
and were inclined to euthanasia discussed the complex nature
of suffering, including meaninglessness, whereas those who felt
euthanasia was unwanted or unnecessary felt that suffering could
be overcome in various ways, often linking to their own experi-
ences of ameliorated pain or supportive contact with healthcare
professionals.14 Our research group has sought to understand the
concept of dignity from the perspective of patients themselves. As
this body of research has grown, we have also explored the impact
of dignity in care on family members and healthcare providers
alike. Like other research groups, we have begun to extend this
research beyond cancer and palliative care populations.
DIGNITY RESEARCH
Over the past decade, our research group has conducted pro-
grammatic research, addressing the multilayered and highly tex-
tured construct of dignity and end-of-life care. This body of work
includes an inductively derived, empirical model of dignity in
the terminally ill,15 development of the validated Patient Dignity
Inventory (PDI) tool informed by our model, which provides a
novel way of tracking dignity-related distress,16 and an innova-
tive intervention coined dignity therapy. Dignity therapy is a brief,
nearing end of life.1719

THE DIGNITY MODEL
Our team has been engaged in a program of research seeking
to better understand factors that enhance and erode dignity for
terminally ill patients. Semi-structured interviews were used
to explore how patients with cancer perceived dignity. Using
latent content analysis and constant comparative techniques,
three major categories were identified as having a bearing on
dignity-related issues, resulting in an empirical model of dignity
in the terminally ill15 (Figure 61.1). This model delineates vari-
ous issues and concerns that can influence sense of dignity for
patients nearing death. It provides an overarching framework
that can guide healthcare providers, patients, and families in
defining the goals and therapeutic considerations fundamental
to end-of-lifecare.
Illness-relatedconcerns that influence dignity derive, or are
related to, the illness itself. These illness-mediated issues and
their attendant themes and subthemes threaten or actually
impinge a persons sense of dignity. For example, illness-related
distress includes level of independence (the degree of reli-
ance that an individual has on others, influenced by cogni-
tive acuity and functional capacity) and symptom distress
(the experience of discomfort or anguish related to the disease
progression).
Dignity-conserving repertoire includes a persons dignity-
conserving perspectives, that is, a way of looking at ones
situation that helps to promote dignity, and contains the sub-
themes of continuity of self, role preservation, generativity/
legacy, maintenance of pride, hopefulness, autonomy/control,
acceptance, and resilience/fighting spirit. Another facet of the
dignity-conserving repertoire is dignity-conserving practices,
that is, personal actions that can bolster or reinforce a patients
sense of dignity. These practices include living in the moment,
maintaining normalcy, and seeking spiritual comfort.
MAJOR DIGNITY CATEGORIES, THEMES AND SUB-THEMES
Illness Related Concerns Dignity Conserving Repertoire
Level of Independence
Cognitive Acuity
Functional Capacity
Symptom Distress
Physical Distress
Phychologocal Distress
medical uncertainty
death anxiety
Figure61.1 Model of Dignity in the Terminally Ill. Summary of major categories, themes, and subthemes arising from qualitative work examining the construct
of dignity from the perspective of the terminally ill. Reprinted with permission from Chochinov HM, Hack T, McClement S, Kristjanson L, Harlos M.Dignity in the
terminally ill:a developing empirical model. Soc Sci Med. 2002;54:433443.
Chapter61 dignity in the terminally ill 481
Social dignity inventory speaks to social concerns or relation-
ship dynamics that enhance or detract from a patients sense of
dignity. Themes within this category include privacy boundar-
ies, social support, burden to others, aftermath concerns, and
care tenor. Care tenor refers to the attitude that others dem-
onstrate when interacting with the patient and is particularly
important for patients who are most vulnerable in the face of
a rapidly deteriorating illness trajectory. For these patients, the
undermining of dignity and resultant suffering are highly influ-
enced by the texture or tone of their care. Healthcare provider
sensitivity to the influence their attitudes have on the tone of
care they provide is critical in being able to deliver empathic,
dignity-conserving care.
The integration of these three categories forms the Model of
Dignity in the Terminally Ill (Table 61.1). Patients who experi-
ence difficulties with aspects of the social dignity inventory and/
or illness-related concerns may experience an eroded sense of dig-
nity. Yet, this can be moderated by their dignity-conserving rep-
ertoire. By invoking or utilizing resources contained within the
dignity-conserving repertoire (i.e., feeling hopeful, maintaining
normalcy, spiritual care), patients may be able to buffer dignity-
associated challenges. The strength or integrity of those resources
will determine the degree to which these assaults will erode or
undermine individual sense of dignity. In this sense, the model is
dynamic in that it incorporates aspects of dignity that are inter-
nal and external to the individual, and provides a framework for
healthcare providers to mitigate dignity-related distress.15
The ABCDs of Dignity Conserving Care9 was designed as a
knowledge translation tool, summarizing key aspects of medi-
cal professionalism and acknowledging the importance of kind-
ness, respect, and whole-person care:A stands for attitude, B for
behavior, C for compassion, and D for dialogue. Dignity is pro-
foundly influenced by the tone and texture of communication
between the care provider and the patientwith acknowledgment
Social Dignity Inventory
Dignity Conserving Privacy Boundaries
Perspectives
continuity of self Social Support
role preservation
generativity/legacy
Care Tenor
maintenance of pride
hopefulness
autonomy/control Burden to Others
acceptance
resilience/fighting spirit
Aftermath Concerns
Dignity Conserving
Practices
living in the moment
maintaining normalcy
seeking spiritual comfort
482 Section X evidence-based interventions
Table 61.1 Model of Dignity in the Terminally Ill
Illness-Related Concerns Dignity-Conserving Repertoire
Symptom distress Dignity-conserving perspectives
Physical distress Continuity of self
Psychological distress Role preservation
Medical uncertainty Generativity/legacy
Death anxiety Maintenance of pride
Hopefulness
Autonomy/control
Acceptance
Resilience/fighting spirit
Level of independence Dignity-conserving practices
Cognitive acuity Living in the moment
Functional capacity Maintaining normalcy
Seeking spiritual comfort
of the patient as a whole person being paramount. This acronym
is rooted in the idea that how patients view themselves is reflected
in how they perceive they are seen by those providing care.20 This
framework serves as a reminder to practitioners that their atti-
tude, behavior, compassion, and dialogue will markedly influence
patient experience of dignity in care.9
The needs and interests of patients are the sole focus in the
patient-caregiver relationships. The ability to show compassion
and empathy is a central component in being able to address
patient needs.21 Caregivers who lack compassion and empathy
have decreased self-awareness, and are more likely to be inconsid-
erate, thoughtless, and detached,22 and treat patients in a deper-
sonalized way. The personal characteristics that are associated with
effective, engaged caring represent the inner resources of caregiv-
ers, and include self-efficacy, self-esteem, and self-confidence.
These characteristics are thought to influence the core attitudes of
caring, and the caregivers ability to be attentive, present, mind-
ful, and caring with patients.23
Our research confirms that attitude, as well as how patients
perceive themselves to be seen by others, 24 is of profound impor-
tance. This issue of perceived appearance, or dignity in the eye
of the beholder, accounted for most of the variance in subjective
ratings of dignity among a large cohort of patients nearing death
(N=213).5 Far from being obtuse, this notion of how patients per-
ceive themselves to be seen has profound and practical implica-
tions. If the experience of patient dignity is determined by how
patients perceive their healthcare providers to appreciate the
essence of who they are, and not simply what disease they have,
each clinical encounter provides an opportunity for patient affir-
mation. Affirmation takes many forms and may be delivered by
way of words (dialogue), actions (behaviors), or simply tone (care
tenor [attitude and compassion]). These facets of care tenor convey
the acknowledgment of personhood and represent an important
element of dignity-conserving care.25 Our research suggests that
healthcare provider behaviors anchored in respect and under-
standing offer some protection against patients sensing them-
selves to be a burden to others, or feeling that life is no longer
worth living.26
Social Dignity Inventory
Social issues/relationship dynamics affecting dignity
Privacy boundaries
Social support
Burden to others
Aftermath concerns
THE PATIENT DIGNITY INVENTORY
In an effort to better assess patients distress at the end-of-life,
Chochinov and colleagues created the Patient Dignity Inventory
(PDI). Developed using the themes and subthemes of the Model of
Dignity in the Terminally Ill, the PDI is a 25-item self-report mea-
sure (Table 61.2) that can be implemented to better understand
the spectrum of patient dignity-related distress. The psychometric
properties of the PDI have been examined, demonstrating robust
internal consistency and test-retest reliability. Factor analysis
revealed five factors, including: symptom distress, existential dis-
tress, dependency, peace of mind, and social support. Concurrent
validity was established with each factor showing significant cor-
relations with other common measures of distress.16
This measure provides one way that dignity-related distress
can be identified, measured, and possibly tracked in a range of
care settings. Administration of the PDI to 253 patients receiving
palliative care found that patients identified nearly six problems
each. The most highly endorsed items included a combination of
distressing physical symptoms, functional limitations (not able
to continue usual routines; not able to perform tasks of daily liv-
ing; not able to carry out important roles), and existential con-
cerns (no longer feeling like who Iwas).27 These findings speak
to the importance of conducting patient assessments that encom-
pass more than physical symptom distress, and identifying and
tracking complex and diverse sources of distress in the patients
who are terminally ill. The PDI may help clinicians identify and
track the complex and diverse nature of distress in the terminally
ill, hence paving the way toward effective, dignity-conserving
end-of-life care.
A recent study of the PDI examined how psychosocial oncology
professionals (N=90) utilized it as a tool within their practice.
Clinicians indicated they used it in a variety of ways, including
(1)as a screening tool; (2)as a means of eliciting issues that might
be problematic; (3)reinforcing client-related strengths (by reflect-
ing on those issues that were not, or were no longer, problematic);
(4) using the results as a means of tracking sources of distress
over time; (5) helping their patients label or name their source
 Chapter61 dignity in the terminally ill 483

Table 61.2 The Patient Dignity Inventory

For Each Item, Please Indicate How Much of a Problem or Not a Problem A Slight A Problem A Major An Overwhelming
Concern These Have Been for you Within the Last Few Days. Problem Problem Problem
1. Not being able to carry out tasks associated with daily living 1 2 3 4 5
(e.g., washing myself, getting dressed).
2. Not being able to attend to my bodily functions 1 2 3 4 5
independently (e.g., needing assistance with toileting-related
activities).
3. Experiencing physically distressing symptoms (such as pain, 1 2 3 4 5
shortness of breath, nausea).
4. Feeling that how Ilook to others has changed significantly. 1 2 3 4 5
5. Feeling depressed. 1 2 3 4 5
6. Feeling anxious. 1 2 3 4 5
7. Feeling uncertain about my health and healthcare. 1 2 3 4 5
8. Worrying about my future. 1 2 3 4 5
9. Not being able to think clearly. 1 2 3 4 5
10. Not being able to continue with my usual routines. 1 2 3 4 5
11. Feeling like Iam no longer who Iwas. 1 2 3 4 5
12. Not feeling worthwhile or valued. 1 2 3 4 5
13. Not being able to carry out important roles (e.g., spouse, 1 2 3 4 5
parent).
14. Feeling that life no longer has meaning or purpose. 1 2 3 4 5
15. Feeling that Ihave not made a meaningful and/or lasting 1 2 3 4 5
contribution in my life.
16. Feeling that Ihave unfinished business (e.g., things that 1 2 3 4 5
Ihave yet to say or do, or that feel incomplete).
17. Concern that my spiritual life is not meaningful. 1 2 3 4 5
18. Feeling that Iam a burden to others. 1 2 3 4 5
19. Feeling that Idont have control over my life. 1 2 3 4 5
20. Feeling that my health and care needs have reduced my 1 2 3 4 5
privacy.
21. Not feeling supported by my community of friends and 1 2 3 4 5
family.
22. Not feeling supported by my healthcare providers. 1 2 3 4 5
23. Feeling like Iam no longer able to mentally cope with 1 2 3 4 5
challenges to my health.
24. Not being able to accept the way things are. 1 2 3 4 5
25. Not being treated with respect or understanding by others. 1 2 3 4 5

Adapted from Chochinov HM, Hassard T, McClement S, etal. The Patient Dignity Inventory:a novel way of measuring dignity-related distress in palliative care. J Pain Symptom Manag.
2008;36:559571.

of distress; (6)helping distracted patients with diffuse concerns
to hone in on specific issues; (7) facilitating communication in
patients who had functional deficits caused by their disease (i.e.,
there were instances when patients unable to speak could point to
items that were causing them distress; (8)promoting insight (i.e.,
seeing the item would help them realize that this described the
essence of their distress); (9)facilitating communication between
patients and their families; and (10) using it in group therapy
sessions, as a means of helping participants identify their sources
of distress.28
Clinicians were more inclined to apply the PDI to patients
engaged in active treatment or palliation, rather than those in
remission, those who had recently relapsed, or those who were
newly diagnosed. Besides its utility in identifying distress, the PDI
enabled clinicians to provide more targeted therapeutic responses
to areas of patient concern. In nearly 80% of instances, the PDI
484 Section X evidence-based interventions
uncovered one or more areas of distress previously unknown to
the clinician, and over 80% of the time clinicians reported that
the PDI facilitated their work. The PDI thus seems to enable more
efficient and targeted psychosocial care among clients experienc-
ing distress in the context of cancer.28
DIGNITY THERAPY
Based on our studies of dignity and end-of-life care, our research
group has developed a therapeutic means of ameliorating dis-
tress and enhancing dignity for patients nearing death. This brief
individualized psychotherapeutic intervention, coined dignity
therapy, allows patients to share details that capture their essence
and to say things that they wish to say.17,19,26 It engages patients
in a therapist-facilitated conversation (Box 61.1) designed to
cover issues that invoke a sense of meaning and purpose, provide
patients with a sense of affirmation and continued sense of worth,
and fulfill generativity needs. Generativity, a stage of psychoso-
cial development,29 refers to an individuals ability to reflect back
on life with a sense of having made a difference, and being able
to invest psychological energy into those who will outlive them.
Following a skillfully guided semi-structured interview with a
patient, a typed transcript is edited to provide the patient and his
or her loved ones with a generativity document that recounts
details of their lives, heartfelt thoughts, concerns, world outlook,
passions, and wishes.
Box 61.1 Dignity Therapy Question Protocol
Tell me a little about your life history, particularly the parts
that you either remember most, or think are the most impor-
tant. When did you feel most alive?
Are there specific things that you would want your family
to know about you, and are there particular things you would
want them to remember?
What are the most important roles you have played in life
(family roles, vocational roles, community service roles, etc.)?
Why were they so important to you, and what do you think you
accomplished in those roles?
What are your most important accomplishments, and what
do you feel most proud of?
Are there particular things that you feel still need to be said
to your loved ones, or things that you would want to take the
time to say once again?
What are your hopes and dreams for your loved ones?
What have you learned about life that you would want to
pass along to others? What advice or words of guidance would
you wish to pass along to your (son, daughter, husband, wife,
parents, others)?
Are there words or perhaps even instructions you would like
to offer your family to help prepare them for the future?
In creating this permanent record, are there other things
that you would like included?
Adapted from Chochinov HM, Hack T, Hassard T, Kristjanson LJ,
McClement S, Harlos M.Dignity therapy:a novel psychotherapeutic
intervention for patients near the end of life. J Clin Oncol.
2005;23:55205525.
Patients benefit from dignity therapy because it allows them
to bolster their sense of meaning, purpose, and worth within a
framework that is supportive, nurturing, and accessible. The
resultant document offers dying patients a sense that the essence
of who they are will be preserved beyond their death, and pro-
vides a source of comfort for those they are about to leave behind.
In a randomized-control trial, dignity therapy outperformed
client-centered care and standard care on all 23 post-study survey
items. It significantly outperformed the other study conditions on
having found the study helpful (p < 0.000), improving quality of
life (p < 0.001), and sense of dignity (p < 0.002). It also significantly
outperformed the other study arms on changing how family sees
and appreciates them (p < 0.000) and indicated that the docu-
ment was helpful to their family (p < 0.000). Thus, dignity therapy
has been shown to be an effective way of assuaging end-of-life
distress.17,19
Our studies,1719,30,31 together with others taking place in vari-
ous centers worldwide,3234 have helped establish dignity therapy
as a viable way of enhancing end-of-life experience for patients
nearing death and has brought comfort to family members in
their time of grief and bereavement. Family members whose
loved ones participated in dignity therapy have been studied to
determine their perceptions of dignity therapys impact on their
deceased loved one, along with its influence on their bereave-
ment experience. In a study of one hundred patients who com-
pleted dignity therapy, 60 family members provided feedback on
the experience approximately one year after the patients death.
Ninety-five percent of family members whose loved ones received
dignity therapy reported that it had helped the patient, and just
over three-quarters indicated that the generativity document
helped them during their grief and would be a source of comfort
to them in the future.19
Dignity therapy has been successfully delivered in various
countries and languages, with minor adaptations for cultural dif-
ferences (e.g., the notion of pride did not resonate with Danish
participants).34 It has also been implemented with geographically
isolated patients using telemedicine. 35 In contrast to the floor
effects of distress found in Chochinov etal.s (2011) study, Julio
and colleagues conducted a randomized controlled trial of dignity
therapy with a Portuguese population experiencing high base-
line levels of distress. Recruited from an inpatient palliative care
unit, 29 patients received dignity therapy plus standard palliative
care, while 31 control group patients received standard palliative
care alone. Depression and anxiety, as measured by the Hospital
Anxiety and Depression Scale (HADSPortuguese version), 36
were assessed at baseline (T1), day four (T2), day 15 (T3), and day
30 (T4). At baseline, compared to participants in the Chochinov
etal. (2011) study, these participants had higher HADS-depression
scores (12.9 versus 5.86) and HADS-anxiety scores (8.83 versus
5.22). For those in the dignity therapy condition, the intervention
was conducted between baseline and T2.
Within the dignity therapy group, participants showed signifi-
cant reductions from baseline in depression at T2 and T3, which
plateaued by day T4, and significant reductions in anxiety at all
three follow-ups. Within the standard palliative care group,
depression ratings increased significantly between baseline and
all three follow-up assessments, while no significant changes in
anxiety were found. Compared to the standard palliative care
group, patients in the dignity therapy group had significantly

lower depression ratings at T2 and T3, and significantly lower
anxiety ratings at T2, T3, and T4.37
The application of dignity therapy in community settings has
also been explored, providing insights into the practical and logis-
tical issues of offering this intervention. Montross and colleagues32
delivered dignity therapy to patients in a community-based hos-
pice, with a psychologist trained in the protocol providing informa-
tion about the service to members of the hospice team at meetings
and rounds. This resulted in just over 100 referrals for dignity ther-
apy, with 27 patients completing the full dignity therapy protocol
(reasons for non-completion included cognitive/physical impair-
ments impeding speech or comprehension, death before comple-
tion, patient declining participation, patients lost to follow-up).
In terms of the logistics of providing the service, nearly
three-quarters of referrals were from social workers. The average
cost of a patients transcript was US$55.94; transcripts were an
average of 2993 words in length, with the therapist spending an
average of 6.3 hours per patient in order to complete the dignity
therapy document. Qualitative analysis of the themes of patients
documents revealed similarities to previous studies, 30 including
discussions of family, pride in their children/accomplishments,
pleasure, and life experiences.32
Dignity therapy has also been applied to participants who
are not imminently dying. Avery and Baez recently published a
case report in which a 61-year-old woman hospitalized for major
depressive disorder participated in dignity therapy. She reported
that dignity therapy helped her feel more hopeful and improved
her mood. This suggests that dignity therapy may facilitate feel-
ings of increased purpose, meaning, and hopefulness in people
with depression, and may also help their families.38
A pilot study of dignity therapy in the frail elderly recruited
10 competent residents and 10 residents whose family members
completed dignity therapy on behalf of their cognitively impaired
loved one. Nearly every healthcare provider participant indicated
that reading the patients dignity therapy transcript enhanced
their ability to appreciate who the person was, clarified goals of
care, and deepened their sense of connectedness with the patient.
Even when families competed dignity therapy by proxy, care
providers almost uniformly said that the information contained
therein changed their outlook, gave them an appreciation for
the patient as a person, and saw them become more mindful of
dignity-conserving approaches.39
In a study of dignity therapy for older people in care homes, Hall
and colleagues demonstrated that compared to those in a control
group, residents who received dignity therapy reported signifi-
cantly higher meaning in life at two-week follow-up, and signifi-
cantly more endorsement that it would be helpful for their families
at two- and eight-week follow-up.40 Additionally, Bentley and col-
leagues recently demonstrated the benefits of dignity therapy with
motor neurone disease (MND), a population in which hopefulness
and meaning for both patients and caregivers have been shown to
enhance quality of life. They demonstrated that the intervention
was feasible for individuals with MND, and found that although
dignity therapy did not alleviate caregiver burden, it did reduce
anxiety and depression in caregivers of patients with MND.41 It
thus appears that dignity therapy may have applications across a
range of settings and a variety of patient and caregiver populations.
Moreover, the research on dignity therapy underscores the notion
that knowing the patient as a person can improve care.
Chapter61 dignity in the terminally ill 485
CONCLUSION
Palliative care has been characterized as care that honours and
protects those who are dying, and conveys by word and action that
dignity resides in people (p.1).42 The empirical insights regard-
ing dignity should inform healthcare provider outlook and care
tenor, provide a means of identifying and tracking dignity-related
distress, and inform dignity-enhancing strategies, such as dignity
therapy, thus enhancing the end-of-life experience for patients
and families alike.
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aspects of dying. J Palliat Med. 2005;8(Suppl 1):S10315.
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and other medical decisions concerning the end of life. Lancet.
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13. Back AL, Wallace JI, Starks HE, Pearlman RA. Physician-assisted
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14. Karlsson M, Milberg A, Strang P. Suffering and euthanasia:a quali-
tative study of dying cancer patients perspectives. Support Care
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15. Chochinov HM, Hack T, McClement S, Kristjanson L, Harlos M.
Dignity in the terminally ill:a developing empirical model. Soc Sci
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16. Chochinov HM, Hassard T, McClement S, etal. The Patient Dignity
Inventory:a novel way of measuring dignity-related distress in pallia-
tive care. J Pain Symptom Manag. 2008;36:559571.
17. Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement S,
Harlos M. Dignity therapy:a novel psychotherapeutic intervention
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18. Chochinov HM, Kristjanson LJ, Breitbart W, etal. Effect of
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19. McClement S, Chochinov HM, Hack T, Hassard T, Kristjanson LJ,
Harlos M. Dignity therapy:family member perspectives. J Palliat
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20. Chochinov HM. Dignity conserving care:a new model for palliative
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21. Meier DE, Back AL, Morrison RS. The inner life of physicians and
care of the seriously ill. JAMA. 2001;286:30073014.
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24. Chochinov HM. Dignity and the eye of the beholder. J Clin Oncol.
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25. McClement S, Chochinov HM, Hack T, Kristjanson LJ, Harlos M.
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26. Chochinov HM, Krisjanson LJ, Hack TF, Hassard T, McClement
S, Harlos M. Dignity in the terminally ill:revisited. J Palliat Med.
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27. Chochinov HM, Hassard T, McClement S, etal. The landscape
of distress in the terminally ill. J Pain Symptom Manag.
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28. Chochinov HM, McClement SE, Hack T, etal. The Patient Dignity
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29. Erickson E. Childhood and Society. NewYork:Norton; 1950.
30. Hack TF, McClement SE, Chochinov HM, etal. Learning from dying
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31. Chochinov HM, Hack T, Hassard T, Kristjanson LJ, McClement SE,
Harlos M. Dignity and psychotherapeutic considerations in end-of-
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32. Montross L, Kathryn D.Winters, Irwin SA. Dignity therapy imple-
mentation in a community-based hospice setting. J Palliat Med.
2011;14:729734.
33. Hall S, Chochinov H, Harding R, Murray S, Richardson A,
Higginson I. A Phase II randomised controlled trial assessing the
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for older people in care homes:study protocol. BMC Geriatrics.
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34. Houmann LJ, Rydahl-Hansen S, Chochinov HM, Kristjanson
LJ, Groenvold M. Testing the feasibility of the dignity therapy
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35. Passik SD, Kirsh KL, Leibee S, etal. A feasibility study of dignity
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36. Pais-ribeiro J, Silva I, Ferreira T, Martins A, Meneses R, Baltar M.
Validation study of a Portuguese version of the Hospital Anxiety and
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37. Julio M, Barbosa A, Oliviera F, Nunes B, Vaz Carneiro A. Efficacy
of dignity therapy for depression and anxiety in terminally-ill
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Support Care. 2012;6:481489.
38. Avery J, Baez M. Dignity therapy for major depressive disorder:a case
report. J Palliat Med. 2012;15:509.
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feasibility study of elders in long-term care. Palliat Support Care.
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40. Hall S, Goddard C, Opio D, Speck P, Higginson IJ. Feasibility, accept-
ability and potential effectiveness of dignity therapy for older people
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tive care psychotherapy. Palliat Med. 2012;26:703712.
41. Bentley B, OConnor M, Breen LJ, Kane R. Feasibility, acceptability
and potential effectiveness of dignity therapy for family carers of
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42. Becker R. How will Icope? psychological aspects of advanced illness.
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 CHAPTER62
Managing Cancer and Living
Meaningfully (CALM) Therapy
Sarah Hales, Christopher Lo, and Gary Rodin
RATIONALE FOR CALM
Advanced and life-threatening cancer brings multiple chal-
lenges, including the progressive physical burden of disease,
complex treatment decisions, and significant treatment toxicity.
These changes potentially undermine self-esteem and the sense of
meaning and purpose in life, and they may evoke fears related to
dependency, isolation, physical suffering, and mortality.
Symptoms of anxiety and post-traumatic stress are common in
individuals with metastatic cancer; however, advancing disease
may also provide an opportunity for psychological growth and
development, an outcome referred to as post-traumatic growth.1
This is consistent with the developmental crisis triggered by the
threat of impending mortality that Erikson2 suggested may lead
to either despair or to psychological growth.
Managing Cancer and Living Meaningfully (CALM) therapy
is a brief, manualized, supportive-expressive therapy3 that is
intended to address the practical and profound issues that face
individuals with metastatic cancer. This intervention emerged
from a longitudinal program of research4,5 and from relational,6
attachment,7 and existential theory.8 It aims to alleviate distress
and to promote psychological growth by facilitating affect regu-
lation, problem-solving, and reflection in domains that typically
present challenges to patients and caregivers facing metastatic
cancer. The short-term nature of the intervention allows CALM
to be delivered to patients with limited life expectancy and to be
practically feasible in oncology and healthcare settings. The sense
of limited time and of a foreshortened future in individuals with
advanced disease may heighten their motivation to seek help and
to engage in such an intervention.
CALM shares features with other psychotherapeutic inter-
ventions that have been developed for patients with advanced
disease. These include supportive-expressive (Chapter 70),
cognitive-existential, 8,9 and meaning-centered (Chapter 60)
group psychotherapy interventions. As an individual therapy,
CALM can be tailored to the unique needs of patients and allows
privacy regarding the personal and sensitive issues that may arise,
and flexibility regarding the content and timing of sessions. The
latter is important in order to accommodate the needs of patients
struggling with fluctuating health status, complicated treatment
schedules, and unpredictable hospitalizations. CALM shares
with dignity therapy (see Chapter 61) a focus on identity and
self-concept and death preparation for patients near the end of
life. However, CALM is intended for patients earlier in the course
of illness (usually greater than 6months prognosis), when they are
as engaged with living as they are with facing the end of life.
STRUCTURE OF CALM
CALM optimally consists of six individual sessions of 45 to 60
minutes, delivered over a three- to six-month period, although the
number of sessions may vary, depending on the clinical circum-
stances. The CALM sessions address four broad and interrelated
domains found to be important and relevant in this population:4,5
(1) symptom management and communication with healthcare
providers, (2) changes in self and relations with close others,
(3)sense of meaning and purpose, and (4)the future and mortal-
ity (see Figure 62.1). These domains are addressed with all patients
at some point during the intervention, although the sequence
and relative emphasis on each domain vary, depending on their
urgency and relative importance in each case. Each participants
primary caregiver (e.g., spouse, adult son or daughter or friend) is
offered the opportunity to participate in one or more sessions to
allow exploration of the relationship between the patient and his
or her primary caregiver and to support the dyad in anticipating
and preparing for the future.
Symptom Management
and Communication with
Healthcare Providers
Sense of Meaning Changes in Self and
and Purpose Relations with Close
Others
The Future and Mortality
Figure62.1 The domains of CALM therapy.
488 Section X evidence-based interventions
THE CALM PATIENT
CALM is intended for patients with advanced and life-threatening
cancer who have some interest and capacity for reflection and
who are physically and cognitively well enough to engage in psy-
chotherapeutic sessions over a three- to six-month period. Many
such individuals have concerns about being flooded by unpleas-
ant emotions, although CALM can help such individuals process
and better tolerate unavoidable distressing thoughts. Those who
are interested in thinking only positive thoughts may be unsuit-
able for the intervention, although an avoidant strategy of this
kind almost inevitably becomes untenable with progressive dis-
ease. Appropriate candidates may vary in their capacity for affect
regulation, trust in a helping relationship, and fear of exposure
and reflective capacity, which must be taken into account in the
conduct of the therapy.
THE CALM PROCESS
The following elements are the active ingredients of CALM ther-
apy that contribute to its therapeutic effect.
The Supportive Relationship
The most important element of CALM therapy is the
patient-therapist relationship. The openness of the therapist and
the patient to each other at this time of tragedy and crisis allows
depth in the relationship to develop in a relatively short period
of time. The CALM therapist consistently works to understand
empathically the patients felt experience, and to understand
its meaning. Therapists become witnesses to the experience of
patients, helping them to address fears of isolation and depen-
dency, to manage feelings of grief and loss, and to identify their
strengths and potential adaptive coping strategies.
Authenticity
The therapeutic stance is one of authentic engagement with
the patient. Authenticity in this context refers, not to verbal
self-disclosure, but to mutual emotional presence. Therapists
accept and resonate with the fears and hopes of the patient, includ-
ing assumptions that their life is not worth living or that they are
an unwanted burden on others. Paradoxically, the recognition
that these are personal beliefs, rather than absolute or immutable
truths, allows alternate possibilities and other perspectives to be
considered.
Shifting Frame and Flexibility
Fluctuations in patients clinical state, symptom control, and
the receipt of prognostic news may drastically alter their capac-
ity or motivation for self-reflection. Such changes may necessi-
tate shifts between exploratory and supportive approaches. The
changing clinical status of patients and the conflict with other
appointments, tests, and treatments may also require adjustment
of the content or timing of sessions. Although the brief nature
of the intervention and the threat of mortality bring termina-
tion of the sessions to the foreground early in the treatment,
clinical deterioration or death can occur unexpectedly or sud-
denly, without the opportunity to negotiate termination with the
patient.
Modulation of Affect
Emotional hyperarousal and constriction may occur transiently,
persistently, or alternately, causing distress and interfering with
the processing of emotional experience. CALM therapists aim to
help patients modulate the intensity of emotions to keep them
within a tolerable range, to facilitate safe access to their inner
life, and to help them make sense of what they are feeling and
thinking. The communication of emotions within an atmo-
sphere of support and understanding allows patients to develop
a greater capacity and confidence in their ability to manage dis-
turbing and intense emotions that arise in the context of their
illness.
Renegotiation of Attachment Security
The threat of illness heightens attachment needs and makes
them more salient. Individuals with less confidence in the
availability of attachment relationships or who are inf lexibly
self-reliant tend to have greater difficulty adjusting as the dis-
ease progresses. Disequilibrium in marital and other intimate
relationships is common in these circumstances. Those who
have tended to be self-sufficient and more comfortable in the
caregiving role may feel threatened by the growing dependency
imposed by their disease. Those who tend to worry about the
availability of others may experience increasing fears about
this. CALM therapy addresses the emotional disruption caused
by these potential attachment crises and helps individuals and
their caregivers re-establish equilibrium in their attachment
relationships.
Mentalization and Double Awareness
Individuals vary widely in their capacity for self-reflection,
and what has been termed mentalization (i.e., the capacity to
reflect on feeling states, to distinguish them from literal facts,
and to accept the possibility of multiple perspectives). This is
a particular challenge with advanced disease because the lit-
eral fact of the illness and of impending mortality may obscure
that states of hopelessness or demoralization are mental con-
structions, even in such circumstances. Being able to mental-
ize diverse feeling states allows individuals to sustain a double
awareness10 of the possibilities for living, as well as the even-
tuality of dying. The CALM therapist promotes this by under-
standing and validating the experience of the patient and by
entertaining the possibility of multiple and complex psycholog-
ical responses to an incontrovertible dire prognosis. This is to be
distinguished from false reassurance or from the correction of
cognitive distortions.
The Joint Creation of Meaning
Relational theory emphasizes mutuality in the therapeutic situ-
ation, wherein patients and therapists co-create meaning and
understanding of the patients experience.6 The meanings that
patients attach to their life history, to their accomplishments
and failures, and to their disease are explored in CALM. New
meanings, jointly created by the patient and therapist, may also
emerge in the dialogue regarding the patients life trajectory,
goals, and the suffering associated with the disease and the end
of life. Interpretations follow from dialogue and exchange and are
offered tentatively and in the spirit of collaboration.

THE CONTENT OF CALM
The content of CALM is organized into four interrelated domains.
These are defined in the following sections.
Domain One:Symptom Management and
Communication with Healthcare Providers
The disease, the symptoms, and the cancer treatment process are
central concerns of patients and their families. How to manage
these concerns and the decision-making process are complex tasks
that overwhelm and confuse many patients. Support for this pro-
cess and for the relationship with the medical team is an impor-
tant dimension of CALM. Important dimensions of Domain One
may include the following elements:
Understanding the Disease and Managing Symptoms
CALM therapy provides a venue where patients can discuss infor-
mation that they have received from their healthcare providers,
their friends, and other sources. In some cases, this may involve
clarifying or directing them to appropriate sources of information
or to other healthcare providers, including specialized palliative
care. Therapists may also facilitate more direct communication by
patients to their healthcare providers about their symptoms and
concerns. The intent is to support patients so that they can com-
municate and negotiate effectively with their healthcare providers
in order to receive more optimal care for their symptoms.
Supporting Medical Decision-Making
For many patients, decisions regarding the initiation, continua-
tion, or cessation of medical treatments are distressing and dif-
ficult, particularly when first-line treatments have failed. While
the more recent empowerment of patients in their medical care
has many benefits, some may feel overwhelmed by participation
in complex treatment decisions. They may not understand the
information that they have received and therefore may have dif-
ficulty making an informed and autonomous decision. Treatment
decisions may also be complicated by their own desperation or by
perceived pressure from their family or from the treatment team.
CALM therapists can help patients to explore the range of feelings
that emerge in relation to treatment decisions and to weigh their
own feelings, distinct from those they perceive in their health-
care providers, family, or friends. The role of CALM therapists as
insiders in the cancer system but separate from the cancer treat-
ment team makes them uniquely valuable in the decision-making
process. However, therapists must take into account their own
feelings and vicarious preferences, as they engage in questions
about treatment that have high emotional and medical stakes.
Supporting Collaborative Relationships with
HealthcareProviders
The relationship with the treatment team is often profoundly
important to the patient and may be a source of support and/or
one that may trigger anxieties about dependency, burden, rejec-
tion, and abandonment. Some patients tend to disavow their
own needs or to refrain from seeking assistance, while others
may be demanding in ways that antagonize the treatment team
or adversely affect their care.11 Even in well-organized treatment
settings, the fallibility of healthcare providers, lapses in continu-
ity of care, and inevitable limitations in healthcare resources may
be frustrating and distressing to patients and their families. The
Chapter62 calm therapy 489
CALM therapist listens empathically to such experiences of dis-
appointment and finds ways to support or repair the alliance with
the treatment team, without taking sides in the problem.
Domain Two:Changes in Self and Relations
with Close Others
Self-Concept
The presence of an advanced and progressive disease that will
end life, the changes in physical appearance, and the loss of the
capacity to engage in physical, social, and occupational activities
all may undermine self-worth and personal identity. Indeed, for
some, the loss of personhood that occurs in the course of cancer
treatment is one of the most devastating consequences of the dis-
ease. Being known in CALM therapy helps patients to recover
and sustain their sense of personhood that has been lost as a result
of the ravages of the illness and the inevitable objectification that
occurs in cancer treatment settings.
Caregiving and Care Receiving
The experience of advanced disease often leads to dramatic changes
in primary relationships, including in the household division of
labor, financial responsibilities, parenting roles, and/or emotional
and physical intimacy. Many patients with advanced disease are
able to flexibly seek and obtain emotional and practical support
from loved ones. In others, however, fears of abandonment or
of dependency may contribute to anxious clinging or to dismis-
sive avoidance of needs. These relational tendencies may interfere
with the ability to seek or obtain support from caregivers or to
take their needs into account, resulting in tension and disequilib-
rium in these relationships. Identifying and acknowledging the
relational tendencies of patients and their caregivers can facilitate
mutual understanding and adjustments in behavior that may lead
to more satisfying and supportive relationship experiences.
Supporting Children and Other Family
While CALM therapy sessions do not usually include young chil-
dren or extended family, their intent is to support the patient and
caregiver dyad. This may, in turn, help the adaptation and adjust-
ment of the larger family network. Acommon question that arises
in CALM therapy is what and when to tell children and other fam-
ily members about the illness and how to support them through-
out the process. CALM therapy provides a place where patients
can discuss and consider this issue, taking into account the devel-
opmental capacity and needs of the children in the family, the vis-
ible signs of the disease, and the expected survival.
Domain Three:Sense of Meaning and Purpose
The Life Narrative
Empathic understanding and co-constructing an individuals
personal narrative help individuals to feel known in continuity,
to clarify what has been important to them in their lives, and to
plan for the time that remains. To what extent they have felt sup-
ported, neglected, or traumatized in their life and to what extent
they tend to be optimistic or pessimistic in the face of uncer-
tainty all contribute to their experience of illness. By weaving
together with the patient the life narrative, a sense of coherence
and intelligibility about his or her life can emerge. It may also
help patients to perceive a sense of accomplishment and legacy
about their lives.
490 Section X evidence-based interventions
The Personal Meaning of the Disease
The meaning of the disease is determined by the intersection of
factors related to the disease, the individual, and the social and
family environments. It may variably represent the frailty and
transience of human life, an unfair or unjust blow, a burden to
others, or the will of God. Some blame the illness on stress caused
by themselves or others or by the environment. Articulation of
these explicit or implicit meanings provides patients with a way
of understanding their experience in illness and allows them to
reconsider meanings that are burdensome or punitive toward
themselves or others.
Priorities and Goals in the Face of Advanced Disease
The experience of advanced disease and end of life often leads to a
reconsideration of priorities and life goals. There may be mourn-
ing of the loss of physical functioning or productivity and a new
emphasis on other domains of accomplishment, meaning, or gen-
erativity toward others.7 As well, the recognition of finitude raises
questions about how to spend remaining time. By encouraging
consideration of priorities and goals, therapists can help patients
to live more fully in the present, even when facing the end of life.
In this process, therapists must take into account and disentangle
their own desires for patients and their own fantasies about how
they would live near the end of life.
Domain Four:The Future and Mortality
Acknowledgment of Anticipatory Fears
Fears about dying and death are a common experience for those
with advanced disease12,13 although they are often not addressed,
even in palliative settings. The emphasis on hope and positive
thinking that is common in the cancer community and in the
media can be experienced as silencing and dismissing of the fears
and concerns triggered by a diagnosis of life-threatening disease.
Such fears are likely to be heightened by specific symptoms such as
dyspnea, pain, or dysphagia. The CALM therapist provides oppor-
tunities for patients to speak openly about dying and death, to
consider advance care planning, and to have anxiety about dying
and death understood and validated.
Balance of Living and Dying
The goal of the CALM therapist is to create opportunities for
patients to explore the range of their feelings, so that they can hold
on to what is satisfying and meaningful in their lives while also
facing their fears and realities. Such double awareness10 allows
them to make appropriate plans for their care and for that of their
family, while also remaining engaged in life. When this does not
occur, decision-making and personal planning, such as arrang-
ing a will or settling personal financial matters, may be neglected.
On the other hand, the continuous immersion in thoughts of ill-
nesses, dying, and death may interfere with the capacity to sustain
meaningful engagement in life. CALM therapy helps patients to
sustain the balance of living and dying so that patients can plan
for the future, mourn their losses, and continue to live life in the
present.
Advance Care Planning
Research has consistently identified advance care planning, life
closure, and death preparation activities as important compo-
nents of a positive dying experience.14 Unfortunately, healthcare
providers and families may avoid addressing them until too late
in the course of illness for adequate attention. Gentle inquiries
by CALM therapists about hopes and fears of patients about the
future and the end of life may give patients license to discuss
issues. Such discussions may relieve anticipatory anxieties and
may benefit the family and friends who will survive them.
CALM THERAPIST SELECTION,
TRAINING,AND SUPERVISION
CALM therapists have come from a variety of healthcare back-
grounds, including social work, psychology, psychiatry, nursing,
and medicine, usually with some experience as therapists and
in psychosocial oncology. Training includes an initial didactic
training workshop, followed by supervision of cases by a trained
CALM clinician. CALM therapists do not simultaneously deliver
primary oncology or palliative care to patients in CALM therapy,
in order to allow attention to the experience of patients in a con-
templative rather than action-oriented mode. At the same time,
their knowledge of cancer and its treatment facilitates under-
standing when exploring such issues as symptom management,
treatment options, and aspects of advance care planning.
A regular time for supervision is an integral part of the CALM
therapy model in view of the challenges this therapy presents.
It requires courage to explore death anxiety and death prepa-
ration, to tolerate existential uncertainties, and to be comfort-
able with the flexibility that is required. Supervision provides an
opportunity to support, validate, and monitor therapists and to
ensure the quality and integrity of the intervention. Supervision
also provides an opportunity for therapists to present and clarify
their formulation of the dynamics to ensure that goals of CALM
are sensitively applied and suitably individualized for each
patient.
The therapeutic encounter with patients with advanced and ter-
minal disease may be one of the most intimate and profound of
all therapeutic relationships. The universality and the inescapabil-
ity of the dilemma facing those with advanced disease create an
intimate bond and bring poignancy and power to the therapeutic
relationship. Indeed, accepting the shared experience of human
mortality and their own vulnerability may be one of the single
most important challenges for therapists who allow themselves to
become immersed in the emotional world of the terminally ill.
EVIDENCE FOR CALM THERAPY
A phase II intervention-only pilot study of CALM15 enrolled a total
of 50 advanced cancer patients. Despite attrition due to disease
advancement and death, the study found significant reductions in
depressive symptoms and death anxiety in therapy participants
over time. There was also a significant improvement in spiritual
well-being over time. Acompanion pilot qualitative study found
that participants valued the CALM intervention and indicated
that it made a positive and unique contribution to their cancer
experience. Five interrelated themes were identified based on par-
ticipants accounts of their CALM experience. CALM was found
to provide (1)a safe place to process the experience of advanced
cancer, (2)the permission to talk about death and dying, (3)assis-
tance in managing the illness and navigating the healthcare sys-
tem, (4)the resolution of relational strain, and (5)the opportunity
to be seen as a whole person within the healthcare system. This

contribution was unique in that it provided an experience that
was not encountered anywhere else along the participants cancer
journey.16
A large randomized controlled trial comparing CALM to usual
care in patients with metastatic solid tumor cancers is now in
progress in Canada (ClinicalTrials.gov Identifier:NCT01506492).
The primary outcome for this study is the severity of depressive
symptoms, and secondary outcomes are distress related to death
and dying, attachment security, spiritual well-being, quality of life,
post-traumatic growth, and satisfaction with care. Ongoing com-
panion research is studying caregivers and the potential impact
of CALM on relationship with caregivers, on reflective aware-
ness within CALM participants, and on the practice and pro-
fessional identity of CALM therapists. Arandomized controlled
trial is also now being conducted in Germany (ClinicalTrials.gov
identifier:NCT02051660), and teams from Italy and the United
Kingdom are conducting pilot studies and adapting CALM to
their settings.
CONCLUSION
CALM is a promising, new individual psychotherapy that has
shown evidence of alleviating depression and death anxiety and
increasing the sense of meaning and purpose in life in patients
with advanced cancer. The threat of impending mortality in
this circumstance may heighten the motivation to participate
in this intervention and the power of the therapeutic encounter.
International training in CALM and dissemination of this inter-
vention are underway, and accumulating evidence may support
its implementation as a standard of psychosocial care for patients
with metastatic cancer and their caregivers.
REFERENCES
1. Sumalla EC, Ochoa C, Blanco I. Posttraumatic growth in can-
cer:reality or illusion? Clin Psychol Rev. 2009;29(1):2433.
2. Erikson EH. The Life Cycle Completed. NewYork:W. W.Norton,
1982.
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3. Hales S, Lo C, Rodin G. Managing Cancer and Living Meaningfully
(CALM) Treatment Manual:An Individual Psychotherapy for Patients
With Advanced Cancer. Toronto:Princess Margaret Hospital,
University Health Network; 2010.
4. Rodin G, Lo C, Mikulincer M, Donner A, Gagliese L, Zimmermann
C. Pathways to distress:the multiple determinants of depression,
hopelessness and the desire for hastened death in metastatic cancer
patients. Soc Sci Med. 2009;68(3):562569.
5. Lo C, Zimmermann C, Rydall A, etal. Longitudinal study of depres-
sive symptoms in patients with metastatic gastrointestinal and lung
cancer. J Clin Oncol. 2010;28(18):30843089.
6. Mitchell SA. Relational Concepts in Psychoanalysis. Cambridge,
MA:Harvard University Press; 1988.
7. Bowlby J. Attachment. NewYork:Basic Books; 1982.
8. Yalom ID. Existential Psychotherapy. NewYork:Basic Books; 1980.
9. Kissane DW, Bloch S, Smith GC, etal. Cognitive-existential group
psychotherapy for women with primary breast cancer:a randomised
controlled trial. Psycho-Oncology. 2003;12(6):532546.
10. Rodin G, Zimmermann C. Psychoanalytic reflections on mor-
tality:a reconsideration. J Am Acad Psychoanal Dyn Psychiatry.
2008;36(1),181196.
11. Tan A, Zimmermann C, Rodin G. Interpersonal processes in pallia-
tive care:an attachment perspective on the patient-clinician relation-
ship. Palliat Med. 2005;19(2):143150.
12. Lo C, Hales S, Zimmermann C, Gagliese L, Rydall A, Rodin G.
Measuring death-related anxiety in advanced cancer:preliminary
psychometrics of the Death and Dying Distress Scale. J Pediatr
Hematol Oncol. 2011;33(Suppl 2):S140-S145.
13. Hales S, Chiu A, Husain A, etal. The quality of dying and death in
cancer and its relationship to palliative care and place of death. J Pain
Symptom Manag. 2014; doi:10.1016/j.jpainsymman.2013.12.240.
14. Hales S, Zimmermann C, Rodin G. The quality of dying and death.
Arch Intern Med. 2008;168(9):912918.
15. Lo C, Hales S, Jung J, etal. Managing Cancer and Living
Meaningfully (CALM):phase 2 pilot trial of a brief individual psy-
chotherapy for patients with advanced cancer. Palliat Med. 2014;
28(3):234242.
16. Nissim R, Freeman E, Lo C, etal. Managing Cancer and Living
Meaningfully (CALM):a qualitative study of a brief individual
psychotherapy for individuals with advanced cancer. Palliat Med.
2012;26(5):713721.
 CHAPTER63
Mindfulness Meditation and
Yoga for Cancer Patients
Linda E.Carlson
INTRODUCTION
In the previous version of this chapter, written in 2008, Iconducted
a comprehensive review of all studies reporting on meditation and
yoga interventions for people with cancer, including comprehen-
sive summary tables. This is simply not possible in this updated
chapter. The growth in the popularity of these approaches and
subsequent publications has been exponential. Currently there are
more than 40 original studies and many review articles reporting
on mindfulness meditation interventions alone, including four
reviews and meta-analyses just in 2012 and 2013.14 Similarly, in
the year 2012, seven independent review articles on yoga for can-
cer patients were published,511 reporting on anywhere from 122
to 716 different studies, depending on the stringency of the inclu-
sion criteria applied.
Hence, the approach taken in this chapter is to cite and sum-
marize the conclusions of the various literature reviews, directing
readers there for details, and to describe some of the most recent,
well-designed, and innovative studies to highlight the cutting
edge of research in this area.
WHAT CHARACTERIZES MEDITATION
ANDYOGA APPROACHES?
In the context of healthcare, meditation is considered a form of
mind training, a skill that anyone can develop gradually over
time, which may have the potential to facilitate coping with a
host of stressors endemic in the fast pace of modern society. Yoga,
too, includes a philosophy, ethics, and meditation practice that
complement the familiar postures or asanas practiced in most
mainstream studios. Both the physical postures and medita-
tion practices of yoga have been utilized in healthcare settings.
Although there is significant overlap between meditation and
yoga, each practice will be described separately, followed by a
summary of the empirical literature in each area, focusing on
applications in psycho-oncology settings.
MEDITATION
There are many ways to define the key characteristics of medi-
tation; applying one definition over another may result in some
techniques being ruled out as bona fide meditation practices. All
meditation practices do have one thing in commonthe purpo-
sive direction of attention toward a specific target. Attention can
be directed toward one particular chosen object (for example,
repeating a sound or mantra, following the breath), which is often
known as concentration meditation, or on all mental events that
enter the field of awareness, which is called mindfulness medita-
tion. This distinction is useful, although it is not the only one that
can be made, and in practice these forms of meditation are not
always mutually exclusive.
In the past three decades, there has been a growing clinical
and research interest in the practice of mindfulness meditation,
due in large part to the pioneering work of Jon Kabat-Zinn at the
University of Massachusetts Medical Center. The program that
he devised in the late 1970s, based on intensive secular train-
ing in mindfulness meditation techniques, is now known as
mindfulness-based stress reduction (MBSR)12 and is described in
the next section. Various adaptations of MBSR have been devel-
oped for different conditions; as a family, these are often referred
to as mindfulness-based interventions (MBIs).
MBSR is an eight-week structured group program that incor-
porates intensive training in mindfulness meditation with group
reflection and mindful Hatha yoga practice. The foundations of
MBSR stem from Buddhist philosophy and practice, but it is free
from any religious context. Participants learn fundamentals of
the mind-body connection and how their interpretations of the
world can cause both physical and mental suffering. The concept
of mindfulness is introduced as learning to be present in life as
it is occurring, applying attitudes of kindness, patience, curios-
ity, acceptance, letting go, and nonjudgment. MBSR participants
begin to recognize that the amount of mental energy spent regret-
ting the past or worrying about the future has resulted in miss-
ing the present moment and can cause depression and anxiety.
Through the application of careful attention in this way, a pro-
cess of re-perceiving can occur whereby the worldview that had
perpetuated suffering is diminished. The primary meditation
techniques used to cultivate mindfulness in the MBSR program
are the body scan, sitting meditation, walking meditation, and
loving-kindness meditation, in conjunction with mindful yoga
postures.
For people dealing with cancer, many of the issues that arise
are amenable to an MBSR approach. Fears of an uncertain future,

pain, and death are common reactions to a cancer diagnosis.
Mindfulness training can offer one venue for coping with these
often uncomfortable and difficult emotions in a safe and con-
trolled container of ones own making. By adopting a stance of
observer to the overwhelming thoughts and emotions, patients
can take a step back and allow themselves to process these expe-
riences at their own pace, seeing their experience as constantly
changing, and their distressing thoughts as simply mind-events
that are often untrue. Ultimately, they begin to see that they are
more than a cancer patient; they are connected to, and supported
by, everyone else who shares this human condition. Hence, there
are theoretical reasons to believe that meditation training in gen-
eral, or MBSR in particular, has the potential to be beneficial to
people going through a cancer experience. Based on these con-
cepts, we adapted MBSR to the specific needs of cancer patients
and provide an intervention called mindfulness-based cancer
recovery (MBCR).13 MBCR is the specific mindfulness-based
approach reported on in all our publications.
Summary of the Meditation Literature
There is now a large body of work investigating the efficacy of
MBIs for patients with various types of cancer. This literature
itself has been reviewed repeatedly just since 2010. 14,1416 A2011
meta-analysis of 19 studies reported medium effect sizes on mood
(d=0.42) and distress (d=0.48).15 Two other recent meta-analyses
focused on breast cancer patients exclusively, reporting large effect
sizes on stress (d=0.71) and anxiety (d=0.73) across nine studies
with various designs1 and medium effects on depression and anxi-
ety in three randomized controlled trials (RCTs).2 Piet etal. exam-
ined 22 randomized and non-randomized studies and reported
moderate effect sizes on anxiety and depression in non-randomized
studies (0.6 and 0.42, respectively), and slightly smaller effects for
RCTs.4 Finally, Carlson reviewed studies applying levels of evidence
criteria and concluded that there is Level 1 (highest) evidence for
the efficacy of mindfulness-based interventions in oncology.3
Stepping back to look at the original studies, the first publica-
tion of a MBI in cancer was from our group:an RCT in which
89 patients with a variety of cancer diagnoses were randomized
to MBSR or a wait-list control condition.17 Patients in the MBCR
program improved significantly more on mood states and symp-
toms of stress than those in the control condition, with large
improvements of approximately 65% on mood and 35% on stress
symptoms. After the wait-list group had the program, the imme-
diate and wait-list groups were combined and all were followed up
six months post-intervention. Similar benefits were maintained
at that time for all participants.18 In the combined group, more
home practice was associated with greater decreases in overall
mood disturbance, and the greatest improvements were seen on
anxiety, depression, and irritability.
Since that time, many pre-post observational studies without
comparison groups, and RCTs with usual care or wait-list con-
trol groups, have been published, citing improvements in a range
of outcomes, including quality of life domains such as emotional,
social, role, and physical functioning, and psychological improve-
ments on measures including stress symptoms, anxiety, depres-
sion, fear, and avoidance (for reviews see1416). Other outcomes
assessed include cancer-related symptoms such as fatigue, pain,
and sleep, and existential positive psychology outcomes including
spirituality, post-traumatic growth, loss, and grief.
Chapter63 mindfulness meditation and yoga 493
While some of the RCTs that compare MBIs to wait-list or usual
care controls now have quite large sample sizes (e.g., 1921), only
a few studies have included randomization to active comparison
groups. One exception is a three-armed trial in which Henderson
et al.22 randomized 172 early stage breast cancer patients into
MBSR, a nutrition education program matched on contact time,
or a usual care control condition, and included follow-up assess-
ments post-program, one and two years later. The MBSR group
improved more than the other two on a wide range of measures
at the post-program assessment, including quality of life, active
behavioral and cognitive coping, avoidance, and spirituality, as
well as depression, hostility, anxiety, unhappiness, meaningful-
ness, and several measures of emotional control. These group
differences eroded over time, however, as participants in the
other two groups continued to improve more slowly, such that by
24months the only group differences apparent were on measures
of anxiety, unhappiness, and emotional control, still favoring
MBSR over usual care, but not the other active intervention. From
this study, it appears that MBSR participation may help speed up
the natural course of cancer recovery across many domains, but it
may also add a shift in perspective and skills in emotion regula-
tion that are lasting and distinct.
More recently, we conducted two comparative effectiveness
RCTs of the MBCR program; MINDSET and I-CAN Sleep. The
MINDSET study directly compared MBCR to another active
group intervention for cancer support in over 270 distressed
breast cancer patients, supportive expressive therapy (SET), and a
minimal intervention control condition (a one-day stress manage-
ment seminar). Similarities between interventions are the group
format, size, structure, and contact hours. However, the two treat-
ment modalities are quite distinct in their content, focus, and the-
oretical underpinnings, with the focus of SET on group support
and emotional expression. This trial was unique in a number of
ways:(1)we included only distressed breast cancer survivors, in
order to avoid floor or ceiling effects on outcomes wherein par-
ticipants dont improve because they are already doing quite well;
(2)outcomes were both psychological and biological; (3)psycho-
logical outcomes included measures of symptom reduction (mood
disturbance, anxiety, stress symptoms) as well as enhancement of
positive psychological constructs (post-traumatic growth, spiritu-
ality); (4)participants in the control group were re-randomized
after the immediate pre-post intervention period into one of the
two longer interventions; (5)we followed participants for a full
year post-program to determine long-term outcomes; and (6)the
study was powered for moderator analyses to determine if out-
comes differed across groups for people with different baseline
characteristics, personalities, and preferences.
On primary outcomes, women in MBCR improved more on
stress symptoms compared with women in both the SET and con-
trol groups, on quality of life compared with the control group,
and in social support compared with the SET group, 23 but both
active intervention groups cortisol slopes (a marker of stress
responding) were maintained over time relative to the control
group, whose cortisol slopes became flatter. Steeper slopes are
generally considered to be healthier. The two intervention groups
also maintained their telomere length, a potentially important
marker of cell aging, in peripheral blood mononuclear cells over
time compared to controls. 24 Over the longer-term follow-up
of one year, the MBCR participants maintained all the benefits
494 Section X evidence-based interventions
received in the group, while the SET participants still had higher
levels of stress, mood disturbance, and lower quality of life.25 This
suggests that the eight-week group provided longer-term protec-
tion from distress for these women compared to those who did
not participate.
The most preferred treatment (by over half of participants) was
MBCR, and those who received their preferred treatment (regard-
less of what it was) improved more on quality of life and spiritual-
ity over time.26 Preference seemed to be a more powerful predictor
of outcome than individual personality traits. This begins to tell
us something beyond what can be learned from classic RCT
designspreference matters. Treatment credibility and expec-
tancy for benefit are likely important components in harnessing
the power of the individual to produce meaningful change.
In another head-to-head comparative effectiveness trial for
cancer survivors with insomina, we also tried something novel
for behavioral interventionsblinding participants to treat-
ment. We did this by advertising the study simply as I-CAN
Sleep: non-drug treatments for insomnia in cancer survivors,
and didnt tell participants what the treatments were until they
were already enrolled. Even then, they knew only about the one
they got; they did not know what the other treatment was.27 They
were randomly assigned to either MBCR, or cognitive behavioral
therapy for insomnia (CBT-I), the gold standard treatment. This
is a very tough test of efficacy for MBCR, and was designed as a
non-inferiority trial to determine whether the novel treatment for
sleep (MBCR) was as good as the gold standard.
In total, 111 patients with a variety of cancer types were ran-
domly assigned to CBT-I (n=47) or MBCR (n=64).28 Immediately exercise, breathing techniques, and meditation training. Over the
post-program, MBCR was inferior to CBT-I for improving the pri-
mary outcome of insomnia severity, but MBCR was non-inferior
at follow-up three months later. The time to fall asleep was reduced
by 22 minutes in the CBT-I group and by 14 minutes in the MBCR
group at follow-up. Similar reductions in wake time after sleep
onset were observed for both groups. Total sleep time increased by
0.60 hours for CBT-I and 0.75 hours for MBCR. CBT-I improved
sleep quality and dysfunctional sleep beliefs, and both groups
resulted in reduced stress and mood disturbance. This indicated
that while MBCR was slower to take effect, it could be as effective
as the gold standard treatment for insomnia in cancer survivors
over time.
Recently, Monti etal.29 conducted a large RCT of a novel MBI
called mindfulness-based art therapy (MBAT), also in distressed
women with breast cancer. Atotal of 191 women were randomized
to either an eight-week MBAT intervention or a breast cancer edu-
cational support program. Both groups improved on psychosocial
stress and quality of life, but women with high stress levels at base-
line improved only in the MBAT group. This shows that this type
of intervention can be superior to other active interventions for
those with higher need.
One final example of stretching the boundaries of traditional
service delivery is a study we conducted of an online adaptation
of MBCR.30 The study was a wait-list RCT comparing those in the
online program to a group randomly assigned to wait for the next
online program. Our primary interest was feasibility: whether
people would sign up, and if they would complete the program
and get much benefit. The program was offered through a web-
site called emindful.com, which already offered online MBSR and
had a platform where people used webcams and microphones to
connect to live online groups. The participants attended each week
at a set time, like an in-person group, and could see and interact
with the instructor and the other participants in the online class-
room. We enrolled 62 people, and 83% of those completed the pro-
gram; these completion rates are similar to in-person programs,
which typically have dropout rates of about 20%. All partici-
pants said the program either met (40%) or exceeded (60%) their
expectations and all said they would recommend the program to
other cancer patients. There were significant improvements and
medium effect sizes in the online MBCR group relative to con-
trols for scores of total mood disturbance, stress symptoms, and
spirituality.31
In summary, evidence has accumulated through a number of
high-quality RCTs comparing MBIs to other active interventions,
showing superiority across a range of outcomes, in large sample
sizes over substantial follow-up periods, but still mostly in breast
cancer survivors. More work is needed for other types of cancer,
late stage patients, and patients undergoing active treatments.
YOGA
The term yoga is derived from the Sanskrit word yug, mean-
ing union.32 This, according to traditional yoga philosophy, is
the ultimate intent of a yoga practiceto unite the individual
with the totality of the universegiving yoga students a deeper
awareness of life, one in which they no longer experience living
as separate, but instead as part of the larger whole. 32 The tech-
niques of yoga include ethical practice for daily living, physical
centuries, the practice of yoga postures has evolved to exercise
every muscle, nerve, and gland in the body.32 The postures pro-
vide a combination of static and active stretching, isometric and
dynamic strengthening, which enables practitioners to gain flex-
ibility and to develop stability, strength, and balance.33 The type
of yoga widely practiced at mainstream studios typically consists
of Hatha postures, but many subtypes are practiced.
Research Summary
There has been growing interest in investigating the efficacy of
yoga therapy in cancer care, with no fewer than seven reviews pub-
lished on this topic in 2012 alone.511 By now, about 18 randomized
controlled trials have been conducted, and over 100 uncontrolled
studies reported. Studies typically assess a multi-week yoga inter-
vention with practice of simple Hatha-based postures on a range
of self-reported outcomes compared to usual care, or more rarely,
attention control or another active intervention. Most studies
have been conducted on breast cancer patients either during or
after treatment.
In studies that conducted meta-analyses, overall large reduc-
tions in distress, anxiety, and depression were reported compared
to control groups, moderate reductions in fatigue, emotional, and
social function, small increases in physical function, 5,8 and mod-
erate increases in generally quality of life.5,8,10 Overall, reviewers
comment that the quality of trial designs is variable, with many
suffering from small sample sizes, selection bias, and lack of
follow-up, and most research has been conducted only on breast
cancer patients.
While the early research into yoga paralleled the meditation
research in investigating the effects in single groups of program

participants after program completion, or compared to usual care
or wait-list groups, recent trials have compared yoga programs to
other active interventions. Banerjee compared six weeks of yoga
classes to individual supportive counseling in a sample of 58
women with breast cancer undergoing radiation therapy (RT). 34
Clinically significant improvements were found in the yoga group
compared to the supportive care group on measures of anxiety,
depression, and stress. The women were also undergoing RT at
the time, and damage to DNA related to the RT was compared
between groups. The yoga participants had less evidence of cel-
lular damage than those in the counseling group.
Another similar RCT examined an integrative yoga program
compared to individual supportive-expressive therapy for 62
women undergoing chemotherapy (CT) for breast cancerthe
women practiced yogic breathing and meditation prior to each CT
infusion and at home between treatments.35 The yoga group had
less post-CT and anticipatory nausea, lower CT-related toxicity,
and less anticipatory vomiting than the control condition.
More recently, a small RCT compared an Iyengar yoga inter-
vention to a health education control condition for breast cancer
survivors with significant fatigue. 36 Sixteen women in the yoga
group were compared to 15 in health education. Fatigue severity
declined and vigor improved from baseline to post-treatment and
follow-up three months later in the yoga group relative to controls,
but both groups improved on depressive symptoms and perceived
stress. Rao etal.37 and Vadiraja etal.3840 from the same research
group both compared yoga to a supportive therapy with educa-
tion for women with stage II and III cancers undergoing surgery,
CT, +/ RT. The program was integrated yoga administered indi-
vidually by an instructor and included asanas (physical postures),
pranayama (breathing exercises to control energy flow), medita-
tion, and yogic relaxation techniques with imagery. Aminimum
of three in-person sessions were delivered per week for six weeks
during RT. The comparison group received individual 15-minute
supportive therapy and education sessions once every 10days dur-
ing the six weeks of RT. Women in the yoga intervention improved
more on state anxiety and symptom distress, 37 anxiety, depres-
sion, stress,38 positive and negative affect, as well as cognitive and
emotional functioning, 39 and overall physical distress but not spe-
cific symptoms.40 They also had lower levels of morning cortisol
and average cortisol.
In summary, yoga can now be recommended for breast cancer
patients during and after active treatment to provide short-term
relief for a variety of symptoms and for improving overall qual-
ity of life. In addition, yoga appears to have the potential to help
to control treatment-related symptoms such as nausea and vom-
iting and to help with physical rehabilitation from cancer treat-
ments. It is important to highlight the specific details of different
yoga interventions, since some focus more heavily on meditation
and breathing practices, whereas others focus on the more physi-
cal postures. Outcomes of these different focuses of practice may
be quite specific, so making across-the-board comparisons is not
always advisable.
OVERALL CONCLUSIONS
The field of study within psycho-oncology investigating the
effects of meditation and yoga interventions has increased sub-
stantially in the last decade, both in terms of popular interest and
Chapter63 mindfulness meditation and yoga 495
the strength of the evidence base. We can now confidently recom-
mend that people with many types and stages of cancer can benefit
from mindfulness-based interventions as well as therapeutic yoga
programs. Effects are repeatedly demonstrated across psychologi-
cal measures, including stress, anxiety, and depressive symptoms,
and management of symptoms such as fatigue, pain, and sleep
problems. Research has also been accumulating investigating the
potential effects on flourishing or post-traumatic growth after
cancer, but more work needs to be done in this area. While not a
focus of this review, the effects of programs on biomarkers such as
cortisol levels are also being reported with increasing frequency.
The potential meaning of these findings in terms of disease pro-
gression and treatment outcomes has yet to be systematically or
rigorously explored, but holds potential as an important comple-
ment to conventional cancer treatments.
REFERENCES
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stress reduction on mental health of breast cancer patients:a
meta-analysis. Psycho-Oncology. 2013;22(7):14571465.
2. Cramer H, Lauche R, Paul A, Dobos G. Mindfulness-based stress
reduction for breast cancer:a systematic review and meta-analysis.
Curr Oncol. 2012;19(5):e343-e352.
3. Carlson LE. Mindfulness-based interventions for physical con-
ditions:a narrative review evaluating levels of evidence. ISRN
Psychiatry. 2012 Nov 14;2012:651583.
4. Piet J, Wurtzen H, Zachariae R. The effect of mindfulness-based ther-
apy on symptoms of anxiety and depression in adult cancer patients
and survivors:a systematic review and meta-analysis. J Consult Clin
Psychol. 2012 Dec;80(6):10071020.
5. Buffart LM, van Uffelen JG, Riphagen II, etal. Physical and psycho-
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6. Levine AS, Balk JL. Yoga and quality-of-life improvement in
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9. Cramer H, Lange S, Klose P, Paul A, Dobos G. Can yoga improve
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cal significance of patient reported outcomes for cancer survivors.
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13. Carlson LE, Speca M. Mindfulness-Based Cancer Recovery:AStep-by-
Step MBSR Approach to Help You Cope With Treatment and Reclaim
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14. Shennan C, Payne S, Fenlon D. What is the evidence for the use
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15. Musial F, Bussing A, Heusser P, Choi KE, Ostermann T.
Mindfulness-based stress reduction for integrative cancer care:a
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tion among breast cancer survivors:a literature review and discus-
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17. Speca M, Carlson LE, Goodey E, Angen M. Arandomized, wait-list
controlled clinical trial:the effect of a mindfulness meditation-based
stress reduction program on mood and symptoms of stress in cancer
outpatients. Psychosom Med. 2000;62(5):613622.
18. Carlson LE, Ursuliak Z, Goodey E, Angen M, Speca M. The effects of
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Thomas PW. Effectiveness of mindfulness-based stress reduction in
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24. Carlson LE, Beattie T, Giese-Davis J, etal. Mindfulness-based cancer
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survivors. Cancer. 2014.
25. Carlson LE, Tamagawa R, Stephen J, Doll R, Speca M. Reandomized
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Psycho-Oncology. 2014.
26. Carlson LE, Tamagawa R, Stephen J, etal. Tailoring mind-body
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 CHAPTER64
Art and Music Therapy
Paola M.Luzzatto and Lucanne Magill
ARTTHERAPY
Introduction
Art therapy has its roots in art and psychoanalysis, and it is
based on the notion that imagination is an essential part of men-
tal functioning, and that individuals may project their internal
world into visual images. The influence of psychoanalysis helped
art therapy to develop in the direction of art-psychotherapy:pro-
moting creativity and self-expression, but also facilitating insight
and change in the patients inner world. Professional art thera-
pists are trained both in the expressive use of art materials and in
the psychotherapeutic process. The main tool of the art therapy
method is a dual-channel communication (patient-therapist and
patient-image) that becomes activated in the triangular art ther-
apy setting (patient-image-therapist):this type of communication
combines a direct and verbal relationship between art therapist
and patient(s), with an indirect and symbolic relationship, through
visual images.
The first two books on the use of art therapy with medically
ill patients were published at the end of the 1980s, in the United
Kingdom and in the United States.1,2 At present, art therapy is
being offered at all stages of the illness:at diagnosis, during treat-
ment, after treatment, and at the end of life, integrating somatic,
psychological, and existential themes.
There are three basic categories of art therapy interventions. The
drop-in open studio approach is suitable for a heterogeneous group
of patients, who may not be able or willing to commit themselves
to regular attendance: they may come and go in the art room,
and may benefit even from a single session; art therapy groups
are structured interventions, usually offered once a week, for an
agreed number of sessions, for a defined group of patients who
share a common objective; individual art therapy is suitable for
any patient who finds verbal expression difficult, who wishes to
use a creative approach, or who needs the privacy of a symbolic
language to deal with confidential issues.
Research into art therapy with cancer patients is recent, and very
little data are the result of evidence-based research. Some articles
are single case studies, others are clinical reports, and the evalua-
tion is generally based on questionnaires filled out by the patients,
or on psychological tests before and after the art therapy interven-
tions.3 On the whole, the literature strongly suggests that cancer
patients do benefit, during or after treatment, in a variety of ways,
especially by attenuating their negative feelings, improving their
way of coping with the cancer experience, and helping psychologi-
cal growth.4 The need to conduct evidence-based research is now
acknowledged in the contemporary art therapy world. 5 This chap-
ter will focus on how art therapy has been used with adult cancer
patients and where it seems worthwhile to conduct more research.
Art Therapy in the Waiting Room
It is not possible to use a traditional frame of psychological work to
provide assistance to oncology patients in a waiting room setting.
Nevertheless, this is a place where patients may feel very anxious
and may need help. Areport on art therapy in an oncology waiting
room, in a hospital in Brazil, was presented at the International
Psycho-Oncology Society (IPOS) Conference 2009 in Vienna.6
Two tables were placed in the center of the waiting room:one with
the art materials, and the other one for the patients who wanted to
sit and do free artwork. According to the participants, the activity
increased their feeling of well-being. Asimilar intervention was
offered more recently, in the waiting room of an oncology day
hospital in Italy.7 Here the art therapist was able to have access to
a small room close to the waiting room:this created a protected
space, and made it possible for some patients to have private time
with the art therapist, when they needed it. Each patient used this
opportunity to fulfill different needs: they either relaxed while
painting images of nature, or expressed symbolically some feel-
ings triggered by the illness, or sometimes used an image as a kind
of meditation on existential themes.
Art Therapy with Hospitalized Patients,
IncludingPatients in Isolation
Pain is a multidimensional phenomenon, and the multidimen-
sional feature of art therapy makes it suitable to deal with it. At
Memorial Sloan-Kettering Cancer Center in New York, the art
therapist offered a small outline of the body on a white page to 70
hospitalized patients, and the majority used it to express a combi-
nation of physical pain and emotions:some gave colors and shape
to the pain, which helped them to distance themselves from it; oth-
ers integrated the pain into a broader meaning of life, adding posi-
tive values and spiritual beliefs.8 Connell collected the patients
drawings, poems, and stories into a Big Book of Memories and
Reflections, which she used to take from room to room: this
interaction created an invisible group, which was nonintrusive,
498 Section X evidence-based interventions
comforting, and stimulating.9 Nainis etal. report on a statistically
significant relief from pain and other physical symptoms, after a
single one-hour art therapy session with adult cancer inpatients.10
Art therapy is able to offer a special contribution to the care of
patients who are in isolation for bone marrow transplantation, and
two studies have been published.11,12 In both cases, the art thera-
pist visited the patients in their room once a week for the entire
time of their hospitalization. The art materials had to be sterilized
and the art therapist adhered to standard rules for reverse pre-
cautions. Some innovative techniques had to be developed. The
sessions were useful to calm down some patients who were anx-
ious and claustrophobic, and helped other patients who were with-
drawn and uncommunicative to reveal their existential concern.
Patients who had young children at home were helped to make
little books for them, with stories, games, and personal memo-
ries:these objects created a new bond in the family, and became
a special legacy in some cases when the patient died before being
discharged. Patients in isolation, although physically very weak,
used the art materials, shared memories, and made images mean-
ingful to them.
Art Therapy During Chemotherapy
andRadiotherapyTreatments
Art therapy has been used effectively with patients during che-
motherapy and radiotherapy treatment, through different types
of interventions, aiming to decrease negative feelings and
to strengthen a positive state of mind. Bar-Sela et al. offered
weekly sessions to patients undergoing chemotherapy, using
water-based painting for the image making, and their study
suggests a decrease in the levels of fatigue and in the feelings of
depression.13 Forzoni14 worked side by side with the individual
patients during the chemotherapy sessions, helping them to make
either a collage or free drawings, and talking with them about
their artwork:for some patients it was an opportunity to forget
about the illness; others moved into self-narrative and felt lis-
tened to; some patients moved deeper into themselves and said
they had discovered new meanings in their life. Vianna etal.15 is always striking for the art therapist to realize that terminal
offered weekly interventions in a hospital in Brazil, open to all the
patients present in the chemotherapy room:the intervention was
based on listening to a story, followed by personal associations
and art making. The majority of the patients reported feeling
supported during this experience, and mentioned new feelings of
energy, courage, and hope.
Oster etal.16 worked with patients during radiotherapy, and this
is one of the few controlled and randomized research studies in
this field. The patients received five sessions of weekly individ-
ual art therapy during postoperative radiotherapy, and they felt
strengthened and better able to cope with the illness, compared
with the control group.
Working With Cancer Patients After Treatment
After cancer treatment, some patients have to deal with traumatic
changes, in their body or in their life situation. Art therapy has
been used as an effective therapeutic adjunct for laryngectomy
patients, whose capacity to speak may be lost, either transiently
or permanently.17 Lusebrink and Scifres18 have conducted brief
art therapy, combined with sand play therapy, for stress reduction
with mastectomy patients:the patients visualize the stressful situ-
ations and their coping style, then relax and explore alternative
ways of coping. Agroup of art therapists in Germany are actively
exploring how art therapy can offer support to patients after care.19
It is not unusual for cancer patients to decide, after they have
completed treatment, to deal with personal issues that need to be
resolved:sometimes old conflicts have been revived by the trauma
of cancer diagnosis or treatment. When the patients are free from
the stress associated with various forms of treatment, they can
concentrate on their own life. Sometimes they feel the need to
grow, emotionally and spiritually.
Post-treatment patients seem to respond well to short-term
group art therapy, lasting 1012 weeks, as they now feel strong
enough to attend the weekly meetings regularly. Some art thera-
pists have created group interventions with a well-structured
methodology and specific art therapy techniques, which could be
replicated by other art therapists, and could be a good basis for
research.2022 Art therapy may be combined effectively with cre-
ative writing and narrative therapy for personal growth.23 Monti
and Peterson have integrated art therapy and meditation into an
eight-week structured program (mindfulness-based art therapy)
for women with cancer, and have conducted a randomized con-
trolled trial, which showed a statistically significant decrease in
symptoms of distress and improvement in quality of life.24 The use
of arts therapies in conjunction with silence, focusing, meditation,
and a general mindfulness approach is the theme of a recent book
edited by Laury Rappaport:the volume contains contributions by
a number of leading contemporary art therapists, who are com-
mitted to combining art therapy and spirituality; some of them
have worked or are working with cancer patients.25
Art Therapy at the End of Life
Some patients need the courage to live, and others need the cour-
age to die. Art therapy offers a unique way of dealing with death.26
Images about death may emerge freely during a drop-in open ses-
sion, an art therapy group, or at the patients bedside. They may
be images from dreams, or about the death of loved friends and
relatives, or they may be symbolic images of ones mortality. It
patients often wish to communicate and explore the experience
of approaching death through symbolic imagery, and when they
can do it, they feel a sense of relief.27 As hospices rapidly become
part of our culture, the use of art therapy in hospice care is quite
relevant, because of its unique combination of being very private
and facilitating in-depth experiences. Art therapists are develop-
ing new approaches and interventions about how to provide art
therapy in hospices. Natural scenes and landscapes seem to be an
endless source of comforting feelings, memories, and reflections,
whether they are painted by the patients,28 or just looked at, in a
comfortable state of joint attention between the art therapist and
the patient, at the patients bedside.29
Conclusion:Art Therapy Service in Cancer Centers
There is now clear evidence that a psycho-oncology service
in a cancer center is greatly enriched by having an active clini-
cal art therapist in the multidisciplinary team. In fact, through
a professional use of images and imagination, and through the
dual-channel communication activated in the art therapy setting,
the art therapist may prove able to fill a critical gap, by respond-
ing to the needs of patients in distress who cannot or do not want
to use verbal communication as their main therapeutic medium.

Drop-in open studios, art therapy groups, and individual art
therapy may be helpful to different patients, or to the same patient
at different stages of the illness; art therapy should never be identi-
fied with one single type of intervention.
Some evidence-based research and many clinical reports sug-
gest five specific positive outcomes of art therapy with cancer
patients:(1)calming effect on anxious patients; (2)self-confidence
in depressed patients; (3)learning new coping strategies; (4)new
insight into ones behavior; and (5)increased ability to deal with
existential issues, like loss and death. Art therapists should bet-
ter articulate their interventions and conduct more research into
their use.
MUSIC THERAPY
Introduction
Music therapy is a well established profession that offers treat-
ment approaches found efficacious in addressing a range of needs
and issues presented by patients diagnosed with cancer and their
families.30 In oncology settings, music therapy is recognized as
a non-pharmacologic modality offering soothing and expressive
benefits. Strategies are provided by board certified music thera-
pists to facilitate meaningful changes in physiological, psycho-
social, and spiritual processes. In the following, the use of music
therapy in this context will be summarized, including a review of
methods, common approaches, and specialized areas of practice.
Music therapy has become widely incorporated into health-
care and medical services and is an established profession that
can enhance quality of life. Music therapy is the purposeful use
of music to address physical, emotional, cognitive, social, and
spiritual needs of individuals of all ages.31 It became formalized
in the mid-twentieth century and was originally used for treat-
ing ailing veterans returning from war. The profession expanded
to services in psychiatric and medical institutions, especially as
education became standardized and degree programs were estab-
lished worldwide. Currently, music therapists who have fulfilled
national education and certification requirements are employed
internationally in a wide variety of medical, rehabilitative, psychi-
atric, long-term care, and wellness settings.31
Music therapy in cancer care has been found to provide multiple
benefits.30 Music plays an integral role in human life and takes
on deeper significance during times of transition, loss, and grief.
Music therapists strive to assist patients, families, and staff in inte-
grating the medium of music to ameliorate grief and suffering,
relieve stress, anxiety, depression, and isolation and to improve
overall personal well-being.30,32,33
Over the past three decades in particular, music therapists have
been conducting empirical studies to further explore and docu-
ment the use of music therapy in oncology. Literature describes the
effectiveness of music to promote relaxation,3338 alter mood,37,38
improve communication 39,40 and break the cyclical nature of
pain.41,42 Music therapists employ skilled approaches for treating
anxiety in children4345 and adults.32,35,4648 Music therapists and
healthcare professionals are continuing to research the impact of
music on the various components of the human experience dur-
ing life-threatening illnesses, that is, physiological (improved car-
diac, respiratory, and adrenal functioning, as well as decreased
symptoms of nausea, insomnia, or fatigue), psycho-emotional
(alteration in mood and enhanced coping styles), social (enhanced
Chapter64 art and music therapy 499
communication), and spiritual (improved sense of meaning, con-
nectedness, and faith).30,4850
Methodology
As the needs and issues of patients and families are multifaceted
and complex, music therapists practice thorough assessments and
offer a variety of person-centered strategies.
Assessment
Assessment is ongoing and is done on a moment-by-moment and
session-by-session basis.32 The initial and ongoing assessments
include a review of comprehensive needs, such as disease status,
overall mood, cognitive functioning abilities, prior musical expe-
riences, cultural and spiritual values and preferences, familial/
social issues, coping skills, and the degree of emotional vulner-
ability. 32,51 Ongoing assessment is done through close observa-
tion, gentle questioning, and collaboration with interdisciplinary
teams. The music therapist is trained to be highly sensitive to the
needs presented so as to provide appropriate music and individu-
alized techniques aimed to enhance comfort and sense of control.
When patients are particularly vulnerable and are not capable of
contending with emotional expression, music therapists may offer
gently uplifting music with peaceful, hopeful lyrics. Likewise,
there may be times during sensory overload when music needs
be especially modified or perhaps temporarily omitted. Generally,
appropriate music aimed to improve ability to cope can bring
relief to a wide range of symptoms, as music has the unique poten-
tial to function multidimensionally.
Role of Therapist
Music therapy aims to facilitate well-being and improve quality
of life through music-therapeutic relationships. Thus the thera-
pist relies on the therapeutic benefits of human contact and the
supportive, caring presence of the music therapist. 51 Asignificant
aspect is therefore the role assumed by the therapist in establish-
ing a compassionate, attentive, and creative milieu within which
individuals can experience emotional comfort. 51,52 Music thera-
pists strive to offer an empathetic, accepting, and caring presence
as they listen, observe, and provide individualized approaches
in sessions that enhance self-determination and affirm patients
strengths and life contributions. Within this context, individuals
may regain identity and sense of dignity.
Common Procedures and Techniques
Referrals are generally made by multidisciplinary team members,
and music therapists conduct initial and ongoing assessments,
involving patients, families, and caregivers. Individual and group
sessions range in length of time and are organized depending on
determined needs and location. In hospital settings, sessions are
conducted at bedside or in intensive care units, in perioperative
settings or treatment/procedure areas, such as radiation or che-
motherapy units. Sessions are often characterized by gentle, yet
prompt approaches adapted to personal preferences and prevail-
ing needs. The therapist must maintain the ability to assess and
address predominant issues upon contact. Live music is com-
monly used, with guitar, voice, keyboard, harp, acoustic string
instruments, or hand instruments. Pre-composed songs may be
offered, and patients are invited to select music of their prefer-
ence. The music therapist aims to find simple ways to help patient
and family become engaged, such as through song choice and life
500 Section X evidence-based interventions
review, selecting preferred imagery, singing and playing instru-
ments, or lyric improvisations. Music therapists maintain close
communication with team members and, whenever possible,
work with patients and family members on an ongoing basis to
offer continual supportive care.
Techniques are patient-centered, incorporating interests, per-
sonal desires, and capabilities.
Examples of common techniques used in sessions:
Songs:Song content may be used to express that which is diffi-
cult to express.52 Previously composed songs may be selected by
the patient, family members, or at times by the music therapist
to reflect themes of significance. Songs are known to stimulate
memory and facilitate life review. Therapists offer reflective and
empathetic listening throughout sessions and offer support
along with creative expressive techniques. As lyrics can help
guide thoughts and images, songs can provide form, structure,
and a pertinent frame of reference during times of doubt, fear,
apprehension, or episodic pain. Singing in sessions involves the
intimate presence of the human voice, an element that can help
reduce anxiety and sense of isolation.51 Likewise, singing can
provide various physiological benefits;53
Song writing: The personalization of lyrics in sessions fosters
insight and self-determination. The music therapist commonly
assists patients and families in creating songs with their own
words, often dedicated to their loved ones as gifts, or written
with special messages for others, such as testimonials regarding
their sentiments for life and/or one another;31,40,52
Chants:The use of common chants to verbalize prayers or med-
itations often provides opportunities to substitute lyrics with
personal words. Likewise, chants may support cultural or spiri-
tual themes of significance. Repetition of vocal intonations, as
in toning techniques, with or without words, is a way to focus
attention and can reduce pain or fatigue, increase relaxation,
improve breath, and enhance expression.46,51,53
Music listening:Often patients elect to listen to soft music for
relaxation during sessions. The therapist may provide live har-
monic, melodic instrumental or lyrical music depicting desired
images. This music is often improvised as the mood, rhythm, and
timbre may be adapted spontaneously to meet needs. Therapists
often guide patients into relaxation and offer recorded music for
use after sessions as a means for helping refocus attention dur-
ing episodes of pain, fatigue, agitation, or insomnia.34,35
Music
meditation:Music can be used to create a mood of tran-
quility.53 Patients may select mantras or words that refer to peace
or personal affirmations to enhance comfort. This technique can
redirect thoughts and improve sense of control and relaxation.46
Improvisation by therapist: The therapist improvises music,
finding tempos and melodies that facilitate relaxation, improve
energization, and/or create the mood desired.
Improvisation
with patient:The music therapist offers melodies
and instruments to facilitate creative expression.
Audio recording: Special songs or complete sessions may be
recorded and given by patients to families as gifts. Such audio
recordings are generally designed by the patients and are presented
to loved ones as memoirs and tokens of affection. Patients some-
times use these recordings to refresh states of comfort and pleasure.
Areas of Specialization
Music therapists have been utilizing specialized treatment
approaches in clinical practice. The following current trends
exist: pain management, neurological sciences, integrative
medicine, procedural music therapy, music psychotherapy, and
spirituality.
Pain Management
Music therapists provide strategies to help ameliorate symp-
toms of pain. The music therapist aims to assuage pain by
using music relaxation techniques while attending to the
psycho-spiritual components of the pain experience. 32 The
therapists skill for holistically assessing pain plays a vital role
in treatment. While music can enhance relaxation, alter mood,
and provide cognitive stimulation, the expressive nature of
music can also facilitate relief from suffering. 32 Some music
therapists use techniques, such as entrainment, the use of
sound stimuli to match and then alter responses. 41,55 Other
therapists use physioacoustic therapy, the use of pure sinusoi-
dal sound waves and the use of non-rhythmic slow tempos and
low frequencies.41
Neurological Sciences
In patients with neurological impairments, music therapy can
be helpful in diminishing symptoms of fear, anxiety, agitation,
depression, and loneliness. 39 Research further demonstrates
the implications for the use of music with related diseases, such
as brain tumors, central nervous system (CNS) lymphoma, and
metastatic illness.56 As hearing is the first sense to be developed
and the last sense to deteriorate, 57 music is a particularly effective
stimulus to reach and make contact with patients who are other-
wise not responding to words or touch. Also, therapists use music
for those with communication challenges, such as disease-related
expressive aphasia. Music stimulates the language centers of the
brain and can facilitate expression and articulation. 53 Likewise,
music stimulates memory functioning and is used as a retrieval
mechanism to help patients with memory impairment recall sig-
nificant events.54
Integrative Oncology
As an evidence-based complementary therapy, music therapy
follows the principles of integrative medicine in considering the
mind-body connections and whole person care.34,54 Music thera-
pists work as collaborative members of multidisciplinary teams
and aim to achieve the broader goals of music therapy in oncology,
such as improved personal well-being and quality of life. Clinical
work often includes individual and group sessions during and
after all phases of treatment, aiming to promote wellness, achieve
stress reduction, and improve coping skills, 35 including contend-
ing with grief, loss, and times of transition.46
Procedural Music Therapy
Music therapy is known to benefit patients undergoing proce-
dures, such as radiation therapy, chemotherapy, port catheteriza-
tions, and so on, and to assist in perioperative and intraoperative
settings.41,43,58,59 Music therapists utilize vocal and instrumen-
tal live music that is personalized to aid patients in achieving
enhanced relaxation and emotional comfort. 41 The calming
presence of the therapist often serves to help ameliorate anxiety
and fear.

Music Psychotherapy
Music therapists are applying psychotherapeutic skills in oncology
settings. Analytic music therapy has been found to benefit some
children and adults through the uncovering of issues surround-
ing symptoms, some of which are psychosomatically based. 60
Music therapists often base clinical work in various models of
psychotherapy as they attend to presenting psycho-emotional and
existential issues. Cognitive behavioral techniques are sometimes
used, incorporating lyrics of meaning, for example, to manage
stress. Therapists offer reflective and empathetic listening to sup-
port self-expression and self-actualization.
Spirituality
Patients diagnosed with cancer often seek support with existential
issues, such as sense of meaning. Music therapy offers an inspira-
tional context, as music has innate associations with nature, infin-
ity, and humanity across culture and throughout time.51 Various
strategies acknowledge spiritual values and also facilitate a sense
of hope, connection, transcendence, meaning, and faith.49,54
Legacy projects are often developed to represent ones life journey
and affirm contributions.
Population Considerations
Pediatric oncology: Children are given opportunities in indi-
vidual/group settings to sing, play instruments, participate
in improvisational song-story writing, recording, or listen to
calming music.45 Techniques provide a less threatening means
of expression for withdrawn or agitated children, while also
helping to familiarize and normalize medical environments.
Music therapists are often present during difficult procedures to
offer the distracting and engaging medium of music within the
context of therapeutic support.43,44,61
Adult oncology:Arange of creative strategies to address emergent
psychosocial and existential issues are provided to treat symp-
toms and provide for moments of comfort, respite, meaning,
and intra/interpersonal reflection. Theme-based patient and
caregiver groups are held in hospitals and clinics.
Gerontology/oncology: Patients in the 65+ age group may have
comorbid medical conditions that can compound and exacerbate
symptoms related to cancer. Patients may experience increased
emotional vulnerability, isolation, fatigue, and memory loss. Music
therapy is well known to improve memory, communication,39
sense of meaning,49 and social integration62 in this age category.
Family caregivers: As caregivers often carry burden and need
psycho-emotional support, music therapists engage family mem-
bers, including children, in sessions, provide ongoing support
and teaching simple stress reduction and self-care strategies.46,63
Staff: Literature has documented the benefits of music therapy
for oncology staff.64 Music therapists often offer classes in
stress reduction, self-care, and coping with loss, such as heal-
ing through the voice, movement, drumming, and relaxation
through guided imagery.
Conclusion
Music therapy in the oncology setting can provide patients, fam-
ily members, and staff with benefits that can enhance coping and
improve quality of life. Through interactive and personalized
Chapter64 art and music therapy 501
approaches, music therapy has been found efficacious in (a)helping
to reduce adverse symptoms and restore relaxation and personal
well-being; (b)offering a means for self expression; (c)facilitating
the processing of existential and spiritual issues; and (d)provid-
ing channels for communication and interpersonal connection.
Music therapy embraces the therapeutic benefits of human con-
tact and the compassionate presence of the music therapist. Thus it
can offer a supportive milieu within which patients and caregivers
may potentially find healing.
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 CHAPTER65
Religion/Spirituality and Cancer
A Brief Update of Selected Research
Andrea L.Canada and George Fitchett
INTRODUCTION
In the second edition of Psycho-Oncology, we offered a brief review
of the literature in cancer regarding (1)the relationship between
religion/spirituality (R/S) and a variety of health-related quality of
life (HRQOL) indices; (2)clinical assessment and research mea-
surement of R/S, and (3)R/S interventions designed to enhance
coping.1 In this third edition, we wish to give attention to topics in
psycho-oncology and R/S that have experienced particular atten-
tion in recent years. Space constraints have limited us to four areas
with just a few citations to represent each. These research areas
include (1)international studies of R/S and HRQOL; (2)the role of
R/S in palliative care; (3)negative effects of R/S and HRQOL; and
(4)screening for R/S distress in patients. We end the chapter with
a number of suggestions for future research in R/S and its relation-
ship to HRQOL in patients with cancer.
INTERNATIONAL RESEARCH ON R/S
ANDCANCER
Historically, the majority of research on R/S in patients with can-
cer has been conducted with US-based samples in which nearly
eight in ten (78.4%) adults identify themselves as Christian.2 More
recently and with increasing frequency, however, reports of stud-
ies on R/S and HRQOL in cancer samples are emerging worldwide.
The international studies reported here (Table 65.1) all employed
the Functional Assessment of Chronic Illness Inventory Spiritual
Well-being scale (FACIT-Sp6) to measure R/S. The FACIT-Sp is
the most widely used measure of R/S with cancer populations in
the United States and, having now been translated into multiple
languages, likely globally. Having the FACIT-Sp in such wide use
facilitates comparisons of R/S and HRQOL in domestic and inter-
national contexts. In sum, and despite the diversity of peoples and
religions across the world, the results of these international stud-
ies suggest that the relationships between meaning, peace, and
faith (i.e., spiritual well-being) and HRQOL are generally consis-
tent with reports from the United States.
R/S IN PALLIATIVE CANCER CARE
The past five years have also witnessed an increase in recognition
of the importance of R/S in the oncology end-of-life setting. Data
from 69 patients with advanced cancer were examined for the rela-
tionships between spirituality, religiousness, and religious coping
and HRQOL.7 Of these patients, 84% indicated reliance upon reli-
gious beliefs to cope with the cancer, and 90% of the patients relied
on one or more religious coping strategies. The primary findings
of multivariate analyses suggested that spirituality and religious
coping were associated with better HRQOL (p=.01).
Another study explored the relationship between spiritual
well-being and HRQOL in 50 patients with cancer who were
enrolled in hospice.8 Although measuring HRQOL with only a
single item, they found spiritual well-being, consisting of the three
dimensions of faith/belief, life/self-responsibility, life-satisfaction/
self-actualization, to account for 34.7% (p <.05) of the variance in
HRQOL at the end of life.
Evidence for the importance of R/S at the end of life has also
been provided by Balboni and colleagues.9 These investigators fol-
lowed 339 advanced cancer patients until death and found that
those patients whose R/S needs were inadequately supported by
healthcare personnel were more likely to die in the ICU and less
likely to spend a week or more on hospice care. Furthermore, the
medical costs of this end-of-life care were significantly greater
in those patients who experienced a lack of R/S support ($4947
vs. $2833, p=.03), especially for high religious copers ($6344 vs.
$2431, p=.005) and minorities ($6533 vs. $2276, p=.02).
NEGATIVE EFFECTS OF R/S
As we mentioned in the earlier version of this chapter (in the sec-
ond edition of the text), some aspects of R/S are associated with
worse outcomes in patients with cancer. Since then, there have
been additional reports of harmful associations with R/S struggle
(i.e., negative religious coping). Abrief sampling of these studies
is reported in Table 65.2.
In 2010, we also briefly mentioned evidence from several large
studies reporting that higher levels of R/S involvement were asso-
ciated with more use of cancer screening. We have re-examined
the literature about R/S and cancer-related health behaviors and
have found some studies that confirm the findings previously
reported. For example, among 321 low income African American
women, greater religious involvement predicted greater mam-
mography adherence (OR 1.12, p=.002).13
Table65.1 Recent International Studies Using the FACIT-Sp

Authors (Year) Country (Language) Predominant Religion Sample; Diagnoses HRQOL Measure(s) Analyses:Findings
Whitford and Olver Australia Secular 999 on treatment; FACT-G; one item, Correlation:Meaning was associated
(2012)3 (English) (Christian, most reported breast, urological, I am content with with greater PWB, SocWB, EWB,
religion of minimal or no lung, lower GI, head the quality of my life and FWB; Peace was associated with
importance) and neck, other rightnow. greater SocWB, EWB, and FWB; Faith
was associated with greater SocWB
and FWB and worse EWB; Total SpWB
was associated with better SocWB
and FWB and poorer EWB.
Regression:Meaning and Peace
predicted contentment with HRQoL.
Jafari etal. (2013)4 Iran Islam 153 on treatment; FACT-G; one item, Correlation:Meaning and Peace were
(Farsi) breast, lung, Iam content with associated with greater PWB, SocWB,
hematologic, the quality of my life EWB, and FWB; Faith was associated
gynecologic, colon, right now. with better SocWB, EWB, and FWB
other Regression:Peace, Meaning, and Faith
predicted contentment with HRQoL.
Lazenby etal. (2013)5 Jordan Islam 205 on treatment; FACT-G; one item, Correlation:Meaning was associated
(Arabic) breast, colorectal, Iam content with with better SocWB and FWB; Peace
lung, lymphoma, the quality of my life was associated with greater SocWB
gynecologic, other right now. and FWB and with worse PWB and
EWB; Faith was associated with better
SocWB and FWB and worse EWB;
Total SpWB was associated with
greater SocWB and FWB and with
worse EWB.
Regression:Total SpWB predicted
HRQoL; Meaning and Peace predicted
contentment with HRQoL.

Note. Measures:FACT-G, Functional Assessment of Chronic Illness-General. Outcomes:HRQoL, health-related quality of life; PWB, physical well-being; SocWB, social well-being; EWB,
Emotional Well-being; FWB, Functional Well-being; SpWB, spiritual well-being.

Table65.2 Recent Religious/Spiritual Struggle Reports

Author(s) Sample; Study Type Struggle Measure HRQOL Analyses:Findings

(Year) Diagnoses Measure(s)
Hebert etal. 284 on Longitudinal (at RCOPE (Negative SF-36, CES-D, Correlation:Negative Religious Coping was associated with poorer mental
(2009)10 treatment; baseline and at Religious Coping SWLS health, greater depression, and lower life satisfaction at baseline.
breast 812 mos) anger toward and Regression:Negative Religious Coping predicted poorer mental health,
abandonment by greater depression, and lower life satisfaction at follow-up; also, increased
God) Negative Religious Coping over time predicted poorer mental health, greater
depression, and lower life satisfaction.
Sherman 94 on BMT; Longitudinal Brief RCOPE FACT-BMT, Correlation:Negative Religious Coping at baseline was associated with
etal. (2009)11 myeloma (at baseline and (Negative Religious BSI greater anxiety and depression and poorer PWB, EWB, and FWB at baseline.
post-transplant) Coping Scale) Regression:Negative Religious Coping at baseline predicted worse
post-transplant anxiety, depression, EWB, and transplant-related concerns;
also, increased Negative Religious Coping over time predicted greater
depression and poorer PWB, EWB, and FWB.
Thune-Boyle 155 newly Cross-sectional RCOPE (Negative HADS Univariate:Negative Religious Coping, specifically feeling punished and
etal. (2013)12 diagnosed Religious Coping abandoned by God, was associated with higher levels of anxiety and
post- feeling punished depression.
surgery; or abandoned by Multivariate:Negative Religious Coping, specifically feeling punished and
breast God) abandoned by God, predicted higher depression but not anxiety in fully
adjusted models.

Note. Measures:RCOPE, Religious Coping Scale; SF-36, Short Form-36; CES-D, Center for Epidemiological Studies-Depression; SWLS, Satisfaction with Life Scale; FACT-BMT, Functional
Assessment of Cancer Therapy-Bone Marrow Transplant; BSI, Brief Symptom Inventory; HADS, Hospital Anxiety and Depression Scale. Outcomes:HRQOL, health-related quality of life;
SpWB, spiritual well-being; PWB, physical well-being; SocWB, social well-being; EWB, Emotional Well-being; FWB, Functional Well-being.

However, divergent evidence has also been reported. For exam-
ple, among 42 African American women at high risk for breast
cancer, each 1 point increase in God Locus of Health Control
was associated with a 12% decrease in likelihood of adherence
to recommended clinical breast exam or mammogram (OR 0.88,
p = 0.05).14 A study of 129 African American women who had
detected symptoms of breast cancer found that women who did
not confide their symptoms to family or friends but only told
God about them (28% of the sample) had a greater likelihood of a
delay in seeking treatment of three months or more.15 Among 540
women with breast cancer, those who endorsed the statement If a
person prays about cancer, God will heal it without medical treat-
ments were nearly twice as likely to present with advanced stage
of disease (OR 1.9; 95% CI:1.13.2).16 This belief was 4.5 times as
likely to be endorsed by African Americans compared to whites.
Park and colleagues17 examined whether affect mediates
the relationship between religious/spiritual beliefs and health
behavior. In the study of 167 younger adult cancer survivors,
more frequent daily spiritual experiences (e.g., feeling closer to
God) were associated with better health behavior (e.g., greater
likelihood to follow their physicians advice), an association that
was mediated by self-assurance. In contrast, higher reports of
religious struggle (e.g., feeling abandoned or punished by God)
were associated with poorer health behavior, an association that
was mediated by guilt.
Finally, two investigations have reported an interaction
between Meaning/Peace and Faith, as measured by the FACIT-Sp
with HRQOL. Yanez and colleagues18 found in a mixed sample of
patients with cancer that when Meaning/Peace was relatively low
at baseline, high Faith predicted an increase in depressive symp-
toms at six-month follow-up. Similarly, Zavala et al.19 reported
that men with metastatic prostate cancer who had high Faith and
low Meaning/Peace reported the worst physical functioning and
the most pain. In both samples, higher levels of Meaning/Peace as
well as Faith were associated with better HRQOL. Such findings
suggest that high Faith scores may be detrimental to HRQOL in
the absence of high scores on the Meaning/Peace subscale.
As can be seen from this brief overview, there is evidence that
R/S may influence cancer-related health behavior in both posi-
tive and negative ways. This is an area where additional research
is needed to clarify the seeming inconsistencies in the evidence
and to examine the mechanisms that may be involved in any
associations.
SCREENING FOR SPIRITUAL DISTRESS
This evidence about harmful effects of R/S discussed above,
as well as evidence of negative effects of unmet spiritual needs,
points to the importance of screening cancer patients for R/S
distress and possibly for R/S beliefs that may compromise adher-
ence to guidelines and treatment. The need for such screening is
also underscored by the new guidelines for psychosocial distress
screening set by the American College of Surgeons Commission
on Cancer.20
Some screening tools for R/S distress are available. In the pre-
vious edition of this chapter, we described the Rush Religious
Screening Protocol, which screens for the presence of religious
struggle. Since then, the Rush protocol was implemented with
178 patients admitted for blood and marrow transplant by King
Chapter65 religion/spirituality and cancer 505
etal.21 Eighteen percent of these patients were identified as poten-
tially experiencing religious struggle.
Mako and colleagues22 developed another screening tool for
spiritual pain in the cancer palliative care setting. Chaplains
interviewed 57 patients with advanced stage cancer. Spiritual
pain was described as a pain deep in your being that is not
physical. Chaplains then asked patients a series of three related
questions:(1)What is spiritual pain to you? (2)Are you expe-
riencing spiritual pain now? and (3) How would you rate the
intensity of your spiritual pain? on an 11-point scale ranging
from 0 (no pain) to 10 (excruciating). Findings indicated
that 96% of the patients were experiencing spiritual pain, and
this pain was expressed in three different ways:(1)intrapsychic
conflict, (2) interpersonal conflict, or (3) conflict in relation to
the Divine. The intensity of spiritual pain was highly correlated
with depression (p <.001). Delgado-Guay et al. 23 found that
spiritual pain assessed in the same manner was associated with
poorer self-reported physical/emotional symptoms and a trend
toward increased depression, anxiety, anorexia, and drowsiness in
advanced cancer patients.
In the development of a well-validated, comprehensive yet brief
screener, Wells-Di Gregorio et al. 24 identified spiritual prob-
lems as one of six factors of patient distress in the cancer setting.
Spiritual problems were identified as concerns about a relation-
ship with a higher being, concerns about personal spiritual prac-
tices, and concerns about meaning/purpose of life. The spiritual
concern factor was found to be highly correlated with depression,
anxiety, and a measure of overall distress (ps <.001).
Additional research is needed to identify the best methods
for screening for the diverse ways in which spiritual pain may
be experienced in the cancer setting. Also, what should be done
when screening indicates the need for spiritual care? Sinclair and
Chochinov, 25 a research team in oncology spiritual care, suggest
that chaplaincy is not as widely available (in Canada) or as well
integrated (in the US) as practice guidelines and research suggest
should be the case.
FUTURE RESEARCH
The growing literature on R/S in cancer notwithstanding, there
are important areas for future research. In addition to the previ-
ously mentioned areas (e.g., understanding the positive and nega-
tive effects of R/S on HRQOL and exploring possible mechanisms
for such associations, identifying and addressing spiritual pain),
there is need for additional research on measurement issues.
As seen in this review, a notable portion of the research about
R/S and cancer has employed the FACIT-Sp to measure R/S. The
brevity of its 12 items and the argument that it measures a univer-
sal or generic spirituality without the use of religious language has
contributed to its widespread use. Despite its popularity, a number
of issues about the FACIT-Sp must be considered, including what
it measures, how it has been used in cancer-related research, and
the interpretation of the findings associated with it. Critics of the
FACIT-Sp suggest that the items measure emotional well-being
or HRQOL26 and that it is a measure of spirituality whose items
could just as easily be found on secular measures of life satisfac-
tion, happiness, and well-being (p.31). 27 This debate about the
FACIT-Sp in part reflects the ongoing debate about definitions of
religion and spirituality. Regardless, investigators should become
506 Section X evidence-based interventions

familiar with the literature about definitions and measurement
of R/S before assuming that because of its widespread use, the
FACIT-Sp is the best measure for their project.
Another problem has arisen in interpreting differences in asso-
ciations between HRQOL and the FACIT-Sp subscales. A com-
mon finding among studies that simultaneously test both factors
in the two-factor model of the FACIT-Sp is that Meaning/Peace
has a stronger association with HRQOL than Faith. Investigators
frequently interpret this as evidence for the general superior-
ity of Meaning/Peace over Faith for cancer survivors HRQOL
and adjustment (e.g.,18, p.736). Several researchers have tested a
mediation model and have found evidence that Meaning/Peace
partially mediated the relationship between Faith and HRQOL
(e.g., 28). However, these investigators have misinterpreted their
findings. For example, Edmonson and colleagues28 described the
association between Faith and HRQOL as fully accounted for
by the mediator Meaning/Peace (p.165). This interpretation has
led these and other investigators18 to conclude that only Meaning
contributes to HRQOL. The correct interpretation of this evidence
is that Faith also contributes to HRQOL, both directly and indi-
rectly (mediated) through Meaning/Peace.
Recently, several studies have found support for a three-factor
model in which Meaning and Peace formed separate cognitive and
affective subdimensions of spirituality, respectively.29,30 Peterman
et al.31 re-examined data from four studies, including the data
used in the original psychometric study of the FACIT-Sp, and
found that across all of the studies there was better model fit when
Meaning and Peace were treated as two separate factors rather
than one. In multiple tests of the incremental validity of Meaning
and Peace with multiple, mostly psychological, outcomes, they
found that Meaning contributed relatively little unique variance
above that contributed by Peace. As the authors note, these find-
ings lend support to the view that, at the least, the Peace subscale
of FACIT-Sp is essentially a measure of emotional well-being. Due
to the confounding of Peace and emotional well-being, FACIT-Sp
findings about emotional well-being and HRQOL should be inter-
preted with caution until a body of evidence from studies using
other R/S measures has developed.
Given the limitations just described, future research with the
FACIT-Sp may best be limited to its original intent, a dependent
variable that might be affected by the cancer experience rather
than a predictor of HRQOL,6 and even then to bear in mind the
questions that have been raised about the underlying conception
of spirituality reflected in the measure. Future research will ben-
efit from a move beyond broad measures of generic spirituality,
such as the FACIT-Sp, to examine the role of more specific dimen-
sions of R/S to coping with cancer. Table 65.3 contains a sampling
of recently developed measures.
Another area ripe for research is effect modification of the rela-
tionship between R/S and HRQOL by other variables. We have
reported differences in R/S by race, with higher levels of spiritual
well-being in blacks and Hispanics than whites.35 Wildes etal.36
found Latina breast cancer survivors scored higher on a mea-
sure of R/S than even members of a religious order (e.g., rabbis,
priests). However, the question remains if these differences in
R/S are associated with differences in HRQOL and/or to health
disparities. In addition to race/ethnicity, studies involving other
subgroups for whom the relationships between R/S and HRQOL
may differ are needed.
The literature on R/S and HRQOL in cancer would also be
strengthened by more longitudinal studies. Visser and col-
leagues37 reviewed three longitudinal studies about R/S and

Table65.3 Other Measures of R/S

Name; Author (Year) Constructs Number of Items; Original Sample
Psychometric Properties
Perspectives of Support Assessment of the support derived through a dynamic, communicative exchange 15 items; factor African American
from God Scale; Hamilton between an individual and God and as well as the support that comes from God 1)Cronbachs =.94; cancer survivors in
etal. (2010)32 during struggles with cancer. Two factors:(1)Support From Godreflects the factor 2)=.86; adequate southeastern US
perspective of a direct connectedness to God (i.e., belief that one has a personal construct validity
relationship with God, is drawn to God through the illness, and takes comfort in
knowing that God is in control); (2)Gods Purpose for Mereflects strategies used
to cope with the earthly realities of illness (i.e., how God is working through the
illness to build character within the self).
Views of Suffering Scale; Assesses a range of the most common belief systems about suffering in the 30 items; all factors College students
Hale-Smith etal. (2012)33 US, including theistic, Buddhist, Atheist, Hindu, and unorthodox theistic. Ten Cronbachs range .70
factors:(1)Unorthodox (unorthodox theistic views); (2)Random (beliefs about to .89
suffering as being random or purposeless); (3)Retribution (beliefs related to
suffering as retribution or karma); (4)Limited Knowledge (Open Theistic views
reflecting Gods limited foreknowledge); (5)Suffering God (beliefs about God
suffering with people); (6)Overcoming (beliefs about overcoming suffering through
prayer and/or faith); (7)Providence (beliefs about Gods control over suffering);
(8)Soul-Building (beliefs about suffering as a divinely intended personal growth
experience); (9)Encounter (beliefs about suffering as a divine encounter); and (10)
Divine Responsibility (Free Will perspectives).
Positive and Negative Assessment of negative and positive aspects of religious faith in coping with 10 Items; factor 1) Cancer patients
Psychosocial Impact of cancer. Two factors:(1)Positive Impact of Illness (PII)Faith; and (2)Negative Cronbachs =.96; factor from North
IllnessFaith; Salsman Impact of Illness (NII)Faith 2)Cronbachs =.77 Carolina
etal. (2012)34 adequate construct validity

HRQOL and reported mixed results. Several longitudinal stud-
ies are referenced in Table 65.1, but further research is needed on
whether R/S changes or remains constant across the cancer trajec-
tory. Then, if R/S does in fact change, are there ensuing implica-
tions for HRQOL outcomes?
Finally, further research is needed on R/S interventions in
the cancer setting. In the previous edition of this chapter, we
mentioned a few. However, a recent critical review of the lit-
erature determined that better quality intervention studies are
needed. 38
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 CHAPTER66
Integrative Oncology
Alejandro Chaoul, Gabriel Lopez, Richard Tsong Lee,
M. Kay Garcia, Moshe Frenkel, and Lorenzo Cohen
INTRODUCTION
Integrative oncology is an expanding field helping to control
symptoms, clinical outcomes, and all aspects of quality of life
(QOL), built on a rigorous evidence-based foundation through
research, clinic care, and education. The psychosocial compo-
nents of care are of prime importance within an integrative oncol-
ogy consultation. Although applying the concept of integrative
medicine to cancer care is still in its formative years, a number
of comprehensive cancer centers in the United States are putting
this concept into practice under the term integrative oncology.
This chapter reviews the role of integrative oncology in can-
cer care, with an emphasis on a comprehensive approach, the
importance of effective patient-clinician communication, some
of the principal modalities of integrative oncology, as well as
educational resources to guide healthcare providers and patients
to create an integrative plan for people going through a cancer
experience.
A More Comprehensive Approach/System of Care
Complementary and alternative medicine (CAM) approaches have
gained increasing acceptance within conventional medicine. With
an increasing number of CAM modalities, patients are in need of
guidance as to how to navigate the available information to make
informed decisions. Developing an integrative care plan requires
a thoughtful, evidence-based, and safe approach to including
non-conventional CAM therapies with conventional disease- or
symptom control-directed therapies. An integrative approach
provides patients, from diagnosis through survivorship, with a
comprehensive system of care. The majority of cancer patients
are either using complementary medicines or want to know
more about them,1 so it is incumbent on the conventional medi-
cal system to provide appropriate education and evidence-based
clinical services. The clinical model for integrative care requires a
patient-centered approach, with attention to patient concerns and
enhanced communication skills. In addition, it is essential that
conventional and non-conventional practitioners work together
in developing a comprehensive, integrative care plan. In this way,
cancer patients will receive the best medical care, making use of
all appropriate treatment modalities in a safe manner to achieve
optimal clinical outcomes.
DEFINITIONS:ALTERNATIVE,
COMPLEMENTARY, INTEGRATIVE
The US National Center for Complementary and Alternative
Medicine (NCCAM) defines CAM as a group of diverse medical
and healthcare systems, practices, and products that are not nor-
mally considered to be part of conventional medicine.2 NCCAM
has recently reclassified CAM therapies into three broad catego-
ries:natural products, mind and body medicine, and other com-
plementary medicine practices, which are approaches that do not
fit neatly in either of the other two categories (see Table 66.1).
It is important to recognize the distinction between alternative,
complementary, and integrative medicine.3 Alternative medicine
is the use of a non-conventional modality for which there is no
scientific evidence of efficacy in place of conventional medicine.
Complementary medicine is an approach combining conven-
tional treatment with CAM or non-conventional therapies for
which there may or may not exist scientific evidence of safety and
effectiveness. Integrative medicine, as defined by the Consortium
of Academic Health Centers for Integrative Medicine, is the prac-
tice of medicine that reaffirms the importance of the relationship
between practitioner and patient, focuses on the whole person, is
informed by evidence, and makes use of all appropriate therapeu-
tic approaches, healthcare professionals and disciplines to achieve
optimal health and healing.4
Prevalence
CAM use is common worldwide, with increasing availability to
the general population as well as cancer patients in the United
States. The World Health Organization (WHO) estimates that up
to 80% of people in developing countries rely on non-conventional
traditional medicines for primary healthcare. 5 People in more
developed countries also seek out these medicines and practices,
assuming that they are effective and may be safer than allo-
pathic medicine because they are natural. A1997 survey of US
adults found CAM use (excluding self-prayer) varied from 32% to
54%. A2002 survey by the US Centers for Disease Control and
Prevention found that 36% of adults had used CAM therapies
(62% when prayer was included) during the past 12months.6
Individuals with cancer have higher rates of CAM use than the
general population. An estimated 48%69% of US patients with
510 Section X evidence-based interventions
Table66.1 National Institutes of HealthNational Center for
Complementary and Alternative Medicine
CAM Categories Examples
Natural Products Dietary Supplements
Herbal medicines (botanicals)
Vitamins
Minerals
Probiotics
Mind and Body Practices Meditation
(includes the former categories Yoga
of Manipulative & Body-Based
Qi gong
Practices, and Energy
Therapies) Tai chi
Relaxation Techniques
Breathing exercises
Guided imagery
Progressive muscle relaxation
Hypnotherapy
Energy Therapies
Healing touch
Reiki
Magnet therapy
Acupuncture
Massage Therapy
Spinal manipulation
Chiropractic
Osteopathic
Physical therapy
Movement therapies
Feldenkrais
Pilates
Alexander technique
Other Complementary Health Whole medical systems
Approaches Traditional healers
Ayurvedic medicine
Traditional Chinese medicine
Homeopathy
Naturopathy
cancer use CAM therapies,7,8 and the percentage increases if spiri-
tual practices are included.8 Complementary therapies are used
in 70% of all oncology departments engaged in palliative care in
Britain.9 Asurvey of five clinics within a US comprehensive cancer
care center found that CAM therapies (excluding psychotherapy
and spiritual practices) were used by 68.7% of patients.8 Alater
survey in the breast and gynecologic clinics within the same can-
cer center found that CAM therapies, defined as herbs, supple-
ments, and megadoses of vitamins, were used by 48% of patients.7
Most estimates are that at least 50% of cancer patients utilize
CAM at some point during their treatment into survivorship.
In the general population, individuals who use CAM are not
disappointed or dissatisfied with conventional medicine.10 Cancer
patients and survivors report using CAM because they seek to
reduce side effects such as organ toxicity, to improve quality of life,
to protect and stimulate immunity, or to prevent further cancers
or recurrences.7,11,12 Whether or not patients living with cancer
use CAM therapies to treat cancer or its effects, they may also use
them to treat other chronic conditions such as arthritis, heart dis-
ease, diabetes, and chronic pain.
Communicating About CAM
With adequate precautions, most CAM approaches such as medi-
tation, yoga, acupuncture, massage, and music therapy can be
safely used during treatment and throughout survivorship. Herbs
and supplements, however, may need more caution; considering
them as more similar to prescription drugs, they have the poten-
tial to cause direct harm or adversely impact conventional treat-
ment outcomes, either decreasing treatment efficacy by speeding
up drug metabolism or possibly increasing toxicity by enhancing
bioavailability of the drugs. On the other hand, some herbs and
supplements may be beneficial, and appropriate medical guid-
ance is needed. There is where effective communication becomes
critical.
Communicating with patients about CAM use can be a chal-
lenge to healthcare professionals. It is, therefore, necessary for
patients and healthcare professionals to openly discuss all treat-
ments being used, both conventional and non-conventional.
Unfortunately, 20%77% of cancer patients who utilize CAM do
not disclose their CAM use.8,7,13
Research indicates that neither adult nor pediatric cancer
patients receive sufficient information or discuss CAM therapies
with physicians, pharmacists, nurses, or CAM practitioners.14
Patients may become frustrated if they cannot discuss CAM with
their healthcare team. This communication gap can adversely
affect the patientclinician interaction.13 There are a variety of
reasons that open communication about complementary treat-
ments is not taking place in oncology clinics. Cancer clinicians
typically have limited knowledge of this new area and have lim-
ited time to re-educate themselves, and as such they may be reluc-
tant to raise the topic. Particularly when physicians are faced with
a question regarding an unfamiliar complementary therapy, they
may feel de-skilled by being forced outside their zone of comfort
and competence. This discomfort can lead to defensiveness and a
breakdown in communication with the patient.15
Most clinicians do not discuss the topic of CAM unless asked
by the patient; thus, patients may believe that it is unimportant.
This lack of discussion is of grave concern because biologically
based therapies (such as herbs) may interact with cancer treat-
ments. Patients are commonly unaware of differences between
the US Food and Drug Administration (FDA) approval process
for medications and the limited extent of regulation for dietary
supplements under the Dietary Supplement Health and Education
Act (DSHEA) of 1994.16 Supplements under this legislation are
exempt from the same scrutiny the FDA imposes on medications;
these supplements are not intended to treat, prevent, or cure dis-
eases and should be labeled with this statement.
The common belief by patients that natural means safe needs
to be addressed with education. Some herbs and supplements
have been associated with drug interactions,17 increased cancer
risk,18 and organ toxicity.19 Existing research suggests that the
majority of cancer patients desire communication with their doc-
tors about CAM.1 If the issue of CAM arises, clinicians need to
develop an empathic communication strategy. 20 The strategy

Table66.2 Recommended Websites for Evidence-Based Resources
Organization/Website Address/URL
(alphabetical order)
American Cancer Society www.cancer.org/treatment/
treatmentsandsideeffects/
complementaryandalternativemedicine/
index
Cochrane Review Organization www.cochrane.org
Memorial Sloan-Kettering Cancer www.mskcc.org/aboutherbs
Center Integrative Medicine
Service
National Center for nccam.nih.gov
Complementary and Alternative
Medicine (NCCAM)
Natural Medicines www.naturaldatabase.com
Comprehensive Database
Natural Standard www.naturalstandard.com
NCI Office of Cancer www.cancer.gov/cam
Complementary and Alternative
Medicine (OCCAM)
University of Texas MD Anderson mdanderson.org/Integrativemedcenter
Cancer Center Integrative
Medicine Program
should balance clinical objectivity and the creation of a therapeu-
tic alliance. Patients need reliable information on CAM from reli-
able resources with adequate time to discuss this information with
their oncologists (see Table 66.2).
The erosion in trust due to lack of communication can lead
to decreased compliance with conventional medicine and poor
choices with regard to the integration of CAM therapies. Poor
communication also may lead to a diminution of patient auton-
omy and sense of control over his or her treatment.13
Arguing with the patient that they should not try an unproven
therapy which they are convinced will be helpful is not very pro-
ductive; it is likely to damage the therapeutic relationship and
drive the communication process underground. While scientific
and evidence-based thinking is fundamental to medical practice,
failure to recognize that patients often do not reason in this way
interferes with the physicians ability to address the unspoken
needs of the patient with cancer. Psychological, social, and spiri-
tual dimensions of care may be ignored if the physician cannot
adapt to the individual needs of the patient.
CAM Modalities
Natural Products
Many natural products are understood to be safe for patient use,
and some physicians may be comfortable with the preponderance of
evidence for them in terms of quality of life or even disease-related
outcomes. Natural products include a variety of substances such
as herbs, vitamins, minerals, probiotics, and extracts. Biologically
based CAM therapies such as natural products may also have the
potential to cause harm. Issues to consider when discussing natural
products include quality control, metabolic interactions, treatment
interactions, organ toxicity, and cancer growth. Therefore, there
is also great interest in investigating how these substances can
Chapter66 integrative oncology 511
be used safely along with conventional treatment approaches to
improve cancer treatment outcomes. For example, St. Johns Wort
has been found to be effective for moderate mood regulation,21 but
it and herbal teas such as chamomile or peppermint may interfere
with liver metabolism of Sunitinib, Sorafenib, and Everolimus;22
ginger has been found to be effective for nausea in pregnancy, but
not after surgery, and ongoing research is examining the benefits
for chemotherapy-induced nausea;23 and valerian has been shown
to be safe to use as a sleep aid, although the evidence demonstrat-
ing its efficacy is mixed,24,25 and it may interfere with liver metabo-
lism and even lead to liver toxicity.26
On the basis of safety and anticancer effects observed in cel-
lular and animal studies, additional herbs, mushrooms, and their
extracts are now in the process of human trials.
Although there is ongoing research in many other CAM areas,
such as healing touch, homeopathy, natural products, and special
diets, there is insufficient evidence to recommend these at this time.
The SIO Integrative Oncology Practice Guidelines state that ...until
there is evidence for the safety and efficacy of the substance, they
should not be used as alternatives to mainstream care.27
Mind-Body Practices
The belief that what we think and feel can influence our health and
healing dates back thousands of years.28 The importance of the role
of the mind, emotions, and behaviors in health and well-being is
central to traditional Chinese, Tibetan, and Ayurvedic medicine
and other medical traditions of the world. Many cancer patients
believe that stress plays a role in the etiology and progression of
their disease. Although the role of stress in the etiology of cancer
remains controversial, there is substantial evidence showing the
negative health consequences of sustained stress on health and
well-being through profound psychological, behavioral, and phys-
iological effects.29,30 There is also evidence to suggest that chronic
stress has a role in the progression of disease31 and that it may
contribute to overall mortality.32 There are a number of reasons
that it is important for cancer patients to manage stress in their
lives, not the least of which is to help improve quality of life. In
addition, there is emerging research in a number of cancer popu-
lations showing that depression, independent of disease severity,
is associated with increased mortality. 33
There are a number of ways to help address stress in cancer
patients. In the new NCCAM classification, mind and body thera-
pies include the following:
Mind-body practices such as relaxation, yoga, meditation,
tai chi, qi gong, hypnosis, guided imagery, biofeedback,
cognitive-behavioral therapies, group support, and spirituality;
Expressive arts therapies such as art, music, or dance;
Body manipulation practices such as massage and acupunc-
ture; and
Energy medicine such as Reiki and healing touch therapies.
A meta-analysis of 116 studies found that mind-body therapies
could reduce anxiety, depression, and mood disturbance in can-
cer patients, and assist their coping skills.34 Ernst etal. examined
changes in the state of the evidence for mind-body therapies for
various medical conditions between 2000 and 2005 and found
that, over that period, maximal evidence had appeared for the use
of relaxation techniques for anxiety, hypertension, insomnia, and
nausea due to chemotherapy.35
512 Section X evidence-based interventions
Mind-body practices have an excellent safety profile, with some
practices requiring more physical activity than others. There is also
evidence that practices like yoga, meditation, and other psycho-
social interventions to manage stress can decrease inflammation,
lead to better stress hormone regulation, and improve immune
function.28,29 Research examining yoga, tai chi, and meditation
incorporated into cancer care suggests that these mind-body
practices help improve quality of life through improved mood,
sleep quality, physical functioning, and overall well-being.36,37,38
Mind-body practitioners with experience in cancer patient popu-
lations can provide guidance to help patients engage safely in prac-
tices such as meditation, yoga, and tai chi. Mind-body approaches
should be considered, as well as more conventional therapies such
as psychotherapy, cognitive behavioral therapy, and psychotro-
pic medications. More information on conventional psychosocial
approaches can be found in Chapter53.
Music Therapy
Music therapy is a mind-body practice that uses music (music mak-
ing, songwriting, singing, listening) in a prescriptive manner for
non-musical goals, including improving quality of life.39 Trained
music therapists choose a music approach most appropriate to help
patients achieve a desired result. Evidence suggests that music ther-
apy can help with management of mood disturbances, including
anxiety.40 Amore recent review states, available evidence suggests
that music-based interventions may have a positive impact on pain,
anxiety, mood disturbance, and quality of life in cancer patients,41
adding that advances in neurobiology may provide insight into the
potential mechanisms by which music impacts these outcomes.41
An integrative medicine practitioner can help identify those patients
most likely to benefit from consultation with a music therapist.
Massage
Physical touch and massage are therapies that have been used for
thousands of years. Massage is used for relaxation, to help man-
age pain and discomfort, and as a physiotherapeutic intervention.
There are various forms of massage; all typically apply some degree
of pressure to muscle and connective tissue, and some work with
specific pressure points.
As a manipulative touch-based therapy, massage can benefit
cancer patients when it is performed by individuals who have an
awareness of the patients special needs.42 A massage therapist
with special training in oncology massage is the best equipped to
safely deliver the massage. Risk of bruising, bleeding, or injury
can be minimized by careful application of pressure, avoiding
massage into the deep tissue or bone in selected patients. Areas
that have recently had surgery or radiation should be avoided.
Research to date suggests that massage is helpful at relieving
pain, anxiety, fatigue, and distress, and increasing relaxation.43
Benefit on mood and pain relief is limited to the more immedi-
ate effect of massage, with no current studies demonstrating
long-term relief.44 Massage provided by caregivers may offer a
unique opportunity for interaction between patient and caregiver
that can help enhance the well-being of both.45
Acupuncture
According to the World Health Organization, acupuncture is used
in at least 78 countries around the world.46 The most common
form of acupuncture involves the insertion of small needles into
the skin at specific points on the body. For some patients, acu-
pressure may be used, which involves applying heat or pressure
to acupoints instead of puncturing the skin. When performed
correctly, acupuncture is a safe, minimally invasive procedure
with few side effects.9,47 The underlying biological mechanisms of
acupuncture are not well understood, but are believed to include
enhanced conduction of bioelectromagnetic signals, activation of
opioid systems, and activation of the autonomic and central ner-
vous systems, causing the release of various neurotransmitters
and neurohormones.46 Based on the theory of traditional Chinese
medicine, acupuncture is said to help regulate the flow of qi (vital
energy) throughout the body.46
Many cancer patients use acupuncture to help with symp-
tom management, and in 1997, the NIH published a con-
sensus statement supporting its use for postoperative and
chemotherapy-related nausea/vomiting and some types of pain.
Studies have since supported this decision, although scientifically
rigorous research is still greatly needed to confirm benefits, espe-
cially when used to help with symptoms such as dry mouth, hot
flashes, and fatigue.48 Due to side effect profiles and the already
high chemical burden carried by cancer patients, finding safe
and effective non-pharmacological treatments for psychological
symptoms like depression, anxiety, and insomnia is of growing
need. The high prevalence of these symptoms in this population
creates a particularly urgent interest among both physicians and
patients alike. In a recent review by Haddad and colleagues,49 all
studies meeting inclusion criteria demonstrated a positive signal
for acupuncture for the treatment of depression, anxiety, sleep
disturbance, and for improving quality of life, with most results
showing statistical significance. Few of these studies, however,
were specifically designed to evaluate mood disturbance, sleep, or
quality of life as primary outcomes. Furthermore, there was wide
variability in both study design and treatment methods. The lack
of scientific rigor and methodological detail in trials published
to date affects generalizability, and validity of research involving
acupuncture. So, although the current evidence is encouraging,
high-quality randomized clinical trials are needed in order to pro-
vide clear recommendations for patients and physicians regarding
their use.
Nutrition and Exercise
Growing evidence supports the important role of physical activity
and nutrition in the health of cancer patients, and these factors
have been correlated with improved clinical outcomes. 50,51 An
integrative care plan is not complete without a personalized dis-
cussion regarding a patients individual dietary needs and physi-
cal activity goals. Extensive information on physical activity and
exercise is provided in Chapter67.
SUMMARY
CAM and Symptom Management
Routine assessment for interest in and prior use of CAM is critical
to the ongoing care of patients and to ensure the highest qual-
ity care.52 Acollaborative approach involving the patients main
oncology team and colleagues in integrative medicine, palliative
care, pain management, psychiatry, and rehabilitation can more
effectively meet patients needs. For those seeking integrative
medicine approaches for the management of their symptoms, this

Integrative Oncology Consultation
Nutrition
Exercise
Rehabilitation
Acupuncture
Massage
Optimal Health &
Smoking Healing
Cessation = Improved Clinical
Outcomes
Psychiatry
Psycho-Spiritual
Chaplaincy
Meditation
Yoga
Tai Chi
Figure66.1 Integrative medicine model.
assessment is critical. CAM approaches can be incorporated into
the healthcare plan from diagnosis, through active treatment, sur-
vivorship, and end of life. Apersonalized symptom management
strategy utilizing an evidence-based application of conventional
and non-conventional therapies can help improve quality of life
and optimize treatment outcomes.53
Integrative oncology is an expanding discipline that holds tre-
mendous promise for additional treatment and symptom con-
trol options. An integrative approach provides patients, from
diagnosis through survivorship, with a comprehensive system of
care to help meet their needs. An integrative, interdisciplinary
approach works with the bio-medicine approach54 to advocate
the importance of psycho-spiritual and social needs. Following
Engels model as a base, at our Integrative Medicine Center at
MD Anderson Cancer Center, our integrative oncologists will
provide guidance on a comprehensive and integrative approach
to patients cancer care, and will refer, depending on the case,
to the different clinical modalities such as acupuncture, oncol-
ogy massage, nutrition, physical activity, music therapy, medita-
tion, or other mind-body practices such as yoga, tai chi, and qi
gong in a group environment. In addition, the entire integra-
tive medicine team meets to discuss which of the individual or
group modalities are best for each patient. Open communication
between conventional and non-conventional healthcare providers
can help patients better meet their health goals in a safe manner
(see Figure66.1). Therefore, all clinical providers have access to
and write their notes in the electronic clinical station. In this way,
individuals with cancer will receive the best medical care, making
use of all appropriate treatment modalities in a safe manner to
achieve optimal clinical outcomes.
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 CHAPTER67
Physical Activity and
Exercise Interventions
in Cancer Survivors
Kerry S.Courneya, Jennifer J.Crawford,
and Scott C.Adams
INTRODUCTION
Longer survival and more tolerable treatments have generated
interest in behavioral strategies that might further improve
symptom management, quality of life (QOL), and survival in
cancer survivors. One lifestyle factor that has received substantial
research attention in recent years is physical activity (PA). PA is
defined as any bodily movement produced by the skeletal mus-
cles that results in a substantial increase in energy expenditure.1
Leisure-time PA refers to activity undertaken during discretion-
ary time based on a personal choice and is usually contrasted
with occupational and/or household activity. Exercise is a form
of leisure-time PA that is performed on a repeated basis over an
extended period of time with the intention of improving fitness,
performance, or health.1 The purpose of this chapter is to provide
an overview of the latest research on PA and exercise interven-
tions in cancer survivors.
Research on exercise interventions in cancer survivors has
increased dramatically over the past decade, resulting in a grow-
ing number of systematic reviews and meta-analyses. When
research was much more limited, early reviews often included all
cancer survivor groups, all phases of the cancer trajectory, and all
outcomes. Now that the research is much more plentiful, recent
systematic reviews have become more targeted by focusing on a
specific cancer site (e.g., breast, prostate, lung), a specific phase
of the cancer trajectory (i.e., pre-treatment, active treatment, sur-
vivorship, and palliative care), and/or a specific outcome (e.g.,
cardiorespiratory fitness, muscular strength, fatigue, depression,
survival). Given the sheer volume of research on exercise in cancer
survivors, we rely on these systematic reviews to summarize the
latest research. We organize this chapter by each of the three key
factorscancer site, phase of the cancer trajectory, and outcome
of interest. We end by discussing the recent exercise guidelines for
cancer survivors.
SYSTEMATIC REVIEWS OF EXERCISE
INTERVENTIONS IN CANCER SURVIVORS
BY CANCER SITE
The cancer site being studied is an important issue for exercise
interventions because cancer includes many different diseases
that can vary dramatically based on the pathophysiology of the
disease, prognosis, types of treatments, side effects, demographic
profile (e.g., age range, sex distribution), medical profile (e.g.,
obesity rates, comorbidities), and even behavioral profile (e.g.,
smoking history, alcohol consumption, past exercise). Although
early exercise research sometimes included participants with
different cancer diagnoses, most recent studies have focused on
a single cancer site, most notably breast cancer. Consequently,
many recent systematic reviews of exercise interventions in cancer
survivors have been organized by cancer site (Table 67.1). These
systematic reviews typically include studies that cut across the
different phases of the cancer trajectory, different outcomes, and
different types of exercise interventions.
McNeely etal.2 reviewed the effects of exercise in breast can-
cer survivors. Data from 14 randomized controlled trials (RCTs)
involving 717 patients/survivors were reviewed. Pooled data dem-
onstrated significant and meaningful improvements in QOL,
peak oxygen consumption, physical functioning, and well-being,
but not body weight. Moreover, there was some suggestion that
the benefits were larger for survivors who had completed adju-
vant treatment compared to those receiving treatment. Overall,
the evidence suggests substantial benefits from exercise for breast
cancer survivors.
Baumann et al. 3 reviewed the impact of exercise in pros-
tate cancer survivors. The review contained 25 RCTs including
almost 2500 prostate cancer survivors. Exercise interventions
during active treatment showed significant benefits for muscular
516 Section X evidence-based interventions

Table67.1 Summary of Exercise Effects by Cancer Site

Cancer Site Summary of Evidence

Breast Compelling evidence of benefit from numerous RCTs
Exercise modalities studied included aerobic, resistance, and combined interventions
Significant improvements in QOL, aerobic capacity, physical function, fatigue, and well-being

Greater improvements observed in post-treatment setting

Prostate Compelling evidence of benefit from numerous RCTs

Exercise modalities studied included aerobic, resistance, and combined interventions
Significant improvements in muscular strength, aerobic capacity, QOL, flexibility, body composition,
fatigue, treatment toxicity, and blood lipid profile
Greatest improvements with supervised resistance training

Colorectal Limited evidence from relatively few RCTs

Established exercise safety and feasibility
Reported benefits restricted to improvements in physical fitness

Lung Limited evidence from mostly uncontrolled trials

Established exercise safety and feasibility

Pre- and post-treatment improvements in exercise capacity

Lymphoma Limited evidence from relatively few RCTs

Established exercise safety and feasibility, with limited evidence for improvements in QOL, happiness,
depression, and general health
Other Insufficient evidence for systematic reviews
Preliminary reports from individual studies of exercise safety, feasibility, and benefits in some cancer
survivor groups (e.g., ovarian, endometrial, kidney, bladder, head and neck)
Overall evidence is inconclusive

Abbreviations:RCT=randomized controlled trial; QOL=quality of life

strength, aerobic fitness, QOL, fatigue, and treatment toxicity,
with greater gains achieved with resistance training. The authors
reported additional exercise benefits for flexibility, body composi-
tion, and blood-lipid profile, and noted larger benefits for super-
vised exercise programs.
Cramer et al.4 conducted the first systematic review and
meta-analysis of exercise for colorectal cancer survivors. Their
review identified only five RCTs involving 238 patients. Results
showed no short-term effects on quality of life or fatigue; however,
significant effects were reported for short-term improvements in
physical fitness. Based on the insufficient evidence, the authors
concluded that further research is required to establish whether
exercise interventions can be used as a routine intervention for
colorectal cancer survivors.
Granger et al.5 conducted a systematic review on the safety,
feasibility, and efficacy of exercise in non-small cell lung cancer
(NSCLC) survivors. Their review identified 13 studies involving
675 NSCLC patients, but only two of the studies were RCTs. The
authors concluded that exercise is safe and feasible for NSCLC
survivors before and after cancer treatments and that improve-
ments in exercise capacity could be achieved. There was limited
evidence, however, for the benefits of exercise for symptom man-
agement or QOL.
Vermaete etal.6 performed a systematic review of exercise in
lymphoma survivors. The authors identified 13 studies involv-
ing 2253 lymphoma survivors; however, only two studies were
interventions. In the observational studies, higher physical activ-
ity was associated with decreased fatigue and depression, as well
as increased QOL. The two intervention studies included only 149
lymphoma survivors, and only one study was deemed to be of high
methodological quality. That study reported exercise-related ben-
efits for QOL, happiness, depression, and general health. Overall,
however, the authors suggested that the limited RCT data make it
difficult to draw definitive conclusions on any outcomes for this
group of survivors.
SYSTEMATIC REVIEWS OF EXERCISE
INTERVENTIONS IN CANCER SURVIVORS
BY CANCER TRAJECTORY PHASE
The phase of the cancer trajectory is another important factor
that may influence exercise interventions. In simple terms, the
post-diagnosis time period can be divided into pre-treatment,
active treatment, survivorship, and end of life.7 Pre-treatment
includes the period after a definitive cancer diagnosis until treat-
ment is first initiated. Although this period is often short for many
cancers (i.e., days to a few weeks), there are several situations in
which it may last for months or even years (e.g., active surveillance
or watchful waiting for non-Hodgkins lymphoma or prostate
cancer survivors). The treatment period is usually defined as
receiving the primary cancer treatments, such as surgery, radia-
tion therapy, chemotherapy, and biologic therapies. The amount

of time spent in the treatment phase may last for months or even
years. Survivorship is the disease-free period after primary treat-
ment until the development of a cancer recurrence or death. It is
probably useful to make a further distinction between an early
survivorship phase focused on recovery (e.g., within 612months
after treatment) and a longer term survivorship phase focused on
health promotion and disease prevention.7 The end-of-life phase
refers to the situation when the disease is incurable and progres-
sive, and the primary focus is on palliative care. Although some
early exercise studies included participants at different phases of
the cancer trajectory, most recent studies have focused on a sin-
gle phase, with the most common being the treatment and early
survivorship phases. More recent studies have also examined the
pre-treatment phase and palliative care phase, allowing system-
atic reviews to emerge on these phases (Table 67.2).
Singh etal.8 conducted the first systematic review of pre-surgery
exercise training in cancer survivors. The review identified 18
studies involving 966 participants, mostly lung cancer survivors.
The majority of studies prescribed aerobic exercise, while one
study tested resistance training. There was a large variation in the
mode, frequency, duration, and the intensity of the exercise inter-
vention across the varying cancer groups. The authors reported
preliminary positive changes in functional walking capacity and
cardiorespiratory fitness; however, much more research is needed
to determine the feasibility of exercise pre-treatment and whether
any clinical outcomes can be improved (e.g., treatment delay,
treatment complications).
Table67.2 Summary of Exercise Effects by Phase of the Cancer
Trajectory
Trajectory Summary of Evidence
Phase
Pre-treatment Limited evidence from mostly uncontrolled trials
Preliminary reports of improvements in walking capacity
and aerobic fitness
Additional research required
Active Compelling evidence of benefit from numerous RCTs
Treatment Reported benefits across a variety of exercise modalities
Improvements in QOL and fatigue, as well as improved
physical, role, and social functioning
Greater improvements with moderate to vigorous
versus light intensity exercise
Survivorship Compelling evidence of benefit from numerous RCTs
Reported benefits across a variety of exercise modalities
Improvements in QOL, fatigue, pain, anxiety, body
image/self-esteem, and decreased sleep disturbances;
reported benefits may be larger than during active
treatment
Palliative Care Limited evidence of safety and feasibility from
uncontrolled trials with few RCTs
Exercise modalities studied include aerobic and
resistance training; safety and feasibility still unclear
Modest level of exercise tolerance and some
improvements in patient-reported outcomes
Chapter67 physical activity and exercise 517
Mishra et al.9 conducted a systematic review of exercise dur-
ing cancer treatments. The review included 56 trials involving
4826 breast, prostate, gynecologic, hematologic, and other cancer
survivor groups. There was a wide range of interventions across
trials, including walking, cycling, resistance training, strength
training, cycling, and yoga. The results revealed that exercise had
a positive effect on overall QOL, physical functioning, role func-
tioning, fatigue, and social functioning. Exercise interventions
also resulted in a significant reduction in anxiety for breast cancer
survivors, while there was a reduction in depression, fatigue, sleep
disturbances, and improvements in QOL for non-breast cancer
survivors. Moderate-to-vigorous exercise was found to be more
beneficial than light exercise.
Mishra etal.10 conducted a similar systematic review of exercise
interventions after cancer treatments. This review identified 40
trials involving 3694 breast, colorectal, head and neck, lymphoma,
and other cancer survivors. Exercise interventions included
strength training, resistance training, walking, cycling, yoga,
and tai chi. The results revealed that exercise had a positive effect
on QOL, body image/self-esteem, sleep disturbance, social func-
tioning, anxiety, fatigue, and pain. There was a positive trend for
depression and body image, but no benefits for cognitive function,
physical functioning, general health, role function, or spirituality.
In one of the early systematic reviews of exercise for palliative
cancer patients, Lowe etal.11 identified six pilot studies, of which
one was an RCT. All studies examined the effect of physical activ-
ity on QOL, fatigue, and physical function. Three of the stud-
ies examined aerobic exercise interventions; three of the studies
examined mixed interventions, including both aerobic and resis-
tance exercise. It was noted that some palliative cancer patients
were able to tolerate physical activity and some experienced
benefits in patient-reported outcomes. Nevertheless, the overall
methodological quality of the studies was modest, and the authors
noted that there is insufficient evidence to conclude that physical
activity is beneficial to palliative cancer patients.
SYSTEMATIC REVIEWS OF EXERCISE
INTERVENTIONS IN CANCER SURVIVORS
BY OUTCOME
Exercise interventions in cancer survivors have included
many different primary and secondary outcomes, including
(1)health-related fitness (e.g., aerobic fitness, muscular strength,
body fat), (2) physical functioning (e.g., 6-minute walk, sit-to-
stand, 8-foot get up and go), (3)symptoms (e.g., fatigue, pain, hot
flashes), (4) psychosocial functioning (e.g., depression, anxiety,
self-esteem), (5)QOL (e.g., physical well-being, social well-being),
(6)biomarkers, and (7)disease outcomes (e.g., disease-free sur-
vival, cancer-specific mortality, overall survival). Moreover,
many studies have included multiple endpoints from more than
one of these categories. Most exercise studies have focused on
health-related fitness and patient-reported outcomes; however,
there has been a growing interest in cancer outcomes and associ-
ated mechanisms.
In terms of health-related fitness outcomes, Jones etal.12 evalu-
ated the impact of supervised exercise training on peak oxygen
consumption (VO2peak) across six studies involving 571 cancer
patients. Despite significant heterogeneity, supervised aerobic
518 Section X evidence-based interventions
exercise was shown to significantly improve VO2peak by about 2.9
mlkg-1min-1. The review also identified a significant decrease in
VO2peak in control participants of about 1.0 mlkg-1min-1. The
authors noted that active cancer treatments may moderate the
effects of exercise on VO2peak in cancer survivors.
Stene et al.13 conducted a systematic review of the effect of
exercise during treatment on muscle mass and strength of can-
cer patients. The review identified 14 RCTs involving 1377 cancer
patients with mixed diagnoses. Significant overall improvements
were noted for upper and lower body strength. The pooled data
from the six RCTs with 444 survivors (mixed diagnoses) dem-
onstrated a trend toward the maintenance of muscle mass with
exercise.
Ingram etal.14 examined the evidence concerning the impact
of exercise on body weight and composition in breast cancer sur-
vivors. Data from 725 breast cancer survivors were reviewed from
a mix of nine RCTs and five non-randomized trials. Significant
differences were reported for body weight in only three of ten tri-
als. Beneficial effects of exercise were more often reported (4 of 6
studies) for body composition outcomes (i.e., muscle gain and fat
loss). Specifically, the studies reported between 2.6% and 11.7%
decrease in percentage of body fat from exercise.
Winters-Stone etal.15 reviewed the evidence for the impact of
exercise on the bone health of cancer survivors. Eight studies were
included in the review, which involved 491 breast cancer and 76
mixed (prostate, breast, lymphoma, and colon) cancer survivors.
The overall results from this limited body of literature indicated a
small effect (1%5%) of exercise on preserving or improving bone
health either during or following cancer treatment. Nevertheless,
the authors noted several methodological factors that may have
confounded the results. Future investigations of exercise-related
bone health in cancer survivors should develop their exercise
interventions according to osteogenic training principles.
In terms of patient-reported outcomes, Ferrer et al.16 con-
ducted a meta-analysis to examine the effects of exercise on
improving QOL in cancer survivors. The review identified 78
intervention studies involving 3629 mixed cancer survivors. The
review revealed that exercise had a significant positive effect on
QOL. Higher intensity aerobic exercise resulted in greater QOL
increases compared to lower intensity exercise. Finally, the review
found that studies which included more women tended to report
greater QOL increases.
Puetz et al.17 systematically reviewed RCTs on the effects of
exercise on cancer-related fatigue in cancer survivors. The review
identified 70 studies involving 2881 cancer survivors. The results
showed that exercise significantly decreased cancer-related fatigue
during and after cancer treatment. During treatment, improve-
ments were largest for individuals with worse baseline fatigue
scores and higher exercise adherence. Post-treatment, the larg-
est improvements in fatigue were for trials with longer duration
between treatment completion and the beginning of the exer-
cise intervention, shorter exercise duration lengths, and wait-list
comparisons. These results provide support for prescribing exer-
cise during and after cancer treatment to improve cancer-related
fatigue.
Brown etal.18 conducted a meta-analysis to examine the effects
of exercise on depressive symptoms in cancer survivors. There
were 40 exercise interventions involving 2929 breast, prostate,
leukemia, lymphoma, and colorectal cancer survivors. Overall,
exercise provided only a small reduction in depressive symp-
toms. Interestingly, in high-quality trials, depressive symptoms
decreased in a dose-response fashion as the weekly volume of
aerobic exercise increased, as well as with supervised exercise,
and among survivors 4762 years of age. This review provides
only modest evidence that aerobic exercise may potentially reduce
depressive symptoms among cancer survivors.
In terms of the cancer-related outcomes, Lf etal.19 conducted
a systematic review of nine RCTs studying the effects of physical
activity on biomarkers in 436 breast cancer survivors. Statistically
significant effects of physical activity were noted for insulin, IGF-I,
-II and IGFBP, albeit inconsistently across the trials. Adecrease in
C-reactive protein and an increase of natural killer cytotoxic activ-
ity were each reported in one trial. None of the four trials inves-
tigating interleukin-levels reported any effect of physical activity.
The authors noted that baseline obesity levels and the influence of
medication (i.e., tamoxifen) may be confounders across the trials.
Ballard-Barbash et al. 20 performed a systematic review of
the relationships between physical activity and all-cause and
cancer-specific mortality. Evidence from 17 observational studies
in breast cancer survivors showed that higher levels of exercise
were associated with lower all-cause and breast cancerspecific
mortality, and the relationship appeared to be dose-sensitive.
Three of six studies involving colorectal cancer survivors reported
cancer-specific risk reductions associated with physical activ-
ity, which also appeared to be dose-sensitive. The sole study of
physical activity and prostate cancer survival reported that higher
post-diagnosis physical activity levels were associated with signifi-
cant reductions in all-cause and breast cancerspecific mortality,
both appearing to be dose-sensitive. Overall, the observational
evidence suggests that exercise is associated with lower all-cause,
and both breast cancer and colon cancerspecific mortality; how-
ever, no RCTs have examined this question.
CLINICAL AND PUBLIC
HEALTHGUIDELINES
Although much research remains to be done, progress in under-
standing the role of exercise in cancer survivors over the past
decade has been substantial. On the basis of the current evidence,
the American College of Sports Medicine and the American
Cancer Society have recommended regular exercise to cancer sur-
vivors.21 These guidelines propose that cancer survivors should
perform either 75 minutes of vigorous intensity or 150 minutes of
moderate intensity aerobic exercise per week, or some combina-
tion of the two (Table 67.3). The guidelines also advise that the
total exercise should be spread across at least three days/week (e.g.,
3days of 25 minutes of vigorous exercise, or 3days of 50 minutes
of moderate exercise). Moreover, cancer survivors should also per-
form resistance exercise for all major muscle groups at least two
days/week. If these guidelines are not achievable, cancer survi-
vors should do their best to avoid inactivity by engaging in at least
some light activities of daily living.
Exercise during adjuvant therapy is more challenging but
feasible for many cancer survivors and results in impor-
tant benefits. Depending on fitness level, comorbidities, and
treatment toxicities, cancer survivors should begin at short
durations (e.g., 510 minutes) and moderate intensity (e.g.,
60%70% of heart rate maximum) and progress slowly over
 Chapter67 physical activity and exercise 519

Table67.3 Summary of Exercise Recommendations For Cancer Survivors From the American College of Sports Medicine

Physical Activity Type Target Dose

Aerobic Option 1 Option 2
Exercise Frequency Frequency
37days per week 37days per week

Intensity Intensity
Moderate Vigorous

Time Time
150 minutes/week 75 minutes/week

Bouts of 10 minutes Bouts of 10 minutes

Type Type
Any (e.g. walking, cycling, tennis) Any (e.g., jogging, soccer, snowshoeing)

Resistance Exercise* Frequency

2days per week

Intensity
Moderate to vigorous (60%80% 1 RM)

12 minutes of rest between sets

Volume
13 sets of 812 repetitions

Exercises
All major muscle groups (chest, back, shoulders, arms, abdomen, hips, legs)

Flexibility Stretch all major muscle groups on days that other exercises are performed
Exercise
Avoid All patients and survivors are encouraged to be as physically active as their conditions will permit.
Inactivity

Adapted from Schmitz KH, Courneya KS, Matthews C, Demark-Wahnefried W, Galvao DA, Pinto BM, etal. American College of Sports Medicine roundtable
on exercise guidelines for cancer survivors. Med Sci Sports Exerc. 2010;42(7):14091426.
*Adapted from ACSM 2010:http://www.acsm.org/docs/brochures/resistance-training.pdf.

the course of adjuvant therapy as tolerated. Most cancer sur-
vivors prefer walking, and this activity will likely be sufficient
to meet the recommended intensity during adjuvant therapy.
Exercise progression during adjuvant therapy is unpredictable
and does not always follow a linear course given the accumu-
lating side effects of most cancer therapies. Cancer survivors
should be encouraged to exercise to tolerance during adjuvant
therapy, including reducing intensity and durations if needed.
Resistance training may be particularly helpful to cancer sur-
vivors during adjuvant therapy.
SUMMARY
Longer survival and more tolerable treatments for many cancer
survivors have created an opportunity to examine the role of life-
style in improving QOL, symptom management, and reducing
the risk of recurrence and extending survival. Research on PA
and exercise has increased dramatically in the past decade and
is producing compelling results. In addition to improvements in
health-related fitness and patient-reported outcomes, there are
numerous prospective observational studies that have reported
an inverse association between post-diagnosis PA and disease
recurrence, cancer-specific mortality, and all-cause mortality in
several cancer survivor groups. To date, however, there are no
RCTs demonstrating that adopting a PA program after a cancer
diagnosis can alter the course of the disease or extend overall sur-
vival. Nevertheless, qualified fitness and cancer care professionals
should feel comfortable recommending exercise to cancer survi-
vors during and after treatments based on evidence for benefits
in health-related fitness, physical functioning, symptom manage-
ment, and QOL.
In this chapter, our review of reviews indicates that exercise
is clearly beneficial for breast and prostate cancer survivors, while
the evidence for other cancer survivor groups is still quite mod-
est. The reviews have also shown that exercise is beneficial during
and after cancer treatments, while the evidence for benefit in the
pre-treatment and palliative care phases is still emerging. Finally,
the reviews show benefits for many important outcomes, includ-
ing aerobic fitness, muscular strength, QOL, physical functioning,
and fatigue, while evidence for other outcomes is either insuffi-
cient (e.g., bone health, peripheral neuropathy, cognitive function,
hot flashes, survival) or inconsistent (e.g., sleep quality, depres-
sion, biomarkers, body composition). The ultimate goal of this
field is to have systematic reviews that identify the optimal exer-
cise prescription for a particular outcome, for a particular cancer
survivor group, during a particular phase of the cancer trajectory.
We anticipate that such reviews may be feasible for future editions
of this book.
520 Section X evidence-based interventions

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 CHAPTER68
Acceptance and
Commitment Therapy
(ACT) for Cancer Patients
Nick Hulbert-Williams and Ray Owen
INTRODUCTION
Acceptance and commitment therapy, or ACT (spoken as one
word, not as individual letters), is one of the newer variants of cog-
nitive behavioral therapy (CBT). Collectively, these have become
known as third-wave or next generation CBT.1 ACT is rooted to explain the often distressing consequences of problematic lan-
firmly within contextual behavioral science2 and has a transdi-
agnostic approach to intervention; thus it does not require the
treatment protocol to be tailored to specific diagnoses or causes
of distress. Previous interventions for psychological well-being
in cancer populations have tended toward being delivered in a
problem-focused framework, and it has been suggested that it may
be this focus that limits their potential effectiveness; it is within
this context that a transdiagnostic approach, such as ACT, may
hold promise.3 The goal of an ACT-based intervention is not to
change or adapt problematic or distressing thoughts, but rather
to change their function at the individual level;4 this is a complex
distinction, which we will attempt to outline in this chapter, and
essentially involves teaching clients ways of reducing the influence
of problematic thoughts and feelings on their behavior and goal
achievement. In doing so, ACT utilizes and promotes a model of
understanding and treating mental health issues that is somewhat
outside the traditional medical model. This chapter will outline
the theoretical underpinnings of ACT and will describe how it
might be used in oncology practice; our intention in doing so is
not to suggest that ACT is the only suitable method of intervention
for use in the cancer setting, but instead to promote it as a use-
ful component in the clinicians toolkit when supporting cancer
patients and survivors.
THEORETICAL UNDERPINNINGS
AND THEHEXAFLEX MODEL OF
PSYCHOLOGICAL FLEXIBILITY
Relational frame theory (RFT) describes a behaviorist account of
the nature and function of human language, rooted within contex-
tual behavioral science tradition.2,5 The theory posits that verbal
events (either spoken communication, or nonverbalized mental
processing such as thinking) should be treated just the same as any
other type of behavior. It builds on earlier behaviorist principles
by stating that language, just like any other behavior, is subject to
contingencies of response and reaction that have historically been
behaviorally reinforced. 5 RFT is important to ACT, as it is used
guage contingencies, for example the believability and perceived
literality of a thought, or the learned (reinforced) emotional con-
sequences of certain sets of verbal stimuli. For instance, a person
may habitually have benefited from the mental rule always expect
the worst, then you wont be disappointed, yet in the context of
cancer treatment, this approach may lead to hopelessness and
inappropriate treatment decisions. The ACT model suggests that it
is these reinforcement histories which create feelings of suffering
and emotional distress, and which underlie what we have come to
think of as the presence of psychological disorders such as anxi-
ety or depression. It is this pivotal role of language that informs
the ACT approach to therapeutic intervention. ACT maintains
that an individual perception of suffering and distress is a normal
and healthy response to traumatic and challenging situations; the
goal of the therapist, therefore, should not be to eradicate those
responses, but to enable the client to embrace those responses and
to live with them.
This is based on a sound and growing evidence base explor-
ing the components of change in psychotherapeutic interven-
tions. Longmore and Worrell,6 for example, critically review the
evidence available that examines the effectiveness of challenging
cognitions within therapy and conclude that ... there is little
empirical support for the role of cognitive change as causal in
the symptomatic improvements achieved in CBT (p. 173).
Furthermore, thought change (as is central to some other types
of intervention) relies on the client being able to suppress his or
her initial, distressing thought, which recent evidence suggests
may be more problematic than simply leaving the thought alone
to begin with, and often results in that same thought, or thoughts
related to it, being more likely to occur in the future. 2,7 In line
with its behaviorist principles, therefore, ACT does not aim to
remove or alter the content of problematic cognition, but instead
522 Section X evidence-based interventions
to reduce its behaviorally limiting impact,8 thus making the indi-
vidual less rule-goverened and rigid in his or her psychological
responding. It does this, for example, by opening up awareness
of the importance of context in responses through an increase in
mindfulness skills9 or by using techniques to help clients recog-
nize the distinction between a thought and the reality (accurate
or otherwise) to which that thought refers.10 For example, when
a person is angrily preoccupied with a delayed cancer diagno-
sis, it is often not the real and severe consequences of that event,
but the replaying of thoughts about the event, that is interrupting
sleep and reducing engagement with everyday life. In doing so,
the ACT therapist encourages the client to become more psycho-
logically flexible.
Within the ACT literature, the terms psychological flexibil-
ity and acceptance have been used somewhat interchange-
ably; however, more recent descriptions of the ACT model tend
to describe flexibility as the desired outcome (or measure of
process change) of ACT therapy, with acceptance being just
one, albeit very important, construct or determinant of that
change. In this context, acceptance should not be understood
as a passive or self-defeating stance11 but as a conscious activ-
ity in which the client engages. This may seem somewhat at
odds to some of the more historic psycho-oncology literature
in which the term acceptance has been used in a more nihil-
istic way (for example, acceptance of the determinate nature
of transition toward palliative care and impending death). For
the purposes of this chapter, and indeed for an accurate under-
standing of ACT, acceptance is to be understood as an active
choice against experiential avoidance (including avoidance of
thoughts, feelings, and emotions) such that the individual is
able to maintain full contact with the present moment experi-
ence (i.e., a willingness to have unwanted experiences if that is
what is taken to do the things that matter to the individual). The
ability to do this often relies on other ACT-related techniques
(which we will describe later in this chapter), but is at the core
of what ACT is about. It is not the existence of suffering that
causes psychopathology, but rather that our attempts to avoid
thoughts and experiences which bring this to our conscious
attention lead us (often unintentionally and unconsciously) to
actively withdraw from living a values-driven life.
In addition to acceptance, there are five other core processes
involved in ACT, each one of which affects an individuals level
of psychological flexibility. These processes together (accep-
tance, mindfulness and present-moment attention, cogni-
tive defusion, self-as-context, values, and committed action)
make up what is known in contextual behavioral science as the
Hexaflex Model, and it is this which underpins ACT formula-
tion and treatment.9
As an intervention technique, mindfulness training is a cru-
cial component to ACT (see Chapter63 for further discussion).
Though mindfulness training will not be described in detail
here, it is pertinent to point out its place within the Hexaflex
Model, and to note that in different uses of the term (i.e., in
mindfulness-based stress reduction, mindfulness-based cogni-
tive therapy, and ACT), mindfulness as a construct may be con-
strued in subtly different ways. In ACT, it is used both as a clinical
technique (to work on other parts of the Hexaflex in an experi-
ential way), and as a component of flexibility (often referred to
within this context as present moment awareness). Here, ACT
aims to bring the clients attention into the present moment to
reduce a focus on rumination of the past, or worry about the
future. It also encourages a client to have an open approach to all
experiences (psychologically internal or external), whatever their
emotional consequences may be;12 it is impossible, for example,
to be accepting of suffering and distress if one first doesnt allow
oneself to be willing to experience that suffering in a real and
truthful way. A further benefit of present moment awareness
within ACT is that it allows individuals to track what is actu-
ally happening in their lives at every point in time, and to dis-
cover what actually works for them in coping with stressors and
distress. This is as opposed to being dominated by the rules of
their past learning history, or being controlled by their fears of an
unknown future, for example, learning to persist with meaning-
ful activities rather than allowing memories of diagnosis or fear
of recurrence to dominate present experiences.
Cognitive defusion and self-as-context are processes that get to
the core of altering the function of distress-inducing behavioral
contingencies. Functional fixedness is the term given to explain
cases in which a client has become overly attached and focused
on the content of his or her cognitive processes, rather than the
function of them.13 ACT uses cognitive defusion to alter the way
that clients interact with their thoughts and thought processes,4
thus aiming to weaken the limiting behavioral repertoires that
lead problematic cognition to negatively influence behavior. At
the same time, we know that distressed individuals often strug-
gle with the distinction between their internal psychological
processes (cognitive and emotional) and their perception of the
self. By increasing mindfulness skills and encouraging a client to
interact with her cognitions differently, ACT enables a distinction
between self-as-process (constant mindfulness of internal psycho-
logical phenomena), and self-as-context:awareness and apprecia-
tion that those phenomena are distinct from the experiencing self,
and are not, therefore, inevitable.
The final two components of the model are values and com-
mitted action, and these are almost inextricably linked. Within
the ACT framework, values are defined as individually and freely
chosen and defined, verbalized, desired actions, which influ-
ence both the way in which one lives his or her life, and against
which lived experiences can be evaluated; in essence, they estab-
lish behavioral reinforcers for desired outcomes.9 Values identi-
fication is an important part of ACT, as clients are more readily
able to live a present-mindful and accepting life, even in a con-
text of suffering, if they know that they are working within their
own defined values (for example, being honest, being support-
ive, being a good parent). It is the final component, committed
action, that brings the model together as a whole, as achieving
an ACT-consistent approach requires a personal commitment to
(a)live a values-consistent life, and (b)actively and openly accept
the suffering and distress that are experienced by living in the
present moment. Defusion, self-as-process, and mindfulness are
all techniques through which clients can equip themselves to meet
this personal commitment and achieve improved psychological
flexibility. Of course, it is very rare indeed that everyone can live
according to a values-committed framework at all times; the key
feature here is that a psychologically flexible individual will be
able to return to her values despite setbacks, and that the process
of continually returning to and refining ones own values will be
in and of itself intrinsically reinforcing.9

A REVIEW OF THE EVIDENCE BASE
ACT has a strong empirical basis,14 and much of this comes
from working with broader clinical psychology populations, for
example those with addictive disorders, psychosis, and the anxi-
ety and mood disorders. Though there is some contention as to
whether ACT can out-perform other modes of psychological
intervention,15 meta-analyses consistently demonstrate the ben-
efits of ACT across a wide range of disorders when compared with
control groups.16 Of special note is the evidence of the effective-
ness of ACT for anxiety and depression, the two most commonly
reported clinical comorbidities within cancer populations.
There is a smaller but growing evidence base for the applica-
bility of the ACT framework for interventions for general popu-
lations and those with physical health conditions. This research,
based on work with healthy elderly populations, and patients
with epilepsy, diabetes, and chronic pain, for example, is begin-
ning to demonstrate a sound evidence base for various beneficial
effects, including reduced distress,17 improved quality of life,18
and more effective self-management of chronic illness.19 Many
of these research-based approaches are also now being translated
into self-help resources for those coping with chronic illness. 20
With its transdiagnostic approach, focusing on adaptability and
resilience, ACT may be similarly useful within the cancer setting,
where patients often tend to be more psychologically overwhelmed
and distressed rather than suffering from clinically diagnosable
pathology.3
Early dissemination of the application of ACT in the cancer set-
ting was largely published through case analyses, which though
somewhat useful, are methodologically limited. Recently, a
smaller number of more rigorously designed studies have begun
to expand this specific application of ACT. For example, Rost
and colleagues21 report the results from a randomized controlled
trial of one-to-one ACT therapy (delivered over 12 weeks) for 47
patients diagnosed with late-stage ovarian cancer. When com-
pared with control participants who received traditional CBT,
their findings demonstrated significantly greater improvement
in distress (effect size=.89, p <.001), anxiety (effect size=1.25,
p=.009), depression (effect size=1.69, p=.012), and quality of life
(effect size=1.35, p=.002), despite deteriorating physical health
in many cases. Mediation analysis suggests that the biggest influ-
ence on outcome effects was the ability of ACT to better target and
improve cognitive avoidance.
In a similar study, but delivered using a non-randomized meth-
odology, Feros and colleagues22 published results from 45 patients
with mixed cancer diagnosis and severity who received one-to-one
ACT therapy. All of these patients had been previously screened
for cancer-related distress to ensure that effects were not diluted
through inclusion of patients who were not in need of psychologi-
cal intervention. In this study, ACT was delivered to participants
over nine weekly sessions and resulted in significantly improved
flexibility, which led to improved distress and mood (both large
effect sizes) and quality of life (medium effect size). This group of
researchers explored the significance of psychological flexibility
as a process measure in outcome improvement, demonstrating
that post-intervention to follow-up change scores in each outcome
were significantly predicted by mid- to post-intervention changes
in psychological flexibility (quality of life = .75, p <.001; dis-
tress =-.43, p <.05; mood =-.44, p <.05). These effects were
Chapter68 acceptance and commitment therapy 523
maintained even after earlier change in outcome measures were
statistically controlled for. Also of note is an earlier published
study by members of this same research group; though not an
intervention design, the findings revealed a significant positive
correlation between success at living according to self-defined val-
ues and a range of distress-related outcomes in a cross section of
cancer patients, and that gender differences exist in the relation-
ship between specific value domains and outcomes.23
Our own research program is currently exploring the applica-
tion of ACT for cancer survivors. Our forthcoming paper reports
on a survey in which we assessed a cross section of cancer sur-
vivors (breast, prostate, colorectal, and lung disease), compar-
ing correlation effect sizes between psychological flexibility (as
measured using the Acceptance and Action Questionnaire II)24
and important psychosocial outcomes with a range of more com-
monly assessed predictors such as coping and mental adjustment.
Findings confirm earlier suggestions that flexibility is a compara-
tively stronger (correlations were all medium and large effect sizes)
and consistent predictor of quality of life, anxiety, depression, and
perceived stress.25
While the evidence base for ACT in cancer samples is small,
all evidence to date is positive and indicates a real potential for
ACT to be used more extensively in the cancer setting. At its very
core, ACT is transdiagnostic in its approach to dealing with the
adversity and suffering that life brings, and so there is very little
reason to assume that what has been demonstrated to work else-
where would not be equally applicable to this client group. There
is, however, a very clear need for more empirical work both com-
paring ACT with other modes of psychotherapeutic intervention,
and exploring the process of change though ACT, if it is to have
a more significant impact. Further work should particularly con-
sider the use of ACT in modes of delivery other than one-to-one
therapy; for example, a small body of research is emerging on the
effectiveness of ACT in group26 and brief therapy27 format, and
this may be particularly suited to the oncology setting.
USING ACT IN THE CLINICAL SETTING
We now move on to describe how ACT might be applied within
the clinical cancer setting, as drawn from our own clinical prac-
tice and experience.
Helping Cancer Patients During Treatment
As explained earlier, ACT interventions do not target psycho-
pathology as such (the approach eschews diagnostic models of
psychological function), but rather enables individuals to have as
fulfilling a life as possible under whatever circumstances they find
themselves. Thus, intervention can help with many aspects of cop-
ing with cancer and its treatment.
Troubling Thoughts
Some of the most difficult thoughts experienced by cancer patients
(and their relatives) may be entirely accurate, for example, I
will die soon, and my children will be left without a mother.
Attempting to convince onself that this is untrue, or to minimize
the importance of the predicted state of affairs, is likely to be futile,
and well-meaning attempts to do so by friends may alienate the
patient. Applied to this situation, an ACT intervention may teach
skills of cognitive defusion, aiming to (a)recognize the presence
524 Section X evidence-based interventions
of the thought and concomitant emotions, and (b)acknowledge
that experiencing the thought in the here-and-now is a mental
event, and different from actually dying or leaving ones chil-
dren motherless. Mindfulness skills and self-as-context work will
enable the individual to develop defusion skills, and these same
approaches may help with broader rumination problems, includ-
ing worry-based insomnia.
Demoralization
People affected by cancer, especially in the later stages, may expe-
rience loss of hope, of meaning, and sense of personal worth.28 An
ACT intervention may address this by identification of personal
values (which have given the persons life meaning and vitality in
the past), followed by collaborative work on finding ways of act-
ing in service of those values within current physical limitations.
This will also involve learning to accept the presence of distress-
ing thoughts and feelings without avoiding or withdrawing from
meaningful activity.
Coping with Treatment Effects
In the midst of cancer treatments such as chemotherapy and
adjuvant endocrine therapies, the patients experience may be
dominated by unwanted physical feelings and side effects (fatigue,
nausea, pain). In extreme cases, this may lead to the desire to dis-
continue potentially life-saving treatments.29 Motivation to perse-
vere can be built by identifying and enhancing the willingness to
experience these effects as part of the price being paid to increase
the chance of a valued outcome. Avalued outcome here may not
necessarily be a longer life per se, but rather an increased oppor-
tunity to live according to ones values (being loving, being sup-
portive, being creative, etc.). The physical feelings are made more
bearable by disentangling and defusing them from the thoughts
and emotions that accompany them.
Grief
Grief in many forms is present in most cancer journeysgrief
for losses of health, appearance, roles, anticipatory grief prior to
death, as well as grief for a loved one who has died. ACT does
not seek to reduce this distress, but rather to accept the presence
of strong feelings as a price worth paying for living life accord-
ing to ones values; in this case, the individual will learn to accept
the presence of sadness, understanding it to be the consequence
of having things and people in ones life that matter enough for it
to hurt when you lose them. The only way to insulate oneself from
the pain of loss would be to avoid having anything in ones life
worth losing, but this is simply not a healthy and rewarding way to
live life. Simultaneously, ACT would emphasize committed action
to live a fulfilling life according to ones values, even in the pres-
ence of those powerful unwanted feelings.
ACT for Cancer Survivors
It is well documented that cancer-related trauma and distress can
have far-reaching consequences beyond the end of active cancer
therapy. With the ongoing side effects and the potential for sub-
sequent emergence of late effects of treatment, and the wider psy-
chosocial impact of cancer or fear that cancer may at some point
again recur, it is suggested that needs assessment and psychologi-
cal intervention should continue into survivorship and cancer
follow-up.30 Evidence for the benefits of psychological interven-
tions in follow-up is, however, inconsistent and, at best, weak. In a
conceptual review of the potential application of ACT for cancer
survivors, Hulbert-Williams, Storey, and Wilson3 suggest that this
may be because the underlying therapeutic frameworks used to
date are too problem-focused for this population, in whom more
generic distress is more prevalent. As such, ACT may provide a
more suitable alternative.
Psychoeducational survivorship programs are becoming a
common feature of post-treatment patient care. In our local hos-
pital, this is organized in a five-week program in which survivors
and their partners meet for 90 minutes per week for facilitated
discussions on topics such as diet and nutrition, stress manage-
ment, and fear of recurrence. For the past 18 months we have
been using an ACT framework for the fear of recurrence ses-
sion. Delivery is in a non-therapeutic format but is facilitated
by an ACT-trained psychologist. Through brief introductions
to the ACT model and core concepts, we begin by normaliz-
ing fear and other ongoing psychological responses to cancer.
Using group discussion and experiential activities, including
mindfulness-based activities, participants are then exposed to
strategies to combat thought avoidance and fusion. The impor-
tance of values-based living within the ACT context is intro-
duced toward the end of the session. We are currently evaluating
this intervention for patient acceptability, and preliminary data
are promising. 31 From wider literature it is clear that health
behavior and lifestyle interventions may be beneficial for cancer
survivors, 32 and so we are also in the process of developing an
extended version of this survivorship workshop that will address
not only psychological responses to cancer and its treatment, but
that will also use the ACT framework to encourage positive life-
style changes.
SUMMARY
Acceptance and commitment therapy (ACT) is an approach to
psychological intervention that has some fundamental differences
from more commonly used therapies, and its behavioral roots
have given rise to specific and effective psychological treatment
techniques. Though the evidence for ACT within cancer groups
specifically is somewhat small, it demonstrates significant and
powerful effects, and, using robust methodologies, is able to iden-
tify that the mechanisms for outcome improvement are, indeed,
the variables that we would expect to change during an ACT inter-
vention. This complements a substantial and consistent broader
evidence base for clients diagnosed with a range of psychological
and physical health conditions. Though ACT is becoming more
commonly used within the psycho-oncology clinical setting, there
is scope for expanding the availability of the approach. Arecent
UK-based study identified that therapists rate ACT as one of the
most suitable therapeutic frameworks for working with cancer
patients, and that their reticence to use it more often results not
from other approaches being more effective, but from the lack of
training opportunities available to them.33
The reader wishing to learn more about ACT (beyond this brief
introduction within a cancer context) might choose to consult
a thorough and scholarly introduction from originators of the
model2 or a more practically focused basic primer (e.g., Harris34).
The online home of the approach and the source of much fur-
ther information, including training events, is the Association for
Contextual Behavioral Science (www.contextualscience.org).
 Chapter68 acceptance and commitment therapy 525

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diabetes self-management through acceptance, mindfulness,
1. Hofmann S, Asmundson G. Acceptance and mindfulness-based
and values:a randomized controlled trial. J Consult Clin Psych.
therapy:new wave or old hat? Clin Psychol Rev. 2008;28(1):116.
2007;75(2):336343
2. Hayes SC, Strosahl KD, Wilson KG. Acceptance and Commitment
20. Owen RI. Living with the Enemy:Coping with the Stress of Chronic
Therapy:The Process and Practice of Mindful Change.
Illness Using CBT, Mindfulness and Acceptance. London:Routledge;
NewYork:Guildford Press; 2011.
2014.
3. Hulbert-Williams NJ, Storey L, Wilson K. Psychological interven-
21. Rost AD, Wilson KG, Buchanan E, Hildebrandt MJ, Mutch D.
tions for patients with cancer:psychological flexibility and the poten-
Improving psychological adjustment among late-stage ovarian cancer
tial resource of acceptance and commitment therapy. Under review.
patients:examining the role of avoidance in treatment. Cogn Behav
4. Hayes SC, Luoma JB, Bond FW, Masuda A, Lillis J. Acceptance and
Pract. 2012;19:508517.
commitment therapy:model, processes and outcomes. Behav Res
22. Feros DL, Lane L, Ciarrochi J, Blackledge JT. Acceptance and com-
Ther. 2006;44(1):125.
mitment therapy (ACT) for improving the lives of cancer patients:a
5. Hayes SC, Barnes-Holmes D, Roche B. Relational Frame
preliminary study. Psycho-Oncology. 2012;22(2):459464.
Theory:APost-Skinnerian Account of Human Language and
23. Ciarrochi J, Fisher D, Lane L. The link between value motives,
Cognition. NewYork:Springer; 2001.
value success, and well-being among people diagnosed with cancer.
6. Longmore RJ, Worrell M. Do we need to challenge thoughts in cogni-
Psycho-Oncology 2011;20(11):11841192.
tive behavior therapy? Clin Psychol Rev. 2001;27(2):173187.
24. Bond FW, Hayes SC, Baer RA, etal. Preliminary psychometric prop-
7. Wenzlaff RM, Wegner DM. Thought suppression. Annu Rev Psychol.
erties of the Acceptance and Action QuestionnaireII:a revised
2000;51(1):5991.
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8. Greco LA, Lambert W, Baer RA. Psychological inflexibility in
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childhood and adolescence:development and evaluation of the
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2008;20(2):93102.
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9. Wilson KG, DuFrene T. Mindfulness for Two:An Acceptance and
26. Ossman WA, Wilson KG, Storaasli RD, McNeill JR. A preliminary
Commitment Therapy Approach to Mindfulness in Psychotherapy.
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10. Blackledge JT. Disrupting verbal processes:cognitive defusion in
2006;6(3):397416.
acceptance and commitment therapy and other mindfulness-based
27. Bach P, Hayes SC. The use of acceptance and commitment therapy
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to prevent the rehospitalisation of psychotic patients:a randomized
11. Hayes SC, Smith S. Get Out of Your Mind and Into Your Life.
controlled trial. J Consult Clin Psychol. 2002;70(5):11291139.
Oakland, CA:New Harbinger Publications; 2005.
28. Kissane DW, Clarke DM, Street AF. Demoralization syndrome:a
12. Biglan A, Hayes SC, Pistorello J. Acceptance and commitment:impli-
relevant psychiatric diagnosis for palliative care. J Palliat Care.
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2001;17(1):1221.
13. Luoma JB, Hayes SC. Cognitive defusion. In:ODonohue WT, Fisher
29. Cella D, Fallowfield LJ. Recognition and management of treatment
JE, eds. Cognitive Behavior Therapy:Applying Empirically Supported
related side effects for breast cancer patients receiving adjuvant endo-
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empirical evidence:correlational, experimental psychopathology,
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component and outcome studies. IJP&PT. 2010;10(1):125162.
2012;106:15.
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32. Eccles S, Aboagye E, Ali S, etal. Critical research gaps and transla-
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18. Butler J, Ciarrochi J. Psychological acceptance and quality of life in
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 CHAPTER69
Psychosocial Interventions
for Couples and Families
Coping with Cancer
Talia I.Zaider and David W.Kissane
A cancer diagnosis marks a major transition in a familys life.
Cancer has been described previously as an uninvited guest that
enters the family group, demanding accommodation and draw-
ing on resources within the family system.1 Families are often
required to rearrange roles and responsibilities around patient
care, revise future plans and priorities, negotiate discrepant
expectations about what constitutes good coping or appropriate
goals of treatment, and in the advanced stages of illness, manage
the financial and logistical burden of care while preparing for the
prospect of loss. Researchers and practitioners alike have argued
that the psychosocial impact of cancer should be construed in
relational terms.2 Evidence suggests that couples and families
affected by cancer function as interdependent emotional units,
such that the needs, goals, and emotional responses of patients
and their close partners are highly correlated and mutually influ-
encing.3 As a result, there has been increased interest in applying
family-centered approaches to the psychosocial care of the can-
cer patient. In this chapter, we initially present empirically sup-
ported therapies designed for the couple, followed by an overview
of interventions for the larger family unit.
COUPLE-BASED PSYCHOSOCIAL
INTERVENTIONS
Evidence for the Efficacy of Couple-Based Care
Over the last two decades, there has been a burgeoning literature
on supportive interventions for couples coping with cancer.4 The
predominant approach aims to promote relationship enhance-
ment and/or prevent relationship distress, especially for couples at
the early stages of disease. Badr and Krebs conducted a systematic
review and meta-analysis of randomized controlled trials (RCTs)
testing couple-based interventions in cancer. 5 Couple therapy
interventions showed small but significant benefit across several
dimensions of patient and partner quality of life, with weighted
average effect sizes of 0.250.31 for patients, and 0.210.24 for
partners. The authors observed a predominance of interventions
targeting patients with early stage disease, particularly breast and
prostate cancer. Partners were enlisted either as a co-therapists
assisting in efforts to improve patient adjustment, or as part of
the unit of care itself, and interventions were delivered by masters
level nurses or mental health clinicians. Two additional system-
atic reviews of couple-based interventions in cancer concluded
that there is evidence of overall improvements in couple com-
munication, relationship functioning, and individual distress,4
with effect sizes appearing to be comparable to caregiver-only and
patient-only interventions. The content and efficacy of specific
intervention models are described below.
Early Stage Cancers
In the setting of a cancer diagnosis and initial adjustment to
treatment, the goal of couple therapy is to strengthen relational
competencies (e.g., communication, flexibility, decision-making,
problem-solving) so that patients and their partners feel equipped
to anticipate and metabolize the strain associated with illness.
These models share several characteristics: first, they are deliv-
ered normativelythat is, they are designed to benefit all couples,
regardless of distress level. Second, they lean heavily on didactic
methods, using psycho-educational material and homework exer-
cises to teach skills. Finally, they are typically oriented toward the
reduction of individual-level distress. Thus, aspects of the couples
relationship are construed as either facilitating or aggravating
each individual partners own adjustment. Below we describe spe-
cific interventions for couples affected by early stage breast and
prostate cancers.
Breast Cancer
The CanCOPE intervention was designed for couples facing
early stage breast or gynecological cancers.6 Its major premise is
that a mutually supportive and communicative relationship is a
necessary condition for effective coping. Across seven sessions,
CanCOPE educates couples about the psychological and medical
ramifications of their cancer diagnosis and its treatment. Couples
are trained to use active, problem-solving coping and to monitor
and challenge one anothers negative thoughts about cancer-related

experiences. Couples are taught effective communications strate-
gies, and are encouraged to practice empathic listening, valida-
tion, and self-disclosure about cancer-related concerns. CanCOPE
includes a module for discussing treatment-related changes in
sexual responsiveness, sexual satisfaction, and body image con-
cerns that arise for women diagnosed with breast and gynecologi-
cal cancers. Couples are given relevant educational material and
are instructed in strategies to restore sexual intimacy.
In an RCT comparing CanCOPE to either medical information
only or a patient-only coping intervention, CanCOPE reduced
womens psychological distress and enhanced couples perceived
sexual intimacy. Furthermore, CanCOPE couples were more
likely to engage in communal and mutually supportive coping
when observed discussing cancer-related stress. CanCOPE was
delivered in the home, making it highly accepted by couples (94%
participation), yet attrition was more likely among the distressed
couples. It remains unclear whether the content and format of
CanCOPE would meet the needs of a high-risk population.
Manne and colleagues developed an active coping group (CG)
intervention for couples affected by early stage breast cancer.7
The goal of CG is to reduce the breast cancer patients distress
and improve her well-being by harnessing resources within her
relationship. Weekly group sessions focus on increasing emo-
tional expression, teaching stress management strategies within
the couple (e.g., relaxation exercises), practicing effective cop-
ing and communication skills, enhancing mutual support, and
recognizing the impact of cancer-related changes, both cur-
rently and in the future. An RCT comparing CG to usual care
showed a relative benefit of CG in reducing womens depressive
symptoms up to six months post-treatment. The group format
makes CG more cost-effective than the home-based CanCOPE,
but also more difficult to customize to the particular needs of a
couple.
Kayser developed the Partners in Coping Program (PICP) based
on a model of dyadic coping that recognizes the mutual influence
of one partners coping style on the other partners distress.8 PICP
is delivered to outpatients across nine sessions that occur during
the first year after diagnosis. Like the two prior therapies dis-
cussed, its focus is on helping both patient and partner identify
and improve individual coping styles and communication skills
to promote supportive exchanges. Although there were trends
toward improved functioning for couples receiving PICPpartic-
ularly those with shorter relationship duration and those receiv-
ing chemotherapyan RCT showed no significant differences
between PCIP and standard hospital social work care.9
Two pilot-stage couple-based interventions have focused on
the adaptation and growth of the couple as a unit. Promising
preliminary results were obtained for Baucom and colleagues10
Relationship Enhancement (RE) couples therapy for early stage
breast cancer. RE incorporates elements similar to those previously
described (e.g., communication skills training, enhancement of
problem-solving skills, psycho-education regarding the psycho-
logical, physical, and sexual changes associated with breast cancer
treatment), but in addition, targets the growth and well-being of
the couples relationship. Couples receiving RE showed significant
improvements, relative to usual care, in individual functioning
and perceived relationship quality. Results were sustained one
year post-intervention. Apromising effort comes from Fergus and
colleagues,11 who developed and piloted Couplelinks, a facilitated
Chapter69 couples and families coping with cancer 527
online intervention for young couples facing breast cancer whose
goal is to promote intimacy, relationship awareness, constructive
listening and communication skills, sharing meaning-making in
relation to cancer, and overall positive affect in the relationship
(p.2). This program is novel in its attention to the unique chal-
lenges for young adult couples, and couples reported satisfaction
with the program suggests that it may be a useful medium for pro-
viding dyadic support.
Prostate Cancer
An early source of stress from prostate cancer is the
decision-making process that unfolds as the couple is presented
with numerous treatment options. Davison and colleagues12
included significant others in the delivery of a customized infor-
mation and decision-making support tool for early-stage pros-
tate cancer. This computer-based program was developed to help
healthcare providers tailor the provision of information to the
specific priorities and decision-making styles of patients and their
partners. This decision-making aide reduced distress for both
patients and their partners. Over half of men expressed a prefer-
ence for shared decision-making, whereas the majority of part-
ners preferred a more passive role. Within-couple differences in
decision-making preferences may contribute to the degree of rela-
tional strain experienced during this process.
A couple-focused sexual rehabilitation intervention for patients
with localized prostate cancer and their partners13 educated them
about the sexual impact of surgery or radiation therapy. Couples
were given strategies to improve sexual communication, address
negative beliefs about cancer and sexuality, and increase the
expression of affection in the relationship. In-session and home
exercises (e.g., touching exercises) reinforced skills. Distress was
relieved and sexual functioning improved, although gains were
not maintained six months later. Interestingly, a substantial por-
tion of couples (nearly 40%) withdrew from the therapy, attributed
to either high marital distress, or the explicit discussion of sexual
topics. Perhaps because of its brief and didactic nature, a sexual
rehabilitation intervention may be most suitable for couples who
are already functioning well in their relationship. Couples with
high levels of distress or long-standing marital conflict may need
an intervention that more broadly addresses their relational con-
straints (e.g., poor communication).
The FOCUS intervention, developed by Northouse and col-
leagues,14 is couple-based and designed to impact a broader
array of relational concerns relevant to prostate cancer. Five
core areas targeted are family involvement, optimistic attitude,
coping effectiveness, uncertainty reduction, and symptom man-
agement. FOCUS is similar to other relationship enhancement/
prevention programs in that it uses a supportive-educative
approach to enhance communication, coping, the manage-
ment of uncertainty and self-care strategies. An RCT of this
intervention showed numerous benefits to the spouses of men
with prostate cancer. Spouses demonstrated improved qual-
ity of life, greater self-efficacy in coping and managing symp-
toms, improved communication about illness, reduction in
hopelessness, and a less negative view of their caregiving role.
Benefits to the spouses quality of life were sustained 12months
post-intervention. Patient characteristics, such as his level of
initial distress, or his phase of illness, did not appear to influ-
ence outcomes.
528 Section X evidence-based interventions
Advanced Stage Cancers
Couples coping with advanced illness experience a more pro-
nounced loss of reciprocity in the relationship, as partners are
called upon to serve as caregivers and patients become more
dependent and less functional. As the threat of loss impacts the
couples life, open and responsive communication becomes essen-
tial to sustaining connection and addressing salient end-of-life
concerns, while both partners are able to do so (e.g., identifying
palliative care needs, planning for the future, managing uncer-
tainty and existential distress). Relational processes, such as say-
ing goodbye, spending time with family, resolving conflicts, and
confiding in loved ones, predominate at the end of life. Couples
therapy is well suited to help achieve these goals. The emphasis
on themes of caregiving, anticipated loss, and existential con-
cerns differentiates the support of advanced-stage couples from
early-stage interventions.15 The evidence base for the utility of
couple-based interventions is more limited in palliative care,
where family-centered models have predominated. Theoretical
models guiding couples therapy include attachment theory, equity
theory, and coping and stress appraisal theory. The interventions
discussed below provide promising evidence for the value of a
couple-based approach, but also raise important questions about
the needs of this population.
Northouse adapted the FOCUS program described earlier16
to address appraisal of caregiving, management of uncertainty,
and hopelessness. In-person and home-based sessions delivered
by trained nurses focused on promoting an optimistic attitude,
reducing uncertainty, promoting mutual support and com-
munication among family members, and practicing active cop-
ing strategies. The authors examined dose responsiveness in an
RCT comparing a three-session versus six-session adaptation of
FOCUS, against a control arm.16 Couples who received either ver-
sion of intervention showed reduced avoidant coping, increased
health behaviors, and improved social quality of life, relative to
controls. Furthermore, caregivers in the high-dose group showed
significant improvement in emotional functioning. No dosage
effect emerged, and improved outcomes were not sustained at
six-month follow-up, attributed in part to attrition due to patient
death or increased caregiver demand.
Kuijer and colleagues15 developed an approach addressing ineq-
uities in the caregiving relationship, which has been associated
with greater distress, relationship dissatisfaction, and perceived
burden. Their five-session intervention aims to restore a realistic
balance of supportive exchange so that caregivers perceive more
benefit relative to their investment and patients also perceive more
gains. Sessions focused on creating mutually supportive interac-
tions, targeting both instrumental needs (e.g., patients taking on
manageable self-care tasks) and psychological processes (revising
the patients and partners own standards about how much invest-
ment is possible). An RCT showed improved relationship quality
and reduction in perceptions of inequity for patients and partners,
with greater benefit to the patient.15
Challenges at the End of Life
Couples facing terminal illness struggle with how to continue to
lean on and draw comfort from one another when the threat of
loss is imminent.17 This can be particularly distressing for cou-
ples with limited capacity to comfort each other to begin with.
McLean and Nissim15 adapted the attachment-based intervention
Emotion-Focused Couples therapy (EFT) to address disruptions
in emotional engagement that occur for some facing advanced
cancer. The goal of EFT is to strengthen safety and connectedness,
particularly during periods of vulnerability. Implicit in EFT is
that communication and problem-solving skills will emerge spon-
taneously in the context of safe connection. Sessions help couples
recognize destructive or distancing interaction cycles, and cho-
reograph new ways of interacting that restore closeness and open
emotional expression. An RCT targeting couples with high rela-
tionship distress showed significant improvement in marital func-
tioning for those who participated in the intervention relative to a
control group, with 91% of intervention patients meeting criteria
for clinically significant improvement in marital distress, com-
pared with only 28% of control patients.15 Benefits were evident
up to three months post-treatment, but longer term follow-up was
not obtained. Aprimary limitation to this approach is that it is
more resource-heavy than those described above, requiring more
sessions and therapists with more advanced training in systemic
and experientially based couple therapy techniques.
FAMILY-CENTERED PSYCHOSOCIAL
INTERVENTIONS
Evidence for the Efficacy of Family-Centered Care
A meta-analysis of 29 RCTs offered to family caregivers of cancer
patients revealed small to medium effects, including significantly
reduced caregiver burden, improved coping and self-efficacy,
reduced anxiety, and improved marital and family relationships.18
Knowledge about illness and caregiving can be significantly
increased through information provision (3 studies, n = 103,
Hedgess g=1.36, 95% CI 0.921.77). Amoderate and significant
improvement in coping was evident (10 studies, n=790, g=0.47,
95% CI 0.160.78), while a small yet significant reduction in dis-
tress and anxiety was found (16 studies, n=1,119, g=0.20, 97%
CI 0.080.32). Family relationships were found to improve signifi-
cantly in the three months post-intervention (10 studies, n=840,
g=0.20, 95% CI 0.020.38], while two studies showed enhanced
social functioning beyond six months post-intervention (n=137,
g = 0.39, 95% CI 0.030.74). A higher intervention dose (both
number of sessions and total hours) yielded better results on cop-
ing. Patient and family members reacted as a unit, with synergies
clearly resulting when they are treated as a unit.
Harding and Higginson19 suggested adroitly that support for
caregivers and families needed to focus more on high-risk caregiv-
ers, in the process respecting the resilience present in many fami-
lies, and targeting our limited resources to those most in need.
Continuity of care for the family from palliative care through
bereavement is an admirable goal for any psychosocial care team.
Indeed, bereavement care should not be an add-on after the fact.
Resilience and Family Strengths
In the past decade, the field of family therapy has matured toward
strength-based models of interventiona family resilience
approach.20 This counterbalances the usual mental health ten-
dency to characterize families on the basis of deficit and pathol-
ogy. This resilience model strives to harness areas of competence,
affirm skills, and identify capacities for growth. Viewing any

family through a resilience lens helps to humanize their expe-
rience and to find hope for mastery and reintegration at a time
when families may feel challenged or potentially overwhelmed.
The routine appraisal of a familys strengths as their concerns and
the nature of their functioning are understood will help clinicians
to specifically recognize resilient families. These families accept
and form a belief in their ability to respond to stress. The affirma-
tion of strengths allows services to then focus scarce resources on
those in need.
The Routine Family Meeting
We recognize two tiers of intervention, the first of which is a brief
and focused single family meeting, in which the key dimensions
of family competence and coping are assessed as care needs are
reviewed. Box 69.1 presents guidelines to this basic family meet-
ing. Family members are invited to observe relational patterns
and coping styles. This first meeting has certain general purposes
that are undoubtedly part of routine practice (e.g., introducing the
family to the oncology or palliative care team, providing infor-
mation, reviewing the goals of care, and engaging caretakers in
helping deliver this).21 Additional strategies can be introduced as
appropriate to aid in planning for care of the family as a whole.
This family meeting is an opportunity for the healthcare team
to gain information from the family, but also for the family to
openly acknowledge how they interact and communicate with
one another, what values are prioritized, and which members, if
any, are suffering significant distress.21 For all families, a critical
component of this meeting is the affirmation of family strengths
and resources. The healthcare team can use this time to reassure
well-functioning families that their cohesion, communication,
and conflict resolution (the three Cs of relational life) will prove
to be a great source of mutual support. Likewise, families who
struggle to cope and have greater difficulty working together may
be reminded of aspects of family life that are valued, unique, and
genuinely positive (e.g., caring concern for each other, commit-
ment to the patient).
Screening Families to Identify Those at Risk
of Morbid Outcome
We advocate for the use of routine screening as a tool to gauge the
predominant family environment and to determine any level of
risk facing each family. The Family Relationships Index (FRI)22
has proven to be a reliable and informative screening device that
is minimally intrusive and can be easily administered to patients
and their relatives in the clinical setting.22 Its sensitivity and spec-
ificity in detecting families at risk have been confirmed.23 The FRI
is a feasible and acceptable method of screening, although some
training and facilitation may be needed to integrate screening into
existing practices.
The scale is best used at the time of new admission to the service,
when family members are likely to be accompanying the patient.
Each family member completes the scale independently and with-
out consulting with one another in order to ensure confidential
responses. Additionally, a comment to normalize the divergence
in views among members may help clarify the importance of
obtaining each members perspective. The FRI can be used to
derive scores on three key dimensions of family competence
cohesiveness, communication and conflict resolution. Families
Chapter69 couples and families coping with cancer 529
Box 69.1 Guideline to Conducting a Basic Family Meeting
1. Round of introductions, welcome and putting people at ease
2. Leaders declare their goal of meeting together
A. To review the status of the patients illness
B. To consider the familys needs in care provision
C. To understand more about how the family gets on
D. To aim at optimizing the journey ahead
3. Identify and explore any other agendas that the family
might have; agree on agenda and timetable accordingly
4. Check each family members understanding of the serious-
ness of illness
5. Check each family members understanding of the current
goals of medical care
6. Are there symptoms that are a worry to the patient or
family?
A.Pain or other physical symptoms and related treatment
concerns?
B. Any concerns about nursing or hospice visits? Hygiene?
C.A ny concerns about walking, moving, transferring?
Resources?
D. Any concerns about coping? If so, who?
E. Any needs for respite?
7. Clarify the patients and familys view of what the future
holds:
A. If relevant, has the place of death been discussed?
B. If at home, who from the family will be providing care?
C. If in the hospital, who will accompany? Help? Support?
8. How is the family managing emotionally? Is anyone a con-
cern or do you expect family members to manage satisfacto-
rily? Is there anything we can do to help?
9. Affirm family strengths: commitment, willingness, car-
ing and concern for one another. If concerns exist and are
agreed to, discuss referral for ongoing family therapy.
10. Offer written educational material in accordance with insti-
tutional norms or issues raised at the meeting.
11. Before concluding, are there any questions that you have as
a family?
12. Arrange follow-up care plan and ensure consensus.
are considered to be at risk if one or more respondents score 9 or
less out of 12 on the FRI, or less than 4 on cohesiveness, a particu-
larly sensitive predictor of family outcomes.24 Families in which
at least one member indicates difficulties in family functioning
could be offered the option of additional family meetings as part
of an ongoing program of support. The following is a sample script
used by the practitioner in this scenario:
530 Section X evidence-based interventions
We notice in your questionnaire responses that some of you feel that
an aspect of family lifecommunication, teamwork, or conflictcan
be a challenge at times. Wed like to tell you about some options for
services that try to help families as they strive to support a sick relative.
These services use ongoing meetings like this to support the family...
The screening should supplement, but not replace, a broader
discussion with the family that aims to elicit perceptions of family
functioning and coping. Should maladaptive patterns (e.g., high
conflict, fractured relationships) emerge during this discussion or
from the FRI, the task for psycho-oncology is not to try to solve
these issues there and then, but rather to help synthesize the infor-
mation so that a plan for further support can be established.
Engaging the Family in Focused Family Therapy
Preventive family therapy can be commenced in the setting of
advanced cancer for those families deemed at greater risk and
continued by the clinician into bereavement if the patient dies
subsequently. The Family Focused Grief Therapy (FFGT) model
was developed empirically to optimize coping and mutual family
support during palliative care, and to support the sharing of grief
systemically in bereavement.24 Its efficacy has been demonstrated
in an RCT;25 the greater any relational dysfunction in the family,
the more sessions will likely be needed over the subsequent year
to 18months. Mild family dysfunction will be aided by four to
six sessions, while 1012 sessions will prove necessary for those
at greatest risk.
Using this model, therapists make use of circular questions and
summaries to engage and guide the family toward optimal func-
tioning and mutual support.26 Openness to discussion of death
and dying and early containment of conflict prove beneficial until
improved communication and closeness help family members to
tolerate differences of opinion.
CONCLUSION
Relationship-focused interventions delivered at both the early and
advanced stages of cancer do effectively strengthen the quality of
family relationships and reduce the risk for psychiatric morbid-
ity. Implicit in this is the concept that maladaptive relational pro-
cesses constrain the full coping potential of the patient and the
family as a whole.
The existing evidence base for couple- and family-based psycho-
social interventions within oncology leans heavily on preventive,
psycho-educational approaches. This relationship enhancement/
prevention approach to supporting couples and families can be
delivered normatively, across relatively few sessions, and can be
administered by trained healthcare practitioners of medical and
psychosocial disciplines (e.g., nurse practitioners, psychologists,
social workers). Few interventions target groups at risk for poor
adjustment, whether through high levels of relationship discord
or elevated distress. Although many couples and families describe
supportive relationships, the substantial minority who experience
these as fractured or conflictual are also at higher risk for psycho-
logical morbidity. As described above, a routine family meeting in
which relational functioning is assessed along with the adjustment
of each individual provides an opportunity to identify couples and
families in greater need of supportive services.
A large meta-analytic review of trials comparing family-based
psychosocial interventions for various chronic illnesses with
usual medical care found clear benefits to including a family
member in the psychosocial support of medically ill patients.27
Given the centrality of the intimate relationship in the patients
journey with cancer, future research must strive for a more inte-
grated and evidence-based model that will guide how to best help
families sustain their essential functions in the face of adversity
and anticipated loss.
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 CHAPTER70
Supportive-Expressive and
Other Forms of Group
Psychotherapy in Cancer Care
David W.Kissane and Catherine Ngan
INTRODUCTION
The power of the group lies in the shared experience with oth-
ers dealing with comparable challenges from illness and its treat-
ment, helping each patient to appreciate that they are not alone,
to observe how others are coping, and to consider what will be
most beneficial to his or her own adaptation. Several types of
groups have been studied within oncology:supportive-expressive,
cognitive-behavioral, meaning-centered, multiple couple or fam-
ily groups, and self-help community-based groups. In this chap-
ter, we take supportive-expressive group therapy as the most
evidence-based model to explicate the strategies and techniques
that lead to mature group processes. We summarize the results of
meta-analyses into the efficacy of cancer support groups and con-
sider their contribution to both well-being and survival.
TYPES OF CANCER GROUPS
Supportive-Expressive Group Therapy (SEGT)
The supportive process of the group is central to how benefit is
delivered. The diversity of backgrounds of group members can
strengthen the nature, range, and quality of support, such that
groups can be more powerful than individual therapy in what
they can accomplish. When members share feelings, this expres-
siveness helps set the emotional tone and tenor of the gathering
and mobilizes support. The supportive-expressive group therapy
model (SEGT) is thus understood to be the foundation for all
support groups. In the cancer setting, Yalom saw existential and
therefore meaning-centered themes as omnipresent; his classic
tomes on existential psychotherapy and group therapy gave colos-
sal impetus to the field.1,2
Cognitive-Existential Group Therapy (CEGT)
Cognitive therapy is generally based on an examination of the
thoughts, attitudes, and assumptions that patients carry as their
beliefs to see whether these are truly logical or rational. In the
setting of cancer, it would be illogical to consider some fear of
recurrence as unreasonable. Rather than appraise cognitions for
rationality, the criteria of how realistic? or how reasonable?
have more merit. The cognitive-existential model of group therapy
(CEGT) was developed to not only make explicit the contribution
of thoughts to feelings, but also keep the life-threatening challenges
of the cancer illness in focus at the same time. 3 This approach
brings more emphasis on coping strategies, problem-solving,
communication, and attitudes to relationships, with group mem-
bers assisting each other as therapists invite consideration of these
issues. Various blends of psycho-education, with coping and cog-
nitive therapy components, are of benefit.4
Meaning-Centered Group Therapy (MCGT)
Based on logotherapy as described by Victor Frankl,
meaning-centered group therapy (MCGT) is a psycho-educational
approach to explicating the meaning that people can find in
their lives and places this search for meaning as the foremost
of the existential challenges that cancer patients can confront. 5
It was developed in parallel with revisions of coping theory to
locate meaning-based coping alongside emotion-based and
problem-based coping.6 These three models of group therapy
(SEGT, CEGT, and MCGT) all promote this search for meaning as
a pathway to optimize quality of life.
Self-Help Community Groups
In the 1980s and 1990s, cancer services were slow to provide group
therapy support. Appreciating the benefit and unable to wait for
programmatic development, self-help groups flourished in com-
munity settings across the world as peer-based processes. The
training needs of support group leaders remain important to sus-
tain the quality of the group process.7
Couples Groups
Groups can also be composed of couples and families. Processes of
communication and mutual support can be brought more sharply
into focus when the modeling of adaptive relational processes
within the group helps enhance responsiveness for couples and
families that may not do this naturally.8
 Chapter70
EFFECTS OF GROUPS
Efficacy and Effectiveness
Meta-analyses have examined psychosocial and quality of life
outcomes from group therapy interventions in cancer care. Group
interventions tend to show twice the effect size of individually
delivered therapies:to illustrate, four group-based interventions to
250 men with prostate cancer when compared to 112 controls gen-
erated a standard mean difference (SMD) in general health-related
quality of life (HRQOL) of 0.24 (95% CI: 0.020.47), compared
to five individual-based interventions that were delivered to 541
men compared to 511 controls and generated a non-significant
SMD of 0.11 (-0.060.28).9 Knowledge was also significantly
increased (506 participants, SMD 0.51, 95% CI:0.320.71).9 Again,
group-based interventions showed an SMD in knowledge of 0.68
(95% CI: 0.410.95) compared to individual-based intervention
SMD of 0.35 (95% CI:0.080.62).9
Cochrane collaboration meta-analyses identify the heterogene-
ity of outcome measures as a factor making the appraisal of dif-
ferences in psychological outcomes difficult to discern.10,11 This
contrasts with earlier meta-analytic work that reported small
to medium benefits in reducing anxiety and depression, with
groups again proving equal to or more powerful than individ-
ual therapy.12 Included within the construct of anxiety is fear of
recurrence for patients with early stage cancer.13 Individual ran-
domized controlled trials (RCTs) have demonstrated how group
therapy prevents clinical depression compared to the new onset
of cases of depression among controls.14 While formal RCTs have
delivered benefits in tightly controlled efficacy studies, the extent
of benefit has been weakened by the ceiling effect generated when
all available patients, rather than only distressed patients, have
been included in studies. The discipline has done little work dem-
onstrating the translation of these proven therapies into routine
clinical practice; effectiveness studies in real clinic settings are
greatly needed within psycho-oncology.
Impact of Group Support on Survival
Cochrane collaboration meta-analyses of the overall impact of
group therapy on patients with metastatic breast cancer have
revealed a significant extension of survival at one year (856 par-
ticipants, odds ratio 1.46 [95% CI:1.071.99]), but this failed to be
sustained at five years.10 Amethodological challenge may explain
this finding. Social isolation has been seen to be as powerful a
cause of mortality as smoking and high cholesterol.15 For the 10
leading cancers, married patients are less likely to present with
metastatic disease and more likely to receive definitive anti-cancer
therapies.16 Being single, separated, widowed, or divorced iden-
tifies those at risk of social isolation and especially suitable for
group therapy support. However, none of the group therapy trials
that have focused on survival outcomes has targeted single sub-
jects, with many carrying high rates of married patients, resulting
in a ceiling effect on outcomes that might mask more significant
findings for isolated individuals.17
Social support has also been shown to improve adherence to
medical treatment,18 while non-adherence has been associated
with increased mortality.19 Untreated depression is another mech-
anism that leads to non-adherence to recommended anti-cancer
treatment, with mortality rates in meta-analyses being increased
by clinical depression by 19%39%.20,21 The remaining category
supportive-expressive and group psychotherapy 533
of patients with shorter survival from cancer is socioeconomic
disadvantage or social disparity, even in countries with universal
access to healthcare.22 Health literacy can be improved in group
therapy by increasing knowledge, with meta-analyses above
showing groups (group SMD 0.68 [0.410.95]) to be nearly twice
as successful at this as individual interventions (individual SMD
0.35 [0.080.62]).9 Future trials of group therapy that examine its
impact on survival will thus need to target patients who are single
and potentially isolated, clinically depressed, or socioeconomi-
cally deprived and culturally and linguistically diverse.
FRAMEWORK FOR AGROUP
Although groups have clear benefits to offer, many oncologists,
general practitioners, and other health professionals do not
refer patients to or provide information regarding social sup-
port groups. Doctors and nurses have expressed concerns about
the potential for groups to provide incorrect information, have
negative effects, or encourage unproven therapies. Let us better
understand the SEGT group, initially developed for women with
advanced breast cancer, to avoid such biases, which can limit care
delivery.
Nature and Goals
The goals of SEGT include building relational bonds, expressing
emotions, detoxifying death, redefining lifes purpose and mean-
ing, fortifying families and friends, enhancing doctor-patient rela-
tionships, and improving coping. 23 Homogeneity of disease stage
(early or advanced) is the most crucial criterion in the selection
of membership for cancer groups. They meet weekly for 90 min-
utes, can be closed if time-limited for early-stage disease or, for
advanced-stage disease, be open to new members who can join as
former ones die. Advanced cancer groups can be long-term, with
the myth of continuation countering death anxiety. Nonetheless,
facing the death of a member with open awareness is such a sig-
nificant process that group-as-a-whole mourning can be as pow-
erful as the traditional psychoanalytic termination process. 24
Group numbers of 1012 allow for natural absences with illness
or holidays.
Out-of-group contact is nurtured to foster social support, cre-
ating a boundary issue compared to regular psychotherapy
groups. Therapists do well to monitor such contact, striving to
bring themes discussed back into the therapy room. Predictable
issues arise for the widowed, divorced, or single person if partners
are being invited to functions. Similarly, childless members and
those with very divergent ages or sociodemographic backgrounds
need astute monitoring through which therapists model tolerance
of difference and appropriate involvement of all. Discussions of
complementary therapies, relationship issues, or conflict with a
physician are important for the group as a whole to consider.
Preparation for Running a Group
Therapists should meet individually to hear a patients life nar-
rative and understand any concerns. Box 70.1 outlines questions
that are used to prepare each potential member. Has he or she
attended a self-help group? What was the experience like? Cancer
patients almost invariably fear that the group will prove morbid,
with prominent grief and the burden of others distress. Therapists
do well therefore to describe the groups membership, morale, and
534 Section X evidence-based interventions
Box 70.1 Group Norms or Guidelines (Phrased as a Question by
Leaders) to Facilitate Group Safety
1. Have you been in a group before? What was your experience
like?
2. Do you have any reservations about joining the group?
3. What do you anticipate the group will be like? Any fantasies?
4. What benefits do you hope to gain?
5. Have you thought about the potential morale of a cancer
group?
6. Might there be any rules that could keep the group safe for
you?
7. What sort of confidentiality about your comments would
help you?
8. Do you like to start and finish on time?
9. What sort of notice about planned absences from the group
would help you?
10. What might you think if a person is unexpectedly away
from a session?
11. Whom would you like to call with any apologies for illness
or absence?
12. How important will social gatherings outside the group
room be for you?
13. Have you considered the role that group leaders might adopt
to advantage the group?
14. Whom would you turn to if you found belonging to the
group hard?
15. How long should you commit to attend for before you decide
whether the group process is right for you?
16. Do you have any questions?
17. Are there any practical challenges in attending? Trans
portation? Timing?
spirit during preparation, emphasizing the benefits of support and
connectedness with others who share a comparable cancer jour-
ney. The group should be identified as a safe place to come and be
oneself. Rules need to be stated regarding confidentiality, mutual
respect, starting and finishing on time, commitment to attend
four initial sessions, giving notice about absences, apologies when
ill (including information to allay others anxiety)these all help
to set the tone and protect the therapy, usefully differentiating
what happens in sessions from other levels of socialization within
their communities.
Introducing New Members
The timing of entry into an established group requires care to
ensure that sufficient mourning of the recently deceased has
occurred. Starting two new members together is easier than
introducing a single person. When new members join, mutual
exchange of cancer stories can be fostered. Older group members
may reminisce about their respective beginnings in the group, so
that a new member is reassured that others also found the group
stressful at first. Therapists support for the shy or anxious mem-
ber models acceptance and nurtures a containing environment.
Cultivating a group norm of inclusiveness avoids the phenome-
non of splitting into old and new clusters, which otherwise proves
destructive to cohesion. With effective preparation, dropout rates
are kept to around 10%.24
Commencing a New Group
Groups typically start by sharing stories of cancer and its treat-
ment. Tension easily develops between social chit-chat and the
proper work of a group. There is a difference here between a
member who has recently traveled or witnessed important family
events sharing such newssurely a vital dimension of interper-
sonal connectednessand aimless wanderings in conversation. If
therapists allow the group to engage excessively in chatter, some
members will quickly become bored or frustrated, recognizing
that they can relate to their friends thus at any time. The groups
identity is formed around the shared experience of cancer, and
therapists can safely return to this agenda should a group momen-
tarily lose its way.
Sustaining a Group With Key Existential Themes
A cancer groups agenda is ultimately existential, in which mem-
bers grapple with and face the concerns that arise from the very
givens of existence. Hence a search for meaning, clarification of
role and purpose in life, and a review of what matters transform
the group from a focus on worry, anger, grief, and distress into
the pursuit of authentic living. However, before creativity, happi-
ness, and a genuine joy in life can truly emerge within the group,
death and acceptance of mortality must be acknowledged and
worked through. Groups composed of members with early stage
cancer typically share more worry and fear of recurrence; cog-
nitive approaches prove helpful here. 3 Groups for patients with
advanced cancer display more humor, creativity, and interest in
the genuine pursuit of life.14
The naming of existential ambivalence is fundamental to per-
mitting the emergence of creative living.24 Therapists clarify the
two sides to the predicament, the cost alongside the gain, or the
conflicting wishes about which the person must choose. In so
doing, therapists take care not to dilute the pain or autonomy
of the patient; clarifying the ambivalence is sufficient to invite a
search for an innovative solution.
Within each group for advanced cancer, as some members suc-
ceed with disease control or stabilization, others face progression
and the knowledge that they are drawing steadily closer to death.
Preparation for their death then becomes a worthy project. 23
Tension will be evident between the eternal hope for cure of some
members and an acceptance of reality in others, sometimes stoical
or fatalistic, at other times heroic. Open discussion of death and
dying is an imperative; therapists must accept responsibility for
guiding the group toward this challenging agenda.3,24
The well-functioning group will discuss concerns about both
the process of dying and what it means to be dead. Atherapists
medical knowledge of dying can be invaluable to guide discussion
and foster comfort with death talk. More apt still is the recogni-
tion of ambivalent members who consider talk of death or dying to
be taboo. Provision of sensitive assistance to draw out their fears
and to generate group support proves worthwhile. Longer-term
 Chapter70
members are wonderful allies in sharing memories of the coura-
geous deaths of former participants. The group also provides a safe
place to review conversations with spouses, children, extended
family, and friends as the final farewells begin.
One challenge for longer surviving members (and therapists)
is coping with the cumulative experience of death.24 Across any
five-year period, advanced breast cancer groups can experience
1520 deaths. Patients who joined such a group at its beginning
express survivor guilt at their good fortune. Unless a healthy
adaptation to dying is realized, patients will not tolerate continu-
ing in the group.
Lifes fundamental existential challenges include mourning its
many losses (including death), coping with its essential alone-
ness, discovering meaning in what we do, and responding to free-
dom with responsibility in the choices we make.1 The process of
confronting these challenges has the potential to help the group
mature, transcending the limitations of humanity, grieving loss
and emerging with renewed spirit. This authenticity is evident in
the group through humor, celebrations, assertiveness, the pursuit
of creative activities, loving relationships, and an outward-looking
generosity toward the broader community.24 Therapists must nev-
ertheless reflect on laughter, assessing whether it is a manic defense
against unrecognized ambivalence, or truly signifying confidence
and contentedness. Within the microcosm of the group, caring
for each other is exemplified through transporting sick members
to sessions, providing meals for their family, expressing concern
for relatives, and even remembering each others dates of medical
appointments and tests.
Acceptance of dying with courage is a mature outcome of the
group process. As news of disease progression is shared and frailty
develops, members come to accept their limited future, recall the
heroism of former members, and prepare for their dying with dig-
nity. No greater poignancy is felt within the group than when a
member is describing her preparation for dying, taking leave of
family and friends, creating memories for her children, and say-
ing goodbye.
Termination of a Group
Sometimes for service reasons, realignment of a program, retire-
ment of a therapist, or for want of sufficient members, cancer
groups close. This loss is a metaphor for personal death and
needs to be mourned accordingly. Adequate warning and work-
ing through of related feelings is vital. While the groups myth of
ever-continuing support reinforces each members expectation of
Table70.1 Existential Challenges
Maladaptive Outcomes Existential Challenges
Fear, worry, uncertainty, hopelessness, and anxiety DEATH
Grief and depression LOSS AND CHANGE
Obsessional control, rigidity, or indecisiveness FREEDOM AND CONTROL
Lowered self worth and loss of dignity FRAILTY / DISFIGUREMENT
Isolated, alienated, and alone, unsupported ALONENESS
Demoralized with loss of meaning, pointlessness MEANING
Spiritual doubt and despair MYSTERY
supportive-expressive and group psychotherapy 535
accompaniment unto death, mourning the loss of a group brings
the potential for greater personal maturity. Arisk exists for those
close to deaththat perceived abandonment will increase their
cumulative grief. This risk will be countered by the social support
of survivors, who may continue to meet together, albeit without
therapists. This begs the philosophical question:Can a group ever
fully die?
OTHER THEMES COVERED BY GROUPS
Existential and Spiritual Concerns
Fear of death, uncertainty, and meaning-based coping responses
have been covered above. Table 70.1 summarizes existential
challenges. Groups wonder about the ultimate meaning of life
and often share thoughts about spiritual beliefs and practices.
Religious rituals can be helpful when a member dies, and the
group does well to attend the funeral service. Ambivalence about
this is common, and therapists help by accompanying the group,
thus helping to contain distress through apt sharing and later
review of all that occurred. Respect for members beliefs, whether
agnostic or believing in God, is central. Thoughts about the mys-
tery of life and what may be unknowable, regard for processes of
spiritual transcendence alongside doubt, and support for religious
forms of coping are worth fostering.25
As cancer groups confront and attempt to deal with universal
existential challenges, they potentially oscillate between restric-
tive or maladaptive perspectives and constructive or adaptive
outcomes. Therapists carry the responsibility to help facilitate the
adoption of constructive solutions by the group as a whole.
Health Beliefs
The regular exchange of information about recent medical con-
sultations, results of tests, treatment experiences, side effects, and
progress is the everyday work of a cancer group. Oscillation occurs
between the sharing of grief at bad news back to hope about the out-
come of chemotherapy and continued existence. Therapists can help
the group to discern key health beliefs influencing attitudes toward
treatment.24 Some members will begin in the group with a mindset
against conventional medical therapies. These health beliefs may
have arisen from difficult prior experiences. Appropriate informa-
tion about any potential benefits of a treatment can fall on deaf ears
because side effects are so feared. The group culture can empower
gradual re-education, as members provide alternative information
and model different coping approaches. Acceptance of anti-cancer
Constructive Outcomes
Courage, hope, humor, and living in the here and now
Adaptive mourning leading to renewed creativity
Flexibility, acceptance, and responsibility for self
Dignified sense of self and self-worth
Accompanied and loved by family and friends
Fulfilled by sense of purpose and meaning
Respectful of the sacred and related rituals
536 Section X evidence-based interventions
treatment can emerge with new insight, as the patient adopts the
groups attitude with a fresh confidence.
Only through reasonably detailed knowledge of the disease, its
varied clinical presentations and course, and its potential man-
agement (including relevant indications, side effects, and strate-
gies for ameliorating the latter) can a patient be truly informed to
choose appropriate anti-cancer treatments. For those ambivalent
about anti-cancer treatments, improved compliance is a potential
outcome of SEGT.14 More subtle, but just as relevant, is the emer-
gence of burnout in patients as side effects and length of treat-
ment generate exhaustion, leading them to cease permanently, or
abstain for too long from further chemotherapy. Furthermore,
this same demoralization about the benefits of further treat-
ment can be recognized in the comments of a treating oncologist,
who can be influenced by the patients morale. Group members
fighting to contain the growth of their own cancer prove adept
at recognition of such burnout, offering understanding but also
encouragement to persevere. Such promotion of treatment adher-
ence is a hypothetical mechanism to extend survival, but this, in
turn, is dependent on a health-promoting group culture.24
Fear of Recurrence
For patients with early stage cancer, fear of recurrence is promi-
nent with follow-up imaging, tests, and reviews with their phy-
sician.3 Attention to cognitive distortions involving pessimism,
magnification, catastrophizing, and selective attention to the neg-
ative empower reframing in a more contained and patient man-
ner. Group modeling can be very beneficial here.
Support and Relationships
Issues and concerns about partners, relatives, and friends are com-
mon in cancer groups. The price of connectedness is the pain of
grief at separation, yet the special meaning and joy in life from rela-
tionships both counter existential aloneness and enrich living in the
present. Nevertheless, perceived hurts, affairs and marital break-
downs, concerns about alcohol abuse, conflict over money, rivalries
between childrenindeed, many forms of sufferingappear in the
life of every group. Ambivalence arises commonly from conflict,
hurt, misunderstanding, and difference; its resolution lies in foster-
ing tolerance, forgiveness, and acceptance of a goodness in life that
is sufficient. Personal fulfillment from accomplishment, propor-
tional to each persons opportunity and endeavor, attenuates grief
and promotes the eventual acceptance of dying.
Creativity and Humor
Some group members will be artists, painting the beauty of the
person despite disfiguring surgery; others will write poetry, or
musicians may share their harmony. Community activities such as
participation in public seminars about cancer, dragon boat races
and fields of honor ceremonies, or fundraising through pink rib-
bon sales constitute creative endeavor. In the process, the group
models the pursuit of authentic living. Only when mourning and
ambivalence are dealt with successfully does such creativity emerge.
THERAPIST TECHNIQUES
Therapist Backgrounds
The complexity of cancer care requires psycho-oncologists who
are up to date with these treatments to facilitate groups. Alongside
this, the complex dynamics of the group process, with tensions
between facilitative and restrictive environments, the emergence
of a group-as-a-whole culture, and the requirement for therapists
to monitor and understand the roles and positions that members
take in relation to the group call for therapists trained and experi-
enced in group therapy. Figure 70.1 illustrates how the therapists
monitor the groups thinking and adoption of any solution to the
problems it reflects on. The need for this mix of clinical skills is
partly relieved by the reality of the group as a whole, for rather
than responsibility being vested solely in the therapists (a stance
that would create a dependent group), empowerment of the group
ensures that the membership-at-large takes ownership of its tasks
and processes. The use of a co-therapy couple further advances
this position and enables the development of therapist teams, in
which skill and experience in leading groups can be located in
one partner, with a complementary knowledge of oncology in the
other.
Co-therapy
Compatibility between therapists is crucial. Co-therapists need
to conduct together a pre-group review of sign-posted concerns
(a checklist of issues noted for future sessions) and a post-group
debriefing about the process of therapy. Blending the gender
of co-therapists may be optimal to model the parental image.
Some co-therapists choose to sit together to enhance the image of
a couple, while others prefer to sit opposite each other in easy eye
contact. For breast cancer groups, having co-therapists who are
both women can create the potential for merging with the other
women or for the development of envy at their personal health
and breasts.
Therapist Tasks
Therapists facilitate the work of the group by both asking ques-
tions and summarizing themes. Groups readily avoid discus-
sion of death unless a therapist recognizes this and interprets the
Therapists invite group reflection
about which attitude or solution
the group as a whole might
adopt?
Restrictive
solutions
Constructive
solutions
Figure70.1 The comments of a therapist, whether as a question or a summary,
can helpfully invite the group as a whole to consider whether its ideas form a
constructive or more restrictive and limiting outcome to any situation under
discussion.
 Chapter70
groups avoidant response appropriately. Targeting issues or con-
cerns associated with emotional ambivalence is a promising path
to keeping the group as a whole contained. The therapists can bear
and think about what others might seem unable to. This holding
function permits a transformative process to emerge so that seem-
ingly unthinkable experiences are turned into something bearable
through the mutually reciprocal sharing of the group.24
Therapists are responsible for supporting group norms that will
sustain a holding structure and nurture an enabling culture.
Can the transport of sick members be facilitated? Can a blood test
or scan be arranged to avoid conflict with the groups time? Can
the day for chemotherapy be re-negotiated with the oncologist
so that it doesnt clash with the group? Except for medical crises,
absences have meaning, and therapists run the risk of not recog-
nizing ambivalence if they overcompensate for illness.
Anti-group Phenomena
Negativity to therapists usually emerges subtly, couched perhaps in
criticism of treating oncologists, and is rarely shared openly with
the therapists. When taken up by some group members but not
others, the potential for splitting develops, as conversation about
the lack of understanding of therapists occurs outside the group.
On other occasions, therapists are directly split, one being praised
for kindness while the second is criticized in his or her absence.
Points of tension include a therapists absences from funerals, per-
ceived neglect of the group when attending conferences or taking
holidays, confrontation of difficult members, stylistic differences,
or a relative lack of knowledge about cancer. Envy at therapists
having normal breasts, or normal health, can also lead to angry
members attacking them.
Furthermore, the therapeutic work of cancer groups can be
challenging and difficult. Members are asked to confront their
own mortality and live in the face of it.23 One form of resistance to
this is a counter-challenge to the therapists:Can they face the loss
of their identity as therapists through group members criticism
of their skill and commitment? Do the therapists know what they
are doing in asking so much from group members? Can the thera-
pists face a similar challenge to their self-knowledge and courage?
Key strategies include identifying differences (reframed as diver-
sity) within the group, drawing out expressions of ambivalence,
nurturing inclusiveness and cohesiveness, and facing (rather than
avoiding) existential issues.
When anti-group phenomena are expressed, members with-
draw (unless a strong therapeutic alliance has already been
established), often taking others with them and causing some
fracturing of the membership. Therapists feel they have failed the
group, and if the surviving numbers are few, the viability of the
remaining group is problematic. Sometimes unhealthy memories
of what has occurred make it wiser to start a fresh group, rather
than contaminate new members with an unhelpful past.
Transference and Countertransference
When a group is highly functioning and productive, an idealizing
transference toward its therapists may prove as problematic over
time as a negative transference would when a group is poorly con-
tained. Seeing the therapist as a cancer expert is one example of
this idealizing transference. The task is to reflect cancer-related
questions back for the group as a whole to answer, rather than
therapists beginning to enjoy functioning as experts.
supportive-expressive and group psychotherapy 537
Negative or critical attitudes toward therapists might be left
unstated in the group room, only to emerge destructively away
from the group. Reciprocal negative attitudes by a therapist
toward a group member warrant careful reflection to generate
understanding and avoid a members expulsion. Complacency is
another challenge for a longer-term group, which collaborates well
initially given the universality of the common journey. Alliances
can become too comfortable, repetitiveness appears in stories,
absences develop, and momentum toward transformed living
islost.
CONCLUSION
A key therapeutic goal of group therapy is the establishment of a
high level of cohesiveness, based on mutual regard, tolerance of
difference, and recognition of a shared experience of life. With
its focus on understanding cancer and its treatment, the cancer
group can do much to facilitate adaptive coping, enhance social
support, ameliorate depression and anxiety, and thus enrich qual-
ity of life. Considerable therapeutic skill is needed to help the
group mature and accomplish these outcomes; the benefits are
substantial in optimizing joy, creativity, and the fulfillment found
in a life that is well lived.
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 SECTION XI

Geriatric
Psycho-Oncology

71 The Older Patient 541 73 Functional Assessment of Older

Barbara Given and Charles W.Given Patients with Cancer 554
Martine Extermann
72 Special Considerations in Older Adults
withCancer:What Psycho-Oncologists
ShouldKnow 549
Talia Weiss Wiesel and YesneAlici
 CHAPTER 71
The Older Patient
Barbara Given and Charles W.Given
INTRODUCTION
By 2022 there will be 18million cancer survivors in the United
States, and approximately 63% will be 65 or older.1 Among the
population 65 and older, cancer is the second leading cause of
death, and the incidence of cancer is expected to increase sub-
stantially between 2010 and 2030. These changing demographics
will place new demands on the cancer delivery system.2 The single
largest pay or for healthcare, Medicare and Medicaid, will have
increased stress. It is important to understand cancer and how to
enhance the care of older persons, many of whom may already be
dealing with other health problems. Factors beyond chronological
age must be considered when care decisions are made.3
Older cancer patients face thwe challenge of finding individual-
ized, patient-centered cancer care. Hurria and colleagues indicate
that older patients, even with few or no comorbid conditions, are
less likely to receive treatment with a curative intent, and conse-
quently receive more limited treatment.4
Given the increased life expectancy resulting from improved
treatment of cancer, as well as management of other chronic dis-
ease, cancer and aging are important areas of concern for the
future of healthcare. Physical, cognitive, and emotional decline
issues add to the complexity of care. In this chapter, we discuss
psychosocial areas relevant to cancer and cancer treatment in the
older individual. We also consider biological, psychological, and
social factors related to the complexity of care.
AGING AND PSYCHOSOCIAL ASPECTS
FORCANCER
Aging is associated with a number of molecular, cellular, and
physiological changes that influence the incidence, biology, and
progression of cancer and the patients response to treatment.
Lower maximal heart rate and cardiac output, decreased per-
fusion to the kidneys, poorer creatinine clearance, and, subse-
quently, reduced renal excretion of drugs become important
challenges in treatment.3 The aging lung has lower vital capacity
and decreased tissue elasticity. There is slower gastric emptying,
reduced digestion of proteins, and lowered absorption of amino
acids, decreased protein synthesis, increased concentration of
catabolic cytokines in the circulation, and reduced production
of anabolic hormones.5 There is a decrease in total body water, in
hepatic mass, in blood flow, and an increase in body fat in older
adults. Physiological changes may accentuate cognitive and phys-
ical functional decline. These changes make the older adult vul-
nerable to cancer treatment toxicity and overall poorer response,
including less survival. 6 Myelosuppression due to decreased
bone marrow reserve becomes a common dose-limiting toxicity
among older adults. Limited mobility due to arthritis and osteo-
porosis, falls, and other functional decline add further to the
complexity of care when related to the side effects from treatment
such as weakness, fatigue, or peripheral neuropathy. As Pal and
Hurria indicate, these factors, along with existing comorbidity,
may compromise the ability of the older patient to tolerate cancer
treatment. 3,4 Adding supportive services to tailor treatment and
care will enable patients to receive optimum therapy.
While physiological change and decline occur as part of aging,
older patients are very diverse. The age over 65 is not homoge-
neous; chronological, biological, and functional age must be inde-
pendent considerations when decisions for care are made.
The International Society of Geriatric Oncology (ISGO) and
National Comprehensive Cancer Network (NCCN)7 recommend
that an assessment such as the comprehensive geriatric assessment
(CGA) be completed on individuals 70years of age and older. (See
Chapter73 for a comprehensive discussion of geriatric assessment.)
Patient preferences have an important role in considering decision
options and treatment planning. Hurria and colleagues indicate
that using tools that distinguish among older adults with or without
health status problems, or physiological or psychosocial conditions,
along with patient preferences, is important in the development and
implementation of overall plans for cancer care (Table 71.1).8
Older patients may not present with typical signs and symp-
toms or the side effects from the treatment, especially chemo-
therapy. Symptom management then becomes an important
consideration when the plan of care is determined. Hurria indi-
cates from a survey of 200 older adults that some value function
and quality of life (QOL) more than prolonging life.9 The elderly
may prefer, or at least weigh carefully, aspects of QOL such as
physical comfort, independence, and financial security, as well
as a dignified and peaceful death against longer life in a more
compromised state with dependence on others. These points
should be discussed prior to the initiation of treatment. Using a
tool such as CRASH, which assesses risk for toxicities, can help
guide decisions.10
542 Section XI geriatric psycho-oncology

Table71.1 Assessment Domains Needed for Psychosocial Care

Geriatric Domains Assessment Measurement

Functional Status
Activities of daily life (ADL) and instrumental Relation to life expectancy, functional dependence due ADL, IADL, history of falls, performance battery, use of
activities of daily living (IADL) to symptom distress such as weakness, fatigue, pain cane or devices
Timed up and go
Hand grip testing
Symptom Severity
Relation to treatment on cancer side effects Given symptom experience
Side effects as nausea, vomiting, fatigue, pain, and MDASI
constipation
Comorbidity
Comorbid conditions Number of conditions, relation to functional Comorbid indices, e.g., Charleston
dependence, complexity of care, polypharmacy Katz comorbidity
Cumulative comorbidity scale, comorbidity count,
Medication count, BEERS criteria
Mental and Cognitive Status
Relation of adherence, decisions, communication, Mini-Mental Status, Blessed Orientation Memory Scale,
understanding, participation in interventions, delirium, Folstein Mental Status,
cognition Short Portable Mental Status Questionnaire, Cognitive
Patient preferences Assessment
Emotional Conditions
Depression, anxiety, grief, and loss Relation to survival; adherence, participate in Geriatric Depression Scale (GDS),
interventions, symptom burden HADS (Hospital Anxiety & Depression Scale)
Social Support Status, Social Resources
Relation to institutionalization and mortality Medical outcomes, social support, transportation,
caregiver availability, financial status, living arrangement,
income
Nutritional status
Nutritional assessment Weight loss, symptom, weakness, functioning, anorexia, Weight, Mini-Nutritional Assessment, BMI
vomiting
Geriatric syndromes
Delirium, dementia, depression, falls, Physical functional dependence, mental health, Falls, Geriatric Depression Scale
incontinence, polypharmacy cognitive status, osteoporosis Mental Cognitive Assessment
Medical Content
Includes OTC and complimentary therapy

Adapted from:Dale W, Mohile SG, Eldadah BA, etal. Cancer and Aging Research Group. Biological, clinical, and psychosocial correlates at the interface of cancer and aging research.
JNatl Cancer I. 2012;104(8):581589.

Comorbidity Optimal patient-centered outcomes must extend beyond

Patients with comorbid conditions may experience more serious
side effects that lead to treatment challenges.3,4 Piccirillo and col-
leagues showed that severity of comorbidities affected overall sur-
vival in a dose-dependent fashion, independent of cancer stage.11
Chronic diseases may impact cardiac, renal, pulmonary, and hepatic
function, which limits the patients ability to tolerate cancer treat-
ment. The CIRS-G (Cumulative Illness Rating Scale for Geriatrics)
may be used to determine comorbid conditions. Comorbidity, dis-
ability, frailty, and geriatric syndromes may overlap and are essen-
tial assessment components. This clinical assessment is useful to
organize a treatment plan and can provide benchmarks for obser-
vation and follow-up.
disease-free survival or months of extended life. Continued physi-
cal and social function, comorbidity, and quality of life with a
minimum of side effects and disability are important factors.12
Based on assessments that include comorbidity, functional, cogni-
tive, psychosocial, and social assessment, along with the chemo-
therapy risk assessment, and collaboration among primary care
professionals, geriatricians, and oncologists, patient status can be
determined to select optimal treatment options.4
The three categories used to consider optimal treatment for
older patients include fit, vulnerable, and frail. Fit elderly
are those who are able to receive standard treatment at full dose.
Vulnerable elderly have risk factors but can receive reduced

standard treatment. Frail elderly who have a geriatric syndrome
often cannot receive standard treatment but should receive a tai-
lored supportive care approach to enhance comfort and quality
care. It is important to determine which older patients can ben-
efit from active treatment and which patients may benefit from
supportive or palliative care. Open communication should occur
with patients and their family about their ability to participate in
cancer treatment.12 Observation and effective side effect manage-
ment can help maintain physical function and QOL.13
THE TREATMENT COURSE AND
CARECONSIDERATION
We know little about the response of the older adult to cancer
treatment protocols. The treatment guidelines are often based on
trials in which older adults, especially those over 75, are either
underrepresented or absent. Given the same type and stage of dis-
ease, older patients do not always receive the same cancer treat-
ment as their younger counterparts because of concerns regarding
comorbidity, toxicity, adverse events, limited life expectancy, and
functional status.14 Careful attention and detailed individual-
ized assessment (as outlined in Box 71.1), related to comorbid,
cognitive, emotional, physical, living arrangements, and social
resources, are paramount to effectively tailor treatment. Seymour
and colleagues in a study of 459 elderly and frail patients with
advanced colorectal cancer (mean age 74)used a CGA and then
started with reduced standard dose.13 They showed that with
reduced starting dose, these patients could participate in random-
ized controlled trial (RCT) based on CGA without severe toxicity.
The usual study endpoints of efficacy and toxicity do not ade-
quately address the risks and benefits of cancer treatment for an
older adult. Quality of life, psychosocial and physical functioning,
and subjective patient responses are important outcome consider-
ations.9 Patient preferences for treatment and goals for their cancer
care should be ascertained. Assessments balancing older patients
willingness to tolerate symptoms and late effects of treatment against
their current health status and comorbidity should be determined.
Patient preferences and shared decision-making need to be explic-
itly considered. Jorgensen and colleagues found that for patients
over 65 in areas of health status, QOL, and treatment effects, older
patients preferred less information overall. Sixty percent of patients
wanted information on chemotherapy and 83% wanted involvement
in decision-making.15 Elkin and colleagues found that 66% of physi-
cians had conflicting views of the patient preferences.16
For the older individual who is physically, socially, and cogni-
tively fit and has a life expectancy exceeding five years, estimated
benefits for standard cancer treatment should be considered.
Supportive care approaches should be used to help manage treat-
ment side effects to enable patients to continue treatment.
PSYCHOSOCIAL CARE CONSIDERATIONS
FOR THE OLDER PATIENT
Physical Function
Compromised function leads to an increased need for family care,
additional community resources, or home care to keep patients
independent and able to carry out their daily activities. Fong and
colleagues17 and Speck and colleagues18 in systematic reviews and
meta-analyses found that physical activity of older adults helped
maintain function, psychological outcomes, strength, fatigue
chapter 71 the older patient 543
Box 71.1 NCCN Senior Adult Oncology Practice Guidelines
Screening and Assessment
Assess for risk factors that include comorbidities, geriatric
symptoms, and socioeconomic issues.
Specific issues related to age:
Neurotoxicity
Cardiac
Bone Marrow
Renal
Diarrhea
Anorexia
Mucositis
Comprehensive Geriatric Assessment
Transportation and access barriers
Criteria to define frailty (weight, exhaustion, physical activity,
work time, grip strength)
Assess patients values and goals and determine consistent with
design for therapy
Procedure for functional assessment
Impaired cognitive status risk factor for negative outcome
Vulnerable elderly survey
Careful review for polypharmacy
Disease-specific issues related to age
Under insurance or high out-of-pocket costs for medications
Evaluate adherence to therapy.
Adapted from NCCN Clinical Practice Guidelines in Oncology
(NCCN Guidelines). Senior Adult Oncology v.2.2014. Fort
Washington, PA:National Comprehensive Cancer Network; 2013.
management, distance walked, and QOL. Physical and occupa-
tional therapy to prevent older patients from losing their physical
function may be beneficial.
Prehabilitation as well as rehabilitation, focusing on aerobic
conditioning, balance and gait, and exercise regimens to build
strength and stamina prior to treatment may allow the best chance
of optimal treatment to prevent loss of function.
Psychosocial Function
Psychosocial assessment of patients and their family caregiv-
ers should include determining the psychological status and
social and financial resources available. Overwhelmed and
under-informed individuals may be unable to express their unmet
needs.19 Based on honest and open information about disease and
treatment, professionals determine the patients preferences and
understanding, and respond to them in the selection of treatment.
Information Needs
To make fully informed decisions, patients require treatment
options, information regarding desired outcomes, adverse effects,
544 Section XI geriatric psycho-oncology
and a description of the usual experience of treatment partici-
pation.19 Older cancer patients want to know about symptom
management, residual or late effects, respite care, discharge plan-
ning, survivorship issues, transportation, and involvement of
others in their care. Once patients, families, and the health team
have established parameters for decision-making, a patient- and
family-centered plan for care can be developed.
Given that comorbidity, disability, or geriatric syndromes often
coexist in older adults, and QOL is a priority, revisions of the plan of
care should reoccur throughout the care trajectory. Patients need
to understand the goals of their therapy. Are the goals to improve
survival, to control progression, improve QOL, or to provide sup-
portive care? Unmet psychosocial needs may negatively influence
patient participation in decision-making and adherence with the
cancer treatment. Patients may desire information about their
diagnosis and prognosis without wishing to take an active role in
the decision-making.15 The recommended strategies of teach-back
techniques and frequent learning assessments facilitate commu-
nication by helping patients become informed. Written infor-
mation (taking into account health literacy) compared to verbal
instructions, or web-based information, may be the preference for
older adults. Barriers such as a patients hesitancy to ask questions,
fear of the unknown, or low self-confidence may prevent patients
from expressing their needs or preferences. Nelson and colleagues
found, in a study of older patients with lung cancer, that patients
felt healthcare professionals communicate not at all or a little
bit on emotional needs.20 Romito and colleagues found that 72%
reported the need for better comprehensible information from
doctors and nurses.21 Patients want to talk with individuals near
their age and functional level who have the same illness so they
can hear about their experiences.21
Effective communication with healthcare professionals is chal-
lenging when patients are overwhelmed, under-informed, and
unable to prioritize their own needs. Longer appointments may
be required to discuss useful and available information. Patients
often do not know what services would be helpful to request.
Poor communication may increase patient distress, impair
decision-making, and compromise patient outcomes.
Community Resources
Referral should be an integral part of patient care for those who
need assistance with transportation, home care, chore services,
medical equipment, and/or assistive devices. Mittmann and
colleagues found in an older group of patients with colorec-
tal cancer that use varied with the stage of cancer, and 68% of
them had at least one home care visit. 22 Social workers, naviga-
tors, and discharge planners coordinate the needed community
resources.
Family Caregivers
Family caregivers must be considered as integral partners and
team members as care is planned. Over 80% of cancer care is
provided by family members, and this varies across the trajec-
tory. 23 Caregivers want to be an integral part of the patients
care so that they understand what care is needed. Family
caregivers are a central part of the healthcare infrastructure,
providing extensive patient support and care, yet caregivers
indicate that they receive little guidance or direction on what
care to provide. 24
Cancer centers need programs to support family caregivers
to ensure quality of care. Ascertaining who in the family is the
primary supportive caregiver should occur at the intake assess-
ment and be re-evaluated as care transitions occur. Caregivers
need guidance and information, and more programs are needed
to train and support them.23 Caring needs vary depending on
patient and treatment characteristics. Responsibilities and tasks
change over time and include the following:25,26
Assisting with medication
Monitoring symptoms
Providing transportation
Communicating with professionals
Helping with instrumental activities of daily living (IADL)
Helping with insurance and finances
Making care decisions.
At times, the spouses themselves may be quite ill or dependent,
and other family members will need to become involved.25,26
Professionals should determine the patients resources and
strengths, availability of family support, assess the need for ser-
vices, and develop the care plan with recommendations for care.
The healthcare team may decide to have a family meeting so that
all members understand the patients care situation.
COLLABORATION FOR CANCER
CARE:PRIMARY CARE AND ONCOLOGY
Effective cancer treatment for older patients includes oncologist
collaboration and coordination with primary care and geriatric
professionals in order to select the appropriate therapy and develop
a comprehensive cancer and geriatric plan of care. This allows the
cancer care to be integrated with health maintenance and man-
agement of chronic conditions.27 Considerations should be based
on a current assessment to determine if there are geriatric-related
problems that would prevent the patients ability to tolerate stan-
dard treatment.
Having an interdisciplinary approach to the plan of care can be
a problem, as a survey of 1072 primary care physicians and 1130
medical oncologists reported that 59% of the oncologists and 23%
of the primary care physicians felt primary care physicians could
be prepared to care for cancer patients.28 For the best care, cancer
survivors will require effective collaboration and communication
among providers.
Decision-Making
Older patients may assume a passive role in the treatment
decision-making, while some may favor an active or collaborative
role. Preference for a passive role in treatment decisions may be
more common among older female patients who have less edu-
cation, poorer performance status, or more comorbid illness.19,29
Many older patients will want family members, especially adult
children, to be involved in making decisions. Some may want to
discuss their options with their primary care professionals. 30
Communication
Active communication and interaction about preferences may
help healthcare professionals identify which patients will benefit

most from shared decision-making.15 Whether a patient has hear-
ing issues needs to be determined, as this may affect a patients
communications and decisions.4 Hack and colleagues found that
higher physical functioning and social functioning has been doc-
umented with those patients who are actively involved in their
decisions.31
ASSESSMENT AND MONITORING
DURINGTREATMENT
We next identify major areas for assessment and monitoring that
can guide the care for older patients, including physical function,
psychological health, polypharmacy, symptom experience, social
health, cognitive function, and quality of life. Intervention strate-
gies will be briefly presented.
Physical Function
For many older individuals, the biggest concern is to maintain
independence. Kurtz and colleagues found that older cancer sur-
vivors may suffer from greater impairment in physical function
and health-related quality of life than their younger counter-
parts.32 Older patients are more likely to require assistance with
function. Pre-treatment assessment for the older adult with cancer
includes customary roles, gait, balance and risk for falls, comor-
bidity, mental status (depression, anxiety), and cognitive status.
Pre-existing functional disabilities from comorbid conditions
may be aggravated by side effects from treatment. These include
sleep disruption, fatigue, pain, weakness, or peripheral neuropa-
thy. Creating a safe physical environment in the home is essential
to prevent falls and injury. Assistive devices like canes and walkers
may be needed. Physical therapy or occupational therapy should
be considered to maintain functional status. Prehabilitation and
rehabilitation to return to pre-cancer functional status are an
important consideration.17,18 Home care should be considered.
Nutritional Status
Chemotherapy may result in side effects that negatively impact
nutrition, such as mucositis, diarrhea, nausea, vomiting, or
anorexia. The prevention of poor nutritional status, weight
loss, and sarcopenia should be assured for those in treatment.
Nutritional supplements may be needed. Consultation with a
nutritionist is an important approach.
Psychological Health and Loss
Psychological health problems such as anxiety, depression, and
grief may occur in the older adult with cancer.3,24 Lindin and col-
leagues showed 19% of patients with anxiety in clinical range, and
23% sub-clinical.33 For depression, 13% showed signs of clinical
depression and 17% had sub-clinical thresholds. Patients with
lung, hematological, and gynecological cancer were the most
depressed. Cheng and colleagues found that 87% of older cancer
patients had mood disturbance.34 (See Chapter72 for a compre-
hensive discussion of depression and anxiety management of
older adults.)
Inadequate emotional and social support related to the diag-
nosis and treatment, uncontrolled pain, complications, poor
physical condition, severe side effects, advanced disease, and
previous depression may contribute to lower levels of engage-
ment in self-management, less likelihood of reporting problems,
chapter 71 the older patient 545
and protracted recovery from symptoms. 24,3335 Hamilton and
colleagues35 and Mandelblatt and colleagues36 indicate that
depression in older adults is associated with increased risk for
postoperative morbidity, post-treatment disability, mortality,
increased resource requirements, and need for family caregivers
during the treatment phase.
Cognitive function and the patients capacity to make a deci-
sion are essential to planning care and have been identified as an
important screening component.3,4,5,10 The Blessed Orientation
Memory Concentration Test may be useful. We should deter-
mine the patients cognitive capacity to make decisions based on
information and whether he or she is able to communicate his or
her preferences. Patients choose between quantity and quality of
life and want to retain their cognitive function (see section on
Cognitive Status later in this chapter).
Polypharmacy
Polypharmacy, due to medications for multiple comorbid con-
ditions, may ultimately affect treatment tolerance, side effects,
adverse events, and overall safety. 37 Polypharmacy includes
increased number of medications, inappropriate medications,
underuse, and duplication. Areview of the patients medication
list (medication reconciliation) must be a part of the assessment.
Maggiore and colleagues suggest a careful review of patients lists
of medications, with routine medication reconciliation at all vis-
its.37 Over the counter drugs (OTC), some foods such as grape-
fruit, and dietary supplements or minerals need to be reviewed
with the patients as well to prevent adverse events.
Contributing to the risk of adverse events in the older patient,
with chemotherapy or oral targeted agents, are the changes in
pharmacokinetics and pharmacodynamics that occur due to the
organ changes such as deteriorating kidney or liver function. Two
approaches are used to evaluate potentially inappropriate medica-
tions for older adults:the BEERS and the Medication Appropriate
Index.37
Symptom Experience
Older patients experience symptoms from the disease, from treat-
ment, and from comorbid conditions. They may under-report
symptoms and side effects from cancer treatment because they
attribute them to aging.4 Symptom management interventions
and the prevention of adverse treatment side effects need to
be introduced promptly as patients experience symptoms that
reduce physical activity, or cause infections or cognitive decline.
Immunosuppression leading to anemia or neutropenia, result-
ing from treatment, threatens patients ability to tolerate treat-
ment. Symptom management should be a routine part of care so
patients can continue optimal treatment.4 Hurria and colleagues
showed that in a group of 500 patients (median age 73)a predic-
tive model could establish the risk of chemotherapy side effects
that could be used to plan care.4 Cheng and Yeung found that
the older cancer patients have a high prevalence of pain, fatigue,
weakness, dyspnea, delirium, cough, nausea, vomiting, depres-
sion, anxiety, dry skin, and pruritus due to chemotherapy with
an average of five (3) symptoms during treatment. 34 Due to
the complexity of factors, including comorbid conditions and
altered organ and system deterioration, symptom management
in the older adult requires an interdisciplinary professional team
approach.
546 Section XI geriatric psycho-oncology
The ability of the older patient to express pain (or other symp-
toms) may be impaired by cognitive decline. Uncontrolled pain in
the older adult can lead to anorexia, nausea, insomnia, and fatigue.
Compounding the under-treatment of pain, the pharmacokinet-
ics analgesics, including opioids, may be a problem, causing side
events such as constipation, nausea and vomiting, drowsiness,
neurotoxicity, or respiratory depression.
Symptom distress has been identified by Cheng and Yeung
as the strongest predictor of poor physical and mental function
in older cancer patients. 34 The characteristics and etiology of
symptoms should be determined. The assessment of the symp-
tom status and interference of symptoms on QOL is needed to
optimize the treatment selected and then determine treatment
response.
Social Health Status (Personal and Social Resources)
Older adults are often less likely to have a support system in
placebecause they have relocated, do not have family close by,
or have experienced a loss of spouse and/or friends. Social support
resources are integral to an older cancer patients life experience,
often acting as a buffer against the psychosocial impacts and even
treatment toxicity, as identified by Hurria and colleagues.4 Social
support resources may not be available (living alone) to help with
treatment requirements and affect the patients treatment deci-
sionsfor example, transportation to radiation appointments.
Screening assessments should include questions relevant to older
adultssocial resources, financial stability, caregivers availabil-
ity, and general social support systems. Since the elderly prefer
to communicate with others who have the same diagnosis, pro-
moting peer mentoring could be an approach to enhance patient
social support.
McCorkle and colleagues found that older cancer adults
may need home care during or following treatment. This work
showed that home care helped stabilize patients, and they lived
longer. 38
Cognitive Status
Cancer treatment requires patients to follow complex dosing, rec-
ognize signs of toxicity, and seek help in response to early com-
plications. Cognitive dysfunction affects the ability of patients
to understand the risks and benefits of cancer therapy. Cognitive
and communicative changes alter interactive ability, and may
affect the patients reporting of side effects, as well as the ability
to understand his or her plan of care. Cognitive changes may
affect the ability to follow recommendations or adhere to the
treatment plan, which can result in serious side effects or inef-
fective treatment. Toxic effects such as dehydration, malnutri-
tion, and electrolyte imbalance can increase the risk of cognitive
decline in the older patient. Cognitive assessment will determine
whether the patient has the capacity for decision-making, learn-
ing new information, and the judgment needed to participate in
ongoing care.10,14 New cognitive deficits could imply metastatic
brain disease or drug interactions with medications for their
comorbid diseases. Aaldriks and colleagues showed in 202 can-
cer patients that a worse cognitive score was associated with a
higher probability of not completing chemotherapy regimens. 39
Coping with cognitive decline, therefore, must be a priority con-
sideration for the assessment and management of treatment side
effects. 3
Quality of Life
Concern for QOL plays a critical role in the treatment and side
effects that older patients are willing to accept. Geriatric oncol-
ogists indicate that the ability to function, to daily do what is
important, to cope with changes, and control symptoms are sig-
nificant to patients QOL.3,12
INTERVENTION STRATEGIES
Those older adults who are stable and functional, who have
resources and the ability to recover and cope with the stressors
associated with cancer treatment, when treatment plans take
these factors into account patients are more likely to receive
optimal treatment.9 The assessment information collected by an
interdisciplinary team should establish goals of care and direct
cancer-specific and symptom-specific treatment in light of a
patients existing comorbidities, functional status, and psycho-
logical and social resources. Assessments to identify risks and
manage these risk factors are essential for optimum treatment and
supportive care for symptom management.
There are numerous successful psychosocial interventions for
symptom management to facilitate optimal treatment. As Hurria12
and Hurria and colleagues 40 indicate, the early management of
side effects and symptoms prevents the need for dose reduction or
drug stoppage. This includes the coordination of follow-up care
with supportive resources. Psycho-educational interventions,
which provide information and attend to mental health responses,
are needed for older adults.
Adherence
Adherence may be problematic for patients with multiple comor-
bidities. Side effects from intravenous chemotherapy, such as nau-
sea, vomiting, anorexia, diarrhea, or even cognitive alterations,
may cause challenges for the older adult. Strategies for remem-
bering medications, such as reminder iPhone apps, alarms, or pill
containers, should be considered.41
Nutrition
Nutrition referral should be considered for the older person with
treatment side effects of nausea, vomiting, taste changes, mucosi-
tis, or anorexia. Malnutrition may have a negative effect on treat-
ment response as well as on survival.8 Nutritional supplements
may be assistive. Dental problems may interfere with nutrition in
older patients.
Transportation
For the older adult, access to treatment depends on reliable trans-
portation. The multiple appointments for treatments, scans, and
laboratory work pose challenges for older adults. The plan of care
should consider whether transportation is available on long-term
bases consistent with the expected length of treatment and
follow-up.14 Often there are transportation sources available from
local voluntary organizations and churches, or from area agencies
on aging.
Financial Status
Financial status needs to be considered since older adults may be
on a fixed income.5,8,9,14 Many older adults have limited financial

resources, and this is a period of increasing cancer costs and
increased copayments. Financial assistance such as drug assis-
tance may be needed as part of the care plan.
It is important to understand the components of Medicare
A (important and skilled services), Medicare Part B (doctor
services, physical therapy, occupational therapy and supplies),
Medicare Part C (may be used by some patients), and Medicare
Part D (prescription drug benefit). For patients with treatments
such as oral oncolytics, a copayment portion (which can be very
costly) may be required. Supplemental insurance may be avail-
able. The Affordable Care Act will affect coverage for older adults
with cancer. Healthcare professionals need to discuss the cost of
care.2,14,27
National Comprehensive Cancer Network (NCCN) guidelines
exist for the older adult and provide cancer specific guidelines.7
See Box 71.1 for relevant items from the current NCCN Guidelines
for senior oncology patients.
We need to determine which treatment protocols are acceptable
and which are not. Patients need to be informed of the risks and
potential benefits from treatment and should be actively engaged
in making treatment decisions.9 When treatment is not recom-
mended, patients and their families should be provided with the
guidance and support to receive palliation and supportive care
(the NCCN provides supportive care guidelines). Primary care/
geriatric medical professionals should be participants in the plan
of care.9
Managing the cancer care and providing support of older
patients and their families enables more patients to participate in
optimal cancer treatment while also maintaining their quality of
life.9 As cancer therapy becomes more effective and precise, and
as the number of older persons who participate in cancer treat-
ment increases, geriatric-specific processes of care and outcomes
will become even more important. We need to be ready to provide
this care.
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 CHAPTER 72
Special Considerations in
Older Adults with Cancer
What Psycho-Oncologists Should Know
Talia Weiss Wiesel and Yesne Alici
Cancer is an integral part of the aging phenomenon;1 53% of all
cancer diagnoses are seen among older adults. Additionally, 59%
of all cancer survivors are 65years and older. Around 68% of can-
cer deaths occur among patients 65years and older.1 In 2013, the
Institute of Medicine released a report regarding the delivery of
high-quality cancer care. The report emphasized that addressing
the unique needs of an aging population is critical to improving
the quality of cancer care. Aworkforce trained in geriatric prin-
ciples will be needed to meet the unique needs of older adults with
cancer. Psychosocial care of the older adult presents a significant
challenge for clinicians due to differences in the phenomenology,
assessment, and treatment for this population and the paucity of
research in this area to provide evidence-based guidance to cli-
nicians. This chapter will focus on the assessment and treatment
of common psychiatric issues in elderly patients with cancer.
Delirium, cancer- and treatment-related cognitive changes, and
dementia syndromes are included in different sections of the book
(see Chapters40, 49, and 50)and will therefore not be reviewed in
this chapter.
DEPRESSIVE SPECTRUM DISORDERS
INOLDER ADULTS WITH CANCER
Depression is characterized by feelings of sadness and hopeless-
ness.2 These feelings may be accompanied by irritability, loss
of pleasure, decreased motivation to engage in any pleasurable
activity, reduced concentration, and physical symptoms such as
changes in appetite and sleep patterns, psychomotor disturbances,
or nonspecific complaints of body aches or pains, and fatigue. In
the elderly, somatic symptoms of depression may be more promi-
nent than in younger people. Older adults are less likely to report
feeling depressed or sad. Anhedonia is a more common presenting
symptom than depressed mood among the elderly. The grand-
kid sign is the affective reactivity when talking about grandchil-
dren that goes missing in older adults with depression. The range
of depressive symptoms in the context of cancer varies from sad-
ness to a true major depressive episode, usually mixed with anxi-
ety, and often focused on helplessness related to illness. Physical or
neurovegetative symptoms may be more related to cancer or can-
cer treatment than to depression, though loved ones may think the
patient is depressed when the patient is not eating or sleeping well,
or is fatigued. Depressive disorder due to general medical condi-
tion is common in medically compromised patients whose symp-
toms of depression can be linked to their medical situation (e.g.,
hypothyroidism, left frontal lobe brain metastases) or medications
used (e.g., corticosteroids). Pre-existing depressive disorders may
complicate care, certainly increasing the risk of depression during
the cancer experience.
Older patients, while representing a large and growing pro-
portion of those with cancer, have systematically been under-
represented in research studies. 3 Depression in these older adults
ranges from 17% to 26%.4,5 The presentation of depression in the
elderly frequently appears as minor or subsyndromal depres-
sion, or an adjustment disorder, that is due to a recent challeng-
ing situation, with an estimated rate of 15%25% in medically
ill patients. 6 Kua suggests that as many as a third of elderly
cancer patients may experience some form of psychological dis-
tress.7 Additionally, older age is a risk factor for suicide in cancer
patients.8
Making informed decisions for increasingly complex cancer
treatment options necessitates an intact decision-making capacity
in older cancer patients. Depression can interfere with a patients
decision-making capacity to engage in treatment planning for can-
cer in addition to other morbidities associated with a depression
diagnosis. Understanding the unique nuances and relationships
of depression, cancer, and older age is key to improved diagnosis
and treatment, and ultimately better quality of life and adherence
to cancer treatment regimens.
Although several studies have reported lower rates of depres-
sive disorders in elderly cancer patients compared to younger
ones, this may be because rates of depression are underesti-
mated.9 Older patients do not readily complain of mental symp-
toms. Older patients are more likely to present with somatic
symptoms of depression, or with irritability and anhedonia
rather than depressed mood or sadness. It is not uncommon
for physicians to dismiss depression symptoms as due to old
550 Section XI geriatric psycho-oncology
age. Physical symptoms of depression can overlap withor be
misattributed tothe cancer or treatment side effects and vice
versa. Additionally, common depression diagnostic scales are not
sensitive or specific to older people with cancer. Therefore, the
lower prevalence rates of depression in older adults with cancer
are most likely due to poor recognition of depressive symptoms.
Common symptoms of depression in older adults with cancer are
listed in Box 72.1.
There are a number of physical and emotional risk factors that
can increase risk for depression in older cancer patients. Physical
and biological risk factors such as uncontrolled pain, increased
physical limitations, hearing or vision losses, fatigue, cognitive
decline, medications (e.g., corticosteroids), vascular brain disease,
and certain types of cancers (e.g., pancreas, head and neck, and
lung) have been associated with depression in this patient popula-
tion. Lack of perceived control, loneliness, lack of social support,
grief, financial distress, lower levels of education, and personal or
family history of depression and suicide are some of the psycho-
social risk factors that increase risk of depression in older adults
with cancer.
Assessment of depression in older adults with cancer should
include a thorough assessment of the possible underlying medi-
cal etiologies and medication side effects. Afull cognitive assess-
ment is essential as part of the depression assessment in the
elderly. Delirium, mild cognitive impairment, dementia, grief,
Box 72.1 Common Symptoms of Major Depression in Older
Adults With Cancer
Depressed or irritable mood most of the day, most days, for at
least two weeks.
Decreased interest or pleasure in most activities, including
spending time with grandchildren, not due to physical symp-
toms of cancer (i.e., pain or fatigue), its treatment, or other
medical conditions or treatment.
Somatic complaints such as body aches and pains, and gener-
alized discomfort, may be important indicators of depression
in older patients (these may be difficult to distinguish from
cancer- or aging-related problems).
Feelings
of worthlessness (i.e., feeling like a burden) or exces-
sive, inappropriate guilt.
Suicidality: thoughts of suicide, having a suicide plan, or
ideations about dying, which are relatively more common in
depressed older people with cancer than thoughts of suicide.
Change in appetite or weight not related to cancer or its
treatment.
Change in sleep pattern: insomnia or hypersomnia not
related to cancer or its treatment.
Change in activity:psychomotor agitation or retardation not
related to cancer or its treatment; feeling restless, or feel-
ing slowed down.
Fatigue or loss of energy not related to cancer or its treatment.
Concentration:decreased ability to think or concentrate, or
indecisiveness.
and adjustment disorder are the main diagnoses to be consid-
ered in the differential in older adults presenting with depressive
symptoms.
Depression assessment is incomplete in the absence of a com-
prehensive assessment for suicide risk in the elderly with cancer.
Older patients with cancer are at increased risk of developing sui-
cidal ideation compared to the population at large.10 Furthermore,
the actual suicide completion rates are on average 50% higher in
cancer patients than in a medically healthy population.11,12 It is
important to identify patients at higher relative suicide risk who
have an immediate plan of action as well as intent to carry it out.
Ahistory of prior suicide attempts or a personal or family his-
tory of depression, anxiety, or other mental illness or psychiat-
ric hospitalization increases risk of suicide. It is essential to treat
any underlying conditions that compromise quality of life, such
as pain, fatigue, depression, and anxiety, as they may exacerbate
the patients suicidal thoughts and poor outlook. Delirium, cogni-
tive impairment due to other etiologies, and brain tumors/metas-
tases place patients at higher risk for suicide due to poor impulse
control and disinhibition. If a medically ill inpatient has a high
suicide risk, he or she should immediately be placed under one-to-
one supervision in his or her hospital room, after having removed
potentially harmful devices, such as medications or sharp objects.
These steps will help prevent self-harm. (Readers should refer to
Chapters35 and 38 for a comprehensive review of assessment and
management of psychiatric emergencies and suicidality in cancer
patients.)
The National Comprehensive Cancer Network (NCCN) has
developed guidelines for identifying and treating depression in
cancer patients. Considerations should be given for appropriate
alterations in older cancer patients.13 Table 72.1 provides a sum-
mary of pharmacotherapy options in depressed older adults with
cancer.
Psychosocial interventions play an important role in the
treatment of depressed older adults with cancer. There are a
few interventions specifically tailored to older adults with can-
cer.14 However, several interventions that have proven effective
in community-dwelling older adults and palliative care patients
may be adapted for use in the geriatric oncology setting. The
CARE Intervention (Cancer and Aging:Reflections of Elders) is
one of the interventions that is specifically geared toward reduc-
ing depression, isolation, and despair related to the double
whammy of aging and cancer. The goal of CARE is to foster
relatedness, acceptance of illness, and a sense of meaningful inte-
gration. It is a cognitive-based, six-session intervention. CARE is
grounded in an integration of Susan Folkmans cognitive coping
paradigm, which utilizes reappraisal, and Erik Eriksons eighth
and final psychosocial developmental life stage, in which the task
is to achieve ego integrity (equanimity).15 Preliminary results of a
randomized controlled trial suggest that the CARE Intervention
is feasible and effective in reducing depression, anxiety demoral-
ization, and loneliness among older adults with cancer. Coping
and Communication Support for Older Cancer Patients (CCS)
is a supportive intervention for older advanced stage patients
and their family caregivers. The intervention is delivered by
nurses with mental health training and is delivered by telephone,
e-mail, or clinic visit, according to patient preference. Patients
and caregivers have a 24/7 direct telephone/e-mail access to their
nurse. Patients remain in the intervention until death, and their
 chapter 72 special considerations in older adults 551

Table72.1 Medication Options to Treat Depression in Older Cancer Patients*

Medication Starting Daily Dose (mg PO)** Comments

Serotonin Reuptake Inhibitors (SSRIs)
Citalopram 510 SSRIs are generally well tolerated in the older cancer patient. They may increase
Escitalopram 510 energy but may result in initial anxiety and insomnia. They may be calming but extend
to daytime sleepiness; other side effects include gastric upset and sexual dysfunction.
Fluoxetine 510
Syndrome of inappropriate ADH secretion (SIADH) is more commonly reported in
Paroxetine 510 older adults than depression as a side effect of SSRIs (and many other antidepressants
Sertraline 12.525 from case reports).
Serotonin-Norepinephrine (SNRIs)
Duloxetine 20 SNRIs have similar side effect profiles to SSRIs. They are also used to treat neuropathic
Venlafaxine 25 pain syndromes. Levomilnacipran is a relatively new medication with limited evidence
in older adults. Noradrenergic side effects such as hypertension and tachycardia
Desvenlafaxine 50
should be monitored closely in older adults.
Levomilnacipran 20
Others
Bupropion 100 slow release Bupropion is energizing and can help fatigue. It should be avoided in people with
Mirtazapine 7.515 seizure history, traumatic brain injury, brain tumors, or brain metastases due to
increased risk of seizures. Sexual side effects are uncommon; it is also used as a
Vortioxetine 510
smoking cessation aide.
Vilazodone 510
Mirtazapine has minimal to nil gastric side effects and may improve appetite and
cause weight gain. It can be sedating and aid sleep.
Both of these antidepressants have SSRI and 5HT1a agonist effects. There is minimal
experience with use of these medications in older adults with depression.
Psychostimulants
Dextroamphetamine 2.5 Modafinil and armodafinil are gentler and more easily tolerated stimulants than the
Methylphenidate 2.5 others. They are considered to be safer options for patients with history of seizure
disorders and cardiac arrhythmias. However, comparative efficacy data in older adults
Modafinil/Armodafinil 50
for treatment of depressive symptoms is not available. Abaseline EKG and regular
monitoring for cardiac arrhythmias and hypertension are recommended for older
adults on psychostimulants. Psychostimulants should not be given later than 1p.m.
to prevent insomnia.

* Liquid formulations are available for most of the medications. For smaller dose titrations they may be preferred over capsule or tablet formulations in older adults.
** Starting doses for elderly patients are recommended to be low. However, it is important to increase the doses to a level tolerated by the older adult and a level that is effective for
treatment of depressive symptoms.

caregivers for one or more years to ensure an easy bereavement.16
Improving Mood Promoting Access to Collaborative Treatment
(IMPACT) Program, supportive psychotherapy, cognitive behav-
ioral therapy, and interpersonal psychotherapy are some of the
other psychosocial interventions that have been shown to be
effective in older depressed patients in different settings. Acom-
prehensive review of psychotherapy modalities is available in
Section X of this book.
In summary, depression in older cancer patients can be
a diagnostic dilemma and can lead to under-diagnosis and
under-treatment. Phenomenology differs from younger, healthier
adults. Psycho-oncologists should be aware of coexisting medi-
cal issues and frailty when trying to assess and treat depression.
Given the prevalence of suicide in older cancer patients, clinicians
should be vigilant about screening for suicide in this population.
It is important to note that a number of pharmacological options
and psychotherapy modalities are available for the treatment of
depression in older cancer patients. Therefore, clinicians should
make every effort to treat depressive symptoms in this patient
population.
DEMORALIZATION, DESPAIR, AND
EXISTENTIAL CONCERNS
Older adults, especially those facing end-of-life issues, face a range of
existential concerns, particularly demoralization. Demoralization
refers to a sense of regret over the life one has lived. Kissane defines
demoralization as existential despair, hopelessness, helplessness,
and personal failure.17 Demoralization encompasses a sense of
incompetence, the loss of meaning and purpose in life, and feelings
of social alienation. Demoralization is distinct from depression in
that there is a sense of subjective failure to achieve lifes goals.
In older patients, demoralization is characterized by angst
and is associated with loss of purpose and meaning in ones life,
the loss of relationships, and the loss of some sense of who one
is. These patients typically state, I cant see the point anymore;
theres no reason to go on.17 Factors contributing to the devel-
opment of demoralization in patients of all ages include social
isolation, declining health, disfigurement, disability, dependency,
perceived loss of dignity, concern about being a burden to family,
and increased number of physical problems.17
552 Section XI geriatric psycho-oncology
There is little research specifically focused on older patients
with cancer who are struggling with existential distress. Astudy
looking at changes in and predictors of quality of life in older
patients with cancer over time found that they are in a vulner-
able situation, and have problems in coping with existential issues
six months after diagnosis.18 The most vulnerable older adults
included those with advanced disease and decreased hope. For
many patients, hope and sense of worth are contingent on the abil-
ity to find continued meaning in their day-to-day existence.19 The
prevalence of demoralization occurring in the elderly has been
shown to be double the rate of depression.17 Clinicians should
screen for demoralization in older adults with cancer and uti-
lize psychotherapy modalities developed for the management of
patients with existential distress. (Further review on the assess-
ment and management of existential distress in cancer patients,
including demoralization, is included in Chapter48 of this book.)
ANXIETY IN OLDER ADULTS WITH CANCER
Anxiety, characterized by excessive worry or fear, manifests itself
as a disturbance in mood, thinking, behavior, and physiological
activity for old and young alike. Within the context of cancer,
patients may have anxiety related to fear of death, fears for the
future and family, and loss of control. Some degree of anxiety is
experienced by most cancer patients during their course of illness,
often presenting during crisis points such as initial diagnosis, ini-
tiation of treatment, unsuccessful treatment, and cancer recur-
rence.20 In general, further evaluation is needed when a patients
anxiety persists beyond the immediate time frame of a stressor
and causes impairment in overall functioning.20 Among older
adults with cancer, comorbid medical conditions, frailty, social
isolation, poor social support, and fear of worsening physical
and cognitive functioning may increase vulnerability to anxi-
ety syndromes. Major risk factors for anxiety in older adults are
functional disability, need for assistance with activities of daily
living, poor physical condition, poor eyesight, requiring services
at home, and comorbid medical conditions.21
The prevalence of anxiety increases with advanced stage of dis-
ease, reduced physical function, and worsening frailty. In older
cancer patients, anxiety is commonly associated with depression.
Anxiety disorders in older people with cancer have been over-
looked more than depression as a cause of morbidity; rates with
anxiety range from 2.5% to 23%.4 In a 2011 one-year survey of
239 elderly cancer patients referred for psychiatric consultation
at the Memorial Sloan-Kettering Counseling Center, 5.9% were
diagnosed with an other anxiety disorder and 2.5% were diag-
nosed with an anxiety disorder due to a general medical condition
(GMC).4
Anxiety is a common psychological sequela of cancer, resulting
in decreased adherence to treatment regimens and longer hospi-
tal stays, poor lifestyle behaviors (e.g., substance or tobacco use)
that increase risk factors for developing new medical diseases,
and interference with the ability to make treatment decisions and
adhere to lengthy treatment. Amore serious consequence of anxi-
ety is suicide.
Anxiety can present with both cognitive and physical symptoms
in older adults. Cognitive symptoms may include the following:22
fear of death, loss of control, feeling of impending doom, overgen-
eralizing, and catastrophizing. One qualitative study documented
fear of the unknown and the nature of cancer being unpredictable
as increasing fear in patients:I feel worried about the disease and
it will take time to recover from it, if Iever will. You never know
at my age.23 Another voiced uncertainty:I have had it for four
years, and Iam on constant treatment, and Iusually ask the doc-
tor, how will it end? Another shared his fear of dying:I got scared
when Igot my diagnosis. Cancer is a disease that you have heard a
lot about. They always say that it can only end up in one way. You
die of it. Physical symptoms may include rapid heart rate, rapid
breathing, shortness of breath, increased perspiration, dry mouth,
insomnia, gastrointestinal issues, nausea, trembling, tremor, and
dizziness.22 Physical symptoms of anxiety may be more common
in older adults than the cognitive symptoms of anxiety.
Diagnosis is often made on the basis of a clinical interview; how-
ever, paper and pencil screening tools can be an effective way to
assess anxiety. Screening can be done as a single symptom assess-
ment (e.g., using the Distress Thermometer) or multiple symp-
tom assessments, such as the anxiety subscales on the Memorial
Symptom Assessment Scale (MSAS), the Hospital Anxiety and
Depression Questionnaire (HADS), the Brief Symptom Inventory
(BSI), or the Generalized Anxiety Disorder-7 (GAD-7). Clinicians
can also assess the clinical syndrome (i.e., GAD, panic disorder,
or social phobia disorder), as classified by the Diagnostic and
Statistical Manual of Mental Disorders (fifth edition; DSM-5).
Diagnosing anxiety disorders in the elderly can be challenging
due to the increased likelihood of comorbid medical and psycho-
logical conditions and ongoing pharmacologic treatments that
may obscure the clinical picture.21 At times, patients with under-
lying physiological conditions may appear anxious or may present
with anxiety. In this case it is judicious to address the underlying
cause and to provide education and support.
The underlying causes of anxiety are as follows:
Pain and poor symptom control of fatigue, depression, insom-
nia, dyspnea, and nausea.
Delirium.
Hypoxia or respiratory distress.
Pulmonary embolus.
Sepsis, endocrine abnormalities, hypoglycemia, hypercalcemia,
hyperthyroidism, and hormone-secreting tumors.
Medications (e.g., anti-emetics, corticosteroids, or bronchodila-
tors) and withdrawal from alcohol or benzodiazepines.
The primary goals for management of anxiety in older cancer
patients include reducing the patients anxiety and distress and
improving overall functioning. It is important to recognize the
triggers, presentation, and setting of the anxious symptoms. Other
factors include problematic patient behavior such as treatment
adherence, as well as family and staff reactions to the patients
distress.
Psychotherapeutic treatment options include psycho-education
and cognitive behavioral therapy to gently challenge a patients
automatic, yet unrealistic thoughts that lead to excessive worry-
ing, and to help present a more credible and accurate perspective.
Several behavioral approaches may also be effective in reduc-
ing symptoms of anxiety, such as progressive muscle relaxation
(PMR), breathing exercises, meditation, mindfulness-based
stress reduction (MBSR), hypnosis, biofeedback, systematic

desensitization, exposure and response prevention, distraction,
and guided imagery.24
The pharmacotherapy of anxiety in older adults with cancer
involves the judicious use of antidepressants, benzodiazepines,
and antipsychotics. Although clinical evidence supports the use
of the medications in the treatment of anxiety among older adults
with cancer, randomized controlled trials are required to establish
the risks and benefits of medication use for this patient popula-
tion. Even milder forms of anxiety require attention. Using medi-
cation to treat symptoms of anxiety can be beneficial but should
be approached carefully with elderly patients. In younger patients,
benzodiazepines may be the first line of treatment; however, with
older patients, clinicians may want to try alternative medications
first, such as an antidepressant, yet consider using lower doses of
a benzodiazepine if needed.20 The clinicians should always ini-
tiate medications at least one-half the starting dosesometimes
one-fourth or one-eighth, depending on how frail the patient is
in older adults, review drugdrug interactions, make increases
if needed but gradually, and monitor for side effects closely. The
use of low-dose antipsychotics is common clinical practice for
short-term treatment of severe anxiety symptoms. However, in
older adults, clinicians should consider the risks and benefits of
the use of antipsychotics carefully, especially in patients with
underlying dementia, due to reports of increased mortality and
increased risk of cardiovascular and cerebrovascular events in this
patient population. Adetailed review of pharmacological treat-
ment options for anxiety disorders can be found in Chapter39.
CONCLUSIONS
Psychosocial care of the older adult can be complex due to dif-
ferences in the phenomenology, assessment, and treatment for
this population and the paucity of research in this area to provide
evidence-based guidance to clinicians. Assessment and interven-
tions are available for depression, anxiety, and demoralization.
Older patients with cancer are at increased risk of developing sui-
cidal ideation; it is therefore important to conduct thorough risk
assessments in this patient population.
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 CHAPTER 73
Functional Assessment of
Older Patients with Cancer
Martine Extermann
INTRODUCTION
Age is the strongest risk factor for cancer. The annual risk of can-
cer rises from 1/10,000 at the age of 20 to 1% at the age of 80. As a
result, half of cancers occur beyond the age of 70. The aging tra-
jectory varies considerably from person to person:some remain
healthy to an advanced age, whereas others develop multiple
comorbidities and functional impairments. Since most oncol-
ogy trials are conducted in healthy patients, a proper evaluation
of older patients is necessary to individually tailor the treatment
plan. Patients in good condition should be treated with stan-
dard treatments, whereas frail patients might need treatment
adaptations.
A large body of literature demonstrates that a standard oncol-
ogy assessment is insufficient to adequately estimate the func-
tional reserve of older cancer patients.13 For example, Eastern
Cooperative Group performance status (ECOG PS) underes-
timates the amount of impairment in activities of daily living
(ADL) and instrumental activities of daily living (IADL).4,5
Although most such studies accrued patients over the age of 65
or 70, the findings might even extend to younger patients. Atell-
ing example is a recent article focusing on allogeneic transplant
patients in their fifties, sixties, and seventies. Among those
with a pre-transplant ECOG PS of 0, 28% demonstrated dis-
ability, 58% were pre-frail, and 15% were frail on a comprehen-
sive geriatric assessment (CGA).6 Therefore, instances such as
the International Society of Geriatric Oncology (SIOG), or the
National Comprehensive Cancer Network (NCCN) have inte-
grated in their guidelines the recommendation to conduct a geri-
atric assessment.3,7
Integrating a CGA has three purposes:recognizing and evaluat-
ing unsuspected or under-addressed health problems; prognosis
and prediction of outcomes; and treatment guidance. The present
chapter will focus more closely on the conduct of the assessment
and how to integrate it into clinical practice. Recent systematic
reviews have detailed the characteristics and performance of
various instruments, and SIOG has updated CGA guidelines in
press.13,8,9 We refer the reader to those articles for detailed evalu-
ation of instrument performances. In this chapter we will focus on
the implementation of these findings and their potential impact
on clinical decision-making.
THE TWO-STEP APPROACH
Oncology nowadays is by necessity multidisciplinary. However,
too often this is understood as multiple oncology specialties,
and the resources for broader management of the patient, such
as geriatricians, social workers, psychologists, dietitians, physical
therapists, pharmacists, occupational therapists, and so on, are
underappreciated and understaffed. Therefore, a judicious use of
these professionals requires targeting the patients who will ben-
efit most from their involvement. In the early years of Moffitts
Senior Adult Oncology Program (SAOP), all patients underwent
a multidisciplinary assessment. However, we discovered that for
about half of the patients, this was minimally productive because
they had no geriatric concerns. We and others focused then on a
two-step approach:a short screening by the oncology staff, and a
multidisciplinary evaluation with a CGA for those who screened
positive (Figure 73.1). In the recent years, multiple screening tools
have been tested, mostly by comparison with longer CGA instru-
ments. Few groups have reported their performance in a durable
practice setting. For the past 12years, the SAOP has been using the
SAOP2 screening tool with an excellent face value and a good sen-
sitivity. Overall, such instruments are quick to administer, show
a sensitivity of around 80%, and a very moderate specificity.8 It is
therefore crucial that any positive finding be followed by a geriat-
ric evaluation and not be considered diagnostic (Figure73.1).
PREDICTING OUTCOMES
Beside its obvious role in detecting problems that need being taken
care of in themselves, a CGA provides information that is directly
relevant to cancer management. The prognostic and predictive role
of CGA has been investigated in multiple studies. They were exten-
sively reviewed in the latest SIOG CGA task force paper.3 In sum-
mary, geriatric variables very clearly provide prognostic information
beyond that offered by standard oncology data, such as stage, ECOG
PS, and histologic features. Afirst aspect is the prediction of life
expectancy. This is especially critical in the adjuvant setting or in
diseases with a long natural history, such as low-grade prostate can-
cer. Geriatricians have produced several validated survival estimate
models. These can be used to assess the non-cancer mortality rates
at the one- to nine-year horizon. They are conveniently assembled
 chapter 73 functional assessment of older patients 555

risk of toxicity from chemotherapy (Table 73.1). Such studies

fall into two groups:those which use Common Toxicity Criteria
Step I: evaluate
for Adverse Events (CTCAE) grading as an endpoint; and those
which use chemotherapy feasibility as an endpoint.
Geriatric screening RN In the first group, the Chemotherapy Risk Assessment Score
for High-age patients (CRASH score) combines an assessment of
the toxicity of the chemotherapy regimen, using the MAX2 index,
Negative Positive with patient parameters.14 The score has two subscores:predictors
of grade 4 hematologic toxicity, which are lactate dehydrogenase,
PH diastolic blood pressure, IADLs, and toxicity of the chemother-
MD NP Oncology
Oncology
Workup/setup
Geriatric SW apy regimen; and predictors of grade 34 nonhematologic toxic-
Workup/setup Workup/setup
D ity, which are ECOG PS, Mini-Nutritional Assessment (MNA),
Mini-Mental Status Examination (MMS), and toxicity of the
Integrated regimen. Acombined score can be based on the two subscores.
Treatment plan
Treatment plan
Team meeting The instrument was validated internally and in an independent
sample of patients 70 and older. The Cancer and Aging Research
Group (CARG) score has two versions, one with full geriatric
Figure73.1 Organization of initial CGA in Moffitts SAOP.
instruments, one with individual items, such as age 73years or
over, cancer type, standard dose, poly-chemotherapy, falls in
on the ePrognosis website (http://eprognosis.ucsf.edu/). Another last six months, assistance with IADLs, and decreased social
aspect for which a CGA is useful is to assess the risk of treatment activity.15 It identifies three risk categories for grade 35 toxici-
complications. Surgical groups have worked on determining the ties in patients 65 and older. Both scores were prospectively con-
risk of 30days morbidity/mortality. They identified the key impor- structed in general populations of older cancer patients through
tance of geriatric functional measures such as ADL/IADL, or the multicenter studies. In support of these findings, in the OMEGA
accumulation of geriatric problems.10,11 Predictors for the risk of study, a randomized trial comparing pegylated doxorubicin and
postoperative delirium are also available.12 This is especially impor- capecitabine in metastatic breast cancer patients, 19% of patients
tant, since level 1 evidence exists that the incidence of delirium can without geriatric conditions had a grade 34 toxicity, versus 32%
be reduced.13 Medical oncologists obviously have a strong interest of patients with one, 56% of patients with two, and 80% of patients
in predicting the risk of complications from chemotherapy. Aseries with three or more geriatric conditions (p=0.002).16 In the FFCD
of recent articles has begun to clarify this domain. 2001-02 study, which randomized patients aged 75years and older
with colorectal cancer to FOLFIRI versus 5-FU/leucovorin, the
predictors of grade 34 toxicity were FOLFIRI arm, MMSE score,
Tools Focusing on the Risk of Toxicity and IADL score.17
FromChemotherapy In the second group, the French GERCOR group presented a
In recent years, several prospective studies have assessed the multicenter prospective study in patients aged 75 and older and
usefulness of geriatric instruments in evaluating an individuals assessed predictors of the ability to deliver either three months or

Table73.1 Characteristics of Studies on Geriatric Predictors of Toxicity from Chemotherapy

Parameter Aaldricks CARG Score CRASH Score GERCOR FFCD 20012002 OMEGA
Aim Identify geriatric Identify risk factors Develop a predictive Identify geriatric Identify predictors of Identify geriatric
predictors for Develop a predictive score for severe heme predictors for grade 34 toxicity, predictors of grade
chemotherapy model for grade 35 and non-heme toxicity chemotherapy dose reduction, and 34 toxicity
feasibility toxicity feasibility hospitalization

Number/Age 202 patients > 70y 500 patients 65y 518 patients 70y 516 patients 75y 123 patients >75y 78 patients >65y
Mean 77y Mean 73y Median 75.5y Median 81y Median 80 Median 75.5y
Geriatric MNA, IQCODE, Cancer-specific CGA ECOG PS, MNA, IADLs, 10 items:OLD scale QOL, MMSE, GDS, Charlson, IADL,
assessment MMSE, GFI MD rated KPS Folstein MMSE, GDS, No PS measure IADL #meds, BMI,
CIRS-G, #meds MMSE, GDS, GFI,
frailty index
Adjustment Tumor type and stage Tumor type not included Tumor type and CRC MBC
predictors chosen included stage included
Chemo Tumor type, MAX2- developed a risk Had to receive at 2 regimens 2 regimens
adjustment standard dose, poly/ model for type, dose, and least two-thirds of
monotherapy regimen of chemo chemo dose
Validation Not done Internally x 10 Internally and externally Not done Not done Not done
556 Section XI geriatric psycho-oncology
more of chemotherapy of less than a 33% dose reduction.18 They
found that tumor type, albumin level, and depressed mood were
correlated with the ability to complete chemotherapy. Aaldricks
etal. prospectively assessed a single center cohort of older patients.
The MNA and MMSE scores did correlate with the ability to
receive four cycles or more of chemotherapy. In the colorectal
study mentioned above, the predictors of unexpected hospitaliza-
tion were MMSE score and GDS score.17
Defining Frailty in the Oncology Setting
Defining frailty is a hot topic in geriatrics, and extensive discus-
sions have been held about what the concept represents and how to
best assess it, and multiple instruments are being tested. Geriatric
oncologists have defined their concept of interest more narrowly. Is
there a practical definition that will be good at stratifying patients
in term of cancer and general prognosis and their ability to toler-
ate treatment? This is a rapidly evolving topic, and the limitations
of space in this chapter do not permit a comprehensive discus-
sion, so we will illustrate this point with some examples. We men-
tioned above Kristjanssons comparison of the ability of Frieds
frailty index versus a CGA-based index to predict postoperative
morbidity.11 In another study, Tucci et al. analyzed a prospec-
tive cohort to assess whether CGA could identify elderly patients
with diffuse large cell lymphoma (DLCL) who can be effectively
treated with anthracycline-containing immunochemotherapy.19
Oncologists were left free to judge whether the patients should be
treated with a CHOP-like regimen or a palliative intent regimen.
Oncologists deemed 62/84 patients able to receive a CHOP-like
regimen. According to CGA, 42 (50%) patients were classified
as fit. These patients received curative treatment by clinical
judgment. Their response rate (92.5% vs. 48.8%; p < 0.0001) and
median survival (p < 0.0001) were significantly better than those
of 42 patients considered unfit by CGA. Among unfit patients,
20 received curative and 22 palliative therapy. Their outcome was
similar, irrespective of the type of treatment received (median
survival, 8 vs. 7months; p=NS). The authors concluded that a
comprehensive geriatric assessment is more effective than clini-
cal judgment to identify elderly DLCL patients who benefit from
aggressive therapy. Several studies bolster this type of approach
and should lead within the next couple of years to some converg-
ing and workable definitions of frailty in an oncology setting.
IMPLEMENTING AMULTIDISCIPLINARY
INTERVENTION
This type of study follows essentially two schemes:randomized
trials, or prospective cohort evaluation of the impact of an onco-
geriatric consultation.
Randomized Trials
At the 2006 SIOG conference, Soejono etal. presented the results
of an Indonesian trial of 87 older patients with stage III hepato-
cellular carcinoma randomized to either admission to the geri-
atric ward (which implemented interventions based on a CGA)
or an internal medicine ward.20 At discharge, there was a signifi-
cant improvement in the ability to complete ADLs, as well as an
improvement in pain and quality of life, in patients who received
care in the geriatric ward. Rao and colleagues reported on a sub-
set analysis of older patients with cancer who participated in a
randomized study to evaluate the benefits of geriatric assess-
ment and management units. Among the 99 patients with cancer,
patients randomized to inpatient geriatric assessment and man-
agement units experienced improved pain control and mental
health scores.21
Two randomized studies evaluated the impact of incorporating
elements of a CGA in the outpatient care of older patients with
cancer who had undergone surgery. McCorkle etal. published the
results of a randomized study in which 375 patients (age range
6092) with cancer who had undergone surgery were randomized
to either a one-month home intervention or usual postoperative
care.22 The intervention consisted of home visits and telephone
contact by an advanced-practice nurse, and included an evalu-
ation of the patients functional status, comorbidity, depressive
symptoms, and symptoms of distress. On a stratified log rank
analysis, the patients in the intervention group had an increased
survival at a median follow-up of 44months (p=0.002). ACox
proportional hazard model, adjusted for covariates including
cancer stage and length of hospitalization, demonstrated that the
relative risk of death for the control group was 2.04 (95% CI, 1.33
3.12, p = 0.001). This advantage in survival was evident among
patients with advanced-stage disease (67% intervention group vs.
40% control group alive at two years). The authors suggested that
attention to the needs of patients and family and the monitor-
ing of physical status and offsetting of early complications might
account for this benefit. Another possible hypothesis is that this
short intervention prevented acute deconditioning, which can
lead to a protracted decline in physical function. In a randomized
study, Goodwin etal. assessed the impact of nurse case manage-
ment in the treatment of 335 older women with breast cancer.23
Patients in the intervention arm were more likely to have a return
to normal functioning two months after completion of surgery,
and were more likely to feel that they had a real choice in their
treatment decisions. Women with poor social support derived the
greatest benefit from this intervention.24
Prospective Cohort Studies
A pilot study in older patients after surgery for early breast can-
cer demonstrated that six months of repeated geriatric assess-
ment generated an average of 17 interventions per patient;25 26%
were multidisciplinary, 14% involved the nurse practitioner, 16%
the social worker, 17% the dietitian, and 27% the pharmacist.
Eighty-seven percent of the interventions were deemed success-
ful, with a decrease of indicators such as inadequate medications
or unmet community needs. The mean functional assessment of
cancer treatment-breast (FACT-B) score also improved during the
study.
Chaibi et al. conducted a prospective study investigating the
influence of geriatric consultation with comprehensive geriat-
ric assessment on final therapeutic decision in 161 elderly can-
cer patients. 26 According to the oncologists prior decisions
after oncogeriatric multidisciplinary consultation, there were no
changes in treatment decisions in only 29 patients. Cancer treat-
ment was changed in 79 patients (49%), including delayed therapy
in five patients, less intensive therapy in 29 patients, and more
intensive therapy in 45 patients. Patients for whom the final deci-
sion was delayed or who underwent less intensive therapy had
significantly more frequent severe comorbidities (23/34, p < 0.01)
and dependence for at least one ADL (19/34, p < .01). In this study,

comprehensive geriatric evaluation did significantly influence
treatment decisions in 82% of the studied older cancer patients. In
contrast, a later study27 reported less impact of CGA in the final
treatment decision. Of the 30 patients who underwent CGA, in six
patients the treatment plan was undecided at time of referral. In
five of these, CGA impacted the ultimate decision (83%). Where
the management plan was decided at time of referral (n=24), CGA
impacted the final decision in only one patient (4%). Therefore, the
impact of CGA in informing treatment decisions was modest but
may be of value when the initial treatment decision is uncertain.
The ELCAPA study prospectively followed patients with solid
tumors in a large teaching hospital;28 656 patients were diagnosed
with cancer and had an a priori treatment plan defined. Of these,
392 were referred to a geriatrician, of which 375 were discussed
at a multidisciplinary meeting where the final cancer treatment
plan was decided. Achange from the initial treatment plan was
made in 20.8% of patients. Intensification of treatment was offered
to 10.2% of patients, delay to allow geriatric management in 9%,
and decrease in treatment intensity in 80.8%. The prevalence of
geriatric problems was high. The median number of altered geri-
atric parameters was three in the group without change, and five
in the group with changes. In multivariate analysis, the param-
eters associated with changes in treatment were functional
impairment (OR per 0.5 decrease in ADL score:1.25), and mal-
nutrition (OR 2.99). Trends were also observed for depression
and the number of comorbidities. Changes in the global patient
management were also recommended by the geriatrician:change
in medications (30.7% of patients), social support (41.9%), physi-
cal therapy (41.9%), nutritional care (69.9%), psychological care
(35.7%), memory evaluation (20.8%), and investigations (54.9%).
The authors did not assess what prompted patient referrals to the
geriatrician. In a smaller study of 65 patients, another group noted
that patients referred to a geriatric oncology unit prior to onco-
logic treatment were more likely to have had a recent weight loss
than those referred during treatment (32.3% vs. 15.3%, p=0.03).29
Girre etal. analyzed 105 patients who had been referred to a
geriatric oncology clinic. After the multidisciplinary evaluation,
the original treatment plan was modified in 38.7% of patients.30
This mostly affected patients who planned to receive a treatment
involving chemotherapy, and the main modifications were either
choosing alternative regimens or another treatment strategy.
Kenis et al. conducted a large multicentric cohort study.31 It
included 1967 patients treated in 10 academic and community
centers where both an oncologist and geriatrician were available.
Ageriatric screening tool (the G8) was integrated into the chart,
and 71% of the patients screened positive. On interview within a
month of the visit, 61% of oncologists said they were aware of its
result, and that it identified new geriatric problems in 51% of the
cases (26% with a resulting action) and modified the oncologic
decision in 25% of cases.
CONCLUSIONS
In recent years, there has been clear progress in the assessment of
older cancer patients to guide treatment. First, we demonstrated
that older cancer patients have a high prevalence of geriatric
problems. Researchers then demonstrated that these problems
are significant outcome predictors, independently from the clas-
sic oncology predictors, and therefore contribute additional
chapter 73 functional assessment of older patients 557
information. Research is in progress to summarize this prediction
into decision tools to help manage treatment. Research on inte-
grated oncogeriatric interventions is ongoing. It has so far dem-
onstrated that a CGA modifies management in about a quarter of
cases. Long-term outcome data are still lacking.
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 SECTION XII

Psychological Issues
for the Family

74 A Family-Centered Approach to the 77 Addressing the Needs of Children

Patient with Cancer 561 When a Parent Has Cancer 579
Douglas S.Rait Cynthia W.Moore and Paula K.Rauch
75 Spouse Caregivers of Cancer Patients 567 78 Bereavement:Theory, Clinical Presentation,
Laurel L.Northouse and Ruth McCorkle and Intervention in the Setting
of Cancer Care 585
76 Sexual Minority Health in
Wendy G.Lichtenthal, Holly G.Prigerson,
Psycho-Oncology 574
and David W.Kissane
Youngmee Kim, Matthew J. Loscalzo,
and Karen Clark
 CHAPTER74
AFamily-Centered Approach
to the Patient with Cancer
Douglas S.Rait
INTRODUCTION:FROM
PATIENT-CENTERED CARE TO
FAMILY-CENTERED CARE
The child lies in a bed, her ashen-faced mother sitting beside her,
while her father dozes in a hospital chair. On another floor, an
older man has his blood drawn. His wife winces with the needle
stick, and takes his hand as the nurse finishes the procedure.
Down the hall, a middle-aged woman carefully takes steps down
the hall, dragging her IV pole. On her arm is her son, encourag-
ing her and physically supporting her. Sitting at home, the family
waits quietly for news of the biopsy results.
When Ifirst began to work with patients with cancer, it struck
me as peculiar that consultations and psychological treatment with
patients often did not routinely include conversations with their
families. Like any life-threatening condition, cancer was always
viewed as a personal threat, a solitary experience, the ultimate exis-
tential encounter. So, where were the families? The families were
there. They were there during visiting hours, and they were there
accompanying their loved ones to the clinic. They were there all
the time, shifting uncomfortably by the bedside or in the treatment
room, or at home waiting for the doctors or nurses to communicate
news, trying their best to maintain a brave front. Family members
were there and are always there. They have always been there.
The assumption that family relationships play an important role
in the care and well-being of the cancer patient may be overlooked
simply because it is so universal. Patients live in families, become
sick in families, and receive medical care in families. Indeed, as
Griffin1 has noted, significant aspects of medical treatment even-
tually become the obligation of family members:
...it is the family who must see that procedures are followed sensibly,
that medications are taken, and that diet and rehabilitation programs
are observed. Family members quickly become experts on chronic
illness suffered by one of them, and their daily observations usually
provide reliable data for health professionals in attendance. (p.254)
Traditionally, nurses, social workers, pediatricians, and geriatri-
cians have instinctively recognized the role that family members
play in caring for the person with cancer. This elevated role of the
family as a primary unit of care in oncology settings is now begin-
ning to receive proper attention in medical and psychiatric circles,
and growing evidence also supports the efficacy of family inter-
ventions for patients with cancer.24
It is time for patient-centered care models in psycho-oncology
to actively include family-centered care concepts and practices.
Briefer hospital stays, greater reliance on outpatient care, and the
shift toward patient-centered medical homes have encouraged
new multidiscplinary, team-based, collaborative healthcare prac-
tices that attend to the biomedical and psychosocial challenges
of major health conditions for all family members.3 Patient- and
family-centered care together represent a humane, biopsychoso-
cial approach to the planning, delivery, and evaluation of health
that partners patients, families, and healthcare practitioners,
which can enhance patient and family health outcomes, patient
and staff satisfaction, and cost effectiveness.47
Because medicine and psychiatry have typically concentrated
primarily on the relationships between the patient, his or her
illness, and the treatment, few guidelines are available for the
healthcare professionals reconsideration of the patient in his or
her larger family context. Massie and Holland8 suggested that a
patients ability to manage the stresses associated with serious ill-
ness depends on his or her prior level of emotional adjustment,
understanding of the illness, the threat posed to the patients
capacity to meet age-appropriate goals, the presence of social
and emotional support, and variables determined by the disease.
Although this standard consultation-liaison approach repre-
sents a correct starting point for a thorough assessment, it fails
to account for the individual patients dynamic relationships with
family members and other healthcare providers. In contrast, a
comprehensive assessment of the sick person must account for
these features and expand them to include the broader relation-
ships among patient, family, and treatment setting.9
In order to connect the conceptual framework with practi-
cal recommendations about how healthcare professionals can
approach the patient and family with cancer, it is important to
review three premises that underlie the family-systems perspec-
tive to the patient with cancer:
1. Cancer is a problem that affects both the patient and other fam-
ily members. Research shows that cancer affects couple funtion-
ing and parent-child relationships, which reciprocally influence
the patients experience.
562 Section XII psychological issues for the family
2. The family with cancer is a family in transition, as the illness
presents the patient and family with challenges at every level
of functioning, from practical to existential. Families facing
cancer must strive to maintain stability and, at the same time,
reorganize their habitual patterns of functioning to meet the
challenges produced by the illness.
3. From a family-systems perspective, healthy functioning is
defined both in terms of the adequacy with which essential
family functions are met and the goodness of fit between
patient, family, and medical setting.
From this perspective, the assessment of the individuals emo-
tional resources, cognitive capacities, coping behaviors, develop-
mental stage, illness and course, and treatment therefore represent
the initial building blocks for a broader systemic formulation that
includes, family, friends, and the medical staff. The healthcare
professional begins with a microscopic focus on the individual,
his or her illness, and treatment, and then adds a wide-angle lens
to better perceive the powerful social factors that influence, and
are affected by, the patients experience.
FAMILIES AND THE COURSE OF CANCER
If cancer constituted a single, isolated stressful experience, it
might be handled more easily. However, cancer is a disorder of
change in that the sick person and family must struggle to solve
a series of both generic and idiosyncratic problems posed over the
duration of the illness and its treatment.10 Like all diseases, each
type of malignancy follows a life course of its own, and the stages
of illness and care, in part, define the issues facing the family and
help anticipate points of expected psychological distress. Each
stage is associated with practical and psychosocial tasks that fam-
ily members must face and master. These transition points include
medical workup and diagnosis, sudden changes in medical status,
modifications in treatment, re-entry to daily life, recurrence of ill-
ness, and death and bereavement. The clinical course of cancer
can also be condensed into three broader stages:acute, chronic,
and resolution.
Acute Stage
The initial disclosure of cancer in the family is a shattering event.
Family members need to deal with the patients pain and inca-
pacitation, form a system of emotional support for the patient, and
oversee the patients transition into a medical culture that can feel
inhospitable and unresponsive. Rolland10 highlights the impor-
tant existential issues that family members face, including griev-
ing what has been lost, finding meaning in the crisis that allows
for the preservation of individual and family competency, and
accepting a position of maximum ambiguity while maintaining a
sense of hope and continuity.
Couples and families confronting the diagnosis of cancer typi-
cally lack time to anticipate and prepare, experience little sense of
control, and feel a great sense of shock, loss, and anger.11 However,
just as diagnosis poses a serious threat to the familys normal pat-
terns of behavior, crisis can also rally the strengths and resources
within the family unit. In the acute stage, many families orga-
nize closely around the ill person, effectively buffering the patient
from intrusive medical procedures, the discomforts associated
with treatment, and the patients own experience of uncertainty.
Because the early stage of treatment is largely defined by the unfa-
miliar environment and customs of the medical setting, family
members may experience feelings of helplessness and confusion.
Their lack of comfort and control may be compounded as medi-
cal staff and hospital system assume authority over the patients
welfare, and family members may feel excluded from the focus of
care. To promote a working alliance among patient, family, and
medical team, an open exchange of information among patient,
family members, and medical staff is especially important during
the early stages of treatment.
Chronic Stage
Different issues characterize the chronic stage, consisting of the
patients return home, extended treatment, lengthy hospitaliza-
tions, or periods of remission. During this time, the family must
find ways to meet the immediate needs of the patient while sup-
porting the growth of other family members. Both the patient and
family members must shift gears and move from a crisis-oriented
repsonse to one that supports the ongoing social, emotional, and
economic functioning of the patient as well as all family members.
At the same time, the practical realities of long-term care emerge,
as strains on finances, time, and other resources take their toll.12
During this stage, the sick persons illness continues to organize
and regulate family life. Most family members report that they
never fully relax during this period and remain perpetually in a
state of readiness for any emergency. Expected changes in roles
and family organization, in part, depend on the sick persons for-
mer position in the family and capacity to rejoin the family in that
role. If he or she can return to school or work, the disruptions may
be reduced. However, if the patient requires regular care that dis-
rupts work or study, family responsibilities may need temporary
or permanent reshuffling to compensate for the patients changed
status. Many family members experience caregiver strain due to
the pile-up of practical demands and emotional support required
by the sick family member.
Resolution Stage
The central task for the family when the patient successfully com-
pletes treatment involves their capacity to fully reintegrate the sick
person into the world of health and normal functioning. As the
patient faces forward and enters survivorship, the anxiety asso-
ciated with the chronic stage may remain, yet it is often dimin-
ished. Accustomed to the special care they have received, some
patients may experience difficulty relinquishing their patient
status and returning to the demands of school, work, and normal
family responsibilities. The family must therefore make arrange-
ments to include this member in former roles or provide room for
the assumption of new roles within the family.
If the illness enters the end stage and the patient is terminal,
the family is faced with a crisis marked by loss and disintegration.
There is no greater problem for the family than death or threat-
ened death, in that it sends an emotional shock wave through-
out the family. In some families, this final stage elicits heroic last
efforts to save the patient by any means. In others, the news of
imminent death prompts the beginning of a process of gradual
distancing and denial. Families often require significant support
as the patient enters palliative care. For example, they may find
it difficult to discuss a members dying, and may make efforts

to protect each other from emotional distress.13 However, these
protective measures can backfire, leaving the patient and family
members isolated from one another as death approaches.
Minuchin and Minuchin14 offer a four-step paradigm for under-
standing family transitions to sickness and disability, identifying
(1)a period of stability in which the family operates in a paterned,
balanced fashion; (2)a challenge to this pattern by the illness; (3)a
period of exploration in which the family searches for and experi-
ments with different ways of responding to the change; and (4)an
eventual re-equilibration of the family to a more stable, adaptive
pattern of functioning. From this perspective, the individuals and
familys responses to cancer can be viewed as efforts to master a
crisis, or a series of crises, and to restore order in the face of con-
tinual life threat, rather than signs of incipient psychopathology.
DIMENSIONS OF FAMILY ADAPTATION
TOCANCER
Given the enormity of the challenge, the family facing cancer must
adapt to continual change and transition over the course of the ill-
ness and its treatment. The reserves of the family will be severely
taxed, and these stresses will differ depending on the family com-
petency in dealing with the medical system, their resources, and
the availability of and reliance on social support. The success of
the particular familys response to cancer may be reflected in their
ability to carefully assess what is happening, explore and evalu-
ate alternatives, and generate flexible coping strategies at each step
along the way.
Each family should be approached as a unique cultural system
that is influenced by ethnicity, race, religion, and social class,
as well as the members immediate social context. To develop a
clinically meaningful picture of a familys response to medical ill-
ness, four additional dimensions of family-systems functioning
should be evaluated:family developmental level, family history,
family relationships, and the familys relationship with healthcare
providers.15,16 Difficulties in functioning emerge when problems
in any of these interrelated domains function to keep the family
from fulfilling the important task of attending to the needs of the
sick person without impeding the growth of other family mem-
bers. The goal of a family-systems assessment is to account for the
salience of these potential factors and to then generate a kinetic
understanding of the patient in his or her social context.
Imagine this family, for example, in which Kathleen, a
48-year-old mother of two, is diagnosed with breast cancer. She
undergoes a total mastectomy, followed by chemotherapy. She
has been married for 22years to Nate, a successful, hard-working
attorney. They have a solid relationship, but during the past sev-
eral years, things havent felt as close as they once did. Because
of the demands of treatment, Kathleen decides that it is best to
leave her job of 20years teaching at the local middle school. After
all, her son William is heading off to college, so having more time
together with her family seems desirable given her condition.
Soon after William does leave home in the fall, her daughter Kelly
begins to struggle at school. She feels increasingly panicky about
assignments, procrastinates, and only hands her work in to her
teachers intermittently. Both Kelly and Nate are alarmed. Nate
sees it as a phase, whereas Kathleen believes that Kelly is wor-
ried that she will die from her cancer and that she feels lonely now
that her brother has departed for school.
Chapter74 a family-centered approach 563
Family Developmental Level
It is difficult to overestimate the importance of identifying the
familys developmental stage. Like the individual, the family is
not static. Healthcare professionals can begin to recognize nor-
mal family developmental tasks and transitions, beginning with
couple formation and ending with death, that couples and families
routinely encounter. They soon appreciate that both centripetal
(couple formation, marriage, birth of a child, birth of grandchil-
dren, death) and centrifugal stages (going to school, adolescence,
leaving home) occur and recur throughout the family life cycle,
presenting new challenges that require the family to reorganize
at each step.
At each stage, a realignment of relationships is required to sup-
port the entry, departure, and social-emotional development of
family members. Stressors, such as cancer, during any of these
stages may interfere with the accomplishment of normal devel-
opmental tasks, and the more the illness is out of step with the
familys life course, the greater the potential distress.10 For exam-
ple, cancer in a 78-year-old grandfather carries a different impact
and meaning from the same disease in a 48-year-old mother or
her 18-year-old son. Grandfathers illness does not constitute an
unexpected departure from the natural order of life, although it
still exerts considerable impact on the family.
In Kathleens family, her illness occurs during a developmentally
centrifugal period when the adolescent children are naturally
moving away from the family and focusing on their own inde-
pendent lives (see Table 74.1). However, the diagnosis of cancer,
itself a centripetal event, may pull them back into the family and
potentially derail their normal separation process. While William
has left home for college and appears to be successfully making his
way, Kelly has experienced anxiety and academic challenges since
the school year began.
Family History
At the time of diagnosis and throughout treatment, patients and
their families bring with them lifetimes of experience that provide
the blueprints for their present responses to illness. For example,
family histories may provide important clues about the etiology of
particular assumptions held by family members about serious ill-
ness and its prognosis, trust in the healthcare system, beliefs about
Table74.1 Family Life Cycle
Centripetal Stages Centrifugal Stages
Marriage
Birth of first child
Family with young children
Child enters elementary school
School-aged children
Entry into adolescence
Leaving home
Birth of grandchildren
Retirement and older age
Dying and death
Reprinted with permission from:Rait D, Glick I. A model for reintegrating family therapy
training in psychiatric residency programs. Acad Psychiat. 2008;32:8186.
564 Section XII psychological issues for the family
Cancer
survivor
72
52
Lawyer,
mountaineer
College
18
freshman
Figure74.1 Genogram showing family with a symptomatic daughter.Reprinted with permission from:Rait D, Glick I. A model for reintegrating family therapy training
in psychiatric residency programs. Acad Psychiat. 2008;32:8186.
caregiving, and approaches to authority. The family-centered
healthcare professional can collect and organize this historical
data through the use of a genogram, a three-generational family
tree depicting the familys patterns regarding either specific prob-
lems or general family functioning.
The genogram technique lets history speak by suggesting
possible connections between present family events and the prior
experiences that family members have shared (e.g., regarding the
management of serious illnesses, losses, and other critical transi-
tions). The genogram is a useful tool because a picture is worth a
thousand words, and family-oriented clinicians soon recognize
its value in efficiently gathering family historical information
visually rather than in the traditional narrative form.
A quick review of Kathleens genogram reveals that family
members on her side of the family had good reason to worry about
Kathleen (see Figure 74.1). Sadly, her own mother died at age 50
from metastatic breast cancer, and her older brothersuffering
from a long-standing depressionhad recently taken his own life.
Optimism about Kathleens prognosis was in short supply. Neither
her father nor her brother showed much hope. On the other hand,
Nates family, naturally resilient, saw Kathleens cancer as an
obstacle to overcome, a mountain to climb. Nates mother had sur-
vived thyroid cancer and melanoma, and she felt that having the
right kind of attitude would help Kathleen prevail. Nate, in turn,
tried to buoy his wifes spirits by remaining upbeat and positive.
Kelly, though, showed elevated anxiety, was distracted, and began
to uncharacteristically fail two classes.
Family Relationships
Every family has its own signature patterns of interaction. Some
families are emotionally close, reactive to subtle changes in
patient status or medical decision-making, and always involved
in the patients care. We think of these families as having a more
enmeshed family style.17 Family relationships in disengaged
Died at 50
(metastalic
Retired breast
physician cancer)
78
Died
at 52 34
(suicide)
Retired
teacher 48
with
breast
cancer
16 Panic attacks/
school failure
families tend to be more formal and distant, and family members
are less emotionally reactive. Communication styles within these
types of families differ dramatically. Some members emerge as
spokespeople and ardent advocates, while others avoid confron-
tation. Yet, tasks must be accomplished. In healthy families, the
basic roles and functions necessary for family adaptation are typi-
cally carried out by different subgroups within the family, such
as the couple, siblings, or whoever happens to be available at the
moment. Optimal interactions among members are characterized
by their range and flexibility. However, Minuchin and Minuchin11
observe that when families are under stress and must explore
a change in functioning, even viable families may move toward
patterns that are not optimal, overshooting in the direction of
their dominant style (p.11). In other words, when serious illness
invades and influences the family system, family members may
find themselves relating to one another in an extreme fashion, and
rigidly dysfunctional patterns can emerge.
Despite her own treatment, Kathleen was beside herself with
worry about Kellys worsening symptoms. She worried that her
daughter, always a good student, might be developing a depres-
sion, like Kathleens brothers condition. Mother and daugh-
ter would spend evenings working on homework together, and
Nate noted that he and his wife were sharing less and less time
together. Kellys anxiety became so severe during a three-week
period that her mother began to sleep with her at night. Nate was
disapproving and, over time, he began to feel increasingly mar-
ginalized by this new arrangement (see Figure 74.2). Their tie was
unbreakable, and he was the third wheel. William was excited
about school, and not much of a communicator, and Nate began
to feel lonelier and more resentful. As a result, Nate and Kathleen
became increasingly isolated from one another at an important
time when connection, communication, and closeness may have
been more beneficial to their relationship as both spouses and
parents.

Father Mother
Daughter
Figure74.2 Structural map showing same family in therapy.Reprinted with
permission from:Rait D, Glick I. A model for reintegrating family therapy training
in psychiatric residency programs. Acad Psychiat. 2008;32:8186.
Relationships with Healthcare Providers
Just as the family provides the immediate context for the patient,
the treatment setting forms the immediate context for the family
facing serious illness. The culture of modern medicine has pro-
moted the development of an intimidating array of professionals
ready to handle every aspect of a patients care (e.g., physicians
of every specialty, nurses, radiology technicians, phlebotomists,
dietitians, physical therapists, clergy, aides). When medical care is
smooth and coordinated, family members value its predictability.
However, when care breaks down and becomes fragmented, fam-
ily members find themselves more anxious and frustrated.
In Kathleens case, her trusted oncologist went on mater-
nity leave during the course of her treatment, and Kathleen was
assigned to a colleague with whom she felt less comfortable.
Because Nate had withdrawn over time and had stopped attend-
ing appointments with her, Kathleen became the sole point per-
son in her care. She began to feel more depressed, worrying about
her prognosis, her marriage, and her daughter.
The central goal for the family-oriented provider is to identify
both normative and idiosyncratic points of intervention and to
develop a flexible system of support for the sick person and the
family in the context of their specific setting (e.g., hospital, home,
clinic, hospice). McDaniel, Doherty, and Hepworth18 recommend
that healthcare professionals intentionally facilitate this collabo-
ration between primary treaters, the patient, and the family. Their
multi-tiered model of family-centered care proposes differ-
ent levels of involvement among providers and family members,
ranging from showing a minimal emphasis on the family, offer-
ing ongoing medical information and advice, eliciting feelings
and providing support, conducting systematic assessment and
planned intervention, and engaging in actual family therapy.20 At
the very least, multidisicplinary teams organized to provide col-
laborative, integrative care highlight the importance of systems of
care that include family members.1820
By forming a collaborative alliance with the family, focusing
on family patterns that support successful adaptation to the ill-
ness and treatment, and sensitively considering the systemic
background that includes the familys developmental stage, his-
tory, and culture, the mental health professional can devise
family-centered interventions that highlight the familys strengths
Chapter74 a family-centered approach 565
Box 74.1 Thinking Family and Working Systemically
Join with the family.
Focus on patterns and process rather than content.
Consider family developmental stage, history, and culture.
Identify family structure.
Devise systemic interventions that encourage systemic/struc-
tural change.
Support the couple/family and highlight their strengths.
Reprinted with permission from:Rait D, Glick I. A model for
reintegrating family therapy training in psychiatric residency
programs. Acad Psychiat. 2008;32:8186.
and comptencies. Patient-centered thinking can always be supple-
mented by thinking family (see Box 74.1).
In facing a serious illness such as cancer, Sargent 21 argues
that family members are caught in their circumstances, invari-
ably caring, competent, and always changing. Fortunately, in
Kathleens case, her new physician recognized her discomfort
and increased worry about her family situation. Apsychologist
in the clinic invited Nate to join Kathleen for a family meeting,
and although Nate was wary, he agreed to come. The therapist
took a detailed history, constructed a family genogram, noted
and addressed the couples growing distance, and offered sub-
sequent meetings that would help them both better manage the
cancer experience while providing support and practical inter-
ventions for Kelly, who continued to struggle both at home and
in school.
In the sessions that followed, Kathleen and Nate were able
to examine the isolation they had each been feeling in their
marriage, discuss their joint fears about Kathleens illness, and
build new bridges in their parenting relationship. With Kelly,
they were able to develop constructive solutions that rapidly
reduced her anxiety and school issues. A growing body of
research has demonstrated that involving family members in
psychosocial cancer care is beneficial, suggesting that including
family members can become a natural reflex for psychosocial
treaters in all oncology settings. 22 For Kathleen, re-engaging
Nate in her care was the first step toward addressing the fam-
ilys circumstances as a systemic whole, rather than in discrete
pieces.
CONCLUSIONS
This chapter has highlighted the importance of the family as
the principal context of health, illness, and medical care in
psycho-oncology. The patients family is viewed as a system in
transition because the diagnosis and treatment of disease presents
many challenges that can profoundly alter the lives of each family
member. Families facing cancer must strive to preserve stability
while adapting to their changed circumstances. Patient-centered
clinicians can benefit from thinking family and considering
the cancer patients family developmental stage, family history,
and current family relationships in their assessment. In addition,
examining the familys relationship with healthcare providers in
the treatment setting can often be beneficial.
566 Section XII psychological issues for the family
By expanding patient-centered care to include family-centered
care, clinicians will be doing many of their patients a service. In the
end, most of us live, get sick, receive treatment, recover, and die in
the presence of our families. By partnering with patients and their
families, involving family members in healthcare decisions, and
asking for their help and insights, a broader system of support can
be constructed that can potentially yield more informed health
decisions and improved health outcomes. As Lewis23 reminds us,
In the days of biological reductionism... it is easy to forget that
life is lived in relationships, and the quality of those relationships
has much to do with how life turns out. So, where are the fami-
lies? The families are always there. They have always been there.
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1. Griffin JQ. Physical illness in the family. In:Miller JR, Janosik EH,
eds. Family-Focused Care. NewYork:McGraw-Hill; 1980.
2. Zaider, TI, Kissane, DW. Psychosocial interventions for couples and
families coping with cancer. In:Holland JC, Breitbart WS, Jacobsen
PB; Lederberg MS, Loscalzo McCorkle R, eds. Psycho-Oncology, 2nd
ed. NewYork:Oxford University Press; 2010:483487.
3. Johnson BH. Family-centered care:four decades of progress. Fam
Syst Health. 2000;18(2):137156.
4. Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW.
Interventions with family caregivers of cancer patients:Meta-analysis
of randomized trials. CA:Cancer J Clin. 2010; 60:317339.
5. Campbell TL. The effectiveness of family interventions for physical
disorders. J Marital Fam Ther. 2003;29:263281.
6. Kuo DZ, Houtrow AJ, Kuhlthau KA, Simmons JM, Neff JM.
Family-centered care:current applications and future directions in
pediatric health care. Matern Child Hlth J. 2012;16(2):297305.
7. Rait D, Glick I. Reintegrating family therapy training in psychiatric
residency programs:making the case. Acad Psychiat. 2008;32:7680.
8. Massie M, Holland J. Consultation and liaison issues in cancer care.
Psychiat Med. 1988; 5:343359.
9. Rait D, Lederberg M. The family of the cancer patient. In:Holland
JC, Rowland J, eds. Handbook of Psycho-Oncology:Psychological
Care of the Patient With Cancer. NewYork:Oxford University Press;
1989:585597.
10. Rolland, JS. Chronic illness and the family life cycle. In:
Carter E, McGoldrick M, eds. The Expanded Family Life
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Boston:Allyn & Bacon; 2009.
11. Hagedoorn M, Sanderman R, Bolks HN, Tuinstra J, Coyne JC.
Distress in couples coping with cancer:a meta-analysis and critical
review of role and gender effects. Psychol Bull. 2008;134(1):130.
12. Feldstein MA, Rait D. Family assessment in oncology settings.
Cancer Nurs. 1992;15:161172.
13. Kissane DW, McKenzie M, McKenzie DP, Forbes A, ONeill I, Bloch
S. Psychosocial morbidity associated with patterns of family func-
tioning in palliative care:baseline data from the Family Focused
Grief Therapy controlled trial. Palliat Med. 2003; 17(6):527537.
14. Minuchin S, Minuchin P, Family as a context for patient care.
In:Bernstein L, Grieco A, Dete M, eds. Primary Care in the Home
Setting. NewYork:Lippincott; 1987:8394.
15. Feldstein M, Rait D. Family assessment in an oncology setting.
Cancer Nurs. 1992;15:161172.
16. Rait D, Glick I. A model for reintegrating family therapy training in
psychiatric residency programs. Acad Psychiat. 2008;32:8186.
17. Minuchin S. Families and Family Therapy. Cambridge, MA:Harvard
University Press; 1974.
18. McDaniel S, Doherty W, Hepworth J. Medical Family Therapy and
Integrated Care, 2nd ed. Washington, DC:American Psychological
Association Press; 2013.
19. McDaniel SH, Campbell TL, Hepworth J, Lorenz A. Family-Oriented
Primary Care. NewYork:Springer Publishing; 2005.
20. Doherty W, McDaniel S, Baird M. Five levels of primary care/behav-
ioral healthcare collaboration. Behav Healthc Tom. 1996;10(5):2527.
21. Sargent J. Physician-family therapist collaboration:children with
medical problems. Fam Syst Med. 1985; 3:454465.
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eficial to involve a family member? a meta-analysis of psychosocial
interventions for chronic illness. Health Psychol. 2004;23(6):599611.
23. Lewis J. Repairing the bond in important relationships:a dynamic for
personality maturation. Am J Psychiat. 2000;157:13751378.
 CHAPTER75
Spouse Caregivers of
Cancer Patients
Laurel L.Northouse and Ruth McCorkle
Over the past two decades, the role of family caregivers has
become essential as treatment for adults with cancer has shifted
to outpatient facilities and patients survive longer with active dis-
ease. Spouses are most often the primary caregivers to people with
cancer,1 and although they receive little or no preparation, spouses
are consumed with patient responsibilities, such as assistance
with activities of daily living, medication administration, physi-
cal care, emotional support, transportation, and household man-
agement. Historically, spouse caregivers have played a major role
in providing care; however, the level of technical, psychological,
and physical support currently demanded of caregivers is unprec-
edented. Too often the responsibility for complex care resides with
spouse caregivers, without regard for their resources or skills to
provide the care. Spouse caregivers have become the extension of
the healthcare team in the home. They are being asked to perform
clinical care tasks that well-trained health professionals would
have provided previously.2
As the demands of caregiving increase, spouses experience a
number of physical, mental, and social consequences, which may
exceed those of their ill partners.1,35 There is concern not only for
the mental and physical well-being of spouse caregivers, but also
for their ability to provide complex care when their own health
is compromised. Studies indicate that when spouse caregivers are
highly distressed, cancer patients report more problems adjusting
to the illness over time.6 In light of the essential role of spouses
and the multiple care demands they face, it is important to under-
stand their experiences and identify ways to help them.
This chapter focuses on spouses as primary caregivers to people
with cancer. The chapter begins with a discussion of the interde-
pendence of patients and spouses and the reciprocal effect they
have on one another. We discuss the common needs of spouse
caregivers, as well intervention studies that have been conducted
to address their needs. The chapter concludes with directions for
future research.
INTERDEPENDENCE OF PATIENTS
ANDSPOUSES
One of the unique aspects of the patientspouse relationship is the
partners interdependence on one another as they cope with the
demands of cancer. Patients and spouses share the same household,
the same resources, and rely on one another for emotional and
instrumental support. When one partner is diagnosed with can-
cer, both partners experience stress associated with the illness. In
a recent meta-analysis, Hagedoorn and colleagues7 examined 46
studies of cancer patients and their spouses to determine to what
extent they influence one another during the cancer experience.
They found a moderate significant relationship (r=.29) between
the emotional distress of patients and their spouses. On the basis
of these findings, the researchers concluded that couples react to
cancer as an emotional system; each partner affects the other (see
Figure 75.1). Recent research by Dorros and colleagues8 indicates
that the reciprocal relationship extends to couples physical dis-
tress as well as their emotional distress. Hagedoorn etal. found
that the reciprocal relationship within couples was evident across
various types of cancer and stages of cancer. They also found that
couples who are coping with cancer reported moderate levels of
distress, and that their distress was significantly higher than cou-
ples without cancer or community samples.
The interdependence of cancer patients and their spouses is
evident in many other aspects of the illness, such as dealing with
changing family roles, managing symptoms, and maintaining the
familys quality of life.1 Spouses often assume the responsibilities
of ill partners, which can help to maintain family function, but
can also lead to spouses role overload. Research indicates that as
the number of illness-related demands increase, spouses are at
greater risk of developing depression.9
The concept of caregiver burden (i.e., the distress that caregivers
feel as a result of providing care) is closely related to the interde-
pendence that exists between patients and their spouses. Caregiver
burden increases when patients report more symptom distress or
have trouble meeting their basic needs. 3,10 It also increases when
Patient Spouse
Each partner affects the other
Figure75.1 Reciprocal relationship between cancer patients and spouses
emotional distress.
568 Section XII psychological issues for the family
Table75.1 Caregiver Burden and Hours of Care in United States
Levels of Caregiver Hours of Caregiving Percent of Caregivers
Burden Per Week atEach Level*
1 3.5 hours 33%
2 9.8 hours 17%
3 12.0 hours 15%
4 33.1 hours 21%
5 87.2 hours 10%
* Missing data accounted for 4%.
Source:National Alliance of Caregiving, AARP. Caregiving in the U.S. 2004.
spouses need to provide more hours of care or a higher intensity
of care. In a national study of caregivers of patients with chronic
disease, five levels of caregiver burden have been identified11 (see
Table 75.1). The level of burden was based on an index derived
from the number and types of care provided, as well as the num-
ber of hours of care provided. The levels of burden increased as
the intensity and the hours of care increased. At the highest level
of burden (Level 5), the majority of caregivers were women (71%),
many of the caregivers rated their own health as fair or poor, and
they were likely to say that caregiving made their health worse.11
These findings underscore the interrelationship between caregiver
burden and caregiver well-being. Spouses of cancer patients are
vulnerable to caregiver burden because of their primary caregiv-
ing role, and because their lives are so intertwined with the lives
of their ill partners.
COMMON NEEDS OF SPOUSE CAREGIVERS
There have been a number of reviews identifying the needs of
caregivers beginning in the 1980s; the majority of respondents
in these reports were spouses. In the mid-1990s, participants
were expanded to include a broader base of caregivers, includ-
ing siblings, parents, and other relatives or friends. As the field
has grown, these reviews have targeted caregivers of patients with
specific sites of cancer. (See our chapter in the previous edition of
this book, which identifies seven of these early review articles.)12
Out of these reviews came consistent documentation of the needs
associated with caring for a member with cancer.
Information
The majority of caregivers report that they need more information
in order to provide care to their loved ones with cancer.13 Spouses
search for information can be extensive, as they use many sources
for obtaining information, including the Internet. Spouses want
information about specific treatments, the expected course of
care, traditional as well as alternative approaches to treatment, the
ways to manage symptoms, and which community resources are
available. However, nearly half of the caregivers of cancer patients
in a large study said they did not receive the information or train-
ing they needed to administer medications or manage patients
symptoms and side effects.2 Caregivers also lack confidence on
how to deal with the emotional aspects of the illness2 and want
more information on patients expected emotional recovery and
ways to deal with anxiety and depression. Table 75.2 indicates that
spouses needs for information extend over the course of illness
and can vary from one phase to another.
Spouses report more uncertainty about the cancer patients ill-
ness than patients themselves;14 this may be due in part to spouses
limited information and lack of regular contact with health pro-
fessionals. In addition, child care or work responsibilities can limit
spouses availability to attend clinic appointments and get first-
hand information. Spouses who are able to attend clinic appoint-
ments often find that the appointments are brief or rushed, with
little time for questions. Furthermore, some providers direct their
comments primarily to patients, leaving little opportunity for
spouses to ask their questions.
A number of strategies have been identified to help spouses to
obtain information. These include encouraging spouses to attend
clinic appointments or consultation sessions, bringing a list of
questions to clinic visits, and telephoning office nurses with addi-
tional questions. There are also websites available through major
organizations such as the American Cancer Society, the National
Cancer Institute, Cancercare.org, and the Cancer Support
Community. In the future, web-based programs are likely to
increase because they will be able to reach more patients and their
spouses at a lower cost and they will be able to provide informa-
tion tailored to the specific needs of patients, spouses, and their
dyadic relationship.
Support
Spouse caregivers also need support. For the most part, spouses
needs for support have been overlooked as professionals and oth-
ers focused solely on the support needs of patients. Spouses were
perceived to be immune to the effects of cancer since they were
well and patients were sick. To some extent, this perception was
reinforced by early descriptive studies in which spouses ranked
their own needs as less important than patients needs.
Studies that compared the support perceived by patients and
spouses found that spouses consistently perceived less support
from friends and professionals, even though their own levels of
emotional distress were similar to or even higher than patients
distress.14,15 Spouses report less support than patients across
all phases of illness, including the advanced phase, when the
demands of illness are especially high.14,15 Some spouses report
feeling angry with professionals because of the lack of support
they perceive from health professionals. This is not surprising
since the spouses needs for support have been documented for
many years, and there is still no widely accepted clinical guideline
that professionals can use to identify caregivers needs and pro-
vide them with support.
There is evidence across numerous studies that spouses of can-
cer patients benefit from both emotional and instrumental support
from others. Spouses with more support report a higher quality of
life,1 less emotional distress, less fear of cancer recurrence,1 and
greater post-traumatic growth.16 In light of the positive benefits of
support, the challenge for health professionals is to find systematic
ways to provide support to spouses, as well as to patients, in busy
healthcare settings.
Communication
Effective communication, especially with their ill partners, is
another need of spouse caregivers. Cancer patients often consider
spouses to be their primary confidants. However, communicating
 Chapter75 spouse caregivers of cancer patients 569

Table75.2 Information Needs of Cancer Patients and Spouses Over the Course of Illness

Diagnostic Phase Hospital Phase
Type and purpose of
diagnostic procedures that
will be performed
When test results can be
expected
The person who is
coordinating the care
Common emotions that
develop while awaiting
diagnosis (e.g. anxiety,
uncertainty)
How to talk to people
about the diagnosis
Making treatment
decisions, pros/cons of
options
Treatment Phase
Type of surgery planned
When pathology report will
be available
Expected length of
hospitalization and time to
recover
Role limitations to anticipate
when patient is discharged
The effects of illness on
other family members
Concerns about pain and
other common symptoms
Survivorship Phase
Type and length of
treatments planned
Anticipated side effects and
when they may occur
Ways to reduce side effects
Likelihood of temporary
role changes
Availability of education,
support groups, and
community resources
How and who to talk
with about the patients
or spouses unresolved
concerns
When follow-up Type of treatment planned
examinations or tests are
necessary
Common concerns during
this phase (e.g. fear of
recurrence)
Importance of balancing
needs of patient and family
Availability of education,
support groups, and
community resources
Adjusting to a new
self-image
Working after cancer
treatment, financial issues
Recurrent Phase
Anticipated side effects,
when they may occur, and
ways to manage them
Common feelings during
this phase (e.g. uncertainty,
sadness, fear, growth)
Ways to maintain hope
regardless of recurrence
Availability of support
groups and community
resources

about cancer can be difficult for several reasons. Partners may have
different styles of communication or preferences for disclosure, or
partners may hold erroneous beliefs that discussing fears about
cancer can hinder the patients adjustment. Some partners, espe-
cially caregivers, engage in protective buffering to hide feelings
from one another.17 Other couples may respond to one another in
a critical or an insensitive manner that hinders open communica-
tion about the illness.
Although communicating about the illness is complex and can
be difficult, effective communication has been associated with a
number of benefits for cancer patients and their spouses. More
open communication has been associated with higher relation-
ship satisfaction,18 greater intimacy,18 less use of cancer-related
avoidance,18 and higher quality of life.15 Health professionals can
facilitate effective communication among couples by providing
information to both partners at the same time, and by offering
them opportunities to discuss difficult issues in the presence of
a health professional. Professionals also can be role models to
couples by demonstrating open, honest, respectful, and support-
ive communication as patients and spouses discuss their feelings.
Also, including spouses in interventions offered to patients, and
educating them about the negative consequences of criticism, may
help to reduce negative interactions among patients and spouses.
Encouraging spouses to use support groups or telephone support
services such as Cancer Care, or to talk with friends who are also
dealing with cancer, also may facilitate more open communication.
Effective Coping
Spouses as well as patients need effective strategies for coping with
the stress of cancer. In general, the use of active coping strategies
such as problem-solving, positive reframing, planning, and accep-
tance have been associated with higher quality of life in caregivers,
while avoidant strategies such as denial, behavioral disengage-
ment, and uses of drugs and alcohol have been related to lower
quality of life19 and higher anxiety and depression in caregivers.20
A recent longitudinal analysis indicated that spouses of cancer
patients used avoidant rather than active coping to deal with their
own symptom distress (e.g., fatigue, pain).19 In this study, spouses
of prostate cancer patients, who had higher symptom distress of
their own, had a tendency to deny or minimize their own symp-
toms over time. This pattern of coping was associated with lower
mental quality of life in spouses at eight-months follow-up, and
could eventually lead to spouses poorer physical quality of life
over time.
Research indicates that spouses also need to use more active
coping strategies to manage the tension that cancer creates in
marital relationships.21 In a qualitative study, couples coping with
breast cancer said they needed better ways to be together as a cou-
ple instead of just being a couple with cancer. Findings from this
study indicated that these couples wanted relief from the cancer
and needed help learning new ways to cope with cancer and enjoy
one another.
Self-Efficacy
Spouses also need self-efficacy, or confidence in their ability to
provide care for their ill partner with cancer. Spouses are often
expected to provide complex care, but do not have the skills to
do so. Too often skill-enhancement programs focus on building
patients skills rather than spouses skills.22 Spouses need confi-
dence in their ability to provide emotional support as well as phys-
ical care.23 Keefe and colleagues found that three-fourths of the
caregivers (most were spouses) reported low or moderate efficacy
to manage patients cancer pain.24
Research indicates that caregivers who report more self-efficacy
have less strain, have more positive moods, and their ill fam-
ily members have higher physical well-being.24 In a longitudi-
nal study, Kershaw and colleagues found that self-efficacy had
far-reaching effects on patients and their spouse caregivers.
Spouses with higher caregiver self-efficacy at baseline reported
less negative appraisal of caregiving, hopelessness, and uncer-
tainty at four-months follow-up, and those spouses had better
mental quality of life at eight-months follow-up.19
Closely related to the concept of self-efficacy is the concept of
preparedness, or perceived readiness to provide care. Over 50% of
570 Section XII psychological issues for the family
spouse caregivers of prostate cancer patients in one study reported
feeling unprepared for their caregiving role.23 Schumacher and
colleagues examined preparedness and mutuality (e.g., positive
relationship quality) among adult caregivers (mostly spouses) of
cancer patients. They found that caregivers who felt more pre-
pared for their caregiving role had more vigor, less fatigue, and
higher overall mood scores.25
Self-Management
Spouses also need to engage in self-management to maintain
their health. Self-management takes place in the context of the
family and refers to the activities that people engage in to address
the medical and emotional management of their health.26 For the
most part, spouse caregivers direct nearly all of their time and
attention to caring for their loved one with cancer. They spend
little time attending to their own physical and mental health,
which can have negative consequences for them. In a study of
Australian caregivers (mostly spouses), over half (56%) reported
a negative change in their health following patients diagnosis of
ovarian cancer.27 Forty-two percent reported a decrease in physi-
cal activity, 35% gained weight, and 12% increased their alcohol
intake. The more that caregiving interfered with their day-to-day
schedule, the more caregivers experienced negative effects on
their lifestyle behaviors and weight. In a recent population-based
study, researchers in Sweden found that spouses of cancer patients
were at greater risk of developing heart disease and stroke than
were people without an affected spouse, possibly due to the stress
of caregiving. 28 These studies suggest that spouses of cancer
patients may be at risk for poorer health outcomes and need to
utilize active self-management strategies to maintain their own
health.
INTERVENTIONS TO HELP SPOUSE
CAREGIVERS
As the number of randomized clinical trials (RCTs) with patients
and their caregivers increased during the past 15years, research-
ers were able to conduct meta-analyses of multiple studies to
determine the effects of these interventions on patient and care-
giver outcomes. Three meta-analyses2931 examined RCTs con-
ducted with patients who had various types of chronic illness
(some with cancer) and their caregivers, and one meta-analysis
examined RCTs with cancer patients and their caregivers or with
caregivers alone.32 Although the types of chronic illnesses and
outcomes measured varied across the meta-analyses, a number
of positive outcomes were identified for intervention participants
versus controls.
Positive outcomes for caregivers found in the meta-analyses
included less caregiver burden, 2932 less depression,2931 more
knowledge, 29,32 and less anxiety or distress. 29,32 In addition,
caregivers of cancer patients also had better coping, higher
self-efficacy, better marital and family relationships, and better
physical functioning.32 Of the three meta-analyses that examined
patient outcomes, positive outcomes for patients included fewer
symptoms, 29,31 better physical health, 31 better mental health, 31
and lower mortality. 30 These meta-analyses provide strong evi-
dence that dyadic interventions offered to patients and their care-
givers or to caregivers alone can result in many important, positive
outcomes for patients, spouses, and other family caregivers.
Interventions With Cancer Patients
andCaregivers:Single Studies
In addition to the meta-analyses, review of individual studies spe-
cifically in the cancer literature revealed varied results and an array
of outcomes. The studies are categorized into four broad interven-
tion areas:(1)supportive-educative, (2)caregiving skills/symptom
management, (3)coping skills, and (4)relationship-focused inter-
ventions. These are not necessarily discrete categories because
some interventions address more than one area.
Supportive-Educative Interventions
In view of patients and spouses common needs for support and
information, it is no surprise that the majority of interventions
are supportive-educative or psycho-educational interventions.
These interventions have produced a variety of positive outcomes,
whether offered to patients and spouses jointly, or to spouses alone.
Most commonly reported outcomes of these interventions are less
emotional distress or improved quality of life in patients and/or
partners,3338 increased caregiver self-efficacy, 34,36,37,39 increased
rewards of caregiving,40,41 and better coping.37,41,42 Other positive
outcomes (but reported less often) are improved caregiver physi-
cal well-being or health, 33,39 less negative appraisal of the illness
or less uncertainty, 36 better communication between partners,36
and greater caregiver knowledge about community resources.42
The outcomes associated with supportive-educative interventions
indicate that they are effective in providing patients and spouses
with support and information, but can also produce many other
positive outcomes.
Caregiver Skills/Symptom Management Interventions
Since spouses benefit when they feel confident in providing care,
several studies have focused on improving caregivers skills. These
programs have been offered to patients and caregivers together,
or to caregivers alone. Interestingly, when a symptom manage-
ment intervention was offered jointly to patients and caregivers,
patients own symptom management improved, caregivers spent
less time helping patients to manage symptoms, and caregivers
reported less negative reactions to caregiving.43 Interventions to
increase caregivers skills or preparedness have increased care-
givers information about caregiving, 23 self-efficacy,44 and have
decreased caregivers depressive symptoms.45
Robinson and colleagues offered a family caregiver educa-
tion program to over 700 caregivers in the state of Pennsylvania
to enhance caregivers knowledge and skill. One of the unique
aspects of the program was that researchers educated not only the
caregivers, but also the health professionals from across the state
so that they could bring the program back to their local commu-
nities. The caregivers who participated in the program were more
knowledgeable about their role and about community resources,
were less overwhelmed, were better able to cope with the caregiv-
ing experience, and were more prepared to communicate with
health professionals.42 This study points out the importance of
educating both caregivers and professionals on ways to build care-
giving skills in both groups.
Coping Skills Interventions
Since the use of active coping strategies has been associated with
higher quality of life, some intervention programs have included
coping skills in their program content. Two studies focused pri-
marily on ways to improve the coping skills of patients and/ or

caregivers.46,47 The CanCope Program was developed by research-
ers in Australia to help breast cancer patients and their partners
jointly to cope with cancer and support each other. In an RCT,
they compared outcomes for couples in (1)a couple-based pro-
gram; (2)an individually based, patient-only program; and (3)a
control condition. The couple-based coping program produced
more positive outcomes than the patient-only program or con-
trol condition. The couple-based program increased partners
supportive communication with one another, increased their
intimacy as a couple, and decreased their coping effort. It also less-
ened patients use of avoidant coping, and also decreased patients
distress.46 In another study, caregivers of hospice patients were
offered (1)a standard hospice program only, (2)hospice plus sup-
portive visits, or (3) hospice with a coping skills intervention.
Caregivers in coping skills intervention reported less caregiver
burden and greater quality of life than caregivers in the other two
conditions.47 These studies document the value of teaching coping
skills to couples and/or caregivers who are trying to manage the
demands of cancer.
Relationship-Focused Interventions
Since cancer can cause stress in couples relationships, a few
studies have focused on relationship issues.41,48,49 Kuijer and
colleagues from New Zealand and the Netherlands devel-
oped an intervention to help couples reduce inequity (e.g.,
over-investment or under-benefit) in their relationships as they
coped with cancer. The intervention focused on ways that part-
ners support one another, maintain give and take in their rela-
tionships, and change their expectations of one another over the
course of illness. Couples who participated in the intervention
reported greater equity in their relationships and higher marital
satisfaction than couples in the control condition.49 To improve
relationships, some investigators contend that it may be neces-
sary to include both partners in the intervention. For example,
Manne et al.41 offered an intervention to wives of men with
prostate cancer to lessen wives distress, increase their personal
growth, and facilitate marital communication. Although wives
benefited from the intervention on some variables, the interven-
tion did not improve communication with their husbands. The
researchers suggest that the intervention may not have improved
marital communication because husbands were not included in
the intervention.
From these four categories of interventions (supportive-
educative, caregiving skills/symptom management, coping skills,
and relationship-focused interventions), it is clear that interven-
tions offered to couples or to spouses alone can have many posi-
tive effects. These interventions have addressed spouses needs
for support, information, communication, effective coping skills,
and caregiver self-efficacythe common needs of spouses that
were identified earlier in the chapter. Even though the majority
of intervention programs were helpful, few of them have been
disseminated into clinical practice settings where they could be
available to others. Translating and disseminating effective inter-
ventions into standard clinical care still remain a challenge for
both researchers and clinicians. In spite of the challenge, there are
examples of excellent clinical programs currently being offered
to single male parents and their children (whose mothers have
died), and to sexual minority couples coping with cancer (see
Chapter76).
Chapter75 spouse caregivers of cancer patients 571
Delivery of Interventions to Patients
and Family Caregivers
A report by the Institute of Medicine (IOM), titled Cancer Care
for the Whole Person: Meeting Psychosocial Health Needs,
addresses the importance of finding ways to provide psychoso-
cial care to cancer patients and their families.50 According to the
report, current cancer care provides state-of-the-science biomedi-
cal treatment, but fails to provide adequate psychosocial care. The
report states that there should be a standard of care that all patients
with cancer and their families should receive high-quality cancer
care that includes appropriate psychosocial health services.
On the basis of extensive review of the scientific literature, the
committee for the IOM report developed a model for effective
delivery of psychosocial services. Key aspects of the model include
(1)identifying psychosocial health needs, (2)linking patients and
families to psychosocial services they need, (3)supporting patients
and families as they manage the illness, (4)coordinating psycho-
social and biomedical care, and (5)following up on the delivery
of care to determine its effectiveness, and making modifications
as needed. The report contends that a combination of activities,
rather than a single activity only, is needed to deliver appropriate
psychosocial healthcare.
DIRECTIONS FOR FUTURE RESEARCH
On the basis of the review of literature and on the recommenda-
tions of the IOM report, several directions for future research are
suggested.
1. There is a need for comprehensive screening tools that can
address a range of psychosocial stressors that interfere with
patients and spouses ability to manage cancer.50 In a classic
study with widowers of formerly ill patients, Parkes51 identified a
number of factors that predict negative outcomes:age, socioeco-
nomic status, gender, culture, previous mental illness, prior life
crises, strength of the relationship, and social support. Screening
tools that incorporate a range of key factors will be valuable for
identifying patients and caregivers at risk of poorer outcomes.
2. Targeted and tailored interventions are needed. Not all patients
and spouses need intensive programs. Determining what pro-
gram is optimal for which patients and their caregivers will
produce better outcomes and use fewer healthcare resources.
3. There is a need for studies with caregivers who have been over-
looked in prior studies, or who are underserved in clinical
settings. This includes caregivers from different ethnic back-
grounds, those with few socioeconomic resources, and those
with same-gender partners.7
4. In view of the negative effects that the stress of caregiving can have
on spouses own physical and mental well-being, more interven-
tion research is needed that teaches caregivers self-management
skills that they can use to maintain their own health.
5. Interventions are needed that can effectively link patients and
caregivers with various healthcare services that they need,
using a variety of services such as case management and patient
navigators.50
6. Finally, programs are needed to educate health professionals so
they are more prepared to meet the psychosocial needs of can-
cer patients and their caregivers.50
572 Section XII psychological issues for the family
In summary, spouses lives are interdependent with patients
lives; each partner affects the other. Spouses have a number of
needs that must be addressed in order for them to maintain their
own emotional well-being and to provide effective care to patients.
Avariety of different intervention programs have been developed
and tested to meet spouses needs, but considerably more research
is essential. Attending to the psychosocial needs of cancer patients
and their spouses is an integral part of quality cancer care.50
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 CHAPTER76
Sexual Minority Health
in Psycho-Oncology
Youngmee Kim, Matthew J. Loscalzo, and Karen Clark
According to the 2011 Institute of Medicine (IOM) report,1 les-
bian, gay, bisexual, and transgender (LGBT) people are medically
underserved populations who are known to be at risk for poor
survivorship and survival outcomes of any disease.2 Cancer is not
an exception. Despite this, little health research has been devoted
to these sexual and gender minorities.
COMMON PATTERNS OF ADJUSTMENT
TOCANCER AMONG SEXUAL
MINORITY CANCER PATIENTS
ANDSURVIVORS
Sexual minority patients, compared with heterosexual counter-
parts in a convenience sample of breast cancer patients,3 reported
less thought avoidance, lower levels of sexual concern, less con-
cern about their appearance, and less disruption in sexual activity,
but also substantially lower perceptions of benefit from having had
cancer. Sexual minority patients also reported less social connec-
tion to family, but no group differences were found in connection
to friends. Among various coping strategies that were compared,
sexual minority patients reported less denial coping, and more use
of support from friends, more venting, and more positive refram-
ing.3 Similar group differences were found in another study with
regard to body image and social support, along with additional
null group differences in mood, sexual activity, and relation-
ship issues.4 Comparable information for sexual minority male
patients is lacking.
These findings provide preliminary support for the idea that
social support, particularly from friends, may play an important
role in sexual minority cancer patients well-being, maybe even
more than that in heterosexual patients. However, no studies to
date have investigated the links of social support from different
sources (e.g., spouse, other family, friends, and other) and of dif-
ferent kinds (e.g., emotional, informational, medical, and tangible)
with psychological and mental health of sexual minority cancer
patients and survivors. Therefore, intervention studies focusing
on psychological adjustment tailored to the unique characteristics
of sexual minorities are needed.
PSYCHOLOGICAL HEALTH IN SEXUAL
MINORITY CANCER PATIENTS
ANDSURVIVORS
Gender has been one of the key factors related to how people
respond to cancer diagnosis and treatment (Table 76.1).5 Arecent
meta-analysis found that women reported greater levels of dis-
tress than men, although 25 of the 46 samples examined in this
meta-analysis were confounded by studying gender-specific types
of cancer (breast, gynecological, prostate, or testicular cancer).5
Such gender group differences have been further refined when
examining subgroups of each gender by sexual orientation.
In a study where participants were recruited using a state cancer
registry, sexual minority breast cancer survivors reported levels of
anxiety and depression comparable to those of heterosexual breast
cancer survivors.6 In this study the known demographic and psy-
chosocial predictive factors, such as younger age and lower socio-
economic status, remained significant predictors of greater anxiety
and depression among female breast cancer survivors, regardless
of their sexual orientation. No difference in self-reported quality
of life among sexual minority versus heterosexual breast cancer
survivors was found in another study conducted using an elec-
tronic survey with a convenience sample.7 This is a contradictory
finding from what has been reported with regard to sexual minor-
ity adults (lesbian, gay, bisexual) as a group, who have more mood
and anxiety disorders, depression, suicidal ideation, and suicidal
behavior, compared with heterosexual adults.1
On the other hand, differing findings have emerged for subsets
of sexual minorities, such as those with advanced cancer and those
who used mood stabilizers. In these subsets, sexual minorities
reported greater levels of depression, whereas sexual minorities
who were employed reported lower levels of anxiety than hetero-
sexual counterparts.6 Distress of sexual minority breast cancer
patients was related to less disclosure of sexual orientation, less
use of helpless-hopeless coping, and having high levels of fighting
spirit as perceived by their partners.8 In the same study, the part-
ners distress was related to less likelihood of the patient disclos-
ing her sexual orientation and the patient using more fatalistic or
anxiety-driven preoccupation coping.

Table76.1 Key Findings on Psychosocial and Physical Health in Sexual Minorities and Implications for Psychosocial Care
Key Findings
In Sexual Minority Females
Less disclosure of sexual orientation related to greater distress
Breast cancer survivors report levels of anxiety and depression comparable to
those of heterosexual counterparts
2x more likely than heterosexual females to report their health as poor to fair
Lesbians highest rate of uterine cancer
Bisexuals highest rate of cervical cancer
Same-sex couples 3x more likely to die of breast cancer than hetero-sex
couples
Poorer lifestyle behaviors (smoking, obesity, physically inactive, alcohol use)
than heterosexual women
Perceive fewer benefits and barriers to cancer screening
In Sexual Minority Males
2x more likely than heterosexual males to have anal cancer
Less likely than sexual minority females to visit physician
These results suggest that although the psychological health of
sexual minority cancer survivors might be comparable to that of
heterosexual cancer survivors overall, the pre-existing psychoso-
cial resources and risk factors that play key roles in survivors psy-
chological adjustment may have an even greater impact on sexual
minority cancer survivors.
PHYSICAL HEALTH IN SEXUAL MINORITY
CANCER PATIENTS AND SURVIVORS
With regard to the physical health of sexual minority women,
little is known. Astudy using the California Health Interview
Surveys data found that sexual minority female cancer survi-
vors were greater than two times more likely than heterosexual
female cancer survivors to report their health as fair to poor.9
In addition, lesbians had the highest rate of uterine cancer,
and bisexual women had the highest rate of cervical cancer.9
Another study using the National Health Interview Survey
(NHIS) found that women in same-sex couples, compared with
women in different-sex relationships, had three times greater
age-adjusted risk for dying of breast cancer, whereas their over-
all risk for mortality did not differ.10 This limited information
suggests that sexual minority women may be at risk for poor
physical health in general and for developing some types of can-
cer in particular.
Sexual minority males, on the other hand, are approximately
two times more likely to have cancer, particularly anal cancer,
compared with heterosexual males.9 Anal cancer is associated
with infection by the human papilloma virus (HPV), which is
often sexually transmitted. Furthermore, individuals practic-
ing receptive anal intercourse are at an elevated risk for HPV
infection, which is more prevalent among black and Latino
men.11 Unlike cervical HPV infection, which peaks around the
age of 30 in women, anal HPV infection increases steadily in
men who have sex with men throughout the life course into
their sixties.11
Chapter76 sexual minority health 575
Implications for Psychosocial Care
Healthcare professionals assess the patients sexual preferences and avoid
heterosexual assumptions of their patients
Screen for social isolation, lack of proper social support, and unhealthy
lifestyle behaviors
Assess unmet needs pertinent to sexual minorities
Recognize the importance of partners in decision-making
Educate healthcare professionals and public to minimize social stigma
associated with sexual minorities
Encourage patients and partners actively seeking for social supportive and
LGBT supportive services
Teach problem-solving and assertive communication skills to both patient
and partner together
Promote healthy lifestyle behaviors through counseling and education
HEALTH LIFESTYLE BEHAVIORAL ISSUES
IN SEXUAL MINORITY CANCER
PATIENTS AND SURVIVORS
Although causality cannot be determined due to the cross-sectional
nature of the data, studies have found that female bisexual cancer
survivors were more likely to be smokers and physically inac-
tive, and to have more frequent visits to physicians, than female
heterosexual cancer survivors.12 Furthermore, sexual minority
women have been found to have greater rates of obesity and alco-
hol use,13,14 although another study found no differences in obe-
sity by sexual orientation.15 Sexual minority women also perceive
fewer benefits of and more barriers to cancer screening (e.g., breast
self-examination and Pap screening for cervical cancer), due in
part to greater fear of discrimination and less knowledge about
screening guidelines, resulting in lack of routine screening.16,17
When combined with the greater psychological and physical
morbidity among sexual minority women,1 the evidence that
sexual minority women have poorer lifestyle behaviors than het-
erosexual women suggests that this subgroup of women might be
more vulnerable to developing chronic diseases, including cancer.
Findings suggest that promoting healthy lifestyle behaviors is par-
ticularly crucial for sexual minority women.
In contrast, sexual minority men, unlike sexual minority
women, are less likely than heterosexual men to be overweight or
obese and more likely to engage in vigorous physical activities.12
Similar to sexual minority women, however, sexual minority men
are also more likely than heterosexual men to visit physicians.12
Findings suggest that, given the greater prevalence of anal can-
cer among sexual minority men, increased screening and pri-
mary prevention for anal cancer should be a priority for gay mens
health.
In summary, very limited research suggests that lesbians and
bisexual women may be at higher risk for breast cancer due to their
behavioral risk factors (obesity, smoking, alcohol associated with
576 Section XII psychological issues for the family
breast cancer). Men who have sex with men, particularly those who
are HIV positive, are at increased risk for anal cancer, with ethnic
minority men being disproportionately more affected. Cancer
prevention and screening, particularly for colorectal cancer, for
which evidence-based guidelines have been well established, has
been understudied among sexual minority populations.
FUTURE DIRECTIONS FOR HEALTH
DISPARITIES RESEARCH WITH SEXUAL
ANDGENDER MINORITIES
Theory-Driven Research
Sexual minorities are facing health disparities. Some challenges
are unique to this subgroup, while others are similar to ethnic
minority populations. The unique challenges stem from the sexual
orientation in the broad context of individual and sociocultural
milieus that are typically linked to health disparities. IOM com-
mittees on the health of lesbian, gay, bisexual, and transgender
people1 provided four comprehensive conceptual frameworks
to address health disparities, with a focus on sexual and gender
minorities. For example, the life-course framework18 and the inter-
sectionality perspective19 focus on individuals age and historical
cohort, and individuals self-identities in the context of racial,
ethnic, socioeconomic, and geographical diversity, respectively.
On the other hand, the minority stress model20 and the social ecol-
ogy perspective21 emphasize the group membership of the indi-
vidual, and the influence of families, communities, and society,
respectively.
Future studies are strongly encouraged to employ and test these
perspectives. The perspectives will guide research and policy to
address many significant unanswered questions on health dis-
parities in sexual and gender minorities, as they have successfully
provided crucial insights on stigma, discrimination, and victim-
ization associated with many sorts of minorities.
SUPPORTIVE CARE FOR SEXUAL
ANDGENDER MINORITIES
Perceived emotional support, such as willingness to communi-
cate about emotional experiences and showing empathy, has been
identified as a key salutary factor for cancer patients psychological
adjustment,22 whereas perceived avoidance and withdrawal from
discussion of the cancer experience have been identified as key
aggravating factors.23 Characteristics that are perceived by can-
cer patients as supportive are in line with a traditional feminine
portrait fitting the gender role stereotype. Not surprisingly, het-
erosexual female cancer patients rely on various sources of social
and emotional support, such as daughters, mothers, and female
friends, instead of solely relying on their male partners.24 Aflip
side of the same story has been the case among sexual minority
women, who rely singularly on their female partners.24
The gender difference in the pattern described above regarding
the preference for support, as well as the gender identity of the
person who actually provides support, may yield larger impact on
the quality of life of support receivers versus support providers.
For example, the benefit of receiving proper social support may be
larger for sexual minority women survivors, whereas the cost of
providing support may be larger and take a bigger toll on sexual
minority women caregivers. On the other hand, older gay men,
who often lack long-term partners, may experience more stress
as a function of their sexual orientation due in part to absence
of an essential support provider. 25 Other missing gaps in our
knowledge are the roles played by families of choice, which are
a common source of support for sexual minorities in their later
life (when the likelihood of major illnesses such as cancer, as well
as the needs for being cared by family, peak), and the gender of
chosen caregivers.
Cancer affects both patients and their family members. Agrow-
ing body of literature has documented the mutual influence
between adult cancer patients and their family caregivers on vari-
ous aspects of individuals quality of life (see Chapter79).26 It is
unknown, to date, to what degree the existing evidence has been
driven primarily by heterosexual couples or motheradult daugh-
ter pairs compared to sexual minority patient-caregiver dyads.
In addition, information is lacking about the role of caregivers in
sexual minority survivorship and about the consequences to qual-
ity of life of caregiving and care-receiving, not only among sex-
ual minority survivors but also among the caregivers. These are
critical gaps in our current knowledge. Furthermore, although the
focus of this review focuses on the psychosocial aspects of sexual
minorities in the literature, this is not meant to imply that there
are not biological vulnerabilities and strengths that are not rel-
evant to psychological adjustment in patients or in partners. The
role of biology is highly controversial, and the research is slowly
emerging given the complexity of the processes and the lack of
funding to do this important research.
Other areas of needs frequently desired by sexual minority can-
cer patients and survivors include more information about health-
care proxy, cancer, adolescent depression and suicide, adoption,
sexual health and practices, HIV infection, surrogate parenting,
mental health issues, transgender health issues, intimate partner
violence, and intimate partner loss.27 During the end-of-life care
period, concerns related to legal, financial, and discrimination
issues to the patients, as well as their surviving same-sex partners,
become paramount.28
Provision of the information needed and development of pro-
grams where sexual minority patients and their partners have
easy and convenient access to the needed relevant information for
sexual and gender minority cancer survivors will likely help to
improve the quality of life of this underserved population.
INTERVENTION RESEARCH FOR
SEXUALMINORITIES
A 12-week supportive-expressive group therapy interven-
tion was pilot tested with 20sexual minority breast cancer
patients. 29 The intervention focused on problems of a new diag-
nosis; coping with the illness and treatment; mood changes;
coping responses and self-efficacy; improving relationships
with family, friends, and physicians; the impact of the illness
on life; pain and sleep; and changes in body image and sexu-
ality. Intervention participants showed decreases in emotional
distress, intrusiveness, and avoidance, and increases in coping
over the 12-month follow-ups. Unexpectedly, however, use of
both instrumental and informational support, as well as fam-
ily conflict, declined. Findings provide preliminary suggestion
that psychosocial interventions tailored for the sexual minority

cancer survivors unmet needs would be efficacious for improv-
ing the quality of life of this medically underserved population.
In another study using data from the 2010 Behavioral Risk
Factor Surveillance System Cancer Survivorship Module, sexual
minority cancer survivors were more than twice as likely to report
participation in a clinical trial as heterosexual cancer survivors, 30
suggesting that sexual minority cancer survivors may be likely to
participate in evidence-based interventions. Furthermore, most
of the sexual minorities reported both experiencing strong sup-
port from their healthcare providers and sexual minority com-
munities but also instances of isolation and disconnection linked
to fear of cancer, homophobia in the broader community, and
exclusion within lesbian communities.31 Sexual minority breast
cancer survivors voiced their preference for having their breast
cancer treated as a womens issue, not a sexual minority issue, and
expressed the view that they are managing their breast cancer bet-
ter than heterosexual women.32
These findings suggest that it will be a fruitful next step to
include education for a comprehensive understanding of health
disparities that sexual and gender minorities face as a routine part
of diversity competency training for healthcare professional, as
health disparities among sexual and gender minorities are likely
larger than among other minorities such as ethnic minorities and
elders. It is recommended that healthcare professionals avoid het-
erosexual assumptions, explore the patients sexual preferences,
and recognize the importance of partners of sexual minority
patients in decision-making. 33 Educating the sexual minority
individuals as well as the LGBT communities about cancer will
also be highly desirable.
Although a growing number of studies in recent years has
contributed to advancing our knowledge about sexual minority
health, the majority of these studies are small (often less than 30
participants), cross-sectional, using convenience samples, and
focusing primarily on female breast cancer patients and survivors,
all of which limit generalizability of the findings. They also lack
rigor in methodology that is necessary to carry out theory-driven
and theory-testing research. It is highly recommended to employ
population-based methodologies, longitudinal, experimental, or
randomized controlled study design, to study both genders, and
to collect patient-partner dyad- or family-based data and multidi-
mensional multilevel data. Such study design and type of data will
help enable researchers and clinicians address the complex issues
that sexual and gender minorities are experiencing when dealing
with cancer, which also often interplay with concerns closely tied
to other types of minority status based on race/ethnicity, socioeco-
nomic status, and age. Future studies addressing these issues will
shed light on solving inequality and disparities embedded to ones
sexual orientation and advancing gender-based psycho-oncology
research and practices.
CONCLUSION AND FUTURE DIRECTIONS
Although it is standard in the scientific literature to make the
concluding argument that additional research needs to be done,
the level of our biological, social, and psychological understand-
ing of sexual minorities is seriously problematic on multiple
levels. Evidence identifying potential biological vulnerabilities
and behavioral risk factors has been extremely limited and all
too frequently tinged with social judgments and stereotypes.
Chapter76 sexual minority health 577
Political sensitivities about exploring any biological aspects of
sexual minorities cannot impede a scientific and humanistic
approach to maximizing the mental and physical health of any
population, especially one as large and diverse as sexual minori-
ties. Tracking the natural course of disease in sexual minorities
is virtually nonexistent, and this may affect both quality of and
length of life.
On a societal level, greater openness about sexuality and gen-
der identity is clearly emerging around the world. Even the most
conservative countries are being forced to confront the reality that
same sex couples exist. Therefore the number of sexual minorities
is only expected to increase. The emerging science clearly dem-
onstrates that families of same sex couples are at least as healthy
and stable as traditional family systems. But there is still much
to learn about how to maximize the health and well-being of
sexual minorities and to maximize their contributions to soci-
ety. Enhancing the well-being of individuals or of society cannot
become a reality without evidence-based data that actively pro-
mote healthy lifestyles while identifying and mitigating specific
lifestyle vulnerabilities that includes the full biopsychosocial con-
text. Groups that require special attention are sexual minorities
who are also high-risk (sexually active men and women), under-
served (rural, uninsured), socially isolated (more common in gay
and transsexual men), and the poor. The systematic study of the
healthcare needs of sexual minorities affected by cancer is highly
informative if for no other reason (and there are many others)
than that it brings into sharp relief the importance of carefully tai-
loring health education, screening, interventions, and measure-
ments of valued performance outcomes to the individual. This is
significant because ultimately we are all people first, and in many
ways cancer brings us all back to the atavistic universal need for
human connection.
Finally, much work can be accomplished if healthcare profes-
sionals themselves become educated and sensitized to the unique
needs of sexual minorities, especially concerning communication
and trust. Healthcare professionals are a mirroring microcosm of
society; at their best, they are compassionate experts who can use
the knowledge gained from the objective science of caring to be
role models for patients and their families, for our colleagues, and
for the society at large.
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 CHAPTER77
Addressing the Needs
of Children When a
Parent Has Cancer
Cynthia W.Moore and Paula K.Rauch
INTRODUCTION
For many parents, the question, What will Itell my children?
follows a cancer diagnosis with lightning speed. Parents wonder
whether to tell children about the diagnosis, how to share infor-
mation in an age-appropriate manner, what reactions to antici-
pate, and when to seek outside support for a child. There may be
one child they have particular concerns about due to temperament
or pre-existing challenges, or there may be family circumstances,
such as a recent death, that elevate concern about all the chil-
dren. This chapter provides an overview of key issues of concern
to parents and recommendations to support childrens emotional
health, so that clinicians can respond to parents concerns with
informed sensitivity.
REVIEW OF THE LITERATURE
Studies of parental cancers effects on children focus particularly
on two areas:the prevalence of negative outcomes, and the factors
associated with risk and resilience.13 Families frequently func-
tion quite well, despite the stresses of illness.4 Parents may also be
encouraged to learn that as a group, children and adolescents who
have a parent with cancer do not show higher levels of risky behav-
iors.5 However, children with an ill parent are at increased risk for
internalizing problems. Between 15% and 30% of children coping
with chronic parental illness, including cancer, experience inter-
nalizing symptoms such as depressed and anxious mood.3,611
As a group, children seem not to be thrown off developmen-
tal course by parental cancer, but it is clear that some children
are more vulnerable. Efforts to identify risk and protective factors
for psychosocial outcomes in these children have the potential to
guide clinical interventions. Characteristics of the family, parents,
and child that seem to influence a childs functioning in the con-
text of parental illness are described below.
Overall quality of family functioning affects childrens symp-
toms.12,13 In particular, adolescents from families with more
cohesion and open communication tend to have fewer internal-
izing and externalizing problems. 2,3,14 Interestingly, flexible
problem-solving predicted less adolescent psychological distress
in families dealing with parental cancer, but not in families with-
out illness.14 Aspects of parent functioning also relate to childrens
functioning, although medical variables, such as stage of illness
and type of cancer, generally do not. 2 Having a mother with
depression, and either an ill or non-ill parent with poor quality
of life, predicts more distress and internalizing problems in chil-
dren.9,12,13,15 Living with a chronically ill, single mother seems to
put children at increased risk for aggression and delinquency.10
Finally, children are at risk for worse academic achievement when
the illness imposes high demands on ill mothers or there is family
hardship as a result of the illness. Children earned better grades
when mothers had higher expectations about attaining higher
education and better grades, whereas other forms of involvement,
such as school contact and participation, did not relate to chil-
drens grades.16
A childs coping style has also been shown to relate to distress.
Denial, substance use, and behavioral disengagement related to
anxiety in a sample of Puerto Rican adolescents with an ill par-
ent.17 Generally, problem-focused and approach-oriented coping
strategies and support seeking are associated with better mental
health, while avoidance-oriented strategies are associated with
worse mental health, and emotion-focused coping shows mixed
results.6 The extent of daily hassles and stress in a childs life
relates to internalizing problems,12 which is important because
children with an ill parent also report challenges such as having
more chores, caregiving responsibilities, and restrictions on their
activities.11
Many parents worry that sharing information about cancer
will distress their children, and wish to protect their children
by remaining quiet. Yet in one qualitative study, 815-year-olds
clearly expressed the importance of having a precise knowledge
of the parents illness, even though being included in these con-
versations could be difficult.18 Even after deciding to try to talk
openly and honestly with children, parents frequently struggle
with what to say. Receiving guidance from a professional or
through a family intervention about talking with children can
improve communication,19 though more research is needed to
identify the key ingredients in such an intervention.
580 Section XII psychological issues for the family

Certain topics pose particular challenges, such as discussing fam-
ily or genetic risk for cancer. Parents may rightfully worry that learn-
ing of an increased risk will be upsetting; in one study, daughters who
learned that their mother received a positive gene test result were more
distressed and concerned than other groups. Even learning of a varia-
tion of uncertain significance was distressing for these daughters.20
A DEVELOPMENTAL PERSPECTIVE
The nuts and bolts of how to talk with children openly and hon-
estly varies according to the childs developmental stage, which
affects how children understand the cancer diagnosis, and the
support they need (Box 77.1).

Box 77.1 Common Concerns and Supports Needed for Each Developmental Stage
Infants and Toddlers (02years)
Tuned in to the emotional tone of conversations, more than language used
Limit conversations about distressing news in their presence
Affected by disruptions in routines
Focus on maintaining consistent anchors for the day (naps, meals, bath, bedtime) and write out routines for other caregivers
Multiple new caregivers will be stressful
Carefully weigh advantages of sharing the load of child care with several adults versus keeping the number of childs caregivers
very small
Preschoolers (35years)
Confused by overheard conversations and unexplained changes in parent; may assume they are responsible (Mommy doesnt want
to play with me... thats because Imade her mad.)
Provide the name and a simple explanation of the illness and treatment
Be clear that nothing the child thought or did caused the illness or treatment side effects
Rely on consistent rules and routines for security (despite also protesting limits)
Describe any expected changes to childs routines
When feasible, offer choices to the child that provide a sense of control
School-age children (611years)
Likely to have heard of cancer, may be aware that people can die of cancer
Provide the name of the illness, describe basics of treatment plan
Clarify that cancer is a category of illness that has similarities and differences, like dog is a category of animal containing many
different types
Concrete understanding of causes and course of illnesses (I thought Walk for a Cure meant my Mom would get better by exercising)
Ask children what they think caused the illness, and correct misperceptions (e.g., contagion, stress of parenting)
Avoid euphemisms
Somatic complaints common
Communicate with school nurse and childs pediatrician
Often cope by staying busy, distracting from distress
Prioritize consistent engagement in activities that are enjoyable and promote self-confidence
Online resources with a calendar function can help organize help with practical challenges like rides, shopping
Early adolescents (1214years)
More likely to understand the basic biology of cancer (abnormal cells that divide quickly, a variety of bodily systems can be affected)
and to be curious about details
Discourage independent Internet research; emphasize the importance of relying on the parent for accurate information about the
parents unique circumstances
Frequently self-involved, sensitive to how illness sets them apart from peers
Offer choices about which school personnel will be kept informed of parents condition, and what, if any, outreach to child is made
(continued)
 Chapter77 addressing the needs of children 581

Box 77.1(Continued)

May be embarrassed to show distress or look emotional in front of others; may withdraw when upset
Limit discussions of illness primarily to home
Have a plan in case child becomes upset at school, and share it with an adult there
Late adolescents (1518years)
Increasinglysophisticated understanding of illness allows a broader range of concerns (e.g., familial/genetic cancer risk, financial
burden of illness)
Consider genetic counseling for factual information, realistic screening plans, and reassurance that risk is non-immediate
Adults capacity to tolerate discussions of future possibilities (e.g., financial, practical) may defuse concerns better than blanket
reassurance or hiding relevant information
More empathic; managing competing concerns about self and others can be challenging
Recognize that avoidance of an ill parent results more often from a combination of deep love and sadness, than from indifference
Listen for guilt (about the relationship, things said or unsaid, done or undone) and challenge it
Fluctuating ability to provide consistent, practical help and to be responsible despite empathy
If new responsibilities are given, give choices where possible, and carefully consider whether needed skills are already present
(including organization, self-motivation, ample free time)
Young adults (19 andolder)
Balancing family loyalty and ideas about remaining near home, with normative opportunities for greater physical distance and
self-reliance
Benefit from accurate information about prognosis to allow decision-making based on their own values

Facilitating Communication
In addition to the developmental considerations outlined in
Box 77.1, some general guidelines summarized by the acronym
HONEST can help relieve parents anxiety about initiating con-
versations about illness (Box 77.2).
SUPPORTING FAMILY FUNCTIONING
Cancer can be enormously disruptive to a familys typical rou-
tines. For example, an ill parent may not feel well enough to help
children get ready for school every morning, to coach a sport, or to
shop for a prom dress. Sometimes bigger changes occur, as when
a child needs to start daycare as a result of the parents illness, or
when grandparents move in for a period of time.
When there are many disruptions in family life, and when they
last for a long time, childrens adjustment can suffer. But with
encouragement, parents are usually adept at generating concrete
ideas about how they can maintain consistent routines and rules,
and protect family time. Practices like limiting visitors and calls
to times of day when children are not present, updating many
people at once by using an e-mail distribution list, or designating
a friend to coordinate offers of help can both protect family time
and make it easier to be honest about what support is needed, and
what is unhelpful. There are a number of easy-to-use websites with
a calendar function (e.g., Lotsa Helping Hands, Caring Bridge).
These allow a coordinator to request help on specific days, and
volunteers to respond online.
Some parents struggle with asking for help. Asking them to
think about ways they relate to their children that truly require
their presence can help parents prioritize where they spend their
energy. For example, children are largely unaffected by who buys
groceries or does laundry, but may need a parent for regular help
with homework.
Managing Separations
Though much about cancer is unpredictable, hospitalizations may be
scheduled far enough in advance that families can discuss the reason
for the treatment and separation, whether visits will be possible, and
practical concerns such as who will care for children while a parent
is away. It may help to frame longer separations as a short-term chal-
lenge important for the familys long-term benefit. Box 77.3 sum-
marizes strategies to prepare for separations that can help maintain
connections between an absent parent and the children.
COMMON CHALLENGES
Helping children cope with parental cancer is made more compli-
cated when parents experience frequent conflict, are estranged, or
are divorced. These parents often insist they cannot safely share
medical or financial information. However, for both parents to
be able to answer childrens questions and respond sensitively to
a variety of reactions, both require basic information about the
practical impact of the diagnosis and treatment plan on the chil-
dren. If too much conflict exists, another adult may serve as an
intermediary. Children should not be asked to convey medical
information to the other parent.
Ill parents may worry that if they dont survive, their children
will have no choice but to live with a clearly inadequate parent,
582 Section XII psychological issues for the family
Box 77.2 HONEST Communication
Home
Choose a private place to talk; time the conversation to allow
ample time for children to process information and manage
emotions
If children live away from home, discuss how and when they
want to receive updates
Open-ended questions
Ask what changes children have observed in the parents
functioning or home life and/or what they already under-
stand about the illness
Name the illness or the current challenges
Avoid euphemisms; provide details in response to childs lead
Elicit emotions
Validate and empathize with a range of feelings
Specify impact on daily routines
Offer choices about how to minimize disruptions
Touchbase
Follow
up at times child is most likely to talk
Please never worry alone
Are you hearing too much or too little about cancer?
or alternatively, may be unaware that even a long-absent parent
can have legal rights to a child. A referral to a family lawyer
can be invaluable in many of these complicated situations. It
is critical that extended family members are not left to fight
for custody of a child without having a record of the parents
wishes.
Even when both parents are actively raising children, frequently
an ill parent will verbalize the sense that should they die, the chil-
drens practical needs will be met, but they wont be as lovingly
nurtured. With ample empathy for the painfulness of the situa-
tion, clinicians may be able to encourage parents to consider who
else in their childrens lives share some of the qualities they most
value in their own parenting. Relationships between children
and these adults can often be deepened in advance of a parents
death, in ways that the surviving parent is able to tolerate and even
appreciate.
Finally, it can be difficult to begin to ask about any of these con-
cerns if parents insist that they are thinking positive. However,
parents need to be aware that although they are quite optimistic,
their children may still conceal worries about a variety of fright-
ening possibilities, such as where they would live and who would
care for them if anything happened to the parent. To start, par-
ents can be asked, What are your concerns about your children if
treatment doesnt go as well as we hope? or, A lot of parents have
a hard time thinking about who would care for their children if
they couldnt for any reason... but find it enormously reassur-
ing once plans are made. Is that something we could talk about
together?
Box 77.3 Managing Separations and Hospital Visits
Preparing for Separations
Infants/toddlers
Leave caregivers detailed notes about feeding and nap times,
strategies for soothing, favorite ways to play
School-age children and teens
Describethe reason for the treatment and expected length of
separation
Invite childrens help in choosing caregivers, planning rides
to school, and activities
Discuss when and how children will receive updates on the
parents condition
Keeping in Touch
Phone calls, e-mail, instant messaging, video conferencing
help keep parents in touch with caregivers and older children
Both children and parents appreciate receiving cards,
drawings
Have a trusted adult available to assist children to process
updates about the ill parent
Preparing for Childrens Hospital Visits
Describehow ill parent will look and behave, what the child
may hear or see (e.g., obvious surgical effects, medical equip-
ment, roommates)
Encourage, but do not force, a reluctant child to visit;
elicit questions and concerns, problem-solve, and correct
misperceptions
Pack activities:quiet games, art supplies, homework
Consider delaying visit if the parent is agitated, delirious, or
at high risk of infection
WHEN ADDITIONAL SUPPORT IS NEEDED
Having cancer seems to elicit advice from all corners. Parents
are commonly advised to get children into therapy right away by
well-meaning friends or relatives, yet may question whether the
benefits will outweigh the challenges inherent in obtaining these
services for their child. Many children cope well, even thrive,
over the course of a parents illness and do not require formal
counseling. These children remain engaged in school, continue
to enjoy extracurricular activities, stay connected to friends,
and, for the most part, behave as usual at home. However, for a
variety of reasons, some children are more vulnerable to having
difficulties in coping and benefit from psychological assessment
and treatment.
Included here are children who should be evaluated by a mental
health professional:
Verbalize a wish to speak to a therapist
Verbalize thoughts of self-harm

Experience an increase in symptoms of a pre-existing mental
health issue (e.g., anxiety, depression)
Function worse at school, with peers, or at home for more than
several weeks.
Meeting with the school counselor is often a good first step and
may provide adequate support for the child. However, some
children prefer not to talk about cancer at school, so that school
remains an island of normalcy.
END-OF-LIFE ISSUES
Informing a child that a parent probably wont survive much lon-
ger is fraught with sadness and worry. Parents express concern
about when to share this news, what to say, and how their children
might react. Very young children are unlikely to understand or
benefit from advance warning that a parents death is imminent.
Children around age four and older, however, may regret missing
the opportunity to say goodbye in whatever way is meaningful,
and may perceive adults protectiveness as being excluded.
In deciding when to inform children about an impending death,
parents must balance speaking soon enough so that the child has
time to process the news and say goodbye, with waiting long
enough so that the child isnt made too anxious for too long, con-
fused by a dying parent who still seems to function relatively
well, or pressured to keep the relationship happy and conflict-free
over an impossibly long period. Ideally, the conversation will
occur before the ill parent experiences irreversible changes in
mental status or cognitive function, preventing a two-way con-
versation between parent and child. If there is hope that the par-
ent may be alert for a number of days, but concern that a sudden
change in function is possible, it is generally better to err on the
side of informing children sooner than later. Children can be told
that time with the parent is precious, and that it is important for
them to say anything that needs to be said soon.
Some children quite willingly visit a dying parent, while oth-
ers balk due to concerns that can be alleviated fairly easily once
they are discovered and discussed. For example, a child may feel
embarrassed to cry in front of other people, or fear being alone
with the parent at the time of death. Aplan to clear the room of
other visitors while the child is there, or to ensure the presence of
an adult at all times, may help the child feel safe enough to visit.
Some worries are harder to address:for example, an adolescents
concern that he will not be able to remember his mother as healthy
if he sees her at the very end of life. If a visit will not be possible,
the child may be encouraged to send a note for another adult to
read to the parent, to say something over the telephone, or to sim-
ply send hugs.
Sharing news of a parents death is one of the hardest conversa-
tions an adult can have with a child. Euphemisms for deathbeing
called to be with God, being taken by the angels, gone to Heaven
keep us at arms length from the painfulness of a loss, but are con-
fusing to preschoolers and even some 612-year-olds because they
lack a clear understanding of biological death. Death should be
explained to young children in simple, concrete terms: Death
is when the body completely stops working... the heart stops,
breathing stops, so its not like just being asleep. Parents should
be prepared for questions like, Can we give him more medicine
and make him better? or, repeatedly, When is Mommy coming
Chapter77 addressing the needs of children 583
home? as children struggle to come to terms with the irrevers-
ibility and permanence of this separation.
Attending a parents funeral or memorial can help all but the
youngest children to process the loss, if they are well prepared.
Adescription of what children will see and hear during the ritu-
als, and the ways emotions may be expressed by different people,
is a good start. If a child expresses a strong desire to stay home,
even after discussions about what would allow him to attend, it is
usually best to honor this. Having an adult attend the funeral with
a younger child will allow her to leave if needed during the ser-
vice, without pulling away the other parent who will likely need
to stay. Children can be invited, but not required, to participate
in the service in a number of wayssharing some favorite memo-
ries, playing an instrument, choosing photographs for a collage,
even arranging napkins. Older children should be given choices
about which photographs that include them will be on display,
and which of their peers are invited. Finally, the presence of many
friends and relatives at the funeral provides a rare opportunity
to collect written stories and memories about the parent, which
enrich that parents legacy.
PARENTING SUPPORT IN ARANGE
OFSETTINGS
Cancer centers, like families, are unique, and there is no one size
fits all approach to providing parenting support in every possible
setting. At a minimum, patients need the importance of their role
as parents acknowledged by their medical team, and their con-
cerns about children heard and validated. Instruments such as
the Parenting Concerns Questionnaire21 can help standardize an
approach to inquiring about concerns about children, and clini-
cians can make available a list of resources that address children
needs around parental cancer. These can include books on parent-
ing with cancer,22,23 lists of helpful websites, as well as a list of local
therapists and nonprofit agencies that work with cancer patients
and their families. Many treatment settings could go further, and
support one or two staff members in developing expertise in this
area. Ideally, these providers would already have a background in
mental health to which they could add a solid working knowledge
of child development gleaned from formal classes or supervision.
The field of psycho-oncology has begun to fill a critical gap in
services for parents with cancer. Our hope is that before long,
information and support for these parents in caring for their chil-
dren will be so readily accessible that What will Itell my chil-
dren? will not even need to be spoken before help is offered.
REFERENCES
1. Grabiak BR, Bender CM, Puskar KR. The impact of parental cancer
on the adolescent:an analysis of the literature. Psycho-Oncology.
2007;16(2):127137.
2. Osborn T. The psychosocial impact of parental cancer on chil-
dren and adolescents:a systematic review. Psycho-Oncology.
2007;16(2):101126.
3. Watson M, St. James-Roberts I, Ashley S, etal. Factors associated
with emotional and behavioural problems among school age children
of breast cancer patients. Br J Cancer. 2006;94:4350.
4. Kuhne F, Krattenmacher T, Bergelt C, etal. There is still so much
ahead of usfamily functioning in families of palliative cancer
patients. Fam Syst Health. 2013;31(2):181193.
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5. Jantzer V, Gro J, Stute F, etal. Risk behaviors and externalizing
behaviors in adolescents dealing with parental cancer:a controlled
longitudinal study. Psycho-Oncology. 2013;22:26112616.
6. Krattenmacher T, Kuhne F, Fuhrer D, etal. Coping skills and mental
health status in adolescents when a parent has cancer:a multicenter
and multi-perspective study. J Psychosom Res. 2013;74:252259.
7. Nelson E, While D. Childrens adjustment during the first year of a
parents cancer diagnosis. J Psychosoc Onc. 2002;20(1):1536.
8. Visser A, Huizinga GA, Hoekstra HJ, etal. Emotional and behav-
ioural functioning of children of a parent diagnosed with cancer:a
cross-informant perspective. Psycho-Oncology. 2005;14:746758.
9. Krattenmacher T, Kuhne F, Halverscheid S, etal. A comparison of
the emotional and behavioral problems of children of patients with
cancer or a mental disorder and their association with parental qual-
ity of life. J Psychosom Res. 2014;76:213220.
10. Sieh DS, Meijer AM, Oort FJ, Visser-Meily JMA, Van der Leij
DAV. Problem behavior in children of chronically ill parents:a
meta-analysis. Clin Child Fam Psychol Rev. 2010;13:384397.
11. Sieh DS, Visser-Meily JM, Meijer AM. Differential outcomes of ado-
lescents with chronically ill and healthy parents. J Child Fam Stud.
2013;22:209218.
12. Sieh DS, Oort FJ, Visser-Meily JMA, Meijer AM. Mediators for inter-
nalizing problems in adolescents of parents with chronic medical
condition. J Dev Phys Disabil. 2014;26:6782.
13. Krattenmacher T, Khne F, Ernst J, Bergelt C, Romer G, Mller
B. Parental cancer:factors associated with childrens psy-
chosocial adjustmenta systematic review. J Psychosom Res.
2012;72(5):344356.
14. Lindqvist B, Schmitt F, Santalahti P, Romer G, Piha J. Factors associ-
ated with the mental health of adolescents when a parent has cancer.
Scand J Psychol. 2007;48(4):345351.
15. Lewis FM, Darby EL. Adolescent adjustment and maternal
breast cancer:a test of the faucet hypothesis. J Psychosoc Oncol.
2003;21(4):81104.
16. Chen Y, Fish MC. Parental involvement of mothers with chronic
illness and childrens academic achievement. J Fam Issues.
2013;34(5):583606.
17. Costas-Muiz R. Hispanic adolescents coping with parental cancer.
Support Care Cancer. 2012;20:413417.
18. Thastum M, Johansen MB, Gubba L. Coping, social relations, and
communication:a qualitative exploratory study of children of par-
ents with cancer. Clin Child Psychol Psychiat. 2008;13(1):123138.
19. Davey MP, Kissill K, Lynch L, Harmon L, Hodgson N. A culturally
adapted family intervention for African-American families coping
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close BRCA1/2 test results:their communication and perceptions of
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tress and parenting concerns among adults with cancer. Cancer.
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Parent Is Sick. NewYork:McGraw-Hill; 2006.
 CHAPTER78
Bereavement
Theory, Clinical Presentation,
and Intervention in the
Setting of Cancer Care
Wendy G.Lichtenthal, Holly G.Prigerson,
and David W.Kissane
INTRODUCTION
Psycho-oncology professionals who take a family-centered
approach witness grief in both patients and their loved ones, often
beginning from the time of a cancer diagnosis as they consider the
possibility that the illness might be fatal. Grief continues over time
as patients suffer many losses before their death, ranging from
physical capacity to important roles and future plans. Support
throughout these experiences allows providers to form trusting
relationships with the patient and family so that they can facilitate
continuity of care from end of life through bereavement.1,2
Specifically, psycho-oncology clinicians can help the family
understand the dying process, which may provide comfort and
some sense of predictability, and provide support in the wake of
the patients death. To do so, clinicians need to be comfortable
with the multiple presentations of grief, to understand risk factors
for morbid outcomes, and to be able to manage such expressions
or to make appropriate referrals when risk factors are apparent or
clinical intervention seems necessary.
Many terms are used, often interchangeably, to indicate reac-
tions to loss. The following are definitions provided by grief
scholars:
Bereavement is an event, the state of loss resulting from death.3
Griefis the emotional response to any loss, including related
feelings, cognitions, and behaviors.3
Mourning is the process of adaptation, which includes cultur-
ally, religious, and socially influenced behaviors, such as griev-
ing rituals.3
Anticipatory grief is the emotional response to an impending
loss, including related feelings, cognitions, and behaviors.2
Complications of bereavement include impairing mental health
concerns (e.g., depression, anxiety, prolonged grief disorder) that
are believed to be precipitated in part by the loss of a loved one.2
Disenfranchised grief occurs when individuals feel that they
have less social permission to express their response.2
Ambiguous loss arises when the nature of the event is uncer-
tain, well exemplified by the missing person, but also seen clini-
cally with cognitive disturbance in delirium or dementia.4
THEORETICAL MODELS OF GRIEF
An understanding of general bereavement theories can assist staff
with comprehending observed behaviors and with recognizing
when to make referrals. They can also provide the basis for helpful
psychoeducation for patients and families. These models suggest
adaptive tasks as well as potential preventive strategies and inter-
ventions, and are detailed in Table 78.1 (see references 2 and 3 for
summaries).
CLINICAL PRESENTATIONS OF GRIEF
Clinicians in oncology may witness grieving in numerous con-
texts, including anticipatory grieving as the illness progresses,
acute grief at the time of death, and in some cases, prolonged
grieving that does not abate with time.
Anticipatory Grief
A feature of grief among survivors of deceased cancer patients
is that it begins well before the death. From the time of diagno-
sis, cognitive and emotional acceptance of a poor prognosis is a
dynamic process, waxing and waning as acknowledgment of the
prognostic reality competes with a desire to maintain hope for
a cure. Loved ones may present with unrealistic optimism, pro-
test, anger, or heightened protectiveness of the patient.1,3 While
some theorists have suggested that the presence of anticipatory
grief diminishes the intensity of post-loss grief, studies in this
area have yielded inconsistent findings. In fact, more debilitating
586 Section XII psychological issues for the family

Table78.1 Theoretical Models of Grief

Theory Key Concepts

Attachment Theory2,3,26 Children instinctually attach to their caregivers, seeking safety and security to promote their survival.
Working models of these early attachments are internalized.
Insecure attachment styles are associated with increased separation distress and prolonged grief.

Evolutionary Theories2,3
Psychodynamic Theories2,3
Grief promotes reunion when separated from attachment figures.
Grief promotes disengagement with the deceased so that relationships and plans can be reorganized while providing a
signal to others in the environment.
Early separations (e.g., between infant and mother) influence subsequent emotional reactions to separations.
Yearning for the lost object is considered an adaptive response.
Processing ones emotions through grief work is adaptive.

Interpersonal Theories3
Cognitive Theories6,8,21
Interaction patterns and roles shape identity and self-schemas.
Person schemas related to deceased individuals (e.g., an ambivalent schema) can be identified and modified as they
emerge in current relationships.
Background assumptive beliefs about how life was meant to be are often challenged when loss is not in keeping with
the life cycle or other expectations.
Adjustment to loss involves assimilation and accommodation.

Cognitive Behavioral Theory3,22,23,26
Sociological Theories2,3
Adaptive forms of meaning reconstruction (making meaning of the loss through creation of coherent narratives) can
facilitate adjustment.
Cognitive appraisals of a situation determine how stressful an event is perceived to be, influencing related coping
strategies and physiological responses (cognitive stress theory).
Emotions, thoughts, and behaviors are related, and when maladaptive, they play a role in prolonged or severe grief
responses.
Distorted cognitions (e.g., unrealistic thoughts that one should have done more to care for the deceased) and
associated feelings (e.g., guilt) can result in unhelpful ruminations about the deceased.
Avoidance becomes negatively reinforcing, and may prolong the course of grief by reducing opportunities for
processing the loss as well as for pleasurable, corrective experiences.
Society influences individual mourning, including culture-specific rituals (e.g., self-mutilation) and the extent to which
bonds are continued.
Culture and social norms shape grief expression and the sanctioning of public and private grieving practices.

Social support of the bereaved serves to reduce isolation and buffer additional stressors.

Family Systems Theory13
Dual Process Model of Coping2
Task Model8
Neurobiopsychosocial Theories27
Individual members of a bereaved family have reciprocal influences on one another.
Grief is impacted by the deceaseds family role and the familys preloss level of functioning.
Adaptive coping involves oscillation between both loss-oriented processes, which focus on grieving the deceased and
confronting the reality of the loss, and restoration-oriented processes, which focus on assimilation in the world in the
absence of the deceased and allow respite from painful emotions.
Adaptation to loss involves four key tasks, including accepting the reality of the loss, experiencing the pain of grief, adjusting
to a world without the deceased, and continuing the connection to the deceased while moving forward with life.
Loss/separation produces a general stress response as well as an attachment-specific stress response related to the
rewarding aspects of attachment.
Examines activation of brain regions involved in grieving, such as the posterior cingulate cortex (involved in retrieval of
emotion-laden episodic memories) and the nucleus accumbens (which has shown reward-related activity in individuals
with more prolonged grief reactions).

anticipatory grief and related coping difficulties have been associ-
ated with post-loss challenges.5
More intense anticipatory grieving is often observed when seri-
ous disease progression is communicated to the patient. Sensitive
communication can assist the family in processing this informa-
tion and in coping. Families may grow closer and more cohesive
as they adapt to the multiple losses associated with advanced
illness and express their attachment through acts of caregiving.1,2
Providers can encourage open communication and opportunities
to say goodbye, allowing patients and families to address unfin-
ished business, express appreciation for one another, and resolve
relationship issues when possible.1,2 However, members in more
dysfunctional families may react with denial, hostility, avoidance,
or other maladaptive behaviors, resulting in tension and conflict.

Grief Around the Time of Death
When the family is at the patients bedside at the time of death, they
are often emotional and exceptionally attentive to details related
to the patients well-being. Vivid memories of these moments
can remain with survivors long after the patients death, neces-
sitating that clinicians exhibit the utmost respect and sensitivity.
Practitioners are key providers of reassurance about the patients
comfort and of information about the dying process, including
the meaning of sounds, secretions, and changes in breathing pat-
terns and levels of consciousness.
Family members who are not present should be contacted by
staff when the patients condition begins to deteriorate and death
appears imminent. If the death occurs before the family can be
reached, relatives should be offered an opportunity to view the
body, and should be given information about the sequence of
events leading up to the death. Staff should respect and honor cul-
tural and religious practices, including those related to autopsy,
time alone with the patient, and pastoral counseling. Culture may
influence expressions of acute grief, and clinicians could consult
with a cultural intermediary to ensure that they respond sensi-
tively to a familys practices and needs. Efforts should be made to
prevent disenfranchised grief,2,3 and so expected deaths, as many
cancer deaths are, should not be minimized. Families greatly
appreciate clinicians communicating their sympathy through a
phone call or other personal means. Other types of support include
prescription of anxiolytics or sleep aids, referrals for psychosocial
services, and direction about making funeral arrangements.
Acute Grief Following the Death
The course of grief is variable and may be expressed in very dif-
ferent ways, even within a given family system. Emotions are
often intensely distressing following the loss, making it difficult
to distinguish between normal and maladaptive responses dur-
ing the first months of bereavement. The course of adaptive grief
has characteristic emotions, cognitions, behaviors, and physical
symptoms. Emotions that come and go in waves include sadness,
guilt, anger, despair, and anxiety.3,6 Individuals often initially
experience a profound sense of yearning for the lost individual.
Survivors of patients who were intensely suffering may experi-
ence a sense of relief in parallel with their sadness. Thoughts may
range from deliberate reminiscing about the deceased to unbid-
den, intrusive images and memories. Behaviors include searching
for the deceased, social withdrawal, or alternatively seeking sup-
port and comfort. Physical symptoms include difficulty sleeping,
fatigue, anorexia, mild weight loss, numbness, restlessness, ten-
sion, tremors, and sometimes pain.
Early theorists proposed that there were consecutive stages of
normal or adaptive grief that individuals need to pass through
to achieve acceptance of the loss, including shock, yearning,
angry protest, sad or depressed mood, and finally, recovery from
the loss.2,3 This trajectory, widely accepted in the field for years,
is illustrated in the top panel of Figure 78.1. Empirical support
for this model has been mixed. Absolute levels of grief indica-
tors among bereaved community-based participants in the Yale
Bereavement Study assessed between two and 24months post-loss
demonstrated that yearning was the predominant initial reac-
tion, rather than shock and disbelief, as previously conjectured,
although shock or other symptoms may have been elevated in
Chapter78 bereavement 587
the two months prior to assessment.7 See the bottom panel of
Figure78.1, in which declines in shock, yearning, and sad mood
and an increase in acceptance over time are depicted.7 Rescaling
these grief indicators and comparing their respective peak fre-
quencies during the first six months of loss revealed a sequence
similar to the order of stages proposed by Parkes3,6 and popular-
ized by Kubler-Ross.3
Thus, there is some support for an initial state of shock follow-
ing the loss and a growing acceptance of the death. That said,
stages of grief may overlap, intense emotions may wax and wane
in the early phases of bereavement, bonds to the deceased indi-
vidual may continue, and grief may be experienced intermittently
throughout ones life.3 Adaptive coping is widely believed to fol-
low the dual process model of coping, with an oscillation between
confrontation of the loss, including processing related emotions,
and re-engagement in life without the deceased.3,8 The intensity
and duration of grieving are largely related to the strength and
degree of security of the attachment. No firm timelines for adap-
tation have been established, but cultural sanctions may influence
the duration of expressions of grief.2
In general, 80%90% of bereaved individuals are able to adapt
to the loss, as indicated by their ability to acknowledge the loss
and transform their relationship to the deceased; to re-engage
in work, leisure, and creative activities; to maintain and develop
personal relationships; and to consider their lives and the future
as potentially meaningful and satisfying.2,9,10 They may continue
to grieve throughout their lives, when activated by reminders of
the deceased or anniversaries, but their reactions will gradually
become less intense and briefer in duration. The capacity to remi-
nisce about their deceased loved one with equanimity is the hall-
mark of healthy adjustment to the loss. Studies have demonstrated
that resilience following bereavement is common.3,11
Pathological Responses to Bereavement
Bereavement-Related Psychopathology
In the acute phase of grief, intense waves of sadness and anxiety
are typical and expected. For a subset of individuals, however, the
stress of bereavement can interact with existing vulnerabilities,
resulting in pervasive, persistent depressed mood, or the exacer-
bation of premorbid psychiatric conditions. The Diagnostic and
Statistical Manual for Mental Disorders (5th edition; DSM-5)12
allows for a diagnosis of depression if pertinent symptoms have
been present for at least two weeks after experiencing the loss of
a love one, but given that depressive symptoms are so common
during the early months of bereavement, clinicians should only
make such a diagnosis during the acute stages of bereavement
after carefully considering an individuals history and cultural
norms regarding bereavement. That being said, major depression
is quite common among the newly bereaved who have a past or
family history of clinical depression, and treatment with antide-
pressants may limit suffering and allow a more adaptive mourn-
ing to proceed.
Bereaved individuals may also meet criteria for anxiety dis-
orders, presenting with symptoms of separation anxiety,
panic disorder, generalized anxiety, phobias, and/or somatization
disorders. They may exhibit symptoms of post-traumatic stress
disorder (PTSD) when circumstances of the death are perceived
as traumatic, involving, for example, gross disfigurement, weep-
ing bedsores, foul odors, or agitated delirium. In addition, those
588 Section XII psychological issues for the family

Hypothesized Grief Resolution (as illustrated in Jacobs, 1993)*

Frequency
High Acceptance/
Separation distress
Depression Recovery
Yearning/Anger
Disbelief

Low
0 1 2 3 4 5 6
Month from Loss

Unadjusted Mean Grief Resolution Scores

Frequencyb
The first 6 months
5

Acceptance
4

Yearning
3

Depressed Mood
2
Anger
Disbelief

1
0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24
Months from Lossa
a: All of the lines start from 2 months after loss and end at 24 months
b: 1 = Less than once a month; 2 = Monthly; 3 = Weekly; 4 = Daily; 5 = Several times a day except
for indicater of depressed mood

Figure78.1 Proposed grief resolution model and observed grief symptoms over time.Reprinted from Jacobs SC, Diagram of the dimensions of grief. Pathologic
Grief:Maladaptation to Loss, 1993. With permission from the American Psychiatric Association.

who have a history of substance, bipolar, or psychotic disorders are
at heightened risk of relapse. According to the rules of DSM-5,12
adjustment disorder diagnoses should be deferred if the clinical
symptoms are due to normal bereavement.
Prolonged Grief Disorder
While grief diminishes in its intensity among the majority of
bereaved individuals, approximately 10%20% exhibit a more
prolonged and severe grief response, which has been referred to
as prolonged grief disorder (PGD).2,10 These people may appear
stuck in their grief, experiencing intense pining and yearn-
ing for the lost individual, with distressing ruminations and
intrusive thoughts about the absence of the deceased, a struggle
to find meaning in their lives without their loved one, and dif-
ficulty accepting the reality of the loss and moving forward.2,9,10
Although PGD may be comorbid with depression or anxiety,
symptoms of PGD, such as intense longing for the deceased, dis-
belief about the death, and feeling that life lacks meaning without
the deceased, can be clinically distinguished from symptoms of
anxiety or depression, such as depressed mood, psychomotor
retardation, and changes in appetite or weight.2,9,10 Studies have
suggested that PGD may be as prevalent as depression or PTSD.2,9
Formerly referred to as both complicated grief and traumatic
grief, PGD may emerge in response to losses involving either trau-
matic or non-traumatic circumstances. It has been associated with
increased risk of negative mental and physical health outcomes,
including cancer, hypertension, cardiac events, adverse health
behaviors, and suicidal ideation.2,9
Several terms and subtypes have been used to describe grief
pathology in the bereavement literature, such as chronic grief,
inhibited grief, and delayed grief.3,6 While bereavement experts
have historically acknowledged and described pathological grief
responses, there continues to be debate about whether symptoms
of PGD constitute a distinct mental disorder.2,9 Normal and
abnormal grief responses are believed to fall on the same con-
tinuum. Pathological symptoms are intensified, prolonged, and

debilitating manifestations of acute grief symptoms. Based on a
significant body of empirical evidence, bereavement experts have
proposed that PGD be established as a distinct mental disorder in
future editions of the DSM, and the International Classification
of Diseases-11 (ICD-11) has proposed the inclusion of PGD as a
new mental disorder.13 The proposed diagnostic criteria10 are pre-
sented in Box 78.1. The criterion stating that the diagnosis should
not be made until at least six months have elapsed since the death
was developed to identify those individuals whose grief appears
to be persisting and who might benefit from intervention, while
remaining conservative and not being overly inclusive of those
individuals whose grief will resolve naturally with time.10 An
even more conservative timing criterion of requiring 12months to
have elapsed since the death is included in the proposed diagnos-
tic criteria for Persistent Complex Bereavement Disorder, which is
Box 78.1 Proposed Diagnostic Criteria for Prolonged
GriefDisorder
A.Event Criterion: Bereavement (loss of a significant other)
B.S eparation Distress: The bereaved person experiences
yearning (e.g., craving, pining, or longing for the deceased;
physical or emotional suffering as a result of the desired,
but unfulfilled, reunion with the deceased) daily or to a dis-
abling degree.
Cognitive, Emotional, and Behavioral Symptoms: The
C.
bereaved person must have five (or more) of the following
symptoms experienced daily or to a disabling degree:
1.Confusion about ones role in life or diminished sense of
self (i.e., feeling that a part of oneself has died)
2. Difficulty accepting the loss
3. Avoidance of reminders of the reality of the loss
4. Inability to trust others since the loss
5. Bitterness or anger related to the loss
6.Difficulty moving on with life (e.g., making new friends,
pursuing interests)
7. Numbness (absence of emotion) since the loss
8.Feeling that life is unfulfilling, empty, and meaningless
since the loss
9. Feeling stunned, dazed, or shocked by loss
Timing: Diagnosis should not be made until at least six
D.
months have elapsed since the death.
E.Impairment: The disturbance causes clinically significant
impairment in social, occupational, or other important
areas of functioning (e.g., domestic responsibilities).
Relation to Other Mental Disorders: The disturbance is not
F.
better accounted for by major depressive disorder, general-
ized anxiety disorder, or post-traumatic stress disorder.
Note:Proposed diagnostic criteria for PGD outlined by Prigerson
etal. in Prigerson HG, Horowitz MJ, Jacobs SC, etal. Prolonged grief
disorder:psychometric validation of criteria proposed for DSM-V and
ICD-11. PLoS Med. 2009 Aug;6(8):e1000121.
Chapter78 bereavement 589
currently listed under Conditions for Further Study in DSM-5
to stimulate further research in this area.12
Risk Factors
Most individuals who suffer a loss gradually adapt without
need for psychosocial interventions. Because resources are lim-
ited, it is important to triage those at heightened risk to clini-
cal service. Staff should hold a regular multidisciplinary death
review to identify family members at risk for psychopathology.13
Individuals at risk for psychiatric disorders in general are also
vulnerable to onset or recurrence during bereavement. Risk fac-
tors for negative bereavement outcomes are shown in Table 78.2.
PGD has been associated with being a spouse or parent of the
deceased, low social support, high levels of neuroticism, and inse-
cure attachment styles, emotional dependency on the deceased,
security-enhancing relationships, or a history of separation anxi-
ety (see reference 14 for a review). 2,9,14
SPECIFIC CIRCUMSTANCES
Sudden Death
Even when the course of illness is protracted, deaths may be
perceived as unexpected and sudden by the family because they
expected more time with the patient based on the prognosis given.
Unexpected deaths can also be due to secondary conditions,
including sepsis, pulmonary emboli, cardiac events, or hemor-
rhage. Individuals who perceive themselves as psychologically
unprepared for the loss are at greater risk for PGD and depression,
particularly when the death is perceived as violent.2,9,14 Clinicians
should assess family members understanding of the circum-
stances surrounding the death and should help the bereaved make
sense of any aspects that were perplexing.
Grief During Childhood
A childs ability to understand the permanency of death and
to express his or her grief varies according to developmental
stage. 3 The capacity for abstract thinking develops around ages
810. Open, age-appropriate discussion of the loss and sup-
port from surviving family and caregivers promotes adaptive
grieving. Clinicians may suggest participation in mourning
rituals, facilitation of emotional expression through, for exam-
ple, physical activities, and construction of a memory book to
preserve the childs bond to the deceased. 3 If severe grief reac-
tions persist beyond six months, professional evaluation may
be warranted.
Loss of a Child
Parents who suffer the loss of a child have potentially the most
profound grief reactions.3,15 Losing a child to cancer often occurs
after a lengthy battle with the illness. When caregiving for the
child has long been the priority, parents may become disconnected
from relationships and roles that were previously meaningful. The
intense pain of acute grief often deepens the sense of isolation.
Parents may find solace in connecting with other bereaved par-
ents through support groups. They may need additional assistance
coping with guilt related to concerns that they could have done
more to prevent the death. Finding ways to honor and memorial-
ize their childs life may help parents to move forward, and so staff
should facilitate this when possible.
590 Section XII psychological issues for the family

Table78.2 Risk Factors for Pathological Grief Outcomes

Category Description
Circumstances of death Perceived preparedness for loss
Untimely within the life cycle (e.g., death of child)
Sudden and unexpected (e.g., death from septic neutropenia during chemotherapy)

Traumatic (e.g., shocking cachexia and debility)

Stigmatized (e.g., AIDS or suicide)

Personal vulnerability History of psychiatric disorder (e.g., clinical depression, separation anxiety)
Childhood adversity (e.g., abuse, neglect, controlling parenting)
Personality and coping style (e.g., intense worrier, low self-esteem)

Attachment style (e.g., insecure)

Cumulative experience of losses

Nature of the relationship with the deceased
Family and social support
Overly dependent (e.g., security-enhancing relationship)
Ambivalent (e.g., angry and insecure with alcohol abuse, infidelity, gambling)
Family dysfunction (e.g., poor cohesion and communication, high conflict)
Isolated (e.g., new migrant, new residential move)
Alienated (e.g., perception of low social support)

Abbreviation:AIDS=acquired immunodeficiency syndrome.

INTERVENTIONS therapy techniques and psychotherapy approaches to support

Grief intervention research in recent decades has yielded incon-
sistent findings, likely due to variations in the populations tar-
geted and other aspects of methodology. To determine which
individuals might benefit from psychotherapy and counseling,
several systematic reviews and meta-analyses of grief interven-
tions have been conducted.3,1618 These studies are summarized
in Table 78.3. Grief interventions have generally yielded small to
moderate effects (as compared to the larger effects observed in
meta-analyses of psychotherapy in general). Adebate about how
these findings should be interpreted has risen in the field, with
some proposing that the majority of individuals do not require
interventions because their symptoms dissipate naturally,17
whereas others advocate cautious optimism about the utility of
grief counseling.19 Amid the variable findings, the result that is
consistent is that treatments targeting high-risk or symptomatic
individuals demonstrate stronger effects.16,20
Staff Support
Families have expressed that continuity of care is greatly appreci-
ated. Efforts to follow up with bereaved families after the patients
death, by offering condolences over the telephone, through a sym-
pathy card, or personal visits, by attending the funeral, or by con-
ducting annual commemoration services are generally welcome
when close relationships have been formed.
Individual Psychotherapy
Psycho-oncologists who provide one-on-one psychotherapy or
counseling often are a valued source of psycho-education about
grief reactions, which is often key to surviving family mem-
bers understanding the intense and complex array of feelings,
thoughts, and behaviors they experience; the varying trajectories
of reactions; and the important adaptive tasks that lie ahead.6,8,21
In addition, clinicians may consider a variety of specific grief
grieving family members.8,21
Supportive counseling generally facilitates an adaptive griev-
ing process, allowing for normalization, validation, emotional
expression, and processing, and a safe place to consider actions
related to moving forward with life.8
Psychodynamic and interpersonal psychotherapies are typically
longer term and focus on events from childhood and internal-
ized object relations that may be influencing the patients uncon-
scious conflicts and current related grief response. Individuals
who struggle with unresolved issues influenced by early rela-
tionships and conflicts, including those related to attach-
ment security, might benefit from a psychodynamic approach.
Interpersonal psychotherapy (IPT), a short-term (1216 weeks)
manualized treatment based in part on psychodynamic theory,
treats complicated grief by focusing on relationship problems
and is indicated for those who would benefit from improvement
in current interpersonal functioning.22
Cognitive behavioral therapy (CBT) approaches with bereaved
individuals focus on identifying and challenging maladaptive
thoughts and behaviors. Specifically, the goals are to modify
dysfunctional thinking that prevents adaptive processing of the
loss, exposure to avoided thoughts and situations, and engage-
ment in restorative tasks.3,22,23 It is indicated when individuals
are struggling with excessive guilt and anger, for those who are
avoiding reminders of the loss or resuming functional activities.
Mindfulness meditation and acceptance approaches may also
be used in CBT.21
Group Psychotherapy
One of the primary benefits of groups for the bereaved is the
mutual support offered by those who have experienced similar
losses. These individuals offer validation to one another, while
 Chapter78 bereavement 591

Table78.3 Systematic Reviews and Meta-Analyses of Bereavement Interventions

Authors
Wittouck, Van Autreve,
De Jaegere, Portzky, and
van Heeringen20
Currier, Neimeyer and
Berman16
Currier, Holland and
Neimeyer18
Schut, Stroebe, van den
Bout, and Terheggen3
Jordan and Neimeyer17
a The effect size absolute values are presented here, though the authors reported a standardized mean difference of 0.53 (negative sign demonstrating efficacy of the grief
No. of Studies Study Selection Effect Size Magnitude Possible Conclusions
14 Randomized controlled trials Treatment Treatment interventions for complicated grief appear
for prevention or treatment interventions:0.53a effective and gains increase over time
of complicated grief Prevention Limited support for prevention interventions for
interventions:0.03a complicated grief, though assessment tools differ
61 Randomized and 0.16b Generally all participants (intervention and control)
non-randomized studies improved over time
No-intervention control Clinical and self-referrals associated with better
group outcomes, though differences diminished at follow-up
13 Controlled studies of 0.14 Lack of support for efficacy of interventions
interventions for children Earlier intervention yielded stronger effects
Targeting distress associated with better outcomes
16 primary; Organized help Focused Low to modest effects Strongest effects with individuals exhibiting
7secondary; on treating grief psychopathology/pathological grief
7tertiaryc Methodologically sound Greater effects with self-referred
4 Reviews and meta-analyses N/A Generally low efficacy of interventions
Intervention may not be necessary for most bereaved
Need to develop new approaches
Need to improve methodology of studies

interventions) for treatment interventions at post-test; a larger effect of -1.38 was found at follow-up. The effect size of 0.03 was for prevention interventions at post-test; a smaller
effect of 0.13 was found at follow-up.
b The effect size of d=0.16 for randomized studies at post-treatment; for non-randomized studies (n=12), the effect size was d=0.51 at post-treatment. Tests of both effect size
estimates were statistically significant.
c Primary preventive interventions were open to all bereaved individuals. Secondary preventive interventions were open to high-risk individuals. Tertiary preventive interventions were
open to individuals with complicated grief or other psychopathology.

reducing the isolation that may occur during bereavement. Groups Anxiolytics and sleep aids may be particularly useful during the
also permit emotional expression and processing. Bereaved indi- acute phase of bereavement. Selective serotonin and noradrenergic
viduals can share effective coping strategies with one another.3,21 reuptake inhibitors may be used to reduce depressive symptoms.

Family Therapy Treatments for PGD

Using a family-centered approach throughout the course of cancer
treatment and palliative care permits providers to identify those
who might be at risk for poor psychological outcomes after death.
Kissane etal.1 developed Family Focused Grief Therapy (FFGT),
a 610 session preventive intervention for high-risk families that
begins during palliative care with the patient and continues with
surviving members after the patients death, fostering continuity of
care. Families are screened to identify those exhibiting risk factors
previously associated with negative bereavement outcomes, includ-
ing high conflict, low cohesion, and/or communication deficits.24
Dysfunctional families and at risk families, who display moder-
ate levels of disturbance, are targeted.1 The goals of FFGT are to
address families risk factors by facilitating mutual support and the
sharing of grief. In a randomized controlled trial (RCT) of FFGT,
significant decreases in distress and clinical depression 13months
after death were observed.1 The use of routine screening of fam-
ily functioning and implementation of this type of family-centered
intervention may assist high-risk families in oncology settings.25
Combined Psychopharmacological Approaches
Bereavement-related mental disorders are treated using standard
psychopharmacological and psychotherapeutic approaches. 3
Specific interventions to treat PGD include complicated grief
treatment (CGT), developed by Shear and colleagues, 22 which
is a 16-session manualized treatment using CBT principles that
involve psycho-education about the dual process model of coping,
exposure to avoided loss-related thoughts, retelling the story of
the death, imaginal conversations with the deceased, and devel-
opment of personal goals to assist with restorative behaviors. In
a RCT comparing CGT to IPT, a greater percentage of patients
responded to CGT (51%) than to IPT (28%), and time to response
was more rapid.22 More traditional CBT has also demonstrated
efficacy in reducing PGD as compared to supportive counseling in
a trial conducted by Boelen etal.23 They also found that exposure
was more potent than cognitive restructuring, and greater ben-
efits were observed when treatment began with exposure followed
by cognitive restructuring than when the order was reversed.23
CONCLUSIONS
Several disciplines have contributed to our understanding of
bereavement, but theoretical models are not mutually exclusive.
Integration of empirically supported models of intervention within
a biopsychosocial framework is desirable. To this end, efforts to
592 Section XII psychological issues for the family
bridge the substantial divide between clinicians and researchers
should continue.2,3 However, ethical concerns about the vulner-
abilities of bereaved individuals make it difficult to recruit and
design methodologically sound treatment outcome studies.
Clinically relevant controversies remain in the bereavement
field, including whether a distinction between normal and patho-
logical grief can be made and, moreover, whether PGD should be
established as a mental disorder in future editions of the DSM.
Psychotherapy for grief should target those individuals who are
at greatest risk and would likely benefit the most. Recognition of
resilience among the bereaved underscores adaptive pathways that
can be promoted, such as coping flexibility and adaptive forms of
meaning-making.11
The importance of continuity of care of families from end of life
to bereavement is gaining increasing recognition in palliative care.
Unfortunately, there is still a great need to establish infrastruc-
tures within these settings to facilitate support for the bereaved.
Establishing routine screening of patients, caregivers, and families
is critical to identifying those at risk and applying evidence-based
approaches to reducing the suffering of those in greatest need.
REFERENCES
1. Kissane DW, McKenzie M, Bloch S, Moskowitz C, McKenzie DP,
ONeill I. Family focused grief therapy:a randomized, controlled
trial in palliative care and bereavement. Am J Psychiatry. 2006
Jul;163(7):12081218.
2. Stroebe MS. Handbook of Bereavement Research and
Practice:Advances in Theory and Intervention. 1st ed. Washington,
DC:American Psychological Association; 2008.
3. Stroebe M, Hansson R, Stroebe W, Schut H, eds. Handbook of
Bereavement Research:Consequences, Coping, and Care. Washington,
DC:APA Books; 2001.
4. Boss P. Loss, Trauma, and Resilience:Therapeutic Work With
Ambiguous Loss. NewYork:Norton; 2006.
5. Lichtenthal WG, Nilsson M, Kissane DW, etal. Underutilization of
mental health services among bereaved caregivers with prolonged
grief disorder. Psychiatr Serv. 2011 Oct;62(10):12251229.
6. Parkes CM, Prigerson HG. Bereavement:Studies of Grief in Adult
Life, 4th ed. Hove, East Sussex, UK; NewYork:Routledge; 2009.
7. Maciejewski PK, Zhang B, Block SD, Prigerson HG. An empirical exami-
nation of the stage theory of grief. JAMA. 2007 Feb 21;297(7):716723.
8. Worden JW. Grief Counseling and Grief Therapy:AHandbook for the
Mental Health Practitioner, 4th ed. NewYork:Springer; 2008.
9. Lichtenthal WG, Cruess DG, Prigerson HG. A case for establish-
ing complicated grief as a distinct mental disorder in DSM-V. Clin
Psychol Rev. 2004 Oct;24(6):637662.
10. Prigerson HG, Horowitz MJ, Jacobs SC, etal. Prolonged grief dis-
order:psychometric validation of criteria proposed for DSM-V and
ICD-11. PLoS Med. 2009 Aug;6(8):e1000121.
11. Coifman KG, Bonanno GA. When distress does not become depres-
sion:emotion context sensitivity and adjustment to bereavement.
JAbnorm Psychol. 2010 Aug;119(3):479490.
12. American Psychiatric Association. DSM-5 Task Force. Diagnostic
and Statistical Manual of Mental Disorders, 5th ed. Washington,
DC:American Psychiatric Association.
13. Maercker A, Brewin CR, Bryant RA, etal. Proposals for
mental disorders specifically associated with stress in the
International Classification of Diseases-11. Lancet. 2013 May
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14. Burke LA, Neimeyer RA. Prospective risk factors for complicated
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Grief:Scientific Foundations for Health Care Professionals.
NewYork:Routledge; 2012:145161.
15. Wiener L, Gerhardt CA. Family bereavement care after the death of a
child. In:Kissane DW, Parnes F, eds. Bereavement Care for Families.
NewYork:Routledge; 2014:197219.
16. Currier JM, Neimeyer RA, Berman JS. The effectiveness of psycho-
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2003 Nov;27(9):765786.
18. Currier JM, Holland JM, Neimeyer RA. The effectiveness of
bereavement interventions with children:a meta-analytic review
of controlled outcome research. J Clin Child Adolesc Psychol. 2007
AprJun;36(2):253259.
19. Larson DG, Hoyt WT. What has become of grief counseling? an
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 SECTIONXIII

Cross-CuttingIssues

79 Cross-Cutting Gender-Based Issues 82 Disparities in the Impact of Cancer 612

in Cancer Caregiving 595 Rory C.Weier, Sarah A.Reisinger, and
Youngmee Kim, Karen Clark, and Electra D.Paskett
Matthew J.Loscalzo
83 DSM-5 and Psycho-Oncology 618
80 eHealth Interventions for Cancer John W.Barnhill and Anna L.Dickermann
Prevention and Control 600
Elliot J.Coups and Lee M.Ritterband
81 Negotiating the Interface of
Psycho-Oncology and Ethics 607
Marguerite S.Lederberg and Mark Lazenby
 CHAPTER79
Cross-Cutting Gender-Based
Issues in Cancer Caregiving
Youngmee Kim, Karen Clark, and Matthew J.Loscalzo
Cancer affects both men and women, although it is more preva-
lent among men, as one in two men are estimated to have cancer
in their lifetime, compared to one in three women.1 This pattern
of differential cancer incidence by sex has remained for the past
several decades, despite the fact that the number of persons diag-
nosed with cancer has continued to increase.1 In contrast, the sex
composition of those who provide unpaid informal care to cancer
patients and survivors has changed noticeably over the years. For
example, in a series of nationwide population representative tele-
phone surveys conducted by the National Alliance for Caregiving
and the American Association of Retired Persons, male caregivers
(of all kinds) were 25% of the caregivers surveyed in 1987, 28% in
1997, 39% in 2004, and 34% in 2009. Although these surveys are
not exclusively targeted to cancer caregivers, there is no obvious
reason that this overall trend of more males in the caregiver role
would not be applicable to cancer caregivers.
ROLE OF GENDER IN PSYCHOLOGICAL
ADJUSTMENT OF FAMILY CANCER
CAREGIVERS
As overall survival rates have increased, the quality of life of can-
cer survivors has become a more substantial concern.2 Among
diverse domains of quality of life, the psychological domain has
been studied the most. Heightened levels of anxiety and depres-
sion have been documented around the time of diagnosis and
treatment, which subsides by a couple of years post-diagnosis to
levels comparable to a non-cancer population. 3 Although height-
ened distress is normative in response to a major stressor such as
cancer diagnosis and treatment, there is a wide range of individual
differences in the levels of and recovery from distress.3
Gender has been identified as one of the key individual differ-
ences in how people respond to stressful life events such as cancer,
not only as patients but also as family members or close friends
(Table 79.1).4 Historically, most family caregiver studies (which
primarily focus on caregivers of persons with dementia or physi-
cal illness) have been dominated by females (wives and daughters).
Two early meta-analyses5,6 concluded that gender differences in
caregivers mental and physical health outcomes exist because
female caregivers deal with more stressful caregiving cases and
situations, yet have fewer social resources, compared with male
caregivers. These findings are consistent with several theoreti-
cal perspectives on gender differences, including the gender-role
socialization view,7 the gender-role expectation perspective,8 and
theories of labor market segregation and household labor.8,9
Two more recent meta-analyses,4,10 however, provided simi-
lar as well as contradictory findings. Hagedoorn and colleagues
meta-analysis4 examined 46 samples of couples dealing with can-
cer, in studies aimed at examining gender differences in psychologi-
cal distress. The authors concluded that females, whether as patients
or as caregivers, report greater levels of distress. This finding is con-
sistent with previous reviews that examined gender differences in
psychological distress, both without considering the role of being a
patient or caregiver11 and with consideration of the role difference.12
In contrast, Pinquart and Srensens meta-analysis10 examined
229 studies of caregivers of older adults (>60 years) who have
diverse conditions that require care. The authors examined gen-
der differences in caregiver stressors, social resources, and physi-
cal health. They found that women provided more caregiving
hours, helped with more caregiving tasks, and assisted with more
personal care. Women also reported higher levels of caregiving
burden and depression, and lower levels of subjective well-being
and physical health. When gender differences in stressors (e.g.,
hours of caregiving) and resources (e.g., social support) were con-
trolled for, however, the size of gender differences in depression
and physical health reduced to levels that have been observed in
non-caregiving samples. Because only six studies included in this
meta-analysis exclusively targeted cancer caregivers, the gener-
alizability of findings from this meta-analysis to cancer caregiv-
ers is limited. However, the key conclusion from this large-scale
meta-analysisthat individuals stressors and resources, beyond
gender per se, are critical contributors of caregivers quality of life
outcomesis highly likely to be applicable to cancer caregivers.
ROLE OF GENDER IN INTERDEPENDENT
RELATIONSHIPS BETWEEN PATIENTS
ANDCAREGIVERS
One key factor that plays a nuanced yet important role in various
aspects of psychological and physical adjustment to cancer is the
interdependence between adult cancer patients and their family
caregivers. Cancer patients and their caregivers report moderately
596 SectionXIII cross-cuttingissues
Table79.1 Key Findings in and Implications for Psychosocial Care Related to Gender and Cancer Caregiving
Key Findings
Lifetime cancer incidence ratesbysex
Men 1 outof2
Women 1 outof3
Trends in cancer caregiversbysex
Increase in % of males
Psychological distress and physicalhealth
Younger adults, females, persons who have premorbid psychological disorders,
spousal caregivers, and caregivers who perceive caregiving as overwhelming,
who provide for end-of-life care, and who lack social support have reported
greater distress
Caregivers greater distress relates not only to their own but also to their
patients poorer mental and physical health
correlated levels of psychological distress (r=.29 and.35 from two
meta-analyses), regardless of the gender of the patient.4,12 These
findings suggest that cancer has a similar psychological impact
on both patients and caregivers, and that there is concordance in
emotional well-being betweenthem.
The findings also reinforce the importance of gaining a better
scientific understanding of how women and men emotionally
influence each other when they are under stress. In these analyses,
the caregivers greater distress was related to his or her patients
poorer mental and physical health. The patients greater distress
was related to his or her caregivers poorer mental and physical
health. These cross-over effects were above and beyond ones own
(either patient or family caregiver) distress being related to his or
her own quality of life.13,14
Most of the studies examining interdependent relationships
have looked at breast or prostate cancer patients and their het-
erosexual spousal caregivers. However, one study examined this
interdependent relationship among mothers with cancer and their
adult caregiving daughters.15 In these female dyads, each persons
psychological distress was the strongest predictor of her own men-
tal and physical health. In addition, the mothers (patients) greater
distress was related to the daughters (caregivers) better mental
health but poorer physical health.
Another recent study examined the interdependent relation-
ships with colorectal and lung cancer patient-caregiver dyads.16
As colorectal and lung cancers are not sex-specific, it was possible
to explore the gender cross-over effect independent of the patient
versus caregiver role cross-over effect. Findings were consistent
with previous studies, showing that each persons depressive
symptom level was uniquely associated with his or her own con-
current mental and physical health. In addition, female patients
depressive symptoms were also related to better mental health
and poorer physical health of their caregivers of any gender, par-
ticularly when the pairs depressive symptoms were at a similar
elevated level. On the other hand, male patients elevated depres-
sive symptoms were related to their caregivers (mainly females)
poorer mental health.
Implications for Psychosocial Care
Increase awareness on the social trends in cancer caregiving by sex
Target at-risk subgroups of caregivers vulnerable to poorer mental and
physicalhealth
Screen both patients and caregivers for distress and unmetneeds
Gender-based psychosocial interventions, recognizing differences between
genders while providing gender-specific skills training about how to get the
best out of eachother
Encourage mutual support, seeking support from other family and friends,
and disease-specific supportgroup
Suggest at least one brief session with a licensed mental health professional
if moderate to high distress is present
These results provide valuable evidence that quality of life in
cancer patients/survivors cannot be properly understood in a vac-
uum, ignoring the caregivers influence on the patients, and vice
versa. Although the role of caregivers gender in patients quality
of life in these studies remains uncertain due to the small number
of male caregivers for male patients, findings suggest that man-
aging distress and depressive symptoms is crucial not only for
female patients own mental health but also for the mental health
of their caregivers. For female patients who experience elevated
anxiety and depressive symptoms or have a premorbid psycho-
logical disorder, psychosocial programs should target efforts to
reduce psychological distress in both patients and caregivers.17,18
Moreover, such programs should also seek to educate male care-
givers about how to effectively provide emotional support to their
female patients. Educating caregivers regarding how best to uti-
lize alternate or additional resources for obtaining emotional sup-
port for themselves may also be beneficial in protecting caregivers
from compromised quality of life due to cancer in the family.
EMERGING GENDER ISSUES IN
CANCERCAREGIVING
Trajectory of Cancer Caregiving
Cancer caregiving has a trajectory and corresponding burdens to
the family caregivers that differ from those of other chronic dis-
eases.19 Family members of cancer patients must face the sudden
diagnosis of cancer in the family, which brings immediate tur-
moil, as cancer is typically perceived as a life-threatening disease.
In addition, family caregivers are on call throughout different
phases of cancer survivorship as the patients need for care tends
to be sporadic, although it peaks around the time of diagnosis and
treatment, and again at the end-of-lifephase.
Cancer caregivers also often move in and out of caregiving over
several years during the care recipients illness trajectoryas the
cancer can remit for years, only to recur.20 Some caregivers are
actively involved in cancer care several years after the initial diag-
nosis, due to recurrence, a secondary cancer, the survivor needing

help to manage long-term treatment side effects, or for end-of-life
care. To be actively providing care years after the initial diagnosis
must be especially stressful, because it brings back all the origi-
nal distress in addition to the current difficulties of caregiving.20
Other caregivers become bereaved when the patients survivor-
ship but not the caregivers caregivership ends. Otherwise, many
survivors are in remission several years after the diagnosis, so
their family caregivers became former caregivers.
Not surprisingly, due in part to this great variation in the illness
trajectory, uncertainty and fear of recurrence have been hallmarks
of psychological responses throughout cancer survivorship and
caregivership. Although evidence investigating the precursors and
consequences of uncertainty and fear of recurrence among both
patients and family caregivers has recently become available,21,22
the role of gender in these associations has not been examined,
mainly due to lack of statistical power. This is another broad topic
in which gender and gender-related factors may play important
roles in various aspects of the quality of life of caregiver population.
It will be fruitful for future studies to address numerous unan-
swered questions. For example, whether one gender of caregiv-
ers is more likely than the other to be called upon to carry out
the caregiver role years after the initial cancer diagnosis, for
long-term effects, recurrence, or a second cancer, or palliative
care; to what extent gender differences found in existing literature
that are mainly during the time of diagnosis and treatment would
be replicated at the different phases of the illness; and how gender
plays a role in bereaved family members adjustment, particularly
becoming a single parent.
Life-Span Trajectory and Caregiving
Two other understudied populations in cancer caregiving research
are the youngest (grandchildren) and the oldest (grandparents
and great-grandparents) caregivers. To our knowledge, systematic
investigation of the caregiver role in any disease does not cur-
rently exist among the oldest old (>85years), whose population is
expected to increase 151% between 2005 and 2030, compared to
a 104% increase in the overall population aged 65 and over and a
21% increase for the population under age65.23
At the other extreme, there appears to be only one study, to
date, on the youngest caregivers, which targeted child caregiv-
ers (8 to 18years old) nationwide.24 This study found that there
were 1.3 to 1.4million child caregivers, almost evenly distributed
in three age groups (811, 1215, and 1618) and between gen-
ders (49% male). The child caregivers were more likely to live in
households with lower incomes and less likely to have two-parent
households. Child caregivers were caring mainly for their mother
(28%), grandmother (31%), or sibling (11%). The most common
conditions of care recipients were Alzheimers disease or dementia
(18%), disease of the heart, lung, or kidneys (16%), arthritis (14%),
and diabetes(14%).
Child caregivers, compared with non-caregiving children,
showed greater anxiety and depression and greater antisocial
behaviors, and reported that caregiving responsibility led them to
miss school or after-school activities and kept them from doing
schoolwork. Child caregivers well-being was adversely affected
primarily by performing one or more personal care tasks, living in
the same household with the care recipient, and living in a minor-
ity household. Girls (21%) more than boys (10%) were more likely
to report that their care recipients confide in them, which was
Chapter79 cross-cutting gender-basedissues 597
also more common in ethnic minority households (31% vs. 12%).
Boy caregivers, compared with non-caregiving boys, seem to have
more difficulties in emotional development, as they report more
often feeling sad (52% vs. 38%) and restraining their emotional
expression (26% vs.11%).
Whether and how these patterns of gender differences in care-
giving at this early stage would exert long-term impact on the
caregivers life need to be investigated. Furthermore, the role of
gender and its interplay with age, cohort/generation, and life span
are currently unknown. Diverse aspects of quality of life other
than psychological health, such as healthy lifestyle behaviors, and
physical and spiritual (meaning-making) adjustment to cancer in
the family, have also been understudied.
Heightened distress, compromised physical health, and search-
ing for meaning in the adverse event of having cancer in the
family are normative stress responses. Whether and how these
responses might take a toll on the caregivers long-term health
remain unknown. In fact, there is a growing interest and provoca-
tive research in all of these areas as it relates to sex, gender, health,
and illness. 25 Prospective longitudinal, dyadic (including both
patients and caregivers) studies are much needed, as they will pro-
vide valuable information for identifying subgroups of caregivers
and patients earlier in the illness and life-span trajectory who are
at risk for developing poor quality of life and are vulnerable to
premature morbidity and mortality outcomes yearslater.
Gender-Based Clinical Psychosocial Programs
The powerful influence of gender is seen in clinical practice in
many ways but is seldom channeled therapeutically. People typi-
cally make sex-based judgments in interpersonal and medical
settings, which often lead to prejudice and miscommunication.
Thus, clinical programs target channeling sex-based inclinations
to therapeutic ends, not static destinations. The Single Fathers
Due to Cancer and the Breast Surgery Partners Clinic are two
outstanding showcases of gender-based clinical psychosocial pro-
grams. The primary commonality of these programs is the aware-
ness of and therapeutic intent to bolster relationships and promote
mutual health at a time of high vulnerability for core relationships
of the people affected, in realtime.
The Single Fathers Due to Cancer program (www.singlefathers-
duetocancer.org)26 was based on the fact that parental loss in early
childhood is mainly due to illness of the parent and that the death
of a mother has particularly powerful psychological implications
for the surviving family. Fathers are burdened with coping with
the loss of a partner (most commonly after a prolonged illness)
while simultaneously trying to raise their children in the after-
math of this tragedy. This program comprises a highly resourced
website open to the public, ongoing peer support, and monitor-
ing of the supportive care needs of widowed men. The program
is strengths-based, bringing together what is empirically known
about the links between how a father copes with the loss and the
emotional adjustment in the children with clinical experience to
best foster acceptance, healing, and emotional growth. It is widely
recognized that men are not socialized to be as nurturing as are
women, and that abruptly adapting to the emotional needs of chil-
dren while managing ones own grief is a significant challenge. The
Single Fathers Due to Cancer program gives men the tools, sup-
port, and confidence to grow into roles that transcend socializa-
tion and to experience a more complete experience of fatherhood.
598 SectionXIII cross-cuttingissues
Another noteworthy program is the Breast Surgery
Partners Clinic (http://breakthroughs.cityof hope.org/
partners-breast-cancer/) program, which helps women and men
to get the best out of each other when one or both have cancer,
by identifying and enhancing the inherent strengths of individu-
als and couples. The Breast Surgery Partners Clinic provides a
30-minute psycho-educational program just prior to the time
when the woman and her partner (same or opposite sex) meet with
the surgeon for the first visit. The counselors are two social work-
ers, one female and one male, but the group could be facilitated by
any licensed mental health professional with experience. The ses-
sion is highly focused on understanding the nature and perceived
integrity of the patients support network, especially with the
partner. The essential background information (both self-report
from the patient and partner and automated documentation from
the medical records) of the psychosocial and medical situation is
obtained using touchscreen technology from both the patient and
partner. The integrated information then guides comprehensive
tailored cancer care. This program has been used for addressing
numerous unmet needs across different survivorship trajectories,
including distress management, relationship issues with the part-
ner and other family members and close friends, psycho-education
about survivorship in general and for special subgroups (based on
sexual orientation, ethnicity, age, etc.), improving healthy life-
style behaviors (nutrition and physical activity), and preparing
for impending medical appointment and communication with
healthcare professionals.
For example, to address participants concerns related to rela-
tionship distress caused by the partners cancer, the two coun-
selors role-model how to engage in respectful communications.
Participants receive tips from research publications, anecdotes
from former patients and their partners, and the clinical experi-
ence of the counselors. Both the patients and partners are also
provided short lists of behaviorally focused actions that they
can take (e.g., being honest and open about fears and feelings,
especially about scary outcomes, including death; listening with
an open mind and heart to the others experience without judg-
ment or trying to fix it) and actions that are inherently under-
mining of resilient relationships (e.g., avoidance of emotionally
charged information, isolating behaviors). Finally, there are spe-
cific biopsychosocial interventions (medicines, physical activity,
nutrition, psychological interventions, information, education,
etc.) that are essential to maximizing the health of women,
men, and society, which are in use today. All of the information
discussed during the session is given to both the patient and
partner in writing to share with their family. In those situations
where the patient and/or partner requires further assessment
or follow-up appointments, they can see the counselor again or
another member of the team (most commonly a social worker,
child life educator, psychiatrist, psychologist, or chaplain). The
high satisfaction and effectiveness of this program over the
past six years among patients, partners, and surgeons has been
documented. 27
CONCLUSION
The scientific community is slowly catching up to what the pub-
lic has known for many years: sex and gender matter in many
wayshow we see and treat ourselves, how we are treated by
others, societal expectations, and as a major determinant of full
biopsychosocial health. Never before have women and men had
the opportunity to redefine what it means to be evolving sentient
beings. In this rapidly changing world, where rigid traditional
support systems are so quickly giving way to conscious choices,
men and women have the opportunity to live a life chosen over the
one they inherited. Sex is a given at birth, but gender is lived. Both
are inclinations but not destinations.
Serious life-threatening illness brings into sharp relief the
assigned social roles (as we see in cancer caregiving), but the loos-
ening of these putative boundaries is happening all around us,
especially in the expansion of roles for both women and men. It
is now time for healthcare professionals to expand their under-
standing of the existing science and therapeutic repertoire to cata-
lyze and release the creativity and resiliency that is inherent yet
dormant in channeling sex and gender inclinations to a destina-
tion that promotes personal and societal health.
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 CHAPTER80
eHealth Interventions for
Cancer Prevention and Control
Elliot J.Coups and Lee M.Ritterband
In this chapter, we examine interventions that utilize eHealth
approaches to address diverse cancer prevention and control
issues. This chapter provides an overview while referring readers
to other sources for more in-depth examination of the research
literature pertaining to eHealth cancer prevention and control
interventions13 and eHealth interventions more generally.4 Alist
of eHealth-related resources is provided in Table80.1.
WHAT ARE eHEALTH INTERVENTIONS?
The term eHealth has been defined in many different ways. For
this chapter, we adopt one of the earlier definitions of eHealth that
has also been used to guide a prior review:3 ... the use of emerg-
ing information and communication technology, especially the
Internet, to improve or enable health and health care.5 The rapid
growth in accessibility and usage of the Internet and other infor-
mation and communication technologies has been accompanied
by a surge in the development and testing of eHealth interventions
targeting an array of health and healthcare issues.
eHealth interventions utilize a wide range of technology devices
and functions (see Box 80.1). Not surprisingly, the Internet is
the most widely used, with access increasingly being gained via
mobile technology platforms such as mobile phones and tablet
computers. There are a host of body sensors and monitors avail-
able for use in eHealth research, including wireless devices that
assess weight, sleep, physical activity and inactivity, and diet
and nutrition. eHealth cancer prevention and control interven-
tions frequently utilize a combination of technology devices and
functions, such as using a wireless physical activity monitor that
interfaces with a mobile phone, wireless scales that automatically
upload body weight to an online program, or employing social
media and video chat on a tablet computer.
eHealth interventions vary considerably with regard to their
nature and functionality, for example from the delivery of a few
text messages to more complex interventions that employ multi-
ple devices and a variety of associated functions over an extended
period of time. As shown in Table 80.2, the use of information and
communication technologies greatly facilitates the use of several
approaches designed to enhance users experience and engage-
ment with eHealth interventions,6,7 which may increase interven-
tion usage and impact.
A key advantage of eHealth intervention approaches is that
they can be readily employed without geographic constraints,
thus greatly enhancing their ability to reach diverse populations
in their everyday environments in real time. They may facili-
tate the delivery of interventions to populations that experience
cancer-related disparities based on geographic region (e.g., rural
versus urban) or sociodemographic characteristics (e.g., race/
ethnicity, socioeconomic status). eHealth interventions can
also make use of automation and tailoring to maximize fidelity,
ensuring that an intervention is delivered as intended, as well
as providing an intervention that best fits the end users needs.
Additionally, data regarding the nature and extent of individuals
use of eHealth interventions (e.g., webpage views, use of subcom-
ponents of a mobile app, or number of text messages sent) can be
assessed automatically and unobtrusively. eHealth interventions
have the potential to be cost-effective because the incremental cost
of delivering such interventions is typically dramatically reduced
once initial development costs have been incurred.8
THE ROLE OF eHEALTH INTERVENTIONS IN
CANCER PREVENTION AND CONTROL
eHealth interventions have the potential to impact health and
healthcare across the cancer control continuum, including pre-
vention, detection, treatment decision-making, active treatment,
survivorship, and end-of-life experiences. The interventions may
be directed at diverse cancer-related behaviors and outcomes,
including health-promoting and damaging behaviors (e.g., physi-
cal activity, diet and nutrition, obesity, smoking, excess alcohol
intake, sun safety, and indoor tanning), provision of genetic
risk counseling, cancer screening and early detection behaviors,
treatment adherence, symptom management (e.g., fatigue, pain,
sleep), neurocognitive deficits, and psychological (e.g., anxiety,
depression, and distress) and physical well-being (e.g., physical
functioning). While the focus here is primarily on such behaviors
and outcomes, eHealth interventions may also target the provi-
sion of cancer-related care, such as facilitating communication
among healthcare providers and patients, and promoting care
coordination and continuity.9,10 eHealth cancer prevention and
control interventions may be utilized as stand-alone approaches,
integrated into existing clinical systems or technology platforms
 Chapter80 eHealth Interventions 601

Table80.1 Selected eHealth Resources

Resource Web Address

Organizations/Conferences
American Medical Informatics Association www.amia.org
American Telemedicine Association www.americantelemed.org/education-meetings/ata-meetings
Connected Health Symposium symposium.connected-health.org
e-Health Conference www.e-healthconference.com
Games for Health www.gamesforhealth.org
Health 2.0 Conference www.health2con.com/events
iHealth www.ihealthconference.org
International Conference on e-Health www.ehealth-conf.org
International Conference on eHealth, Telemedicine, and Social Medicine www.iaria.org/conferences/eTELEMED.html
International Conference on Pervasive Computing Technologies for Healthcare pervasivehealth.org
International Society for Research on Internet Interventions www.isrii.org
Medicine 2.0 Congress www.medicine20congress.com
mHealth Summit www.mhealthsummit.org
Wireless Health www.wirelesshealth2014.org
Journals
Computers in Human Behavior www.journals.elsevier.com/computers-in-human-behavior
Cyberpsychology, Behavior, and Social Networking www.liebertpub.com/cyber
Games for Health Journal www.liebertpub.com/g4h
Health Informatics Journal jhi.sagepub.com
International Journal of Medical Informatics www.ijmijournal.com
Internet Interventions www.journals.elsevier.com/internet-interventions
Internet Research www.emeraldinsight.com/journals.htm?issn=1066-2243
Journal of the American Medical Informatics Association jamia.bmj.com
Journal of Computer-Mediated Communication onlinelibrary.wiley.com/journal/10.1111/(ISSN)1083-6101
Journal of Consumer Health on the Internet www.tandfonline.com/loi/wchi20
Journal of Medical Internet Research www.jmir.org
Journal of Mobile Technology in Medicine www.journalmtm.com
Journal of Telemedicine and Telecare jtt.sagepub.com
Telemedicine and e-Health www.liebertpub.com/tmj

(e.g., electronic medical records, patient portals), or can aug-
ment non-eHealth interventions. eHealth interventions are often
complex in nature, but that is not always necessary or desirable.
Overall, selection of the eHealth intervention modality (or modal-
ities) to be used in a particular situation should be guided by a
consideration of the interplay of a host of factors, including the
behavior(s) and/or outcome(s) of focus, the desired functionality
of the intervention, the cancer-related population(s) of interest
(including any pertinent subgroups), and the relevant setting(s) in
which the intervention will takeplace.
TYPES OF eHEALTH INTERVENTIONS
Internet Interventions
Internet interventions are typically defined as behaviorally based
programs, grounded on proven face-to-face structured treat-
ments. There is a continuum of support in these programs, from
human-supported to fully automated systems. These interven-
tions are often personalized and tailored to the user based on
self-reported data. And the more effective programs tend to take
advantage of all the multimedia components available on the web,
including high levels of interactivity and good use of graphics,
animations, audio, and video. Many also provide follow-up and
feedback not only to the user but to a clinician or family member.11
There are many types of Internet interventions, focused on a
huge number of behavioral and mental health disorders. These
include programs focused on such diverse areas as cancer, diabetes,
cardiovascular disease, substance abuse, eating disorders, pain,
and insomnia, as well as depression, anxiety, and post-traumatic
stress disorder. The Australian National University hosts a partic-
ularly useful website, called Beacon, that lists and rates hundreds
of Internet interventions at all levels of development (beacon.anu.
edu.au).
Internet interventions have been found to be very effective.
There have already been quite a few meta-analyses conducted
showing robust findings and good effects. For example, Barak and
colleagues12 published a widely cited review and meta-analysis of
92 Internet-based psychotherapy interventions across a variety of
602 SectionXIII cross-cuttingissues

disorders. Strong effects for many of the problem areas were found,
Box 80.1 Technology Devices and Functions Commonly Used
ineHealth Interventions with an overall mean weighted effect size of.53. This medium effect
is similar to what is found for traditional face-to-face therapy. In
Technology Devices fact, 14 of the studies directly compared Internet interventions to
Body sensors and monitors face-to-face treatment, and no differences in effectiveness were
Desktop computers found betweenthem.
Landlinephones A good example of an Internet intervention that has been devel-
Laptop computers oped and evaluated is SHUTi, or Sleep Healthy Using The Internet,
Mobilephones a program for adults with insomnia. SHUTi is a fully automated,
Portable media players tailored, and engaging web-based program that users can com-
Tablet computers plete in as little as six weeks. There are six core units in SHUTi,
Video-game consoles covering the primary tenets of cognitive behavioral therapy for
insomnia, including sleep restriction, stimulus control, cognitive
Technology Functions restructuring, sleep hygiene, and relapse prevention. Auser goes
Digitalgames through the interactive cores, one each week, while also entering
E-mail daily sleep diaries into the system. Algorithms process the entered
Instant messaging data and provide a tailored experience to each user. Behaviorally
Interactive voice response based strategies and techniques are taught throughout, while
Internet/Web automated e-mail prompts encourage program utilization.
Multimedia messaging SHUTi has been tested in a number of trials, including one with
Podcasting cancer survivors with insomnia.13 Insomnia is particularly prob-
Social networking lematic for cancer survivors, with 63% experiencing disturbed
Software applications sleep and more than 30% meeting criteria for insomnia. Poor sleep
Text messaging may contribute to cancer-related fatigue, and it has been found to
Videochat be associated with mood disturbances, decreased quality of life,
Virtual reality and even immunosuppression. In the trial with cancer survivors,
who were on average experiencing sleep difficulties for more than
five nights a week for more than six years, very encouraging results
were found. Participants in the SHUTi group showed significant
Table80.2 Features of eHealth Interventions That Promote User improvements compared to those in a no-treatment control group
Experience and Engagement in their perceived severity of insomnia, sleep efficiency (how much
time they were asleep when in bed), ability to fall asleep more
Feature Description quickly, soundness of sleep, and feeling restored upon awakening.
Personal tailoring The content and approach of the intervention In addition to these significant sleep improvements, secondary
of the intervention may be tailored to each individual according to gains were noted, including reductions in fatigue, depression, and
any number of factors, including demographic and anxiety, and improvements in quality of life. Although there were
sociocultural characteristics, as well as attitudes, some limitations of the study, such as small sample size, homo-
beliefs, symptoms, behaviors, and other outcomes. geneity of the sample, and use of a no-treatment control, it dem-
Multimedia content Such content may include audio, video, graphic, text, onstrates that an Internet intervention may be a viable treatment
and animated material. option for cancer survivors experiencing insomnia.
Interactive activities These may include learning modules, skills practice, Mobile Applications
quizzes, games, and self-monitoring.
The widespread availability and usage of smartphones in recent
Provision of feedback This may be automated or involve human support years has been accompanied by a proliferation of health-related
(e.g., from a health educator or counselor).
mobile applications (or apps) for different mobile operating sys-
Interactions with Approaches to facilitate such interactions may tems (e.g., iOS, Android, and Windows Phone). Mobile apps can
other users include online forums, chat rooms, message boards, harness numerous smartphone components to monitor and pro-
or peer discussion groups. mote changes in behaviors and other outcomes, including the
User-driven Users can select features or content to include or camera, accelerometer, GPS, Bluetooth (to connect wirelessly with
functionality exclude. other devices and equipment), and the Internet, as well as text
Dynamic, adaptive, The intervention approach or content may be and multimedia messaging. Given the time, cost, and resources
non-static content updated, removed, or supplemented on an ongoing required for researchers to develop, pilot test, refine, and conduct
basis, triggered at specific points in time (e.g., at a studies of the efficacy of mobile apps, it is perhaps not surprising
certain time of day or after a certain number of hours that most research to date (as of 2014)on mobile apps related to
or days), after a certain event (e.g., after completing cancer prevention and control has focused on apps that are com-
specific intervention components), or based on a mercially available (as opposed to apps that were developed spe-
predetermined threshold in an outcome of interest cifically for research purposes).
(e.g., a symptom, health behavior, or measure of
Systematic reviews of the commercial mobile apps targeting
psychological or physical well-being).
behaviors and outcomes of relevance to cancer prevention and

control, including those focused on smoking,14 physical activity,15
weight loss,16 and chronic pain,17 indicate that such apps typi-
cally fail to employ appropriate theory- and/or evidence-based
approaches. Additionally, research examining the efficacy of such
apps to generate changes in behaviors and other outcomes is nota-
bly lacking. Thus, the proverbial health-related app cart has been
put before the horse, with such apps being downloaded and utilized
by consumers with little evidence regarding their efficacy. It also
hard for consumers to evaluate the source and potential validity
of cancer-related mobile apps. Bender and colleagues1 identified
295 commercial mobile apps that addressed issues broadly related
to cancer prevention, early detection, or management, 64.1% of
which did not identify the organizational affiliation of the devel-
opers. The majority of the apps were purely informational (26.4%)
or focused on raising cancer awareness (32.2%), and fewer than
15% focused on promoting cancer-related health behaviors or
facilitating early disease detection. None of the descriptions of the
apps mentioned any type of evaluation or study related to theapp.
Bender et al.1 did not identify any peer-reviewed studies of
cancer-related mobile apps (as of June 2012). Several relevant
studies have since been published, including ones on mobile apps
for smoking cessation,18 sun-protection behaviors,19 and breast
self-examination.20 Overall, although mobile apps have the poten-
tial to address cancer prevention and control behaviors and other
outcomes, there is limited evidence regarding the efficacy and
potential reach of such apps to date. We anticipate that this will be
an area of considerable research growth in the near future.
Text Messaging
Despite its relative simplicity, text messaging is a potentially pow-
erful tool to deliver effective cancer prevention and control inter-
ventions that address a host of behaviors and outcomes across
different settings and populations. Text messaging is in wide-
spread use, typically of low cost and burden to the sender and the
recipient, and can be personally tailored to individuals in their
everyday environment. Although the content of each text mes-
sage is limited to 160 characters, interactive links can be included
(e.g., to websites), and multimedia messages can be delivered that
include audio, images, or video. Arecent meta-analysis of 19 ran-
domized controlled trials in 13 countries of text messaging-based
health-promotion interventions reported a weighted mean effect
size of d=.329 (95% CI=.274.385) across health outcomes.21 and 46 minutes in the comparison group), and there was no differ-
Alarger effect size was found for interventions targeting physi-
cal activity and smoking cessation (versus other outcomes), for
interventions that included personally tailored messages, and
those that sent text messages using a varied, as opposed to a fixed,
frequency. There was no difference in the efficacy of the interven-
tions according to whether they utilized a text-only approach or
used texting plus print materials, a website, or human counseling.
A particularly noteworthy study of an efficacious text mes-
saging intervention to promote sunscreen use was conducted by
Armstrong and colleagues.22 Adult participants were randomized
to receive either no text messages or two daily text messages over a
six-week period. For participants assigned to receive the two daily
text messages, one message provided the weather forecast and the
other acted as a prompt to apply sunscreen on that day. Adherence
to the daily use of sunscreen was assessed using an innovative
electronic monitor that automatically notified the investigators
every time the cap was opened on a tube of sunscreen. Participants
Chapter80 eHealth Interventions 603
who received the text messages used sunscreen, on average, 56.1%
of the study days, compared to 30.0% among those who did not
receive text messages. This near doubling of adherence is impres-
sive, particularly since the text messages were not tailored and
were one-directional (participants did not send text messages).
This study also highlights the use of automated messaging as a
method for providing unobtrusive feedback about participants
behavior, although the monitor only provided information about
when the sunscreen tube was opened, as opposed to how much
sunscreen (if any) was applied.
Social Networking
Social networking sites such as Facebook and Twitter are used
on a regular basis by large numbers of individuals, often feature
engaging content, and can facilitate communication and sup-
port among users. However, relatively few research studies have
tested the use of online social networks to promote health behav-
ior change. Arecent systematic review found 10 published stud-
ies of online social network health behavior change interventions
as of December 12, 2012. 23 The interventions varied in length
from five days to six months, targeted physical activity, dietary,
and weight loss behaviors in diverse populations, and used a
social network alone or in tandem with other approaches, such
as activity monitors, scales, websites, or printed materials. Many
of the studies experienced low participant use of the intervention
(around 5%15% of intended usage), and there were mixed results
with regard to the effects of the interventions on health behavior
change.
In the context of the current chapter, a randomized controlled
trial of an intervention to promote moderate-to-vigorous inten-
sity physical activity among young adult cancer survivors (aged
2139years) using Facebook is worth highlighting.24 Participants
were recruited using a variety of methods (including flyers,
e-mail, Twitter, and Facebook) and were randomly assigned to
receive a 12-week Facebook-based intervention, called FITNET
(which included access to a website that provided feedback and
facilitated goal setting and self-monitoring), or a Facebook-based
self-help comparison. Based on self-reported physical activity at
baseline and 12 weeks later, participants in both groups increased
the number of minutes spent per week in moderate-to-vigorous
intensity physical activity (by 67 minutes in the FITNET group
ence between the groups in the increase in such activity. However,
participants in the FITNET group did report greater increases
in light intensity activity compared to the comparison group.
Participants reported varying levels of use and engagement with
the interventions, with more than half in each group posting one
or no Facebook messages over the 12-week study period. Of note,
feedback regarding the intervention was similarly positive for par-
ticipants in both groups. Overall, the study demonstrates the fea-
sibility and potential efficacy of using a Facebook-based approach
to promote physical activity among young adult cancer survivors.
DigitalGames
There is a growing literature on the role of digital (or video)
games in promoting a wide variety of physical and psychological
health-related outcomes.25 Such games are commonly referred to
as serious games, in order to distinguish them from games that
focus solely on entertainment. In the context of cancer prevention
604 SectionXIII cross-cuttingissues
and control, serious digital games may target outcomes such
as smoking cessation, physical activity promotion, treatment
decision-making, treatment adherence, and pain management.
Serious games typically attempt to utilize strategies to promote user
engagement and feature a variety of approaches to promote learning
and behavior change, including self-monitoring, goal setting, skills
development, problem-solving, social interactions (e.g., with other
game users), and the provision of rewards and tailored feedback.
Serious digital games have primarily targeted pediatric and young
adult populations. For example, Kato etal.26 conducted a random-
ized controlled trial of a computer video game called Re-Mission
to improve treatment adherence and other behavioral outcomes in
adolescents and young adults with cancer. Individuals assigned to
play the Re-Mission game and a commercial video game had greater
adherence to prophylactic antibiotics and oral chemotherapy regi-
mens compared to those who only played the commercial video
game. Cancer-related self-efficacy and knowledge were also higher
in the Re-Mission group, but the intervention did not significantly
impact quality of life, stress, or control beliefs. Serious games have
also been used with older populations. For example, Krebs and col-
leagues27 piloted an interactive video game to enhance adults ability
to cope with smoking urges, and Reichlin and colleagues28 exam-
ined the feasibility of a serious game to facilitate treatment decisions
among middle-aged and older men with prostate cancer.
Interactive Voice Response
Interactive voice response (IVR) is a telephone-based, automated
technology that allows users to listen and respond to verbal
prompts and questions using voice recognition or via touch-tone
using a telephone keypad. IVR allows for the provision of tai-
lored feedback, only requires users to have a telephone (landline
or mobile phone), is accessible for individuals with low literacy
levels, and is of relatively low cost to implement (after the initial
fixed programming costs have been incurred). IVR has been used
for health-promotion purposes for more than 20years, and there
is evidence that it can promote smoking cessation as well as mam-
mography and colorectal cancer screening.29
VideoChat
Until the relatively recent introduction of services such as Skype,
FaceTime, and Google+ Video Hangouts, live video chat (or vid-
eoconferencing) was accessible to healthcare providers and con-
sumers only in the context of specialist telemedicine settings to
address select physical and mental health issues. Live video chat
allows users to connect in real time across geographic regions,
can be used to present video, audio, and graphic information,
facilitates relationship development and maintenance among
users, and is increasingly affordable to implement through widely
available technologies. Aparticularly valuable use of video chat
is to facilitate group-based genetic counseling for familial cancer
risk. Family members are commonly located in diverse settings,
and access to in-person genetic counseling is generally limited
to tertiary medical centers in large urban locations. Video chat
has also been used to conduct educational and psychosocial sup-
port groups for a number of cancer patient populations. Results
of preliminary studies suggest that it is feasible to conduct genetic
counseling30 and support groups using video chat, 31 but future
research is warranted to systematically examine the uptake and
efficacy of such approaches.
KEY ISSUES IN eHEALTH INTERVENTION
RESEARCH AND PRACTICE
There are many issues to consider when developing, implement-
ing, and evaluating eHealth interventions, three of which we
briefly highlight here:theoretical and conceptual underpinnings;
methodological issues; and dissemination and implementation.
Although these issues are not unique to eHealth interventions for
cancer prevention and control, they are sufficiently important to
warrant mention.
Theoretical and Conceptual Underpinnings
of eHealth Interventions
Although there has been rapid growth in recent years in the devel-
opment and testing of eHealth interventions, relatively little atten-
tion has been paid to theoretical and conceptual issues related to
such interventions. However, some foundational work has been
set to build the science of this critical area. One model, devel-
oped specifically for conceptualizing, developing, and measur-
ing eHealth programs, is the Internet Intervention Model (IIM).7
The IIM outlines a nonlinear, cyclical process through which
characteristics of the user and the environment influence usage
of an intervention website, which leads to changes in behaviors
and symptoms via mechanisms of change. eHealth interventions
commonly utilize dynamic, adaptive, and interactive feedback
approaches that may trigger complex, reciprocal processes that are
not sufficiently characterized by most health behavior theories.32
It has been suggested that principles of control systems engineer-
ing may provide a framework that appropriately captures such
processes and their outcomes.32 Further conceptual and empiri-
cal research is warranted to develop and test models and theories
of eHealth interventions.
Methodological Issues in eHealth
InterventionResearch
The constantly evolving nature of information and communica-
tion technology devices and functions poses a considerable chal-
lenge to conducting timely and high-quality research on eHealth
interventions. Trials with large sample sizes that utilize a ran-
domized controlled research design to compare a single, static
iteration of an intervention (i.e., the intervention is not changed
during the course of the study) to one or more comparisons or
controls are commonly regarded as an ideal test of interven-
tion efficacy/effectiveness. However, it can take years to obtain
funding, enroll participants, conduct follow-ups, and publish the
results of such studies, during which time an eHealth interven-
tion may become outdated, or even obsolete.33 Anumber of alter-
native non-randomized and randomized research designs and
approaches have been suggested to test preliminary iterations of
eHealth interventions as well as the efficacy, effectiveness, and dis-
semination of interventions that have demonstrated initial feasi-
bility and potential efficacy. Such designs include:pre-post; n-of-1;
interrupted time-series; regression discontinuity; stepped-wedge;
mantling and dismantling; blended (e.g., practical clinical trials
and pragmatic randomized clinical trials); continuous quality
improvement; and comparative effectiveness. Additional infor-
mation regarding the use of such designs, as well as the selection
of potential comparison or control groups in eHealth interven-
tions, is available elsewhere.3,33,34

Dissemination and Implementation
of eHealth Interventions
The full potential clinical and/or public health impact of effica-
cious eHealth cancer prevention and control interventions will
only be realized if they are broadly disseminated and imple-
mented across diverse populations, settings, and geographic
regions. However, studies of eHealth cancer prevention and con-
trol interventions have typically not focused on issues related to
intervention pragmatism or practical feasibility, which provide
important insight on the dissemination and implementation
potential of an intervention. 3 These issues can be addressed using
a number of approaches, including the use of rapid, adaptive, and
pragmatic research designs outlined in the preceding section,
as well as considering intervention cost and cost-effectiveness.
More broadly, an array of principles and approaches from the
field of implementation science can be applied to facilitate the
translation of eHealth cancer prevention research into practice
and policy. 35
CONCLUSIONS
The field of eHealth interventions is still in the early stages, and
it has only been in the last decade that researchers have begun
to examine usage and outcomes in real earnest. The underly-
ing science of eHealth interventions is also just beginning, but a
strong foundation has been set. With the proliferation of eHealth
programs preceded by the near ubiquity of Internet access, there
is little doubt that this area will continue to garner consider-
able attention in the coming years. Prevention programs and
interventions never before possibleand certainly not generally
availablewill become widely accessible and at relatively low
cost. This is all particularly true in the area of cancer prevention
and control, where there is notable interest and impetus to take
advantage of current technologies to create effective programs to
address a wide variety of cancer-related issues and problems.
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 CHAPTER81
Negotiating the Interface of
Psycho-Oncology andEthics
Marguerite S.Lederberg and Mark Lazenby
INTRODUCTION
The topic of this chapter was suggested during the early intro-
duction of bioethics into medical centers. Positing a univer-
sal right to human respect, bioethical discussions gave more
freedom of expression to members of various disciplines and
led to placing well-received mechanisms for managing con-
f licts, such as in-house ethics committees in all larger hospi-
tal centers. But while ethics is a philosophy course in college,
bioethics in medicine is tightly intertwined with psychologi-
cal issues and propels the psycho-oncologist into patients and
families most intimate, yet intractable, concerns. Access to
this interstice where psychology and ethics dwell does not give
the psycho-oncologist authority, but it yields deep insight and
human understanding for the benefit maintaining the patients
sense ofself.
The complexity of boundaries
inpsycho-oncology
Boundaries in Psychotherapy
Modern psychotherapy includes different methods, each of which
has its own defined goal. But all of them share the concept put
forth by early analysts, that therapy must always be driven by the
patients needs, not the analysts thoughts. Their definition was
quite rigid, while ours are much looser. But the definition still
stands and immediately confronts first-year residents, who may
find it hard to establish trust while learning to keep their personal
reactions from blurring the picture. Momentary lapses are inevi-
table, but the disciplined psychiatrist recognizes them and refo-
cuses. Management of external boundaries is easier, but the ones
developed within the frame of treatment are intimately tied to the
relationship and the outcome of the treatment.
Missteps, or boundary events, fall into two categories:(1)vio-
lations, or inappropriate acts, demanding a corrective response
under any condition; (2) deviations from classical therapeutic
activity that are harmless, non-exploitative, and possibly support-
ive of the therapy itself.2 Their harm, if any, comes come from the
patients subjective interpretation. If either psycho-oncologist or
patient has misconstrued the goal, the psycho-oncologist must
promptly open a discussion aimed at clarification and mutual
understanding.
The extreme psychological and physical situations that cancer
patients must tolerate lead to different management of boundaries
than in physical health. They are second nature to nurses, social
workers, and those who work on the wards, but often are new
to young psychiatry residents or fellows whose inpatient experi-
ence has been on psychiatric floors, with minimal applicability to
medicalunits.
The Hospital Experience
The acuity of patients admitted to hospital has increased as more
and more cancer care occurs in outpatient settings, leading to fre-
quent consultation requests.
New patients may endure pain, fear, helplessness, grief, and
uncertainty. They can withdraw and regress, become depressed,
or become angry and negativistic. This is the tenuous platform
from which they are often asked to make major decisions.
Families want to be helpful, but some members are too anxious,
angry, or exhausted by grief and fear, and can only offer various
ratios of support to disruptiveness. They, too, are at risk. They may
be facing major disruptions in family life for three generations. If
the patient loses capacity, a family member will bear the burden
of decision-making, and being frequently opposed by other family
members, he may be left with a sense of guilt and responsibility
that the years will not extinguish. This individual always warrants
special attention.
Staff, trained to maintain a courteous and professional manner,
witness private moments and painful conflict, into which their
duties must intrude. Over time, that unsought-for intimacy may
resonate with their own issues, and may draw them into involve-
ments that are not optimal for any participant. Conscious or not,
these feelings may impact the care given and the management of
different relationships. The psycho-oncologist needs to observe
this and deal with it privately.
This sparse review of what awaits the psycho-oncologist sug-
gests that understanding ones own inner weaknesses in the con-
text of boundaries is critical in order for psycho-oncologists to
function optimally. Self-awareness should always remain a part
of their concerns.
608 SectionXIII cross-cuttingissues
The Psycho-Oncologist and the Inpatient
Hospital settings make a mockery of every known external
boundary, and some inner ones, since the patients body is no
longer totally his own, and he is emotionally shaken as well.
One patient is partly uncovered because dressings keep her from
reaching the blanket. Do not look the other way, but make direct
eye contact while pulling the blanket up and asking her how she
needs it placed. Another patient is preoccupied with his catheter,
in pain, frustrated, mumbling resentfully that the nurse is not
responding. Stop only long enough to introduce yourself and tell
him you are going to the nursing station to alert his nurse. It may
delay the interview, but it will go more smoothly because you have
made an empathic connection and may have already earned his
trust. Athird patients body has become her constant preoccupa-
tion. She needs to talk about it and occasionally display some of
it. She feels very vulnerable and acutely sensitive to your response.
But the fact is that almost all inpatients feel powerless. They need
someone who does not shudder or look away, who is calm, com-
fortable, and available to help them re-experience a strongerself.
One caveat: this review presumes that the psycho-oncologist
will recognize when the patients behavior is related, not to the dis-
ease, but to his or her own psychological needs; this points to a dif-
ferent set of problems on which the psycho-oncologist willfocus.
The Psycho-Oncologist and Medical and NursingStaff
The first lesson that a medical or advanced nursing student learns
on the ward is the importance of accurate chart notes to good
patient care. Once she becomes a psychiatry resident or a psychiat-
ric nurse practitioner, she is taught the unique duty to honor patient
confidentiality. It is day one, and she is already caught between the
duty she owes the referring clinician and her duty to the patient,
especially if she connected well and the patient was talkative.
The problem of dual agency can be managed, but with careful
attention. Any fact that has bearing on patient care must be shared.
It should be discussed with the patient, and the reasons that it may
affect treatment should be explained clearly and patiently. Patients
with cancer usually realize that this is in their interest. Family
problems should be shared with medical and nursing staff mainly
to the extent that they help understanding and management.
Names should not appear in the medical record unless needed as
contacts. We might follow Ned Cassem, who always found a posi-
tive achievement in a patients life, celebrated it, and announced it
to the staff as soon as he reached the station, knowing that it would
improve the connection between patient and caregiver. Famous
patients, however, require protection. Conversations must be lim-
ited to involved clinical staff, chatter must be discouraged, notes
written circumspectly, and the computer password-protected.
Patient privacy aside, it is still important to develop a good rap-
port with the staff on the ward. It always was, but it matters even
more since bioethics has entered the picture. Non-MD staff were
enthusiastic when bioethics first surfaced, providing an outlet to
express both their dedication to patients and their frustration at
not always being able to provide what they viewed as optimal care.
This contrasted with some physicians, who felt that the demands
and ambiguities of their work were underestimated and misun-
derstood by outsiders. Institutions that responded constructively
and gave voice to everyone saw an improvement in morale and
better cooperation among all disciplines.
But the psycho-oncologist called to a given case must still con-
nect with the caregivers. Their statements and behaviors assume
enormous importance for patients and families, who scrutinize
them and have intense responses that may affect the relation-
ship. Sometimes, one issue involves several caregivers, and the
psycho-oncologist must identify the disruptions and help the
team reach consensus, focusing on events, not individuals.
The Psycho-Oncologist and theFamily
The boundaries faced by psycho-oncologists in dealing with
families are multidimensional and sometimes conflicting. How
many individuals are involved? How do they relate to each other,
to the patient, to the staff? What are the patients feelings of sep-
arateness or closeness to the family? How does the patient make
decisionswith one or two or three individuals in the family, or
with none? What does the patient want whom to know? Even har-
monious families may run into problems, so the psycho-oncologist
must consciously always work to bring members closer, not acci-
dentally drive them asunder.
This requires spending time with the familyin the room or
the hallway, together or individually. The psycho-oncologist
should deal with any family member who interferes with patient
care or disrupts the ward milieu, working closely with staff and
security in extreme cases. He determines whether a disturbed
family member needs care, and offers a referral or admission.
When everyone is on the same team, the patient can communi-
cate his wishes, and things go well. But families are not always of
one mind. Among families from some (mostly Western) cultures,
a patients wishes are considered primary and must be honored.
Families from other cultures, however, expect a patient to defer
his wishes to the greater good of the family. Psycho-oncologists
must work within the familys cultural framework, for by doing so
they are providing cultural safety for patients and families.3 When
wide cultural differences exist with the treatment team and the
psycho-oncologist, he or she can generate self-reflection, aware-
ness of power imbalances, and institutional discrimination, if any.
The resulting discussions enable provision of quality cancer care
congruent with patients and families cultural values and names.4
When a patient loses decisional capacity, constant efforts must
be made to improve it, but decisions cannot always wait, and the
need for a designated healthcare proxy is paramount. Lacking
one, a good surrogate may arise from within the family. But when
none appears, the psycho-oncologist must elicit the optimal solu-
tion among the available family members and other sources of
support before turning to the last, legal resource.
The Outpatient Setting
Patients well enough to be coming for appointments may not
require special attention. But many are still quite ill, may come
with a walker, wheelchair, or assistant, putting forth an effort that
the psycho-oncologist must acknowledge. Attention to comfort is
appropriate, and recognition of fatigue should lead to a shorter
session, unless the patient demurs. Rarely, a medical judgment
needs to be made on the spot and the patient referred for imme-
diate evaluation. Cancellations are accepted unless abused, and
phone consults accepted, if justified.
The usual relationship ground rules apply, but unlike usual
psychosocial treatment, the psycho-oncologist and patient share
an intense interest in the cancer experience and pursue it actively

together. The psycho-oncologist remains in contact with the
oncologist, and is clear when he or she feels the patient should see
a physician.
Depending on the course of cancer, the patient may see a
psycho-oncologist more often than other physicians and may
describe symptoms, ignoring their significance. Responding to the
alert is part of the psycho-oncologists duty. Multiply addressed
e-mails that go to all staff playing a role in the patients care have
greatly eased coordination and have improved the care of patients,
while improving the teamwork in large institutions.
THE CONFLUENCE OF PSYCHO-ONCOLOGY
AND ETHICS IN CONSULTATION-LIAISON
PSYCHO-ONCOLOGY
Figure 81.1 illustrates the fluidity of a clinical situation that
involves both psycho-oncology and ethical issues. The stresses
affecting patients and families often generate dysfunctional
behaviors, but the underlying issue may be an ethical conflict that
is wrenching some family members. The range of responses varies
widely, with staff responses milder but not absent.5 The illustrative
case that follows was brought to one of us by a colleague several
yearsago.
Mrs. E., a 50-year-old woman with end-stage lung cancer, was
admitted, in a delirious state, for what would be her last admission.
Her daughter, age 13, son, age 17, and unmarried sister, a lawyer
very close to her, were with her. Her husband, previously known to
participate, was absent. Staff learned that he had committed sui-
cide. The sister demanded of everyone, including staff but also Mrs.
E.s children, not to tell her confused sister anything about it, adding
that, as next-of-kin, she was the childrens guardian.
Mrs. E.s delirium abated, and the psychiatry fellow, who had been
treating her, learned that Mrs. E.was well aware of her husbands
suicide potential. She demanded to know the truth. Her sister did
not respond. The staff, in turmoil, was ready to call an emergency
ethics consult when the psychiatry fellow brought in the senior
psychiatry attending, who called a family meeting. The attending
opened the meeting by saying that, in such difficult times, devoted
families can create unintended pain and confusion out of love, but
it was now time to clear it up and for everyone to speak their mind.
The mother did not express blame, but reassured her children, who
wept with sadness and relief. She thanked her sister for her devo-
tion, and focused on what she wanted for her children in the future.
As long as she was alive, the children were to come and go as they
pleased and speak freely about all their concerns, and she and her
sister would continue to meet as before, just to be together as well as
to have further discussions about the childrens upbringing.
Mrs. E.died within a week. Warm, intense moments made this
dying womans last days worth living; they were a balm for her sur-
vivors in their grief and will provide comfort for them for a lifetime.
It was morally imperative to make the dying experience better for
all involved.
In this situation, the psycho-oncologists, both the fellow and
the senior attending, moved back and forth with the flux of the
case, treating the patients delirium and opening the space for the
patient and family to address the ethical issue at hand. It also gave
Chapter81 psycho-oncology andethics 609
Severe stresses
Psychopathology
Ethical dilemmas or dysfunctional
responses
Figure81.1 Constant state of biodirectional flux between components of a
complex clinical case.Lederberg MS. Making a situational diagnosis:psychiatrists
at the interface of psychiatry and ethics in the consultation-liaison setting.
Psychosomatics. 1997 JulAug;38(4):327338.
the sister an opening for further help as treatment was suggested
for her and for the children to work through the grieving process
while remaining connected. Indeed, most of the ethical issues that
arise in psycho-oncology are embedded in everyday clinical situa-
tions, magnified by high-stress settings and the painful realities to
be confronted. In these situations in which psycho-oncology and
ethics converge, it may be helpful to make a situational diagnosis
that identifies the many and varied issues.
MAKING ASITUATIONAL DIAGNOSIS
The situational diagnosis 6,7 is used for a more systemic look
and a deeper analysis than many cases require (Table 81.1). The
five sections each include major components to be explored,
and the responses that could be activated. They are not exhaus-
tive, and should be further pursued wherever they may lead.
Psycho-oncologists are more accustomed to the patient/family
problems in Section I, but staff and institutional ones may be in
play as well in Section II. Section III, on the quality of the relation-
ship between the staff and the patient/family group, also need to
be reviewed consciously. Ferreting out the psychological dimen-
sions of patient, family, and staff dynamics leads to the heart of
the clinical situationits unique inner coherence that, before a
situational diagnosis, may seem incoherent.
Section IV, legal issues, will benefit from a little history. The
decades during which bioethics made its case to the world were
full of controversies, some of which are settled. There is far more
to do, but there are now many laws and regulations that address
previously controversial issues, particularly around respect for
persons, end-of-life issues, and a number of medical situations.
They are numerous because they vary by state and also include
institutional decisions. They provide the geographically individu-
alized content of section IV, which needs to be reviewed and inte-
grated into the case, if there is any evidence that they have a role
toplay.
If not, one turns to the ethical analysis in SectionV.
Ethical Analysis
It has been said that with the publication of Paul Ramseys The
Patient as Person: Explorations in Medical Ethics in 1970, the
contemporary discipline of medical ethics emerged. 8 Ramseys
610 SectionXIII cross-cuttingissues
Table81.1 The Situational Diagnosis
Components of the Situational Diagnosis
I. Patient/family issues
Is there a psychological problem or treatable psychiatric disorder
affecting the patient or any relevant family member?
Psychologically, what issues drive the situation?
Whom do they involve?
II. Staff issues
Is there disagreement about medical, nursing, social work management?
Is some other interstaff conflict being played out?
III. Joint issues
What is the nature of the relationship between the staff and the patient and
family?
What is the understanding and explicit labeling of the issues by different
participants?
IV. Legal issues
Are there laws or regulations (federal, state or local) that impinge upon the case?
Are there institutional constraints that impinge upon the case?
Could any of these create a potential conflict? If so, what is the nature of that
conflict?
V. Ethical issues
Is there an ethical dilemma? Atrue conflict of values that cannot be reduced to
any other problem or misunderstanding?
Is it driving the psychological symptoms?
How can it be most usefully analyzed?
Adapted from Lederberg MS. Making a situational diagnosis:psychiatrists at the interface of psychiatry and ethics in the consultation-liaison setting. Psychosomatics. 1997
JulAug;38(4):327338.
central questionWhat threatens the human person as person?
is also a central question when conducting an ethical analysis. In
a situational diagnosis, one might ponder whether ethical issues
embedded in the patients story generate such strong dysfunc-
tional psychological reactions that the patients very personhood
is threatened. If one were to conduct an ethical analysis according
to Ramseys approach, one would focus on fidelity to the patient;
one must at all times respect the patient. The psychiatry fellow and
attending involved in Mrs. E.s care showed her respect by giving
her the forum in which her personhood could be fully restored.
In 1979, with the publication of Principles of Biomedical Ethics,
Thomas Beauchamp and James Childress expanded Ramseys
Related Interventions
Establish patients decisional capacity; if absent, treat and optimizeit.
Refer acute psychiatric disorders in family members; if not, minimize or
neutralize disruptions from family members.
Answer questions and educate.
Promote communication and mutual support.
Address family conflicts as required.
Involve relevant professional caregivers.
Discuss conflicts, focusing on issues, not individuals.
Circumvent intrastaff/systemic issues unless discussion is required for patient
care
Explain patient/family issues to staff in ways that promote accurate empathy.
Address over-involvement and rejection, dealing with observable events
rather than individuals.
Recognize and minimize cultural/religious incongruences. Call in bridging
cultural/religious figures.
Allow everyone to ventilate.
Ensure that participants know and understand any of these constraints.
Discuss their impact on the particular case.
Discuss the existing conflicts and resolve the ones that have a clear solution.
Identify the remaining issues.
Identify the hierarchy of values, if needed.
Identify the protagonists, major and minor.
If psychological issues are primary, explain the situation to all concerned.
See if you can, through discussion with the involved parties, loosen the ethical
stalemate.
notion of respect for persons to formulate the principle of auton-
omy.9 According to Beauchamp and Childress, the patient is a free
moral agent. As such, the patient alone can decide what can be done.
In addition to autonomy, Beauchamp and Childress identified three
other principles: non-maleficence, beneficence, and justice. These
four principles of bioethics have been widely adopted as guides to
ethical analysis in most hospitals. When addressing public issues of,
say, duties to patients and the just distribution of resources, bioethi-
cal principles can be helpful. They are less helpful, however, in acute
clinical situations in which psycho-oncology and ethics intermingle
so as, at first sight, to be indistinguishable. The principle of autonomy,
for example, does not itself attune well to the complexities of acute

situations. As often is the case in psychiatric situations, psychopa-
thology, dysfunctional responses, or severe distress may constrain a
patients autonomous free moral agency. When a patient is not a free
moral agent (not autonomous, as it were), the psycho-oncologist is
in a difficult position. Suppose Mrs. E.s delirium never abated. She
would not have been a free moral agent, but she would have been no
less a person. Even in a delirious state, she, as fully human, would
have been due the intimate knowledge of her husbands suicide. Her
children, though not of legal majority and thus, to some, not capable
of taking matters into their own hands, as fully human, were due
access to their mother to tell her of their fathers fate. By focusing
on principles, bioethics often lacks interest in patients silenced by
circumstance and children intimidated by those who, with perhaps
the best of intentions, have been placed as their guardian.
When analyzing the ethical issues in a situational diagnosis, it
helps to return to Ramseys respect for persons, which Ramsey
centered on the notion of covenant.10 In psycho-oncology, patient,
family, and psycho-oncologist have entered into agreement;
their wills, as it were, have become one. They are joint adventur-
ers toward the common cause of psychological wholeness. When
undertaking an ethical analysis as part of a situational diagnosis,
the psycho-oncologist should analyze the situation as one would
with joint adventurers: without judgment, with understanding,
with respect for culture and religion, and with the common cause
foremost in mind. In an ethical analysis, the psycho-oncologist
must closely examine the situation, ask questions, and carry out
the tasks that will, in the end, be faithful to the psycho-oncologists
and patients agreementpsychological wholeness. Mrs. E., though
in the last moments of life, was restored to psychological health,
and her children and sister were set on a healthier path, through
the review of the situational diagnosis that allowed moral and
psychological issues to be identified and coexist in a constructive
setting. It also helped relieve the ethical angst felt by the staff (for
example, the young psychiatry fellow and many of the ward nurses,
in the case of Mrs. E.). Box 81.1 describes different therapeutic
Box 81.1 Therapeutic Approaches
Dealing with Patient andFamily
The family needs a nonjudgmental therapeutic approach, estab-
lishing what they understand and building uponit.
Involve religious or cultural bridging figures as needed. Remain
supportive and involved.
Dealing WithStaff
Use this as a learning opportunity in staff meetings.
Encourage an open, lively discussion of the ethical issues.
Normalize the variations, if appropriate.
Work to enable the staff to deal more effectively with the patient
and family, and perhaps with eachother.
Chapter81 psycho-oncology andethics 611
approaches that the psycho-oncologist can take that distinguish
transactions with staff from those with patients and families.
CONCLUSION
Psycho-oncology has always required an ability to move com-
fortably into different settings, relate to the different disciplines
represented on the cancer care team, and work with patients
suffering from acute disease, intense fears, and foreseen losses.
Psycho-oncologists, as a vital part of the cancer care team, often
work in the interstices between psycho-oncology and ethicsthe
small spaces in clinical situations into which the largest of lifes
problems and questions intertwine. Psycho-oncology is a guard-
ian of patients humanity, when complex situations threaten it.
Although bioethics often spans the grand chasms between medi-
cal advances gained from the ever-expanding capacity of biotech-
nology and the ethical issues therein, psycho-oncologists dwell
in the small spaces of patients and families everyday clinical
realitiesrealities often burdened under stress and entangled with
psychopathology, dysfunctional responses, and ethical dilemmas.
Psycho-oncologists make sense of stressful situations in which
one cannot always tell where psychological problems and ethical
dilemmas begin and end. The fluidity of the boundaries typical
of this work and, sometimes, the psycho-oncologists dual agency
make additional demands. This chapter has attempted to clarify
boundary issues and to provide the tool of performing a situational
diagnosis to bring clarity to opaque situations and, once clear, to
disentangle the issues. The systematic framework of a situational
diagnosis notwithstanding, the consultation of a self-monitoring
psycho-oncologist remains essential to cancercare.
REFERENCES
1. Waldinger RJ. Boundary crossings and boundary violations:thoughts
on navigating a slippery slope. Harvard Rev Psychiat. 1994
NovDec;2(4):225227.
2. Gutheil TG, Gabbard GO. The concept of boundaries in clinical prac-
tice:theoretical and risk-management dimensions. Am J Psychiat.
1993 Feb;150(2):188196.
3. Ramsden I. Cultural safety. New Zeal Nurs J. 1990 Dec1991
Jan;83(11):1819.
4. Williams R. Cultural safety:what does it mean for our work practice?
Aust NZ J Publ Health. 1999 Apr;23(2):213214.
5. Lederberg MS. Staff support groups for high-stress medical environ-
ments. Int J Group Psychother. 1998 Apr;48(2):275304.
6. Lederberg MS. Making a situational diagnosis:psychiatrists at the
interface of psychiatry and ethics in the consultation-liaison setting.
Psychosomatics. 1997 JulAug;38(4):327338.
7. Lederberg MS. Disentangling ethical and psychological issues:a
guide for oncologists. Acta Oncol. 1999;38(6):771779.
8. Ramsey P, Jonsen AR, May WF, Yale University, Institution for Social
and Policy Studies. The Patient as Person:Explorations in Medical
Ethics, 2nd ed. New Haven, CT:Yale University Press;2002.
9. Beauchamp TL, Childress JF. Principles of Biomedical Ethics.
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10. Ramsey P. The Patient as Person:Explorations in Medical Ethics. New
Haven, CT:Yale University Press;1970.
 CHAPTER82
Disparities in the
Impact ofCancer
Rory C.Weier, Sarah A.Reisinger,and
Electra D.Paskett
OVERVIEW
Globally, 12.7million new cancer cases were diagnosed in 2008,
of which 44% and 56% were in economically developed and devel-
oping countries, respectively.1 Also in 2008, cancer accounted for
7.6million deaths worldwide, of which 37% and 63% occurred in
economically developed and developing countries, respectively.1
In the United States, it is estimated that over 1,660,000 new cancer
cases were diagnosed and 580,350 Americans died of cancer in
2013.2 Over 21million new cancer cases and 13million cancer
deaths are predicted globally in the year 2030 alone as a result of
population growth and aging. However, if low- and middle-income
countries continue to adopt smoking, poor diet, physical inactiv-
ity, and reproductive patterns characteristic of high-income coun-
tries like the United States, these numbers underestimate what the
global cancer burden will be in the distant future.2
Addressing the increasing trend in cancer incidence and mortal-
ity is complicated by the fact that the burden of cancer is not distrib-
uted equally across the world or within a nation, such as the United
States. According to the National Cancer Institute (NCI), cancer
health disparities are adverse differences in cancer incidence (new
cases), cancer prevalence (all existing cases), cancer death (mortal-
ity), cancer survivorship, and burden of cancer or related health
conditions that exist among specific population groups in the
United States.3 Disparities often exist on the basis of age, gender,
race/ethnicity, language, socioeconomic status, and geographic
location. For example, compared to all other racial and ethnic
groups in the United States, African Americans are more likely to
both develop and die from cancer.2 The burden of cancer incidence
and mortality among African Americans necessitates interventions
across the entire cancer control continuum (CCC), which spans
across etiology and prevention, early detection, treatment and
end-of-life care, and survivorship. In contrast to disparities across
the CCC, the psychosocial impact of cancer and related disparities
are not as well understood. Using a psychosocial lens, this chapter
summarizes cancer disparities and the psychosocial impact of can-
cer across the CCC and provides suggestions for future research by
highlighting the utility of a population health disparity framework
and the Patient Protection and Affordable Care Act of 2010(ACA).
DISPARITIES ACROSS THE
CANCERCONTROL CONTINUUM
Etiology and Prevention
In the United States, high body mass index, inadequate physi-
cal activity, poor nutrition, tobacco use, and exposure to viruses
are preventable factors known to vary by sociodemographic fac-
tors (e.g. race/ethnicity, income, insurance status, and place)
and contribute to the overall cancer burden and cancer-related
health disparities among subpopulations. Select disparities are
presentedbelow.
Overweight and Obesity, Physical Inactivity,
and Poor Nutrition
Between 25% and 33% of all of the new cancer cases diagnosed
in the United States in 2013 are the result of overweight and
obesity and physical inactivity and poor nutrition.2 There is suf-
ficient evidence linking obesity with an increased risk of develop-
ing cancer of the esophagus, pancreas, colon and rectum, breast
(post-menopausal), endometrium, kidney, thyroid, and gallblad-
der.4 However, the burden of obesity is not distributed equally
across the country. An analysis of National Health and Nutrition
Examination Survey (NHANES) data collected between 1999 and
2010 found the prevalence of obesity among men in the United
States did not differ substantially by race/ethnicity.5 However,
among women, the overall prevalence of obesity was 51% among
non-Hispanic blacks compared to 41% among Mexican-Americans
and 21% among non-Hispanic whites.5
Tobacco
In the United States, tobacco is the leading cause of disease that
is preventable, underlying nearly 90% of lung cancer deaths.
Annually, tobacco use is attributed to 443,000 premature deaths,
of which over 10% occur among nonsmokers exposed to second-
hand smoke, and roughly $200 billion in productivity loss and
healthcare expenditure.6 An analysis of National Survey of Drug
Use and Health (NSDUH) data collected in 20092010 found that
adults 18 or older without a high school diploma had the high-
est prevalence of smoking (34.6%). 5 Alarmingly, in 20092010,

nearly 50% of 12th-gradeaged high school dropouts were smok-
ers, compared with just over 20% of their peers who were still in
school.5
Virus Exposure
The negative health effects of infectious agents like human pap-
illomavirus (HPV), hepatitis B virus (HBV), hepatitis C virus
(HCV), human immunodeficiency virus (HIV), and Helicobacter
pylori (H. pylori) can be prevented through behavioral change,
vaccination, or use of medications like anitbiotics.2 Persistent
infection with select HPVs causes cervical cancer. Gardasil and
Cervarix are vaccines approved for the prevention of the most
common types of cervical cancer causing HPV infection among
young women 926years of age.2 An analysis of 2012 National
Immunization Survey-Teen (NIS-Teen) data found that 66.7%
of girls age 1317 reported HPV three-dose vaccine completion,
which is below the Healthy People 2020 target of 80%.7 Differences
in HPV vaccination coverage and series completion were observed
among girls. Coverage for three or more doses ranged from 12.1%
in Mississippi to 57.7% in Rhode Island, coverage for one or more
and two or more doses was higher for those living below the pov-
erty level, but series completion was greater for those at or above
the poverty level, and coverage for one or more and two or more
doses was higher among Hispanics than non-Hispanic whites and
blacks, but series completion was highest among non-Hispanic
whites.7
Early Detection
When it is not possible to prevent or modify cancer risk fac-
tors, regular screening can be used to detect cancer at an early
stage. Since the early detection of cancer allows for more success-
ful treatment and control, the use of cancer screening modali-
ties has resulted in a decrease in cancer mortality. As explained
in Chapter 9, the detection of early stage breast cancer using
Table82.1 Select Screening Disparities for Cancers of the Breast, Cervix, and Colon andRectum
Healthy People 2020 Screening Target8 Select Screening Disparities9
Cancer Site Breast 81.1% of women aged 5074 receive
a breast cancer screening based on
the US Preventive Services Task Force
(USPSTF) guidelines released in 2008.
Cervix 93.0% of women aged 2165years of
age receive a cervical screening based
on the 2008 USPSTF guidelines.
Colon and 70.5% of adults aged 5075years of age
Rectum receive a CRC screening based on the
2008 USPSTF guidelines.
Chapter82 disparities in the impact ofcancer 613
mammography saves lives and increases treatment options. 2
Screening is particularly important for cancers of the cervix and
colon and rectum that have the potential to be completely pre-
vented through early detection and the removal of precancerous
growths.2 In the United States, the Papanicolau (Pap) test is the
most widely adopted cervical cancer screening method, and tests
for HPV are often used in combination with the Pap test as an
additional method of screening or follow-up to an abnormal Pap
test result.2 Screening modalities for the early detection of colon
and rectum cancer (CRC) include fecal occult blood test, fecal
immunochemical test, stool DNA test, flexible sigmoidoscopy, CT
colonography, and colonoscopy.8 Select screening disparities for
cancers of the breast, cervix, and colon and rectum are summa-
rized in Table82.1.
Treatment and End-of-LifeCare
Once detected, cancer can be treated by surgery, chemother-
apy, radiation, or other means. An analysis of linked National
Longitudinal Mortality Study and Surveillance, Epidemiology,
and End Results (SEER) data from 13,234 female breast, colon
and rectum, prostate, lung and bronchus, cervix, ovarian, mela-
noma of the skin, and urinary bladder cancer cases examined
differences in receipt of cancer-directed surgery and radiation
therapy by tumor stage, race/ethnicity, and SES.9 After control-
ling for individual-level education, health insurance, income,
poverty status, and other patient and tumor characteristics, black
patients had 50% lower odds of receiving cancer-directed surgery
than whites (95% CI:0.40.6), whereas adjusted models found no
significant differences in the receipt of radiation therapy among
ethnic groups.9
Palliative care and hospice care are used to bring comfort to
individuals diagnosed with cancer and other life-threatening con-
ditions. Asystematic review of literature on socioeconomic depri-
vation and end-of-life care access in developed nations found that
Per an analysis of 2010 National Health Information Survey (NHIS), 72.4% of women
aged 5074 received a mammogram within the past two years. Ahigher percentage of
white (72.8%) and black women (73.2%) reported being current with mammography
than Asian women (64.1%), and screening was positively associated with education.
Mammography use was low among immigrants in the US for less than 10years
(46.6%) and those without a usual source of healthcare (36.2%) or health insurance
(38.2%).
From 2000 to 2010, there was a small but significant downward trend in the number
of women reporting having had a Pap test within the past 3years. An analysis of 2010
NHIS data found that 83.0% of women without a hysterectomy reported having a
Pap test within the past 3years. Screening rates were lower among women who were
Asian (75.4%), lacked access to healthcare (64.9%), or were uninsured (63.8%).
From 2000 to 2010, there was a significant upward trend in the number of adults
reporting being current with CRC screening. However, an analysis of 2010 NHIS data
found that only 58.6% of adults reported being current with CRC screening. Roughly
the same proportion of men and women reported being current (58.5% and 58.8%,
respectively). However, adults who were white, non-Hispanic, and 6575years of age
were more likely to be up to date than those who were black or Asian, Hispanic, or
5064years of age, and less than 25% of adults who had lived in the US for less than
10years or lacked a usual source of healthcare or insurance were current.
614 SectionXIII cross-cuttingissues
palliative and hospice care is not equally distributed across dif-
ferent dimensions of access:availability, geography, acceptability,
and affordability. The supply of palliative and hospice care services
tends to be insufficient to meet the needs of growing aging popula-
tions and to be more limited in low socioeconomic areas, which
may contribute to reliance on sources of acute care and a lower
rate of home death among low income populations.10 Location,
distance, and transportation-associated costs were pronounced
determinants of access to care. Literature from the United States
noted that palliative care was viewed with suspicion and as infe-
rior to curative treatment by low socioeconomic populations,
and across developed nations a need for improved health literacy
surrounding end-of-life care was noted. The financial burden of
end-of-life care was not limited to countries without universal
healthcare, and low socioeconomic populations spent more on
end-of-life care than groups of higher socioeconomic position.10
Survivorship
An analysis of linked National Longitudinal Mortality Study and
SEER data of over 13,000 cases of the eight most common types
of cancer explored differences in survival rates by tumor stage,
ethnicity, and SES.9 Survival rates were lower for individuals with
higher grade tumors, and there were differences in percentage of
three-year observed survival between cancer sites and within can-
cer sites by tumor stage. Overall, three-year survival rates for cases
with local stage tumor were 90% for Hispanics, 86% for American
Indians/Alaska Natives, 85% for whites and Asian and Pacific
Islanders, and 82% for blacks. Controlling for age, sex, tumor
stage, socioeconomic factors, and treatment, the hazard ratio
comparing the cancer-specific mortality of blacks to whites was
not statistically significant (HR:1.0; 95% CI:0.91.1).9 Differences
in survival by insurance status persisted after accounting for
sociodemographic factors and first course therapy. Cases with
Medicaid or no insurance had a 3% higher cancer-specific mor-
tality rate than cases with private, employer, or Medicare health
insurance (HR 1.03, 95% CI:1.11.4)9
THE PSYCHOSOCIAL IMPACT OF
CANCER ACROSS THE CANCER
CONTROLCONTINUUM
Unlike cancer incidence and mortality, the psychosocial impact
of cancer and related disparities is not as well quantified. Studies
of psychological comorbidities among individuals affected by
cancer, including patients, their family members, and their care-
givers, often fail to distinguish by disease site, disease phase (e.g.,
newly diagnosed, under treatment, survivorship, stable metastatic
disease, or end-stage) and sociodemographic characteristics.
Consequently, estimates of psychosocial impacts are imprecise.
Between 15% and 50% of cancer patients experience depressive
symptoms, and 5%20% meet major depressive disorder diagnos-
tic criteria.11
A summary of meta-analyses and systematic reviews on the
psychosocial impact of cancer across the CCC is provided below.
There is a noticeable gap in terms of disparity research. By pool-
ing results, meta-analyses provide a big picture overview, which
may obscure cancer-related psychosocial disparities within spe-
cific subgroups. However, this gap seems to be the result of limited
disparity research in this area. For each CCC sector, potential dis-
parities in the psychosocial impact of cancer and suggestions for
future research are described.
Etiology and Prevention
Modifiable cancer risk factors make a significant contribution to
the burden of cancer, but other factors are hereditary. Predictive
genetic testing can be used to determine whether an asymptom-
atic person is a carrier of mutations such as BRCA1 or BRCA2,
rare genetic mutations that lead to an increased risk of developing
breast and ovarian cancer among women and an increased risk of
developing breast, prostate, and pancreatic cancer among men.12
Although not all carriers of these genetic mutations will develop
these cancers, studies indicate that the prophylactic removal of fal-
lopian tubes, ovaries, and/or breasts has been shown to decrease
the risk of breast and ovarian cancers among women with BRCA1
and BRCA2 mutations.2 However, the uptake of predictive genetic
testing is not universal. Among a national sample of nearly 1500
insured women newly diagnosed with early onset (age 40years)
breast cancer, who are at high risk of carrying deleterious muta-
tions in the BRCA1 or BRCA2 genes, Levy etal. (2011) found a low
overall genetic assessment rate (30%) and differences by race/eth-
nicity. Compared to non-Jewish women, adjusted models found
that those of Jewish ethnicity were significantly more likely to be
tested (hazard ratio [HR] = 2.83, 95% CI: 1.525.28) and those
who were black (HR = 0.34, 95% CI: 0.180.64) and Hispanic
(HR=0.52, 95% CI:0.330.81) were significantly less likely to be
tested.13 It is unclear whether these results are due to differences
in the frequency of these mutations among specific groups like
Ashkenazi Jews or are indicative of a testing disparity.
The psychosocial impact of predictive genetic testing overall
is not well understood, nor are disparities in the psychosocial
impact of predictive genetic testing among potential BRCA1 or
BRCA2 carriers. Hamilton etal. (2009) conducted a meta-analysis
of 20 studies on the relationship between BRCA1 and BRCA2
predictive genetic testing, anxiety, and cancer-specific distress
in developed nations. Following testing, the degree of change in
anxiety differed significantly between carriers, non-carriers, and
those with inconclusive results after 04 weeks (mixed effects
Q(2)=22.41, p = .001) but not after 524 weeks, or, between car-
riers and non-carriers, 2552 weeks.12 The degree of change in
cancer-specific distress differed significantly between carriers,
non-carriers, and those with inconclusive results after 04 weeks
(mixed effects Q(2)=25.37, p = .001); 524 weeks (mixed effects
Q(2)=15.71, p = .001); and 2552 weeks (mixed effects Q(2)=7.40,
p = .03).12 Differences in the psychosocial impact of predictive
genetic testing on the basis of race/ethnicity, insurance status,
gender, and other factors were not reported, necessitating future
research.
Early Detection
As with predictive genetic testing, improved understanding of the
emotional impact of cancer screening over time is needed since
screening may lead to a diagnosis of cancer or false positive, false
negative, or inconclusive results. Since there are differences in
the receipt of cancer screening on the basis of age, race/ethnic-
ity, insurance status, educational attainment, and region, there is
also need for more research on the psychosocial impact of cancer
screening among populations that are not within guidelines.14

For example, among a sample of 345 women in Appalachian
Kentucky, 34% reported rarely or never receiving a Pap test.15 The
belief that cancer screening causes worry was found to signifi-
cantly increase the odds of rarely or never undergoing a Pap test
(OR:2.80, 95%:1.325.91) and the worry these women anticipate patients were not initially screened for elevated distress. There was
screening to cause may be due to limited accessibility of follow-up
care available in Appalachia.
To assess emotional changes within four weeks and after four
weeks of screening for disease, Collins etal. (2011) conducted a
meta-analysis of 170,045 adults from 12 studies, of which six
included cancer screening.16 The impact of screening on anxiety
and depression within four weeks and after four weeks was found
to be insignificant overall and when comparing those with posi-
tive and negative test results.16 The impact of screening on quality
of life and general distress overall and by test outcome within four
weeks after receipt of test results could not be assessed using the
data available. After four weeks, however, the impact of screen-
ing on mental quality of life, self-assessed health subscales of
quality of life, and general distress was insignificant overall and
when comparing those with positive and negative test results.16
Disparities in the emotional impact of cancer screening across
these time periods by patient sociodemographics fell outside the
scope of this paper, so it is unclear how the short- and long-term
emotional impacts of cancer vary within screened subpopulations.
Treatment and End-of-LifeCare
When considering disparate psychosocial impacts of cancer treat-
ment and end-of-life care, it is important to acknowledge underly-
ing disparities in the receipt of cancer treatment, palliative and
hospice care, and emotional disorder treatment.9,10,17 Among
a national sample of over 15,000 adults for whom cancer status
was not assessed, 8.25% reported having depressive disorder the
previous year, and depression severity ratings did not differ sig-
nificantly by race/ethnicity.17 Of those reporting depressive dis-
order in the past year, 40.2% of non-Latino whites did not access
mental health treatment in the previous year compared to 63.7%
of Latinos, 68.7% of Asians, and 58.8% of African Americans (p <
0.001). Compared to non-Latino whites, the likelihood of having
access and receiving quality depression care was significantly dif-
ferent for all minority groups excluding Latinos, who experienced
marginally significant differences.17
Unfortunately, the underlying disparities in the prevalence of
depressive disorders and access to and receipt of quality mental
health treatment by race/ethnicity fall outside the scope of the
following systematic review and meta-analysis, leaving room for
future research. Linden and Girgis (2012) conducted a systematic
review of 14 published meta-analyses to determine whether the
varying conclusions drawn by previous reviews of the literature
on the effectiveness of depression and anxiety treatment among
cancer patients were due to poor control of moderators like study
quality, treatment type, dosage, therapist qualities, outcomes at
follow-up, and screening for elevated distress.18 The direction of
all treatment effects was positive, but the magnitude was extremely
variable. The quality of the previous studies did not impact results
related to the treatment effects for depression, but those of poor
quality tended to underestimate treatment effects for anxiety.
Floor effects, caused by the recruitment of patients into treatment
studies without using high levels of distress as the selection crite-
rion, were found to suppress the effect of treatment on depression
Chapter82 disparities in the impact ofcancer 615
and anxiety. However, analyses of original study data indicated
that the observed treatment effect sizes among studies in which
patients were initially screened for elevated distress were approxi-
mately three times greater than those among studies in which
insufficient evidence to explore differences in the effect of treat-
ment by cancer type or stage. Since sociodemographic disparities
in the effectiveness of depression and anxiety treatment among
cancer patients were not examined, disparities in the psychosocial
impact of cancer treatment cannot be summarized.
Mitchell et al. (2011) conducted a meta-analysis to estimate
the pooled prevalence of depression, anxiety, and adjustments
disorders among patients in oncological, haematological, and
palliative-care settings.19 Among oncological and hematologi-
cal patients, the pooled prevalence for depression (as defined
by the Diagnostic and Statistical Manual of Mental Disorders
(DSM) or International Classification of Diseases (ICD) crite-
ria), DSM-defined major depression and DSM-defined minor
depression, adjustment disorder, anxiety, and dysthymia were
16.3% (95% CI:13.419.5), 14.9% (95% CI:12.217.7), 19.2% (95%
CI:9.131.9), 19.4% (95% CI:14.524.8), 10.3% (95% CI:5.1-17.0),
and 2.7% (1.74.0), respectively.19 Of all 10,071 participants, 20.7%
(95% CI: 12.929.8) were diagnosed with a form of depression,
31.6% (95% CI: 25.038.7) were diagnosed with depression or
adjustment disorder, and 38.2% (95% CI:28.448.6) were diag-
nosed with a mood disorder. Among palliative care patients, the
pooled prevalence of depression, major depression, minor depres-
sion, adjustment disorder, and anxiety disorders was 16.5% (95%
CI:13.120.3), 14.3% (95% CI:11.117.9), 9.6% (95% CI:3.618.1),
15.4% (95% CI: 10.121.6) and 9.8% (95% CI: 6.813.2), respec-
tively.19 Of all 4007 participants, 24.6% (17.532.4) were diagnosed
with a form of depression, 24.7% (95% CI:20.828.8) were diag-
nosed with depression or adjustment disorder, and 29.0% (95%
CI: 10.152.9) were diagnosed with a mood disorder. Although
this analysis allowed for comparisons across medical settings, the
psychosocial disparities at this sector of the CCC cannot be sum-
marized because the prevalence of mood disorders by patient-level
characteristics was not examined.
Survivorship
Exploration of disparate psychosocial impacts of cancer survivor-
ship should take into account underlying disparities in the preva-
lence of emotional disorders like depression and in survival by
cancer characteristics like site or stage. For example, compared
to whites of the same gender, black women have lower five-year
survival rates for breast cancer and CRC and black men have
lower five-year survival rates for CRC and cancers of the prostate,
lung, and bronchus. 20 A meta-analysis conducted by Pinquart
and Duberstein (2010), using data from 76 prospective studies,
found that diagnosis of depression and higher levels of depressive
symptoms predict elevated mortality among individuals affected
by cancer, regardless of whether depression status was assessed
before or after a cancer diagnosis. 21 Depression was associated
with shorter survival in patients with leukemia/lymphoma, breast
cancer, lung cancer, brain cancer, other homogeneous cancer sites,
and mixed cancer sites. The authors highlighted the need for rou-
tine screening for depression among cancer patients and survivors
and additional research to determine whether the treatment of
depression improves both quality of life and survival of depressed
616 SectionXIII cross-cuttingissues
individuals affected by cancer. Given the racial differences in the
prevalence of depression and survival of cancer by site, further
research is needed to discern whether the effect of depression on
quality of life and survival differs by characteristics of the cancer
as well as of the patient.
Research on the psychosocial impact of cancer should expand
its focus from only survivors to include others affected by the dis-
ease. For example, female caregivers serve multiple roles and face
many burdens across cultures. As noted by Marshall etal. (2011),
low-income female partners of those with cancer (co-survivors)
are under-researched, yet report more anxiety and depression
than male co-survivors and more depression than the general
population.22
Mitchell etal. (2013) conducted a meta-analysis of 43 studies to
make comparisons on the basis of anxiety or depression between
either long-term cancer survivors (defined as those alive two years
after diagnosis) and their spouses or healthy controls.23 Among
a pooled sample of 51, 381 cancer survivors, the prevalence of
depression, 11.6% (95% CI: 7.716.2), was 11% higher than the
prevalence among 217,630 healthy controls (95% CI:0.961.27).23
Among a pooled sample of 48,964 survivors, the prevalence of
anxiety, 17.9% (95% CI:12.823.6) was 27% higher than the prev-
alence among a pooled sample of 226,467 healthy controls (95%
CI:1.081.50).23 No significant differences were found when com-
paring the prevalence of depression and anxiety among survivors
to that among spouses (RR=1.01, 95% CI:0.861.20; RR=0.71, tion pharmacotherapy is no longer exempt from state Medicaid
95% CI:0.441.14, respectively).23 Differences in the psychosocial
impact of cancer among spouse and caregiver subpopulations
were not examined as part of thisstudy.
SUGGESTIONS FOR FUTURE RESEARCH
Cancer is a significant burden in both developed and developing
nations that is not experienced equally; differences and disparities
in incidence, prevalence, and impact exist among various popula-
tions, especially by age, gender, race/ethnicity, socioeconomic sta-
tus, and geographic location. Nearly 30% of cancer-related deaths
worldwide can be avoided through behavior modification, but
underlying risk factors are not equally distributed.24 Early diag-
nosis may result in more successful treatment and may reduce
cancer-related costs and mortality, but screening rates are below
Healthy People 2020 targets.14 Inequities in treatment, palliative
care and hospice care utilization, and survival also exist, especially
in low socioeconomic groups.10 Most research has been focused
on cancer incidence and mortality disparities within population
groups, while the psychosocial impact of cancer is largely under-
studied. Exploration of psychological comorbidities among indi-
viduals affected by cancer is limited, so further research is needed
to better quantify and then address disparities in the psychosocial
impacts of cancer across each sector of the CCC, especially among
minorities and specific populations.
Interventions to address disparities across the CCC, including
the psychosocial impacts of cancer, are clearly needed. To make
a lasting impact, interventions should be informed by a frame-
work that incorporates the breadth of multilevel contributing
factors. For example, the population health disparity model by
Warnecke et al. (2008) incorporates determinants of health at
the distal, intermediate, and proximal levels. Distal health deter-
minants include population social conditions and the policies,
policymakers, and institutions that influence them, which are
fundamental causes since health inequities exist at the population
level.25 Intermediate health determinants include characteristics
of communities, neighborhoods, and networks, and the physi-
cal and social contexts in which the effects of distal health deter-
minants are experienced. 25 Intermediate health determinants
such as the availability and accessibility of healthcare are means
through which distal health determinants affect proximal health
determinants, those at the level of the individual. 25 Proximal
health determinants include demographic characteristics (e.g.,
SES, race/ethnicity, gender) that have an independent effect from
those at the intermediate level, as well as behaviors (e.g., dietary
practices, exercise, and tobacco use), cultural beliefs, and biologi-
cal responses and pathways (e.g., risk from heredity or environ-
mental stress).25
For example, the Patient Protection and Affordable Care Act of
2010 (ACA) is national legislation with distal-, intermediate-, and
proximal-level impacts and the potential to reduce cancer-related
health disparities across the CCC in the United States. It seeks to
expand smoking cessation and vaccination access and to reduce
insurance-related barriers to screening, treatment, and end-of-life
care. As of March 2010, previously uninsured tobacco users, preg-
nant Medicaid beneficiaries, and eligible Medicare beneficiaries
have had access to at least minimum coverage for evidence-based
smoking cessation treatment and, as of 2014, smoking cessa-
programs prescription drug coverage.2 At no cost to beneficia-
ries, non-grandfathered private health plans and, beginning in
2014, qualified health plans on state-based insurance exchanges
must offer recommended vaccines like three doses of HPV vac-
cine at ages 1112.7 Also, select adult clinical preventive services
have been covered by Medicare in 2012; enhanced federal match-
ing funds for eligible state Medicaid programs that eliminate
cost-sharing for these clinical preventive services began in 2013,
and these and other recommended preventive services will be
covered at no cost-sharing for eligible private health plans under
state-based insurance exchanges in 2014.2 Cancer patients and
survivors may face fewer barriers to treatment and palliative and
hospice care due to an increase in insurance subsidies and the
elimination of insurance plans ability to place annual and life-
time caps on coverage or discriminate on the basis of ones current
health status or pre-existing health conditions, such as a history
of cancer or depression.2 Although it provides a natural experi-
ment for the study of health disparities and facilitates change at the
distal, intermediate, and proximal levels, the ACA alone cannot
end US cancer-related disparities, and its impact will be limited if
evidence-based psychosocial care is not integrated across theCCC.
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 CHAPTER83
DSM-5 and Psycho-Oncology
John W.Barnhill and Anna L.Dickerman
INTRODUCTION
The fifth edition of the Diagnostic and Statistical Manual of Mental
Disorders (DSM-5),1 published in 2013, features many revisions
that are especially pertinent to psycho-oncology. Some of these
changes involve structural reorganization, like the redistribu-
tion of DSM-IVs single anxiety disorder chapter into chapters on
anxiety, post-traumatic stress, and obsessive compulsive disorder.
Other changes are more specific to a single diagnosis, such as the
removal of the grief-exclusion of major depressive disorder (see
below for further discussion on this particular change).
DSM-5 remains a clinical manual whose primary aim is to
provide reliable, valid criteria that can aid in diagnosis and treat-
ment. Standardized diagnostic criteria promote a common lan-
guage and reduce the likelihood of idiosyncratic and misleading
terminology. DSM-5 also serves as an important educational tool
for both professionals and lay people. It does so not only through
well-known (and sometimes controversial) diagnostic criteria, but
also through extensive discussions of related features. These dis-
cussions accompany each diagnosis and include commentary on
diagnostic features, prevalence, development and course, risk and
prognostic factors, culture, suicide risk, functional consequences,
differential diagnosis, and comorbidity. In other words, DSM-5 is
not simply a bound collection of diagnostic checklists, but can in
fact be viewed as a thoroughly vetted textbook of psychiatry.
While hundreds of experts spent many years developing
DSM-5, the book makes no claim to being the final word on the
subject of psychiatric nosology. There has been much hope, for
example, that diagnoses will ultimately be clarified via findings
from hard science, butwith the exception of some of the sleep
disordersall psychiatric diagnoses in DSM-5 remain couched in
clinical assessment. In other words, while genetics and biomark-
ers may be of some interestand are explicitly discussed through-
out the DSM-5 textall psychiatric diagnoses ultimately depend
upon clinical judgment. DSM-5 aids the clinician in determin-
ing whether an individual warrants any diagnosis (e.g., without
clinically significant distress or impairment, there is generally
no diagnosis), but the clinician must decide whether or not any
particular symptom is severe enough to warrant clinical attention.
For example, dysphoria is common, but not every individual
who is dysphoric warrants a DSM-5 diagnosis.
This chapter will begin with a fairly detailed discussion of a sin-
gle change (the discontinuation of the term not otherwise speci-
fied), then will shift to briefer discussions of broad organizational
changes, and will finally review some of the changes in specific
diagnostic criteria most relevant to psycho-oncology.
AN EXAMPLE OF ACHANGE:NOT
OTHERWISE SPECIFIED
Changes within DSM-5 can be viewed as broadly organizational
or as specific to a particular diagnosis. One change that is both
organizational and specific relates to the elimination of the cat-
egory not otherwise specified (NOS). Diagnosticians have long
worried that NOS was being overused. Clinicians may overuse
NOS because they are not adequately careful in either the acquisi-
tion of information or in applying the DSM criteria. Some experts
have argued that the category NOS should hardly ever be used,
and that clinicians should simply work harder to conclude with
a more specific diagnosis. Such an argument has generally not
persuaded mental health practitioners who perform consultations
on medically ill people. Consultations are often brief, and NOS
can be an efficient, pragmatic way to clarify that a patient appears
to have a particular psychiatric disorder (e.g., bipolar disorder)
but that the clinician has not yet elicited confirmatory collateral
information and/or a clear clinical course or set of symptoms (e.g.,
DSM-IV bipolar disorderNOS).
DSM-5 addresses this issue by replacing NOS with two new
terms: other specified disorder and unspecified disorder.
These terms explain why the presentation does not meet criteria
for a particular disorder. For example, if a cancer patient is evalu-
ated to have a clinically significant depressive disorder but does
not meet full DSM-5 criteria for a major depressive episode, the
clinician could record other specified depressive disorder with
insufficient symptoms. If the clinician or researcher is unable or
does not wish to specify the reason that full criteria are not met,
he or she can diagnose unspecified depressive disorder. Such a
diagnosis may be especially useful in consultation situations in
which the clinician has not yet accumulated enough clinical or
collateral information to be confident about the diagnosis.
Diagnostic philosophy is a second reason that NOS had been
widely used. In an effort to create relatively homogeneous clini-
cal groupings, DSM-IV raised a relatively high bar for many spe-
cific diagnoses. For example, there were only two DSM-IV eating
disordersanorexia nervosa and bulimia nervosaand qualify-
ing criteria were relatively stringent. In practice, this led over half
the patients in eating disorder clinics to receive a diagnosis of eat-
ing disorder NOS. This might have led to relatively homogeneous

groups of people with anorexia and bulimia, but it was too non-
specific to guide the evaluation and treatment for most patients.
DSM-5 has addressed this problem in two ways. First, the crite-
ria required for both anorexia and bulimia have been made less
restrictive. While there has been concern that this loosening of
criteria could potentially pathologize normal people, studies
indicate that patients who almost met DSM-IV criteria are in
fact very similar to those who met full criteria. In addition, these
individuals were already being diagnosed with some sort of eat-
ing disorder; thus the slight loosening of criteria does not appear
to inevitably expand the number of people identified as having
anorexia or bulimia. Asecond change within the eating disorders
chapter has been the addition of two new diagnoses:binge eating
disorder and avoidant/restrictive food intake disorder (ARFID).
Binge eating disorder had been among the disorders identified
for further study, and it should describe a significant percentage
of the patients who were previously diagnosed as having eating
disorderNOS.
ARFID is likely to be a diagnosis often considered within
psycho-oncology since it describes people who restrict or avoid
food without the underlying body image disturbance that is the
hallmark of anorexia nervosa. ARFID does not apply to those who
are losing weight because of chemotherapy-induced nausea and
vomiting, but it might apply to a situation in which the refusal to
eat has persisted beyond the actual nausea, has taken on a life of its
own, or otherwise has become a focus of clinical attention. These
changes within the eating disorders chapter appear to reflect clini-
cally valid subpopulations and are designed to allow for more spe-
cific diagnoses and treatments.
While the rest of DSM-5 has been debated from a variety of
angles, the rest of this chapter will focus on the actual changes
that appear most relevant to psycho-oncologists. Interested read-
ers are encouraged to investigate the suggested readings for dis-
cussion of the controversies and directions for further study.2
ORGANIZATIONAL CHANGES
DSM-5 continues to diagnose via categories that require certain
clinical diagnostic criteria. For example, the diagnosis of major
depressive disorder means that a clinician has assessed a patient
to have at least five of nine clinically relevant symptoms for at least
two weeks, along with clinically significant distress or impairment.
In addition, the clinician has decided that the symptoms are not
attributable to the physiological effects of a substance or to another
medical condition. To clarify the range of severity within an identi-
fied diagnosis, DSM-5 allows for two different modifiers. For major
depressive disorder, for example, a patient might only have four
of the nine symptoms but may appear to have a clinically relevant
depression. In DSM-IV, many clinicians might have opted to diag-
nose the patient with adjustment disorder with depressed mood as
a sort of general term for mild depression. DSM-5 expressly warns
against this practice, indicating that the diagnosis of adjust-
ment disorder is listed among the trauma-related disorders and
should be applied only to people who have suffered an identifi-
able stressor that appears to be implicated in the depression. For
psycho-oncologists, such a stressor might be a recent diagnosis of
metastatic cancer or the experience of a lengthy, difficult hospital-
ization. For other patients who lack adequate criteria for the diag-
nosis of major depressive disorder, the correct DSM-5 diagnosis
Chapter83 DSM-5 and Psycho-Oncology 619
would be other specified depressive disorder, with insufficient
symptoms. DSM-5 also allows for a severity specifier for many of
the diagnoses (e.g., mild, moderate, and severe).
The spectrum of illness severity is also critical in assessing
patients whose thoughts, feelings, and behaviors lie on a contin-
uum between the normal and the pathological. This dimensional
perspective contrasts with the categories of DSM-IV. Dimensions
were especially controversial within the personality disorders. 3,4
Many experts wanted to continue the use of DSM-IV personal-
ity disorder categories because of their familiarity to psychiatrists
and the large amount of research done using this terminology.
Other experts focused on the failings of these categories, such
as excessive intercategory comorbidity and intracategory varia-
tion. In addition, some disorders (e.g., paranoid personality) were
hardly ever diagnosed without at least one other personality disor-
der diagnosis. These critics wanted to adapt the five factor model
from the field of psychology and create a hybrid dimensional/cat-
egorical model for personality. After much debate, DSM-5 person-
ality disorders are essentially reprinted from DSM-IV. The hybrid
dimensional/categorical approach is presented as an alternative
model within Section III of the DSM-5text.
In regard to the overall structure of DSM-5, an important
change is the elimination of the axial system. Diagnostic lists
rank order the disorders based primarily on which diagnosis is
the subject of the clinical attention. For example, a patient might
have both schizophrenia and a severe tobacco use disorder.
Generally, the schizophrenia would be listed first. If the patient
were being treated at a smoking cessation clinic, the tobacco use
disorder might be listed first. While the axes are gone, the under-
lying concepts remain important to the clinical evaluation. For
psycho-oncologists, the former Axis III remains crucial since
many non-psychiatric diseases and medications can affect psychi-
atric and behavioral presentations. Psychosocial and environmen-
tal problems (previously DSM-IVs Axis IV) are also important
and are addressed among other conditions that may be a focus of
clinical attention in Section II of DSM-5. These stressors are orga-
nized through the use of Z Codes published in the International
Classification of Diseases and Related Health Problems (10th edi-
tion; ICD-10) by the World Health Organization (WHO). Given
the lack of clarity and questionable psychometrics associated
with the Global Assessment of Functioning (GAF) scale of Axis
V, the DSM-5 now recommends the use of the WHO Disability
Assessment Schedule (WHODAS). The WHODAS is available in
Section III ofDSM-5.
While the axial system has been eliminated, the DSM-5 text
continues to cluster disorders in multiple ways. For example, dis-
orders that tend to develop earlier in life (e.g., neurodevelopmental
and schizophrenia-spectrum disorders) are clustered in chapters
at the beginning of the book, while those associated with mature
adulthood (e.g., neurocognitive disorders) appear toward theend.
A second DSM-5 grouping relates to disorders with symptoms
that are internalizing versus those that are externalizing.
Internalizing disorders are characterized by prominent anxiety,
depressive, and/or somatic symptoms, while externalizing disor-
ders are notable for prominent impulsivity, conduct disturbances,
and/or substance use. This leads the depressive and anxiety dis-
orders to be clustered together, for example, and the disruptive,
impulse-control, and conduct disorders to be described alongside
the substance-related and addictive disorders.
620 SectionXIII cross-cuttingissues
DSM-5 recognizes that symptoms and disorders must be
understood within a greater cultural, social, and familial context.
Acultural formulation appears in Section III, for example, aid-
ing the clinician in making an in-depth cultural assessment of
the patient. In addition, each of the DSM-5 diagnostic discussions
includes summaries of pertinent factors related to gender, culture,
sexual orientation, and the reproductive lifecycle.
SPECIFIC DIAGNOSTIC CRITERIA OF
SPECIAL INTEREST IN PSYCHO-ONCOLOGY
In addition to broader changes related to classification of dis-
orders, there have been specific changes that affect individual
diagnoses in DSM-5. While a comprehensive review of DSM-5
terminology and diagnostic criteria is beyond the scope of this
chapter, we have highlighted here some major changes most rel-
evant to psycho-oncologists.
Depressive Disorders
The chapter on depressive disorders includes several changes that
have been the subject of significant scrutiny. Most of the contro-
versy relates to whether or not the changes pathologize normal
behavior.
Recognizing that grief is a normal human reaction, DSM-IV
recommended that a diagnosis of major depressive disorder
(MDD) be deferred for two months after the death of loved one
(i.e., the so-called bereavement exclusion). Evidence from the
literature indicates, however, that the vast majority of grieving
people do not develop symptoms that meet criteria for MDD.5,6
Those who do meet MDD criteria soon after the death of a loved
one tend to have more intense feelings of guilt, worthlessness,
and suicidality, and functional decline is more intense. In addi-
tion, such individuals have elevated rates of depressive disor-
ders in their personal and family histories, tend to have a worse
prognosis, and tend to respond more frequently to antidepres-
sant medications. These patients thus clinically resemble those
who develop MDD in other circumstances, and warrant the same
level of clinical attention. For these reasons, DSM-5 eliminated
the bereavement exclusion.
Psycho-oncologists commonly treat patients who become
depressed in the context of a serious illness. Some of these people
appear to develop symptoms of a serious depression as the direct
physiologic effect of another medical condition (e.g., pancreatic
cancer). Such patients meet criteria for the DSM-5 diagnosis
depressive disorder due to another medical condition. This
diagnosis is not intended to describe individuals whose symp-
toms stem from a psychological response to illness, which would
more accurately be classified as an adjustment disorder with
depressed mood or a major depressive disorder. This is a some-
what artificial dichotomy between the physiologic and psycho-
logical; in reality, they frequently coexist. The clinician is asked,
therefore, to make a judgment regarding which etiology appears
more contributory.
Medications and Substances ofAbuse
Psychiatric symptoms such as depressed mood often occur in
patients who are taking prescribed medications and/or illicit
substances. DSM-5 clarifies diagnoses in these often compli-
cated patients. For example, if the patient is depressed prior to
taking a potentially psychoactive medication or substance, major
depressive disorder (MDD) should be diagnosed. Many cancer
patients are prescribed medications that can induce depres-
sion (e.g., interferon and steroids). If the depression appears to
have evolved after one of these medications was begun, then a
more accurate diagnosis is substance-induced major depressive
disorder. This diagnostic differentiation can often be ambigu-
ous. For example, if the patient has had recurrent MDD in the
past without any medications and appears to be suffering a
recurrence after being started on a medication with known
psychiatric side effects, the most likely diagnosis will be MDD
rather than substance-induced MDD. If the depressed mood of
substance-induced MDD persists for a month after the discon-
tinuation of the medication, then the diagnosis generally shifts
to MDD. DSM-5 clarifies that the distinction in such situations is
likely to be somewhat artificial, however, and that the clinician is
advised to use judgment regarding further use of the potentially
psychoactive medications.
Alcohol, opiates, benzodiazepines, and other potential sub-
stances of abuse are sometimes used and abused by cancer
patients (just as they are by people without cancer). Important
DSM-5 changes include the discontinuation of the terms abuse
and dependence. Instead, clinicians are asked to use the term
use disorder (e.g., alcohol use disorder), modified by the speci-
fiers mild, moderate, and severe. DSM-5 also discontinues the use
of the term polysubstance. Instead, the clinician is asked to list
all of the appropriate substances (e.g., cocaine use disorder, mod-
erate; opiate use disorder, severe,etc.).
Bipolar and Related Disorders
Patients with cancer may develop classic manic or hypomanic
symptoms in the setting of a physiological trigger. For exam-
ple, a patient may develop manic symptoms immediately after
receiving a course of prednisone as part of his or her chemo-
therapy regimen. The clinician is then faced with the diagnostic
dilemma of determining whether the patient has an underlying
bipolar illness or a common reaction to steroids (often inaccu-
rately called steroid psychosis). If the manic symptoms are
deemed to be secondary to the steroid treatment, the patient
would warrant the diagnosis of medication-induced bipolar
disorder. If the patients mood symptoms are thought to be due
to an underlying medical or neurologic conditionfor example,
a brain tumor in the frontal lobethe most appropriate DSM-5
diagnosis would be bipolar disorder due to another general
medication condition.
Trauma- and Stressor-Related Disorders
The chapter on trauma- and stressor-related disorders is new in
DSM-5. These disorders are unique within DSM-5 in that they
require the identification of a triggering external event. Patients
with cancer are often exposed to traumatic experiences, be they
related to the symptoms, treatment, or downstream psychosocial
effects of their illness.7
Post-traumatic and acute stress disorders (PTSD and ASD)
have been moved from the DSM-IV anxiety disorders chapter
into their own chapter on trauma and stressor-related disorders.
As in DSM-IV, PTSD must persist for at least one month after
the external stressor or trauma, while ASD must last less than
one month. Adiagnosis of PTSD requires symptoms from each

of four different clusters (increased from the previous three clus-
ters); these include intrusive symptoms (previously referred to as
re-experiencing), avoidance symptoms, negative alterations of
cognition and mood, and arousal symptoms. Requiring symp-
toms from four different categories should lead clinical PTSD
populations to be relatively homogeneous. In contrast, acute
reactions to external traumas or stressors are more variable. To
be diagnosed with ASD, individuals are required to have at least
nine of 14 symptoms, but they need not have symptoms from
multiple different clusters. For both PTSD and ASD, there is now
a specifier for whether the trauma was witnessed, experienced, or
experienced indirectly.
Adjustment disorders have historically been utilized as a resid-
ual category for distressed people who do not meet criteria for a
more specific disorder. DSM-5 conceptualizes the adjustment dis-
orders more specifically as stress-response syndromes that occur
in the context of distressing events. Life-threatening illness such
as cancer is an example of such a stressor. Symptoms must impair
function and may not be part of bereavement; they also may not
persist for more than six months after the stressor and its conse-
quences (i.e., the six-month limit can be exceeded if the stressors
are recurrent). As in DSM-IV, a diagnosis of adjustment disorder
should include a specifier that identifies the predominant distur-
bance (e.g., depressed mood, anxiety, disturbance of conduct, or
a combination).
Somatic Symptom Disorders
The chapter on somatic symptom disorders (formerly referred to
as somatoform disorders) has undergone significant revision in
DSM-5. The most salient change relevant to mental health prac-
titioners who work with the medically ill is that DSM-5 no lon-
ger requires that the patients somatic complaints be medically
unexplained.8 Instead, these disorders are now characterized by
abnormal thoughts, feelings, and behaviors in response to somatic
symptoms. Thus, patients who have physiologically based medi-
cal diagnoses may now receive a diagnosis of somatic symptom
disorder if they develop a pathologic psychological response to
their physical symptoms. An example in psycho-oncology would
be the cancer survivor who subsequently develops hypervigi-
lance to any slight somatic sensation, spends hours researching
his or her symptoms on the Internet, and frequently presents to
his or her oncologist concerned about recurrence. The difference
between this diagnosis and adjustment disorder, for example, is
that the patients distress revolves specifically around the somatic
symptoms.
DSM-5 has also created a new diagnosis to identify patients
with psychological or behavioral factors that are adversely
impacting their medical problem or care. Abroad term that may
be applied to many types of patients, DSM-5 psychological fac-
tors affecting other medical conditions (PFAOMC) is likely to
be frequently used by professionals who work with the medi-
cally ill. For example, a cancer patient who is in denial of signs or
symptoms of recurrence may delay a visit to his or her oncologist,
thereby delaying treatment and potentially leading to a worsened
outcome. Another example of PFAOMC would be suboptimal
adherence to chemotherapy because the patient has developed a
belief that he knows best how to manage his cancer. This diag-
nosis should be used only in cases in which the psychological or
behavioral issues directly cause an exacerbation of the medical
Chapter83 DSM-5 and Psycho-Oncology 621
condition. If the behavior that worsens the comorbid medical
condition is better explained by another psychiatric condition
(e.g., substance use, psychotic, mood, or anxiety disorders), the
other psychiatric condition should generally be noted, rather
than PFAOMC.
Neurocognitive Disorders
Neurocognitive disorders can be divided into the acute (delirium)
and the more chronic neurocognitive disorders (NCDs). The
term dementia can still be used to describe progressive cogni-
tive decline of disorders such as Alzheimers disease, but DSM-5
encourages the use of the term neurocognitive disorder for two
reasons. First, dementia is viewed by some people as a stigma-
tizing term. Second, dementia implies inexorably progressive
decline, and neurocognitive disorder might better include the
abrupt and static cognitive problems related to traumatic brain
injury.9 Though the term neurocognitive implies an emphasis
on cognitive impairment, DSM-5 describes deficits in multiple
domains (e.g., social cognition).
As in DSM-IV, delirium is identified by a fluctuating dis-
turbance of attention, arousal, and cognition. DSM-5 explicitly
requires evidence directly linking the disturbance to a physiologic
abnormality or insult. This is a somewhat unusual diagnostic cri-
terion within DSM-5 in that it necessitates a search for underlying
etiology. Delirium can be further specified by duration and level
of activity (hyper- or hypoactive).
The DSM-5 definition of major neurocognitive disorder is
essentially analogous to DSM-IV dementia. However, the diag-
nostic approach no longer requires memory impairment, as this
may not be a prominent feature of all NCDs. Impairments are
now classified by domains that include, among others, executive
function, language, and complex attention. Furthermore, DSM-5
only requires impairment in one of these domains, making it
easier for someone to receive a diagnosis of major neurocognitive
disorder.10
Mild neurocognitive disorder is a new category that is meant
to bring to clinical attention groups of patients who may have
more subtlebut still clinically significantimpairment. As is
the case when making other DSM-5 diagnoses, careful clinical
judgment should be used to avoid excessive pathologizing (in this
case, diagnosing mild neurocognitive disorder in someone who
actually has mild cognitive impairment associated with normal
aging). Recognition of mild neurocognitive disorder is intended
to enhance preventive care by bringing to clinical attention those
patients who have subtle deficits that are likely to become clini-
cally significant. It is hoped that recognition early in the trajectory
of the dementias will promote the development of effective early
interventions.
REFERENCES
1. American Psychiatric Association. Diagnostic and Statistical Manual
of Mental Disorders, 5th ed. Washington, DC:American Psychiatric
Publishing;2013.
2. Barnhill JW, ed. DSM-5 Clinical Cases. Washington, DC:American
Psychiatric Publishing;2013.
3. Gunderson JG. Seeking clarity for future revisions of the personality
disorders in DSM-5. Personal Disord. 2013;4:368376.
4. Skodol AE, Morey LC, Bender DS, Oldham JM. The ironic fate
of the personality disorders in DSM-5. Personal Disord. 2013
Oct;4(4):342349.
622 SectionXIII cross-cuttingissues
5. Friedman RA. Grief, depression and the DSM-5. N Engl J Med
2012;366(20):18551857.
6. Mojtabai R. Bereavement-related depressive episodes:characteristics,
3-year course, and implications for the DSM-5. Arch Gen Psychiat.
2011;68(9):920928.
7. Akechi T, Okuyama T, Sugawara Y, etal. Major depression, adjust-
ment disorders, and post-traumatic stress disorder in terminally
ill cancer patients:associated and predictive factors. J Clin Oncol.
2004;22(10):19571965.
8. Levenson JL. The somatoform disorders:6 characters in search of an
author. Psychiatr Clin N Am 2011; 34(4):515524.
9. Blazer D. Neurocognitive disorders in DSM-5. Am J Psychiatry
2013;170(6):585587.
10. Rabins PV, Lyketsos CG. A commentary on the proposed DSM revi-
sion regarding the classification of cognitive disorders. Am J Geriatr
Psychiat. 2011;9(3):201204.
 SECTION XIV

Survivorship

84 Fear of Cancer Recurrence 625 87 Implementing the Survivorship Care

Phyllis N.Butow, Joanna E.Fardell, Plan:AStrategy for Improving the Quality
and Allan BenSmith ofCare for Cancer Survivors 644

85 Positive Consequences of the Experience Erin E.Hahn and Patricia A.Ganz

of Cancer:Perceptions of Growth 88 Adult Survivors of Childhood Cancer 651
and Meaning 630 Lisa A.Schwartz, Branlyn Werba
Annette L.Stanton DeRosa, and Anne E.Kazak
86 Changing Health Behaviors After 89 Adolescents and Young Adults
Treatment 635 with Cancer 657
Elizabeth Eakin and Wendy Demark-Wahnefried Bradley J.Zebrack and Sheila J.Santacroce
 CHAPTER84
Fear of Cancer Recurrence
Phyllis N.Butow, Joanna E.Fardell,
and Allan Ben Smith
INTRODUCTION
Improved medical treatments have led to higher survival rates
from many cancers. There were 32.6million people living with
cancer (within 5 years of diagnosis) in 2012 worldwide.1 In
2005, the US Institute of Medicine released a landmark report
From Cancer Patient to Cancer Survivor: Lost in Transition. 2
The report was critical of the paucity of intervention research to
address the psychosocial consequences of cancer and its treat-
ment. The most prevalent unmet supportive care need in cancer
survivors is help with fear of cancer recurrence (FCR). 3 FCR,
broadly defined, is the fear or worry that cancer could return
or progress in the same place or another part of the body. 4
However, most commonly, FCR is used to describe the fear that
cancer could return in survivors who have had treatment with
the goal of cure.
CONCEPTUALIZATION AND
MEASUREMENT OF FCR
The conceptualization of FCR is still formative, with no
widely accepted models of its nature, multidimensional-
ity, or clinical significance as yet. To date, only one study has
attempted to establish a clinical cutoff score for FCR (on the
Fear of Cancer Recurrence Inventory Severity Subscale) using
a purpose-designed face-to-face semi-structured interview of
FCR as a gold standard measure. 5,6 Although this study was
conducted using rigorous methodology, the diagnostic interview
used has not yet been validated, and so the suggested cutoff of 13
can only be considered preliminary. There is some evidence sug-
gesting that this cutoff has strong sensitivity but may also falsely
identify many people with clinical levels of FCR when this is not
the case.7
Furthermore, a multiplicity of FCR measures has emerged in
the literature. Asystematic review of FCR measures identified 20
multi-item questionnaires, each using slightly different defini-
tions and emphasizing diverse aspects of FCR.8 The psychometric
properties of longer measures were relatively well established, but
shorter measures (i.e. 010 items) had generally reported prelimi-
nary psychometric characteristics only. Consequently, research-
ers and clinicians need to carefully consider their specific purpose
when selecting a measure of FCR.8
PREVALENCE OF FCR
Some degree of FCR is reported by almost all cancer survivors and
caregivers.9,10 Arecent systematic review of quantitative studies
on FCR found that across different cancer sites and assessment
strategies, 39%97% of cancer survivors reported some degree of
FCR (on average 73%); 22%87% reported moderate to high levels
of FCR (on average 49%); and 0%15% reported a high level of
FCR (on average 7%).11 Some studies have reported even higher
levels of FCR among caregivers than patients.9
Furthermore, FCR does not always decrease with time, even
when the risk of recurrence is low.1114 For example, 70% of women
with breast cancer continued to experience elevated FCR levels
five years after diagnosis,15 while 24% of testicular cancer survi-
vors on average 11years post-diagnosis reported FCR bothered
them quite a bit and 7% very much.13 In the systematic review
described above,11 21 cross-sectional studies were identified that
explored associations between time since diagnosis and FCR
severity, with only one study reporting a significant association,16
reinforcing the stability of FCR over time. However, the identified
studies had obtained data only up to six years post-diagnosis,11
so information about the long-term trajectory of FCR is currently
unavailable.
CONSEQUENCES OF FCR
Adjustment to the possibility of cancer recurrence is sometimes
reported as more problematic than adjustment to the initial
diagnosis.17 High FCR levels have been shown to have a negative
impact on quality of life (QOL), psychological adjustment, emo-
tional distress and anxiety, ability to establish future goals and
plans, intrusive thinking, and dysfunctional behavior, including
preoccupation with cancer and intrusive checking for signs of can-
cer,3,18 and on caregiver QOL.19 However, Simard etal. argue that
the large number of concepts explored means that the evidence
base for any one psychological impact is weak.11 Furthermore,
Lebel etal. showed that change in FCR did not lead to changes in
distress and intrusions/avoidance over time.20
FCR has also been associated with higher usage of medical
services and increased medical costs.10,21 For example, survivors
with high FCR are less satisfied with their care,18 and more likely
to refuse discharge from a cancer center for follow-up, 22,23 to seek
626 Section XIV survivorship
re-admission to a specialized cancer center, 22 and to use more
complementary and alternative medicines.10,2426 Additionally,
studies examining dysfunctional fear in other medical illnesses,
such as chronic arthritis,27 have shown that reductions in patients
fears of disease progression through psychological interventions
lead to significant reductions in direct medical costs per patient.
Thus the impact of high FCR is wide-ranging, with potential costs
to the individual, the family, and wider society.
PREDICTORS OF FCR
Studies that have explored associations between social and demo-
graphic characteristics and FCR report inconsistent findings.
Younger age is the one factor consistently found to be associated
with higher FCR,4,10,15 perhaps because cancer diagnosed at a
younger age is often more aggressive. Some studies have shown
that females, minority groups, and those with lower education
and lower income, experience higher FCR; however, other studies
have reported negative or contradictory findings concerning these
variables.11 Arecent study found that fulfilling a caregiving role,
such as being a young mother, was associated with higher FCR.28
However, another study reported no associations between having
children, attitudes toward future pregnancy, and FCR in young
breast cancer survivors.29 Thus the contribution of sociodemo-
graphic variables to FCR remains uncertain.
Somewhat counterintuitively, FCR is not necessarily linked
to prognostic indicators such as stage of disease and treatment
received.14,30 Simard et al.s systematic review identified 11 stud-
ies reporting that prognostic indicators (e.g., TNM stage, PSA
level, Gleason score, and presence of positive margin) were posi-
tively associated with FCR but 16 studies found no association.11
Similarly, having had a recurrence or metastatic diagnosis was sig-
nificantly associated with FCR in five studies but was unrelated in
four studies, and there was only weak evidence supporting a rela-
tionship between FCR and treatment type. However, eight studies
reported a significant positive association between risk perception
or optimism and FCR.12 This suggests that assessment and review
of unrealistically high subjective risk may be a strategy for combat-
ing excessive FCR.
Simard etal. also reported strong evidence from 22 studies of
a relationship between FCR and symptom experience, particu-
larly global symptom burden, pain, fatigue, and body image con-
cerns.11,14,30 Thus symptoms that remind survivors of their cancer
diagnosis, perhaps interpreted as possible signs of a cancer recur-
rence, may increase survivors FCR. These data suggest that edu-
cation about the meaning of symptoms and those more likely to be
related to recurrence may be helpful for survivors.
With regard to psychological predictors of FCR, Simard etal.
reported strong, although inconsistent, evidence that distress,
depression, anxiety, and avoidance/intrusion are associated
with higher FCR.11 Some studies have also reported an associa-
tion between FCR and diagnosed anxiety or psychiatric condi-
tions. For example, Thewes etal. reported that about one-third to
one-half of young women with breast cancer with clinical levels of
FCR additionally met criteria for global anxiety disorder (GAD)
or hypochondriasis.29 However, as the majority did not suffer such
comorbidity, the authors suggested that high FCR was not neces-
sarily accompanied by broad-ranging pathological worry, includ-
ing about health. Simard etal. argued that different FCR severity
profiles variably contain features of GAD or obsessive compulsive
disorder, 31 but also acknowledge that the relationship between
psychological factors and FCR is most likely bi-directional.11
UNMET NEED FOR HELP WITH
MANAGING FCR
Despite the high prevalence and potential cost of FCR, survi-
vors report high levels of unmet need for help managing FCR,
suggesting that many cancer services are not currently provid-
ing adequate care in this area. Amulticenter Australian study
(n=388) found that FCR was survivors greatest area of unmet
need, with 26% reporting moderate to high unmet need for help
with FCR, 32 similar to that reported in a large UK study of 1425
cancer survivors at treatment completion (30%) and six months
later (26%). 33 Both consumers and psycho-oncology clinicians/
researchers identify finding effective interventions for FCR as a
top priority for future funding and research. 34 In a survey of 123
oncology health professionals, 31% reported spending more than
25% of the time in follow-up consultations discussing FCR, 46%
found dealing with FCR challenging, and 71% were interested
in further training in managing FCR. 35 These results emphasize
the need for developing effective theoretical and evidence-based
treatments for FCR.
THEORETICAL PERSPECTIVES ON FCR
Two theoretical models have been previously used to explain FCR,
the trade-off hypothesis and the self-regulation of illness or
common sense model (CSM). More recently, the self-regulatory
executive function model36 and relational frame theory37 have
been proposed. 38 These perspectives are presented below.
The Trade-Off Hypothesis
The trade-off hypothesis focuses on the role of uncertainty in
maintaining FCR, suggesting that the more treatment is perceived
as effective, the less uncertainty patients experience about treat-
ment outcomes and the lower their FCR. 39,40 However, evidence
for differences in FCR based on treatment outcomes is inconsis-
tent.3941 Furthermore, the trade-off approach does not clearly
lead to intervention approaches.
Self-Regulation of Illness Model/Common
Sense Model (CSM)
The self-regulation of illness or common sense model (CSM) pro-
poses that when individuals are confronted with a health threat, an
illness representation is activated, consisting of cognitive (for FCR,
perceived personal risk of recurrence) and emotional (for FCR,
worry about the cancer returning, anxiety about cancer itself, and
regret about treatment decisions) motivational processing systems
that act together to guide coping.38,42,43 Lee-Jones etal. hypoth-
esised that survivors who view their cancer as chronic, with nega-
tive and uncontrollable consequences, are likely to engage in more
emotional processing of health threats and to have high levels of
FCR.43 There is some evidence for the CSM in FCR; individuals
who believe they are vulnerable to cancer are more emotionally
aroused by somatic stimuli and display higher levels of FCR, while
adaptive coping strategies are associated with lower FCR.12,4345
However, the model proposed by Lee-Jones etal.43 does not take

into account the existential issues that arise for cancer survivors,
nor does it address the factors that maintain dysfunctionally high
FCR levels.
Self-Regulatory Executive Function (S-REF)
Model of Anxiety Disorders
The S-REF model 36 addresses maintaining factors associated
with anxiety disorders and has been used to effectively treat
health anxiety.4648 It proposes that a thinking style, the cog-
nitive attentional syndrome (CAS), prolongs and intensifies
distressing emotions. CAS consists of self-focused attention,
worry, and rumination; attentional bias toward threat-related
information; and maladaptive coping behaviors (e.g., sup-
pression, avoidance, minimization), which impair flexible
self-control and prevent corrective learning experiences. The
S-REF model argues that beliefs about ones thoughts (or meta-
cognitive beliefs) underlie the activation of CAS. 36 CAS domi-
nates in individuals with unhelpful metacognitive beliefs about
the importance, impact, and uncontrollability of worry, such as
if Iworry Iwill be prepared, or bad thoughts can make bad and exercises promoting control beliefs and benefit-finding, 63
things happen.
Previous research has shown that anxious cancer patients display
an attentional bias toward threatening stimuli,4951 and FCR level
appears to be associated with metacognitions and beliefs about
cancer vulnerability.12,4345 The S-REF model appears particularly
applicable to FCR because the belief that cancer might recur is not
entirely irrational and hence a focus on cognitive processes rather
than content could be advantageous, and it explains why elevated
emotional responses after cancer diagnosis are maintained.38
Relational Frame Theory (RFT) and Acceptance
andCommitment Therapy (ACT)
While both the CSM and S-REF explain FCR, neither explicitly
addresses the existential issues that arise when cancer is diag-
nosed. Acceptance and commitment therapy (ACT), 37 based on
RFT, focuses on increasing cognitive flexibility and emphasizes
accepting feelings, thoughts, and sensations when attempts to
control them are counterproductive and prevent the individual
from acting in line with desired goals and values. 37,52 As such,
ACT aims to help clients develop more clarity about what is
important to them (i.e., their values), and to establish behavioral
goals in accordance with their present values.37
ACT has recently been applied in the cancer context with prom-
ising results.5355 For example, Rost et al. 54 found women with
advanced ovarian cancer randomized to receive ACT experienced
improvements in QOL despite deteriorating health. In addition,
although it is yet to be empirically evaluated in randomized con-
trol trials, psychosocial health professionals in oncology settings
have identified ACT as offering clinically useful strategies for
treating FCR.35
INTERVENTION STUDIES
Only one paper has reported an intervention specifically designed to
reduce FCR (6 face-to-face individual sessions with a psychologist),
based on the CSM, which produced positive results with reduced
FCR immediately post-intervention in the intervention group
versus no change in FCR in the control group.56 Several studies
have investigated interventions targeting concepts similar to FCR.
Chapter84 fear of cancer recurrence 627
Herschbach et al.57 compared cognitive behavior group therapy
(CBT) or supportive-experiential group therapy (SET) with usual
care over 12 months on fear of disease progression (FoP),58 with both
intervention groups showing a significant reduction in FoP over
time compared to the control group. Heinrichs et al.59 similarly
showed that a couple-skills intervention reduced FoP compared to a
control cancer education program, in breast and gynecological can-
cer patients and their caregivers. However, these benefits were not
maintained at follow-up, 16 months post-diagnosis. A third study
reported that a nurse-led telephone intervention for uncertainty
management in long-term survivors of breast cancer increased cog-
nitive reframing and cancer knowledge compared to the usual care
control group.60
Several other studies have reported improvements in FCR as
secondary outcomes of group therapies designed to improve
generic emotional outcomes, including a six- to eight-session
mindfulness-based stress reduction group (no long-term data
published),61,62 a 12-week emotion regulation group that included
training in guided imagery, meditation, emotional expression,
and a pilot of a 12-week group mindful movement/dance therapy
program.64 Finally, two telephone-based interventions failed to
reduce levels of FCR.65,66 Thus further research evaluating FCR
interventions is required.
SUMMARY
Fear of cancer recurrence (FCR) is broadly defined as the fear or
worry that cancer could return or progress in the same place or
another part of the body. Some degree of FCR is almost universal
among cancer survivors, and is frequently reported as an unmet
need. Conceptualization and measurement of FCR is currently
challenging, as no consensus has been established regarding its
multidimensional nature and presentation. Accordingly, esti-
mated prevalence rates of cancer survivors experiencing clini-
cal levels of FCR vary widely between research studies. Research
suggests that FCR remains stable over time, and that those who
are younger, have greater symptom burden, and have greater
psychological distress are likely to have higher levels of FCR. In
contrast, medical (diagnosis staging, treatment, etc.) and other
demographic variables do not appear to be associated with FCR
levels. Those who experience a high level of FCR have poorer
QOL, and experience difficulties moving on with their life after
cancer diagnosis and treatment. However, there are very few
intervention studies reported in the literature to guide health
service provision, and no empirically tested theory-driven
interventions.
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 CHAPTER 85
Positive Consequences of
the Experience of Cancer
Perceptions of Growth and Meaning
Annette L.Stanton
I feel so grateful each morning to wake up in my bed and feel
so good and alive and eager to face another day. The inherent
goodness of my family and friends has been a really positive
aspect. They are all so supportive and make me feel like such
a loved and special person...Ifeel like Imake more time for diagnosis) to responses of age- and sex-matched adults with no
my friends and family. Ialso do more things for myself and
dont feel guilty about it. Ifeel like this makes me a calmer,
happier woman.
Research participant diagnosed with breast cancer1
In their conversations with individuals diagnosed with cancer,
researchers and clinicians in psycho-oncology are likely to hear
statements such as the one above, offered by a woman living with
breast cancer. Indeed, it seems impossible to interact intensively
with individuals affected by cancer without becoming aware of
the benefits that some derive as they struggle with the demands
of the experience. This chapter begins with a consideration of the
prevalence and meaning of finding benefit in the experience of
cancer, followed by a summary of findings on the conditions that
promote benefit finding, as well as the role of benefit finding in
adjustment to cancer. The chapter closes with thoughts on the
clinical implications of the research on finding benefit in cancer.
FINDING BENEFIT IN THE EXPERIENCE OF
CANCER:PREVALENCE AND SIGNIFICANCE
Reviewing the empirical literature on finding benefit in the expe-
rience of cancer, Stanton, Bower, and Low2 found that positive life
changes are reported by the majority of individuals diagnosed
with a variety of cancers, including cancers of the breast, lung,
colon, prostate, and others. Most adolescent and adult survivors of
childhood cancers also report finding benefit. Finding benefit in
the cancer experience increases over time, at least through approx-
imately the first two years after diagnosis, and then plateaus or
declines.37 In addition, cancer patients are more likely to report
growth through their experience than are comparison adults
reflecting on change over similar time frames. Andrykowski,
Steffens, Bush, and Tucker8 compared the responses on the
Posttraumatic Growth Inventory (PTGI)9, a commonly used
measure of perceived benefit arising from a designated stressor,
of adults with lung cancer (16months average time elapsed since
cancer history who completed the PTGI to refer to the extent
of change in the past year. Lung cancer survivors reported sig-
nificantly more post-traumatic growth than did the comparison
sample, and they reported more growth in the specific domains of
relating to others, appreciation of life, and personal strength (but
not spirituality or new possibilities in life).
Several domains of benefit are reported by individuals diag-
nosed with cancer. A primary perceived benefit involves the
interpersonal realm, including heightened intimacy, awareness
of ones importance to significant others, and compassion.10
Heightened appreciation for life, a bolstered sense of personal
strength, deepened spirituality, and valued change in life priori-
ties and goals also are commonly cited. Such benefits also are evi-
dent in the broader literature on perceived positive change from
traumatic experiences (i.e., post-traumatic growth, Tedeschi and
Calhoun),9,11 although distinct stressful or traumatic events cata-
lyze the report of benefit to different degrees. Aunique category
of benefit spontaneously offered by individuals with cancer (and
other medical stressors) regards improvement in health-related
behaviors.10
What does it mean to report benefit from the experience of a
life-threatening disease? In part, benefit finding might represent
a natural propensity to maintain a positive self-view, such that
perceptions of growth might be achieved by derogating ones pre-
cancer status (e.g., reference 12)or by comparing oneself to others
who are worse off. Individuals can seek benefit as an intentional
strategy to cope with mortality threat and illness-related demands
(e.g., coping through positive reappraisal), or they can report ben-
efits that already have accrued through their experience with the
disease.13 In a sample of breast cancer patients who recently had
completed primary medical treatments, Sears etal.10 found that
these constructs had different predictors. Further, actively coping
through positive appraisal of the cancer experience (e.g., I look

for something good in what is happening) predicted perceived
cancer-related growth, as well as improved positive mood and per-
ceived physical health, one year later. In contrast, simply reporting
having found benefit in the cancer experience at study entry did
not predict improved adjustment at one year, leading the authors
to suggest that it is those individuals who make active use of their
perceptions of benefit through cognitive reminders or behavioral
instantiation (e.g., spending more time with close friends) who are
most likely to experience salutary outcomes.
Reports of benefit likely serve distinct motivational functions for
different individuals. For some survivors, reporting cancer-related
benefits might be akin to wishful thinking, whereas for others, cit-
ing benefits might signify important and sustained positive shifts
in cognitions, emotions, or behaviors. Evidence for these distinct
motivational functions comes from two longitudinal studies,
one of women with breast cancer14 and the other of mothers car-
ing for children undergoing stem cell transplantation.15 In both
cases, finding benefit in, or engaging in positive reappraisal of,
the cancer experience predicted improved adjustment over time
for women with high personal resources (i.e., high dispositional
hope or optimism) and declining adjustment for those with lower
personal resources (i.e., personality benefit-finding interac-
tion). Stanton et al.14 also found that women with high hope
who reported coping through positive reappraisal were unlikely
to engage in avoidant coping, whereas women low in hope evi-
denced a positive relation between positive reappraisal coping and
avoidance-oriented coping. Thus, benefit finding might serve an
avoidant function for those with low personal resources and an
approach-oriented function for those with greater resources, with
distinct consequences for adjustment. If expression of the senti-
ment that cancer is the best thing that ever happened to me or
I appreciate every day so much more now represents distinct
motives for different individuals, then researchers might need to
assess potentially moderating variables carefully to elucidate the
nature of the relationship between benefit finding and adjustment.
WHAT CONDITIONS PROMOTE
BENEFITFINDING?
Over the past several decades, researchers and clinicians have
attempted to understand how individuals are able to discover
benefit in the face of experiences that also carry the potential for
disability, psychosocial disruption, and loss of life. Theories of
finding meaning and growth through adversity suggest that life
disruption sufficient to prompt a search for meaning is necessary
for growth to occur (e.g., references 11, 16). Through the search
for meaning and associated cognitive processes, life threat can
prompt enhanced appreciation for life and a commitment to live
according to ones fundamental priorities, considerate reactions
of others can take on special meaning and motivate deepened
relationships, and the recognition that one can surmount major
difficulties can bring a sense of pride and self-regard. The intrap-
ersonal and interpersonal contexts influence the ultimate adaptive
consequences of the process of making meaning in stressful or
traumatic experiences.
In a review of 29 independent, quantitative studies, and seven
additional substudies based on those samples, Stanton and col-
leagues2 examined correlates of finding benefit in the experience of
cancer. Potential correlates included a number of sociodemographic
chapter 85 positive consequences 631
factors, stressor characteristics, personality attributes, social con-
text variables, and coping processes. Concordant with theory,
Stanton etal. concluded that significant cancer impact and personal
engagement are the most consistent precursors of finding benefit.
That is, although the evidence was not entirely consistent and came
primarily from cross-sectional studies, more life disruption and
perceived threat were associated with more perceived growth from
the experience of cancer. Further, intentional engagement with the
experience of cancer, as evidenced through dispositional approach
tendencies and approach-oriented coping strategies, such as
problem-focused coping, active acceptance of the cancer diagnosis,
and intentional positive reappraisal, was related to more perceived
growth. Amid numerous null or inconsistent findings, there also
was some evidence that greater cancer-related benefit finding is
related to younger age (perhaps owing to higher perceived threat
and life disruption in younger adults with cancer), being of ethnic
minority status, higher dispositional optimism and other positive
personality attributes, and greater social support regarding the
cancer experience.
The relations documented by Stanton et al.2 with regard to ben-
efit finding in the cancer experience are similar to those found
in a meta-analysis of 87 cross-sectional studies of benefit finding
across a variety of stressors, including cancer.17 Benefit finding
was associated significantly with objective event severity and sub-
jective threat, coping through positive reappraisal and acceptance,
younger age, ethnic minority status, female gender, optimism,
and religiosity. The one inconsistent association is that the meta-
analysis17 suggested a relation between benefit finding and coping
through denial, whereas most studies reviewed by Stanton et al.2
found no significant relation with avoidance-oriented coping.
Progress is evident in delineating the factors that promote
perceptions of growth through the cancer experience, and most
empirical findings are consistent with theories that finding ben-
efit is catalyzed by high perceived event impact and intentional
engagement with the stressor. A supportive social context and
positive personal attributes also can facilitate finding ben-
efit. Evidence from recent longitudinal research supports these
findings.5,6,18,19
WHAT IS THE ROLE OF BENEFIT FINDING
INADJUSTMENT TO CANCER?
The adaptive consequences of finding benefit in the experience
of cancer have received study. Of course, perceiving growth as a
result of ones experience might be valuable in its own right, rep-
resenting the maintenance or enhancement of a sense of mastery
and meaning in the face of life-threatening disease. Whether
benefit finding bodes well for other domains of adjustment is less
clear. Certainly, notable positive findings exist, such that per-
ceived positive meaning in the cancer experience at one to five
years after diagnosis predicted an increase in positive affect five
years later in a sample of 763 breast cancer patients,7 and find-
ing benefit in the year after surgery predicted lower distress and
depressive symptoms four to seven years later in another sample
of women diagnosed with breast cancer.20
Reviews of the literature suggest a mixed picture, however. The
Stanton etal.2 review revealed mixed evidence that cancer-related
benefit finding is associated with lower distress or more posi-
tive mood. The Helgeson etal.17 meta-analysis of cross-sectional
632 Section XIV survivorship
research on various stressors demonstrated that benefit find-
ing was related significantly to more positive well-being, lower
depressive symptoms, and greater cancer-related intrusive/avoid-
ant thoughts (but not to anxiety, global distress, or quality of life).
Another meta-analysis of 38 cross-sectional studies of the relation
between benefit finding and adjustment, 21 30 of which were stud-
ies of cancer survivors, revealed that finding benefit was associated
significantly with more positive psychological adjustment (e.g.,
positive mood, life satisfaction) and subjective physical health,
as well as lower negative psychological adjustment (e.g., depres-
sive symptoms, distress). Areview that targeted only longitudi-
nal studies of individuals who had experienced serious disease
(including cancer)22 demonstrated inconsistent relations between
benefit finding and psychological adjustment, but somewhat more
consistent evidence of a relationship between finding benefit and
subjective or objective markers of better physical health (see also
reference 23).
How might the mixed evidence for the relations between
cancer-related benefit finding and psychological and physi-
cal health be explained? First, as discussed above, the report of
finding benefit might indicate primarily an avoidance-oriented
motive for some cancer survivors and an approach-oriented
motive for others, with distinct implications for adjustment.24
Second, the majority of relevant studies were cross-sectional, and
longitudinal research might yield different findings. For example,
cancer-related intrusive thoughts might be linked to more ben-
efit finding shortly after diagnosis, but not later in survivorship.
Third, it is likely that the relations of finding benefit with adjust-
ment are conditioned by important contextual factors. Promising
moderators include cancer-related factors (e.g., time elapsed since
cancer diagnosis), intrapersonal attributes (e.g., race/ethnicity),
and characteristics of the interpersonal context. The reviews were
consistent in their conclusion that additional research to identify
moderators of the relation of benefit finding with psychological
and physical health is warranted.
In addition to having a direct relationship with particular adap-
tive outcomes or having effects dependent on contextual factors,
finding benefit in the cancer experience might have additional,
complex relations with physical and psychological health. First,
benefit finding might serve as a mechanism for the relations of
more stable individual difference factors with outcomes. For
example, Tallman, Altmaier, and Garcia 25 found that high opti-
mism before bone marrow transplant predicted benefit finding at
one year after transplant, which in turn predicted lower depres-
sive symptoms and better physical functioning three years after
transplant. Second, finding benefit might serve a stress-buffering
function. For example, in a cross-sectional study, the relation of
post-traumatic stress symptoms with higher depressive symp-
toms and lower quality of life was attenuated in women who
endorsed more post-traumatic growth.26 Third, benefit finding
that is sustained or increases over time might promote adjust-
ment. Schwarzer etal.4 found that finding benefit in cancer was
not associated with well-being at any point in a longitudinal study,
but that an increase in finding benefit from the week before sur-
gery through one year predicted increased well-being in a sample
of patients with various cancers.
The mechanisms through which cancer-related benefit finding
might promote positive outcomes also are receiving study (see
reference 23 for a review). Dunigan, Carr, and Steel, 27 who found
that post-traumatic growth was associated with longer survival
in hepatocellular carcinoma, suggested that finding benefit pro-
motes biological homeostasis through hypothalamic modula-
tion of glucocorticoids (note that the relation was reduced to a
trend when gender was controlled in analyses). This hypothesis
is consistent with the finding of Cruess etal.28 that an increase
in benefit finding after participation in a cognitive behavioral
stress management (CBSM) intervention 29 was associated with
a reduction in cortisol in breast cancer patients; moreover, ben-
efit finding mediated the effect of the intervention on cortisol.
Altered immune function also might result from finding benefit
or meaning. 30 The nature and significance of neuroendocrine
and immune changes associated with finding benefit requires
continued investigation.
Clearly, the relation of benefit finding with adaptive outcomes
is not straightforward. Rather, the impact of finding benefit
in the experience of cancer likely is dependent on a number of
characteristics of the person, the disease context, and the social
milieu. Accordingly, any clinical implications of findings must be
advanced with caution.
CLINICAL IMPLICATIONS OF BENEFIT
FINDING IN CANCER
In the past decade, researchers have examined the effect of psy-
chosocial interventions on benefit finding in cancer and other
stressors. Although not originally designed to promote benefit
finding, Antonis CBSM intervention has been demonstrated to
increase cancer-related benefit finding in trials of women with
breast cancer29,31 and a trial of men with prostate cancer.32 The
development of perceived ability to relax 31 and broader stress
management skills32 mediated the effects of CBSM on benefit
finding. In addition, an intervention designed to enhance com-
munication and dyadic coping skills in women with cancer and
their partners also increased cancer-related benefit finding in both
partners through six months after the intervention, compared to a
psycho-education control group.33 In adults with more advanced
cancers, meaning-centered group therapy can enhance perceived
meaning in life and spiritual well-being.34
Research also has explicitly prompted the consideration of
cancer-related benefits. Stanton and colleagues1 randomly
assigned women who had completed primary treatments for breast
cancer to write over four sessions about their deepest thoughts
and feelings about their experience with breast cancer (EXP), pos-
itive thoughts and feelings about their experience (POS), or the
facts of the experience (CTL). Compared with the CTL condition,
both EXP and POS produced significantly fewer medical appoint-
ments for cancer-related morbidities over the next three months,
and EXP participants reported significantly fewer physical symp-
toms, with a similar trend evident for POS. The writing interven-
tions did not have direct effects on psychological outcomes, but
EXP was more effective in reducing distress for participants low
in cancer-related avoidance, and POS appeared somewhat more
effective for more highly avoidant participants.
Such controlled, experimental evidence promotes confidence
in the results of longitudinal, naturalistic research that finding
benefit in the experience of cancer can carry salutary health con-
sequences. However, few trials are available, and much is left to
learn about whether, when, and how to prompt consideration of

benefits during clinical encounters. Certainly, discussing posi-
tive consequences gleaned during the cancer experience is not
the same as an insistence on positive thinking. A sole focus
on positive thinking, accompanied by a suppression of nega-
tive thoughts and feelings, is clinically contraindicated 35 and is
likely to exact a psychological and physiological toll. Indeed, it
is possible that inducing women to consider the positive con-
sequences of their experience with breast cancer was effective
in part because the trial was conducted after the completion of
primary medical treatments,1 when women likely already had
had considerable time to process and express negative emotions
surrounding cancer. An instruction to generate benefits shortly
after diagnosis might have induced the suppression of negative
emotions, with very different outcomes. It also is important to
note that none of the trials that prompted benefit finding sug-
gested that women should identify any particular benefit, but
rather encouraged self-generation of positive consequences. One
woman wrote, The first time Iwas asked to write about the posi-
tive aspects for 20 minutes, Ithought, Are you kidding?! Then
as Istarted thinking about it Iwas amazed at all of the things
that came to mind!1
The empirical literature on benefit finding has not matured
sufficiently to offer definitive procedural guidance for clinicians.
Certainly, the direct suggestion that one should experience any
specific benefit can be perceived as minimizing the impact of the
cancer experience; however, spontaneous reports of illness-related
benefits offer a potentially useful entre into a cancer patients
efforts to adapt to the disease. Further, a sensitively timed query
about any positive consequences that might have occurred amid
the negative aspects could prompt productive cognitive and emo-
tional processing. Helping individuals make active use of benefits
found, for example, through changing health behaviors, making
the most of time with loved ones, and living according to deeply
held values and priorities, also can be productive. In tandem,
the next decade of basic research and clinical trials promise to
illuminate further what it means to find benefit in the face of
life-threatening disease, the conditions under which finding ben-
efit promotes positive adaptive outcomes, and the place of benefit
finding in clinical interventions for individuals diagnosed with
cancer.
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 CHAPTER86
Changing Health Behaviors
After Treatment
Elizabeth Eakin and Wendy Demark-Wahnefried
A conceptual framework for the care of older adults over the tra-
jectory of the cancer experience has been provided by Rose and
OToole (Figure 86.1).1 This simple yet elegant framework can be
applied to old and young alike. This chapter will focus primarily
on the three final stages of the right-hand pathway associated with
early stage disease, that is, complementary therapy and follow-up,
long-term survivorship, and health maintenance.
Given advances in early detection and treatment, this is the path
that will mark the footsteps of 68% of patients newly diagnosed
with cancer, who will experience a high likelihood of cancer-free
survival of at least five years or beyond.2 Indeed, this is good news,
and we must celebrate the fact that the clear majority of cancer
patients are treated with curative intent. However, the bad news is
that a substantial proportion of these survivors will return to the
point of diagnosis, either via recurrence or the discovery of second
cancers.3,4 In addition, many more will run head-long into other
comorbid conditions, such as cardiovascular disease, diabetes, or
osteoporosis.57
As the number of cancer survivors increase, and more and more
data gather on the late effects associated with cancer and its treat-
ment, the significance of health promotion within this high-risk
population becomes ever more important, not only to improve
quality of life (QOL) and reduce the burden of suffering, but also
in terms of sheer economics.8 For example, taking into account
recent trends of declining incidence, improving survival, and
increasing costs, it is estimated that the cost of cancer care will
increase in the United States to $172.8 billion by 2020, which is
an increase of 39% from 2010.8 Therefore as the number of cancer
survivors increase with each passing year, it is imperative that we
turn our attention to the long-term health issues of cancer survi-
vors and begin to deliver care that prevents adverse sequelae and
that can preserve or improve functional status and overall health;9
we cannot afford otherwise.
Advances in the development of therapeutic agents with fewer
side effects and the institution of survivorship care plans (see
Chapter87) are likely to make a large impact on survivors health
and well-being. Included within this effort, and now receiving
considerable research attention, are the health or lifestyle prac-
tices of cancer survivors. As addressed in previous chapters,
accumulating evidence exists that lifestyle factors and comple-
mentary therapies may make a difference, not only in reducing
the primary risk of cancer (as addressed in Chapters25), but also
in improving QOL and ameliorating symptoms during treatment
(as addressed in Chapters31, 36, and 5861).9 Such factors may be
even more relevant after the flurry of primary treatment ends and
the long-term futures of most survivors begin to unfold, particu-
larly given evidence (largely from the breast cancer arena) of the
pervasive and persistent nature of side effects.10
Data clearly show that cancer survivors are at increased risk
for second cancers;11 thus the lifestyle factors addressed in
Chapters25 become even more important.3 Diet, physical activ-
ity, overweight and obesity, and alcohol and tobacco use are also
well-recognized factors that are associated with prevalent forms of
comorbidity among cancer survivors (i.e., cardiovascular disease
and diabetes); and it is these comorbidities that are often associ-
ated with much higher rates of morbidity and mortality among
cancer survivors than the cancer itself.11 Furthermore, stud-
ies among patients diagnosed with tobacco- or alcohol-induced
cancers show that continued smoking and/or drinking leads
to increased rates of complications and decreased survival.12,13
Data also suggest that physical activity and weight control may
be just as important as chemotherapy for enhancing disease-free
survival.1417
The cancer diagnosis may signal an opportune time or a teach-
able moment for undertaking health behavior change.12 While
some reviews and recent studies suggest that cancer survivors may
begin to adopt healthier lifestyle practices on their own,18 large
population-based studies in the United States and Australia sug-
gest that, for the most part, cancer survivors health behaviors
parallel those of the general populationa population marked
by inactivity; overweight or obesity; suboptimal fruit, vegetable,
and fiber consumption; and high intakes of fat.19,20 These stud-
ies suggest that although many cancer patients report healthful
lifestyle changes after diagnosis, these changes may not general-
ize to all populations of cancer survivors, may be temporary, or
may indicate that even after undertaking behavior change, cancer
survivors behaviors are similar to the general population.9 Given
higher rates of comorbidity among survivors and evidence that
diet, exercise, and tobacco use affect risk for other cancers and
other chronic diseases, these recent data support a tremendous
need for lifestyle interventions that target the vulnerable popula-
tion of cancer survivors.
636 Section XIV survivorship

cancer prevention, as well as those used for the prevention of other

Prevention
prevalent chronic diseases, such as cardiovascular disease and
Risk assessment diabetes.21-24

Screening Weight Management

Early detection It should be noted that weight management is the lead item in
Diagnosis both sets of recommendations. This recommendation takes into
account that although anorexia and cachexia may be of concern
Prognosis - Staging in select subsets of cancer patients (i.e., those diagnosed with
specific gastro-intestinal, respiratory, or head and neck cancers,
te E
La st arly or those diagnosed with later stage disease), for the majority of
ag
ge

e cancer survivors, obesity and overweight are problems that are far
sta

more prevalent.9,2123 Indeed, data suggest that in the two larg-

Recurrence

Treatments Treatments
and procedures and procedures
Palliation Adjuvant therapy
follow-up
End-of-Life Long-term
care survivorship
Bereavement Health
maintenance
Figure86.1 Conceptual framework for care along the cancer continuum.
Modifiedn from Rose JH, OToole EE, Koroukian S, Berger NA. Geriatric oncology
and primary care:promoting partnerships in practice and research. J Am Geriatr Soc.
2009;57(Suppl 2):S235S238.
The potential benefits of physical activity, as well as exercise inter-
ventions targeting cancer survivors, have been covered in a previ-
ous chapter by Courneya, Crawford, and Adams (see Chapter67).
Likewise, complementary therapies and related interventions also
were addressed in other chapters (see Chapters6365). This chap-
ter will address other important lifestyle behaviors in cancer sur-
vivors, that is, diet and weight control, tobacco and alcohol use,
and sun exposure. Given the strength of evidence for interventions
in many of these areas, and the urgent need for their implemen-
tation among growing numbers of cancer survivors, the chapter
will also address issues important to informing their uptake into
practice. These include what is known about the maintenance of
health behavior change following interventions and evidence for
broad-reach intervention delivery.
DIET AND WEIGHT CONTROL
Guidelines that specifically address health behaviors (diet, weight
control, physical activity, and alcohol intake) among cancer sur-
vivors were established by the American Cancer Society (ACS) in
2003,21 and were updated in 200622 and again in 2012.23 In 2007,
the American Institute for Cancer Research (AICR), in collabo-
ration with the World Cancer Fund (WCF), issued very similar
guidelines for cancer survivors.24 Table 86.1 summarizes the ACS
Nutrition and Physical Activity Guidelines for Cancer Survivors,
and the WCF-AICR Recommendations for Cancer Prevention
After Treatment. Because the risk of comorbid disease, includ-
ing second cancers, is a significant concern for cancer survivors,
these guidelines are based heavily upon those used for primary
est segments of cancer survivors, that is, survivors of breast and
prostate cancer, the prevalence of overweight and obesity (body
mass index [BMI] > 24.9) exceeds 70%, whereas the prevalence of
underweight (BMI < 18.5) is nil.25 These data are not surprising,
given that obesity is a well-established risk factor for cancers of
the breast (postmenopausal), colon, kidney (renal cell), esophagus
(adenocarcinoma), pancreas, and endometrium. 5,24,26 Increased
premorbid body weight and/or body weight at the time of diag-
nosis also has been associated with increased mortality (overall
and cancer-specific) for all cancers combined and specifically for
non-Hodgkin lymphoma and multiple myeloma, and cancers of
the breast, esophagus, colon and rectum, cervix, uterus, liver,
gallbladder, stomach, pancreas, prostate, and kidney.17,27 Finally,
additional weight gain is common during or after treatment for a
variety of cancers.2123 Such weight gain has been found to reduce
QOL and exacerbate risk for functional decline, comorbidity, and
perhaps even cancer recurrence and cancer-related death.26 While
studies exploring the relationship between post-diagnosis weight
gain and disease-free survival have been somewhat inconsis-
tent,14,2123 one of the largest studies (n=5204) by Kroenke etal.14
found that breast cancer survivors who experienced increases
in BMI after diagnosis of at least 0.5 units had a significantly
higher relative risk (RR) of recurrence and all-cause mortality.
This accumulating evidence of adverse effects of obesity in cancer
survivors, plus evidence indicating that obesity has negative con-
sequences for overall health and physical function, make weight
management a priority for cancer survivors.26 While the pursuit
of a desirable weight can be postponed until primary treatment is
complete, among patients who are overweight or obese there are
no contraindications to a modest rate of weight loss (no more than
two pounds per week) during treatment, as long as the oncologist
approves and it does not interfere with treatment.2728
With more recent attention to weight control as an important
outcome following cancer treatment, there has been an increas-
ing number of studies that have tested weight-loss interventions
among cancer survivors, the majority targeting breast cancer
survivors, and with two of these studies aimed at endometrial
cancer survivors. 29,30 The evidence on weight loss interven-
tions among breast cancer survivors has been summarized in
a recent systematic review (Reeves MM, Terranova CO, Eakin
EG, Demark-Wahnefried W, Obesity Reviews, in press). Ten
completed randomized trials, four single-arm trials, and five
ongoing trials were identified. Sample sizes ranged from 24
to 102, with half recruiting < 50 participants. Statistically sig-
nificant within-group weight loss was observed in 13 of the 14
Table86.1 Health Behavior Guidelines for Cancer Survivors
American Cancer Society (2012)23,28
Weight Achieve and maintain a healthy weight throughout life:
Be as lean as possible throughout life without being underweight.
Avoid excess weight gain at all ages. For those who are overweight or
obese, losing even a small amount of weight has health benefits and Maintain body weight within the normal range from age 21.
is a good place to start.
Get regular physical activity and limit intake of high-calorie foods
and drinks as keys to help maintain a healthy weight.
Physical activity Be physically active:
Avoid inactivity and return to normal daily activities as soon as
possible following diagnosis.
Adults:Get at least 150 minutes of moderate intensity or 75 minutes
of vigorous intensity activity each week (or a combination of these),
preferably spread throughout the week.
Include strength training exercises at least 2days per week.
Children and teens:Get at least 1 hour of moderate or vigorous intensity
activity each day, with vigorous activity on at least 3days each week.
Limit sedentary behavior such as sitting, lying down, watching TV,
and other forms of screen-based entertainment.
Doing some physical activity above usual activities, no matter what
ones level of activity, can have many health benefits.
Dietary pattern Eat a healthy diet, with an emphasis on plant foods:
Choose foods and drinks in amounts that help you get to and
maintain a healthy weight.
Limit how much processed meat and red meat you eat.
Eat at least 2 cups of vegetables and fruits each day.
Choose whole grains instead of refined grain products.
Alcohol If you drink alcohol, limit your intake: Limit alcoholic drinks:
Drink no more than 1 drink per day for women or 2 per day for men. If alcoholic drinks are consumed, limit consumption to no more than
Preservation,
processing,
preparation
Supplements Dont use supplements to protect against cancer.
Recommendations Public, private, and community organizations should work together
for community at national, state, and local levels to apply policy and environmental
action changes that:
Increase access to affordable, healthy foods in communities, places
of work, and schools, and decrease access to and marketing of foods
and drinks of low nutritional value, particularly to youth.
Provide safe, enjoyable, and accessible environments for physical
activity in schools and workplaces, and for transportation and
recreation in communities.
World Cancer Fund-American Institute for Cancer Research (2014)24
Be as lean as possible within the normal range of body weight:
Ensure that body weight through childhood and adolescent growth
projects towards the lower end of the normal BMI range at age 21.
Avoid weight gain and increases in waist circumference throughout
adulthood.
Be physically active as part of everyday life:
Be moderately physically active, equivalent to brisk walking, for at least
30 minutes every day.
As fitness improves, aim for 60 minutes or more of moderate, or for 30
minutes or more of vigorous physical activity every day.
Limit sedentary habits such as watching television.
Limit consumption of energy-dense foods and avoid sugary drinks:
Consume energy-dense foods sparingly.
Avoid sugary drinks.
Consume fast foods sparingly, if at all.
Eat mostly foods of plant origin:
Eat at least five portions/servings (at least 400 g or 14 oz) of a variety of
non-starchy vegetables and of fruits every day.
Eat relatively unprocessed cereals (grains) and/or pulses (legumes) with
every meal.
Limit refined starchy foods.
People who consume starchy roots or tubers as staples also need to ensure
intake of sufficient non-starchy vegetables, fruits, and pulses (legumes).
Limit intake of red meat and avoid processed meat:
People who eat red meat to consume less than 500 g (18 oz) a week,
very little if any to be processed.
2drinks a day for men and 1 drink a day for women.
Limit consumption of salt:
Avoid salt-preserved, salted, or salty foods; preserve foods without
using salt.
Limit consumption of processed foods with added salt to ensure an
intake of less than 6 g (2.4 g sodium) a day.
Avoid moldy cereals (grains) or pulses (legumes):
Do not eat moldy cereals (grains) or pulses (legumes).
Aim to meet nutritional needs through dietalone:
Dietary supplements are not recommended for cancer prevention.
638 Section XIV survivorship
trials, with six randomized and two single-arm trials observing
mean weight loss 5%. Clinical biomarkers and psychosocial
and patient-reported outcomes were measured in a small num-
ber of studies. Evidence of an impact of weight loss on clinical
biomarkers was mixed, particularly for biomarkers potentially
related to cancer progression; however, most studies were under-
powered in relation to this examination. The same was true for
psychosocial and patient-reported outcomes. Importantly, no
serious adverse events were reported. There was some evidence to
suggest that longer interventions (> 6months) achieved greater
weight loss. Three studies that targeted ethnic breast cancer
survivors also achieved mean weight losses < 5%, suggesting
that more research is needed in developing interventions that
are effective among cultural and ethnic subgroups. Despite the
importance of long-term weight loss maintenance, only two of
the 14 randomized and single-arm trials assessed whether weight
losses (and changes in other outcomes) were maintained after the
intervention ceased, and follow-up for both were six months or
less. None reported on cost-effectiveness. The review concluded
that weight loss is feasible to achieve and safe in women follow-
ing treatment for breast cancer. It was recommended that future
studies should assess (and be powered for) a range of biomarker
and patient-reported outcomes, and be designed to inform trans-
lation into practice (i.e., addressing longer-term maintenance of
outcomes and cost-effectiveness).
In addition, given evidence that sarcopenic obesity (gain of adi-
pose tissue at the expense of lean body mass) is a documented side
effect of both chemotherapy and hormonal therapy, 31,32 exercise,
especially resistance exercise, may be especially important for
cancer survivors undertaking weight loss since it is considered
the cornerstone of treatment for this condition (see Chapter67
for further detail). Until more is known, guidelines established for
weight management in the general population should be applied
to cancer survivors, and should include not only dietary and exer-
cise components, but also behavior therapy.2123,33
Dietary Pattern
The choice of foods and their proportions within an overall
diet (dietary pattern) may be more important than absolute
amounts. 2224,28 Given that cancer survivors are at high risk
for other chronic diseases, guidelines suggest prudent diets that
rely heavily on unrefined plant foods such as fruits, vegetables,
and whole grains, and which contain limited amounts of fat,
simple sugars, and red or processed meats. 5,2124 Observational
studies of breast cancer survivors (n=2619) and colorectal can-
cer survivors (n=1009) within the Nurses Health Study cohort the cardio-protective benefit of light alcohol consumption,
suggest that as compared to those who reported a Western-type
diet (e.g., high proportional intakes of meat, refined grains,
high-fat dairy products, and desserts), those who reported a
prudent diet (e.g., high proportional intakes of fruits, vegeta-
bles, whole grains, and low-fat dairy products) had significantly
better outcomes (e.g., improved overall survival and reduced
rates of colorectal recurrence and mortality, respectively). 34,35
RENEW (Reach-out to ENhancE Wellness), a randomized con-
trolled trial among 641 overweight elderly breast, colorectal,
and prostate cancer survivors found significantly improved
physical functioning with a multicomponent intervention that
promoted improvements in diet quality and physical activity
with concomitant weight loss. 36
In contrast, no differences were observed in either disease-free
or overall survival in the recently completed Womens Healthy
Eating and Living (WHEL) trial, which tested a low-fat, high-fiber,
and high fruit and vegetable (i.e., three fruit servings, five veg-
etable servings plus 16 oz. of vegetable juice per day) diet against
usual care among 3088 pre- and postmenopausal women followed
over seven years. 37 Null findings have been attributed to high
baseline fruit and vegetable intakes in both study arms (mean of
7.4 servings/day), as well as an absence of weight loss, despite the
low-energy density diet.38 Indeed, findings of WHEL differ mark-
edly from the Womens Intervention Nutrition Study (WINS), in
which the dietary intervention was solely focused on dietary fat
restriction (< 15% of total energy) and tested against a healthy
diet.39 In this trial of 2437 postmenopausal women followed for
five years, a significantly reduced risk of recurrence was observed
(Hazards Ratio:0.76; 95% CI:0.60, 0.98) among women assigned
to the low-fat diet, an effect that was even stronger among par-
ticipants with estrogen-receptor negative disease. These findings,
however, may have been confounded by the six-pound weight loss
observed with the low-fat diet over the course of the study period
(data that reinforce the importance of weight control as a key life-
style factor in cancer survivors).
Thus, in summary, dietary pattern may be important for QOL
and the prevention of various comorbid conditions among sur-
vivors. Furthermore, diet pattern also may play a role in energy
regulation and weight maintenance, which appears to be a key
issue, not only for survivors, but also for the population at large
(pun intended).40 Other recommendations that pertain to the
avoidance of red and processed meats, as well as limiting the con-
sumption of salty foods, are based more on the prevention of select
cancers (i.e., colorectal and other aero-digestive cancers),2124 for
which survivors may be at greater risk given their increased sus-
ceptibility for second primaries. 3,11
Alcohol Use
National data from the United States and Australia suggest that
while moderate-to-heavy drinking is noted more frequently
among select groups of cancer survivors (i.e., survivors of head,
neck, lung, and prostate cancers), alcohol consumption among
cancer survivors overall is similar to that of the general popu-
lation.19,20 Furthermore, alcohol use diminishes significantly
with age, and risky use (> 2 drinks per day for men and > 1
drink/day in women) is noted among only 4.1% of cancer sur-
vivors who are age 65 and older.19 The low prevalence of risky
drinking among the majority of cancer survivors, along with
forms the basis of the recommendations established by both
the ACS and the WCF/AICR. 2224 However, growing research
evidence suggests that there is no safe level of consumption in
relation to the risk of most cancers, with regular alcohol use
at low (guideline concordant) levels associated with increased
cancer risk.41,42 Continued alcohol use is strongly discouraged
among survivors of renal and head and neck cancers due to sig-
nificantly higher rates of treatment complications, comorbidity,
and second cancers.13 The evidence for the risks of alcohol use
among breast cancer survivors is less clear, 22,23 with some stud-
ies suggesting that alcohol confers a protective effect on overall
survival and subsequent ovarian cancer43 and others finding an
increased risk of contralateral disease and disease-specific and

overall mortality.44 However, alcohol is irrefutably associated
with increased primary risk of breast cancer in a population
where risk is already high.
SMOKING CESSATION
Nearly one-third of all cancers are caused by smoking;45 thus
there is a high likelihood of tobacco use among survivors, espe-
cially those who have been diagnosed with smoking-related
malignancies, that is, lung, head and neck, cervix, bladder, kid-
ney, pancreas, and myeloid leukemia. Recent estimates of current
smoking rates among adult survivors of cancer are around 15%;46
between 46% and 75% of adult cancer survivors were smoking at
the time of diagnosis,47 and rates of patients who were actively
smoking at the time of their diagnosis quitting after diagnosis are
estimated at less than 50%.12 Persistent tobacco use after diag-
nosis is associated with poorer outcomes, including increased
complications of treatment, progressive disease, second prima-
ries, and increased comorbidity.12 Thus, while smoking cessation
plays a substantial role in prevention and primary care, this need
is heightened among cancer survivors,12 and may be even more
critical among survivors of heritable cancers who may be partic-
ularly sensitive to the carcinogenic effects of tobacco.48 Although
the cancer diagnosis, especially if it is a tobacco-related cancer,
prompts many patients to stop smoking,12 these early successes
are often short-lived, as evidenced by substantial rates of relapse.12
This is unsurprising given that most institutions fail to offer their
survivors smoking prevention or cessation programs, and many
even lack a referral system,12 and that only 55% of survivors of
childhood cancer who smoked reported receiving advice to quit
smoking from their regular healthcare provider, and only 36%
reported discussions about pharmacotherapy.49 Recent data from
the National Health Interview Survey also suggest that current
smoking rates may be especially high in younger cancer survi-
vors (ages 1840) compared to the general population, as well as
among survivors of lung, head and neck, and cervical cancers,
all of which are known to have an association with smoking and
cancer risk.46
Given evidence that combined interventions that utilize behav-
ioral counseling along with pharmacotherapy are effective,
definitive guidelines exist for providing care as it relates to smok-
ing cessation. The 5-A approach endorsed by the US Preventive
Services Task Force provides a concrete framework for healthcare
providers to deliver appropriate care regarding smoking cessation,
and is a featured element within the report From Cancer Patient
to Cancer Survivor:Lost in Transition released by the Institute of
Medicine (IOM).5 Despite this extant framework, the barriers to
long-standing smoking cessation success are substantial, and find-
ings from intervention trials have been mixed. The IOM report
provides a solid overview of studies conducted until 2005 and
notes the significance of smoking cessation within the survivor
population and the numerous barriers that exist.5 Since this report,
Emmons etal. evaluated a web-based smoking cessation interven-
tion targeting adult childhood cancer survivors that was found
to be feasible and effective.50 This recent positive trial not only
is important for its contribution to smoking cessation research,
but also paves the way more generally for future health promotion
programs by testing innovative strategies that are well-accepted
and more readily disseminable to survivor populations who often
Chapter86 changing health behaviors 639
are hard to reach. As with other lifestyle interventions, more
research is necessary to determine approaches that are optimally
effective and that promote permanent smoking cessation in what
is likely to be a particularly resistant population. Furthermore,
since smokers are likely to practice other unhealthful behaviors
(i.e., sedentary behavior, high red meat consumption, and exces-
sive alcohol use), they also may be prime candidates for multiple
risk factor interventions.5 As noted in the IOM report, as well as in
other studies, smokers may benefit especially from interventions
that incorporate social or familial support.5
SUN-PROTECTIVE BEHAVIORS AND SKIN
CANCER SCREENING
While recent findings suggest that vitamin D and modest sunlight
exposure may be protective, not only for the primary risk of some
solid tumors, but also for survival of select cancers, 51 it also is
well known that for many cancer survivors, especially those who
received loco-regional radiotherapy and hematopoietic cell trans-
plantation, the risk for melanoma and basal cell skin cancers is
high and may be exacerbated by exposure to the sun.52,53 Thus, at
a minimum, all cancer survivors should be closely monitored for
skin cancers, and sun-protective behaviors should be endorsed for
those who are known to be at increased risk for melanoma (survi-
vors of melanoma and survivors who received loco-regional radio-
therapy and hematopoietic stem cell radiation). Observational
studies have shown mixed evidence for skin examination behav-
iors among cancer survivors. In an international study of over
8000 adults with varying degrees of melanoma risk, those with
a history of melanoma were more likely to engage in skin checks
than those without.54 In an Australian study comparing a mixed
group of nearly 1000 cancer survivors to a matched compari-
son group without a cancer history, cancer survivors were more
likely to have regular skin checks than those without a cancer
diagnosis.20 In contrast, other studies have found that melanoma
survivors exhibit only moderate adherence to skin examination
guidelines, suggesting a need for interventions. 55,56 McLoone
et al., in their recent systematic review of psycho-educational
interventions for melanoma survivors, identified eight interven-
tion trials focused on education and the improvement of skin
self-examination skills (most were delivered via group sessions,
although some emphasized learning with a partner who could
assist with skin examination), four studies targeted psychologi-
cal support, and four evaluated interventions that had both an
educational and psychological focus.57 Overall, the educational
interventions increased frequency of skin self-examination in
melanoma survivors, although results surrounding accuracy and
thoroughness were rarely reported; participation in psychological
interventions was associated with a decrease in melanoma recur-
rence rates.57
INFORMING THE TRANSLATION INTO
PRACTICE OF EFFECTIVE HEALTH
BEHAVIOR CHANGE INTERVENTIONS
AMONG CANCER SURVIVORS
As reviewed in this chapter and elsewhere (Chapter67 on exer-
cise interventions), there is now considerable evidence of effective
640 Section XIV survivorship
interventions to support health behavior change among cancer
survivors. This is not to say that there are not gapsmost of the
research has been conducted in breast cancer; there are more stud-
ies with exercise as the target than those addressing other health
behaviors; there is a pressing need to address health behavior
change among underserved and culturally diverse cancer survivor
subgroups. However, as in most fields, the largest gap is the trans-
lation of effective interventions into clinical practice. While the
reasons for this are myriad, it has been argued by many that the
research to practice gap is in large part due to the lack of research
designed to inform translation.58 Glasgow and colleagues, in put-
ting forward their RE-AIM Evaluation Framework, 59 have argued
that there is a need for more pragmatic health behavior interven-
tion research that, while rigorously conducted, also addresses
issues that are important to informing policy and healthcare
decision-makers charged with resource allocation.60 As seen in
Table 86.2, the framework has an emphasis on factors related to
external validity, or the generalizability of intervention evidence,
particularly with its focus on who is being reached, both at the
patient level (Reach) and the clinic or hospital level (Adoption),
documentation of the fidelity of intervention delivery along with
evaluation of cost-effectiveness (Implementation), and mainte-
nance of intervention effects at both the patient and clinic or hos-
pital levels (Maintenance). Below, the focus is on such pragmatic
issues important to informing the implementation and uptake
of effective health behavior change interventions among cancer
survivors.
Broad-Reach Health Behavior Interventions
As reviewed by Stull etal.,61 most of the reported health behav-
ior interventions among cancer survivors have been conducted
in self-referred or clinic-recruited samples and have utilized
clinic-based interventions. With the reach for home-based inter-
ventions being notably greater than for clinic-based programs,
over the past decade, there has been a growing number of health
behavior change studies among cancer survivors employing
broad-reach or distance-based intervention delivery modalities.
In relation to the targets of physical activity, diet, and weight
control, a review of this evidence has recently been conducted by
Goode and colleagues (Goode A, Lawler S, Brakenridge C, Reeves
M, Eakin E, under review). Among the 26 randomized controlled
intervention trials included in the review, involving 7279 cancer
survivors, 20 used the telephone as the primary delivery modal-
ity, three were web-based (one of which was a Facebook interven-
tion), two were delivered via mailed print materials, and one study
included a multimodal arm using telephone and print to an equal
degree. While most studies included breast cancer survivors (i.e.,
19 of 26), colorectal, prostate, gynecological, and testicular can-
cer survivors were represented in six, four, two, and one study,
respectively. Most studies targeted one behavior:physical activity
(n=16), with a further two targeting dietary change and eight
targeting physical activity and diet. Overall, across all delivery
modalities, 22 of 31 comparisons (71%) reported statistically sig-
nificant improvements at end of intervention for physical activ-
ity and/or dietary behavior outcomes and/or weight loss. Thus
the evidence for broad-reach health behavior intervention deliv-
ery among cancer survivors, particularly interventions targeting
physical activity and diet/weight loss, is reasonably strong, and
pragmatic trials evaluating factors influencing uptake into prac-
tice, as well as outcomes that can be achieved when such interven-
tions are taken up into clinical practice, are needed. Print, web,
and mobile short messaging and application-based interventions
may also be more cost-effective to deliver on a wide scale, but
this remains to be evaluated, as few studies have evaluated these
modalities, and cost-effectiveness was reported in only one trial
included in the review.
Maintaining Health Behavior Change Over
the Long Term
Maintenance of health behavior change is an important goal of
interventions among cancer survivors, but one for which we have
much less evidence. This is primarily because, as in the broader
health behavior change intervention literature, the majority of tri-
als do not include longer-term follow-ups.62 Spark and colleagues
reviewed the evidence for maintenance of physical activity and/
or dietary change following interventions in breast cancer survi-
vors, the survivor area in which there is the largest health behav-
ior intervention evidence base.63 Of the 63 trials included in the
review and reporting on end-of-intervention outcomes, 10 (16%)
trials assessed post-intervention maintenance of outcomes. Of the
10 trials that assessed post-intervention maintenance of outcomes,
four trials (40%) achieved successful maintenance of behavior
change for at least 50% of outcomes; three of these trials assessed
a physical activity intervention, and one trial assessed a combined
physical activity and dietary intervention (only diet behavior suc-
cessfully maintained). Comparing the trials that reported success-
ful maintenance and those that did not, there were few differences
in intervention duration (median 2.5 vs. 3.5months), length of
post-intervention follow-up period (median 5 vs. 5 months), reten-
tion rate from baseline to post-intervention follow-up (median
90% vs. 91%), use of face-to-face contact as the primary delivery
modality (3/4 vs. 3/6), home-based intervention delivery context
(2/4 vs. 3/6), or trials having minimum weekly intervention deliv-
ery contacts (2/4 vs. 4/6). Thus future health behavior intervention
trials in cancer survivors would do well to include the evaluation
of maintenance outcomes (i.e., whether intervention effects are
sustained > 6months following the end of intervention), as well
as elucidating intervention elements and behavior change strate-
gies that might be differentially related to behavior change versus
behavior maintenance.64,65
Translating Effective Interventions Into Clinical
Practice
Given the strength of the evidence for many health behavior
interventions among cancer survivors, and the importance of
healthy lifestyles to cancer rehabilitation and the maintenance
of long-term good health, there have been numerous calls for the
uptake of such interventions into clinical practice.66,67 To guide
such efforts, the American Association of Clinical Oncology
is developing a practitioner toolkit due to be released in 2014.
Barriers to lack of evidence translation in the cancer arena
are complex, and a full explication is beyond the scope of this
chapter. Such barriers, along with constructive recommenda-
tions, have been summarized in a recent Institute of Medicine
report, Delivering High-Quality Cancer Care.68 Here, the focus
is on a number of exemplar studies that have taken steps along

Table86.2 The RE-AIM Evaluation Framework
Reach Percent and representativeness of the intended target
audience participating in the intervention
Effectiveness Impact of the intervention on primary and secondary
outcomes, and unintended consequences/adverse
events
Adoption Percent and representativeness of the target staff,
settings, or institutions taking up the intervention
Implementation Evaluation of whether the intervention was delivered
per protocol; documentation of any adaptations made
and reporting of intervention costs
Maintenance Impact of intervention on primary and secondary
outcomes >6months following the end of intervention
(patient level); documentation of continued
intervention implementation at the settings level
Note:Systematic collection of quantitative data for each indicator is needed to facilitate
rigorous evaluation, and qualitative methods (e.g., patient and clinician interviews) are
recommended to complement this. More detail on the framework, related tools, and
publications is available at www.re-aim.org.
the translational continuum. These include studies that have
recruited cancer survivors using population-based recruitment
strategies (i.e., cancer registries) and studies that have engaged
clinical (non-research) staff in intervention delivery. In the
RENEW trial, Morey and colleagues evaluated a telephone and
tailored print material delivered intervention targeting diet and
physical activity among older, overweight breast, prostate, and
colorectal cancer survivors, an intervention that was found to be
effective and that led to durable behavior change and weight loss
at two-year follow-up.36,69 The majority of trial participants were
recruited via the North Carolina Central Cancer Registry. Despite
this, as is the case in most health promotion trials, the majority
of participants were white and college educated. Compared to
non-respondents, participants were more likely to be younger,
female, not to have colorectal cancer, and closer to their cancer
diagnosis. Nonetheless, cancer registry-based recruitment pres-
ents as one of the best options for broad-reaching recruitment of
cancer survivors, with the option for future trials to oversample
those less well represented. In two linked, concurrent trials, Hayes
and Eakin evaluated an exercise intervention targeting urban70
and regional/rural71 women with breast cancer in which the inter-
vention was delivered by exercise physiology students. While they
were trained and closely monitored as part of the trial protocol,
they were not research staff as such, and thus they were similar to
the type of clinical staff who might deliver such an intervention
were it integrated into cancer clinical care. Unpublished qualita-
tive findings from this trial indicated very high satisfaction levels
among both participants and exercise physiologists. This, coupled
with improvements in many of the trial outcomes examined,70,71
suggest that the exercise intervention could feasibly and effectively
be integrated as part of the usual role of exercise physiologists.
Finally, in Australia, Eakin and Hayes are conducting a transla-
tional study in collaboration with four state-based, not-for-profit
cancer councils in which they will train cancer helpline nurses
to implement and evaluate a telephone-delivered healthy lifestyle
intervention for cancer survivors. This study was funded by the
Chapter86 changing health behaviors 641
Australian National Health and Medical Research Council and
will be conducted from 20142018.
Preferences, Barriers, and Other Considerations in
Delivering Lifestyle Interventions to Cancer Survivors
While cancer survivors generally have high levels of interest
in lifestyle interventions, 61 they may have special needs (i.e.,
fatigue, incontinence, lymphedema, food intolerances or diges-
tive disorders, long-term addictions to tobacco or alcohol, etc.)
that must be considered if attempts to promote healthful lifestyle
practices are to succeed.61 Timing of interventions also may be
of critical importance, since readiness to pursue various lifestyle
changes may wax and wane along the survivorship continuum.
Findings from a survey study of 978 breast and prostate cancer
survivors suggest that while most survivors prefer lifestyle inter-
ventions that are initiated at the time of diagnosis or soon there-
after, interventions offered anytime also garner high levels of
interest.25
The recommendation of the healthcare provider is a critical
first step in motivating patients to consider lifestyle change. Jones
et al.72 found that the oncologists recommendation directly
influenced perceived behavioral control and was associated with
increased physical activity in a randomized controlled trial of
450 breast cancer survivors. Unfortunately, data suggest that only
a minority of oncology care physicians appear to offer guidance
regarding healthful lifestyle change, and report barriers, such
as competing treatment or health concerns, time constraints, or
uncertainty regarding the delivery of appropriate health behavior
messages. 25,73 Therefore, strategies are needed to efficiently and
effectively bring to bear the motivational power of the physician.
SUMMARY
As the number of cancer survivors continues to grow worldwide,
so too does the need for effective health promotion interventions.
While there is now a considerable body of research evidence on
such interventions, more research is needed to increase the likeli-
hood that they are taken up as part of the delivery of high-quality
cancer care. This includes (1)the need for pragmatic trials that
address issues of the feasibility of intervention implementation and
costs important to informing resource allocation; (2)evaluation
of longer-term (maintenance) outcomes; (3)exploration of newer
intervention delivery technologies (e.g., mobile phone short mes-
saging and application-based) with the potential for cost-effective,
broad population reach; (4) extending the research agenda to
include cancer populations that are currently underserved, and/
or most in need (i.e., survivors diagnosed with underrepresented
cancers, culturally and linguistically diverse survivors, and the
elderly), as well as to extend interventions to related survivorship
populations (i.e., caretakers or other family members).
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ods, measures, and models to facilitate research translation. Health
Educ Behav. 2013;40(3):257265.
61. Stull VB, Snyder DC, Demark-Wahnefried W. Lifestyle interventions
in cancer survivors:designing programs that meet the needs of this
vulnerable and growing population. J Nutr. 2007;137:243S248S.
62. Fjeldsoe B, Neuhaus M, Winkler E, Eakin E. Systematic review of
maintenance of behavior change following physical activity and
dietary interventions. Health Psychol. 2011;30(1):99109.
63. Spark LC, Reeves MM, Fjeldsoe BS, Eakin EG. Physical activity
and/or dietary interventions in breast cancer survivors:a sys-
tematic review of the maintenance of outcomes. J Cancer Surviv.
2013;7(1):7482.
6 4. Michie S, Ashford S, Sniehotta FF, Dombrowski SU, Bishop A, French
DP. A refined taxonomy of behaviour change techniques to help peo-
ple change their physical activity and healthy eating behaviours:the
CALO-RE taxonomy. Psychol Health. 2011;26(11):14791498.
65. Rothman AJ, Sheeran P, Wood W. Reflective and automatic processes
in the initiation and maintenance of dietary change. Ann Behav Med.
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66. Hayes SC, Johansson K, Alfano CM, Schmitz K. Exercise for breast
cancer survivors:bridging the gap between evidence and practice.
Transl Behav Med. 2011;1(4):539544.
67. Parsons JK. Prostate cancer and the therapeutic benefits of structured
exercise. J Clin Oncol. 2014;32(4):271272.
68. National Research Council. Delivering High-Quality Cancer
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DC:The National Academies Press, 2013.
69. Demark-Wahnefried W, Morey MC, Sloane R, etal. Reach out to
enhance wellness home-based diet-exercise intervention promotes
reproducible and sustainable long-term improvements in health
behaviors, body weight, and physical functioning in older, over-
weight/obese cancer survivors. J Clin Oncol. 2012;30(19):23542361.
70. Hayes SC, Rye S, Disipio T, etal. Exercise for Health:a random-
ized, controlled trial evaluating the impact of a pragmatic, trans-
lational exercise intervention on the quality of life, function and
treatment-related side effects following breast cancer. Breast Cancer
Res Treat. 2013;137(1):175186.
71. Eakin EG, Lawler SP, Winkler EA, Hayes SC. A randomized trial of
a telephone-delivered exercise intervention for non-urban dwelling
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72. Jones LW, Courneya KS, Fairey AS, Mackey JR. Effects of an oncolo-
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 CHAPTER 87
Implementing the
Survivorship Care Plan
A Strategy for Improving the Quality
of Care for Cancer Survivors
Erin E.Hahn and Patricia A.Ganz
INTRODUCTION AND BACKGROUND
Looming before us is a major expansion of the number of indi-
viduals diagnosed with cancer, simply by virtue of the aging of
the population and the high incidence of cancer as part of the
aging process. As of 2012, there are approximately 13.7million
cancer survivors in the United States alone, and this will grow to
an estimated 18million by 2022.1 Maintaining the quality of care
for these new cancer survivors will be challenged by an antici-
pated shortage of health professionalsmedical oncologists and
nursesto care for the increased number of newly diagnosed and
surviving cancer patients.2 Although the National Coalition for
Cancer Survivorship and the National Cancer Institutes Office
of Cancer Survivorship define survivorship as beginning at the
time of diagnosis and extending through death, a 2006 Institute
of Medicine (IOM) report on adult cancer survivors (described
below) focused on the post-treatment phase of the cancer survi-
vorship continuum.3 This phase was described as needing specific
attention, especially with regard to coordination and quality of
care. Thus, in this chapter, we focus on post-treatment cancer sur-
vivors, and the survivorship care plan.
Over the past decade, the IOM has been engaged in a concerted
effort to examine the quality of healthcare in the United States,
and to identify critical issues that are central to improving the
delivery of healthcare to the population. The IOM definition of
quality is the degree to which health services for individuals and
populations increase the likelihood of desired outcomes and are
consistent with current professional knowledge.4 In its investiga-
tions of quality of care, various IOM committees have identified
overuse, misuse, and underuse of healthcare services, as well as
poor coordination of care, especially for those individuals with
chronic illness. In particular, one of the first IOM investigations
of quality of care focused on the disparities in cancer care service
delivery in the 1999 report Ensuring Quality Cancer Care, 5 in
which a wide gulf was found between ideal cancer care and that
received by most Americans. Subsequently, the IOM Committee
on Quality of Health Care in America issued two key reports, To
Err Is Human:Building a Safer Health System6 and Crossing the
Quality Chasm:ANew Health System for the 21st Century,7 which
laid the foundation and created the vision for the transformation
that is necessary to improve the quality of healthcare. The former
high-profile report brought to public attention the high human and
fiscal cost of medical errors and the critical issue of patient safety,
while the latter identified six key dimensions of quality healthcare
(safety, effectiveness, patient centered, timely, efficient, equitable)
that should be the focus of improvement efforts within the health-
care system. Canada, Australia, and many European nations have
developed a similar focus on improving healthcare quality.
With this background in mind, in 2004 the National Cancer
Policy Board and the IOM established a committee on cancer sur-
vivorship to examine issues related to improving care and qual-
ity of life. 3 Early in its deliberations, the committee decided to
focus its efforts on describing the quality of care needs for patients
with cancer who were beyond the acute phase of treatment and
were living with cancerand its aftermathas a chronic dis-
ease. The resulting IOM report, From Cancer Patient to Cancer
Survivor: Lost in Transition, outlines the key issues facing can-
cer survivors and makes concrete recommendations as to how
to address these problems. Figure 87.1 describes the cancer care
trajectory and highlights the enlarging time/phase/place in which
patients live free of cancer, but often with burdens of long-term
and late effects. Some of these issues are highlighted in the 2013
IOM update on quality cancer care, Delivering High-Quality
Cancer Care:Charting a New Course for a System in Crisis.8 The
report stresses the importance of engaged and informed patients
as part of high-quality cancer care, and features this as the lead-
ing recommendation of the report. This report concludes that
despite advances made in cancer detection and treatment, cancer
care is often not patient-centered, is poorly coordinated, and is not
always evidenced-based.
Why is cancer survivor care special? Shouldnt coordination
of care between specialist and generalists be expected? Cancer
patients often require treatment by multiple specialists (surgeons,
radiation oncologists, medical oncologists) due to the use of

Cancer care trajectory
Start here
Treatment with
intent to cure
Diagnosis and
staging
Palliative
treatment
Death
Figure87.1 The cancer treatment trajectory with special identification of the post-treatment survivorship care phase.
Source:Institute of Medicine, 2005.
multimodal therapies and the frequent use of organ-sparing treat-
ments. Chemotherapy administration may require both inpatient
and outpatient visits, and radiation therapy may not be given in
the same facility where surgery and chemotherapy are received.
As a result, there is seldom a single integrated medical record,
and there may be limited formal (written) communication among
the specialists. Primary care providers are often not included in
the management of the patient during this time, and it may be
months to years after the completion of treatment that the patient
returns for regular check-ups with the primary care provider. In
addition, patients may become so focused on the cancer and the
potential risk of its recurrence that they may neglect other aspects
of their health and have limited follow-up with their regular pro-
vider. Adding to this situation is the failure of the oncology care
system to provide education and guidance to patients at the end of
active cancer treatmentsomething that is very effective at diag-
nosis and during treatmentand as a result, the patient often feels
lost in transition. Although treatments may be completed, often
patients are left with many physical symptoms, which for the most
part gradually resolve. Oncology specialists are not always able
to predict the time course of recovery, and many patients need a
great deal of psychological support during this timesomething
that is not always forthcoming. Thus, it is the intensity, complex-
ity, and length of cancer treatment that magnify the need for coor-
dination of care during the phase of extended survival following
cancer treatment.
Cancer survivors face some unique challenges. In the short
term, many survivors need to have an understanding of what
treatments they received and what kind of follow-up is necessary.
This is for their own information, so that they can understand
how they can recover effectively, but also so that they can tell oth-
ers (family, friends, employer, other health professionals) what to
chapter 87 implementing the survivorship care plan 645
Cancer-free
survival
Recurrence/
Second cancer
Managed
chronic or
intermittent
disease
Survivorship care
Treatment failure
IOM, 2005
expect. Often, they have put many activities on hold and they are
looking forward to resuming a normal life. They need guidance
during this early post-treatment time, which is often lacking in
the current healthcare delivery system. They are also eager to have
a better understanding of whether there are any long-term effects
of the treatments that need monitoring (e.g., cardiac or pulmo-
nary toxicity, second cancers, etc.) and whether other specialists
are required. There is a tendency to worry about every ache and
pain, and during this time, many scans and tests are likely to be
done to look for cancer recurrence, and many additional special-
ists may be consulted. There are guidelines for post-treatment care
and surveillance available from the American Society of Clinical
Oncology and the National Comprehensive Cancer Network for
some cancer types (breast, colorectal), but there is evidence that
there is suboptimal uptake of the guideline recommendations.
Some European nations, such as Italy, Denmark, and Sweden,
are building survivorship programs into existing publicly funded
rehabilitation programs. However, even these programs can have
poor uptake.9
There are some special populations that are worthy of men-
tion, as their care coordination needs are more substantial. These
include the adult survivors of childhood cancer, who often suffer
from an increased number of chronic conditions, as well as a sub-
stantial risk for second malignancies.10,11 Bone marrow transplant
patients (both children and adults) also sustain considerable tox-
icities from the conditioning regimens and risk for graft versus
host disease. There are high rates of physical and psychological
complications in this patient population.12,13 Finally, older indi-
viduals make up the majority of cancer patients and survivors,
and in the context of their follow-up care, comorbid conditions
may add to the specific toxicities of cancer treatment, especially
cardiac, pulmonary, and renal toxicities.
646 Section XIV survivorship

As can be seen, there are many challenges associated with ensur-

Box 87.1 Example of Treatment Summary Content
ing quality care for cancer survivors. One of the proposed first steps
in accomplishing this is the widespread implementation of treat-
Name:
ment summaries and survivorship care planning. This key recom-
mendation of the IOM report has been embraced by a number of Date of birth:
leading organizations, including the American Society of Clinical Current age:
Oncology (ASCO) and the Commission on Cancer, the cancer pro-
Cancer diagnosis
gram accreditation arm of the American College of Surgeons, which
has included survivorship care planning in the 2014 accreditation Date of tissue diagnosis:
standards. In addition, survivorship care plans are included as a Age at diagnosis:
Tier 1 consensus element in the Essential Elements of Survivorship
Care.14 Internationally, there are currently targeted efforts to develop Cancer detection:
survivorship care programs that are integrated into existing health- Stage of cancer:
care delivery systems, such as the National Cancer Survivorship
Site of cancer:
Vision, developed in 2008 in the United Kingdom, and developing
cancer rehabilitation programs.15 The treatment summary and care Pathological findings
plan is seen as the road map and communication vehicle for quality Cancer type:
care, and thus we will use this chapter to describe it in some detail,
Tumor size:
and will briefly review research in this area. We will also provide
some perspective on the health policy impact of survivorship care Treatment history
plans as they relate to current legislation, accountability, and quality Surgical procedures and dates:
improvement activities that are underway.
Radiation treatments:
Fields treated
WHAT IS THE SURVIVORSHIP CARE PLAN?
Toxicities
The IOM report recommends the development and utilization
of a treatment summary and survivorship care plan, a synoptic Chemotherapy regimen:
document that describes the patients cancer treatment experience Dates:
and provides guidance for the patients future care. Per the rec- Number of cycles received:
ommendations from the IOM Workshop Summary, Implementing
Total dose in mg/meters2 of those with cumulative late
Survivorship Care Planning,16 survivorship care plans should
effects:
always contain certain core elements:a cancer treatment history,
the potential long-term and late effects of treatment, recommended Other oncologic medical therapies
surveillance for long-term and late effects, and recommended sur- Chemotherapy toxicities
veillance for recurrence and new cancers. Additionally, links to
resources that provide psychosocial support for survivors should Treating physicians and contact information
be included in the care plan, as well as information on general Surgeon:
health and wellness for cancer survivors. The plan should also Medical oncologist:
contain a clear timeline for the patients follow-up care, and ide-
ally will identify the appropriate physician to provide it. These Radiation oncologist:
core items will allow for improved communication between the Primary care provider:
treating oncologist(s) and the primary care provider, as well as
Other:
educating and empowering the patient (see Boxes 87.1 and 87.2 for
examples of the content). Adapted from Hewitt M, Greenfield S, Stovall E. From Cancer
The survivorship care plan should summarize the cancer treat- Patient to Cancer Survivor:Lost in Transition, 2005. With permission
ment history, including information on past surgery, chemother- from the National Academy of Sciences, Courtesy of the National
apy, radiation, blood transfusions and/or bone marrow transplant, Academies Press, Washington, D.C.
and any continuing medical therapies such as endocrine therapy.
Complications that the patient experienced during treatment
should also be noted, such as chemotherapy toxicities. This section fatigue, pain, sexual dysfunction, cardiac problems, psychological
should also include provider contact information for the medical distress, and many other conditions.17 It is essential to provide the
oncologist, surgeon, radiation oncologist, and other treating cli- patient with guidance on what symptoms require an immediate
nicians. Accurate treatment records and a clear understanding of visit with a clinician, such as chest pain, shortness of breath, or
the patients cancer treatment experience are essential to create the localized limb swelling, and what does not. This vital information
most effective and informative plan for the patients future care. must be provided to the patient in a clear, easy-to-read written for-
On the basis of the patients cancer treatment history, the known mat so that the patient is not struggling to remember verbal infor-
potential long-term and late effects of each treatment should be mation given during a visit that may not be accurately recalled. This
described, along with recommendations for the surveillance and section will also assist primary care providers to identify long-term
evaluation of these effects. Long-term and late effects can include and late effects that present in their survivor patient population.
 chapter 87 implementing the survivorship care plan 647

on organizations that provide support and resources, such as the

Box 87.2 Example of Survivorship Care Plan Description of
Long-Term and Late Effects Cancer Support Community, should be included in the care plan.
Also important are resources and tools for general health and
Surgical wellness, such as the nutrition guidelines for survivors from the
American Cancer Society (ACS), as maintaining a healthy weight
Numbness and effectively managing comorbid conditions are essential for
Weakness cancer survivors and may help reduce the risk of early morbidity
in this population (see Table 87.1 for list of resources). Support for
Pain
the need of these physical and emotional services among survi-
Loss of range of motion vors can be found in large scale Internet-based surveys conducted
Lymphedema by the LIVESTRONG Foundation in 2006 and 2010. The majority
of survey respondents (98%) experienced continued physical and
Chemotherapy emotional concerns after cancer. Of the 2010 survey respondents,
Fatigue only half of those who experienced emotional concerns received
help (50%). Unfortunately, the reported receipt of post-treatment
Neuropathy care for these issues actually decreased between 2006 and 2010.18
Cognitive dysfunction Additionally, a recent report from the IOM, Cancer Care for the
Weight gain Whole Patient: Meeting Psychosocial Health Needs, underlines
the importance of coordinating medical care with psychosocial
Sexual dysfunction serves and linking survivors to appropriate psychosocial care
Psychological distress providers.19
Ovarian failure with associated menopausal symptoms
Osteoporosis from premature ovarian failure Obstacles and Challenges to Completing the
Increased risk of leukemia after anthracycline-based
Treatment Summary and Survivorship Care Plan
chemotherapy The creation of an effective and informative survivorship care
plan depends upon obtaining primary-source treatment records,
Increased risk of cardiac dysfunction after anthracycline- or prospectively creating and updating the care plan throughout
based chemotherapy and/or trastuzumab the cancer care trajectory. Without accurate pathology reports,
Radiation chemotherapy records, operative reports, radiation summaries,
and other treatment records, the survivorship care plan could
Fibrosis be greatly compromised. However, depending on where the
Breast pain patient was treated, getting timely access to patient records can
Telangectasia be a struggle, and all records are not equal in clarity and content.
Radiation oncologists often provide a treatment plan and con-
Atrophy cluding summary note, both of which are particularly helpful
Poor cosmetic outcome in identifying the extent of the patients radiation treatment. In
addition, surgeons routinely provide a detailed operative report
Cardiac late effects
with the pre- and postoperative diagnosis clearly stated, along
Hormone therapies with the details of the procedure. However, medical oncolo-
gists seldom provide a detailed treatment plan at the beginning
Tamoxifen
of treatment or a summary of care received upon completion
Hot flashes of treatment, which makes it difficult to determine the chemo-
Increased risk of stroke therapy treatment actually received. Medical records may con-
tain a brief letter dictated to the primary care provider outlining
Increased risk of uterine cancer the proposed treatment course, but there is rarely an organized
Increased risk of blood clots summary of what treatment the patient actually received. It is
extremely important to include the chemotherapy medications
Aromatase inhibitors
given during treatment, as they can have significant long-term
Increased risk of osteoporosis and late effects; for example, doxorubicin and cyclophospha-
Increased risk of fractures mide can potentially have cardiac late effects. 20 If the medical
oncologist has not summarized the chemotherapy and/or ongo-
Vaginal dryness
ing endocrine treatment that a patient has received, it may be
Arthralgias necessary to search for a chemotherapy treatment flow sheet or
nursing notes to help determine the prescribed treatments and
The psychosocial needs of the survivor are frequently neglected the total dose received.
both during and after treatment. The treatment summary and care It can be time-consuming to request and collect treatment
plan can fill this gap by including recommendations and/or refer- records from the surgical, radiation, and medical oncologist offices,
rals for depression, anxiety, and relationship issues. Information but it is absolutely essential to creating an accurate treatment
648 Section XIV survivorship

Table87.1 Online Resources for Cancer Survivors Box 87.3 Online Resources for Preparing Treatment Summaries
and Survivorship Care Plans
Organization and Description Website
American Cancer Society:ACS is a nation-wide www.cancer.org ASCO treatment summary and care plan templates for breast
voluntary health organization that and colon cancer:www.asco.org/treatmentsummary.
provides cancer resources online and in the Journey Forward, guiding survivors as they move ahead.
community. A collaborative project of The National Coalition for Cancer
National Cancer Survivorship www.ncsi.org.uk Survivorship, Wellpoint, the UCLA Survivorship Center,
Initiative:Working to ensure that ensure that Genentech, and the Oncology Nursing Society:www.journey-
those living with and beyond cancer in the forward.org.
UK get the care and support they need to LIVESTRONG care plan, powered by Penn Medicine
lead healthy lives OncoLink:http://www.livestrongcareplan.org.
CancerCare:CancerCare is a nonprofit www.cancercare.org
organization that provides free professional
support services online and by telephone for
of an automatically generated survivorship care plan showed that
anyone affected by cancer.
oncology providers were generally satisfied with and were moti-
LIVESTRONG Foundation:LIVESTRONG www.livestrong.org vated to use these care plans.22
provides information and survivorship Prospective preparation of the treatment summary and care
resources online and in the community. plan is preferred to retrospective reconstruction of past treat-
European Cancer Organisation:ECCO is a www.ecco-org.eu ments. ASCO created sample templates for a combined treatment
not-for-profit federation that exists to uphold plan/treatment summary for breast and colon cancer patients that
the right of all European cancer patients to
are designed to be used prospectively; there is also an associated
the best possible treatment and care.
one-page survivorship care plan that outlines the recommended
NCI Office of Cancer Survivorship: OCS cancercontrol.cancer.gov/ocs follow-up care and surveillance for these patients (see Box 87.3
provides current information on survivorship for website URL). ASCO has also developed a generic template
research, resources, and publications.
that can be used for any cancer site, and has in preparation other
Journey Forward:Features patient and www.journeyforward.org disease-specific templates, which can be quickly completed before
provider resources for development and use or during a patient visit by the treating physician or other staff.
of survivorship care plans. Journey Forward, a collaborative project dedicated to improv-
National Cancer Survivorship Resource smhs.gwu.edu/gwci/ ing post-treatment care, has downloadable interactive templates
Center:Aresource of the George Washington survivorship/ncsrc that can be customized and updated by patients and providers.
University Cancer Institute, this online center Aresource library is also available on the site to link with spe-
provides resources and support for both cific symptoms or concerns that survivors may report. All of these
patients and providers. templates cover all of the core elements of the treatment summary
Cancer Support Community:CSC provides www.cancersupportcommun and survivorship care plan as recommended in the IOM report on
support groups, activities, and other resources ity.org cancer survivorship care.
online and in their many community sites.
A more comprehensive approach to the survivorship care plan
The National Coalition for Cancer www.canceradvocacynow. may include information on the patients comorbid conditions
Survivors:NCCS is the oldest survivor-led org from primary care as well as specialist care such as cardiology,
cancer advocacy organization in the country, endocrinology, or pulmonology. This more holistic approach is
advocating for quality cancer care for all
much more resource intensive and may be easier to carry out in
Americans and empowering cancer survivors.
specialized survivorship clinical practices or in large healthcare
institutions with access to multiple areas of care. The compre-
hensive plan will provide a broader picture of the patients overall
health, along with the core elements of the survivorship care plan,
and may assist with providing well-coordinated care for cancer
summary and care plan document. Collecting records from large survivors.
academic institutions and cancer centers can be much simpler
than collecting records from individual physician offices scat-
tered throughout the community, but both can be accomplished. Implementing the Survivorship Care Plan
Record retrieval can be carried out by administrative, research, or Each practice setting needs to decide on a strategy that will permit
clinical staff; staff can also be trained to abstract records to begin the implementation of survivorship care plans:Focus on preva-
populating the treatment summary and care plan with these data lent or incident cases? Cover all disease types or begin with one?
before the patients visit.21 There are efforts underway to leverage Afocus on incident cases may simply mean adding the survivor-
existing cancer reporting structures, such as cancer registries, to ship care plan and discussion into the first follow-up visit after
simplify the process of care plan development by pre-populating active treatment ends; focusing on prevalent cases may require
care plan templates with available data on diagnosis and treat- doing outreach to patients who are no longer being seen in regu-
ment, such as the collaboration between Journey Forward and a lar follow-up care. Concentrating on one common cancer, such as
cancer registry software vendor. In the Netherlands, a recent trial breast, may ease the transition to using the care plans in a clinical

practice. In addition, decisions must be made on the format of the
plan and the communication with other treating physicians. Using
uniform templates with drop-down menus, check boxes, and pre-
populated data fields will reduce the amount of time needed to
complete the plan. Aconsistent approach across the practice is the
most efficient method for implementing survivorship care plans
for your survivor population.
The key goal of survivorship care planning is better communi-
cation among the oncology team, primary care providers, and the
patient, which will lead to better coordinated care for the survivor.
Awell-prepared survivorship care plan will empower the patient
and inform clinicians involved in their care and can provide a
framework for a shared-care model. Primary care providers who
have received a treatment summary and survivorship care plan
are extremely appreciative and have reported greater self-efficacy
in the follow-up care of cancer patients in their practice. In addi-
tion, for busy medical oncologists, having this single note in the
chart can simplify follow-up care for patients who are seen only
periodically after treatment ends.
CURRENT RESEARCH ON SURVIVORSHIP
CARE PLANS
As the interest in implementing and using survivorship care
plans in practice has grown, so has research in this area. Studies
have reported on patient and provider preferences on the opti-
mal delivery and use of care plans,23 as well as the views of pri-
mary care physicians (PCPs) on the receipt and use of care plans
in practice.24 PCPs report low rates of receiving care plans, but
when they do receive them, PCPs show greater knowledge and
self-efficacy in managing cancer survivors.25 It has been reported
that young adult cancer survivors who receive a care plan feel
more confident in managing their own post-treatment care.26
The opinions of most patients and providers on care plans are
favorable.27 However, creating care plans is still regarded as a
time-consuming, labor-intensive task. The new Commission on
Cancer (COC) accreditation standards on survivorship care will
be implemented shortly, and thus it is important to devise a realis-
tic, scalable strategy for using care plans in practice.
HEALTH POLICY IMPLICATIONS OF THE
SURVIVORSHIP CARE PLAN
The need for coordination of care for cancer survivors is emblem-
atic of the challenges faced by many patients with chronic dis-
eases, where complex care is often delivered by specialists in
the absence of primary care involvement. In addition, the real
or perceived shortage of primary care providers in the United
States leads patients to rely heavily on their sub-specialty phy-
sicians. Unfortunately, as a result, many important healthcare
processes are often ignored or overlooked in specialty-only care.
Indeed, several studies in the Medicare population have shown
that optimal cancer care occurs when adult cancer patients are
treated by both cancer specialists and primary care providers.28
No doubt similar findings would occur in other chronic diseases.
The important role of preventive health services for non-cancer
conditions, as well as management of comorbid conditions, can-
not be overlooked in the cancer survivor. The implementation of
treatment summaries and survivorship care plans may be a first
chapter 87 implementing the survivorship care plan 649
step in enhancing better care for cancer survivors, and may serve
as a model testable in other chronic diseases. Pending legislation
calls for the improvements to the Medicare physician payment
system, including the use of cancer care planning. Introduced by
representatives Lois Capps (D-CA) and Charles Boustany, MD
(R-LA), the Planning Actively for Cancer Treatment (PACT) Act
(HR 2477)would foster the development and communication of
care plans.
CONCLUSION
Medical oncology is a relatively young specialty, compared to sur-
gery and radiation oncology. It has been traditional for surgeons
to describe their cancer treatment (surgery) with a detailed opera-
tive note. Similarly, it is customary for radiation oncologists to
provide a treatment summary of the amount of radiation given
and the specific ports involved, including a short-term descrip-
tion of local tissue tolerance and complications. Until the last half
of the twentieth century, pharmacological treatments for cancer
were primarily palliative. With the advent of combination chemo-
therapy and multimodality therapies, many pediatric and adult
cancers are now curable. However, treatment is administered over
a prolonged period of time, largely in the outpatient setting. The
tradition of preparing a treatment summary is largely absent from
the culture of medical oncology practice.
Documentation of drug type and dosages received will ulti-
mately be important, as more information is gathered about the
late toxicities of various treatments. Since cancer in older adults
frequently co-occurs with other comorbid conditions, communi-
cation about known potential organ toxicities (e.g., heart, lung,
kidney) to the patient and their primary care providers is likely
to be critical in the prevention of secondary late and long-term
effects. Furthermore, the development of a treatment summary
and care plan is essential for improving the quality and coordina-
tion of care for the growing population of cancer survivors. The
time has come for this to occur, and we predict that we are at the
tipping point for widespread adoption of the cancer treatment
summary and survivorship care plan. As these efforts roll out in
the coming years, through both natural and planned experiments,
there will be ample opportunity for formal research and informal
evaluative projects. Examination of patient and provider satisfac-
tion are key measures, but reduction in duplication/unnecessary
testing and better coordination of care will be important out-
comes to measure.
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8. Levit L, Balogh E, Ganz P. Delivering High Quality Cancer
Care:Charting a New Course for a System in Crisis. Washington,
DC:The National Academies Press; 2013.
9. Rix B. A national strategy for cancer rehabilitation and palliative care
in Denmark. Psycho-Oncology. 2011;20(Suppl S1):236.
10. Oeffinger KC, Mertens AC, Sklar CA, etal. Chronic health con-
ditions in adult survivors of childhood cancer. N Engl J Med.
2006;355:15721582.
11. Mertens AC, Yasui Y, Neglia JP, etal. Late mortality experience in
five-year survivors of childhood and adolescent cancer:the child-
hood cancer survivor study. J Clin Oncol. 2001;19:31633172.
12. Shankar SM, Carter A, Sun CL, etal. Health care utilization by adult
long-term survivors of hematopoietic cell transplant:report from the
bone marrow transplant survivor study. Cancer Epidemiol Biomar
Prev. 2007;16:834839.
13. Fraser CJ, Bhatia S, Ness K, etal. Impact of chronic graft-versus-host
disease on the health status of hematopoietic cell transplantation
survivors:a report from the Bone Marrow Transplant Survivor Study.
Blood. 2006;108:28672873.
14. Rechis R, Beckjord EB, Avery SR. The Essential Elements of
Survivorship Care:ALIVESTRONG Brief. Austin, TX:Lance
Armstrong Foundation (LIVESTRONG); 2012.
15. McCabe MS, etal. Survivorship programs and care planning. Cancer.
2013;119(S11):21792186.
16. Hewitt M, Ganz PA. Implementing Cancer Survivorship Care
Planning:Workshop Summary. Washington, DC:National Academies
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17. Ganz PA. Monitoring the physical health of cancer survi-
vors:a survivorship-focused medical history. J Clin Oncol.
2006;24:51055111.
18. Rechis R, Reynolds K Beckjord EB, etal. I Learned to Live With
It Is Not Good Enough:Challenges Reported by Post-Treatment
Cancer Survivors in the LIVESTRONG Surveys. Austin, TX:Lance
Armstrong Foundation (LIVESTRONG); 2012. http://www.
livestrong.org/What-We-Do/Our-Approach/Reports-Findings/
Survivor-Survey-Report.
19. Adler NE, Page AEK. Cancer Care for the Whole Patient:Meeting
Psychosocial Health Needs. Washington, DC:Institute of Medicine,
National Academies Press; 2007.
20. Carver JR, Shapiro CL, Ng A, etal. American Society of Clinical
Oncology Clinical Evidence Review on the ongoing care of adult
cancer survivors:cardiac and pulmonary late effects. J Clin Oncol.
2007;25:39914008.
21. Rosales AR, Byrne D, Burnham C, etal. Comprehensive survivorship
care with cost and revenue analysis. J Oncol Pract. 2013; epub ahead
of print. DOI:10.1200/JOP.2013.000945.
22. Nicolaije KA1, Ezendam NP, Vos MC, et al. Oncology providers evalu-
ation of the use of an automatically generated cancer survivorship care
plan: longitudinal results from the ROGY Care trial. J Cancer Surviv.
2013;8(2):112.
23. Mayer DK, Gerstel A, Leak AN, Smith SK. Patient and provider pref-
erences for survivorship care plans. J Oncol Pract. 2012;8(4):e80e86.
24. Shalom MM, Hahn EE, Casillas J, Ganz PA. Do survivorship care
plans make a difference? a primary care provider perspective. J Oncol
Pract. 2011;7(5):314318.
25. Forsythe LP, Parry C, Alfano CM, etal. Use of survivorship care
plans in the United States:associations with survivorship care. J Natl
Cancer I. 2013;105(20):15791587.
26. Casillas J, Syrjala KL, Ganz, PA, etal. How confident are young adult
cancer survivors in managing their survivorship care? a report from
the LIVESTRONGTM Survivorship Center of Excellence Network. J
Cancer Surviv. 2011;5(4):371381.
27. Salz T, Oeffinger KC, McCabe MS, Layne RM, Bach PB.
Survivorship care plans in research and practice. CA Cancer J Clin.
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28. Earle CC, Neville BA. Under use of necessary care among cancer sur-
vivors. Cancer. 2004;101:17121719.
 CHAPTER88
Adult Survivors of
Childhood Cancer
Lisa A.Schwartz, Branlyn WerbaDeRosa,
and Anne E.Kazak
The survival rate of pediatric cancer has increased dramatically
in recent decades, with approximately 80% of childhood can-
cer survivors reaching five-year survival. Young adults who are
survivors of childhood cancer are no longer unusual; one out of
every 640 adults between the ages of 20 and 39 is now a survivor
of childhood cancer.1 For these adults, the impact of the intensive
treatment responsible for their survival may also result in lifelong
morbidities related to medical problems, risk for future medical
problems or second cancer diagnosis, and cognitive difficulties.
Moreover, because of the cancer experience and long-term effects,
survivors also face psychosocial challenges as adults. The goals of
this chapter are to (1) provide a rationale for the unique health
and psychosocial issues of adult childhood cancer survivors; (2)
describe the potential physical, neurocognitive, and psychosocial
issues relevant to this population and factors that may contribute
to risk and resiliency; (3) describe the impact of these issues on
developmental outcomes; and (4) discuss future directions and
clinical implications for healthcare providers and research.
RATIONALE FOR ATTENTION TO THE
NEEDS OF ADULT CHILDHOOD CANCER
SURVIVORS
The long-term problems and risks of childhood cancer survivors,
known as late effects, coupled with the burgeoning population
of childhood cancer survivors, have resulted in critical national
attention to the issues facing this population. As an example,
childhood cancer survivorship issues were the focus of a report
from the Institute of Medicine,1 and care guidelines have been
developed (e.g., Childrens Oncology Group (COG) guidelines).2
In addition, the Childhood Cancer Survivorship Study (CCSS;
https://ccss.stjude.org) was formed as a multi-institutional con-
sortium to study the long-term outcomes of childhood cancer
survivors. Using epidemiological methods, the CCSS has assessed
the physical functioning and quality of life of over 20,000 sur-
vivors treated between the years 1970 and 1986 who were under
age 21 at diagnosis. In a second cohort, treated between 1987 and
1999, approximately 15,000 survivors have been assessed.2 The
CCSS and the many single site and smaller collaborative research
reports in this field are significant and comprehensive sources of
current understanding of long-term outcomes of childhood can-
cer survivors.
It is critical to examine the needs of adult childhood cancer
survivors as potentially unique from cancer survivors who were
adults when ill. First, these survivors experienced treatment dur-
ing critical developmental periods when they had not reached
full physical, emotional, or cognitive maturation. Therefore, their
long-term medical, psychological, and cognitive late effects may
differ as a function of their stage of development at diagnosis and
treatment. Similarly, in addition to the general trauma of cancer,
these patients may have not yet fully developed coping skills, emo-
tional regulation, and cognition to help them through the expe-
rience. In fact, some who were infants or young children at the
time of treatment remember very little, if anything, of the treat-
ment experience. Their risk for long-term difficulties may increase
when entering adulthood, as these survivors gain the cognitive
ability to process and comprehend the implications of the cancer
experience in terms of physical and psychosocial vulnerabilities.
Furthermore, the cancer experience may have interrupted educa-
tion or time with family and friends. Subsequently, adult identity
formation and attainment of young adult developmental mile-
stones may be delayed or difficult to achieve. Further discussion
of the long-term sequelae of childhood cancer survivorship as it
relates to adults is presented below.
LONG-TERM HEALTH VULNERABILITY
Childhood cancer survivors may be burdened with lifelong medi-
cal problems and risks that require attention to health-promoting
behaviors and medical follow-up.
Physical Late Effects
Many childhood cancers and related treatments put survivors at
increased risk for long-term medical morbidities and early death,
though the impact of treatment is often not apparent until adult-
hood. In fact, morbidities seem to increase with age rather than
plateau. 3 Some treatments (e.g., radiation and certain chemo-
therapies) cause irreversible tissue and organ damage or may be
652 Section XIV survivorship
carcinogenic. Subsequent physical late effects may impact major
organ systems (e.g., heart, lungs, vision, endocrine, and immune
systems). The CCSS found that 62% of survivors have at least one
chronic condition, and 28% had a severe or life-threatening condi-
tion.3 High-risk chronic health conditions that occur at a rate eight
times higher than in siblings include second cancers, cardiovascu-
lar disease, renal dysfunction, severe musculoskeletal problems,
and endocrinopathies.3 The most prevalent problems are pulmo-
nary, endocrine or reproductive, cardiac, and neurocognitive.
Infertility, in particular, is a late effect that often causes distress in
adulthood and serves as a reminder of cancers long-term impact.
Other nonspecific outcomes have been reported, such as increased
frequency of fatigue and pain. Furthermore, because of such phys-
ical late effects, survivors have also reported more functional limi-
tations compared to siblings. These include less ability to attend
work or school, and to engage in self-care and routine activities.
Not surprisingly, brain tumor and bone cancer survivors are often
most at risk for such limitations. Unfortunately, as described next,
survivors often demonstrate suboptimal health-promoting behav-
iors and lack sufficient knowledge to enhance medical outcomes.
Health Promotion and Knowledge
Health promotion and long-term medical surveillance are criti-
cal given the risk for second cancers and later chronic health
conditions such as cardiac and pulmonary disease, diabetes, and
osteoporosis. Therefore, the optimal health of survivors is not only
dependent on medical surveillance, but also on patients, provid-
ers, and other supportive people having accurate knowledge, and
survivors following through with important health-promoting
behaviors.
Health-promoting practices are similar to those recommended
for the general public. However, health-promoting behaviors are
more critical for survivors because of their vulnerable health sta-
tus. For example, smoking and other tobacco use may exacerbate
the risk of cardiac and pulmonary disease, including lung cancer;
alcohol may exacerbate liver and cardiac damage resulting from
various therapies; and ultraviolet exposure may increase risk of
skin cancer heightened by radiation.4 Modifiable behaviors that
are especially important for survivors include eating a balanced
diet, exercising regularly, avoidance of tobacco, minimizing alco-
hol intake, sunscreen use, and safe sex practices to avoid sexually
transmitted diseases. Many studies have demonstrated that survi-
vors engage in health-risk behaviors at equal4,5 rates as same-age
peers, while some have found lower rates. However, survivors still
engaged in smoking, drinking, and marijuana use at a rate that
should be concerning, based on their increased risk for new can-
cer diagnoses and other diseases. Risk factors for these unhealthy
behaviors seem to be similar to that of the general population.
However, because mood and attentional difficulties have been
found to be a significant risk factor, survivors are at increased risk
for health-harming behaviors given their potential for attention
problems, anxiety, and distress related to late effects and cancer
history.
Exercise and diet practices are also not at optimal levels for most
survivors. The CCSS found that survivors were less likely to meet
recommendations for physical activity and to report fewer leisure
activities than siblings. Higher levels of worry and more barri-
ers to physical activity are related to inactivity among survivors.
Similarly, a prospective study of young adult survivors found that
survivors had significantly lower levels of physical activity than
non-sibling control participants.6 Among those survivors, health
competence beliefs and self-perceptions of greater health prob-
lems were associated with lower levels of physical activity, whereas
greater provider-reported late effects were not.6 In another study of
over 200 adolescent and young adult survivors, 79% did not meet
guidelines for fruit and vegetable consumption, 68% did not meet
guidelines for calcium intake, 52% did not meet guidelines for
exercise, and 42% were overweight or obese.7 Those over 18years
of age, compared to adolescents, were more likely to smoke (17%
vs. 1%), be obese (22% vs. 15%), and to have suboptimal calcium
intake (76% vs. 58%).7
Furthermore, screening practices are not optimal for survivors,
despite screening being essential to monitor risk for future can-
cers. Examples of important screening practices include breast
and testicular self-examinations, mammograms, skin examina-
tions, Pap smears, and colonoscopies. Data from the CCSS showed
that, although screening practices related to self-examinations
and imaging tended to be higher in cancer survivors than in sib-
lings, screening practices remained below optimal levels given
survivors risk for health problems, even when facing a signifi-
cantly higher risk for breast cancer due to chest radiation.8
Clearly, appropriate medical follow-up and disease knowl-
edge are also essential for health promotion, disease manage-
ment, and monitoring for future problems. To facilitate optimal
care, survivors should have a complete record of cancer-related
details, including date of diagnosis; cancer histology and stage;
and treatment history, including surgery, chemotherapy, and
radiation. Unfortunately, previous studies evaluating health
knowledge of childhood cancer survivors demonstrate survi-
vors suboptimal knowledge about their cancer diagnosis, treat-
ment, and cancer-related health risks. For example, CCSS findings
showed that although survivors knew about their diagnosis and
treatment in general, they did not know specifics, such as the
names of chemotherapy, even when prompted with the name.9
In addition, only 35% thought their cancer treatment could
cause long-term effects on their health.9 Thus, despite best efforts
to educate patients, they may still lack sufficient knowledge to
actively manage their health and navigate the medical system.
Furthermore, many healthcare providers lack familiarity with
cancer-related health risks and risk-reduction methods relevant
for this population.
Taken together, long-term physical late effects and need for con-
tinued care may heighten the risk for psychological late effects, as
described later. This is especially true for survivors transitioning
to adulthood, as they realize the impact of their disease and face
the potential for worsening late effects. Furthermore, as described
below, childhood cancer survivors often experience neurocogni-
tive late effects that have long-term implications for educational
and vocational attainment.
NEUROCOGNITIVE LATE EFFECTS
AND IMPACT ON EDUCATIONAL AND
VOCATIONAL ATTAINMENT
Cancers, related treatments involving the central nervous system
(CNS), and the cumulative negative impact of cancer on school

attendance and achievement have all been associated with ongo-
ing long-term cognitive effects. Specific neuroanatomical effects
have been documented with magnetic resonance imaging, com-
puterized tomography scans, and neuropsychological testing.
In addition to evidence of decreased intelligence quotient (IQ),
especially in those survivors of brain tumors and acute lympho-
blastic leukemia (ALL), evidence suggests impairments in the
following: attention and concentration, processing speed (e.g.,
more time required to complete work, slower to understand),
visual perceptual skills (e.g., difficulty with writing, interpreta-
tion of visual information such as maps or puzzles), executive
functioning (e.g., problems with planning, insight, organization),
memory, cognitive fatigue (i.e., difficulty with concentrating for
long periods of time and more tired than expected after a day at
work or school), and overall acquisition of new information and
skills.10,11 The specific pattern of neurocognitive deficits depends
in part on age at diagnosis, type of cancer, type of cancer treat-
ment, and tumor site.10,11 Risk is highest for CNS malignancies,
cranial radiation therapy, intrathecal therapy, and for those who
received a blood/stem cell transplant. In terms of age, the degree
of brain maturation at the time of therapy has been directly cor-
related with the potential for CNS insult, with younger children
are greatest risk.10,11 Finally, the effects of cancer and cancer
treatment on neurocognitive functioning are often delayed, with
most deficits not evident until one or more years post-treatment.
The impact of cancer survivorship on educational and voca-
tional attainment beyond high school is only beginning to be
understood. Some survivors may successfully compensate for
cognitive limitations until they reach high school or college, when
coursework requires more complex abstract reasoning, atten-
tion, and organization. Some studies have found that young adult
survivors are less likely than controls to have educational plans
beyond high school. Further, when compared to siblings, survi-
vors are more likely to be unemployed and living dependently,12
and less likely to be in managerial/professional jobs.13 Predictors
of such outcomes include cranial radiation, current cognitive or
attentional difficulties, physical or mental health problems, and
female gender.12,13 In contrast, there are several ways in which can-
cer may have a positive impact on survivors, including increased
motivation and determination to succeed in educational and
career pursuits and a tendency to choose careers that help others.
As survivors live longer and potentially experience less treatment-
related toxicities with treatment advances, it will be important to
continue to examine the impact of physical (e.g., neurocognitive
status) and environmental (e.g., missed school and experiences)
factors that influence outcomes among subgroups of survivors at
different points of development.
PSYCHOLOGICAL LATE EFFECTS AND
IMPACT ON ADJUSTMENT
Attention to psychological late effects and overall psychosocial
adjustment is important given the health and neurocognitive vul-
nerabilities associated with childhood cancer survival. Findings
are generally supportive of the positive adaptation made by the
majority of survivors. Most cancer survivors are found to be
well adjusted relative to healthy control participants, non-ill sib-
lings, and standardized norms. However, it is important to note
that some studies suggest that young adult survivors exhibit a
Chapter88 adult survivors of childhood cancer 653
tendency to deny or minimize problems.14 Survivors may also
experience response shift, whereby judgments of well-being may
be made relative to expectations for someone having had cancer,
as opposed to comparing themselves to healthy, never-ill individ-
uals.14 Thus, many survivors may be functioning well compared to
peers, others may have adapted a coping style that minimizes or
reframes outcomes, and a select few may acknowledge difficulties
as survivors.
Psychological Vulnerability
Despite generally positive outcomes, some areas of potential
concern exist, especially as survivors enter adulthood. Young
adulthood is a potentially stressful developmental period that
includes setting and pursuing goals related to employment,
living arrangements, spouse selection, and parenthood. For
survivors, this may be an especially distressing period due to
the potential for increased awareness of, and reflection on, the
impact of cancer on their health, education, and relationships.
Specific ways in which survivors may experience continued
impact of their cancer on their development and experience of
distress are discussed below.
Studies show more depression, suicidal symptoms, global dis-
tress, and post-traumatic stress in survivors than in their sib-
lings.15,16 Also, the presence of pain, fatigue, and other somatic
symptoms may be partially related to anxiety and worry. With
up to 50% of young adult survivors experiencing post-traumatic
stress (PTS) in the form of intrusive, avoidant, and arousal
symptoms16,17 and with a four to five time greater risk of get-
ting post-traumatic stress disorder (PTSD), a traumatic stress
framework is useful in understanding the psychological impact
of surviving cancer. Cancer can be an ongoing trauma in terms
of threat of future cancers or late effects, current late effects,
reminders of the cancer, and losses such as diminished social,
cognitive, and reproductive capacity. Young adult survivors cog-
nitive maturity and enhanced awareness of the implications of
their cancer, in conjunction with newly identified late effects in
early adulthood, may re-expose them to the trauma of cancer.
Symptoms of PTS for these young adults may include rumina-
tion, intrusive thoughts, frequent nightmares about cancer or
related experiences, increased arousal when thinking or talk-
ing about cancer, avoidance of thinking or talking about cancer,
avoidance of healthcare settings or doing things to take care of
health, hypervigilance of body and symptoms, and feeling that
life is prematurely shortened. Such symptoms have been shown
to relate to distress and impairment in this population as well as
health behaviors.
There are several factors that have been associated with dis-
tress of childhood cancer survivors during young adulthood.
Survivors perception that their cancer treatment was intense16
and their perceptions of current health and life threat17 have been
associated with both PTS and more general distress. Demographic
factors, including female gender, lower socioeconomic status, lack
of employment, lower educational achievement, and single status,
have also been associated with increased distress.16,17 Objective
medical data related to the cancer, treatment, age at diagnosis, or
time since treatment have rarely been shown to predict distress.
Beliefs about health competence have been shown to moderate the
relationship between late effects and PTS. Thus, it is important to
assess the patients perceptions of his or her experience and related
654 Section XIV survivorship
beliefs, in addition to demographic and disease factors, when
assessing risk for poor psychosocial outcomes.
Because of increasing cognitive maturity, young adult survi-
vors are also likely to experience positive benefits as a result of
their cancer experience. Research has shown that survivors have
enhanced coping abilities and motivation in various life domains,
and experience post-traumatic growth (PTG),18 which is the pro-
cess of applying positive interpretations and finding meaning in
a traumatic event. By doing so, the experience of trauma may
facilitate positive changes related to self-concept, relationships,
and life philosophy. One study with adolescent survivors found
that the majority of them and their parents identified positive
consequences as a result of their cancer in the domains of self,
relationships, and future plans.18 The CCSS found that survivors
were significantly more likely to report perceived positive impact
(PPI)a similar construct to PTGof cancer than siblings. PPI
was greater for survivors who were female, non-white, older at
diagnosis, had at least one intense therapy, had a second malig-
nancy or relapse, and those with less time since diagnosis.19 Thus,
interventions to enhance perceived positive meaning of the cancer
and to reduce the negative impact of PTS and other forms of dis-
tress are indicated.
SOCIAL RELATIONSHIPS AND RELATED
DEVELOPMENTAL OUTCOMES
Social and romantic development may also be impacted for sur-
vivors. In contrast with evidence that childhood and adolescent
survivors social skills are similar to those of their peers, young
adult survivors are more likely to report difficulty forming rela-
tionships with same-sex peers and romantic relationships, and are
less satisfied with both types of relationships. Indeed, these survi-
vors evidence lower marriage rates and/or marry later than peers,
and may have a higher rate of divorce than the general population.
Although the specific factors that may lead to these developmental
outcomes have not been well studied, young adult survivors may
experience unique challenges that impact relationships into adult-
hood, such as how and when to disclose information related to
their health and fertility, a past history of relationship disruptions
or less opportunity to develop relationships, and potential changes
in appearance that become more salient to a survivor with age.20
The experience of childhood cancer may also impact fam-
ily relationships and autonomy development into adulthood.
Developmentally, parents are critical in the transition to young
adulthood. Childhood cancer survivors are no exception, particu-
larly given the central role that parents continue to play in moni-
toring their offsprings health. One study found that parents of
survivors were three times more likely to attend medical appoint-
ments than parents of controls.21 Reason for attending appoint-
ments with their young adult children include familial experience,
parental duty, personal interest in follow-up care, and concern
for childs health and well-being. The reasons were not related to
demographic or treatment factors. Further, young adult survivors
live longer with their parents and are less independent from their
parents than peers. Therefore, facilitating the transfer of responsi-
bility for healthcare from the parent to the child is critical in this
adult population.
One potential factor that may continue to impact a young adult
survivors autonomy development and parentchild relationship
may be the ongoing impact of cancer on parental adjustment.
Although most studies have not found an increase in psychiatric
symptoms such as depression and anxiety in parents of long-term
survivors of childhood cancer, 22 studies support the enduring
experience of PTS among parents, including parents of young
adult survivors. Parents may retain traumatic memories of caring
for their sick children and may continue to fear for their childs
life. Parents of adult survivors also reported significantly greater
unresolved anger and sorrow than parents of child patients on
active treatment, which may, in part, explain why accompany-
ing their adult children to medical visits may be comforting or
decrease anxiety related to their childs health.22
Along with increased parental experience of PTS, it is not sur-
prising that parents of young adult survivors also report PTG,
which may also influence their young adults development. In
the previously mentioned study of PTG, almost all mothers and
fathers identified at least one positive outcome of cancer; the most
reported change was in how parents thought about their life.18
Parents also report that a unique bond was created with their now
adult childhood cancer survivor through experiencing a poten-
tially traumatic event together.21 Aunique relationship between
mothers and survivors may also develop due to the polarization
of roles for parents during cancer treatment (i.e., mothers become
more likely to be the main caregiver, whereas the father may focus
on continuing to work and other family responsibilities). 23 In fact,
survivors report closer relationships with mothers than fathers, 23
though this may not necessarily lead to better outcomes in all
domains. For example, the combination of lower encouragement
from fathers and greater involvement with mothers was associated
with impaired close relationships outside the family, especially for
female survivors.23
Finally, a survivors relationship with his or her siblings may
also be impacted by cancer. During treatment, siblings may expe-
rience less time with their parents, interruptions in their routines,
and worry that their sibling will die. Unfortunately, it is unknown
if distress and/or positive growth occurs long term for siblings,
and how this may impact the adult survivorsibling relationship.
Not surprisingly, one-third of siblings report moderate to severe
levels of PTS. Taken together, there is ample evidence to support
PTS as a salient model of long-term adjustment for the entire fam-
ily and the need for family-centered assessment and interventions
in the context of long-term survivorship care.
LONG-TERM CARE FOR SURVIVORS
Adult survivors of childhood cancer require long-term surveil-
lance to monitor for future cancer risk and morbidities and to
manage current physical and psychological problems. Care should
be risk-based and comprehensive (COG guidelines).2 Risk-based
care incorporates assessment and knowledge of the previous can-
cer, cancer therapy, genetic predispositions, lifestyle behaviors,
and comorbid health conditions.
For adult survivors, care may be delivered by oncologists or
other specialists, general practitioners, or a shared care model,
whereby various providers share the responsibility of providing
long-term follow-up care.
While survivors will inevitably require transfer to adult-oriented
care, the transfer of care has proven to be a considerable challenge
for survivors and their providers. Many patients and families are

reluctant to leave their pediatric oncologists and the associated
comprehensive care. Providers are also apprehensive to transfer
given the paucity of adult providers with expertise in caring for
pediatric cancer survivors. Furthermore, the fact that many sur-
vivors are asymptomatic, despite risks for significant morbidities
and second cancers as adults, may make them less likely to seek
appropriate care as adults. Given the increased risk for PTS among
adult survivors, the transition process to adult care may serve as
an additional cancer-related traumatic event, and warrants fur-
ther research and clinical attention. In fact, over 50% of survivors
do not seek appropriate risk-based care as adults.24
Understanding the factors that promote readiness to transi-
tion to adult care is critical for designing interventions to sustain
engagement in care in the adult medical system post transfer.
The Socio-ecological Model of Young Adult Readiness for
Transition (SMART) is an empirically validated model of tran-
sition readiness that emphasizes the importance of understand-
ing the socio-ecology of the transition process with regard to
non-modifiable factors (sociodemographics/culture, access/insur-
ance, medical status/risk, and neurocognitive functioning/IQ)
and modifiable factors (knowledge, beliefs/expectations, goals/
motivations, skills/self-efficacy, relationships/communication,
and psychosocial functioning/emotions) of multiple stakehold-
ers (patient, parent, and provider), as well as the developmental
maturity of the patient.25 Research has found that patients, par-
ents, and providers emphasize different aspects of the model as
most salient to them, highlighting the need for early discussion
about the transition process and interventions that incorporate
multiples stakeholders.25
FUTURE DIRECTIONS AND CLINICAL
IMPLICATIONS
Existing research supports the overall promise of healthy survival
for many childhood cancer survivors as they enter adulthood. In
particular, ongoing epidemiological research has been instrumen-
tal in describing this growing population, while science has also
progressed in terms of understanding ongoing medical risks asso-
ciated with cancer and its treatment during childhood. There has
also been a substantive increase in the number of studies investi-
gating psychosocial outcomes in the past decade.
Most results support the resiliency and quality of life of long-term
survivors. However, a significant minority experience distress,
including PTS. In addition, some adult survivors are achieving
young adult developmental milestones at slower rates, or with more
difficulty, than their peers. These developmental tasks include
becoming increasingly independent from ones family, pursuing
educational and vocational goals, and establishing intimate rela-
tionships with friends and romantic partners. Poor psychosocial
outcomes are more prevalent with neurocognitive difficulties and/
or increased likelihood of restrictive health problems that impair
the ability to attain the goals of adulthood. However, outcomes are
most often predicted by subjective appraisal of the cancer experi-
ence and related coping abilities, and can be influenced by family
narratives of, beliefs about, and reactions to, the cancer experience.
Such difficulties can be exacerbated by the already difficult devel-
opmental period of transition to adulthood.
Unfortunately, for survivors, little is known about approaches
to facilitate an optimal transition to adulthood in terms of
Chapter88 adult survivors of childhood cancer 655
psychosocial outcomes, engagement in medical care, and
health-promoting behaviors. While treatments that are effec-
tive with younger survivors and/or their parents (e.g., cognitive
remediation, cognitive behavioral/family therapy approaches,
problem-solving therapies) may be helpful, they have not been
tested with this age group. Many adult survivors, like their
never-ill peers, are difficult to reach and engage in intervention
programs or medical follow-up. That is, they are engaged in busy
lives and may be less connected with the healthcare system. Some
are also on less-adaptive trajectories, engaging in risky behaviors,
facing difficult personal challenges, and learning how to cope and
adapt to life stressors more generally.
Thus, engaging young adult survivors in follow-up care
remains a significant challenge. Such care in early adulthood is
particularly important to promote successful transition to adult-
hood, in addition to providing the necessary medical care to
manage problems and promote long-term physical and psycho-
logical health. Annual follow-up appointments provide an ideal
setting for monitoring medical risks as well as broaching con-
cerns about overall psychological adjustment and worries about
well-being. Social relationships are also an area of importance,
as well as having the skills necessary to navigate the healthcare
system (this being a non-normative experience for young adults
in general). Beyond describing psychological symptoms, iden-
tifying the beliefs of young adult survivors about their health,
psychological well-being, and ability to stay well is also critical,
as they are modifiable targets of intervention to improve out-
comes. Furthermore, the artificial divide between the study of
psychological outcomes and health outcomes should be dimin-
ished given burgeoning research showing that one influences the
other (e.g., the relationship between PTS and health behaviors).
In summary, significant next steps in adult childhood cancer sur-
vivorship care are to engage young adult survivors in long-term
care, to extend assessment of them beyond typical psychological
and medical outcomes (e.g., assess developmental goals, beliefs,
health care utilization), and to better understand the influence
of such outcomes on long-term well-being and health-promoting
behaviors.
REFERENCES
1. Hewitt M, Weiner S, Simone J. Childhood Cancer Survivorship:
Improving Care and Quality of Life. Washington, DC:National
Academies Press; 2003.
2. Childrens Oncology Group. Long-Term Follow-Up Guidelines for
Survivors of Childhood, Adolescent, and Young Adult Cancers. 2006;
Version 2.0. www.survivorshipguidelines.org. Accessed February 28,
2014.
3. Oeffinger K, Mertens A, Sklar C, etal. Chronic health condi-
tions in adult survivors of childhood cancer. N Engl J Med.
2006;355(15):15721582.
4. Klosky J, Howell C, Li Z, etal. Risky health behavior among ado-
lescents in the childhood cancer survivor study cohort. J Pediatr
Psychol. 2012;37(6):634646.
5. Clarke S, Eiser C. Health behaviours in childhood cancer survivors:a
systematic review Eur J Cancer. 2007;43(9):13731384.
6. Hocking M, Schwartz L, Hobbie W, etal. Prospectively examining
physical activity in young adult survivors of childhood cancer and
healthy controls. Pediatr Blood Cancer. 2013;60(2):309315.
7. Demark-Wahnefried W, Werner C, Clipp E, etal. Survivors of child-
hood cancer and their guardians. Cancer Epidemiol Biomar Prev.
2005;103(10):21712180.
656 Section XIV survivorship
8. Oeffinger KC, Ford JS, Moskowitz CS, etal. Breast cancer surveil-
lance practices among women previously treated with chest radiation
for a childhood cancer. JAMA. 2009;301(4):404414.
9. Kadan-Lottick N, Robison L, Gurney J, etal. Childhood cancer survi-
vors knowledge about their past diagnosis and treatment:Childhood
Cancer Survivor Study. JAMA. 2002;287(14):18321839.
10. Nathan P, Patel S, Dilley K, etal. Guidelines for identification of,
advocacy for, and intervention in neurocognitive problems in sur-
vivors of childhood cancer:a report from the Childrens Oncology
Group. Arch Pediatr Adolesc Med. 2007;161(8):798806.
11. Hocking M, Alderfer M. Neuropsychological sequelae of childhood
cancer. In: Kreitler S, Ben Arush MW, Martin A, eds. Pediatric
Psycho-Oncology. West Sussex: Wiley-Blackwell; 2012:319333.
12. Kirchhoff A, Krull K, Ness K, etal. Physical, mental, and neurocogni-
tive status and employment outcomes in the childhood cancer survivor
study cohort. Cancer Epidemiol Biomar Prev. 2011;20(9):18381849.
13. Kirchhoff A, Krull K, Ness K, etal. Occupational outcomes of adult
childhood cancer survivors:a report from the childhood cancer sur-
vivor study. Cancer. 2011;117(13):30333044.
14. OLeary T, Diller L, Recklitis C. The effects of response bias on
self-reported quality of life among childhood cancer survivors. Qual
Life Res. 2007;16(7):12111220.
15. Recklitis C, Diller L, Li X, Najita J, Robison L, Zeltzer L. Suicide
ideation in adult survivors of childhood cancer:a report from the
Childhood Cancer Survivor Study. J Clin Oncol. 2010;28(4):655661.
16. Stuber ML, Meeske KA, Krull K, etal. Prevalence and predictors of
posttraumatic stress disorder in adult survivors of childhood cancer.
Pediatrics. 2010;125(5):11241134.
17. Rourke MT, Hobbie WL, Schwartz LA, Kazak AE. Posttraumatic
stress disorder (PTSD) in young adult survivors of childhood cancer.
Pediatr Blood Cancer. 2007 Aug;49(2):177182.
18. Barakat L, Alderfer M, Kazak A. Posttraumatic growth in adolescent
survivors of cancer and their mothers and fathers. J Pediatr Psychol.
2006;31(4):413419.
19. Zebrack B, Stuber M, Meeske K, etal. Perceived positive impact of
cancer among long-term survivors of childhood cancer:a report
from the childhood cancer survivor study. Psycho-Oncology.
2012;21(6):630639.
20. Zebrack B. Psychological, social, and behavioral issues for young
adults with cancer. Cancer. 2011;117(10):22892294.
21. Ressler I, Cash J, McNeill D, Joy S, Rosoff P. Continued parental
attendance at a clinic for adult survivors of childhood cancer. J
Pediatr Hematol Oncol. 2003;25(11):868873.
22. Hardy K, Bonner M, Masi R, Hutchinson K, Willard V, Rosoff P.
Psychosocial functioning in parents of adult survivors of childhood
cancer. J Pediatr Hematol Oncol. 2008;30(2):153159.
23. Hill J, Kondryn H, Mackie E, McNally R, Eden T. Adult psychosocial
functioning following childhood cancer:the different roles of sons
and daughters relationships with their fathers and mothers. J Child
Psychol Psychiatry. 2003;44(5):752762.
24. Nathan P, Greenberg M, Ness K, etal. Medical care in long-term
survivors of childhood cancer:a report from the childhood cancer
survivor study. J Clin Oncol. 2008;26(27):44014409.
25. Schwartz L, Brumley L, Tuchman L, etal. Stakeholder validation
of a model of readiness for transition to adult care. JAMA Pediatr.
2013;67(10):939946.
 CHAPTER89
Adolescents and Young
Adults with Cancer
Bradley J.Zebrack and Sheila J.Santacroce
INTRODUCTION
Cancer affects individuals in many aspects of their lives. The expe-
rience of diagnosis and treatment can adversely affect the qual-
ity of patients lives through physical pain, diminished energy,
changes to physical appearance, altered relationships, disruptions
in everyday activities, confrontation with mortality, and changes
in ones sense of self, the future, and the world.1 Individuals diag-
nosed with cancer during adolescence and young adulthood
(AYAs) face particular challenges due to the startling onset of a
life-threatening chronic disease during a time of life when cancer
is atypical among their peers. When cancer is diagnosed during
adolescence or young adulthood, issues such as premature con-
frontation with their own mortality, changes in physical appear-
ance, increased dependence on parents, disruptions of social
life and school or employment due to treatment, potential loss
of reproductive capacity, and health-related concerns about the
future are particularly distressing,2 can interfere with adherence
to therapy,3 and have long-term repercussions.4
Developmental characteristics distinguish AYAs from younger
children and older adults, most notably in the cognitive and psy-
chosocial spheres. Thus, AYA patients merit special attention
from psycho-oncologists with regard to medical treatment, psy-
chosocial adaptation, and the achievement of best possible out-
comes. In this chapter, we first define the AYA population and
then discuss how their unique developmental challenges interact
with their cancer experience. In light of a small yet emerging evi-
dence base, we conclude by considering developmentally appro-
priate approaches to psychosocial care and support for this special
population.
DEFINING THE POPULATION
Theories of human development provide a rationale for sug-
gesting age ranges to distinguish varied phases of adolescence
and adulthood. The late teenage years to mid-twenties represent
a period of emerging adulthood,5 with the transition from
adolescence to young adulthood occurring by age 20.1 In some
instances, age 30years serves as an upper boundary for young
adult.1 In the United States, the National Cancer Institute (NCI)
uses ages 1539years to define the AYA population. Canada gen-
erally uses the 1529-year age range first reported by the NCIs
2006 Surveillance, Epidemiology and End Results (SEER) pro-
gram,6 while Australia tends to favor 1525years.7 In the United
Kingdom, the Teenage Cancer Trust focuses on teenagers and
young adults (TYAs) aged 1324years, though European mem-
bers of EUROCARE employ the 1524-year bracket.7 Currently,
however, there exist no definitive biologic or psychological criteria
for defining an AYA. Instead, the AYA population in advanced
industrialized nations is most often defined by the unique devel-
opmental challenges that confront teenagers and young adults
as they mature from childhood and adolescence into young
adulthood.
AYAS CONFRONT UNIQUE
DEVELOPMENTALLY SPECIFIC CHALLENGES
Cancer patients of all ages typically experience stressors and
life disruptions in five domains:(1)interpersonal relationships,
(2)dependenceindependence, (3)achievement, (4)body-sexual
image and integrity, and (5)existential issues.1 While universal in
nature, the experience of these stressors and life disruptions will
vary depending upon the time of life when cancer occurs.
Interpersonal Relationships
Cancer can heighten AYA patients needs for support from friends
and peers.2 Yet, diagnosis of a friends cancer can be a source of
stress for healthy young people who can become anxious and
fearful about their own health and who may respond by avoiding
interactions with AYA patients. When interactions do occur, the
topic of cancer and its implications can be evaded or trivialized,
which might disrupt AYA patients ability to integrate the can-
cer experience. Social and psychological isolation and alienation
are commonly reported among AYA patients as they miss out on
sharing life experiences that are common among peers as well as
those unique to the cancer experience. 8 Self-view and identity are
shaped in part by a persons social roles, such as student, athlete,
employee, and friend, so when these roles are lost, disrupted, or
delayed due to cancer, distancing and alienation between AYA
patients and peers can occur.9 In adolescents with cancer, those
with low levels of social support and high levels of uncertainty
have been shown to have the highest levels of psychological dis-
tress.10 Cancer deprives AYAs from regular participation in
658 Section XIV survivorship
activities that are normal for the age, including experimentation
with substances and other risky behaviors, and may lead to over-
indulgence in attempts to convince themselves and others that
they are normal or unchanged from their former selves despite
their cancer diagnosis.
AYA patients can also be challenged in their sexual and intimate
relationships.11,12 Some AYAs adjust to cancer-related changes in
sexual desire and function without distress. Others feel increased
distress, including symptoms of depression or anxiety, which in
turn can further influence sexual desire and function. The AYA
patient may be confused or embarrassed about sexual problems,
may be unaware that they could be connected with cancer and
cancer therapy, and may hesitate to raise these concerns with
health professionals. Amain worry for AYA patients is deciding
if, when, and how to disclose their medical history in social situ-
ations, struggling with what and how much to say, particularly to
those with whom long-term intimacy may be desired.12,13 Faced
with varied potential reactions, AYAs can lack confidence because
they doubt acceptance. Severe loss of opportunities for peer inter-
action can be experienced as major deprivations that multiply
other illness stressors.
DependenceIndependence
Seriously ill people can become dependent, at least temporarily,
on family members, friends, or acquaintances. For AYAs, this can
involve recommencing dependency on parents and can be experi-
enced as a disturbing regression to previous developmental stages.
While AYA patients identify parents as their primary source of
support, the relationship is tenuous. AYA and parent coping styles
may be different, and may even clash. AYAs often struggle in their
attempts to balance desire for independence with forced depen-
dence on parents, wanting to go it alone but also recognizing
the need for parents to accompany them to doctors appointments,
to help make decisions about treatment, to assist with financial
aspects of the cancer experience, or even to provide physically
intimate care involving exposure of their bodies to their parents.
Achievement
Developmental milestones for AYAs include career planning,
maturing perspective on parents, and establishing intimate and
committed relationships. AYAs can face disruptions in realizing
achievement in these areas due to numerous heathcare visits, hos-
pitalizations, treatment toxicities, or sporadic school attendance.
These disruptions lead to social functioning disruption and some-
times limit educational attainment, employment opportunities,
and career options. When employed, AYAs often work at jobs
that do not offer benefits, including health insurance, or they may
elect to opt out of benefits because of competing expenses or a
sense of invulnerability. Even when they have health insurance,
AYA patients can lose coverage when they miss work for extended
periods of time, leave school, or age out of eligibility for insur-
ance under parental employment benefit plans. To be eligible
for supplemental security income (SSI), social security disability
insurance (SSDI), or Medicaid, AYAs must be unemployed, or if
working, earn below a federally defined threshold for substan-
tial gainful employment. Meeting eligibility requirements can
require AYAs to return to work prematurely, or remain under-
or unemployed. Neither of these means to insurance supports
successful developmental achievements for AYAs. Notably, being
unemployed is one of the most significant contributors to psy-
chological distress in young adult survivors, as it is in the general
population.14,15 Under the 2010 Affordable Care Act, however,
AYA can now access health insurance through parental benefits
until age 26, and also through Affordable Insurance Exchanges.
Individuals may no longer be denied health insurance because of
their medical history, and lifetime dollar limits on coverage are
not allowed (http://www.whitehouse.gov/healthreform). These
healthcare reforms are particularly important for AYA cancer
patients and survivors, who potentially have many life years ahead
of them but also have ongoing healthcare needs.
Body-Sexual Image and Integrity
Altered appearances, including skin discoloration, surgical scars,
medically indicated tattoos, weight changes, hair loss, and altera-
tion in hair quality can cause AYAs to feel different from peers
and can reduce self-esteem. Fears that the body will never return
to normal, of being unrecognizable to others or to oneself, or mis-
taken for the opposite sex can lead to shame, isolation, and regres-
sive behaviors.16 Patients can perceive physical changes as threats
to their well-being, which can generate anxiety. Self-image and
life outlook are experienced as worse among AYA survivors who
perceive treatment-related physical changes as moderate to severe
versus those who perceive them as mild or not at all limiting.17
A related area of stress and disruption concerns sexual devel-
opment and identity. During the transition from adolescence
to adulthood, individuals realize that they are sexual beings,
develop a sexual identity, and conceptualize reproductive capac-
ity. Not surprisingly, cancer and its treatment can affect sexual-
ity regardless of age, race/ethnicity, sexual orientation, gender,
or socioeconomic background.18,19 Treatment effects, such as
early menopause, osteoporosis, altered cognition, infertility, and
fatigue, can affect AYAs sexual behaviors, attitudes, and iden-
tity.20 Altered body image and self-esteem, changed relationships,
and other social challenges can take a toll on AYAs, for whom
exploring and developing sexual and intimate relations is norma-
tive. Effects on sexuality and intimacy are experienced not only by
AYAs during treatment and long-term survivorship, but also by
their current and future partners.21 Addressing AYAs sexuality
and intimacy concerns acknowledges the importance of develop-
ing a sense of self as a sexual being, and the formation of safe and
healthy intimate relationships. Emergence of a favorable sexual
identity depends upon acquiring accurate sexual knowledge,
developing constructive interpersonal relationships, and address-
ing body image concerns.22
The effects of cancer and its treatment on fertility are widely
reported. Yet many AYAs do not recall adequate discussion with a
health professional before treatment initiation about risk of infer-
tility or available means to decrease the risk, 23 possibly because
they were more concerned about immediate threats to life and
function than about potential late effects many years down the
road, and then only if one survived.24 For males, fertility preser-
vation (FP) options include semen cryopreservation. For females,
FP methods are more invasive and experimental and can include
in vitro fertilization (IVF), ovarian tissue cryopreservation, ovar-
ian transposition, and pharmacological protection. Options for
FP vary by acuity, treatment, gender, age, and resources. Health
 Chapter89
professionals assessments of these factors influence the extent
to which FP options are presented to patients:less than 50% of
age-appropriate males bank sperm, and less than 50% receive suit-
able education, counseling, and resources.25 Primary barriers to
FP include lack of available information and provider difficulty
in communicating about fertility, as well as providers lack of
knowledge about resources or referrals; duration of practice; spe-
cialty; lack of training to discuss FP; and lack of knowledge about
national guidelines.26 Additional barriers that can interfere with
taking advantage of FP include parental refusal, patient inabil-
ity to produce a viable sample, time constraints related to treat-
ment initiation and/or patient acuity, lack of adequate counseling,
anxiety, perception of FP as low priority, gender, and parity. 25,27
Fertility concerns are prevalent among AYA patients, can affect
their treatment decisions, heighten distress, and even compromise
adherence to cancer therapies and other medical recommenda-
tions.28,29 All AYA patients must be thoroughly informed about
the potential effects of their treatment on fertility as well as the
availability of FP options.
Existential Issues
Illness uncertainty (i.e., difficulty cognitively processing
illness-related information and events) has consistently been iden-
tified as the single greatest source of psychosocial stress for people
affected by potentially fatal illnesses like cancer.30 While a diag-
nosis can ease uncertainty about the etiology of the symptoms that
led to seeking care and ultimately the cancer diagnosis, cancer
remains widely associated with compromised future prospects,
including death. Thus, the diagnosis as well as ongoing exposure
to reminders of cancer are potentially traumatic events that can
generate intense fear and helplessness, 31 and can expand uncer-
tainty into every facet of life, particularly concerning whether
there will be a future and what that future will hold.32 Uncertainty
can be especially intense for AYAs, who typically understand the
serious nature of cancer but often lack illness experience, coping
capacities, and peers who are comfortable listening to AYAs try to
make sense of information and all that is happening to them. The
sense of personal invulnerability and ongoing brain development
that typify a substantial portion of the AYA period complicates
matters.
CONSIDERATIONS FOR PSYCHOSOCIAL
CARE AND SUPPORT FOR AYAS
Developmental theory can guide clinical interventions and
research for the AYA population. Health professionals should
be educated about how development can influence both AYA
behavior and intervention design and delivery. 33 Also guided
by developmental theory, supportive care interventions for AYA
should target typical AYA concerns:body image, economic and
emotional independence/dependence, social involvement, iden-
tity formation, and academic and career achievement. 2 Primary
intervention goals are to promote constructive coping and quality
of life (QOL).34 Interventions that aim to enhance social support
and involvement have great potential to enhance QOL. AYA QOL
has been shown to be largely a function of social support,29,35 and
so improving social support can be a means to mitigate adverse
psychosocial outcomes.35 While parents are often identified as a
primary source of support, peers who have experienced cancer
adolescents and young adults with cancer 659
can also play important roles. Interventions that aim to enhance
peer support can offer acceptance and encouragement not usually
available to AYAs20 and can promote psychological adjustment for
both AYA patients and those with whom they interact. 2
Social Support Networks
During early phases of a cancer diagnosis and treatment, friends
and family naturally rally around the patient, offering to help
around the house, run errands, drive to appointments, or sim-
ply hold her hand, tell a joke, and be there. However, during
treatment and recovery, AYAs have missed out on many of the
life experiences being shared by their non-ill peerssports and
social events, dances, and first jobs.36 Furthermore, support typi-
cally wanes over time. Friends stop calling, family members tire,
encouraging cards and letters of support stop arriving, and the
intensity and frequency of interactions with healthcare providers
can dwindle. Associated risks for poor QOL and distress are exac-
erbated as a result. Indeed, studies indicate that QOL is worse for
patients one year following initial diagnosis, 37,38 and that treat-
ment completion and transition to monitoring for cancer recur-
rence and persistent or late onset treatment complications can
be fraught with distress. 39,40 This transition can be marked by
fears of recurrence, fatigue, symptoms of depression and/or anxi-
ety disorders including post-traumatic stress disorder, concerns
about dietary intake and physical activity tolerance, and a sense of
loss related to decreased support, including that from healthcare
providers.4143
Clinical programs that include psychosocial services for AYAs
are emerging, but we lack a substantial body of evidence about
the efficacy of these services and how to tailor services on an
individual basis. For example, peer support programs offer AYAs
opportunities to build interpersonal and problem-solving skills,
an important developmental task for everyone in this age group.
Group interactions and sharing of life experiences create a sense
of community among support group members and provide AYAs
with opportunities to address mutual concerns, thus reducing
feelings of social isolation, depression, and anxiety that frequently
plague AYAs.44,45 Participation in oncology camps, adventure pro-
grams, retreats, or other social events offers experiences that can
promote the successful achievement of AYA developmental tasks.
For example, wilderness adventure and advocacy skills training
programs can boost self-image, raise confidence, and improve
independence.4448 For AYAs, making friends through peer pro-
grams is not inconsequential, as this is a critical developmental
task associated with lifelong mental health and well-being. Above
all, cancer patients with poor support networks, low self-esteem,
and low self-efficacy may have the most to gain from participat-
ing in peer support programs, in that they have been reported to
experience significantly greater improvements when compared
to patients with higher levels of self-esteem and self-efficacy.49
Paradoxically, cancer patients with the least social support, lowest
levels of cancer literacy, and most avoidant coping styles have the
lowest reported interest in psychosocial care, despite having the
most to gain.50
As a computer-, electronics-, and music-savvy generation, AYAs
express needs and desires for age-appropriate Internet-based
information and opportunities to interact with peers via inter-
active websites and games.4,51,52 Satisfying these AYA needs via
computer games, videos, and music has been demonstrated to be
660 Section XIV survivorship
associated with improved coping capabilities,53 resilience, 54 and
treatment adherence. 55,56 Specifically, interventions delivered
through these media can encourage young patients and survi-
vors to actively participate in their health-related decisions and
care56,57 and also can improve confidence in communications
with healthcare providers,58,59 thereby promoting autonomy and
independence. The major thrust of these interventions is that they
represent activities intended to bolster the support that AYAs
receive through existing, as well as new, social networks.
Coping and Behavioral Self-Management
Work by Merluzzi and colleagues 60 suggests seven behavioral
coping tasks required of cancer patients:(1)maintaining activity
and independence, (2)seeking and understanding medical infor-
mation, (3)managing stress, (4)self-caring for treatment-related
side effects, (5)acknowledging the disruptive influence of cancer
on ones life, (6)maintaining emotional well-being, and (7)seek- most critical during diagnosis and initiation of treatment. In con-
ing support. Studies suggest that supportive care resources pro-
mote coping capabilities,6163 and some link improved coping to
improved QOL.61,64 These results raise the possibility that coping
capabilities mediate the effects of formal and informal support
resources on QOL outcomes. Promoting formal or informal sup-
port systems (in terms of size, perceived usefulness, or both) can
enhance coping capabilities, which in turn may improve QOL and/
or distress. Another possibility is that coping capabilities moder-
ate the effects of support such that individuals with low coping
capabilities derive greater benefits from enhanced support (e.g.,
someone to drive them to appointments, therapy to boost rela-
tionship with a spouse/partner) than do those who initially have
more constructive or higher levels of coping. For example, among
adolescents who participated in a therapeutic recreation camp,
statistically significant improvements in coping capability were
observed only in those with low coping capability pre-camp.65
In a study examining the effects of a psycho-educational group
intervention, patients who entered the intervention with lower
coping capabilities benefited more in terms of QOL than did other
participants.49
Historically, empirical investigations of psychosocial adjust-
ment in AYAs have tended to emphasize psychopathological
responses (e.g., mood disorders, anxiety, depression, and post-
traumatic stress symptoms).15,6668 Life-threatening medical
conditions, such as cancer, can negatively affect AYAs mental
health and potential to achieve developmental tasks.36 Symptoms
of post-traumatic stress (PTS) have been reported among young
adult survivors of childhood cancer. For example, Hobbie and
colleagues have reported that 20.5% of their childhood cancer
survivor population met criteria for lifetime post-traumatic stress
disorder (PTSD).66 Kwak et al. reported that 39% and 44% of
AYAs aged 1439 years at diagnosis reported moderate to severe
levels of PTS at 6 and 12 months post-diagnosis, respectively.69 An
emerging body of literature shows that AYAs also report positive
(i.e., beneficial) consequences of their cancer experience, such as
having greater empathy toward others, increased abilities to cope
with life challenges, improved personal relationships, new values
and priorities, clarity of future plans and career path, and health
competence.7073 Barakat and colleagues reported that nearly 85%
of AYA survivors of childhood cancer reported at least one posi-
tive outcome from their cancer experience.72 Thus, interventions
should be aimed at not just preventing, reducing, or eliminating
psychiatric symptoms or maladjustment but also allowing for pos-
itive perspectives that can be psychologically protective.
Survivorship
Adolescence and emerging adulthood are developmental stages
marked by rapid changes in cognitive and emotional growth.
Likewise, the first two years following a diagnosis of cancer com-
prise a wide range of stages of adjustment for AYAs that are not
yet well understood. Initially conceived as seasons of survivor-
ship, 74 a survivorship continuum of care conceptualizes phases of
diagnosis, treatment, and survival (regardless of however long one
may live). It is at these times when biomedical and psychosocial
outcomes and associated needs vary based on myriad physiologi-
cal, biological, psychological, social, and environmental condi-
tions influencing the host-patient. For example, one could argue
that the need for information about cancer and its treatment is
trast, the fears and distress experienced by many adult patients as
they transition from treatment to survival suggest a greater need
for information and other forms of support relative to the other
phases. In the case of pediatric cancer, long-term survivors have
been observed to be significantly more likely to be unemployed
or of lower levels of educational attainment when compared to
sibling controls, thereby suggesting that vocational rehabilitation
or other such social interventions that promote reintegration into
school or work may be most needed during the transition from
treatment to survivorship.7577
Jacobs and Hobbie78 suggest that long-term follow-up care for
adults who have been treated for cancer should include regular
assessment and information regarding late effects, emphasizing
QOL and health maintenance and promotion. AYA patients could
also benefit from a QOL/health maintenance and promotion per-
spective. An age-appropriate environment that conveys hope and
offers age-relevant information that can empower AYA patients,
starting at diagnosis, to begin to manage potential late effects (e.g.,
access FP to manage risk of infertility) may be a means to reduce
uncertainty and maximize treatment outcomes. 2,79,80 Ill-timed
and unsuitably detailed information might increase distress.
Therefore, psychosocial assessments of AYAs should include eval-
uating readiness, cognitive capacities, and preferences regarding
level of detail and delivery modalities.20
CONCLUSION
The greatest difference in the management of AYAs is the sup-
portive care, particularly psychosocial care, they require. These
patients have special needs that are not only unique to their age
group but also broader in scope and more intense than those at
any other time of life (p.19).81 AYA patients face distinct devel-
opmental tasks that can be challenged by cancer. Psycho-oncology
healthcare professionals must cultivate awareness and sensitivity
to the tasks for this age so they can best assist AYA patients to
achieve normalcy and healthy maturation throughout the cancer
experience.
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 SECTIONXV
Professional Education
and Building Supportive
Care Programs
90 Principles of Communication Skills Training
in Cancer Care Across the Life Span
and Illness Trajectory 665
David W.Kissane and Phyllis N.Butow
91 Building Supportive Care Programs
in a Time of Great Opportunity 673
Matthew J.Loscalzo, Barry D.Bultz,
Karen Clark, and Paul B.Jacobsen
92 Oncology Staff Stress and
Related Interventions 679
Mary L.S. Vachon and Phyllis N.Butow
93 Training Psychiatrists and Psychologists in
Psycho-Oncology 684
Michael A.Hoge and Andrew J.Roth
94 Educating and Training Professional Social
Workers in Psycho-Oncology 689
Victoria Kennedy, Kathryn M.Smolinski,
Yvette Coln, and JamesZabora
95 Education of Nurses in Psycho-Oncology 695
Terry A.Badger, Barb Henry, and Ruth McCorkle
96 Education of Chaplains in
Psycho-Oncology 700
Stephen D.W. King, George Fitchett,and
Anne Vandenhoeck
97 Training and Education of
Patient Advocates 705
AfafGirgis
98 The Engaged Patient:The Cancer Support
Communitys Integrative Model of
Evidence-Based Psychosocial Programs,
Services, and Research 710
Mitch Golant, Joanne Buzaglo, and Kim Thiboldeaux
99 Collaborative Psychosocial Oncology
CareModels 717
Jesse R.Fann and JenniferSexton
 CHAPTER90
Principles of Communication
Skills Training in Cancer
Care Across the Life Span
and Illness Trajectory
David W.Kissane and Phyllis N.Butow
INTRODUCTION
Given the compelling evidence of the importance of doctor-patient
communication to patient outcomes, there is a burgeoning inter-
est in developing and evaluating effective ways of improving
doctor-patient communication. Communication skills training
(CST) research has shown convincingly that clinician behaviors
can be improved, with potential benefits flowing to better patient
outcomes, global satisfaction with care, improved fulfillment in
clinicians, and ultimately enhanced quality of clinicalcare.
In this chapter, we outline evidence for the efficacy of CST in
cancer care, provide a core curriculum for CST in oncology that
traces the illness trajectory and is sensitive to all phases of the life
span, and we discuss principles in achieving competence in facili-
tators. We also examine the evidence that supports the recording
of key consultations, the use of decision aids and question prompt
lists, and finally we review training that improves patient com-
munication in the clinical encounter.
MODELS OF COMMUNICATION
SKILLSTRAINING
Several models of physician-patient communication have served
as conceptual frameworks for CST. One review of these models
and the extant literature highlighted the need to (a)address com-
munication challenges across the trajectory of illness; (b)make
explicit and unambiguous the skills necessary to meet these chal-
lenges; and (c)provide a direct linkage between teaching curricu-
lum and assessment.1 ACST curriculum typically breaks up the
segments of consultations into modules (e.g., discussing progno-
sis, or transitioning to palliative care) that deal with specific chal-
lenges for training purposes and are ultimately combined in the
clinical setting to appropriately address patient needs. Figure 90.1
illustrates the Comskil conceptual model developed at Memorial
Sloan-Kettering Cancer Center that specifies a communication
goal, the sequence of strategies or a priori plans to achieve this,
with the related verbal skills and process tasks that support the
clinician accomplishing this. Within this model, communication
skills are discrete verbal utterances that can be named and prac-
ticed (see Table 90.1), while process tasks are the nonverbal behav-
iors that create an environment for effective communication. The
clinician constantly appraises any cues offered by the patient for
information or support, as well as being sensitive to any barri-
ers that impede open communication. Programs of CST have a
well-trodden format involving learner-centered identification of
the clinical challenges, potential approaches to address these, dis-
play of an exemplary video to model effective practice, and then
facilitated role-play with actors simulating patients to practice rel-
evant strategies, skills, and tasks that have been shown to improve
outcomes.
EFFICACY OF COMMUNICATION
SKILLSTRAINING
A 2013 Cochrane review of CST, which included only random-
ized controlled trials, identified 15 studies involving 1147 health-
care practitioners (HCPs)536 doctors, 522 nurses, and 80 mixed
HCPsand included a meta-analysis of 10 studies. 2 The review
found that CST increased the use of open questions (moderate
evidence) and empathy (strong evidence) and decreased presenta-
tion of only facts. There was no impact of CST on HCP burnout,
patient satisfaction, or patient perception of HCPs communica-
tion skills. This review was unable to determine whether CST
effects are sustained over time, whether consolidation sessions
are necessary, and which types of CST programs are most likely
towork.
Similarly, Barth and Lannen (2011) reported a moderate effect
size (ES = 0.54 [0.27. 0.81]) of CST on improving communica-
tion behaviors in oncology clinicians from a meta-analysis of
13 studies, but failed to see this transfer into patient-reported
666 SectionXV professional education and building supportive care programs

Goal of Communication
Module
Specific goals to be achieved in each module of the curriculum
(e.g. Breaking bad news, Discuss survivorship, Transition to
palliative care)

Monitor Communication
barriers Monitor cues
strategies

Observe signs of Clinically meaningful sequence Clinician appraises

blocks of steps to achieve goal patient signs

Key skills Process tasks

Behaviors that create supportive

Discrete verbal utterances
environment

Figure90.1 Key components of communication skills training modules. The consultation is broken up into teachable segments that have a clear communication goal,
which is accomplished by following strategies that are, in turn, achieved by the use of skills and processtasks.

outcomes (ES=0.10 [-0.03, 0.23]).3 An encouraging finding was
the meta-analysis of the impact of CST on patient adherence to
treatment recommendations, the odds of patient adherence being
1.62 times higher when a physician is trained.4 Brown and col-
leagues also saw an increase in shared decision-making and
positive attitudes toward trials among patients of 10 trained
oncologists5, which is promising given the poor accrual rate seen
across oncology units. Overall, however, there remains a need for
further research to clearly establish whether CST can realize the
benefits it promises.
There is some evidence that the dose of training moderates
the extent of change in clinicians communication behaviors.2
Fallowfield, Lipkin, and Hall compared 1.5 and 3-day training
programs for oncologists in the United Kingdom and found a
dose effect in self-evaluated improvement in skills.6 Razavi and
colleagues in Belgium, both in training physicians and nurses,
showed that consolidation sessions significantly increase the
retention of skills.7,8 Following a basic 2-day program of CST and
using a wait-listed design, Razavi exposed subjects to a further
18 hours of consolidation CST after their initial 19 hours of basic
training, and found significant increases in use of open ques-
tions, empathic acknowledgments, reality testing utterances, and
negotiated agendas.7 Astaggered approach to learning, wherein
skills are initially cultivated, practiced in the real clinical world
for a time, then reinforced with further role-play, consolidates the
gains as further modules are studied.
Overall, these studies demonstrate that skills can be taught, and
that dose intensity is probably critical to their maintenance.
CORE CURRICULUM FOR
COMMUNICATION SKILLS TRAINING
INONCOLOGY
CST is initially taught generically in medical schools to guide the
opening and closing of clinical interviews, taking a history of the
present illness, past medical and social history, guiding discus-
sion of the provisional diagnosis, ordering of investigations, and
arranging potential management plans. As doctors enter resi-
dency programs, applied CST becomes discipline-specific as cli-
nicians grapple with more sophisticated issues and predicaments.
In cancer care, a core curriculum covers the breaking of bad news;
how to discuss prognosis, develop shared decision-making, and
introduce survivorship; how to respond to difficult patients who
are grief-stricken or existentially stressed; how to run a family
meeting, transition patients to palliative care, and discuss death
anddying.
Breaking BadNews
Whenever there is a gap between the patients expectations and the
medical reality, the exchange of information will be experienced
as bad news. The diagnosis of cancer, its recurrence or disease
progression, the results of biopsies and multiple tests, outcomes of
treatments, surveillance in survivorship, and end-of-life carea
myriad of opportunities occur across the disease spectrum in
which unwelcome news can be delivered. Patients have a right to
receive as much information as they desire, and its delivery needs
to be tailored to suit the individual and his or her family within
their own cultural milieu.9 Aguideline for discussing bad news is
presented in Table90.2.
Discussing Prognosis
Two systematic reviews of over 100 studies conclude that most
patients want detailed information about their prognosis, includ-
ing the extent of their disease, chance of cure, risk of recurrence,
and life expectancy, as well as the potential effects of the cancer
and its treatments on their life.10,11 Asmall minority prefers not
to know. Therefore, the approach to discussing prognosis must
be tailored to the needs of each individual and his or her family.
Message framing preferences also differ by individual, their edu-
cation, and culture so that selection of words, numbers, graphs,
 Chapter90 principles of communication skills training 667

Table90.1 Types of Generic Communication Skills Used in Communication Skills Training

Broad Skill Category Description or Example

Establish consult framework
Declareagenda
Invite patientagenda
Negotiate sharedagenda
Takestock
Permission to move on
Information organizationskills
Preview material
Categorize or structure
Summarize
Checkingskills
Clarify understanding
Check preferences
Questioningskills
Open orclosed
Linear or circular
Empathicskills
Acknowledge
Normalize
Paraphrase
Encourage expression
Apologize
Affirm coping
Shared decision-makingskills
Reinforce joint decision
Partnership statement
Offer decisiondelay
Express willingness to help
My goal for today is....
What issues or concerns do youhave?
Let us take these issues in this order.
Has that clarified this concern?
Can we move now to discuss...?
Present an initial overview of the range of material
Rank material numerically
Review key points thus far
Ask patient to summarize what he or she has understood
Ask patient how much detail he or she wants
Asks for the story versus queries a specificitem
Direct query to one individual versus invite perspectives of several parties about a third person
You seem sad...
Your anger is understandable...
If Iunderstand correctly, you feel...
Tell me more about these feelings
Iam sorry that this has been so tough foryou
I admire the courage you display in dealing with this
Emphasize patients choice and your support forthis
Let us work out together what is best foryou
Allow time to consider choice and discuss withfamily
Call back with questions; return to discuss further

bar charts, and 100-person diagrams can also be guided by the
patient.12,13 Use of median survival, interquartile range, best case
scenario reflected in the 90th percentile, and worst case scenario
in the 10th percentile can be considered. Astepwise disclosure is
often used across several consultations, with repeated checking of
the patients understanding and need for further information.14
See Table 90.2 for a guideline for discussing prognosis.
Reaching a Shared Treatment Decision
Strategies for reaching shared treatment decisions (see Table90.2)
need to be sensitive to lifestyle and cultural aspects, with evidence
of greater satisfaction when these have been recognized.15 The
recent emphasis on patient autonomy does not mean that clini-
cians should be passive and withhold their own recommendation
as to the optimal treatment choice.
Introducing Survivorship
More cancers are being cured, but with long-term and late effects,
such as cardiovascular disease, infertility, and secondary cancers,
which may arise from the primary treatment. The introduction of
survivorship care plans as a means to optimize well-being and pre-
ventive care bring further communication challenges in checking
patient understanding and building a new health literacy in con-
ceptualizing the risks associated with becoming a survivor.
Responding to Difficult Emotions
So-called difficult encounters tend to be those with intense
and highly charged emotions, most easily exemplified by the
angry patient, but also including anxiety and grief, which may
be difficult for caregivers to manage. The goal is to understand
the development of the distress, respond empathically to the
emotions involved, and generate support and problem-solving
where appropriate.16 An apology is always helpful if a mistake
has beenmade.
Running a Family Meeting
In the conduct of a family meeting, co-facilitators need to iden-
tify their own leadership roles and agendas before starting the
meeting so as to have a coordinated approach to multidisciplinary
needs. Atypical sequence of strategies and exemplary comments
are laid out in Table90.3.
A different set of questioning skillscircular questionsare
used to facilitate family discussion. These involve asking fam-
ily members for their opinion as to how others in the family are
668 SectionXV professional education and building supportive care programs
Table90.2 Integration of Strategies in Breaking Bad News, Discussing Prognosis, and Shared Decision-Making
Module Strategies
Breaking bad news 1. Establish the consultation framework
2. Tailor the consultation to the patients needs
3.Provide information in a way that it will be
understood and recalled
4. Respond empathically to emotion
Shared 5.Check readiness to discuss management
decision-making options and resultant prognosis
6. Establish the physician-patient team.
7. Present established treatment options.
8.Discuss patients values and lifestyle factors
that may impact on the standard treatment
decision.
9.Present a clear statement of the recommended While you consider your preferences, Iwant to make clear my recommendation
treatment option and invite patient choice. to you and why Ithink this would suit you the best.
Discussing prognosis 10.Ascertain the patients need for prognostic
information
11.Negotiate the type and format of prognostic
information
12.Provide information in a manner that is
sensitive to the patients needs and promotes
hopefulness
13.Respond empathically to emotion
14.Check understanding and close the
consultation
coping, taking turns to collect viewpoints from all present.17
Reflexive questions explore potential hypotheses and invite fam-
ily reflection, while strategic questions pose potential solutions,
including hypothetically directed, future-oriented questions that
may include the possibility of death for the ill family member. The
conceptual model that underpins these questioning skills is illus-
trated in Figure 90.2, with the goal of shifting family comprehen-
sion from obscurity to transparency as any meeting unfolds.
Family meetings contribute across the life span, where a child may
be going to lose a parent to cancer, adolescents might be affected by a
sibling with cancer, or a young nuclear family member may need to
care for grandparents at the other end of the life cycle.18 Cultural sensi-
tivity is vital as questions explore openness of communication within
the family, patterns of mutual support, familial risk, and ways to man-
age differences of opinion or frank conflict among the members.
Examples
Today we have the results of your pathology. Before we turn to the results, do
you have any issues or concerns that youd like to put on our agenda?
Id like to make sure you understand the reasons for these tests.
When Igive you the results, guide me with how much information youd like...
an overview, the important facts, or as much detail as possible.
Im afraid Ive got some bad news foryou.
The pathology shows that the cancer has spread into nearby lymph glands.
This is very upsetting news for you. Tears are normal. Its so disappointing, isnt it?
We have good treatments for your situation. It can be helpful to talk about these
so that you understand how these will impact upon your future outlook. Ican tell
you about these when you are ready, but some patients like a little time.
Some people like to make the treatment decision on their own, others want to
involve their family and doctor. What is your preference?
There are three treatment options you need to consider:surgery, radiation, or
watchful waiting.
In considering potential side effects, it can be helpful to work out which might
trouble you the most:incontinence, sexual dysfunction, or rectal bleeding?
Are you interested in learning about what risks exist for your future?
Tell me your preferences for the level of detail you like? Some people like
statistics, others dont.
What if we discuss your chances of a cure first and then your chances of getting
a recurrence?
In this diagram of 100 people, here is the group that wed expect to get
a recurrence without chemotherapy, and see the change in this group if
chemotherapy is given.
I sense that you are worried by this prognosis? Tell me how you feel.
Can you summarize for me what youve learned so that Ican see how much
youve been able to takein?
Remember that you can take some time to make this decision. Please call me if
you have further questions.
Lets arrange for...
Transitioning to Palliative Care and End ofLife
Understanding each patients concerns, goals, and values
requires exquisite sensitivity as the clinician seeks to transition
the person toward the palliative approach. Bringing the patients
views into consensus building about the goals of care ensures a
patient-centered approach.11 Checking each patients understand-
ing of his or her prognosis and changes in well-being are crucial.
Permission is obtained to move toward a discussion of death
anddying.
Working with Interpreters
Given the importance of health disparities in culturally and lin-
guistically diverse communities, effective communication via a
professional interpreter is a crucial skill. Seating the interpreter

Table90.3 Conducting a Family Meeting
Strategies
1. Planning and prior setup to arrange the family meeting.
2. Welcome and orient the family to the goals of the family meeting.
3.Check each family members understanding of the illness and its
prognosis.
4. Check for consensus about the current goals of care.
5.Identify family concerns about their management of key symptoms Are any symptoms proving difficult to controlwell?
or care needs How might we help you more in your caregiving role?
6. Clarify the familys view of what the future holds.
7. Clarify how family members are coping and feeling emotionally
8.Identify family strengths and affirm their level of commitment
and mutual support for each other
9.Close the family meeting by final review of agreed-upon goals
of care and future plans
just behind the patient, as illustrated in Figure 90.3, allows for the
interpreters voice to be readily heard by the patient without the
latter breaking eye contact with the clinician to look at the inter-
preter.19 This empowers better recognition of emotional cues and
empathic responsiveness. Structuring sentences with short sound
bites makes simultaneous translation more achievable and fosters
an interactive dialogue.
FACILITATOR TRAINING PRINCIPLES
A competent facilitator provides the foundation for success-
ful communication training. The facilitators goal is to achieve a
consistent and reliable experience for learners across role-plays,
which have been found to be an efficient way of promoting learn-
ing at both intellectual and emotional levels. The aim is to create
a learner-centered experience, and this is achieved by prioritizing
the learners agendas andneeds.
The basic teaching tasks that facilitators use in role-play fall
into the following categories:(1)start with orientation, creating
safety; (2)structure the groups learning with individuals nomi-
nating learning goals; (3)run the role-play; (4)facilitate the feed-
back process, balancing affirmation of strengths with constructive
ideas for improvement; (5)rerun the role-play to compare varied
approaches and the use of new skills; and (6)close the session.20
These tasks work equally well in small groups and larger fish-
bowl settings.
Chapter90 principles of communication skills training 669
Examples
I want to invite you to a family meeting to discuss the care of your relative.
We find it very helpful to meet together to discuss the goals of care, key issues and
concerns, and see how care provision is going.
Can you tell me its name and just how serious you understand this illness tobe?
What concerns do you have about this illness?
What are our goals of care in treating this illness?
Can Iask if your affairs are in order?
Have you appointed a health proxy and an advance directive?
Who does Mom talk to about this illness?
Who does Dad talk to about this illness?
Whom, if anyone, do each of you hold concerns about?
How effective is your teamwork? Can you talk openly about the cancer? What
prevents you as a family from talking more freely about this illness?
Do disagreements present any problems?
Where do you draw resiliencefrom?
What traditions guide your decisions?
Which cultural norms matter to your family?
Let us review the goals of care and family concerns that weve discussed during this
meeting.
Going forward, the next steps are...
DEVELOPMENTAL AGENDAS IN
COMMUNICATION SKILLS TRAINING
The future of communication skills training includes the devel-
opment of many modules focused on optimal framing and com-
munication approaches to specific clinical issues. Examples of
these include the discussion of unanticipated adverse events in the
operating room, promotion of treatment adherence, discussing
complementary and unproven therapies, and how to respond to
queries based on information gleaned from the Internet. Research
into the incorporation of interactive, paper-, and web-based deci-
sion aids to promote understanding about complex treatments is
rapidly enriching the information provided to patients.
DECISION AIDS AND QUESTION
PROMPTSHEETS
DecisionAids
Decision aids (DAs) have been developed to help patients make sense
of complex information and to arrive at a shared decision by clarifi-
cation of patients values and treatment preferences. Typical infor-
mation includes material about the disease/condition; probabilities
of outcomes personalized to individual risks; pros and cons of all
treatment options; guidance about the steps of decision-making
and how to communicate choice to others; and values clarification
670 SectionXV professional education and building supportive care programs

OBSCURITY LINEAR QUESTIONS

Limited insight and ( Joining, clarifying
understanding of self individualss goals)
and others

es sol
ib iliti uti
on
poss alt s
s ern
nda ati
age ves
ns vie
cer wp
con oin
ts
FUTURE
PAST (Influencing
(Learning directions/choices)
about) Constructivist
stance in family
situ meetings
ati
on
lity
rea
co
me nte ces
ta xt uen
po infl s
siti
on esi
oth
hyp

TRANSPARENCY
Shared understanding
CIRCULAR QUESTIONS by all
(Co-constructing understanding by asking family
members questions about a third person)

Figure90.2 Theoretical framework underpinning questioning skills in running a family meeting. Circular questions promote deeper family understanding and
informed choices by linking family concerns with the clinical reality, within the familys social context, and by considering the possible solutions through observation of
the metaposition.

exercises. One illustration is a clinical trialspecific decision aid to
help patients with trial enrollment.21 The most recent Cochrane
review concluded that there is strong evidence that DAs are effective
in improving knowledge and reducing decisional conflict without
increasing anxiety, and moderate evidence that they increase patient
involvement and improve accurate risk perception.22 Evidence and
consensus-based standards are applied to DAs to ensure that they
are high quality, unbiased, and optimally effective.23
Question PromptLists
Active patient participation is in part characterized by patients
information-seeking behavior, such as asking questions. Patients
who ask questions of the doctor are able to change the focus of the
consultation and control the duration and amount of information
provided. One method that has been shown to increase question
asking in general, surgical, and palliative oncology consultations
is the question prompt list (QPL). QPLs consist of sample written
questions separated into content categories, for example, diagno-
sis and prognosis. Arecent review of DAs and QPLs concluded
that QPLs are as effective as DAs in improving patient outcomes,
are cheaper to produce, and are easier to maintain.24
COMMUNICATION AND THE INTERNET
Between 31% and 60% of patients or caregivers report having
used the Internet to search for information about cancer. 25 The
Internet has significantly transformed the way patients meet their
health-related information needs, as it provides patients ready
access to information that was previously difficult to obtain.
This has also had a leveling effect on the power imbalance in the
doctor-patient relationship, specifically in terms of expert power.26
In recent decades, oncologists have had difficulty handling
discussions about Internet information, especially when patients
dispute medical information or become confused by too much
or conflicting information. Lack of concordance about Internet
information can prolong consultations. Oncologists have
expressed concern with the accuracy of some cancer-related
Internet information.
To help manage these difficult conversations, Bylund and
Gueguen 26 suggest six strategies for clinicians: (1) explore the
patients experience with Internet information; (2) respond
empathically to the patients experience; (3) acknowledge the
patients efforts; (4)correct any misunderstandings; (5)provide
guidance; and (6)reinforce the clinician-patient partnership.
RECORDING IMPORTANT CONSULTATIONS
Empirical studies have revealed how disappointingly little informa-
tion patients may recall when the threat of a new cancer diagnosis
occurs, and distress prevails and then blocks concentration on what
the clinician is saying.27 A series of seminal studies have exam-
ined the benefits and perceptions of audio-recording important
 Chapter90
PARALLEL SEATING
Interpreter
Patient
Clinician
Simultaneous translators voice in patients ear
as clinician speaks
Privileges the clinician-patient conversation
Figure90.3 Positioning of the interpreter to optimize the clinician-patient interaction. Rather than a triangular seating arrangement, the interpreter is positioned
just behind the patient, where his or her voice is readily heard, but the interpreters head can be lowered to discourage direct patient to interpreter conversations, thus
privileging the clinician-patient interaction.
consultations. The patient and family can replay this later and steadily
integrate information that is crucial to their understanding of the ill-
ness and its potential treatment. Rather than audio-recordings being
later used later in litigation, they have been found to protect clini-
cians by providing evidence that risks were fairly discussed along-
side potential benefits of any proposed treatment.27
PATIENT COMMUNICATION TRAINING
Improving clinicians communication is necessary, but not sufficient
to achieve the best possible communication in a clinical encounter.
The clinician-patient interaction is a dynamic, socially constructed,
and reciprocal process that relies on at least two participants. Both
physician and patient need to be actively involved and competent
communicators. Patients may face many challenges in consultations,
including interruptions, unconscious blocking behaviors by the cli-
nician, cultural biases, lack of empathic communication, poor toler-
ance for patients desires to talk about unproven therapies or Internet
information, and a lack of physician-patient concordance.
The limited literature on comprehensive patient communica-
tion training interventions is encouraging regarding the improve-
ment of patients active participation and adherence to medical
treatments.28 Bylund and colleagues propose the following goals
for future research:(1)determining the most effective methods
of patient communication training, (2)identifying which popula-
tions can benefit most from training, and (3)exploring the syner-
gistic nature of physician and patientCST.28
CONCLUSION
Effective and compassionate communication is a core component
of a medicine that heals illness rather than solely treating dis-
ease. CST enhances patient satisfaction, reduces worry, improves
principles of communication skills training 671
TRIANGULATED SEATING
Patient
Clinician Interpreter
Sequential conversations between points of triangle
Privileges interpreter's contribution
understanding, promotes treatment adherence, and reduces liti-
gation. The recording of key consultations is becoming more com-
monplace. Use of question prompt sheets and decision aids will
continue to develop as research explores optimal ways to frame
message delivery. Psycho-oncology as a discipline helps the entire
treatment team by actively teaching communication skills to
healthcare professionals and patients, thus enriching the quality
of the care we all deliver as healers.
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Clin Oncol. 2003;21:31413149.
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8. Razavi D, Delvaux N, Marchal S, etal. Does training increase the use
of more emotionally laden words by nurses when talking with cancer
patients? a randomised study. Br J Cancer. 2002;87:17.
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Breaking bad news about cancer:patients preferences for communi-
cation. J Clin Oncol. 2001;19:20492056.
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Communicating prognosis in cancer care:a systematic review of the
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12. Clayton JM, Butow PN, Arnold RM, Tattersall MH. Fostering coping
and nurturing hope when discussing the future with terminally ill
cancer patients and their caregivers. Cancer 2005;103:19651975.
13. Hagerty RG, Butow PN, Ellis PM, etal. Communicating with realism
and hope:incurable cancer patients views on the disclosure of prog-
nosis. J Clin Oncol. 2005;23:12781288.
14. Clayton JM, Hancock KM, Butow PN, etal. Clinical practice guide-
lines for communicating prognosis and end-of-life issues with adults
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Med J Aust. 2007;186(12 Suppl):S83108.
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16. Philip J, Gold M, Schwarz M, Komesaroff P. Anger in palliative
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18. Gueguen J, Bylund CL, Brown, R, Levin TT, Kissane DW.
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Interviewing patients using interpreters in an oncology setting:initial
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DW. Training faculty to facilitate communication skills train-
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 CHAPTER91
Building Supportive Care
Programs in a Time of
Great Opportunity
Matthew J.Loscalzo, Barry D.Bultz,
Karen Clark, and Paul B.Jacobsen
INTRODUCTION
Supportive care focuses on maximizing the full benefits of bio-
psychosocial care. Supportive care programs are organized in a
variety of ways based on the focus of the setting, staffing levels,
access to resources, and institutional philosophy. Traditionally
such programs have been composed of a number of collaborat-
ing professionals in separate departments primarily defined by
professional training. The authors have a particular perspective
(based on close to 100 years of combined experience) that sug-
gests changing this model to one that best addresses performance
outcomes that patients and families themselves would value. The
authors also see the quality of the services provided by supportive
care programs as inextricably linked to the mental and physical
health of the professionals who commit themselves to thisfield.
The rising costs of healthcare services are of deep concern
to virtually every nation. A number of factorsincluding the
increasingly large number of elderly people living longer, seden-
tary lifestyles becoming the norm across all age groups, the obe-
sity epidemic, degradation of the environment and the resulting
presence of carcinogenic substances, and greater awareness of
and interest in cancer screeningwill all increase the numbers
of people diagnosed, living with, and dying from cancer. In fact,
according to the World Health Organization (WHO), internation-
ally new cases of cancer are estimated to jump from 11.3million
in 2007 to 15.5million in 2030, and the number of global can-
cer deaths is projected to increase 45% from 2007 to 2030 (from
7.9million to 11.5million deaths).1
Along with the dramatic increase in cancer cases, increased
cancer deaths, greater survival rates, and increased cancer aware-
ness, there is a serious workforce shortage presently, which will
only become worse in the near future, and this is particularity
true of cancer clinicians.
Within this context, both nationally and internationally, the
need for tailored, resource-efficient, integrated supportive care
services will only increase. The demands and expectations for
supportive care services will also increase as healthcare systems
attempt to provide quality services that are also resource-realistic
within the individual setting. Therefore supportive care services
must be highly adaptable, carefully integrated, evidence-based
wherever possible, and tailored to the unique values and needs of
the populations served (patients and care providers). Performance
outcomes need to be consistent with what patients, families, and
local communities themselves perceive as havingvalue.
In this chapter, the authors selectively focus on essential (and
offer some provocative) elements to building and growing sup-
portive care programs of excellence, anticipating how to best
position these programs. We will briefly discuss the evidence for
supportive care, the supportive care model, integrated interdis-
ciplinary teams, the importance of biopsychosocial screening,
staff leadership models, and how all of these elements can be used
together to build supportive care programs.
Readers interested in acquiring a more general and founda-
tional guide to building supportive care programs are referred to
earlier publications by the authors2,3 and to an National Institutes
of Health/National Cancer Institute (NIH/NCI) training pro-
gram website (www.supportivecaretraining.com).
EVIDENCE FOR SUPPORTIVECARE
Numerous chapters (see Chapters5560) in this volume review
the evidence demonstrating the beneficial effects of providing
psychosocial care and symptom management to people affected
by cancer. Much of this evidence comes from clinical trials in
which patients are randomized to receive specific forms of care
and are studied under carefully controlled conditions. Arecent
meta-analysis provides a succinct summary of the evidence from
these randomized trials.4 The authors identified 198 studies of
psychosocial interventions that collected data from over 22,000
people with cancer. The main findings were that small-to-medium
sized effects were evident for both individual and group forms of
psychotherapy as well for psycho-education. The most interesting
674 SectionXV professional education and building supportive care programs
finding was that studies which pre-selected participants according
to increased distress produced large sized effects. The finding is
important because it provides support for current clinical practice
guidelines recommending that patients be screened for distress,
with subsequent evaluation and referrals for psychosocial care
reserved for patients experiencing moderate to severe distress.5
Additional evidence supporting a screening and referral model
comes from several recent studies that are among the first to eval-
uate integrated models of psychosocial care delivery in oncology
settings. Anotable example is a study by Strong etal.6 in which
patients with major depressive disorder identified by screening
were randomized to receive either usual care or a nurse-led inter-
vention that included up to 10 sessions of problem-solving therapy
plus communication with the patients physician about the man-
agement of depression. Findings showed greater reductions in
depressive symptomatology in the intervention group as well as
greater evidence of remission of major depressive disorder in the
intervention group compared to the usual care group (29% and
14%, respectively). Studies of this type are extremely useful since
they yield evidence that can directly inform the organization and
delivery of supportive care. Moreover, as studies of integrated care
models accumulate, they can be used to formulate clinical prac-
tice guidelines and pathways based on evidence rather than the
consensus that supports many current recommendations.
SUPPORTIVE CARE:THEMODEL
The struggles with language around terms such as
psycho-oncology, psychosocial oncology, palliative care,
and supportive care are not new, but they do matter. Similarly,
there is disagreement and debate about the ideal composition of
the multidisciplinary team. At least some of the conflict is around
profession-centric protectionism that was and is a barrier to
patient- and family-centered care. Professional jockeying is not
confined to any single discipline but it is a toxic barrier to the inte-
gration of programs that are patient- and family-centered rather
than profession-centric. It does appear that there is an emerging
consensus that supportive care is a term that is both inclusive
and readily understandable by patients and their families and
is most acceptable to the disease-directed physicians who make
most of the referrals.7 In reality, most supportive care programs
are created not by definitions but emanate organically from the
culture of the setting, by courageous leaders, based on perceived
needs, level of resources, and lived values. The key elements to
supportive care programs are listed in Table91.1.
A functional definition for supportive care that is patient- and
family- centered2 is:...provision of compassionate expertise by
an interdisciplinary team to enhance care for patients and fami-
lies along the disease continuum by helping them manage symp-
toms, address psychosocial needs and find meaning. This is best
achieved by . . . biopsychosocial screening, counseling, multi-
modal symptom management, tailored psychoeducational pro-
grams, advocacy, skills training, consultations and education of
colleagues and a sound business model. All are essential elements
of a supportive care program within a context of interdisciplinary
compassionate experts.2
Although supportive care teams will vary widely, the optimal
team will be composed of, but not limited to, the following com-
passionate experts:healthcare administrators, pain and palliative
Table91.1 Key Elements of a Supportive Care Program
Patient and family evaluation (beyond satisfaction) for all programs and
professional services
Relevant in any setting, from the community to the academic center
Compassionate expertise
Team focused
Continuity across settings
Honest and open communication as foundation of all relationships and
interactions
Whole patient and family centered
Evidence-based (whenever possible)
Inherently disruptive to a fragmented system and potentially transformative
to healthcare system (culture change)
Identifying and leveraging all relevant resources
Business matters (creating a business plan)
Biopsychosocial screening
Value based
Integrating clinical care, research, and education
Clarifies primary constituent and tailored (added value needed for
transformation)
care physicians and nurses, cancer survivor volunteers, patient
educators, pharmacists, psychiatrists, psychologists, social work-
ers, and spiritual care counselors. Needless to say, there are nat-
ural linkages to other professionals (especially case managers,
physical and occupational therapists, navigators, and dietitians),
all of whom would logically fall within the supportive care team
to maximize quality and efficiency.
A gold standard, criteria-driven patient- and family-centered
system has standardized care, care coordination, excellent commu-
nication, accountability, and performance outcomes that patients
and payers care about most. Benefits should be measurable (when-
ever possible): meaningful extension of life, quality of life and
death, reduced costs, higher patient and professional satisfaction
scores, and resource preservation. Table 91.2 presents the potential
benefits of an effective supportive care service (in simple language)
to communicate with intramural and extramural colleagues. It is
recognized that not all services will be provided by any single pro-
gram or discipline. The end user will be able to extract the relevant
information as it pertains to his or her functions andneeds.
INTEGRATED INTERDISCIPLINARYTEAMS
True patient- and family-centered medical care cannot be achieved
without integrated interdisciplinary teams that are tightly coordi-
nated based on clarity of roles, while encouraging boundary blur-
ring where appropriate, with openly shared expectations for each
team member. An essential part of the team, patients and their
families, also need to be taught (formally and via role modeling
by healthcare professionals) what is expected of them. Our clini-
cal experience has shown two major complaints of patients and
families about cancer care:lack of coordination and poor com-
munication among the professionals. There has been a recent push
Table91.2 Transformational Language:Leveraging the Power of SupportiveCare
Screening
Screening is now the
standard of care
Identify and
communicate patient
concerns, symptoms,
and potential barriers to
care at clinical encounter
Communicate about
these concerns to:
patient, staff, institution
Triage and
referralpatients
immediately receive
information or are
referred to a professional
for early intervention
Developing ability to
identify patients who
are at high risk for
readmission
Assessment Problems Identified and Implications of Problems Action Plan Specific Tailored Benefits to Patients/
Managed Inventions Linked to Families, Physicians, Staff,
Action Plan
and Institution
Working diagnosis/ Abuse and Patient/Family Patient/Family Patient/Family Patient/Family
problem formulation neglectsexual, child, Decreased adherence Educate, navigate, Advocacy Increased sense
Recommended plan domestic, elder with treatment coordinate, support, Cognitive behavioral of control and
of action, including Abusesubstance Decreased satisfaction treat, counsel, advocate, therapy predictability
testing, referrals, misuse Increased distress, anger,
anticipate, and prepare Consultations Increased
management strategies, Advance directive for problems communication
suffering, confusion Counseling
communicated to communication and Teach emotional about health system
Poorer medical Individual, couple, family
relevant colleagues regulatory compliance regulation to cope to enhance trust and
outcomes and group interventions
Match need with most Barriers to discharge and make decisions teamwork
Inability to consent to Integrative therapies
appropriate level of Cognitive impairment
effectively Adaptive patient and
professional or resource treatment Navigation
Integrate complex and family functioning and
Communication barriers MD/Staff
required ambiguous information Patient and family partnership in care
Delirium, anxiety, or Poorer medical
Connect with right to partner with education Organize conflicted
professional/right mood syndromes all outcomes healthcare team in Problem-solving families to make
resource quickly related to treatments Multiple redundant making difficult decisions therapies coordinated and
Difficulty partnering with contacts togetherdecisions that
Resource support appropriate decisions
medical team Poor use of time honor individual values Enhanced outcomes
School Reintegration
Difficulty understanding and goals
See fewer patients via adherence
information Tailored information and
Help move discussions to medical care;
No-shows referral
Feeling unprepared to and care plans forward decrease physical and
Disruption to clinic
manage care at home when families are unable Side effect management emotional symptoms;
processes to make a decision Stress management skills
Disruption to clinic decrease substance
Negatively impacts care Mobilize community abuse; compliance
processes Symptom management
of other patients resources with medication
Disabling physical MD/Staff
Safety procedures Reduce suffering and appointments
symptoms Care management
undermined maximize quality of life Enhanced coping,
Emotional distress strategies for complex
Emotional distress Diagnosis and treatment emotional regulation,
High-conflict or situations
transferred to team of psychiatric or physical problem-solving skills
disorganized families Communication to
Frustration, burnout symptoms Improved patient
Homelessness primary team about
Impact on physicians Ensure follow-up hospital experience
Inability to make physical cognitive or
and staffs home/quality appointments are made behavioral symptoms Improved family
decisions
of life and kept and how treatment plan bereavement outcomes
Inadequate social
Institution MD/Staff will be carried out Increased longevity of life
support
Decreased patient Support and join Consultations to MD/Staff
Lack of trust in medical
satisfaction as reflected colleagues in sub-specialists and Having a team to
team
in lower Press Ganey management of care tailored resources manage complex
Mental illness scores Teach ways to Professional education situations
No caregiver engage and maximize Symptom management
Non-adherence with cooperation
treatment
(continued)
Table91.2(Continued)

Screening Assessment Problems Identified and Implications of Problems Action Plan Specific Tailored Benefits to Patients/
Managed Inventions Linked to Families, Physicians, Staff,
Action Plan
and Institution

Poor knowledge of Increased expense Manage psychosocial Treatment planning with Satisfaction of providing
community resources Increased litigation problems so that the primary team appropriate and efficient
Sexual adjustment Unnecessary inpatient
physicians dont have Facilitate development medical care

to do so during medical of a consistent and Enhanced team
Social isolation admissions and
appointments unified message amongst communication
Spiritual crisis readmissions
Enable colleagues to primary team and all Enhanced clinical
Suicidal ideation High staff turnover rates
focus on what they are consultants when there operations
Transportation problems trained to do may be team conflict Increased teamwork and
Unable to access Maximize MD Institution satisfaction
resources appointment time with Identifying safety Increased patient
patients risks, monitoring and satisfaction and
Improve intervening gratitude, creating
physician-physician Professional education a calmer work
communication so the Service revenue environment
medical team speaks
Coordination of Decreased patient
with one voice.
management across the no-shows
Institution
institution See more patients and
Work with team to raise more revenue;
Meeting regulatory
coordinate services increased patient
reporting standards
and to personalize volumes
Provision of educational
management Staff retention
services to the
Coordinate with
community Institution
Administration, Quality
Decreasing risk and Enhanced Patient Safety
Management, Legal,
Patient Advocates, liability Reduced Expenses

Billing, and other Engaging patient Increased Revenues

departments to manage and families as lay Enhanced Employee
high-risk situations consultants
Benefits
Meet/exceed
community standards
Positive community
benefit
Model of innovation and
excellence
 Chapter91 building supportive care programs 677

to solve this problem by adding additional layers of healthcare
professionals to a system that is already too chaotic. Although
Ethics Committees, navigators, patient advocates, and Patient and
Family Advisory Councils all will bring benefit and clearly have
value, these added layers and additional costs, in isolation, will
not address underlying structural problems. Unless carefully inte-
grated, these added elements may make thingsworse.
Cancer care has become much too complex (and expensive) for the
existing ad hoc collaborative (I [the professional] will call support-
ive care when I [the professional] need you) model. There is an alter-
native paradigm that the authors support and have implemented.
We (the team), along with the best evidence, ongoing input from
patients, families, and the informed judgment of professionals, will
create, refine, and standardize systems of care that maximize the full
potential of technologies and people to achieve clearly defined per-
formance outcomes that are based on the highest quality at the most
reasonable cost. (For a comprehensive discussion about the essential
elements to creating teams, please see Loscalzo, Von Gunten2).
ROLE OF SCREENING FOR DISTRESS
AS ASTRATEGY TO HELP IN BUILDING
COMPREHENSIVE INTEGRATED
INTERDISCIPLINARY PROGRAMS
Best practice supportive care can only be achieved by standardized
screening for distress in all cancer patients and across the cancer
care continuum.8 This direction has now been endorsed by over
75 international organizations and is required by several interna-
tional cancer accreditation organizations. Best reflecting this shift,
the International Psycho-Oncology Standards (2010)9 statethat
1. Quality cancer care must integrate the psychosocial domain
into routine cancer care,and
2. Distress should be measured as the Sixth Vital Sign, after tem-
perature, blood pressure, respiration rates, pulse, andpain.
Identifying, monitoring, and screening for distress, as the Sixth
Vital Sign effectively imbedded as a standard of care, have the
potential to become the essential driver for practice change and
supportive care (broadly defined) program development.
There is no gold standard with regard to which screening tool
is the best. Thus the ultimate decision about which screening
tool to use will remain up to the individual organization and
clinical team. Going forward, beyond the choice of instrument,
the essential next step is to implement a program of screening
patients at time of entry into care and at essential time points
(in treatment or at time of key appointments), with the health-
care system being attentive to and addressing the symptoms and
problems raised (see Figure 91.1). The model for successful sus-
tainable screening should follow the implementation strategy
depicted in the figure.
Screening for distress creates a clear and simple road map of
how best to approach what patients have identified as their con-
cerns. By identifying distressing symptoms and concerns, the
healthcare team can start the discussion about symptom severity,
can begin to address concerns rapidly, and can monitor outcomes
in the clinic or refer to the appropriate supportive care special-
ists in an appropriate and timely way.4 Screening also creates the
impetus for professionals to work together to address the many
problems and concerns of patients and their families and to grow
and develop integrated interdisciplinaryteams.
STAFF LEADERSHIPMODELS
Regardless of the setting, hierarchical command and control lead-
ership models are increasingly being discarded for more demo-
cratic strategies that focus on encouraging colleaguesin other
words, inspiration over perspiration. Needless to say, given the
individualistic nature of highly educated healthcare profession-
als, this is always a challenge that is fraught with opportunity.
Staff leadership models are still in their nascent stages, but we

Health care team opens a

conversation with patient about key
concerns, assesses and treats
symptoms. If above cutoff, triage to
appropriate supportive care
professional or resource.
In-depth assessment of patient
problem; negotiate a relevant
plan of care; triage to appropriate
professional in a timely way.

Screen for Distress at point of

Assessment based on concern Intervention based on best
entry and at critical time
and discipline practice
points

Intervention includes tracking

changes and repeated Screening
(at critical time points) to
monitor outcomes and progress
and further issues of Distress

Figure91.1 Screen, assess, andtreat.

678 SectionXV professional education and building supportive care programs
now have enough experience (~20 years) to share some lessons
learned. Paradoxically, in the more democratic staff leadership
models, leadership matters even more, much more, than in tra-
ditional top-down departments. Bottom line, leadership really
matters. Within this context, leadership includes the follow-
ing: role-modeling honest and open communications, tailoring
messages to audiences (especially by gender and generations),
being courageous, inviting ongoing critique, being fair, leading by
learning, testing and refining approaches and programs, and most
of all, inspiring others.
The underlying premise of staff leadership is that every col-
league, from the secretary to the department chair, has the
capacity (and obligation) to make a significant contribution that
is unique and that ignites the creativity and passion of colleagues.
In addition, it is the responsibility of every colleague to openly
question and challenge any and all aspects of the supportive
care program. It is the responsibility of the directors and man-
agers of the department to create a shared vision and ongoing
opportunities to inspire great programs. Some approaches to
moving staff leadership models forward include yearly retreats
(organized by non-managerial staff); staff-led work teams that
focus on time-limited projects with clearly defined outcomes;
department-wide staff leadership meetings with open agendas,
with 90% of the time led by non-managerial staff; division-wide
meetings to focus on internal operational issues; and open man-
agers and directors meetings with agenda and minutes shared
openly with the department. Staff leadership models assume
that every member of the team has much to offer, with system-
atic ways for all colleagues to do so. The goal is to make sup-
porting and challenging the program equally valued:it becomes
easier to make contributions than not to. It is important that all
team members understand that most of what is accomplished is
achieved by understanding the perspective of othersby grit,
perseverance, and teamwork. It is essential to de-mythologize
the skills related to leadership so that all team members can lead
change. Leadership is not a job; it is a function. It is important
for colleagues to know that successful activities lead to indi-
viduals being charismatic and that personal growth in one indi-
vidual leads to positive changes throughout the system. This
strengths-based approach may have particular salience for men-
tal health professionals, who have much to offer their colleagues
and the healthcare system.
CREATING THE FUTURE OF SUPPORTIVE
CARETODAY
Although a strong evidence base is an important basis for quality
care, it is also true that data, in isolation from appropriate medi-
cal culture or behavior, will not be enough to generate change.
Supportive care professionals, in particular, have the obligation
to bring humanistic values, along with compassionate expertise,
to all of their interactions with patients, their family caregivers,
and, to no lesser extent, to their colleagues. The greatest oppor-
tunities for comprehensive supportive care is to first create inte-
grated interdisplinary teams that are highly efficient and well
coordinated, and that focus on unleashing the innate intelligence,
wisdom, creativity, and dynamism of the entireteam.
REFERENCES
1. World Health Organization. Are the number of cancer cases increas-
ing or decreasing in the world? http://www.who.int/features/qa/15/
en/index.html. Published April 1, 2008. Accessed December 22,2013.
2. Loscalzo MJ, Von Gunten C. Interdisciplinary teamwork in palliative
care:compassionate expertise for serious illness. In:Chochinov HM,
Breitbart W, eds. Handbook of Psychiatry in Palliative Medicine, 2nd
ed. NewYork:Oxford University Press; 2009:172185.
3. Loscalzo MJ, Bultz BD, Jacobsen PB. Building psychosocial pro-
grams:a roadmap to excellence. In:Holland JC, Breitbart WS, Jacobsen
PB, Lederberg MS, Loscalzo MJ, McCorkle R, eds. Psycho-Oncology.
2nd ed. NewYork:Oxford University Press; 2010:569574.
4. Faller H, Schuler M, Richard M, Heckl U, Weis J, Kuffner R. Effects
of psycho-oncologic interventions on emotional distress and qual-
ity of life in adult patients with cancer:systematic review and
meta-analysis. J Clin Oncol. 2013;31:782793.
5. Holland JC, Andersen B, Breitbart WS, etal. Distress management.
JNatl Comp Cancer Network. 2013;11:190209.
6. Strong V, Waters R, Hibberd C, etal. Management of depression for
people with cancer (SMaRT oncology 1):a randomized trial. Lancet.
2008;372:4048.
7. Fadul N, Elsayem A, Palmer L, Del Fabbro, Swint K, Li Z, Poulter V,
Bruera E. Supportive versus palliative care:whats in a name? a sur-
vey of medical oncologists and midlevel providers at a comprehensive
cancer center. Cancer. 2009 May 1:20132021.
8. International Psycho-Oncology Society (IPOS). IPOS 2010 website.
http://www.ipos-society.org/ipos2010/. Accessed January 21,2014.
9. International Psycho-Oncology Society (IPOS). Standards and
Clinical Practice Guidelines in Cancer Care. 2010. http://ipos-society.
org/about/news/standards_news.aspx. Accessed January 21,2014.
 CHAPTER92
Oncology Staff Stress and
Related Interventions
Mary L.S. Vachon and Phyllis N.Butow
Working in oncology can be both rewarding and stressful.
Oncology health professionals (HPs) recommend and deliver
complex treatment regimens in an ever-changing field, increas-
ingly cure patients of their disease (while also accompanying
many patients to the end of life), and conduct intellectually stimu-
lating research, Along the way, they provide essential emotional
and informational support to patients and their families. While
this can be deeply meaningful work, oncological practice can also
be one of the most demanding and stressful areas of medicine.1
Oncology HPs still cannot cure many of their patients, administer
very toxic treatments with only a probability of benefit and many
short- and long-term side effects, and may be faced with long
clinic lists and limited time. They are also faced with existential
questions on a daily basis, coming face to face with strong emo-
tions in their clinical practice. All of these demands can result in
stress, depression, and professional burnout. This chapter focuses
on recent research on occupational stress and burnout, and its rel-
evance for understanding the stressors, coping mechanisms, and
programs of intervention relevant to oncologyHPs.
OCCUPATIONALSTRESS
The concepts of stress, burnout, compassion fatigue, and moral
distress are all relevant in a discussion of stress in oncology. Of
these, the issues of stress and burnout are most studied. Burnout
is a psychological syndrome in normal people, in response to
chronic interpersonal stressors on the job.2 Box 92.1 lists the
symptoms of burnout, which include physical, emotional, occu-
pational, and social symptoms. The three key dimensions of burn-
out3 are the following:
Overwhelming emotional exhaustion (EE)the basic indi-
vidual stress dimension of burnoutrefers to feelings of being
overextended and depleted of ones emotional and physical
resources. Feelings of cynicism and detachment from the job
(depersonalization; DP)the interpersonal context dimension
of burnoutrefers to a negative, callous, or excessively detached
response to various aspects of the job. Research shows a consistent
and strong relationship between exhaustion and cynicism, both
of which emerge in the presence of work overload and social con-
flict.3 Asense of ineffectiveness and lack of personal accomplish-
ment (PA)the self-evaluation dimension of burnoutrefers to
feelings of incompetence and a lack of achievement and produc-
tivity at work. Recently, researchers have proposed that PA is an
independent construct, similar to self-efficacy, and should not be
included in burnout research.
BURNOUT RATES IN ONCOLOGY
In Maslach and Jacksons 4 original normative sample of US physi-
cians and registered nurses, 33% had high EE, 33% high DP, and
33% low PA. Shanafelt and Dyrbye1 noted that despite expecta-
tions that oncology staff would have worse burnout than other
medical disciplines, the limited evidence available does not sup-
port this. A 2008 review of 10 studies5 (total N = 2357) identi-
fied a range of 8%51% of oncology HPs suffering severe burnout
on at least one of the burnout components, with overall EE and
DP prevalence rates of 36% and 34%, respectively, only slightly
higher than Maslach and Jacksons norms. The considerable
heterogeneity in burnout rates across studies was attributed to
the multi-professional nature of respondents and the interna-
tional nature of the samples that come from different healthcare
systems.5
Thus it is possible that in some groups and some countries,
burnout is higher. For example, Barrett and Yates 6 suggested that
cancer nurses may be a group particularly at risk due to having
lower power and control within their workplace. They surveyed
243 oncology/hematology nurses in Australia; over 70% expe-
rienced moderate to high levels of EE, and over 48% could not
commit to remaining in the specialty for a further year. In her
review, Vachon7 noted that more Italian hematological doctors
and nurses, Canadian gynecologic oncologists, and Greek oncol-
ogy and transplant staff reported high EE (about 40%) than gen-
eral oncologists in Japan, the United Kingdom, Italy, Spain, and
Portugal, and surgical oncologists in the United States (about
25%), and particularly Japanese palliative care physicians (15%).
It is not clear what drives these cross-cultural, cross-disciplinary,
and cross-tumor group differences.
Shanafelt and Dyrbye1 note that burnout rates in medical stu-
dents are much higher than in experienced physicians, at over
50%, increasing further during residency. A sense of deep per-
sonal responsibility in the context of inexperience and long hours
may make residents particularly vulnerable to burnout.
680 SectionXV professional education and building supportive care programs
Box 92.1 Signs and Symptoms of Burnout
Physical
Fatigue
Physical and emotional exhaustion
Headaches
Gastrointestinal disturbances
Weightloss
Sleeplessness
Hypertension
Myocardial infarction
Psychological
Anxiety
Depression
Boredom
Frustration
Lowmorale
Irritability
May contribute to alcoholism and drug addiction
Occupational
Depersonalization in relationships with colleagues, patients,
orboth
Emotional exhaustion, cynicism, perceived ineffectiveness
Job turnover
Impaired job performance
Deterioration in the physicianpatient relationship and a
decrease in the quantity and quality ofcare
Social
Marital difficulties
Adapted from Shanafelt T, Dyrbye L. Oncologist burnout:causes,
consequences and responses. J Clin Oncol. 2012;30(11):12351241;
Spickard AJr. Gabbe SG, Christensen JF. Mid-Career burnout in
generalist and specialist physicians. JAMA. 2002;288:14471450.
The Impact of Burnout
Burnout can have serious consequences, for HPs, for the patients they
care for, and for the health system. Burnout is more strongly associ-
ated with low satisfaction with career choice than screening positive
for depression,8,9 and is associated with decreased job performance
and decisions to leave medicine or consider early retirement.1
Burnout increases risk of poor HP health, including cardiovas-
cular disease, 5 depression and anxiety;10 broken relationships,
alcohol abuse/dependency, and suicide;1 suboptimal patient care
and medical errors;11 lower patient satisfaction, lower adherence
to physician recommendations,12 and lower confidence in the
physician.1 For example, a national cross-sectional study of 8000
US surgeons found a strong dose-response relationship between
burnout and errors, with nearly 10% of surgeons reporting a
major medical error in the past three months.11 Thus burnout is
a critical issue for health services and professional bodies. Serious
consideration regarding the causes of, and intervention to reduce,
burnout at all levels is required.
Factors That Increase Risk of Burnout
Demographic Variables
Age is a key predictor of burnout. Younger staff report more stress-
ors, exhibit more stress and fewer coping strategies, and are more
prone to burnout.13 One study found that emotional sensitivity
and the ability to connect with patients rose after the age of35.14
Females may be more at risk of mental health problems and
burnout.7 However, in a large study of UK National Health Service
physicians, male and middle-aged consultants were particularly
at risk.15 Those with more responsibility for dependents, either
children or elderly parents, also report more stress; work-home
interference is associated with burnout.7 Being single is also a risk
factor for burnout, suggesting that the emotional support pro-
vided by a partner can mitigate stress and burnout.
Personality Factors
The compulsive triad, common in HPs, of doubt, guilt feelings,
and an exaggerated sense of responsibility can increase risk of
burnout.7 Being unaware of ones physical and emotional needs
can lead to a self-destructive pattern of overwork and habitual
delay in attending to significant relationships and other sources of
renewal until all the work is done or the next professional hurdle
is achieved. Bakker etal.16 noted that overcommitted individuals,
driven by a high need for control and approval, commonly invest
too much effort, leading to burnout. Other personality character-
istics associated with burnout include neuroticism and lower lev-
els of hardiness and self-esteem.7
Being religious or spiritual has been associated with a decreased
risk of burnout.7 Kearney and Mount17 speak of the need for
HPs to develop their own inner spirituality, when they are with
patients who are experiencing spiritualpain.
Work-RelatedIssues
Research supports strong associations between burnout and
various job characteristics, including chronically difficult job
demands, an imbalance between high demands and low resources,
and the presence of conflict (whether between people, between
role demands, or between important values).7 The greater the
gap or mismatch between the person and the environment, the
greater the likelihood of burnout, and the smaller the likelihood
of engagement with work. Six areas of work life encompassing
the major organizational antecedents of burnout are workload,
control, reward, community, fairness, and values. Emotion-work
variables (e.g., requirement to display or suppress emotions on the
job, or to be emotionally empathic) account for additional vari-
ance in burnout scores.7
Workload
Excessive workload exhausts the individual, and has long been a
major issue in oncology. Whippen and Cannelos18 report insuf-
ficient personal time and or vacation time as two of the three most
commonly reported stressors leading to burnout. Burnout is also
associated with being overloaded and its effect on homelife.
Control
Consistently, burnout is associated with HPs reporting having
difficulty performing in their jobs because of a lack of organiza-
tional resources, feeling disenfranchised, or having an imbalance
between their job and their authority.
Reward
Lack of reward may be financial, when salary or benefits are per-
ceived as not commensurate with achievements or equitable, or
social, when ones hard work is ignored and not appreciated by
others. Reports of communication problems with administration
often reflect a lack of social rewards. In the Ramirez etal. study,19
HPs had concerns about the future funding of units and felt that

skills were being under-utilized and unrecognized. Their lowest
satisfaction score was with job recognition. The lack of intrinsic
rewards (e.g., doing something of importance and doing it well)
can also be a critical part of this mismatch.
Community
This mismatch arises when people lose a sense of personal con-
nection with others in the workplace. Social support from col-
leagues with whom one shares praise, comfort, happiness, and
humor affirms membership in a group with a shared sense of val-
ues. Problems with colleagues were reported in many studies.7 For
example, HPs commonly discuss conflict in the workplace as their
greatest stressor.
Fairness
This mismatch arises when there is perceived unfairness in the
workplace. Fairness communicates respect and confirms peoples
self-worth. Mutual respect between people is central to a shared
sense of community. For example, in Turkey, oncology nurses
and oncologists experienced an imbalance between their jobs
and responsibilities, unfairness in job promotion, inadequacy of
equipment, and high cost of drugs.20
Values
People may feel constrained by their job to do something uneth-
ical or not in accord with their own values. People can also be
caught in conflicting organizational values, as when there is a dis-
crepancy between a lofty mission statement and actual practice, or
when values are in conflict (e.g., high-quality service versus cost
containment). Cohen and Erickson 21 suggest that students and
novice nurses in oncology may experience more uncertainty and
distress related to ethical issues, when they do not know what is
the right or best course of action.
Emotion/Work Variables
Staff report challenges with various aspects of communicating
with sick, suffering, and dying patients and their family mem-
bers,7 particularly if they are young. In the original burnout study
by Whippen and Cannelos,18 administering palliative or terminal
care was a contributing factor to burnout in 53% of respondents.
Rural nurses in Australia found that a key issue in providing psy-
chosocial care was their own emotional toil. As multi-skilled
generalists providing care to patients with cancer without neces-
sarily having specialist knowledge or skill, this resulted in fatigue
and EE that impacted on their own well-being.22 However, emo-
tional work can also increase perceived meaning in work, which
has been found to be protective against burnout.
JOB ENGAGEMENT AND
COMPASSIONSATISFACTION
Job engagement and compassion satisfaction (CS) are two frame-
works to understand what keeps workers functioning and enjoying
their work in challenging situations. Job engagement is sometimes
conceptualized as being the opposite of burnout: a persistent,
positive-affective, motivational state of fulfillment in employees
that is characterized by vigor, dedication, and absorption and is
affected by similar work variables as burnout.7 Compassion sat-
isfaction (CS)23 is satisfaction derived from the work of helping
others. Health professionals with CS derive pleasure from helping
others, and feel good about their ability to help and make a con-
tribution. CS may help to ward off compassion fatigue. Finding
Chapter92 oncology staffstress 681
meaning in pain, and that ones compassion (ones suffering with)
has power to help, can build resilience, sustaining an underlying
belief that the world is good and in order.7
COPING:Job Satisfaction and MeaningMaking
When health professionals of the critically ill, dying, and bereaved
were asked what enabled them to continue working in the field,
the top coping mechanism identified was as follows: a sense of
competence, control, or pleasure in ones work.13 Sources of satis-
faction for oncology staff include the following:
Dealing well with patients and relatives
Patient care or patient contact
Having professional status and esteem, deriving intellectual sat-
isfaction, and having adequate resources to perform onesrole
Being perceived to do ones jobwell
Having good relationships with colleagues
Personal ideals.
Oncology is often perceived to be a special environment, because
of long-standing relationships with patients. Attachment to work
and patients hardly declines, even in burnout.
REDUCING STRESS AND
BURNOUT:INCREASING WELLNESS
HPs need to address their own, as well as their patients, personal
wellness. We cannot continue to give if we are empty vessels.
Shanefelt and Dyrbyre1 emphasize that recovery from burnout
is possible, with prospective studies in medical students and
residents suggesting that approximately 12%27% recover over
the following 12 months. However, recovery requires deliber-
ate and sustained effort to identify and address the factors
contributing to burnout. Arecent review of burnout interven-
tions identified 25 relevant studies. 24 Most (80%) programs led
to reduced burnout. Person-directed interventions reduced
burnout in the short term (6 months or less), while a combi-
nation of person- and organization-directed interventions had
longer lasting effects (> 12 months). The Joint Committee on
Accreditation in the United States has mandated that all hos-
pitals have a program to address physician well-being, separate
from disciplinary processes. 25
Spickard et al.8 note that the best prevention for physician
burnout is to promote personal and professional well-being on
all levels:physical, emotional, psychological, and spiritual, from
medical school through to retirement. This is a challenge not only
for individual physicians but also for the profession of medicine
and the organizations in which physicians work. Of course this
concept applies equally well to all other HPs. Various individual
strategies have been proposed to decrease the probability of burn-
out, including the following:
Developing an approach/philosophy to dealing with death and
end-of-lifecare
Having a balance between personal and professionallife
Taking time for personal ref lection, spiritual practices,
recreation/hobbies/exercise
Taking a positive outlook
Identifying professionalgoals
682 SectionXV professional education and building supportive care programs
Optimizing careerfit
Identifying and managing stressors specific to practicetype
Having time to spend on research
Asking oneself and reflecting on a series of questions1 related
to ones greatest priority in life and whether one has been living
life in a way that demonstrates that; asking where one is most
irreplaceable; looking at adequate balance between home and
personal life; asking how much professional achievement one
is willing to sacrifice to have more time with family; checking
if one is asking more of a spouse than one should; asking what
type of legacy one wishes to leave ones children; inquiring what
person or activity one might have been neglecting; how one
would relive the past year; asking oneself what one would like
life to be like in 10years, and asking oneself what do Ifear?
One relevant trial of a burnout reduction intervention was an
eight-week mindfulness-based stress reduction (MBSR) pro-
gram for nurses in the hospital system, including some working
in oncology.26 Work had already been done to improve employee
satisfaction and retention; a nursing advisory council was set
up; there was work to enhance the model of self-governance and
increased opportunity for education and professional develop-
ment. The course taught mindfulness (being fully present to ones
experience without judgment or resistance), with an emphasis
on self-care, compassion, and healing. The treatment group had
decreased scores on the MBI, which lasted three months.
Communication Training
Reviews of the impact of communication skills training on burnout
have reached varied conclusions, with the most recent finding inad-
equate evidence to support a positive impact.27 LeBlanc etal.28 did a
quasi-experimental study of a team-based burnout intervention on
29 oncology units in the Netherlands. Nine wards were randomly
selected to participate in the Take Care! intervention. The program
consisted of six monthly three-hour sessions, including education
about the mechanisms of stress and feedback about the participants
work situation. At the end of the first session, the job stressors that
were to be dealt with during the training sessions were selected.
Education covered unwanted collective behavior; communication
and feedback, building a support network; balancing job-related
investments and outcomes; personal experiences; and potential
problems with change. Participants also formed problem-solving
teams to generate change in individually selected areas, with out-
comes including the introduction of more efficient procedures in
regard to reporting about patients and ordering supplies (quantitative
demands), the appointment of staff members as guardian angels
who should watch over team members well-being (support), and
restructuring of the weekly work meetings to enable more partici-
pation (voice) of staff members (participation in decision-making).
Results of multilevel analyses showed that staff in the experimental
wards experienced significantly less EE at both Time 2 and Time 3
and less DP at Time 2, compared with the control wards. Moreover,
changes in burnout levels were significantly related to changes in the
perception of job characteristics overtime.
Programs Integrating New Neuroscience Findings
There are novel findings in neuroscience that are being inte-
grated into interventions for staff. Roshi Joan Halifax has done
exciting work on teaching compassion to clinicians, based on
new neuroscience findings. Her Being with Dying Program is an
eight-day residential programthat
. . . encompasses ethical, spiritual, psychological, existential and
social aspects of care of the dying. It includes mindful and compas-
sionate approaches to end-of-life care, compassion-based ethics and
communication strategies in EOLC, clinician self-care and contem-
plative interventions appropriate for clinicians/caregivers and dying
people. The program builds on reflective practices that can regulate
attention and emotion, cultivate compassion, aid in the development
of a meta-cognitive perspective, promote calm and resilience, reduce
stress, and foster emotional balance, embodiment and compassion.
The training also emphasizes basic neuroscience research in relation
to the clinical, contemplative and conceptual content of the train-
ing.29 (p.467)
Recent work in Toronto by Maundar, Lancee, Lawson etal. 30 grew
out of trying to build resilience in staff during the Toronto SARS
epidemic. Their Stress Vaccine recently won the international 2013
Ted Freedman Award for Innovation in Education. The original
program was adapted for hospital staff with the intention to test
to see if it has application in non-hospital settings. There are 10
computerized sessions, which take 2030 minutes, and staff can
proceed at their own pace. The sessions include:
Self-assessment with feedback
Coping, interpersonal problems and challenges, empathy
Didacticteaching about interpersonal interactions, reflective
thought andcoping
Skills practicerelaxation training
Interactive
simulations of stressful situations + reflection
+/ coaching
The multiple modalities include simulated interpersonal inter-
actions using video enactments of stressful scenarios, which are
combined with personalized dialogue with the computer to
reflect upon difficulties that are encountered and to discover new
options. Learning also occurs via (a)identification of ones own
interpersonal style and preferences, using validated question-
naires with feedback; (b)guided reflection about recent difficult
interactions, identifying patterns and applying insights about
ones own style; (c)practicing relaxation exercises; (d)role-playing
responses to interpersonal challenges; (e)guided self-evaluation
of the empathic quality of responses to challenge; and (e)the com-
ments of videotaped peer coaches. Following multiple paths to the
same goals, healthcare workers learn to increase their capacity to
reflect, thus improving tolerance for the ambiguity, uncertainty,
and conflict, which are core contributers to workplace stress.
Neuroscience research is integrated, for example, by teaching par-
ticipants to increase reflection, reducing reactivity, using the slow
parts of the brain to think about what is going on in ones own
mind and in the minds of others.
CONCLUSIONS
In conclusion, the stressors and satisfactions in oncology have
not changed since the early years of the field, but there are new
insights into the factors that might contribute to burnout, ways
of identifying those at risk of burnout, and programs to promote
job engagement. As important as workplace interventions are,
the responsibility of health professionals to engage in personal

wellness programs is essential. Remember the warning from air-
line safety instructionsfirst attach your own oxygenmask!
REFERENCES
1. Shanafelt T, Dyrbye L. Oncologist burnout:causes, consequences and
responses. J Clin Oncol. 2012; 30(11):12351241.
2. Maslach C, Schaufeli WB, Leiter MP. Job burnout. Annu Rev Psychol.
2001;52:397422.
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 CHAPTER93
Training Psychiatrists
and Psychologists in
Psycho-Oncology
Michael A.Hoge and Andrew J.Roth
INTRODUCTION
The 2007 report by the Institute of Medicine (IOM), Cancer
Care for the Whole Patient, highlighted the psychosocial needs
of cancer patients and survivors and described the health-
care workforce necessary to assure that these needs are met.1
Asubsequent IOM report from 2013, Improving the Quality of
Cancer Care:Addressing the Challenges of an Aging Population,
placed an emphasis on quality of life issues and psychosocial
needs for older adults, who constitute the largest growing pop-
ulation of cancer patients. 2 Unfortunately, there is a wide gap
between these patients psychosocial needs and available ser-
vices. The unmet needs result in part from the limited number
of training opportunities within the disciplines that comprise
psycho-oncology in general and geriatric psycho-oncology in
particular.
The art and science of psycho-oncology has evolved signifi-
cantly over the past 40years (see Chapter1). As an interprofes-
sional field, contributions to the growing body of knowledge and
best practices have come from varied sources, including psy-
chiatry, psychology, nursing, social work, and pastoral counsel-
ing. The care of oncology patients has shifted substantially from
inpatient to ambulatory care settings due to advances in treatment
and a general trend in healthcare toward cost-effective office- and
community-based services. As a result, psycho-oncology training,
primarily conducted on inpatient units in the past, has witnessed
a similar shift in focus toward ambulatory settings.
Many of the traditional areas of focus within psycho-oncology
training have remained a priority. These include teaching mental
health providers how to help patients cope with new cancer diag-
noses, recurrences of illness, and end of life issues, and to manage
the palliative care issues related to treatment side effects, fatigue,
pain, anxiety, and depressive symptoms. As the field has evolved,
there has been increased attention within training programs on
survivors health and well-being and on addressing the needs of
family caregivers who provide far more medical and psychosocial
support today than ever before, while carrying the usual burden
of family and work obligations.3
This chapter provides an overview of training in psycho-oncology
for psychiatrists and psychologists. Core competencies, training
goals, and training programs are described. Astrategy for increas-
ing the number of professionals in these disciplines who are com-
petent to meet the needs of individuals with cancer is discussed.
PSYCHIATRY
There are about 45,000 psychiatrists in the United States,4 though
the Bureau of Labor Statistics suggests there were 24,210 employed
in 2012.5 They are graduates of medical school and a four-year gen-
eral psychiatry residency (the first year as an intern). Aone-year
post-residency fellowship in psychosomatic medicine (PM), which
encompasses the psychiatric care of the medically ill, is required
to attain certification in this subspecialty by the Accreditation
Council of Graduate Medical Education (ACGME). Within PM,
which was historically known as consultation-liaison psychiatry,
lies the further attainment of psycho-oncology expertise.
PM addresses the range of complex medical and psychiatric
issues that arise in medical and surgical patients, as well as the
communication and liaison activities needed between the primary
medical team, consultants, and the family and patient. PM fellow-
ship programs provide 12months of supervised graduate education
and are approved by the American Board of Medical Specialties
(ABMS), ACGME, and the American Board of Psychiatry and
Neurology (ABPN).6,7 To be eligible for a fellowship, an individual
must have graduated from an ACGME-approved residency in the
United States or Canada.
As of this writing, there are 53 accredited programs in PM
(an increase of 50% since the last edition of this textbook), with
almost 100 training positions available.8 Many PM programs offer
opportunities for fellows to spend time on inpatient oncology ser-
vices (e.g., bone marrow/stem cell transplant units) or in ambula-
tory cancer settings (e.g., breast cancer clinics). However, there are
only two programs in the United States that have positions pri-
marily dedicated to psycho-oncology:Memorial Sloan-Kettering
Cancer Center and Dana Farber Cancer Center. These two pro-
grams train a total of seven fellows peryear.

The oldest and largest psycho-oncology clinical and research
training program in the United States was established in 1979 at
Memorial Sloan-Kettering Cancer Center (MSKCC). Over 300
trainees have graduated from the program, which initially pre-
pared both psychiatrists and psychologists for academic careers
in psycho-oncology. With the advent of the ACGME accreditation
process for a PM fellowship program, all resources were focused
on and limited to the training of psychiatrists.
The clinical fellowship program at MSKCC is affiliated with the
Weill Cornell Medical College/NewYork Presbyterian Hospital
(NYPH) psychiatry residency program. Fellows spend 10months
at MSKCC and 2 months at NYPH, where they are assigned to
general medical and surgical units. Fellows may stay on for an
optional second year to focus on psycho-oncology research or
program administration. Clinical fellows have a number of joint
didactic activities with research fellows from the division of
Behavioral Sciences at MSKCC, which has been supported by an
NIH-training grant for 30years.
Training Goals for Psychiatrists in Psycho-Oncology
Training in psycho-oncology adheres to the six ACGME core
competencies: (1) patient care, (2) medical and/or psychiat-
ric knowledge, (3) professionalism, (4) system-based practice,
(5)practice-based learning and improvement, and (6)interper-
sonal and communication skills. The broad goals of psychiatric
training in PM are to develop skills in clinical care, commu-
nication, administration, and research, all of which are useful
for a psycho-oncologist. However, psycho-oncology requires
the development of several additional specific skills. Drawing
on the MSKCC approach, these skills and experiences are
describedbelow.
Fellows learn to perform comprehensive evaluations of can-
cer patients and to recognize psychiatric syndromes, as well as
cancer-related and treatment-related psychiatric problems. For
instance, knowing that the steroid dexamethasone is admin-
istered along with certain chemotherapy regimens and can
cause anxiety, insomnia, irritability, sleeplessness, and mood
changes can expedite psychiatric intervention and comfort for
the patient. Fellows also learn about varied psychiatric, quality
of life, and palliative care problems, such as the impact of pain,
fatigue, and nausea throughout the course of cancer care; diffi-
culties coping with recurrence of disease; and end-of-life issues.
Psycho-oncologists in training learn about the impact of genetic
and lifestyle vulnerabilities that impact patients and their families
and can complicate coping with cancer. Understanding the factors
that affect adherence to cancer treatment and learning strategies
to improve adherence are also integral to a trainees experience.
For instance, the patient with a newly diagnosed lung cancer who
is told to stop smoking might need added assistance to deal with
the anxiety and mood changes that can be unmasked by smoking
cessation. Similarly, understanding that head and neck cancers
often develop in individuals with histories of heavy alcohol and
tobacco use might guide the psycho-oncology fellow to consider
the possibility of substance withdrawal as a cause of anxiety or
cognitive decline among this patient group. Through rotations in
different cancer clinics and inpatient units, fellows deepen their
understanding of the consultative and liaison role and improve
their ability to work effectively with other members of the cancer
treatmentteam.
Chapter93 training psychiatrists and psychologists 685
The ability to recognize and diagnose psychiatric syndromes
and disorders is basic to psycho-oncology training. Fellows learn
about syndromes that are associated with different types of cancer
and with certain treatments, such as body image distress of women
with breast cancer and the coping strategies that may benefit these
women. Fellows also learn specific sexual therapy techniques and
how to use them appropriately to foster relationship intimacy.
This is often relevant in men with prostate, testicular, or bladder
cancer, and women with breast, ovarian, or cervical cancer, given
the direct impact of surgical, radiation, chemotherapeutic, and
hormonal interventions on the body and on sexual functioning.
Often, physiological, medical, or medication problems manifest
as psychiatric symptoms. Specific types or sites of cancer, specific
medications, and metabolic and hormonal changes can cause con-
fusion, anxiety, irritability, and depression.
Psycho-oncologists must also develop the ability to recommend
or provide a range of psychosocial interventions, including indi-
vidual, family, and group psychotherapy, which may be dynamic,
supportive, cognitive behavioral, or existential in approach. Other
relevant techniques include crisis intervention, problem-solving
interventions, sex therapy, bereavement counseling, and relax-
ation training and meditation. The psycho-oncologist must know
the range of traditional, cancer-specific, and complementary ther-
apies in order to advise patients appropriately and to relieve suf-
fering. Psycho-oncology fellows in ambulatory care and inpatient
settings learn the rudiments of relieving the physical and emo-
tional distress brought on by cancers threat to life and quality of
life. In addition to becoming skilled in helping individuals with
cancer cope more effectively, trainees also learn to apply appropri-
ate interventions for families andstaff.
An important part of fellowship training is to learn how to
convey information to the patient, family members, and staff.
Though psychiatrists may have an advantage over their medical
colleagues when it comes to previous training and experience in
communication, psycho-oncology necessitates additional skill
building to learn how to help a patient who has just received bad
news, including those who are no longer able to receive any fur-
ther active treatment and are being referred for supportive or hos-
pice care. Teaching these skills to young psycho-oncologists side
by side with other members of the oncology team is an important
strategy for supporting the ability of all of these practitioners to
manage complicated emotional situations and to minimize burn-
out and compassion fatigue.9,10 Specialized Communication Skills
Laboratory modules have been developed at MSKCC for PM fel-
lows, in which didactic instruction is coupled with experiential
learning that involves conducting interviews with an actor/patient
under supervision. It is an important pedagogical milestone for
fellows to be able to teach medical students, other house staff,
nurses, and social workers the skills they have learned.
In terms of psychopharmacology, the trainee must learn the
indications for specific psychotropic medications, their primary
action, their potential adverse or helpful side effects, and potential
drugdrug interactions. Oncologists often rely on the psychia-
trist for information in complex situations involving psychotropic
drug use and possible side effects.
Assignment to cancer units provides an education about the
complex social culture of multidisciplinary teams and treatment
units. Learning how to manage within a team various stressful
events, such as a death of a special patient, can be highly valuable.
686 SectionXV professional education and building supportive care programs
Psychiatry fellows attend meetings of the medical team during
which patient status is reviewed and, at times, clinical research is
discussed. Through these experiences, psycho-oncology trainees
learn about the organizational and administrative skills needed to
manage a psycho-oncology program.
Fellows can also participate in psychosocial care teams (PCTs)
that are composed of varied staff giving supportive care to a group
of patients. PCTs provide a rich learning experience for the fellow
about the range of supportive interventions provided by nurses,
social workers, art and music therapists, physical and occupational
therapists, chaplains, and complementary therapy practitioners.
Programs that focus on children and older adults also provide
training in family support and the difficult psychiatric and psycho-
social issues surrounding the care of both youth and the elderly.
Through journal clubs, fellows at MSKCC learn to understand
clinical research design and methods and to analyze the strengths
and weaknesses of journal articles. The psycho-oncology fellow
develops academic skills by participating in research seminars and
projects, writing scholarly papers with senior faculty, and partici-
pating in and presenting at national and international meetings.
Faculty
Psycho-oncology faculty members require extensive experience
with the multidisciplinary approach to cancer care. They should
have had in-depth clinical experience with patients and families
and have knowledge of the principles related to the medical, psy-
chiatric, and psychological care of the oncology patient. Having
faculty with experience in direct patient care is critical to the
acceptance of fellows by medical staff. Psychiatry trainees benefit
from exposure to a broad array of interdisciplinary faculty mem-
bers, including psychiatrists, psychologists, social workers, and
nurses who have specific experience in dealing with psychosocial
serviceneeds.
PSYCHOLOGY
Psychology is a large and rapidly expanding health profession. It
is the third largest of the traditional mental health disciplines, fol-
lowing social work and counseling. In 2011, there were an esti-
mated 95,545 doctoral-level psychologists in the United States
who were trained to provide clinical care.11
Psychology has an increasing role in the provision of psychoso-
cial services in medical centers and a growing, though less formal,
role in the provision of behavioral health services in community
settings to individuals with severe and/or chronic medical condi-
tions. The development of health psychology, as outlined below,
has been a major thrust within this profession, and offers training
most relevant to psycho-oncology. Training programs specific to
psycho-oncology occur largely in the context of pre- and postdoc-
toral internships. One such internship program is described.
Graduate Training in Psychology
The doctoral degree in psychology is the standard educational
path for practice as an independent clinical psychologist. Doctoral
programs are typically five years in length, of which the last year is
dedicated to a full-time clinical internship. License eligibility typ-
ically requires an additional year of supervised postdoctoral expe-
rience. Postdoctoral fellowships or residencies are not required,
but are becoming much more common.
The American Psychological Association (APA) accredits three
clinically related categories of graduate programs:clinical, coun-
seling, and school psychology. Specialization within these broad
categories is possible, but not required. The specialties most rel-
evant to psycho-oncology include clinical health psychology, neu-
ropsychology, rehabilitation psychology, and pediatric psychology.
While accreditation criteria require that all students be taught
the biological bases of behavior, the majority of students are not
trained to assess or treat the psychosocial impact of acute or
chronic medical illnesses. Expertise in this area comes principally
from matriculating to a graduate program or internship that offers
a training program in health psychology, which has emerged as a
major specialty within applied psychology.
Health Psychology as a Specialty
Psychology as an organized profession has been engaged over the
past decade in an effort to redefine itself. The traditional focus
on this discipline as a mental health profession is slowly giving
way to the broader concept of psychology as a health profession.
While this language change may appear subtle, the redefined
scope promotes a focus on prevention, health promotion, and on
non-psychiatric disorders, including the psychological impact of
medical illnesses. The preparation of psychologists to work with
cancer patients and their families most often involves specialty
training in health psychology, which teaches the core knowledge,
principles, and skills that can be applied to persons with any num-
ber of medical illnesses, of which cancer isone.
The APA has described the focus of clinical health psychology
as the study of interrelationships among behavioral, emotional,
cognitive, social, and biological components in health and dis-
ease and the application of this knowledge to health promotion
and maintenance, medical illness and disability prevention, treat-
ment and rehabilitation, and healthcare system improvement.12
Biological, cognitive, affective, social, and psychological bases of
health and disease are bodies of knowledge that, when integrated
with knowledge of biological, cognitive, affective, social, and psy-
chological bases of behavior constitute the distinctive founda-
tions of clinical health psychology. Clinical health psychologists
also have knowledge of how learning, memory, perception, cog-
nition, and motivation affect and are affected by physical illness,
injury, and disability. Knowledge of the impact on health of social
support, culture, providerpatient relationships, health policy,
and the organization of healthcare systems is also fundamental
to training in this specialty. Equally important is knowledge of
diversity and ethnic/cultural subgroup health issues; individual
differences in coping; emotional and behavioral risk factors for
disease; human development issues in health and illness; and
the impact of psychopathology on disease, injury, disability, and
treatment. The specialty also includes unique expertise in health
research methods and the distinctive ethical and legal issues asso-
ciated with practice in clinical health psychology.
Training in Health Psychology
In 1997, the APA recognized health psychology as a professional
practice specialty. There is no comprehensive list of doctoral pro-
grams with specialty training in health psychology; however, 22
programs are identified as members of the Council of Clinical
Health Psychology Training Programs.13 In 2014, the online
directory of the Association of Psychology Postdoctoral and

Internship Centers (APPIC) identified 459 doctoral internships
and 104 postdoctoral residencies that offered some level of super-
vised experience in health psychology.14 This is approximately
65% of all internships and residencies. Historical survey data from
the APA suggested that at least 5000 of its members had a medi-
cally related interest area.15
Graduate training in health psychology involves the core course
and experience requirements applicable to any psychology gradu-
ate program, plus a set of health psychology courses, some of
which are required and some elective in nature. Clinical place-
ments focus on medically ill populations and can be diverse in
focus, including patients with chronic pain, asthma, organ trans-
plant, cardiovascular disease, cancer, acquired immune deficiency
syndrome, obesity, and hypertension.
The competencies for graduate-level health psychology training
were initially identified through a 1983 national consensus confer-
ence.15,16 Building from this core competency set, Belar and col-
leagues created a tool for self-assessment of knowledge and skills
by health psychologists.17 Most recently, the Health Psychology
Division of APA sponsored a summit, during which the leaders in
the field identified competencies expected of entry-level clinical
health psychologists.18 The foundational competency categories
include reflective practice self-assessment; scientific knowledge
and methods; relationships; individual and cultural diversity;
ethical and legal standards/policy issues; and interdisciplinary
systems. Functional competency categories cover assessment;
intervention; consultation; research; supervision and training;
and management and administration.
Pre-Doctoral Internships and Postdoctoral Residencies
Disease-specific training is most often obtained through practi-
cum experiences or full-time, full-year pre-doctoral internships
and postdoctoral residencies. To ascertain the characteristics of
training focused on cancer care, the Association of Psychology
Postdoctoral and Internship Centers used its listserv to request
information from faculty involved in internships and residences
of this nature. This informal survey was conducted in 2007 on
behalf of the Institute of Medicine Committee on Psychosocial
Services to Cancer Patients/Families in a Community Setting.1
There were 18 responses in total, most of which contained a
brief summary of the training activities in a specific program. The
typical training model involved clinical experience with cancer
patients and families in a hospital setting, supervised by a faculty
member who had a specific interest and expertise in this clinical
topic. As part of the curriculum, many faculty members reported
assigning selected readings, while a few internship settings offered
a course relevant to cancer care. Most of the training did not
appear to be closely linked to an explicit set of competencies. The
overall impression from the survey findings was that psycholo-
gists were learning to work with cancer patients and their families
through an apprenticeship model that involved intensive clinical
experience mentored by a skilled professional.
The Childrens Hospital of Philadelphia offers a highly regarded
psychology pre-doctoral internship and postdoctoral fellowship
in pediatric psychology that affords specialized training in oncol-
ogy.19 The program combines developmental, ecological/systems,
and cognitive and behavioral approaches as a foundation for train-
ing and care delivery. The faculty has adopted an explicit com-
petency model to guide training, which addresses foundational,
Chapter93 training psychiatrists and psychologists 687
relational, scientific, and functional competencies. The training
goals identified by the program included the following:
Developing consultation skills, which involve conduct-
ing psychosocial screening, standardized assessment, and
patient care coordination as a psychology member of an
interdisciplinaryteam;
Acquiring family-systems and cognitive-behavioral psycho-
therapy skills for a wide range of issues related to childhood
cancer and its treatment for children, adolescents, and young
adults with cancer, as well as their families;
Learning to conduct and interpret neuropsychological assess-
ments related to neurotoxic effects of surgery, chemotherapy,
and radiation and the short- and long-term impact on learn-
ing, school achievement, and social-emotional and adaptive
functioning;
Developing, implementing, and evaluating psychosocial pro-
grams as part of the psychosocial servicesteam;
Contributing to clinical psycho-oncology research and qual-
ity improvement initiatives as an integral part of translational
research and clinical care in an academic medical setting.
INTERDISCIPLINARY TRAINING
RESOURCES
A number of training resources are available to support educa-
tional efforts in psycho-oncology. The American Psycho-Oncology
Society has a web-based core curriculum that takes into account
the different educational needs of various specialties. 20 The
International Psycho-Oncology Society (IPOS)21 and the
European School of Oncology (ESO) also have created an online
lecture series featuring key areas of psychosocial oncology. IPOS/
APOS will soon publish the second edition of a pocket handbook
for oncologists, edited by Holland and colleagues, that focuses
on a basic level of knowledge needed to serve the psychosocial
needs of cancer patients.22 Asimilar handbook edited by Weiner
and Pao focuses on the unique psycho-oncology issues in pedi-
atrics, 23 and a soon to be published quick reference handbook
focuses on the elder cancer population. Textbooks that are cur-
rently being used internationally to help train psycho-oncologists,
apart from this third edition of Psycho-Oncology, are Clinical
Psycho-Oncology:An International Perspective, edited by Grassi
and Riba,24 and the second edition of The Handbook of Psychiatry
in Palliative Medicine, edited by Chochinov and Breitbart.25
CONCLUSION
A number of conclusions can be drawn from this review. There
is a strong and growing body of knowledge and set of best prac-
tices that comprise the field of psycho-oncology. There are some
focused and innovative efforts in the United States and abroad to
educate young professionals in the effective assessment and treat-
ment of individuals with cancer. These programs serve as exem-
plars for others who may wish to help train the next generation of
psycho-oncologists.
For both psychiatry and psychology, however, dedicated
training programs in psycho-oncology are few in number.
Relevant, though less intensive, training in cancer care occurs
688 SectionXV professional education and building supportive care programs
in psychosomatic medicine residencies for psychiatrists and in
clinical health psychology programs for psychologists. Both of
these broader fields have been making strides to define core com-
petencies and to expand their size and influence in medical care.
Training in these broader programs may include rotations involv-
ing the care of individuals with cancer. Relatively little is known,
however, about these rotations and the cancer-specific knowledge
and skills that trainees acquire.
Since funding for training and service delivery in
psycho-oncology is limited, at least one objective for the field
over the next decade could be to strengthen and formalize
psycho-oncology as an area of training and specialization within
PM residencies for psychiatrists and within internships and fel-
lowships in health psychology for psychologists. Embedding
training and the development of expertise in psycho-oncology
within these broader specialties may be a ready strategy for rap-
idly expanding the workforce qualified to meet the needs of indi-
viduals and families faced with a diagnosis of cancer.
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www.health-psych.org/Clinicalprograms.cfm. Accessed January
4,2014.
14. Association of Psychology, Post-Doctoral and Internship Centers.
APPIC Online Directory. 2014. http://www.appic.org/directory.
Accessed January 3,2014.
15. Belar CD. Issues in training clinical health psychologists. Psychol
Health. 1990 Feb;4(1):3137.
16. Stone GC. National working conference on education and training in
health psychology. Health Psychol. 1983;2(5):1153.
17. Belar CD, Brown RA, Hersch LE, etal. Self-assessment in clinical
health psychology:a model for ethical expansion of practice. Prof
Psychol-Res Pr. 2001 Apr;32(2):135141.
18. France CR, Masters KS, Belar CD, etal. Application of the compe-
tency model to clinical health psychology. Prof Psychol-Res Pr. 2008
Dec;39(6):573580.
19. Philadelphia CsHo. Psychology Education and Training
Program. 2014. http://www.chop.edu/professionals/
psychology-training-program/home.html.
20. American Psychosocial Oncology Society. Online Education. 2014.
http://www.apos-society.org/professionals/meetings-ed/webcasts.
aspx. Accessed January 16,2014.
21. (IPOS) TIP-OS. Multi-Lingual Core Curriculum. 2014. http://
ipos-society.org/education/core_curriculum/core_curriculum.aspx.
Accessed January 16,2014.
22. Holland JC, Greenberg DB, Hughes MK, APOS Institute for Research
and Education. Quick Reference for Oncology Clinicians:The
Psychiatric and Psychological Dimensions of Cancer Symptom
Management. Charlottesville, VA:American Psychosocial Oncology
Society;2006.
23. APOS Institute for Research and Education, American Psychosocial
Oncology Society. Quick Reference for Pediatric Oncology
Clinicians:The Psychiatric and Psychological Dimensions of Pediatric
Cancer Symptom Management. Charlottesville, VA:American
Psychosocial Oncology Society;2009.
24. Grassi L, Riba MB. Clinical Psycho-Oncology:An International
Perspective. Chichester, West Sussex:John Wiley & Sons;2012.
25. Chochinov HM, Breitbart W. Handbook of Psychiatry in Palliative
Medicine, 2nd ed. Oxford; NewYork:Oxford University Press;2009.
 CHAPTER94
Educating and Training
Professional Social Workers
in Psycho-Oncology
Victoria Kennedy, Kathryn M.Smolinski,
Yvette Coln, and JamesZabora
INTRODUCTION
Cancer creates multiple challenges for any newly diagnosed
patient, as well as every family member. Consequently, this
experience must be viewed within psychological and social
contexts. The complexity of the psychosocial problems asso-
ciated with cancer generate a demand for multi-skilled social
work practitioners who are trained to provide distress screen-
ing, comprehensive assessments, and evidence-based therapeu-
tic interventions across the cancer continuum. In many ways,
oncology social workers should consider a cancer prevention
and control model where their skills are applied in primary,
secondary, and tertiary prevention. In this way, oncology social
workers could engage in smoking cessation programs, access to
screening and early detection initiatives, as well as the provi-
sion of a range of interventions following the diagnosis of can-
cer. With a primary focus on tertiary prevention or minimizing
the effects of cancer after the diagnosis, oncology social work-
ers can provide evidence-based psychosocial care at diagnosis,
during treatment, into survivorship, as well as at the end of life,
and they may provide bereavement services for family mem-
bers. Oncology social workers function as dynamic members
of the transdisciplinary cancer care team in a wide variety of
healthcare settings, including academic cancer centers, com-
munity hospitals, health systems, community-based agencies,
ambulatory clinics, home care, hospice programs, and private
practice.
Oncology social workers guide the oncology team to move
beyond the disease process in order to attend to the psychological
and social matters that may affect the patients capacity to partici-
pate in treatment. In many ways, rather than serving as a conduit
between patient and staff, oncology social workers enable patients
and family members to facilitate optimal responsiveness and com-
munication around treatment goals, disease management, and
psychosocial concerns in interaction with the healthcare team. In
this important role, the oncology social worker becomes a valued
member of theteam.
Across cancer care settings, social workers are estimated to
provide approximately 75% of the mental health services overall.1
Social workers possess unique knowledge and expertise in issues
related to ethnicity, culture, economics, family, support networks,
symptom management, bereavement, trauma, interdisciplinary
practice, and healthcare system interventions.2 The 2007 Institute
of Medicine (IOM) report, Cancer Care for the Whole Patient,
outlines the significance of providing quality psychosocial care to
individuals affected by cancer. As the report explains,
Psychological and social problems created or exacerbated by
cancerincluding depression and other emotional problems; lack
of information or skills needed to manage the illness; lack of trans-
portation or other resources; and disruptions in work, school, and
family lifecause additional suffering, weaken adherence to pre-
scribed treatments, and threaten patients return to health... all
patients with cancer and their families should expect and receive
cancer care that ensures the provision of appropriate psychosocial
health services.3
This chapter describes the skills, roles, and competencies
required of oncology social workers, and the multifaceted educa-
tion, training, and supervision needed to prepare the social worker
to work effectively with cancer patients and families. Included
are the roles that oncology social workers play in training and
supervising other social workers, providing evidence-based care,
supporting team members, advocating for system change, and
conducting research.
A VALUED MEMBER OF
THEONCOLOGYTEAM
Oncology care has been one specialty where medical social work-
ers have practiced in hospitals, outpatient clinics, home care and
hospice agencies, community wellness programs, patient advocacy
690 SectionXV professional education and building supportive care programs
organizations, and other clinical settings. These experiences, and
the empirical study of this work, have enabled oncology social
workers to accumulate a vast body of knowledge about the inter-
actions of people with cancer in their environments. Oncology
social workers also intervene with other oncology professionals
who experience significant levels of stress in providing care to this
population.48
Second, oncology social work is founded upon broad exposure in
graduate education and post-graduate training that addresses the
variety and breadth of therapeutic interventions that social work-
ers incorporate into their practice. The person-in-environment
ecological framework of social work 9 emphasizes both psycho-
logical and sociological theories that prepare social workers to
design and implement interventions aimed at simultaneously
strengthening individual adaptation and environmental respon-
siveness.911 Therapeutic models introduced in graduate and
postgraduate social work education include, but are not limited
to, knowledge and skill competencies in systems theory, psycho-
dynamic theories, stress theory, brief therapies, problem-solving,
crisis intervention, cognitive-behavioral approaches, conflict
resolution, and supportive-expressive interventions. In addition,
graduate educational programs also include training in address-
ing sociocultural disparities, social policy, administration, and
community organization.
Third, the social worker brings to the oncology team not
only a clearly defined set of humanistic values, but expert
problem-solving skills as well. Social workers enable patients and
family caregivers to solve problems and to manage difficult deci-
sions, often in the face of great uncertainty. Social workers serve as
a component of the healthcare system by supporting, advocating,
informing, educating, sensitizing, counseling, and synergizing
all available resources and inherent strengths to the benefit of the
patient, family, and healthcareteam.3
EDUCATION AND TRAINING
The Council on Social Work Education (CSWE) sets eight major
standards for the accreditation of social work degree programs
in the United States. Abachelors degree in social work (BSW) is
the minimum education required to become an entry-level social
worker in many social service organizations. An undergraduate
bachelors degree typically requires both liberal arts education
curricula and social work courses, which focus on social work
values and ethics, working with diverse populations, social wel-
fare policies, and human growth and development. Abachelors
degree in social work usually takes four years to complete and
requires one or more internships for graduation.
Social workers wishing to further their education and specialize
in an area such as healthcare or oncology social work generally
must seek an advanced degree. Most oncology social workers have
a minimum of a masters degree in social work with state licen-
sure. The masters of social work degree (MSW) requires a bach-
elors degree before admission to an MSW program, and given a
norm of 60 credits, typically requires a minimum of two years to
complete, along with two supervised internships. The MSW is by
far the most common degree title used by graduate social work
schools; however, some schools may confer an MSSW (master
of science in social work) degree. Within some schools of social
work, a specific focus on healthcare social work (and in a few, spe-
cifically oncology social work) exists. These programs have devel-
oped courses that focus on theories and models, evidence-based
interventions, and outcomes assessment.
The PhD (doctor of philosophy in social work) and DSW (doc-
torate of social work) are the final degrees offered in the field of
social work. These degrees are available to graduates of masters
degree programs in social work or related fields and typically
prepare a social worker for positions in academia, research, pro-
gram planning, administration, and clinical supervision. The
PhD in social work is viewed as a research or academic doctoral
degree, while the DSW is considered a professional or clinical
doctoral degree. Programs such as Catholic Universitys National
Catholic School of Social Service actively seek support from the
American Cancer Societys doctoral training grants in oncol-
ogy social work in order to create new clinician-scholars. All
states have licensure requirements for social workers (require-
ments vary from state to state). States require the completion of
a bachelors or masters degree in social work from an accredited
school, along with the successful completion of an Association
of Social Work Boards (ASWB) examination. The ASWB is the
association of boards that regulate social work practice; it devel-
ops and maintains social work licensing examinations used in
all US states and several Canadian provinces. Continuing educa-
tion is typically required to maintain licensure, 3040 approved
hours every twoyears.
Continuing education is offered through agency, hospital-based,
and university-based programs such as the oncology social work
clinical skills training courses offered in a few major cancer cen-
ters throughout the United States, fellowships in oncology social
work provided through the American Cancer Society, profes-
sional conferences, online training and programs offered by
the Association of Oncology Social Work (AOSW), Association
of Pediatric Oncology Social Workers (APOSW), American
Psychosocial Oncology Society (APOS), National Association of
Social Work (NASW), and other organizations.
Social workers are among the psychosocial care providers whose
practice is regulated through professional licensure in every state
in the United States, to ensure a high level of professional training
and practice. Additionally, an Oncology Social Work Certification
(OSW-C) is offered by the Board of Oncology Social Work12 to
individuals who have graduated from a CSWE accredited pro-
gram and have at least three years of post-masters degree work
in oncology social work or a related field. Finally, AOSW has pub-
lished both the Oncology Social Work Standards of Practice13 and
Oncology Social Work Scope of Practice14 to guide social work pro-
fessionals in psycho-oncology.
BASIC TENETS OF
ONCOLOGYSOCIALWORK
While providing care and support to patients, families, and the
healthcare team, oncology social workers must be knowledgeable
about life stages of development, family functioning, cultural
and spiritual influences, evidence-based interventions, symptom
management, financial issues, community resources, and inno-
vations in the field of psycho-oncology.15 The following basic
tenets form the core knowledge competencies for the profession.
 Chapter94 educating and training professional social workers
First, the patient and family are viewed as the focus of care, and
cancer is viewed as an illness that affects the entire family.11,16
Social and psychological theories such as stress theory support
a focus on the internal and external resources that each patient
possesses through an emphasis on working within a person-in-
environment approach. This view maintains that all individuals
are part of an intricate web whose central ties begin with the fam-
ily. Training in the biological, psychological, and social theories
of development and adaptation, therefore, prepares social workers
to assist individuals and their support network. For the patient
with a lower level of internal resources, the social worker seeks
to enhance a sense of mastery, increase optimism, or improve
problem-solving skills. For those individuals with lower levels
of external resources or limited social support, the social worker
attempts to enable the patient to develop a new or expanded sup-
port network. Social works focus on the larger system of com-
munity and society extend the role beyond that of individual
counselor or family therapist to ensure that the healthcare system
and the larger community are responsive to the needs of individ-
ual cancer patients and their families.11,16
Second, oncology social work promotes the awareness and
understanding that there is an interrelationship between the
medical condition of the patient and the patients ever-changing
biological, psychological, social, informational, and practical
concerns. Social workers promote patient/family independence
and self-reliance by using a strengths-based approach focused
on skill-building and problem-solving. At the very core of this is
a belief that people are resilientthat they have the capacity to
adapt, change, and maintain hope in the face of significant dis-
tress and uncertainty. Comprehending the need for targeted social
work interventions across the disease continuum is at the core of
the oncology social workers ability to listen to, and understand,
the patients needs within their psychological, social, and medi-
cal context.3 The social work perspective illuminates the impact
that various life circumstances and events may have on treatment
adherence, quality of life, and potentially survival for the patient
and family (see Box94.1).
Third, vast individual differences in the responses to
cancer require interventions such as psycho-education,
cognitive-behavioral, disease management group, short-term
counseling or psychotherapy, and problem-solving. Awareness of
diversity is at the core of social work values and practice. Social
Box 94.1 Basic Tenets of Oncology SocialWork
1. The patient and family are the focus ofcare.
2.Psychosocial problems can have a significant impact on
adjustment to illness, symptom management, quality of life,
healthcare utilization, and even potentially survival.
3.The diverse and unique needs of patients and families
require targeted, evidence-based, and culturally sensitive
interventions.
4.Patients and families benefit from assistance in enabling
them to remove barriers to access appropriate care and valu-
able community resources.
691
workers understand that patient receptivity to treatment is influ-
enced not only by psychological and social variables, but also by
cultural factors as well. Cultural and developmental factors influ-
ence the patient/familys view of the patient role, all of their reac-
tions to illness and treatment, and the meanings that each of them
attach to the diagnosis of cancer, each phase of treatment, adverse
reactions, and treatment outcomes. Fourth, oncology social work-
ers are well versed in navigating complex medical, social, finan-
cial, and community systems. The social workers understanding
of the disease, treatment processes, hospital, and community
resource systems make the social worker an effective mediator
for patients and families who are often overwhelmed by the sys-
tem and the stressors of the illness. Helping patients successfully
navigate the healthcare system also benefits the system itself by
expediting care and enabling patients to fully realize the possible
benefits of treatment with minimal disruptions due to psychoso-
cial complications.17
ONCOLOGY SOCIAL WORK:CORE
COMPETENCIES
An oncology social worker trains to become expert in under-
standing the psychological, emotional social, informational,
financial, and practical domains of patients and families. This
insight leads to a psychosocial formulation of the patient, family,
and social system within a context of resiliency and hopefulness
that focuses on maximizing internal and external resources in
the midst of social change. Within oncology, social workers may
further specialize in areas such bone marrow transplant, pallia-
tive care, disease-specific clinics, radiation, pediatrics, geriatrics,
and so on.3,18 The knowledge and skill base of an oncology social
worker must therefore be multifaceted and comprehensively
framed across the cancer trajectory (see Table94.1).
The National Comprehensive Cancer Network (NCCN)
Guidelines for Distress Management (v.1.2008) extensively out-
lines social work services that are recommended when a cancer
patient has a psychosocial or practical problem. These include ser-
vices such as the following:
1. Screening, assessment, and measurement of outcomes;
2. Individual, family, and group counseling;
3. Symptom management;
4. Discharge and transitional care planning;
5. Information and referral to valuable resources;
6. Advocacy, social change, and patient navigation;
7. Administration and clinical supervision;
8. Staff intervention and support;
9. Training and supervision with volunteers.
Screening, Assessment, and Outcomes
Oncology social workers utilize evidence-based principles to
screen for distress and to develop a multimodal approach to
assessment. While screening seeks to identify patients with
greater levels of psychosocial vulnerability, a comprehensive bio-
psychosocial-spiritual assessment needs to focus on issues that are
692 SectionXV professional education and building supportive care programs

Table94.1 Oncology Social Work Competencies:Psychosocial Care of the Whole Patient andFamily

Screening and assessment
Evidence-based interventions adjustment to the
diagnosis, treatment, survivorship, and/or end of life cognitive behavioral approaches, disease management skills, short-term psychotherapy, and
Symptom management
Discharge and transitional care planning
Information and referral
Advocacy and system navigation
While utilizing rapid screening tools through the use of self-report instruments or online
screeningprograms, identified patients and families are offered comprehensive psychosocial
assessments.Effectively communicate assessment results to the patient, family, and heathcare team as
appropriate.
Employ appropriate interventions with individuals, families, and groups, including psycho-education,
problem-solving.
Perform psychosocial cancer assessment and explain how symptoms such as fatigue, insomnia, and pain
vary from patient to patient.
Describe ways to manage these symptoms across the disease continuum and the influence of family
relationships, culture, spirituality, decision-making, healthcare beliefs, and comorbid stressors.
Understand the different pharmacotherapy and non-pharmacotherapy options.
Educate patients and families about the management of cancer symptoms, including myths and
misconceptions and fears of addiction for pain management.
Advocate for symptom management throughout the course of the disease continuum, including during
treatment, recurrence, survivorship, and end-of-life care.
Conduct assessment of discharge needs in collaboration withteam.
Be knowledgeable about insurance, entitlements, and financial resources.
Provide information, patient education, resource linkage, community services, practical assistance, financial
aid, environmental interventions as appropriate.
Know access and eligibility requirements for institutional, local, and national resources for psychiatric,
psychological, social, and spiritual needs.
Share information with staff, patients, and families.
Routinely re-evaluate resources for availability and relevance.
Advocate for patient/family needs, inpatient, outpatient, at home, and in the community with staff,
extended family, and caregivers.
Advocate at the administrative and policy level in the local and national arenas. Provide system navigation
support and coordination for seamless delivery of care.

amenable to change and that promote dignity. While dignity can
be defined as the state of feeling worthy or esteemed, research-
ers have identified specific factors that promote dignity among
patients with cancer. Pain, intimate dependency, hopelessness and
worthlessness, depression, reduced informal and formal social
support, and decreased quality of life contribute to or diminish
a patients sense of dignity at a time when treatment options are
being considered. If these concepts form the basis for assessment,
then methods could be employed that address depression, foster
hope, and enhance functional independence19 (Hack et al., 2004).
At a minimum, a comprehensive psychosocial assessment should
address the elements detailed in Table 94.1. Social workers must
be competent in the use of screening and assessment methods,
including a working knowledge of the diagnostic categories in
the Diagnostic and Statistical Manual of Mental Disorders (DSM),
as well as employing advances that technology25 brings into the
clinical setting, such as touch-screen registration and electronic
medical records (EMR). The oncology social worker must also be
trained in using the findings from assessment to develop a psy-
chosocial care plan that is evidence-based and focused on early
identification of problems, strength-based interventions, and
mobilization of practical problem-solving skills that enable the
patient and family to identify and link with supportive resources.2
If distress screening is not employed, then oncology social work-
ers can anticipate referrals, as detailed in Table 94.2.
PSYCHOSOCIAL ONCOLOGY RESEARCH
Research is a required component of MSW training, as it facili-
tates the development and teaching of evidence-based knowledge
and skills required to practice social work. The Institute for the
Advancement of Social Work Research, created in 1992, reflects
the professions recognition of the importance of research in both
evaluating practice and furthering knowledge of people and their
problems. One of the leading interdisciplinary journals of psycho-
social oncology care, the Journal of Psychosocial Oncology, which
is AOSWs official journal, serves as a forum for sharing research
and clinical data. Many of the articles published in this quarterly
journal reflect the prevailing practitioner-scholar model, adopted
by the oncology social work field, which underscores the need for
empirically informed practice.3638
In 1994, AOSW created the Social Work Oncology Research
Group (SWORG), which promotes research relevant to oncol-
ogy social work through multi-institutional collaboration and
function. In 2003, AOSW published A Social Work Guide to
Conducting Research in Psychosocial Oncology to help guide and
support AOSW members to engage in evidence-based, empirical
 Chapter94 educating and training professional social workers 693

Table94.2 Types of Social Work Referrals

Standard Referral Urgent Referral Emergent Referral

Adjustment to illness
Problem-solving
Treatment decision-making
Support group
Psychoeducational group
Medical insurance assistance
Durable medical equipment
Hospice and homecare services
Transportation options
Housing resources
Entitlement programs
Grief/bereavement support
Patient and/or family distress related to: Suicidal ideation
Poor prognosis Substance abuse
Deteriorating condition Child, spouse, or elder abuse
Poor test results Homicidal ideation
Difficult/complex procedures Signing out AMA
Diagnostic tests Treatment refusal
Uncontrolled anxiety and/or depression
Pain/symptom management issues
Non-adherence to treatment
Social/behavioral issues impacting treatment
Staff distress and/or difficulty coping

research and data collection.23 Ongoing projects include an explo-
ration of the prevalence of distress across the disease continuum
from diagnosis to terminal illness, and an examination of the psy-
chosocial needs of high-distress patients.
CONCLUSION
Oncology social workers are highly trained, skilled clinicians who
function as dynamic members of the healthcare team. Social work
is dedicated to delivering evidence-based, quality psychosocial
care rooted in a value system that empowers individuals, families,
communities, and systems toward optimal functioning and qual-
ity of life. Oncology social workers require intensive didactic and
experiential training beyond the masters degree that addresses the
specific psychosocial issues and social work interventions across
the continuum of the cancer experience. To work in oncology,
social workers must have compassion, self-awareness, and com-
mitment to teamwork, personal growth, and hope in the face of
adversity. The depth of personal and professional satisfaction for
the social worker in oncology can be profound and life-changing
as one finds a deeper meaning to life andwork.
Oncology social workers develop and deliver a wide variety
of interventions and programs to facilitate effective coping with
cancer, its treatment, survivorship, palliative care, end of life, and
bereavement services. Empirical studies in psychosocial oncology
have documented the efficacy and cost effectiveness of social work
interventions. Future social work research and clinical literature
will continue to contribute to the understanding of how best to
promote psychosocial health and well-being for cancer patients,
survivors, and their caregivers by defining and expanding best
practices in oncology socialwork.
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 CHAPTER95
Education of Nurses in
Psycho-Oncology
Terry A.Badger, Barb Henry, and Ruth McCorkle
Nurses, who represent the largest of the healthcare professions
(approximately 3 million), are commonly on the forefront of
patient care in oncology practice. Nurses are responsible for the
assessment and referral of psychosocial problems demonstrated by
patients and their families, regardless of practice setting.1 When
compared to other professional groups, nurses often experience
the most concentrated exposure to intense emotions given the
extended time spent with patients and their families. Despite the
daily exposure to potent emotions in the practice setting, nurses
receive little formal education regarding the psychological aspects
of cancer. The purpose of this chapter is to describe the education
of nurses, with an emphasis on psycho-oncology, and to discuss
some ways to address some of the deficiencies that currentlyexist.
NURSING EDUCATION
Before discussing the specifics of nursing education related to
oncology, a general discussion of nursing and nursing education
in the United States is warranted. There are four major pathways
to becoming a registered nurse (RN):obtaining a two-year asso-
ciates degree in nursing from a community or junior college, a
three-year hospital-based diploma, a four-year baccalaureate
degree from a college or university, or a baccalaureate non-nursing
degree with a graduate level entry to a masters degree.2 All state
boards of nursing, except those in North Dakota and NewYork,
accept these three educational paths as appropriate academic
preparation for RN licensure.
Nursing curricula are reviewed against specific standards, and
there are two organizations that accredit nursing education pro-
grams. The National League for Nursing Accrediting Commission
(NLNAC) accredits nursing programs across all levels, from prac-
tical nursing programs to doctoral programs. The Commission on
Collegiate Nursing Education (CCNE), an independent arm of the
American Association of Colleges of Nursing (AACN), accred-
its programs offering baccalaureate, masters, and doctorate of
nursing practice degrees in nursing. Although NLNAC does not
require institutions to address specific knowledge and skills (e.g.,
psychosocial), it does require that schools of nursing build their
curricula around guidelines for nursing practice selected from
those established by a number of recognized nursing organiza-
tions. One example is the Pew Health Professions Commissions
publication 21 Competencies for the Twenty-First Century, which
recommends a set of core competencies related to psychosocial
health services. 2 For example, NLNAC core competencies are
that nurses should (1) incorporate the psychosocial-behavioral
perspective into a full range of clinical practice competencies,
(2) involve patients and their families in decision-making pro-
cesses, (3)help individuals, families, and communities maintain
and promote healthy behavior, and (4) provide counseling for
patients in situations where ethical issuesarise.
The AACN identifies that nurses practice from a holistic base
and incorporating bio-psychosocial and spiritual aspects of
health.3 Content related to psychosocial health services are to
be taught throughout the curriculum, and must incorporate the
knowledge and skills identified by The Essentials for Baccalaureate
Education for Professional Nursing Practice.4 The Essentials docu-
ment lists core knowledge and skills for entry-level registered
nurses related to psychosocial health services (see Box95.1).
After completion of an accredited nursing program, gradu-
ates must pass the National Council Licensure Examination for
RNs (NCLEX-RN), administered by the National Council of State
Boards of Nursing (NCSBN). Psychosocial integrity content is a
relatively small percentage of questions on the exam, comprising
approximately 6%12%.4 The scope of nursing practice is deter-
mined by the state in which the nurse practices, and all practicing
nurses must have a current license if working as an RN. All states
require nurses to renew their licenses, usually annually, with some
states requiring evidence of continued education.
Psychosocial oncology content is typically taught in curricula
as part of the medical-surgical rotation, and includes a limited
number of didactic hours plus clinical experiences with cancer
patients. Another typical rotation in which nursing students have
experience with cancer patients is during hospice or long-term
care clinical experiences. Given the combination of inpatient
and community experiences typical of most nursing programs, it
would be highly unusual for a nursing student to not have experi-
ence caring for cancer patients and their families. However, there
is limited time in most programs devoted specifically to psychoso-
cial responses to life-threatening illnesses of individuals and their
families. Pre-licensure nursing students are typically exposed to
psychosocial concepts, such as depression and anxiety, as part of
their psychiatric-mental health nursing clinical experiences on
696 SectionXV professional education and building supportive care programs

Box 95.1 Selected Core Competencies for the Essentials of Baccalaureate Education

Graduatesmust
have the knowledge and skills to assist patients to access and interpret the meaning and validity of health information;
adapt communication methods to patients with special needs, that is, sensory or psychological disabilities;
use therapeutic communication within the nursepatient relationship;
provide relevant and sensitive health education information and counseling to patients;
perform a holistic assessment of the individual across the life span, including a health history that includes spiritual, social, cultural,
and psychological assessment, as well as a comprehensive physical examination;
assess physical, cognitive, and social functional ability of the individual in all developmental stages, with particular attention to
changes due toaging;
foster strategies for health promotion, risk reduction, and disease prevention across the lifespan;
use information technologies to communicate health promotion/disease prevention information to the patient in a variety of
settings;
evaluate the efficacy of health promotion and education modalities for use in a variety of settings and with diverse populations;
demonstrate sensitivity to personal and cultural definitions of health;
assess and manage physical and psychological symptoms related to disease and treatment;
assess and managepain;
demonstrate sensitivity to personal and cultural influences on the individuals reactions to the illness experience and end oflife;
anticipate, plan for, and manage physical, psychological, social, and spiritual needs of the patient and family/caregiver;
enable individuals and families to make quality-of-life and end-of-life decisions and achieve a peacefuldeath;
provide holistic care that addresses the needs of diverse populations across the lifespan;
understand the effects of health and social policies on people from diverse backgrounds;
advocate for healthcare that is sensitive to the needs of patients, with particular emphasis on the needs of vulnerable populations;
demonstrate knowledge of the importance and meaning of health and illness for the patient in providing nursingcare;
coordinate and manage care to meet the special needs of vulnerable populations, including the frail elderly, to maximize indepen-
dence and quality oflife;
coordinate the healthcare of individuals across the life span, utilizing principles and knowledge of interdisciplinary models of care
delivery and case management.

Adapted from AACN (2013). The essentials of baccalaureate education for profession nursing practice. Accessed at www.aacn.edu.

inpatient psychiatric units or community-based mental health
facilities, with little application of these concepts beyond patients
with severe mental illnesses.
Although the American Cancer Society (http://www.cancer.org/)
recommended guidelines in the mid-1990s regarding the curricu-
lum content they believed was essential for students to learn during
their basic education, this psychosocial oncology content is typically
not presented adequately. Clinical competencies recommended are
that baccalaureate graduates should have the ability to describe the
major psychosocial responses of the individual and family to can-
cer, and to communicate effectively with people with cancer and
their families. Although all students need content regarding how
depression and anxiety can influence life-threatening illnesses such
as cancer, and all graduate nurses need this when practicing in any
clinical setting, unfortunately this content is not systematically pre-
sented in most pre-licensure programs.
Graduate-level education at either the masters or doctoral level
provides advanced knowledge and skills in the theoretical basis
of nursing, advanced assessment, diagnosis and treatment, nurs-
ing research, trends and issues that influence healthcare, health
promotion and population health, informatics, and concepts such
as conflict, change, stress, teaching-learning, and organizational
systems and management. The competencies for advanced prac-
tice can be found in either The Essentials of Masters Education
for Advanced Practice Nursing5 or in The Essentials of Doctoral
Education for Advanced Practice Nursing.6 Advanced nursing
practice education has shifted from the masters to the doctoral
level with the hope that increasing numbers of advanced prac-
tice nurses will receive their doctorate of nursing practice (DNP)
degrees. The AACN has called for the DNP to be the degree
for all advanced practice nurses by 2015, but there are some
university-based schools that continue to offer advanced practice
education with the masters as the terminal degree.
According to the AACN,6 the graduates of doctoral programs
(PhD or DNP) in nursing have different goals and required com-
petencies. Both have a scholarly approach to the discipline and

Table95.1 Comparison of the PhD andDNP
Research Doctorate (PhD) Practice Doctorate (DNP)
Generating knowledge, Clinical knowledge development and
advancingnursing science translation of knowledge into practice
Emphasis on theory, Integrative practice experiences and an
meta-theory,research intense practice immersion experience
methodology, and statistics
Leading research teams Leadership in specialty practice
Dissertation:theory testing Final capstone project:development and
implementation of evidence-based practice
Adapted from Moran K, Burson R, Conrad D. The Doctor of Nursing Practice Scholarly
Project. Burlington, MA:Jones & Bartlett;2014.
a commitment to the advancement of the profession,7 but have
different educational preparation and performance expectations
following graduation. Table 95.1 shows a comparison of the two
doctoral degrees in nursing regarding educational preparation
and expected competencies.
There are few programs at the graduate level in which students in
oncology nursing have didactic and clinical experiences that focus
on psycho-oncology. Nurses receive education in assessment and
screening of cancer patients to determine if they need referrals to
psychosocial resources.1 Nurses can also obtain certification from
various organizations to recognize their specialized knowledge
and skills in a particular practice area. For example, the American
Nurses Credentialing Center (ANCC), an arm of the American
Nurses Association, certifies nurses in psychiatricmental
health nursing. Nurses who specialize in oncology nursing for
either children or adults can be credentialed by the Oncology
Nursing Certification Corporation (ONCC). Credentials include
Oncology Certified Nurse (OCN), Certified Pediatric Oncology
Nurse (CPON), Advanced Oncology Certified Nurse Practitioner
(AOCNP), and Advanced Oncology Certified Clinical Nurse
Specialist (AOCNS).8 The oncology exam varies in the percent-
age of content related to specific areas, but requires that nurses
have knowledge and skills in the areas of quality of life, symptom
management, psychosocial issues, and psychosocial management.
Evidence of continued competency is required when re-certifying
to include minimal practice, continuing education, and peer
review. Sample competencies for an oncology nurse practitioner
are found in Box95.2.
Currently, the number of certified oncology nurses (OCNs) is
small and reflects the national nursing shortage in all areas of
practice. It is estimated that the United States will need over one
million new nurses by 2020.9 Approximately 33,266 nurses are
OCNs, with an additional 2500 RNs with advanced preparation
and credentials in oncology (AOCNs). Among RNs with advanced
practice preparation and credentials in psychiatrymental
health, there are approximately 22,000. However, the major-
ity of psychiatricmental health advanced practice nurses
(APNs) are working with people with severe mental illnesses,
not with oncology patients and their families. Clearly, the lack
of adequate numbers of nurses with oncology training and
psycho-oncology education in particular will reach crisis pro-
portion for the projected number of cancer survivors and their
families in the coming decades.10 In the IOM10 report Delivering
Chapter95 education of nurses in psycho-oncology 697
High Quality Cancer Care:Charting a New Course for a System in
Crisis, there is a call for academic institutions and professional
societies focused on cancer care to develop inter-professional
education to train the workforce in team-based cancer care and
to promote coordination with primary/geriatrics and specialist
care teams. Further, care delivery organizations should require
that all team members, including nurses, have the necessary
competencies to deliver high-quality psychosocial cancer care,
as demonstrated through training, certification, or credentials.
To ensure sufficient adequately trained nurses, there will have to
be national collaboration among governmental and regulatory
bodies, academic institutions, professional societies, and health-
care organizations.
CURRENT TRENDS TO IMPROVE
PSYCHOSOCIAL ONCOLOGYCARE
The IOM (2008)11 report recommended an intensive focus on five
core competencies for health professions to improve workforce
performance: (1) patient-centered care, (2) work with interdis-
ciplinary teams, (3) employ evidence-based practice, (4) apply
quality improvement, and (5)utilize informatics (p.256). These
competencies provide clear direction for the knowledge and skills
needed for oncology nurses in the future (see Box95.3).
Most undergraduate and graduate nursing curricula include
information about patient-centered care, have interprofessional
educational opportunities, incorporate evidence-based practice in
their didactic and clinical experiences, discuss quality improve-
ment, and have informatics content. Nursing students who are
recent graduates have had exposure to the recommended content
for workforce improvement. Nurses who have been in practice for
a number of years may be less likely to have this knowledge and
these skills, depending upon their graduation year. For example,
required informatics content is a fairly recenttrend.
Most education about psychosocial oncology occurs after nurs-
ing school graduation. The Oncology Nursing Society (ONS),
the largest nursing organization dedicated to oncology nursing
practice with over 35,000 members, has recognized the need for
further nursing education regarding psychosocial oncology care.
The ONS Outcomes Resource Area (ons.org/outcomes/ measures/
summaries.shtml)12 contains guidelines for high-quality oncology
care impacting patient outcomes through evidence-based nursing
interventions. Putting Evidence into Practice (PEP) cards and web
pages are available for nurses to use at the bedside and as online
resources. Psychosocial oncology care resources include both
measurement and interventions for the following topics:caregiver
strain and burden, depression, and anxiety. Resources about many
other symptoms, such as fatigue, sleep-wake disturbances, nausea,
and constipation, are also provided. These resources are systemati-
cally updated by ONS, based on current research and practice. The
PEP cards are widely distributed and are presented at conferences,
and the content is also published in Clinical Journal of Oncology
Nursing, Oncology Nursing Forum, and ONS Connect. ONS has
been a leader in providing continuing education via workshops,
congresses, conferences, and web-based offerings. Another
resource for oncology nurses, Psychosocial Nursing Care Along the
Cancer Continuum, Second Edition, is published by ONSEdge.
In the past 10 years, many other organizations have focused
on the psychosocial care of patients and families, have
698 SectionXV professional education and building supportive care programs

Box 95.2 Oncology Nurse Practitioner Competencies (ONS,2007)

Graduates must have the knowledge and skillsto

perform a comprehensive assessment of functional status and the impact on activities of daily living, including but not limited to
the following domains:
Psychological
Role
Social
Cognitive
Physical
assess for the presence of psychological comorbidities (e.g., anxiety/depression, substance use), past and present coping skills, and
the psychosocial impact of the cancer experience;
assess concerns and issues related to sexual function, sexual well-being, and fertility of patients with a past, current, or potential
diagnosis of cancer, including the impact on relationships;
assess developmental, ethnic, spiritual, racial, socioeconomic, and gender variations in symptom presentation or illness experience
of patients with cancer;
assess the roles, tasks, and stressors of individuals, families, and caregivers and their ability to manage the illness experience (e.g.,
resources, support services, equipment, transportation, child care, anxiety, depression);
assess patients ability to navigate the complex healthcare system and the barriers to continuity, coordination, and communication
among multiple care providers;
determine the impact of comorbidities on the prognosis and treatment of patients with cancer;
diagnose acute and chronic psychological complications (e.g., anxiety, depression, substance abuse) and their influence on the
patients psychologicalstate;
collaborate with the multidisciplinary team, patient, family, and caregivers to formulate a comprehensive plan of care for patients
with cancer, including appropriate health education, health promotion, and health maintenance, rehabilitation, and palliativecare;
plan therapeutic interventions to restore or maintain an optimal level of functioning;
coordinate care within a context of functional status, cultural considerations, spiritual needs, family or caregiver needs, and ethical
principles;
consider comorbid conditions when implementing cancer treatment;
refer patients and families to appropriate support services;
establish caring relationships with patients, families, and other caregivers to facilitate coping with sensitive issues;
facilitate patient and family decision-making regarding complex treatment, symptom management, and end-of-lifecare;
assist patients with cancer and their families in preparing for and coping with grief and bereavement;
develop interventions with patients and families that are consistent with patients physiologic and psychological needs and values;
use evidence-based information to help patients with cancer and their families to make informed decisions;
assist patients with cancer and their families and caregivers to negotiate healthcare delivery systems;
refer patients to appropriate local, state, and national patient-support resources.

Adapted from ONCC, ONCC and certification information,2007.

provided webinars to improve skills, and have published guide-
lines to improve practice. These organizations include American
Psychosocial Oncology Society (APOS; http://www.apos-society.
org/), ACS, National Comprehensive Cancer Network (NCCN;
http://www.nccn.org/), Cancer Care, Lance Armstrong
Foundation (LAF; http://www.livestrong.org), National Cancer
Institute (NCI; http://www.cancer.gov/), National Comprehensive
Cancer Network (NCCN; http://www.nccn.org), and the Cancer
Support Community (http://www.cancersupportcommunity.
org/), among others. The NCCN provides a Distress Thermometer
and patient/caregiver guidelines to manage distress, as well as
clinical guidelines for oncology professionals.
As evidenced-base care becomes the standard, and is required
through accreditation organizations, oncology nurses need to
become more proficient in implementing the current guidelines and
standards. For example, following the IOMs evidence-based quality

Box 95.3 Knowledge and Skills for Providing Psycho-Oncology
Care (IOM,2008)
Communication with patients and families
Screening
Needs assessment
Care planning and coordination
Illness self-management
Collaboration across disciplines/specialties, working in teams
to link patients to psychosocial services
Outcomes assessment
Informatics
Adapted from IOM, Cancer Care for the Whole Patient:Meeting the
Psychosocial Health Needs,2008.
care standard, the American College of Surgeons Commission on
Cancer13 has mandated that all cancer centers it accredits must screen
for distress by 2015. ONS has also mandated that nurses conduct
psychosocial screening as part of routine cancer care. The directive
is clear:All oncology healthcare providers, including nurses, must
screen for depression or distress, identify and establish resources for
treatment, and follow up to see if psychosocial needs aremet.
Nurses who are involved in cancer care can incorporate routine
psychosocial assessment and referral into their comprehensive
care, taking advantage of current educational opportunities to
increase their skills.14 One way to begin is for nurses to utilize the
NCCN distress tool and follow the guidelines to assess emotional
distress in cancer patients.15 Healthcare institutions can take steps
to improve the education of nursing staff by encouraging and
providing incentives for continued education, certification, and
mentoring to implement psychosocial care. Advanced practice
nurses who specialize in psycho-oncology can provide education
and supervision to staff nurses to improve psycho-oncology care.
Cancer centers that currently do not have these specialized nurses
may wish to develop such positions to meet the IOM recommen-
dations and guidelines for obtaining or maintaining designation
as a comprehensive cancer center or for Magnet status.16 In addi-
tion, Schwartz Center Rounds (https://www.theschwartzcenter.
org) can be used to improve psychosocial care by supporting
oncology staff to prevent and limit burnout.
Psychosocial oncology education has improved in the past
decade, yet much remains to be done. Organizations must con-
tinue to disseminate standards and guidelines for psychosocial
care and require that psychosocial care be part of comprehensive
cancer care (e.g., APOS, NCI, NCCN, and ONS). In 2009, ONS
formulated a Psychosocial Project Team to improve psychosocial
oncology education for nurses.17 This team conducted a survey
of ONS members to measure psychosocial practice and educa-
tional needs. In 2010, the team added psychiatric APRNs to the
group that developed the web course Integrating Psychosocial
Care into Oncology Practice.18 This course will be offered quar-
terly to improve the education of nurses in practice. Healthcare
institutions should require that all nurses who work in oncol-
ogy have education in psychosocial care, particularly as this
Chapter95 education of nurses in psycho-oncology 699
care must be demonstrated as part of accreditation or if seeking
Magnet status.16
Nurses who are in the forefront of patient care, and who continue
to provide hands-on care for patients and their families during
intense emotional experiences, are in an unique position to meet
the recommended guidelines and standards of care by continuing
their own education. Nurses are ideally situated in the healthcare
system to assess and refer patients and their families for psycho-
social care. Nurses can ensure that patients and their families no
longer will report unmet psychosocial needs by working together
with other healthcare professions to provide quality cancercare.
REFERENCES
1. Badger TA, Henry B, McCorkle R. Education of nurses in
psycho-oncology. In Holland JM, etal., eds. Psycho-Oncology.
NewYork:Oxford University Press; 2010:594597.
2. National League for Nursing Accrediting Commission. (NLNAC).
NLNAC Accreditation manual with interpretive guidelines by pro-
gram type for post secondary and higher degree programs in nurs-
ing. 2006. http://www/nlnac.org, Accessed November 18,2013.
3. American Association of Colleges of Nursing. (AACN). The essen-
tials of baccalaureate education for profession nursing practice. 2008.
www.aacn.edu. Accessed November 18,2013.
4. National Council of State Boards of Nursing. (NCSNB). NCLEX-RN
Examination:Test plan for the National Council Licensure Exam
for Registered Nurses, effective April 2013. 2013. www.ncsbn.org.
Accessed November 22,2013.
5. AACN. The essentials for masters education for advanced practice
nursing. 2011. www.aacn.edu. Accessed November 18,2013.
6. AACN. The essentials for doctoral education for advanced practice
nursing. 2006. http://aacen.nche.edu. Accessed November 19,2013.
7. Moran K, Burson R, Conrad D. The Doctor of Nursing Practice
Scholarly Project. Burlington, MA:Jones & Bartlett;2014.
8. Oncology Nursing Certification Corporation. (ONCC). ONCC and
certification information. 2007. www.ons.org. Accessed November
20,2013.
9. Bureau of Labor Statistics (BLS). Economic and employment projec-
tions. 2012. http://www.bls.gov/news.release/ecopro.nr0.htm. Accessed
December 6, 2013.
10. Institute of Medicine (IOM) Delivering High-Quality Cancer
Care:Charting a New Course for a System in Crisis. Washington,
DC:The National Academies Press;2013.
11. Institute of Medicine (IOM). Adler NE, Page AE, eds. Cancer Care for
the Whole Patient:Meeting Psychosocial Health Needs. Washington,
DC:The National Academies Press;2008.
12. Oncology Nursing Society. (ONS). ONS homepage plus resources.
www.ons.org. Accessed November 7,2013.
13. Commission on Cancer. Cancer program standards 2012, version
1.1:Ensuring patient-centered care. 2012. http://www.facs.org/can-
cer/coc/programstandards2012.html. Accessed June 12,2013.
14. Fulcher CD, Gosselin-Acomb TK. Distress management:prac-
tice change through guideline implementation. Clin J Oncol.
2007;11(6):817821.
15. Fieler V, Henry B. How to give psychological support to patients with
cancer. 2003. Nursing Spectrum CE295. http://www.nurse.com/ce/
print.html?CCID=3309. Accessed February2008.
16. Aiken LH, Havens D, Sloan D. Magnet nursing services recognition
programme. Nurs Standard. 2000;14(25):4146.
17. Gosselin T, Crane-Okada R, Irwin M, Tringali C, Wenzel J.
Measuring oncology nurses psychosocial care practices and
needs:results of an Oncology Nursing Society psychosocial survey.
Oncol Nurs Forum. 38(6):729737.
18. Tringali C, Matey L, Fulcher C, Gosselin T, Henry BJ, Kastenhuber
T. Integrating psychosocial care into practice. Oncol Nurs Forum.
2011;38(2):E71.
 CHAPTER96
Education of Chaplains
in Psycho-Oncology
Stephen D.W. King, George
Fitchett,and Anne Vandenhoeck
INTRODUCTION
Ministering to the needs of the sick has been a central role of
clergy of different faiths for centuries. In the United States,
modern healthcare chaplaincy began in 1924 with the appoint-
ment of clergyman Anton Boisen as chaplain at a psychiatric
hospital in Massachusetts.1 The next summer Boisen led a train-
ing program for four theological students. In 1930, an organiza-
tion was formed to promote such programs to give theological
students experience in supervised care for people in crisis. 2
These training programs came to be called clinical pastoral
education(CPE).
In 1939, Russell Dicks, a hospital chaplain and CPE supervisor,
made a presentation on the work of chaplains at the American
Protestant Hospital Associations (APHA) annual meeting. 3
Dickss speech moved the APHA to appoint a committee to for-
mulate standards for hospital chaplaincy. Then, at the APHA
meeting in 1946, a group of chaplains active in APHA hospitals
formed the Association of Protestant Hospital Chaplains, one of
the first organizations of professional healthcare chaplains in the
United States3,4 and a precursor to todays multifaith Association
of Professional Chaplains(APC).
This chapter provides an introduction to healthcare chap-
laincy. It begins with an overview of the subject, and then
describes chaplains work caring for patients with cancer, includ-
ing their work in hospice and palliative care. These descriptions
are largely based on the US context. However, the following sec-
tion describes the training and work of healthcare chaplains in
Europe. The final section offers new developments in and future
directions for healthcare chaplaincy. Agood introduction to pro-
fessional healthcare chaplaincy can also be found in VandeCreek
and Burton.5
Because chaplains deal with both religion and spirituality, in
this chapter we refer to religion/spirituality (R/S). The umbrella
term for the types of care that chaplains provide is chaplaincy
care, which includes spiritual, religious, pastoral, emotional, and
existentialcare.
WHO ARE PROFESSIONAL
HEALTHCARECHAPLAINS?
The term chaplain is often used in a broad sense to refer to
any clergy, or other spiritual counselors, who work in institu-
tional contexts such as hospitals. In the United States, The Joint
Commission (TJC) specifies that patients have a right to care that
respects their spiritual values, and requires a minimal spiritual
assessment.6 Regarding standards for hospital chaplains, TJC
guidelines simply state that clinical chaplains, like other staff
should be qualified... by virtue of... education, training, expe-
rience, competence, registration, certification, or applicable licen-
sure, law or regulation. 7 In the absence of more explicit external
standards from organizations such as TJC, healthcare institutions
set their own requirements for their chaplains. Consequently, in
contrast to other professionals such as physicians or nurses, there
can be considerable diversity in the training and qualifications of
people who are called chaplains.
In this chapter, we focus on board certified chaplains (BCC),
who are accountable to a faith tradition, are appropriately aca-
demically and clinically educated, and have demonstrated com-
petence in healthcare chaplaincy before a review board. In 2004,
six major North American professional organizations concerned
with specialized ministries of pastoral care, pastoral counseling,
and trainingthe APC, the American Association of Pastoral
Counselors, the Association for Clinical Pastoral Education,
the National Association of Catholic Chaplains, the National
Association of Jewish Chaplains, and the Canadian Association
for Spiritual Careaffirmed a common set of certification stan-
dards for professional chaplains. They also affirmed Common
Standards for pastoral educators/supervisors, those who train
healthcare chaplains, and a Common Code of Ethics.
The Common Standards for BCCs begin with ordination or
commissioning, endorsement, and continued good standing with
ones faith tradition. Asecond requirement is completion of a grad-
uate theological degree. The third requirement is the completion of
four units of CPE, accredited by one of the collaborating groups.
 Chapter96
Clinical pastoral education (CPE) is a distinctive form of prepa-
ration for professional chaplaincy care in that it is multifaith; CPE
supervisors come from all major faith traditions, as do the CPE
students. CPE is a very experiential form of education. Aunit of
CPE includes a total of 400 hours of work, and 50%75% of the
students time is usually spent in supervised chaplaincy care. In
addition, CPE students participate in didactic seminars and in
a peer supervision group, where they discuss verbatim or case
reports of their clinical practice with their peers and supervisor.
Four units of CPE are often completed as a chaplaincy residency
year. In some cases, students elect to complete a two-year resi-
dency, which permits additional training in a specialized area, for
example, oncology chaplaincy.
The fourth requirement for certification is the submission of a
written application that includes two reports of ones chaplaincy
care and meeting an interview committee that includes other
BCCs. Competencies in 29 specific areas must be demonstrated in
the application and interview.
The principle of respect for the cultural and religious values of
others and prohibition of any attempts to proselytize others is cen-
tral to the Common Code of Ethics for BCCs. Other core ethical
principles include maintaining appropriate boundaries, promot-
ing the best interests of those served, and safeguarding confi-
dentiality. Accountability is also essential to BCCs:to their faith
group, to their employer, and to their certifying body through the
completion of 50 hours of annual continuing education and a peer
review every fiveyears.
PROFESSIONAL HEALTHCARE
CHAPLAINS:WHAT DO THEYDO?
Healthcare chaplains work in a variety of settings, including hos-
pitals, nursing homes, outpatient clinics, hospices, and special-
ized healthcare settings (e.g., cancer). Chaplains provide direct
chaplaincy care and contribute to the ethos of care in healthcare
organizations. Ideally, all healthcare providers provide some spiri-
tual care, perhaps by being open to the patients R/S concerns and
inquiring about them in a respectful manner. But chaplains have
greater training and education in chaplaincy care, focus more
of their time providing this care, and address the more complex
depths of a patients/family members R/S concerns.
Much of a chaplains work is at the bedside. Establishing a
caring relationship with patients/families is primary. For many
patients/families, a chaplain may offer empathic listening and
faithful presence. Chaplains may represent a caring community
or transcendence beyond their individual identity.8 Chaplains
perform or help establish protocols for R/S screening so that they
can better prioritize their activities. This is important because
few healthcare organizations have enough chaplains to see every
patient. Chaplains assess the needs, resources, and values of
patients/families. Chaplains then intervene as appropriate, for
example, nurturing the R/S strengths of those for whom R/S is
important, exploring R/S concerns, and providing guidance for
those seeking to deepen their R/S. Chaplains assess and explore
R/S distress that may be manifest or latent,9 which, beginning in
2015, is part of the Commission on Cancers mandated psychoso-
cial distress screening.10 Research is underway to determine the
best ways to screen for the R/S distress element of psychosocial
distress. Chaplains provide diverse services, including providing
education of chaplains in psycho-oncology 701
rituals and sacraments, helping process grief, and celebrating
good news. Chaplains help facilitate communication within fami-
lies and between patients/families and healthcare providers.
One study indicated that chaplains may be even more impor-
tant to families,11 especially since families often receive less psy-
chosocial support than patients. Chaplains help patients and
family members talk to one another about their common fears,
end-of-life preferences, the reality of a serious prognosis, and their
lives together.12
In some settings, chaplains may primarily care for patients
from the chaplains faith tradition. More commonly, chaplains
function as interfaith chaplains, meeting people where they are in
their own R/S traditions and addressing broader spiritual issues.13
When more specific R/S needs are identified, the chaplain may
collaborate with or refer to a representative from that tradition.
Many different people may benefit from a chaplains care. Some
people are strongly connected to R/S communities but are now
far from home and without that R/S support. Others have a strong
connection with their home R/S community, but their clergy may
feel uncomfortable in hospital visitation or be overwhelmed with
other duties. Many people are spiritual but have no faith com-
munity, no one with whom to talk about deeper spiritual issues.
Those without a spiritual identification may appreciate the care of
one human being to another.
Chaplains function as part of the multidisciplinary team.
Chaplains chart in the health information/medical record, doc-
umenting R/S assessments, care plans, interventions, and out-
comes.5,14 But the team also serves the chaplain, who depends
upon other staff for screening and engaging patients about R/S
needs, appropriate referrals, and updates about a patients sta-
tus or family dynamics.9 Staff care is another significant activity
for chaplains. This care ranges from informal conversations and
relationship building to formal counseling around a personal or
professional issue. Chaplains also provide rituals, support groups,
and in-services for staff. Many believe that staff who feel appreci-
ated and cared for, a value in its own right, tend to provide better
care to their patients, take less sick leave, and stay longer in their
jobs.5,15
Chaplains are involved in ethics decisions, both formally and
informally. Formally, chaplains participate on clinical ethics com-
mittees and consultation services, institutional review boards,
and research ethics committees. Informally, chaplains help
patients/families sort through their values and their implications
for healthcare decisions. Chaplains also provide another voice to
uphold the ethics and conscience of the organization in the face of
competing demands.
CHAPLAINS AND CANCER CARE,
PALLIATIVE CARE, HOSPICE
Recently chaplains have developed subspecialty certifications, the
first being in palliative care. Regardless of subspecialization, some
chaplains have more specialized training in cancer care, palliative
care, or hospice care than others. For example, a chaplain who
completes a CPE residency in an acute care setting may complete
a special project related to oncology chaplaincy. Other chaplains
may complete their residency at a major cancer center, or a hos-
pice, or pursue a second-year residency/fellowship focusing on
oncology, palliative care, and/or hospice.
702 SectionXV professional education and building supportive care programs
The above observations about who chaplains are and what they
do generally apply to oncology, palliative care, and hospice chap-
lains. But a diagnosis of cancer may create more fear than other
diagnoses and may stimulate questions such as Will Idie from
this? or How sick will the treatment make me? or Will my life
ever be the same again?
Chaplains in oncology, palliative care, and hospice often
develop deep relationships that offer patients and families emo-
tional support and comfort and permit in-depth exploration of
important issues. These chaplains are very attentive to theologi-
cal/existential themes such as hope, forgiveness, healing, mor-
tality, meaning, and suffering, what and where is the sacred, life
review and legacy work, and what happens at death.12,16 Palliative
care and hospice chaplains are typically well integrated into mul-
tidisciplinary teams, partially because hospice and palliative care
standards mandateit.
Chaplains must be attentive to developmental issues, especially
with children. Developmental stage, as well as culture, impact
personality, understandings of death, locus of safety, and specific
concerns (e.g., missing the prom). Pediatric oncology chaplains
take different approaches to their patients because of developmen-
tal differences. Cancer and its treatment may delay some develop-
ments and speed up others. As always, the chaplain must be in the
moment, following the lead of the child, while being respectful,
genuine, and, sometimes, playful.
More recently, researchers and providers have paid more atten-
tion to adolescents and young adults (AYAs), ages 1539, who often
face different issues and feel in-between, not fitting with either
pediatric or older adult patients. Consequently, there is a need for
chaplains and others to be more aware of the struggles unique to
this population and to different modalities for attending to the
medical and psychosocial issues that AYAs uniquely experience.
With the exception of hospice chaplaincy, which is often
home-based, most chaplains work in inpatient settings. However,
a growing number of cancer centers chaplain departments are
investing more of their staff resources to outpatient care. It is in
the outpatient setting that patients often learn of a diagnosis or
recurrence of disease, of change in prognosis, or of a major com-
plication. The outpatient clinic may be the place where a patient
hits the wall, emotionally and physically, after months of treat-
ments, or wants to explore R/S or other existential concerns.17
Furthermore, because treatments are increasingly performed in
outpatient settings and can extend over months, and because can-
cer often has become a chronic illness, when there is continuity
between outpatient and inpatient settings, chaplains can develop
long-term relationships that are supportive and often transforma-
tive.18 Two published case studies provide in-depth descriptions of
chaplains care with oncology outpatients.19,20
In recent years, Oregon and Washington adopted death with
dignity laws that give patients, most often cancer patients, a sense
of greater control and independence as they make end-of-life deci-
sions.21 These laws also present greater ethical/moral dilemmas
for providers, staff, and patients/families. As more states consider
similar laws, chaplains and others will be needed to help patients/
families, as well as providers, explore their existential distress, val-
ues and conflicts, and emotions.
While chaplaincy all over the world has many characteristics in
common, there are important national differences in how chaplains
are trained, hired, and integrated. Since space does not permit us to
describe chaplaincy in all countries, we focus on healthcare chap-
laincy in Europe. (For a series of articles about chaplains in countries
outside the United States, see the archives of the Advocacy column
in the chaplaincy e-newsletter, Plain Views [www.plainviews.org],
especially Volume 5, 2008. The website of the International Council
on Pastoral Care and Counseling [ICPCC] [www.icpcc.net] also has
links to chaplaincy networks around the globe.)
CHAPLAINCY INEUROPE
European chaplains would easily recognize themselves in the
preceding description of what chaplains do in general and in the
context of cancer and palliative care. Like their North American
colleagues, European chaplains work in a variety of settings.
The origins of chaplaincy in Europe are similar to those in the
United States. Since the rise of Christianity in Europe, there has
always been some form of attending to the R/S needs of the sick.
Countless Christian religious orders founded healthcare institu-
tions, where spiritual care was also offered.
In Europe, education, training, and requirements for chaplains
are very diverse and differ by country.22 In some European coun-
tries, chaplains have adapted the CPE model, but in ways that fit
each national context; for example, an element may not be part of
chaplains training but rather is required within the first years of
employment. Other countries have never adopted the CPE con-
cept fully and have developed their own version of supervision.
One simply cannot talk about the same three basic certification
requirements for European chaplains as exist for BCCs in the
United States. Among this great diversity, there are three essential
factors that determine the contemporary settings for chaplaincy
in each European country: its culture, its healthcare system,
and its religious history. Instead of describing those factors for
every one of the 28 countries that currently are members of the
European Union, we outline the pattern in four major groups of
nations. Acommon factor is the trend toward professionalizing
chaplaincy, as can be measured by the increasing number of pro-
fessional associations for chaplains.
The first group consists of countries that struggle to develop
professional chaplaincy due to political and economic issues that
are a hindrance in the training, hiring, and integrating of chap-
lains. Either the political history of a country (for example, the
communist regime) prevented the development of chaplaincy, or
the priorities of the churches led them to focus on parish/commu-
nity care rather than healthcare. Alocal priest, vicar, or volunteer
will visit sick church members in the hospital. Few chaplains are
hired by healthcare institutions, and, if they are, they can hardly
survive on the wages they receive.
The second group includes countries that recently started pro-
fessional chaplaincy and are growing strong. Chaplains in those
countries are advocating for their profession, seeking professional
training, even abroad, and are founding professional associations
for chaplains. They often face the challenge of low wages, low
esteem among other healthcare professions, and a lack of supervi-
sors and specialized training. Despite their challenges, they con-
tinue to grow strong as professional chaplains.
These first two groups were distinguished by where they are in
the development of professional chaplaincy. The following two
groups are defined by the faith traditions represented in their pop-
ulations. European countries where one faith group is dominant
 Chapter96
form the third group. Most chaplains in these countries belong
to the dominant faith group (Protestant or Catholic). If one faith
group is dominant because the majority of the population belongs
to that religious tradition, then multifaith spiritual care services
are rare. Chaplains from the majority group generally visit every-
one who requests their support or is referred to them. If a patient
belongs to another faith group and desires to talk to someone
from their tradition, the chaplain will do the necessary work to
make that happen.
The last group consists of countries that opt for multifaith
chaplaincy. The plural society in these countries leads to a need
to include chaplains from non-Christian faith groups. The United
Kingdom and the Netherlands would be two prime examples.
Multifaith chaplaincy in these countries is expressed in mixed
teams in each healthcare setting (i.e., each hospital decides which
faith groups will be represented).
Although chaplaincies are organized very differently through-
out the nations of Europe, chaplains do come together. The
European Network of HealthCare Chaplaincy (ENHCC) gathers
representatives of associations and faith groups every two years
(http://www.enhcc.eu). This organization started in 1990 when
chaplains from several European countries felt the need to share
their experiences. Out of that initiative the European Network
was founded in2000.
The European Network consists of representatives from
churches, faith groups, and national associations. It is rooted in
Christianity, as expressed in European cultures, but is open to
representatives of other faith groups. During its biennial consul-
tation the network aims to promote high standards for healthcare
chaplaincy and to work for the development of professional guide-
lines required to minister to the spiritual and religious needs of
patients, families, and staff. The Network has grown steadily in
the number of participating countries and organizations.
The European Network respects the diverse perspectives and
organizational modes of its members. Nevertheless, it aims to
work on common statements that will inspire and promote chap-
laincy. In 2002, the European Network agreed on Standards for
Healthcare Chaplaincy (http://www.enhcc.eu/turku_standards.
htm). The Standards are meant to be a point of reference and a
guide for all faiths and denominations. In 2006, the Network
agreed on Standards for palliative care (http://www.enhcc.
eu/060519_palliativecare.pdf). The Standards were inspired by
the work done in the United Kingdom regarding the value and
integration of spiritual care in palliative care (see the work of
the Association of Hospice and Palliative Care Chaplains; http://
www.ahpcc.org.uk/pdf/standardsguidelines2006.pdf). Spiritual
care in cancer care and palliative care is a priority for most
European chaplains. In 2012, the ENHCC issued a statement on
interdisciplinary work (http://www.enhcc.eu/netherlands12_
statement_english.pdf).
European chaplains are also involved in other initiatives that
promote spiritual care in the context of oncology and palliative
care. The Spiritual Care Taskforce of the European Association
for Palliative Care would be a prime example. Its main goal is to
support spiritual care within palliative care through recognition,
research, education, implementation, and resources. In 2012, the
Spiritual Care Taskforce carried out a survey on spiritual care
research priorities (http://www.eapcnet.eu/Themes/Clinicalcare/
Spiritualcareinpalliativecare.aspx).
education of chaplains in psycho-oncology 703
RECENT DEVELOPMENTS AND
FUTURECHALLENGES
In 2009, the APC affirmed the first Standards of Practice (SOPs)
for professional chaplains. These identify areas such as assess-
ment, delivery of care, documentation, teamwork, ethics, staff
care, research, leadership, and continuous quality improvement.
SOPs have been written or are in discussion for acute care settings,
hospice, palliative care, and others. These offer a framework both
for articulating to others what chaplains do and for guiding fur-
ther evaluation of and planning for chaplaincy services.
Further, in an age of evidence-based care, there is growing
attention to and efforts toward enhancing chaplains research.
Chaplains need to be able to read and understand research and
learn to integrate insights from relevant research into their pro-
fessional practice. 23 Chaplains also need research, conducted by
themselves or with professional colleagues, that evaluates their
interventions in order both to improve those interventions and to
demonstrate the effectiveness of thecare.
There are several challenges for chaplains that are especially
relevant for care for cancer patients and their families. One such
challenge is expanding the contexts in which chaplains services
are available, for example, outpatient care. In the United States,
trained and certified healthcare chaplains are more likely to be
found at larger, urban, teaching hospitals.24,25 Cancer patients
and their families who receive treatment in other contexts are less
likely to have access to a chaplain. Thus, consideration should be
given to increasing the number of creative training programs that
help clergy and other spiritual counselors become more famil-
iar with and comfortable in addressing the R/S issues faced by
cancer patients and their families. All training programs should
be attentive to training chaplains to be research-literate and
evidence-based and to provide effective outpatientcare.
From the time of diagnosis through difficult treatment, and, in
some cases, at the end of life, living with cancer often raises R/S
issues for cancer patients and their families. BCCs are members of
the healthcare team who have the training and expertise to help
cancer patients and their families address these issues and to pro-
vide chaplaincy care during this difficulttime.
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2. Hall CE. Head and Heart:The Story of the Clinical Pastoral Education
Movement. Decatur, GA:Journal of Pastoral Care Publications;1992.
3. Peachey K, Phillips CD. The college of chaplains:the first twenty-five
years. Caregiver J. 1996;12(1):617.
4. Montefalcone WR. General hospital chaplaincy. In:R Hunter, ed.
Dictionary of Pastoral Care and Counseling, expanded ed. Nashville,
TN:Abingdon Press; 2005:456457.
5. VandeCreek L, Burton L. Professional chaplaincy:its role and impor-
tance in healthcare. J Pastoral Care. 2001;55(1):8197.
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HL, Lackore KA, Lovejoy LA, Mueller PS. Predicting patients
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Pastoral Care Counsel. 2006;60(12):95107.
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2011;17:1937.
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chaplains faithful companioning a cancer patient. J Health Care
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Stewart FM. Implementing a death with dignity program at a com-
prehensive cancer center. N Engl J Med. 2013;368:14171424.
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 CHAPTER97
Training and Education
of Patient Advocates
AfafGirgis
Nothing about us withoutus!
European Cancer Patient Coalition
THE BEGINNINGS OF PATIENT ADVOCACY
Advocacy is defined in the Oxford Dictionary as the public
support for or recommendation of a particular cause or policy.1
Historically, the role of patient advocate was often ascribed to cer-
tain professions, such as nursing and social work, and some orga-
nizations still explicitly include advocacy in their role definitions.
For example, the American Nurses Association (ANA) includes
advocacy in the following definition of nursing:the protection,
promotion, and optimization of health and abilities, prevention
of illness and injury, alleviation of suffering through the diagnosis
and treatment of human response, and advocacy in the care of
individuals, families, communities, and populations.2
One-to-one peer support with others undergoing cancer treat-
ment is perhaps one of the earliest examples of patients advocating
on behalf of themselves or others affected by cancer. Terese Lasser
is credited with establishing Reach to Recovery in the United
States in 1952, following her own operation for breast cancer,
when she persuaded the medical community that patients could
benefit from the opportunity to talk with someone who had been
through a similar experience. Reach to Recovery grew to be widely
accepted around the world, with its introduction to Europe in 1974
by the American Cancer Society and Francine Timothy, who was
also reported to be highly successful in convincing medical staff
to open their hospitals to Reach to Recovery volunteers. At the
international level, this network of individuals, groups, and orga-
nizations held its first international conference in Copenhagen,
Denmark, in1980.3
Though peer support undoubtedly encompasses advocacy, the
more formalized role of the patient advocate developed later,
with many national organizations using the more inclusive term
consumer in reference to people affected by cancer, whether as
a patient, a person caring for a loved one with cancer, or a fam-
ily member or friend. The late 1980s also saw the development
of more organized groups that coordinated advocacy activities,
including the National Coalition for Cancer Survivorship (NCCS),
founded in 1986 to encompass the full spectrum of survivorship
issues related to living with, through, and beyond a cancer diag-
nosis, and later expanding its definition of survivor to include
family, friends, and caregivers.4 The NCCSs early work focused
on contributing to the literature and evidence base for quality
cancer care, including publications dealing with doctor/patient
communications, survivors rights, and how to be an informed
and knowledgeable healthcare consumer. The NCCSs activities
expanded to include convening other patient advocates to create
the Cancer Leadership Council (CLC), a patient-centered forum
of national advocacy organizations addressing public policy
issues in cancer. This organizations activities were instrumental
in the creation of the National Cancer Institutess Office of Cancer
Survivorship in 1996. As well as its significant advocacy activities
and achievements, NCCS developed an award-winning Cancer
Survival Toolbox to support people with cancer in demanding and
receiving quality cancercare.
It is widely acknowledged that the National Breast Cancer
Coalition (NBCC), established in the early 1990s by a small group
of consumers in the United States, was one of the most significant
cancer advocacy movements, its goal being to eradicate breast
cancer through action and advocacy.5,6 This grassroots movement
continues to be highly successful in its lobbying to increase the
nations attention to breast cancer, with its many successes includ-
ing significant new federal dollars for breast cancer research,
political lobbying, establishment of advocacy training, and fund-
ing of conferences to focus attention on breast cancer. Some of
these successes are summarized in Box97.1.7
PATIENT ADVOCACY AROUND THEGLOBE
The emergence of breast cancer advocacy at the international level
was demonstrated with the attendance of more than 250 delegates
from 44 countries and six continents at the First International
Conference on Breast Cancer Advocacy, funded by the National
Breast Cancer Coalition and held in Brussels in 1997. This con-
ference placed breast cancer advocates as equal partners with
health professionals, scientists, and policymakers in improving
and changing the current state of breast cancer care, 8 providing
a forum for identifying strategies to mobilize action worldwide.5,8
706 SectionXV professional education and building supportive care programs

Box 97.1 Reported Successes of the National Breast Cancer Coalition

NBCC Successes
More than $2.89 billion of new federal dollars for breast cancer research.
Created a nationwide, grassroots advocacy network. Today NBCCs membership includes more than 600 member organizations
and 60,000 individuals.
Brought about the development of an unprecedented multimillion-dollar breast cancer research project within the Department of
Defense (DOD) that has attracted more than 46,232 research proposals.
Through the Department of Defense program, worked vigorously to ensure consumer activist participation at the peer review
researchtable.
Breast Cancer Deadline 2020 is centered around strategic summits, catalytic workshops, and collaborative efforts with a multidis-
ciplinary and diverse group of stakeholders, collectively called the Artemis Project.
Awarded seed grants to allow scientist to begin the research required in key areas identified in the Artemis Project collaborative
efforts.
In response to NBCCs 2.6 million signature campaign in 1993, President Clinton met NBCCs demands and committed to a
National Action Plan on Breast Cancer, an innovative collaboration of government, science, private industry, and consumers.
Established an annual Advocacy Training Conference to train women and men from across the country to become informed,
active, and effective advocates of NBCCs legislative agenda. NBCCs annual Lobby Day following the Conference allows members
to use their newly acquired skills on Capitol Hill. In 2013, to strengthen the grassroots leadership across the country, NBCC con-
vened a unique summit of leaders for the Inaugural Advocate Leadership Summit.
Launched a breast cancer political campaign, including a 10-plank policy platform, voter registration drive, and a voterguide.
Initiated a Clinical Trials Project that educates NBCC members on the importance of clinical trials; increases the influence of breast
cancer survivors in trial design, access, and accrual; and advocates for public policies to encourage access to trials and mandate
insurance coverage of participation in qualified trials.
Created Project LEAD (Leadership, Education, and Advocacy Development), an acclaimed science-based program designed to
educate and train breast cancer activists to participate in the breast cancer research processes.
Through NBCCs World Conference, brought together breast cancer advocates from around the world to discuss strategies for
women to become involved in breast cancer decision-making within government, the scientific community, and industry.

National Breast Cancer Coalition, The Breast Cancer Deadline 2020. NBCC successes. http://www.breastcancerdeadline2020.org/about-nbcc/
nbcc-successes.html Accessed February 25,2014.

The hosting of the 17th Reach to Recovery International Breast
Cancer Support Conference in Cape Town, South Africa, in 2013,
was a reflection of the significant international momentum that
has developed since the initial 1997 conference.
In Australia, the first national advocacy organization was
officially launched in 1998, although a smaller state-based can-
cer advocacy organization has existed in one Australian state,
Victoria, since 1994.9 Similar to the history of advocacy in the
United States, Breast Cancer Network Australia (BCNA) was
founded by a group of breast cancer survivors who were pas-
sionately committed to making a difference for those women who
would follow. The group aims to empower women to become
active participants in their own healthcare and recovery, with a
strong belief that the experiences of women who have been diag-
nosed with breast cancer should be represented wherever deci-
sions about breast cancer treatment, care or services are made.10
With an online membership of over 10,000 (in 2013), BCNA calls
on women affected by breast cancer to become advocates at a
number of levels, including the following:
1. Joining BCNAs Review & Survey Group. Volunteers participate
in various research projects, including completing surveys,
reviewing resources, and participating in focus groups, clinical
trials, and other types of research.
2. Becoming Community Liaisons by speaking about their own
personal experience with breast cancer and representing BCNA
in their local communities. Activities include speaking at a
community fundraising event, being the face of a local media
story, staffing a BCNA information table, visiting sponsors or
liaising with local health professionals.
3. Becoming a Consumer Representative, as part of BCNAs inter-
nationally recognized Seat at the Table program. Consumer
representatives represent BCNA in a wide range of forums,
including national, state, and local committees, working par-
ties, and conferences, and provide critical reviews of resources
being developed for women with breast cancer.10
While breast cancer advocates undoubtedly led the consumer
advocacy movement internationally, there is now a growing trend
for other patients and consumers to also be actively involved in
decisions relating to their health. National bodies such as Cancer
Australia advocate for consumer engagement in all aspects of
cancer control to add a depth of knowledge that complements
 Chapter97
cancer control strategies with the reality and practicality of the
consumer experience.11 In 2000, Cancer Voices Australia (CVA)
was founded as the first independent national generic cancer con-
sumer movement in Australia. CVA is an alliance of cancer con-
sumer organizations, including a number of state-based Cancer
Voices groups.
The European Cancer Patient Coalition (ECPC) was estab-
lished in 2003 as the voice of the European cancer patient com-
munity, uniquely representing the interests of all cancer patient
groups from the most common to the rare forms of cancer.12
With its motto, Nothing about us without us! ECPC represents
341 members in 45 countries and is the largest patient advocacy
group in Europe. The ECPC was the key patient advocacy organi-
zation that came together with healthcare leaders (including two
former health ministers and a Nobel Laureate) and Members of
the European Parliament Against Cancer to launch the European
Cancer Patients Bill of Rights in the European Parliament in
Strasbourg, on World Cancer Day (February 4)2014. This Bill of
Rights, which represents a call to action to address the significant
disparities that exist for European cancer patients, includes three
patient-centered principles:
1. The right of every European citizen to receive the most accurate
information and to be proactively involved in his or hercare.
2. The right of every European citizen to optimal and timely
access to appropriate specialized care, underpinned by research
and innovation.
3. The right of every European citizen to receive care in health
systems that ensure improved outcomes, patient rehabilitation,
best quality of life, and affordable healthcare.13
TRAINING OF THE PATIENT ADVOCATE
The two main levels of advocacy are individual advocacy, which
focuses on the individual and assists families to resolve issues that
are relevant to them or their family, and system advocacy, which
focuses on influencing and changing the system so that people
with cancer as a whole will benefit. System advocacy includes
consumer representation on committees, working parties, and
advisory groups, policy and law reform activities, media releases,
publications, and cancer awareness training.14 Anumber of excel-
lent training programs have been developed and are offered by
consumer organizations around the world to support their con-
sumer constituents in their system advocacy. The NBCC Center
for Advocacy Training offers a wide range of advocate training
courses and online programs to cater to different levels of advo-
cacy, including the following:15
Annual Advocate Summit:NBCC has a national gathering of
breast cancer advocates from across the country and around
the world. Participants attend sessions on the latest scientific
research, training in effective advocacy strategies, and pre-
sentations by respected researchers in the field, grassroots
leaders from around the country and prominent public policy
experts.
Project LEAD Courses: Science and quality care training for
activists on the fundamentals of breast cancer science, research
design, and the critical thinking skills needed to participate in
the research and quality care decision-making process.
training and education of patient advocates 707
Team Leader Training (by invitation only):Political leadership
training course for activists working on legislative and public
policy issues.
OnlineCenter for Advocacy Training:Leading voices in breast
cancer research offer thought-provoking short online presenta-
tions on innovative ideas, study results from years of research,
and work on the Breast Cancer Deadline 2020 focus areas of
prevention and understanding of the causes and prevention of
metastasis.
In this chapter, two examples of training programs are pre-
sented in detail:the NBCCs Project LEAD, specifically targeting
breast cancer advocacy, and the Cancer Council NSW-Cancer
Voices NSW Cancer Consumer Advocacy Training (CAT) course,
which targets people directly affected by any type of cancer, their
primary caregivers, family members, or friends, and members of
the general community with an interest in cancer advocacy.
Project LEAD (Leadership, Education,
andDevelopment)
NBCC offers a variety of Project LEAD courses that prepare
advocates to engage and effectively influence breast cancer
decision-making in research, quality care, and community set-
tings, ranging from shorter introductory courses, open to all, to
longer intensive courses involving a competitive application pro-
cess. Box 97.2 summarizes these programs, as detailed by NBCC.16
Project LEAD is NBCCs premier science training program
for activists. Since it was first offered in 1995, the program has
attracted students with a personal connection to breast cancer, a
commitment to breast cancer activism, and an interest in learn-
ing scientific concepts.17 Importantly, the programs focusing on
cancer research are delivered by scientists from various disci-
plines across the United States, with participants gaining prac-
tical experience through the discussion and rating of research
proposals using the National Institutes of Health scale for prior-
ity scoring and debating of the research projects merits as if part
of a grant review panel. Through this intensive course, partici-
pants gain skills and confidence to speak up, ask questions, and
contribute to decisions about funding along with the scientists.
Project LEAD graduates are trained to engage in the following
activities:
Partnering with scientists to design breast cancer research;
Becoming involved with clinical trials on protocol committees,
Data and Safety Monitoring Boards, helping educate the public
about participating in trials;
Writing articles and commentary on breast cancer issues;
Presenting work at scientific conferences and meetings;
Reviewing breast cancer research proposals for the Department
of Defense Breast Cancer Research Program and other research
panels;
Servingon decision-making boards of local, state, and national
organizations, committees, and institutional review boards.
Cancer Consumer Research TrainingCourse
Cancer Voices NSW, founded in New South Wales, Australia, in
2000, worked in partnership with the state-based cancer charity,
the Cancer Council NSW, to develop and implement a model for
708 SectionXV professional education and building supportive care programs
Box 97.2 Project LEAD Courses Offered by theNBCC
Project LEAD Institute
Offered annually in July, this intensive six-day course teaches
advocates the language and concepts of science with a focus on
the biology of breast cancer, genetics, epidemiology, research
design, and advocacy.
Project LEAD Workshop
The Project LEAD workshop is a two-day training program for
advocates interested in an introductory education in the science
of breast cancer, research design, advocacy, and understanding
medical news in themedia.
Quality Care ProjectLEAD
This four-day course teaches breast cancer advocates the prin-
ciples of health services research and how to measure and
improve the quality of healthcare through systems change.
Clinical Trials ProjectLEAD
This four-day advanced course for Project LEAD Institute grad-
uates focuses on the structure of clinical trials, the ethics and
regulatory aspects, and methods for improving the design and
outcomes of breast cancer clinical trials research.
International ProjectLEAD
International Project LEAD is open to non-North American
advocates and covers the basics of cancer biology, genetics, epi-
demiology, research design, and advocacy, with an emphasis on
global clinical trials.
Continuing Education for LEADGrads
NBCC offers a variety of online training opportunities, webi-
nars, and advanced topics at conferences, open to LEAD gradu-
ates, to continue their advocate education.
consumer and community participation in the review and selection
of health and medical research.18 This initiative was initially driven
by the Cancer Council NSWs commitment to form a Consumer
Panel, whose trained members would review, apply specific crite-
ria, and give a ranking to research grant applications submitted for
funding to the Cancer Council NSW. This consumer review process
complemented the Cancer Councils long-standing scientific review
process. This comprehensive initiative included the following:
Anassessment of the barriers, challenges, and facilitators of the
involvement of consumers in review of research.19
Funding a qualitative research project which identified that
the values deemed by cancer consumers and community
members to be important in judging research were extent of
benefit afforded by the research, timeframe of and pathway
for realizing the benefit, potential for application of benefit,
equity and consumer involvement (including in the dissemi-
nation of results). These values informed the development of
research review criteria, a rating scale to facilitate consumer
assessment to be incorporated into the judging of health and
medical research grants, and guidelines to assist researchers to
summarize their research in a consumer-friendly manner for a
Consumer Panel. 20
Developing a two-day Consumer Research Training course, for
consumers who are interested in influencing the direction of
cancer research. This training was developed in a partnership
between consumers and researchers,21 is offered annually, and
is a prerequisite for being listed on the Consumer Involvement
in Research Register, for opportunities to influence research
projects and priorities. The course covers information including
the following:
Structures and processes for funding of cancer research in
Australia and NSW, including the definition and scope of
health and medical research.
Overview of the research disciplines, including basic, epi-
demiological, clinical, behavioral and psychosocial, cancer
screening, and health services research.
Overview of the role of the Consumer Panel and the various
positions on this panel, and review of the operating guide-
lines and protocols for thispanel.
Practical skills development, through practicing review of a
research funding submission, application of the Consumer
Review Criteria, discussion of individual ratings and group
decision on the final ranking of the reviewed grants.
Since its initial development in the mid-late 2000s, the
Consumer Research Training course has been adapted and imple-
mented across a number of cancer research funding organizations
across Australia, providing consumers with a seat at the table
where research funding decisions are made to ensure that con-
sumer priorities are considered.
IMPACT OF TRAINING ON ADVOCATES
PARTICIPATION ANDIMPACT
In Australia, Davis et al. 22 evaluated the effectiveness of a
three-day advocacy training program specifically designed for
breast cancer consumers. Participants completing a pre- and
post-questionnaire (n=51, 77% response rate) reported signifi-
cantly increased involvement following the training in serving
as a member of a board or committee, working on clinical trials
recruitment issues, and working on patient resources, and a sig-
nificant increase in feeling qualified to do breast cancer advocacy
work. However, participants did not report any increased involve-
ment in breast cancer support groups, community cancer centers
or local hospitals, educational organizations, government depart-
ments, information/counseling services, or private physician and
healthcare providers. The authors noted that the areas where
improvement was reported may in fact have been the easiest and
most accessible for consumers, given the relatively recent intro-
duction of the advocacy movement in Australia at the time this
evaluation was undertaken. The relatively open invitation to the
training program also attracted a majority of participants with
very little experience in consumer advocacy, which may also have
limited the likelihood of observing significant changes in advo-
cacy activity following a three-day training program.
In 2007, Hubbard etal.23 published a review of 131 documents
that explored the involvement of people affected by cancer in
research, policy, and planning and practice, in countries including
 Chapter97
the United States, the United Kingdom, Canada, and Australia.
Hubbard et al.23 reported that people affected by cancer were
involved in research as advocates, strategists, advisors, reviewers,
and as participatory researchers. Very few publications reported
on the impact of this involvement, with reviewers suggesting that
it is likely to make research more relevant to people affected by
cancer, to increase peoples knowledge and understanding, and
to personally empower them, but that it was unlikely to alter
which research projects get approved. At the policy level, involve-
ment tended to be either in long-term strategic partnerships, or
in one-off activities, for example to improve or accredit services,
develop care pathways, or contribute to the development of guide-
lines. The only document that examined the effect of this type of
involvement in an objective manner reported that involvement in
medical education was associated with increased ability by stu-
dents to elicit psychosocial information and to relate more effec-
tively and empathically to patients with cancer.24
Though some research has been undertaken on the impact of
training on change in advocacy activity, the impact on outcomes
has been less studied. Developing a strong evidence base around
advocacy activities and their impact is important to support the
sustainability of training programs over time. Brief guidelines for
evaluating consumer involvement at the level of process, impact,
and outcomes are available from some organizations, including
the Australian governments lead cancer organization, Cancer
Australia.25 Akey message from the small number of evaluations
is that training programs may be more effective if they are tailored
to the experience levels of participants, targeting beginners versus
more experienced patient advocates separately. Furthermore, it is
clear that organizations having time, resources, and supporting
policies, principles, and attitudes are critical enablers to meaningful
consumer involvement in health and medical research and policies.
REFERENCES
1. Oxford Dictionaries. Definition of advocacy in English. http://www.
oxforddictionaries.com/definition/english/advocacy?q=advocacy.
Accessed February 25,2014.
2. American Nurses Association. Nursings Social Policy Statement, 2nd
ed. Silver Spring, MD:Nursesbooks.org;2003.
3. Reach to Recovery International. http://www.reachtorecoveryinter-
national.org/ Accessed February 27,2014.
4. National Coalition for Cancer Survivorship. https://www.cancerad-
vocacy.org/. Accessed March 4,2014.
5. Datloff EH. The international politics of breast cancer:the power
of advocacy. Helix. 1997;3:4247. Cited in Davis C, Redmond S.
Evaluating the effectiveness of advocacy training for breast cancer
advocates in Australia. Eur J Cancer Care. 2001;10:8286.
6. Muha L. The redefinition of patient advocacy:pillars of strength.
Odyssey. 1997;3:27. Cited in Davis C, Redmond S. Evaluating the
effectiveness of advocacy training for breast cancer advocates in
Australia. Eur J Cancer Care. 2001;10:8286.
7. National Breast Cancer Coalition, The Breast Cancer Deadline
2020. NBCC successes. http://www.breastcancerdeadline2020.org/
about-nbcc/nbcc-successes.html Accessed February 25,2014.
training and education of patient advocates 709
8. Liberati A. Consumer participation in research and health care: mak-
ing it a reality. Brit Med J. 1997;315:499.
9. James J. Giving life to a field of women. Beacon. 1999;5(1). Cited
in Davis C, Redmond S. Evaluating the effectiveness of advocacy
training for breast cancer advocates in Australia. Eur J Cancer Care.
2001;10:8286.
10. Breast Cancer Network Australia. Speak Out. http://www.bcna.org.
au/speak-out. Accessed February 25,2014.
11. Cancer Australia and Cancer Voices Australia. National
Framework for Consumer Involvement in Cancer Control. 2011;
Cancer Australia, Canberra, ACT. http://canceraustralia.gov.au/
sites/default/files/publications/national_consumer_framework_
web_504af020f2184.pdf. Accessed February 24,2014.
12. European Cancer Patient Coalition. Home page. http://www.ecpc.
org/. Accessed February 25,2014.
13. European Cancer Patient Coalition. Photos and declarations, Launch
of European Cancer Patients Bill of Rights. http://www.ecpc.
org/?p=2231. Accessed February 25,2014.
14. Cancer Voices South Australia. Two types of advocacy. http://www.
cancervoicessa.org.au/advocacy/twotypesofadvocacy. Accessed
March 4,2014.
15. National Breast Cancer Coalition, The Breast Cancer Deadline 2020.
Advocacy training. http://www.breastcancerdeadline2020.org/
get-involved/training/. Accessed March 4,2014.
16. National Breast Cancer Coalition, The Breast Cancer Deadline
2020. Project Lead. http://www.breastcancerdeadline2020.org/
get-involved/training/project-lead/. Accessed March 4,2014.
17. Platner JH, Bennett M, Millikan R, Barker MDG. The partner-
ship between breast cancer advocates and scientists. Environ Mol
Mutagens. 2002;39:102107.
18. Saunders C, Crossing S, Girgis A, Butow P, Penman A.
Operationalising a model framework for consumer and community
participation in health and medical research. Aust NZ J Health Policy.
2007;4:13.
19. Saunders C, Girgis A. Status, challenges and facilitators of consumer
involvement in Australian health and medical research. Health Res
Policy Syst. 2010;8:34.
20. Saunders C, Girgis A, Butow P, Crossing S, Penman A. Beyond sci-
entific rigour:funding cancer research of public value. Health Policy.
2007;84(2-3):234242.
21. Saunders C, Girgis A, Butow P, Crossing S, Penman A. From inclu-
sion to independence: training consumers to review research. Health
Res Policy Syst. 2008;6:3.
22. Davis C, Redmond S. Evaluating the effectiveness of advocacy train-
ing for breast cancer advocates in Australia. Eur J Cancer Care.
2001;10:8286.
23. Hubbard G, Kidd L, Donaghy E, McDonald C, Kearney N. A review
of literature about involving people affected by cancer in research,
policy and planning and practice. Patient Educ Couns. 2007;65:2133.
24. Klein S, Tracy D, Kitchener HC, Walker LG. The effects of the par-
ticipation of patients with cancer in teaching communication skills
to medical undergraduates:a randomised study with followup after
2years. Eur J Cancer. 1999;36:273281.
25. Australian Government. Cancer Australia. Consumer training for
the Priority-drive Collaborative Cancer Research Scheme. http://
consumerinvolvement.canceraustralia.gov.au/sites/default/files/
doc-lib/ accessible/researchers/r5.3-19_case_study_example
consumerinvolvementcanceraustraliapdccrs.pdf. Accessed March
4,2014.
 CHAPTER98
The Engaged Patient
The Cancer Support Communitys
Integrative Model of Evidence-Based
Psychosocial Programs,
Services, and Research
Mitch Golant, Joanne Buzaglo, and Kim Thiboldeaux
Globally, more than 11 million people are diagnosed with can-
cer annually, and it is estimated that by 2020, 15 million new
cases will be diagnosed annually. Cancer causes 7million deaths
annuallyor 12.5% of deaths worldwide1. However, over the last
20years, cancer is no longer viewed as a death sentence. Of course,
people are still dying of cancer, but increasingly it is being treated
as a chronic illness. Consider this hopeful statistic: there are
nearly 14million cancer survivors in the United States compared
to 5.8million in 1982.1 Due to earlier detection and better treat-
ments, many people live with this disease for years. Most will go
through treatment, some may experience recurrence, and others
may undergo a second course of treatment or even athird.
As we move forward, we find ourselves in an era in which two
significant shifts are happening in the healthcare delivery sys-
tem in the United States, and, more specifically, in the patient
experience in areas like oncology. The primary forces for change
are (1)the unsustainable cost of healthcare in the United States,
estimated at $2.9 trillion annually, four-fifths of which is spent
on 20% of the population (mostly people with complex medical
problems and chronic diseases like diabetes, heart failure, and
cancer);2 and (2)the rise of the engaged patient and the focus on
a more patient-centered system ofcare.3
PATIENT-CENTERED CARE:THE
BLOCKBUSTER DRUG OF THE
TWENTY-FIRST CENTURY
Patient-centered care differs from the traditional medical model,
as shown in Figure 98.1. Consistently, patient-centered care leads
to increased engagement, which in turn leads to better experi-
ences and outcomes.3 These improvements outstrip even the most
successful drug outcomes, leading experts to call patient-centered
care the blockbuster drug of the century.4 Emerging evidence
indicates that patient-centered care also reduces costs.5 For cancer
patients, there is considerable evidence of the benefits of social
and emotional support on health outcomes.6
The Institute of Medicine (IOM) has released reports that address
various aspects of comprehensive, integrated cancer care, includ-
ing From Cancer Patient to Cancer Survivor: Lost in Transition7
(2005); Cancer Care for Whole Patient:Meeting Psychosocial Health
Needs8 (2008); and Delivering High-Quality Cancer Care:Charting
a New Course for a System in Crisis9 (2013). These reports uniformly
involve patient-centered themes and recommendations, including
advocating for distress screening, palliative care, survivor care
planning, and enhanced patientphysician communication. The
reports also address the need to better integrate the medical estab-
lishment with community resources to provide a comprehensive
model of care. For example, the 2013 report states, The commit-
tee recommends that HHS [Department of Health and Human
Services] develop a national strategy that leverages existing com-
munity interventions to provide accessible and affordable cancer
care. To accomplish this, HHS should support the development
of innovative programs, identify and disseminate effective com-
munity interventions, and provide ongoing support to successful
community interventions.9
The Cancer Support Communitys Mission
The Cancer Support Communitys (CSC) mission is to ensure that all
people impacted by cancer are empowered by knowledge, strength-
ened by action, and sustained by community. In 2009, The Wellness
Community and Gildas Club merged to become the Cancer Support
Community. The combined organization, with more than 50years
of collective experience, provides professional social and emotional
support for people impacted by cancer through a network of 55
licensed affiliates, over 100 satellite locations, and a vibrant online
community, touching more than one million people annually.
Backed by evidence that the best cancer care includes social
and emotional support, the CSC offers all services free to people
 Chapter98 the engaged patient 711

Medical Model Patient-Centered Model

Patients role is passive Patients role is active

(patient is quiet) (Patient asks questions)

Patient is the recipient of Patient is a partner in the treatment plan

treatment (Patient asks about options)

Physician dominates the conversation Physician collaborates with the patient

(Does not offer options) (Offers options; discusses pros & cons)

Care is disease-centered Care is quality-of-life centered

(Disease is the focus of daily activities) (The patient focuses on family & other activities)

Physician does most of the taking Physician listens more & talks less

Patient may or may not adhere to Patient is more likely to adhere to treatment plan
treatment plan (Treatment accomodates patientss cultures & values)

Figure98.1 Patient-centered care.Reprinted with permission from Sacristan JA, Patient-centered medicine and patient-oriented research:improving health outcomes
for individual patients. BioMed Central. Published online. 2013 Jan 8.doi:10.1186/1472-6947-13-6.

with any type or stage of cancer and to their loved ones. Since
its inception in 1982 (as The Wellness Community), the CSC has
been at the forefront of putting the patient experience at the center
of all cancer care. It drives all aspects of our work. Moreover, there
is growing interest in the benefits of psychosocial support and
acceptance by the medical community to shift its focus from the
actions of medical professionals to the behaviors of individuals.
Through decades of working with cancer patients, their families,
and caregivers, CSC has developed a portfolio of evidence-based
programs that address each patients most pressing concerns.
Anyone on the cancer journey can visit our facilities, which pro-
vide support groups, educational programs, exercise and nutri-
tion classes, childrens support programs, and social activities.
These are replicated on our Helpline and online services. With
342 licensed professionals across the network, CSC is the larg-
est nonprofit employer of psychosocial oncology mental health
professionals in the United States, with decades of experience in
delivering evidence-based psychosocial support.
THE HISTORICAL ROOTS OF CSCS PATIENT
EMPOWERMENTMODEL
CSCs Patient Empowerment model has its roots in the Patient
Active Concept (PAC) developed by founder Dr. Harold
Benjamin. The PAC grew out of the understanding that the three
most significant psychosocial stressors a cancer patient faces are
unwanted aloneness, loss of control, and loss of hope. The concept
states:People with cancer who participate in their fight for recov-
ery along with their healthcare team will improve their quality of
life and may enhance the possibility of their recovery. This concept
combines the will of the patient with the skill of the physician, and
it has a particularly positive effect on outcomes.10
The PAC is at the core of CSCs early research and today defines
CSCs Patient Empowerment Model (Figure 98.2). It was validated
by a 1998 randomized clinical trial in collaboration with Stanford
University and the University of California at San Francisco.11
In that study, we learned that women with breast cancer who

Improved Health &

Well-being for People
Affected by Cancer

Improve Improve Ability

Make Important Develop a New
Partnership with to Access
Lifestyle Attitude toward
Health Care Information &
Changes Cancer
Team Resources

Increase Increase
Increase
Sense of Hope &
Social Ties
Control Meaning

Cancer Support CommunityTM

Program

Figure98.2 CSCs patient empowermentmodel.

712 SectionXV professional education and building supportive care programs
participated in CSCs support groups, as compared to those in
supportive-expressive therapy (the Stanford model), show signifi-
cant reductions in post-traumatic stress, significant increases in
making important life changes, an increasingly positive attitude
toward their illness, better access to cancer-related information/
resources, and better communication with their physicians.
Advocacy groups across the globe have used CSCs landmark
programssupport groups, educational and survivorship pro-
grams, and online communityas a guide for delivering support.
CSCs Three Pillars
CSCs Patient Empowerment Model is a road map for patient
engagement. Learning from Leslie Crutchfields model of a trans-
formative nonprofit organization, CSC has strategically aligned
itself with the three pillars of patient engagement: (1) direct
service delivery (programs described below), (2) research, and
(3) policy.12 We learn about the patient experience from direct
services and research, all of which inform CSCs policy initiatives.
To transform healthcare policy, we access the patient experience
through CSCs grassroots network. This chapter highlights four
patient-centered research projects designed to better understand
and treat the engaged patient.
CSCS EDUCATION AND SUPPORT
PROGRAMS
In 2013, CSC delivered more than $42million in free services to
patients and families. The following is a summary of the programs
that evince the Patient EmpowermentModel.
Psycho-educational Programs
The CSCs national patient education program Frankly Speaking
About Cancer (FSAC) includes comprehensive booklets, a
community-based workshop series, and online information that pro-
vide the most current clinical and psychosocial information. Frankly
Speaking About Cancer booklets may be requested online at www.
cancersupportcommunity.org and are also available as a PDF down-
load. In 2012, CSC distributed 68,094 booklets in print and online.
In 2012, CSC conducted 232 FSAC workshops across the coun-
try. These community events offer attendees an opportunity to
connect with medical professionals outside the oncology practice
in a relaxed environment. Program evaluation data indicates that
after attending a workshop
Over95% of FSAC workshop participants reported an increase
in knowledge.
Over 80% of FSAC workshop participants felt better equipped
to communicate with their healthcareteam.
Over 97% of FSAC workshop participants would recommend
the program to others.
Patient-friendly books, videos, webinars, workshops and a radio
show about various cancers, cancer care costs, clinical trials, and
living healthfully can be ordered or downloaded from the CSCs
website.
Patient Active SupportGroups
Licensed mental health professionals provide ongoing, weekly
cancer support groups for people with mixed diagnoses at all
CSC affiliates. In 2013 CSC conducted over 101,000 such sessions.
Participants stay in these groups between 12 and 18months. CSC
also offers diagnosis-specific groups for people with brain, breast,
prostate, lung, and other cancers. CSC includes the entire fam-
ily, so weekly two-hour family/caregiver and bereavement groups
provide support to these populations.
Online SupportGroups
For people who prefer getting support online or who are unable to
join a face-to-face group, CSC hosts The Living Room, a full suite
of online professionally facilitated support groups and discussion
boards. To date, more than 10,500 people have joined this virtual
community. In 2012, there were more than 34,000 visits made to
The Living Room. Some of the services include the following:
Online Support Groups:Groups meet weekly in a text-based chat
room for 90 minutes, led by mental health professionals trained
to manage online communication. Topics include living with
cancer, caregiving, and bereavement.
Discussion Boards:These are an outlet for people to share advice
and support and are available for group members to continue
their interactions after the support group session.
Your Own Personal Website:Patients can create a personal web-
site to share their cancer experience with friends and family.
Members post photos and videos and share calendars.
Support for Teens:Group Loop:Designed for adolescents, Group
Loop is a secure site where teens with cancer can connect to
share experiences, find support, and regain control over their
lives. In 2012, more than 3,200 unique visitors took advantage
of GroupLoop.
Communication with MedicalTeam
CSC developed the evidence-based Open to Options program,
which helps patients clarify their thoughts and identify individual
needs so they can effectively communicate concerns with their
medical teams when selecting among cancer treatment options.
This program is discussed in greater detailbelow.
Distress Screening
CSC has developed the evidence-based Cancer Support Sourcea
25-question survey in English and Spanish that helps cancer
patients (and their families) identify stress points. These stress-
ors prompt referrals for assistance, such as help with depression,
financial services, body image problems, and so on. It is discussed
in greater detailbelow.
Cancer Transitions
CSC, in collaboration with LiveSTRONG, developed an
evidence-based six-week program aimed at educating, empower-
ing, and supporting people who have recently completed cancer
treatment. The program covers the benefits of exercise, nutrition,
emotional support, and medical managementcore issues for
cancer survivors.
Quality Assurance Program and ADAPTSystem
CSC is committed to quality assurance. Every affiliate adheres to rig-
orous standards that ensure high quality and consistent program-
ming, ethical and effective fundraising, and efficient operations.

Through weekly clinical supervision at each local affiliate and online
community, as well as in-service training through CSCs annual
Affiliate Leadership conference, CSC has created a community of
professionals with a culture of consistent quality improvement.
In 2012, CSC developed the Affiliate Data and Performance
Tracking quality assurance system (ADAPT), a simple method
of communicating CSC affiliate data to Headquarters. ADAPT
provides affiliates with access to real-time aggregate statistics and
establishes uniform, system-wide definition of data fields. ADAPT
helps CSC identify unmet needs, and reapportion resources to
develop and/or implement programs systematically. ADAPT is
designed to help the CSC network
Improve our collective ability to describe the reach and impact
to people affected by cancer;
Better understand the people weserve;
Unify and streamline the data-reporting process;
Identify network-wide quality standards, averages, and best
practices;
More quickly recognize affiliates in financial distress.
CSCs RESEARCH AND TRAINING
INSTITUTE
Dr.Lee Jong-Wook, former director-general of the World Health
Organization (WHO), laments the gap between todays scientific
advances and their applicationbetween what we know and what
is actually being done.13 The role of CSCs Research and Training
Institute is to step into this gap and translate evidence-based
research into practice. Although founded as a service delivery
organization, CSC in 1996 implemented into its strategic plan a
commitment to evidence-based practice and research. In 2008,
CSC established the Research and Training Institute (RTI)
to examine the critical role of social and emotional support by
designing studies that help people impacted by cancer, giv-
ing them the opportunity to share their collective experience to
inform next steps in research, programs, and policy.
Research Collaborations:The Community-Initiated
Research CollaborationModel
CSC integrates research into the programs and services it con-
ducts in collaboration with academic or hospital partners, and
it applies others psychosocial research. CSCs research model is
called Community Initiated Research Collaborations (CIRC), and
refers to research collaborations between community-based non-
profits and medical or academic centers.1 There are several ele-
ments to this collaborativemodel:
1. Power is equal:Research questions and project aims are guided
by the needs of the community as well as those of the academic
or scientific partner.
2. CIRC is a win-win for researchers and community partners:
Benefits for the Researcher:Academic scholars participate in inno-
vative research and bring scientific clarity to critical issues.
Benefits for the Community: The research partnership creates
an opportunity to rigorously test a communitys innovative
ideas and programs in a structured and focused manner.
Chapter98 the engaged patient 713
Because research occurs in the communityin a transla-
tional settingpositive findings can be quickly disseminated.
3. Mediation integrated into the model: Effective collaborations
include effective conflict resolution. The goal is to further sci-
ence, not just evaluate programs.
4. Results are disseminated through professional and public forums.
All presentations are shared jointlyand where applicable, the
community partner may be first author and present findings at
professional meetings.
At the heart of the CIRC model is an assessment strategy that
uses the RE-AIM framework (Reach, Effectiveness, Adoption,
Implementation, and Maintenance) for evaluating program
implementation (see www.re-aim.org). RE-AIM monitors pro-
grams using quantitative and qualitative approaches.
In the following section, we highlight four CIRC research proj-
ects that have been widely disseminated.
CURRENT CSC PATIENT-CENTERED
RESEARCH PROGRAMS
The Cancer Experience Registry
Launched in 2013, the Cancer Experience Registry is designed to
(1)track patients experience from diagnosis throughout the care
continuum; (2)share data with participants in real time and link
them to valuable resources; and (3) disseminate findings to the
cancer community at large in order to inform future research, and
programmatic and policy initiatives.
The Cancer Experience Registry grew out of the CSCs recog-
nition of the urgent need to identify and quantify the social and
emotional gaps in care delivery, and develop effective, innovative
research and programs to improve long-term quality oflife.
It is based on the Breast Cancer M.A.P. Project, a proof of con-
cept developed and implemented in 2010, which looked at the
emotional and social needs of individuals with breast cancer and
tracked how these change throughout the cancer journey. The
Cancer Experience Registry is open to all cancer patients. Its online
platform enables the creation of integrated sub-registries targeted to
individuals with specific diagnoses. These sub-registries allows for
(1)aggregation of data, (2)analyses highlighting differences among
people coping with various diagnoses, and (3)the ability to tailor
questions to a given subgroup. The overarching goal of the Cancer
Experience Registry is to create a learning system that improves
healthcare delivery systems and transforms the patient experience.
To date, over 6,400 people, representing more than 35 differ-
ent cancer types, have registered:850 with metastatic breast can-
cer, 334 with breast cancer (plus 3,800 from the original Breast
Cancer Survivor Registry), 400 with multiple myeloma, and 400
with chronic myeloid leukemia. (Other diagnoses include lung,
colorectal, ovarian, and prostate cancer, and lymphoma.)
The Registry has begun to illuminate critical gaps in care:14
1. Over half of registrants wish they had received more help deal-
ing with emotions related to cancer.
2. Nearly half would have liked to receive more support, prior to
making treatment decisions.
3. Half reported that a member of their healthcare team asked
about cancer- related distress.
714 SectionXV professional education and building supportive care programs
Findings provide insight into the growing need to offer more
support and education to patients with advanced disease, espe-
cially as emerging treatments transform cancer into a chronic
disease. Women living with metastatic breast cancer indicated
that they experience gaps in communication with their healthcare
providers, especially about the long-term side effects of treatment.
Over half wished they had received more help managing these and
the emotions related to their cancer.15 Findings from the Registry
are widely disseminated among advocacy and research groups, as
well as the Registry participants.
Our next step is to engage caregivers. Cancer impacts three out
of four families.16 The Cancer Experience Registry for Caregivers
will be an ongoing venue for them to share their voices and receive
vital information related to their concerns.
CancerSupportSourceDistress:Distress Screening
inthe Community
Research has demonstrated that cost and health consequences
are associated with the failure to adequately screen for and treat
depression and distress. Depression has been linked to signifi-
cantly higher annual healthcare utilization costs.17 Distressed
patients who receive psychotherapeutic interventions experience
a decrease in hospitalization frequency and length of stay, num-
ber of physician office and emergency room visits, and number of
prescriptions.18
The Institute of Medicine, the National Comprehensive Cancer
Network, and the Commission on Cancer of the American
College of Surgeons recognize that screening, referral, and
follow-up for psychosocial concerns are critical to ensuring qual-
ity cancer care for the whole patient.19 Yet, it is often difficult for
patients and families to receive the supportive services they need
in community care facilities where nearly 85% of patients are
treated.20,21 To address this gap, the CSC developed and validated
CancerSupportSourceDistress, a distress screening program that
facilitates the integration of psychosocial services between the
community and the healthcare delivery system (hospitals, cancer
centers, and oncology practices).
CancerSupportSourceDistress is an evidence-based, psychoso-
cial screening program that provides web-based screening, refer-
ral, and follow-up care. Patients complete a survey in which they
rate 25 concerns and indicate the type of help (print information,
online resources, or talk with a staff member) they want. Next, a
report is generated based on these responses. Patients receive tai-
lored, automated referrals to support resources and follow-upcare.
The 25-item distress screening tool (CSS-25) was designed to
target seven key areas of psychosocial need identified by the IOM:8
(1)getting cancer-related information; (2)coping with emotions;
(3)managing illness and treatment; (4)changing lifestyle behav-
iors; (5) managing life disruptions; (6) material/logistical con-
cerns; and, (7)financial concerns. To validate the tool, CSC tested
the psychometric properties of CSS-25 across 10 affiliate sites and
examined its ability to identify those at risk for depression.19
CSS-25 exhibits high internal consistency and strong to mod-
erate test-retest reliability. When compared to gold standard
measures related to quality of life, CSSs total distress score cor-
relates strongly with the FACT-G (R 2=0.49, p < 0.001), CES-D
(R 2=0.46, p < 0.001) and the Distress Thermometer (R 2=0.37,
p < 0.001), indicating moderate to strong concurrent validity, and
is able to discriminate groups of clinical relevance, in particular
those at high risk for depression.19 Items with the greatest power
to predict overall distress are (1)changes or disruptions in work,
school, or home life; (2)feeling sad or depressed; (3)feeling too
tired to do what you need or want to do; (4)worrying about the
future; and (5)feeling nervous or afraid.22 Additionally, CSS-25
has been translated and validated with concerns about pain as the
item with the greatest discrimination among a Spanish-speaking
sample. These differences suggest that future efforts in imple-
menting distress-screening programs need to focus on cultural
sensitivity to meet the psychosocial needs of diverse communities.
The Impact of Distress Screening on Patient-Reported
Outcomes
Outside Canada, little research has examined the impact of
screening, referral, and follow-up on patient-reported outcomes.23
To address this gap, CSC developed a pilot project exploring the
effectiveness of CSS-25 in two affiliate sites with strong part-
nerships with community cancer centers. 24 Patients were asked
to complete CSS-25 at an initial session and were rescreened at
3045days. There was a significant decrease in overall total dis-
tress scores and in the number of items that were rated at mod-
erate to highly severe levels. Specifically, 26 cancer patients (96%
female, 81% white, 35% income < $40K) completed the baseline
and rescreen survey. Feeling nervous or afraid was a top concern
at baseline (48%), but the proportion that endorsed it as a top con-
cern significantly decreased between baseline and rescreen from
48% to 17% (p=0.016). There was a significant decrease in the sum
of the 25 problem ratings (mean SE) from 50.6 2.9 to 45.6
2.9 (p=0.01) and in the summary count of items rated moder-
ate or very serious concerns from 7.3 1.0 to 5.5 1.0 (p=0.03).
These findings, as a proof of concept, suggest that distress screen-
ing within a community setting can lead to appropriate level of
intervention and better outcomes.
Future work will focus on implementation science and the
impact of distress screening, referral, and follow-up on qual-
ity related outcomes, including cost-effectiveness, clinical and
patient-reported outcomes (patient satisfaction), and value.
Training clinical care staff about implementing screening and
referrals will become an increasingly essential component of inte-
grating psychosocialcare.
Open to Options
As cancer treatment becomes increasingly complex, patients
report feeling anxious about questions to ask or how to effec-
tively use information to ensure optimal treatment. Nearly half
of Registry respondents wanted more support prior to making
treatment decisions. Patients are often unaware that some deci-
sions made early in the disease could impact the feasibility of later
options. It is essential that they are well prepared for these discus-
sions with their physician. However, despite efforts to promote a
culture of patient-centered care, patients are not fully empowered
in treatment decision-making.
To address this gap, CSC has developed and evaluated Open to
Options, a patient-centered, evidence-based program designed
to improve doctorpatient communication regarding treatment
decisions. Open to Options is a question-listing intervention that
begins with a non-directive interviewing process. Prior to a doc-
tor visit, a trained facilitator elicits patient questions without pro-
viding information or advice and produces a written question list

organized according to Open to Options topics, including (1)diag-
nosis, (2)treatment options, (3)goals and objectives. The facilita-
tor then prints out the Open to Options question list and gives
copies to the patient to distribute to healthcare professionals. This
document becomes a patient-driven agenda and helps empower
the patient to participate fully in the treatment discussion.
Our findings strongly suggest that Open to Options is a pow-
erful tool that increases engagement in doctorpatient dialogue
around treatment decisions, and clinical trials in particular.
Replicating a pilot study funded by the Centers for Disease
Control focusing on patients with hematological cancers, CSC
evaluated Open to Options among patients with all types of
cancer. Findings indicate that this intervention leads to a signifi-
cant reduction in distress and anxiety and a significant increase
in confidence in knowing what questions to ask. Further, this
question-listing process does not systematically lengthen the
patient/physician consultation, and all parties reported that the
questions led to more productive consultation and communica-
tion regarding treatment options.25
Individuals participating in Open to Options discuss and enroll
in cancer clinical trials at rates far above the national average. Our
data shows that 39%49% of study participants report discussing
clinical trials with their healthcare team, and 9%12% report par-
ticipating in clinical trials as part of their treatment plan, as com-
pared to the 3%5% national average enrollmentrate.
Update the Online Support:Newmodel
As the incidence of cancer survivors grows exponentially over the
next decades, the cancer care community will be challenged with
meeting the psychosocial needs of multitudinous cancer survi-
vors. Researchers need to develop effective, scalable, economical
interventions that can address these unmet needs. Online sup-
port groups have great potential for providing high-volume and
low-cost access to care. They also allow individuals to safely
express themselves and receive support no matter where theylive.
Little research had existed with respect to their effective-
ness prior to 1996, when CSC (then The Wellness Community)
embarked on a landmark study in partnership with Stanford
University and the University of California at San Francisco,
entitled The Effectiveness of Internet Support Groups for Women
with Breast Carcinoma:APilot Study of Effectiveness. Our find-
ings, published in 2003, showed that women with breast cancer
in professionally facilitated online support groups experienced
significant increases in post-traumatic growth in three areas:see-
ing new possibilities, zest for life, and spirituality. These women
also experienced significant decreases in depression. This study
suggested that even support received in a nontraditional setting
such as online support groups was associated with reductions in
depression and also the ability to see the silver lining in the trau-
matic experience.26
Moreover, with the likelihood of huge increases in cancer sur-
vivors, there is an increasing interest in identifying and treat-
ing patients with high risk of distress (depression and anxiety).
To address this concern, CSC, in collaboration with Temple
University, has conducted a randomized controlled trial to
explore the impact of time-limited (6-weeks), professionally led,
psycho-educational models of online support for women with
breast cancer (N = 183; stages 12) at high risk for depression
and anxiety.27 Results demonstrated significant reductions in the
Chapter98 the engaged patient 715
proportion of women with anxiety and depression at the initial
follow-up assessment after participating in the six-week program.
Overall, there were large declines in the proportion of women
with possible anxiety from pre- to post-intervention (70.5%
pre-intervention to 48.7% post-intervention) and modest
declines in possible depression (31.7% pre-intervention to 25.2%
post-intervention).28 These findings suggest that online support
can be a feasible, cost-effective means of reaching and meeting the
psychosocial needs of those at high risk for distress.
CONCLUSION
As we move into the twenty-first century, patient engagement
becomes ever more essential to developing innovative strategies
that shape the way in which comprehensive, integrated medical
care is delivered to cancer patients and their families. The extent
to which we are able integrate care across healthcare systems,
by leveraging new technologies, principles from behavioral and
implementation science, and services from community-based
organizations, will determine the opportunities for innovative
solutions in meeting the needs of cancer patients. To truly engage
patients, we need to engage them at each step of the research pro-
cess. At CSC, we are exploring collaborations across multiple
stakeholders in order to create a patient-powered research net-
work, in which patients and their family members can help drive
and shape the future of cancer care. Findings from CSCs Research
and Training Institute are meant to inform next steps in quality
and cost-effective care and to help shape policy so that all people
impacted by cancer are empowered by knowledge, strengthened
by action, and sustained by community.
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 CHAPTER99
Collaborative Psychosocial
Oncology CareModels
Jesse R.Fann and JenniferSexton
INTRODUCTION
Cancer care has become more complex with the advent of new,
personalized treatment regimens and complex healthcare systems.
Parallel to this growing complexity of care is the emergence of
quality standards and guidelines that mandate universal screen-
ing and provision of comprehensive psychosocial care that is inte-
grated into the routine care of cancer patients. This convergence
of health system complexity and clinical demands requires the
development of integrated systems of psychosocial care that are
cost-effective and adaptable to diverse cancer care systems. While
screening patients for distress has received the primary focus,
it is the subsequent steps, that is, what to do with the informa-
tion to best benefit the patient, that pose the most daunting chal-
lenges. Even if the referral to psychosocial services is made, there
is a substantial risk that the patient will not follow through with
the referral. Research in oncology, confirming findings in other
medical settings, has documented that screening alone without an
integrated system to ensure the appropriate triage, treatment, and
follow-up of distressed individuals is not likely to be cost-effective
in improving outcomes.1
A framework for an integrated psychosocial model was pre-
sented in the 2008 Institute of Medicine report 2 and emphasizes
five key components: (1) identification of patients with psycho-
social health needs; (2) care planning to address these needs;
(3)mechanisms to link patients with psychosocial health services;
(4)support of illness self-management; and (5)follow-up on care
delivery. Many challenges exist in providing services in the oncol-
ogy setting that can address these demands in a cost-effective and
accessible way. We will describe the collaborative care model as
an evidence-based approach to providing integrated psychosocial
care in the cancer setting. We conclude by providing practical
next steps to improving psychosocial services to cancer patients.
WHAT IS COLLABORATIVECARE?
Background
In the 1990s, Wagner and colleagues at Group Health Cooperative
in Seattle began describing the difficulties encountered by medi-
cal care providers, including organized health systems, in meeting
the demands placed on patients and families by chronic illness.
One of the primary problems identified was undetected or inad-
equately managed psychosocial distress. In response, the case
was made for integrated, patient-centered care of chronic illness,
or the chronic care model. 3 They described key elements of the
organization of care necessary to improve the outcomes of popu-
lations of patients with chronic illness. These include the use of
explicit plans and protocols; the reorganization of the practice to
meet the needs of patients who require more time, a broad array of
resources, and closer follow-up; systematic attention to the infor-
mation and behavioral needs of patients; ready access to necessary
expertise; and supportive information systems.
Applying the chronic care model as an integrated framework to
guide practice redesign has been shown to improve patient care
and health outcomes in ambulatory settings. Meta-analyses have
found that in patients with chronic conditions such as asthma,
congestive heart failure, diabetes, and depression, interventions
that included elements of the chronic care model improved clini-
cal outcomes, processes of care, and quality oflife.
To decrease fragmentation of oncology support services, orga-
nizations must develop a coherent system of supportive care that
is not only focused on coordinating services to most efficiently
target patient need, but also integrated with both oncology and
primary care services. To be successful, these new systems must
achieve both better interprofessional and interorganizational col-
laboration and better continuity of care. Use of navigators and care
managers to coordinate such care across services can eliminate
fragmentation and increase efficiency. Recently, the chronic care
model has been specifically adapted as a model of quality cancer
care. It emphasizes the need for an accountable practice team or
care manager to ensure that the cancer care and psychosocial care
are coordinated across the different phases of cancer and modali-
ties of care (Figure 99.1).4
Core Components of CollaborativeCare
The chronic care model has been adapted to improve the manage-
ment of mental disorders, most notably depression, leading to the
development of collaborative care models. Collaborative care is a
practical way of meeting the challenges of delivering effective and
integrated psychosocial care. Importantly, collaborative care does
not involve merely co-locating psychosocial providers in cancer
settings or working together with oncologists. Although models
718 SectionXV professional education and building supportive care programs

Community Health system

Resources and policies Collaborating health care organizations
Psychosocial and Decision support and Clinical information
self-management multidisciplinary systems and performance
support care planning measurement

C
o
Accountable o Phase of care
Collaborative practice r Diagnosis
Informed d
activated care plan team i Surgery
patients and and linked and/or n Adjuvant Rx
families interactions care a Survivorship
manager/ t Palliation
navigator i
Improved o
outcomes n

Figure99.1 Model of quality cancer care. Model of quality cancer care emphasizing the need for an accountable practice team or care manager to ensure care is coordinated among
different phases and modalities.Reprinted with permission from Edward Wagner. Institute of Medicine. Patient-Centered Cancer Treatment Planning:Improving the Quality of Oncology
CareWorkshop Summary. Washington, DC, National Academies Press,2011.

have evolved over time and vary somewhat in their approach, they
include the following core components5: Patient
Navigator
1. Delivery-system redesign using integration of a centralized care
Oncology Patient/
manager to link patients, primary medical (including oncology Team Caregiver
and primary care) providers, psychosocial care providers, and Palliative
Care
other clinic or community resources (Figure 99.2). This often
involves the redefinition of work roles for clinical and support
staff (Table99.1). Chaplaincy

2. Systematic, population-based approach to identifying needs and Care Manager

measuring outcomes using patient self-monitoring, predeter- Physical/
mined follow-ups, vigorous outreach, and semi-automated sys- Occupational
Therapy
tems. Treatment to target (e.g., remission) is supported by the Psychiatrist/
systematic use of validated treatment response measurement. Psychologist
Child Life
3. Electronic case registries to facilitate information flow and track
Primary Care Community
clinical information for the caseload, including screeners, rat- Resources
Physician
ing scales, provider notes, laboratory or other study results,
referrals, and outcomes. Nutrition

4. Strategies to engage, educate and motivate the patient as well as

monitor and enhance treatment adherence (e.g., motivational
and ethnographic interviewing strategies, printed or audiovi-
sual educational tools).
5. Brief, evidence-based, psychosocial treatments (e.g., problem-
solving, behavioral activation, cognitive behavioral therapy)
provided by care managers targeting identified problem areas
and working toward the patientsgoals.
6. Regular team caseload review and supervision of care managers
by appropriate specialists to recommend adjustments to care
and provide selective medical or psychosocial consultation for
treatment non-responders.
7. Stepped-care management model, which provides intensified
intervention to patients with inadequate clinical response to
initial treatment strategies.
Figure 99.3 shows the flow from screening to treatment and
follow-up in collaborative psychosocial oncologycare.
Figure99.2 Stakeholders in collaborative psychosocial oncology care. Solid lines
indicate routine direct interactions. Dotted lines indicate interactions based on
intensified steppedcare.
EVIDENCE BASE FOR
COLLABORATIVECARE
Collaborative Care for Depression in PrimaryCare
The most robust data for the collaborative care model is for treat-
ment of depression within primary care. The large IMPACT
(Improving Mood-Promoting Access to Collaborative Treatment)
and PROSPECT (Prevention of Suicide in Primary Care
Elderly:Collaborative Trial) studies tested collaborative care for
depression in older adults in primary care.6,7 In both studies, col-
laborative care was associated with significantly greater improve-
ments in depression and reduced suicidal ideation over 24months,
 Chapter99 collaborative psychosocial oncology caremodels 719

Table99.1 Members and Roles of the Collaborative Psychosocial Oncology Careteam

Member Roles
Care Manager Perform systematic follow-up clinical assessments to patients identified on distress screeners
Link oncology team, consulting specialists, primary care provider, and support staff by enhancing communication
Motivate, activate, and engage the patient in treatment
Provide education to the patient and family around distress, anxiety, depression, grief, and other mental health conditions
common in cancer patients
Provide education to the oncology team regarding nature and severity of distress and recommendations for management
Coordinate distress management plan with oncologyteam
Refer to community resources and follow-up on referrals to increase rates of follow-through
Provide brief, evidence-based psychosocial treatment (e.g., motivational interviewing, cognitive behavioral therapy, behavioral
activation, problem-solving, grief counseling)
Oncology Team Follow-up on recommendations from the care manager and/or consulting psychiatrist/psychologist, including prescribing
psychotropic medications under close guidance
Communicate any changes in patient distress levels to the care manager to facilitate the re-screening and follow-up process

Psychiatrist/Psychologist Provide supervision and weekly caseload review with care managers to recommend specific psychosocial interventions
Identify patients in need of more specialized consultation via the stepped care model and facilitation of referral to the
psychiatry/psychology service
Support care managers and monitor for provider burn-out

Provide regular training sessions to the care managers and oncology team to enhance provider education, particularly around
medications and brief psychosocial treatments
Participate in institutional quality improvement initiatives and monitoring

Primary Care Provider Communicate with the care manager and oncology team to provide patient history
Support transition back into primary care after completion of active cancer treatment
Patient Complete screeners and ratingscales
Partner with treatment team in shared decision-making and implementing recommendations (including medications,
counseling, behavioral strategies, and follow up appointments) and tracking outcomes
Communicate any new concerns to the care manager and/or oncology team

compared with usual care. IMPACT intervention patients also had
improved functioning and quality of life, and PROSPECT patients
with major depression had lower mortality rates in the interven-
tion group compared to usualcare.
Katon et al. developed a collaborative care model to address
the needs of patients with multiple problems occurring as symp-
tom or illness clusters.8 In their TEAMcare trial, they capitalized
on the observation that although certain symptoms or illnesses
tend to co-occur and exacerbate one another, they also tend to
have overlapping treatment guidelines. They found that a multi-
condition collaborative care treatment program of coordinated
care management for depression, diabetes, and coronary heart
disease using treat-to-target interventions for depression, blood
pressure, cholesterol, and glycated hemoglobin led to significant
improvement in 12-month depression, medical, and quality of life
outcomes, compared to usual care. Atwo-year cost-effectiveness
analysis found that intervention patients had sustained improve-
ment in depression-free days and lower mean outpatient health
costs of $594 per patient relative to usual care patients. The inter-
vention seemed to be a high-value program that for no or modest
additional cost markedly improved quality-adjusted lifeyears.
Meta-analyses examining the effectiveness of collaborative
care for depression in primary care have shown improved short-
and long-term depression outcomes compared with standard
care. Thota etal., in a meta-analysis of 69 trials,9 showed robust
evidence of the effectiveness of collaborative care (compared to
usual care) in improving depression symptoms, adherence, and
response to treatment, remission of symptoms, quality of life/
functional status, and satisfaction with care. Asystematic review
of the economic efficiency of collaborative care for depression
confirmed its cost-effectiveness and economic value.10
Application of Collaborative Care in Other
Conditionsand Medical Settings
Collaborative care has been applied successfully among patients
with multiple chronic medical conditions, such as osteoarthritis,
HIV, diabetes, coronary syndrome, and fibromyalgia. Research
has also shown that collaborative care programs that target both
depression and pain, which are common comorbidities in cancer
patients, can lead to greater improvements in both depression and
pain-related disability.11 Collaborative care treatment of depres-
sion can improve mental healthrelated quality of life, physical
functioning, and mood symptoms in post-coronary artery bypass
graft (CABG) patients as well as improve depression response and
remission rates in post-stroke patients.
The evidence base for collaborative care has expanded to the
treatment of other mental health conditions, such as anxiety. In
the CALM (Coordinated Anxiety Learning and Management)
study, a randomized controlled trial (RCT) of a care management
intervention for patients (N = 1004) with one or more anxiety
720 SectionXV professional education and building supportive care programs

IOM 2008 Report Collaborative Care

Recommendations Core Components

Psychosocial
Screening
Negative Screen
Re-screening
during care Systematic
Positive Screen transitions population-based
approach
1. Identification
of patients with
psychosocial SW Targeted
health needs Assessment

Electronic case
Patients flagged on registry
shared registry for
review

2. Care planning
to address Regular team
identified needs supervision
Case review with
psychiatrist/
psychologist
3. Mechanisms to
link patients with Strategies to
psychosocial engage, educate and
health services motivate the patient
Treatment initiated & brief, evidence-
(medications, based, psychosocial
4. Support of psychotherapy, treatment
illness self- Symptom Relapse
referrals) remission
management prevention plan
& ongoing
Insufficient response/relapse screening
Symptom
Re-consult with remission
psychiatrist/
5. Follow-up on psychologist & adjust
care delivery treatment Stepped-care
Insufficient
response/relapse

Referral to
psychiatry/
psychology

Figure99.3 Treatment flow in collaborative psychosocial oncologycare.

disorders (panic disorder, PTSD, social anxiety disorder, gener-
alized anxiety disorder) with or without major depressive disor-
der,12 collaborative care was associated with reduced depression,
anxiety, and functional impairment, compared to usual care. In
addition, components of collaborative care have been found to
be effective for treating addictions. While there is currently less
data available to support the use of collaborative care for treat-
ment of more chronic mental disorders, such as bipolar disorder
or schizophrenia, the PCARE (Primary Care Access, Referral, and
Evaluation) studies, which used collaborative care to embed pri-
mary care into the mental health clinic, did show improved access
to preventive medical care in patients with severe mental illness,
improved cardiac risk index, and better mental health-related
quality of life (QOL), compared to usual care.13
A recent Cochrane Review14 synthesized the results of 79 RCTs
(24,308 participants) of collaborative care for depression and
anxiety that represent a wide variety of settings, participants,
medical comorbidities, and treatment modalities. The authors
concluded that collaborative care is effective across a broad range
of healthcare settings, including underserved minority popula-
tions, and that it increases the delivery of guideline-concordant
care and improves both short- and long-term outcomes for depres-
sion and anxiety.
A meta-analysis of 57 trials examined the effect of the collab-
orative care model across a variety of treatment settings and men-
tal health conditions.15 This analysis revealed significant effects
across multiple disorders and care settings for clinical symptoms,
mental and physical QOL, and social role function, with no net
increase in total healthcare costs. For example, five of the trials
delivered interventions predominantly or exclusively via tele-
phone. The majority of the trials took place in primary care, but
nine of them were in medical specialty or multiple settings. Three
 Chapter99
of the trials focused on adults over age 60, and four included
exclusively minority participants. The analysis demonstrates that
the collaborative care approach is adaptable across medical set-
tings and patient populations and provides a robust clinical and
policy framework for care integration.
Application of Collaborative Care in Oncology Settings
There is evidence that the provision of psychosocial treatments using
a collaborative care approach that is integrated into cancer and pri-
mary care is convenient for patients, reduces the stigma associated
with treatment for mental disorders, builds on existing multidis-
ciplinary systems and relationships, and improves outcomes. The
four published randomized controlled trials summarized in Table
99.2 illustrate the successful application of the collaborative care
model among patients with cancer, including low-income racial
and ethnic minority patients. The unique components of these
studies highlight the flexibility and adaptability of the collaborative
care model for use in diverse clinical oncology settings.
In the first three studies, stepped collaborative care for depres-
sion consisted of trained care managers (nurses, so
collaborative psychosocial oncology caremodels 721
treatment (problem-solving therapy), and coordination of care,
including pharmacologic management, with medical/oncology
providers. Caseload review and treatment supervision was pro-
vided by a team psychiatrist. Patient populations and care set-
tings varied. The IMPACT study treated older adults with a cancer
diagnosis and other medical comorbidities in 18 primary care
clinics at eight diverse healthcare organizations across the United
States. The DCPC (Depression Care for People with Cancer) study
treated cancer survivors in ambulatory cancer clinics in the United
Kingdom, and the ADAPt-C (Alleviating Depression Among
Patients with Cancer) used bilingual care managers and navigators
to treat low-income, predominantly minority female patients in a
public-sector oncology clinic. All three studies showed both imme-
diate and persistent effectiveness of collaborative care, compared
to enhanced usual care, for decreasing depression and improving
QOL beyond the intervention period. Outcomes in cancer patients
in the IMPACT study were similar to the outcomes from the over-
all IMPACT study sample. Follow-up multicenter studies in the
United Kingdom that used adaptations of DCPC were recently