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242 Seminars in Oncology Nursing, Vol 31, No 3 (August), 2015: pp 242-250

PSYCHOSOCIAL INTERVENTIONS
FOR ADOLESCENTS AND YOUNG
ADULTS WITH CANCER
CELESTE R. PHILLIPS AND LORIE L. DAVIS

OBJECTIVES: To summarize and evaluate the studies published since 2007 on


psychosocial interventions designed for adolescents and young adults (AYA)
with cancer.
DATA SOURCES: PubMed, Ovid, and PsycINFO.
CONCLUSION: Our review confirms that the development and evaluation of
psychosocial interventions for AYA is still in its infancy. Only five studies
were identified and these generally had small samples and limited results.
IMPLICATIONS FOR NURSING PRACTICE: It is important for nurses to assess the
needs of AYA. Incorporating creative ways for AYA to express their needs and
self-reflect seems to be critically important and may help AYA cope positively
with the cancer experience.
KEY WORDS: Adolescents, young adults, cancer, psychosocial interventions,
review

C
ancer is 2.9 times more likely to occur survival rates of young children, AYA with cancer
in adolescents and young adults (AYA) have not seen the same improvement.2 Over the
ages 15 to 29 than in younger chil- past decade, there has been growing international
dren.1 Although medical advance- attention on addressing the specific needs of AYA
ments in pediatric oncology have improved the with cancer.3-6 AYA not only have unique medical
needs, but they also have many unique emotional,
social, spiritual, and physical needs. Recent
Celeste R. Phillips, PhD, RN, CPONÒ: Assistant research suggests that AYA are inadequately
Professor, Indiana University School of Nursing, Indi- served by current support services.7-9
anapolis, IN. Lorie L. Davis, MSN, RN, OCNÒ: Doctoral Despite the growing international attention, there
Student, Indiana University School of Nursing, Indian- are few psychosocial interventions designed specif-
apolis, IN.
ically for AYA with cancer. In 2009, Seitz and col-
Address correspondence to Celeste R. Phillips, PhD,
leagues,10 in a systematic review of peer-reviewed
RN, CPONÒ, 1111 Middle Dr., NU 425E, Indiana Uni-
versity School of Nursing, Indianapolis, IN 46202. articles reporting on psychological or psychosocial
e-mail: cephilli@iu.edu interventions for adolescents with cancer between
Ó 2015 Elsevier Inc. All rights reserved. 1988 and 2007, found only four such studies. These
0749-2081/3103-$36.00/0. studies had small sample sizes (n ¼ 14 to 78), and
http://dx.doi.org/10.1016/j.soncn.2015.05.004 only one, a small pilot study (n ¼ 21), reported
UPDATED PSYCHOSOCIAL INTERVENTIONS 243

significant improvement compared with a waitlist characteristics including age, gender, and ethnicity;
control group. We sought to update findings from type of study design; and theoretical framework.
the previously published review by conducting a Table 2 includes an overview of the interventions
systematic review of psychosocial interventions de- with abstracted data addressing: behavior(s)
signed for AYA with cancer published since 2007 encouraged: mode of delivery (ie, route and inter-
and by summarizing and evaluating these studies. vener, if applicable): timing of delivery: duration:
a description of the intervention: and a descrip-
tion of the control group. Table 3 describes the
METHODS methodological quality of the studies. Articles
were critiqued according to the following salient
Search Strategy features: randomization and processes descri-
To identify relevant studies addressing interven- bed (yes/no or not applicable for randomized,
tions for AYA with cancer, the following databases randomization processes described, and blinding),
were searched: PubMed, Ovid, and PsycINFO. In power analysis (yes/no reported), length of follow-
addition to the database search, reference lists of up, attrition, and the number of participants in
all relevant studies and review articles were each arm that completed all measures. Table 4 dis-
scanned for further references that met the inclu- plays the outcome variables of interest, measures
sion criteria. used, and significant findings.
The inclusion criteria were: (1) full-length, peer-
reviewed articles published between January 2008
and December 2014; (2) a study sample of AYA can- RESULTS
cer patients between the ages of 10 and 29; (3) En-
glish language; (4) uncontrolled or controlled The search produced only five studies that met
trials; and (5) measurement of psychosocial our inclusion criteria.12-16 One study included a
outcome variables. Exclusion criteria were: case sample of AYA who ranged from 9 to 20 years of
studies, editorials, abstracts, dissertations, and age,16 which was slightly outside our pre-
studies focused on adolescent survivors of child- specified age range of 10 to 29. We decided to
hood cancers. Although the National Cancer Insti- include this article because the majority of the
tute defines AYA as being between 15 and 39, for sample (78%) met this criterion (L. Wu, personal
this review we narrowed the age range to 15 to communication, March 2015).
29 years. This reflects the age range most commonly As shown in Table 1, three of the studies were
considered the AYA cancer population by the conducted in the United States12,14,15 and one in
oncology community and also narrows the develop- Taiwan.16 One international study was conducted
mental span for psychosocial interventions.11 in the United States, Canada, and Australia.13
Reference lists and abstracts for identified arti- Four studies were conducted with AYA,12,13,15,16
cles were scanned for their relevance. Using the and one study focused on the adolescent/family
key words: adolescents, young adults, cancer, dyad.14 Ages of AYA ranged from 9 to 29. Three
and interventions, a total of 242 articles were iden- studies included fewer than 100 partici-
tified; however, 233 were eliminated because they pants.12,14,16 The average age of research partici-
did not meet the inclusion criteria. Full copies of pants was not explicitly reported in one study13;
the nine articles that seemed to meet the inclusion instead, the percentage of participants in stratified
criteria were obtained. After reading these nine, age groups was reported. In the four other studies,
four were excluded because, for example, they mean age ranged from 13.2 to 17.3 years.12,14-16
used study samples of adolescent survivors of child- Gender was reported in all studies and females
hood cancer or gave descriptions of the interven- comprised from 31% to 45% of the samples.
tion protocol but did not describe results. Ethnicity was reported in four studies, and in
those studies from 50% to 75% of the samples
Data Organization were White.12-15 All studies were randomized
Data from the remaining five eligible articles were controlled trials; however, three were pilot
abstracted and organized into four separate studies.12,14,16 Theoretical frameworks were re-
tables by one person and verified by a second ported in only three of the reviewed studies.13,15,16
person. Table 1 focuses on: year published; As shown in Table 2, behavioral modification for
country of origin; population; sample size; sample active/effective coping, self-efficacy, and control
244
C.R. PHILLIPS AND L.L. DAVIS
TABLE 1.
Sample Demographics

Sample Characteristics
Gender Ethnicity Theoretical
Study Country Population N Age* (yrs) (% female) (% white) Design Framework

Jones (2010)12 US Adolescents (aged 12-18) 65 14.8 36.9 75.3 RCT/pilot Not specified
with solid tumors
Kato (2008)13 US/Canada/ Adolescents/young adults 371 13-14, 35.3%; 32.3 56.6 RCT Self-regulation Model of
Australia (aged 13-29) with 15-16, 30.7%; Health and Illness; Social
malignancies including 17-18, 21.3%; Cognitive Theory;
acute leukemia, 19-29, 12.7% Learning Theory
lymphoma, and sarcoma
Lyon (2014)14 US Adolescent (aged 30 dyads 16.3 40 50 RCT/pilot Not specified
14-20)/family dyads
with a cancer diagnosis
Robb (2014)15 US Adolescents/young adults 113 17.3 42.5 58.4 RCT Haase’s Resilience in
(aged 11-24) undergoing Illness Model (RIM);
stem cell transplant Robb’s Contextual
Support Model of Music
Therapy (CSM-MT)
Wu (2013)16 Taiwan Children/adolescents/ 58 14.1 (con) 44.8 (con.) Not RCT/pilot Lazarus’ Transactional
young adults with 13.2 (exp) 31 (exp.) reported theory
cancer (aged 9-20)

Abbreviations: RCT, randomized controlled trial; con, control; exp, experimental.


*Mean age reported unless otherwise specified.
TABLE 2.
Overview of Interventions

Timing of Intervention Brief Description


Study) Behavior Encouraged Delivery Mode Delivery Duration (min) of Intervention Control Group
12
Jones (2010) Effective coping, CD-ROM During active cancer Not reported Interactive multimedia Attention control
self-efficacy, treatment CD-ROM to educate (Handbook with
and control or off treatment adolescents about their similar information)
cancer. Seven TV screens
(like a network station) that
represented 7 different
adolescent-related topics.
Games also included to
enhance learning
Kato (2008)13 Adherence to treatment Video game play During active 60 Video game designed to Attention control
regimens and other via mini-computer cancer treatment increase adherence and (Video game with
behavioral outcomes (ie, promote positive self-care similar play structure
self-efficacy and control.) behaviors. Participants and controller
asked to play the games for interface)
at least 1 hour per week
during the 3-month study
period; game content
engineered to address
issues such as destroying
cancer cells and managing
common treatment-related
adverse effects such as

UPDATED PSYCHOSOCIAL INTERVENTIONS


bacterial infections,
nausea, and constipation
Lyon (2014)14 Communication Face-to-face trained During active 60 A family-centered advanced Treatment as usual
about treatment or certified facilitator cancer treatment care planning intervention;
preferences 3 weekly sessions in a
dydactic format. The
foundation for sessions
included: engaging the
participant in end-of-life
questions; respecting
choices; and expressing
medical, personal,
emotional, and spiritual
needs
Robb (2014)15 Active engagement Face-to-face During stem 60-90 (J. Haase, AYA development of a Attention control
and coping board-certified cell transplant personal) therapeutic music video to (Audiobooks)
skills/strategies music therapist communication, provide predictability,
March 2015) autonomy support, and

245
(Continued )
246 C.R. PHILLIPS AND L.L. DAVIS

were the most common behaviors encouraged by


the interventions and were addressed in four of
the reviewed studies.12,13,15,16 Another behavior
Control Group

encouraged included communication about treat-

Treatment as
ment preferences.14 Face-to-face contact as the
mode of delivery for the intervention was used in
usual
three studies.14-16 An interactive, asynchronous
CD-ROM or video game play was used in two
directly targeted Resilience

cognitive and/or behavioral


studies.12,13 Individuals who administered the
provide information about

effective skills to manage


sessions conducted over

completed within 1 week


modification; 3 modules;
in Illness Model risk and

identification and use of


treatment management
intervention program to

intervention varied across the studies and included

physical symptoms via


relationship support; 6

3 weeks; components
Brief Description
of Intervention

the participant themselves, music therapists, and

Modules 1-3 were


Psycho-educational
protective factors

trained research assistants or certified instruc-


and to facilitate

tors/facilitators. The delivery of the intervention


occurred during active cancer treatment in all of
the reviewed studies. The duration of the interven-
tion sessions was 60 minutes in two of the reviewed
studies13,14 and ranged between 60 and 90 minutes
in two studies.15,16 One study did not report the
Duration (min)

duration of the intervention.12 The descriptions of


the interventions showed that the psychosocial in-
terventions for AYA with cancer were rather com-
60-90

plex and had a wide variety of different elements.


Studies compared the intervention to treatment
as usual or to an attention control group.
Timing of Intervention

As shown in Table 3, all studies were random-


TABLE 2.
(Continued)

ized, although only two included a description of


cancer treatment
Delivery

the randomization process and details on blind-


ing.13,15 Three studies included a power anal-
During active

ysis,13,15,16 and all included a baseline assessment


before intervention or control. The follow-up as-
sessments commonly occurred from 1 to 3 months
post-intervention.12-14,16 Attrition was reported for
all of the reviewed studies and ranged from 4.91%16
trained research
Delivery Mode

to 59%,15 although all patients were accounted for


at the end of all studies.
Face-to-face

assistant

As shown in Table 4, there was an average of 5.4


outcome variables (excluding feasibility, accept-
ability) measured across the reviewed studies.
Coping12,15,16 and quality of life12-14 were the
most common outcome variables that were explic-
Behavior Encouraged

itly identified and measured across the reviewed


studies. Only one of the reviewed studies demon-
strated positive, significant findings among the
Effective coping
and symptom
management

research variables of interest.15 The other four


studies reported mixed findings relative to these
factors.12-14,16

DISCUSSION
Wu (2013)16
Study)

Our updated review confirms that little


advancement has been made in intervention sci-
ence for AYA with cancer since the last review
UPDATED PSYCHOSOCIAL INTERVENTIONS 247

that Completed all Measures


was published.10 We identified five intervention
No. of Patients in Each arm

studies published since 2008 – taken together

Intervention: n ¼ 17 dyads
with the last review published10 only nine inter-

Control: n ¼ 13 dyads
Intervention: n ¼ 164
vention studies have been conducted with AYA
Intervention: n ¼ 35

Intervention: n ¼ 37

Intervention: n ¼ 29
with cancer since 1988 and only two have been
Control: n ¼ 140
Control: n ¼ 30

Control: n ¼ 30

Control: n ¼ 29
large randomized controlled trial studies,13,15
Furthermore, these few studies generally had
small samples and limited results, which serves
as a call to action for more intervention develop-
ment and evaluation for this underserved cancer
population.
17% attrition (intervention)
21% attrition (control)

Strengths
Attrition

Despite the few studies found in this updated


4.91% attrition

review, several strengths were identified among


59% attrition
8% attrition

7% attrition

the studies. First, two studies included samples


outside of the United States, including Australia,
Canada, and Taiwan.13,16 Second, although
three studies had small sample sizes (n ¼ 58 to
T2: 3 months post-intervention

T2: 3 months post-intervention

T3: 3 months post-intervention

65), these studies were identified as pilot


T2: 1 month post-intervention
T3: 100 days post-transplant

studies.12,14,16 Pilot studies are very important in


Length of Follow-up

the development and evaluation of interventions,


T2: After 6th session

and the pilot studies described here had fairly


Methodological Quality

reasonable sample sizes to evaluate the accept-


T3: 3 months
T1: Baseline

T1: Baseline

T1: Baseline

T1: Baseline

T1: Baseline

ability of the intervention and provided recom-


T2: 1 month
TABLE 3.

mendations for either improving the intervention


itself or its evaluation.12,14,16 Third, the average
number of participants among all of the reviewed
studies was much larger than the studies in the
Described/Requirement

previous published review (133.4 vs 32.3 partici-


Yes/20% attrition rate
Power Analysis

Yes/50 each group

Yes/65 each group

Yes/68 each group

pants). Fourth, all of the interventions were


feasible to implement during active treatment,
Not reported

which is important because this is a time when


cancer-related distress can be at its highest. Fifth,
three studies13-15 consisted of samples that were
#58% white, suggesting a good representation of
ethnicity. Sixth, four interventions12-15 were
Abbreviations: T1, Time 1; T2, Time 2; and T3, Time 3.
ii. Randomization Process Described

developed specifically based on the needs of AYA


with cancer (ie, through literature reviews, focus
groups, individual interviews, or advisory panels),
i. Randomized

which is particularly important when developing


iii. Blinding

age-appropriate interventions. Lastly, the attrition


rates for four of the studies were reasonable. Robb
iii. Not reported

iii. Not reported


ii. Not reported

ii. Not reported

ii. Not reported

and colleagues15 had a high attrition rate, but this


was because of the severity of the treatment and
iii. Yes

iii. Yes
ii. Yes

ii. Yes

disease within the sample.


i. Yes

i. Yes

i. Yes

i. Yes

i. Yes
i. No

Another unique strength identified was that


three of the studies were technology-based (ie,
Jones (2010)12

Robb (2014)15

interactive multimedia, video-game, and develop-


Lyon (2014)14
Kato (2008)13

Wu (2013)16

ment of a music video).12,13,15 Using techno-


Study)

logy and electronics has been regarded as highly


favorable to AYA.17 Additionally, the technology-
based interventions described here all provided
248 C.R. PHILLIPS AND L.L. DAVIS

TABLE 4.
Outcome Variables and Significant Findings

Outcome Variables
Study of Interest Measure Significant Findings
12
Jones (2010) 1. Control Multidimensional Health Locus of Adolescents who received the
Control Scale Form B (MHLC-B) CD-ROM were significantly more
2. QOL Pediatric Oncology QOL Scale likely to increase their internal locus
(POQOLS) of control scores (P ¼ 0.016);
3. Coping Style KIDCOPE however, no significant differences
4. Self-efficacy Questionnaire developed for study were observed in regard to QOL,
5. Cancer knowledge Questionnaire developed for study coping, self-efficacy, or knowledge
6. Acceptability, use, Questionnaire developed for study
and satisfaction
Kato (2008)13 1. Treatment adherence Medication Adherence Scale (MAS); Self-reported treatment adherence did
Chronic Disease Compliance not differ significantly between
Instrument (CDCI) groups as measured by the MAS
2. Antibiotic adherence MEMS-cap monitoring; 6-MP blood and CDCI (group  time interaction,
assays P ¼ 0.503; P ¼ 0.78, respectively);
3. Self-efficacy Questionnaire developed for study MEMS-cap monitoring showed a
4. Knowledge Questionnaire developed for study 16% increase in adherence in the
5. QOL Pediatric QOL– Generic Core Scale intervention group; A significantly
Version 4.0; Functional Assessment greater increase in cancer-related
of Cancer Therapy- General knowledge and cancer-specific
6. Stress Perceived Stress Scale self-efficacy was shown over time in
7. Control Multidimensional Health Locus of the intervention group (group  time
Control Scale Form C interaction of P ¼ 0.035 and
P ¼ 0.011, respectively); The
intervention group did not
demonstrate significant
group  time interactions for the
measures of adherence, stress,
control, or QOL
Lyon (2014)14 1. Anxiety Beck Anxiety Inventory Adolescents’ anxiety decreased
2. Depression Beck Depression Inventory significantly from baseline to
3. Pediatric QOL Pediatric QOL Inventory 4.0 Generic 3 months post-intervention in both
Core Scales groups (b ¼ 5.6; P ¼ 0.0212);
4. Spiritual Well-being Spiritual Well-Being Scale of the Total spirituality scores (b ¼ 8.1;
Functional Assessment of Chronic P ¼ 0.0296) were significantly
Illness Therapy- Version 4 higher among the intervention
5. Satisfaction with intervention Satisfaction Questionnaire versus control group. 100%
6. Feasibility of intervention % eligible and enrolled, % attendance attendance at all 3 sessions, 93%
at sessions, % retention at follow- retention at 3 months post-
up, and % data completeness at intervention, 100% of families rated
follow-up intervention as worthwhile, and
adolescents’ rating as worthwhile
increased over time (65% to 82%).
Robb (2014)15 1. Illness-related distress McCorkle Symptom Distress Scale; At T2 the intervention group reported
Mishel Uncertainty in Illness Scale significantly better courageous
2. Coping-defensive Jalowiec Coping Scale-Revised: coping (effect size, 0.505;
Emotive & Evasive Subscales P ¼ 0.030); At T3 the intervention
3. Spiritual perspective Reed Spiritual Perspective Scale group reported significantly better
4. Social integration Perceived Social Support-Health Care social integration (effect size, 0.543;
Providers; Perceived Social P ¼ 0.028) and family environment
Support-Friends; Perceived Social (effect size, 0.663; P ¼ 0.008);
Support-Family Moderate non-significant effect
5. Family environment Family Adaptability/Cohesion Scale II; sizes for spiritual perspective (effect
Parent-Adolescent Communication size, 0.450: P ¼ 0.071) and
Scale; Family Strengths Scale
(Continued )
UPDATED PSYCHOSOCIAL INTERVENTIONS 249

TABLE 4.
(Continued)

Outcome Variables
Study of Interest Measure Significant Findings

6. Coping-courageous Jalowiec Coping Scale-Revised: self-transcendence (effect size,


Confrontive Subscale, Optimistic 0.424; P ¼ 0.088) were shown
Subscale, Supportant Subscale
7. Hope-derived meaning Herth Hope Index: Expectancy/
Interconnectedness Subscales,
Positive Readiness Subscale
8. Outcomes Reed Self-Transcendence Scale;
Haase Resilience in Illness Scale
Wu (2013)16 1. Symptom severity Perceived Symptom Severity Scale No significant difference in coping
2. Coping Pediatric Cancer Coping Scale scores between groups;
3. Acceptability of the 4-item acceptability survey with intervention group reported
intervention Likert-type responses significantly lower scores in GI
problems (P ¼ 0.03) and pain
(P ¼ 0.02); most symptoms
decreased significantly over time
in both groups

Abbreviations: QOL, quality of life; MEMS, Medication Event Monitoring System.

elements to support self-efficacy, control, or au- colleagues16 also encouraged the AYA to self-
tonomy, which corresponds to fostering healthy reflect on their treatment-related stressors,
adolescent development.18 discuss current coping styles, and then role-play
new coping techniques with a facilitator. Robb
Limitations and colleagues’ study was the only one that
Several limitations were also identified. First, fe- demonstrated significant results on coping.
males were somewhat underrepresented in all of The fourth limitation was that all but one
the studies. This is an important consideration study13 was underpowered (ie, #80%), suggesting
for future intervention studies because female that researchers need to enhance their AYA
AYA have been identified as having greater recruitment efforts and monitor the recruitment
distress than male AYA.19,20 Second, few age- process closely over the length of the grant period.
appropriate theories were used to guide the devel- The fifth limitation was that the length of post-
opment or evaluation of these studies. Of the three intervention follow-up tended to be fairly short
studies that used a theoretical framework, only (1 to 3 months). Therefore, it is unclear whether
Robb and colleagues15 used a theory that was or not these interventions had a long-term impact
age-appropriate. The other theories have most on the AYA. The sixth limitation was the lack of
commonly been evaluated with adult populations consistency in the outcome instruments used,
and may not hold true for the adolescent experi- which made it difficult to compare results across
ence. This limitation is likely caused by the lack the studies. Lastly, most of the studies only used
of well-developed and evaluated theories devel- self-report measures to evaluate the intervention.
oped or tested for the adolescent population, In conclusion, this update review indicates
particularly with cancer. Third, only two studies that the development and evaluation of age-
focused specifically on actively involving the appropriate psychosocial interventions for AYA
AYA in the development of effective coping skills with cancer is still in its infancy. However, we
through self-reflection and communication of are starting to finally see some larger randomized,
their cancer experience. Robb and colleagues15 controlled trials with promising results that incor-
provided a structured creativity opportunity for porate innovative technology, which is age-
AYA to self-reflect, identify, and express what appropriate and considered favorably by AYA.
was important to them through the development Future research should focus on conducting
of their own personalized music video. Wu and more multi-site studies to obtain larger sample
250 C.R. PHILLIPS AND L.L. DAVIS

sizes. Researchers will also need to overestimate IMPLICATIONS FOR NURSING PRACTICE
their targeted sample size because of the often se-
vere and complex nature of cancer to obtain Although two of the reviewed interventions13,15
adequate power to detect differences. Secondly, are ready for additional transitional research,
research should continue to develop interventions none are ready to be immediately translated into
based on the specific needs of AYA and to obtain clinical practice at this time. However, what can
their feedback in the development and/or be taken from this review is that it is extremely
improvement of these interventions. Additionally, important for nurses to evaluate and consider
as more intervention studies are conducted inter- the needs of AYA. Incorporating creative ways
nationally it will be important to evaluate cultural for the AYA to express their needs and concerns
differences so that efforts are made to support and to self-reflect on their experiences seems to
these potential differences. Lastly, consistency in be critically important and may be a way for
instruments to evaluate outcomes will help future nurses to help AYA cope positively with the cancer
comparison analyses. experience.

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