CT Community Profile 2011 (Komen CT)

2011
COMMUNITY PROFILE
OF BREAST CANCER
IN CONNECTICUT
EXECUTIVE SUMMARY
TABLE OF CONTENTS
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TABLE OF CONTENTS ........................................................................................................... 1

Disclaimer: ................................................................................................................................... 2
ACKNOWLEDGEMENTS ........................................................................................................ 3
INTRODUCTION ........................................................................................................................ 4
Affiliate History .......................................................................................................................... 4
Organizational Structure ......................................................................................................... 5
Description of Service Area .................................................................................................... 5
Purpose of Report .................................................................................................................... 6
BREAST CANCER IN AFFILIATE SERVICE AREA ........................................................ 7
Methodology.............................................................................................................................. 7
Overview of Breast Cancer in Connecticut .......................................................................... 7
Demographic Overview of Connecticut ................................................................................ 8
Communities of Interest and Conclusions............................................................................ 9
HEALTH SYSTEMS ANALYSIS OF TARGET COMMUNITIES .................................. 15
Overview of Continuum of Care and Methodology ........................................................... 15
Overview of Community Assets ........................................................................................... 16
Legislative Issues in Target Communities.......................................................................... 17
Public Policy Perspectives .................................................................................................... 17
Health Systems Analysis, Findings & Conclusions .......................................................... 21
BREAST CANCER PERSPECTIVES IN THE TARGET ................................................. 23
Methodology............................................................................................................................ 23
Quantitative Data Sources .................................................................................................... 23
Community Provider Survey ................................................................................................. 23
Quantitative Data Overview .................................................................................................. 25
Survey Findings ...................................................................................................................... 26
Access to Breast Cancer Care and Services ................................................................ 26
Barriers to Access .............................................................................................................. 26
Identifying the Underserved In Connecticut ................................................................... 27
Improving Programs and Services .................................................................................. 28
Qualitative Data: Ensuring Community Input in Research ............................................. 28
Qualitative Data Sources and Methodology .................................................................. 28
Qualitative Data Overview ................................................................................................ 29
Experiences with Late Stage Cancers ................................................................................ 35
Summary of Findings ............................................................................................................. 37
SELECTING AFFILIATE PRIORITIES ................................................................................ 39
KOMEN CONNECTICUT PRIORITIES ............................................................................... 40
AFFILIATE ACTION PLAN AND RECOMMENDATIONS ........................................... 41
©2011 The Connecticut Affiliate of Susan G. Komen for the Cure Page |1
Disclaimer:
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The information in this Community Profile Report is based on the work of The
Connecticut Affiliate of Susan G. Komen for the Cure® in conjunction with key
community partners. The findings of the report are based on a needs assessment
public health model but are not necessarily scientific and are provided "as is" for general
information only and without warranties of any kind. Susan G. Komen for the Cure and
its Affiliates do not recommend, endorse or make any warranties or representations of
any kind with regard to the accuracy, completeness, timeliness, quality, efficacy or non-
infringement of any of the programs, projects, materials, products or other information
included or the companies or organizations referred to in the report.
ACKNOWLEDGEMENTS
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Volunteers are the core foundation of any organization, its activities, community
involvement and success. The individuals who volunteered to join the Komen
Connecticut Community Profile Team demonstrated this core and we appreciate their
commitment. Each volunteer brought a level of knowledge and expertise with breast
cancer, breast center and data management, community hospitals and medical services
available throughout the state.
A special thank you to their employers, Saint Francis and Hartford Hospital’s, State of
Connecticut, and Connecticut Surgical Group for allowing each to commit the hours
required to tell this story. We would also like to express our appreciation to Marian
Evans, M.D., CRA, Associate Professor, School of Health and Human Services for her
contribution to this project.
Komen Connecticut and the Community Profile team are indebted to all the women,
social workers and physicians who shared their experiences and stories. The
knowledge gained allowed us to understand the challenges faced by women and
families impacted by breast cancer. The recommendations in this report are a result of
their story; it is our hope they will have a positive impact on breast education, screening
and treatment in Connecticut.
Sonja L. Larkin-Thorne, Chair Community Profile Team

Member, Komen Connecticut Board of Directors
2011-2012 Consumer Representative, National Association of Insurance
Commissioners
Community Profile Team:
Lou Gonsalves PhD, Epidemiologist, Connecticut Tumor Registry
Kristen Noelle Hatcher, JD, Director Grants & Mission Initiatives, Susan G. Komen for
the Cure Connecticut
Sally Lerman, MS, CHES, Health Promotion Coordinator, Saint Francis Hospital and
Medical Center
Ginelle McPherson, MS, Cancer Program Manager, Helen & Harry Gray Cancer Center,
Hartford Hospital
Anne Morris, Executive Director, Susan G. Komen for the Cure Connecticut
Roxanne Rotondaro, MPH, Coordinator/Practice Mgr., Connecticut Surgical Group, LLC
INTRODUCTION
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Affiliate History
Nancy G. Brinker promised her dying sister, Susan G. Komen, that she would do
everything in her power to end breast cancer forever. In 1982 that promise became
Susan G. Komen for the Cure®. Today, Komen for the Cure is the world’s largest
network of breast cancer survivors and advocates.
In 1994, the first Komen Connecticut Race for the Cure® was held in New Britain,
Connecticut. Six years later, on October 4, 1999 the Connecticut Affiliate of Susan G.
Komen for the Cure® (Komen Connecticut) was established. Komen Connecticut works
throughout the State of Connecticut to fulfill the promise — to save lives and end breast
cancer forever by empowering people, ensuring quality care for all and energizing
science to find the cures. This mission is based on the promise made by Nancy to her
sister when little was known about the disease.
Komen Connecticut’s work focuses on educating the community on breast health and
breast cancer, working to ensure that screening and treatment are available to all
residents of Connecticut and raising funds to support breast cancer research. Since its
inception, Komen for the Cure has invested over $21 million in Connecticut in these four
areas of focus – education, screening, treatment and research.
Organizational Structure
Komen Connecticut is based in Farmington, Connecticut. The organizational
components of Komen Connecticut are the Board of Directors, the Executive
Committee, various standing Board committees and the staff. An 11 member Board of
Directors chaired by Ann Hogan, currently works with a 5 person staff, 3 full time and 2
part time, to fulfill the Komen promise locally: to save lives and end breast cancer
forever. Figure 1 depicts Komen Connecticut’s organizational structure.
Figure 1. Komen Connecticut organizational chart.
Description of Service Area

The Connecticut Affiliate serves the entire State of Connecticut from Greenwich in the
southwest, Salisbury in the northwest, Thompson in the northeast and Stonington in the
southeast. Connecticut is bordered by New York to the West, Massachusetts to the
North, Rhode Island to the East and the Long Island Sound to the South. Figure 2
depicts Affiliate funding for the past eight years throughout the state.
Figure 2. Affiliate grantees, 2004-present.
Purpose of Report
To meet our promise to save lives and end breast cancer forever, Komen Connecticut
relies on information obtained through the Community Profile process to establish
priorities and guide our work in Connecticut. The purpose of the Community Profile is to
further illuminate areas of need for breast health promotion and breast cancer
education, screening, treatment and support within the State of Connecticut. The
Connecticut Affiliate has granted over $10 million to community based breast health
organizations since its inception in 1999. This report intends to describe the varied
breast health needs in the state as well as potential areas in which Komen
Connecticut’s programs and funding might help advance the network’s promise of
ending breast cancer. Potential opportunities and areas of interest have been drawn
from analyses of breast cancer statistics, policies and programs in the state that may
impact breast health and exploratory, primary data collection among providers and
breast cancer survivors in the state. After synthesizing data from various sources, this
report presents data-driven priority areas from which the Affiliate intends to develop
funding decisions for the years 2012-2014. This report provides abridged analyses of
the data collected and reviewed by the Affiliate—additional information on the data can
be obtained by contacting the Affiliate office at 860-321-7806.
BREAST CANCER IN AFFILIATE SERVICE AREA
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Methodology
Breast cancer occurs in women at a significantly higher rate than men. Therefore, the
Affiliate has chosen to focus its mission to reduce breast cancer mortality in women
where the impact will be greatest.
Statistics reviewed for this Community Profile include data derived specifically for
Komen Connecticut by the State of Connecticut Department of Public Health.
Additional data were obtained from the Centers for Disease Control and Prevention and
the U.S. Census Bureau. Statistics were reviewed for their relevance to the current
breast health situation in Connecticut as well as their applicability for targeting
geographic areas smaller than the state.
Overview of Breast Cancer in Connecticut

The State of Connecticut has the second highest incidence of female breast cancer in
the nation1 with 2,920 new breast cancer cases diagnosed in 2008 2. Connecticut ranks
35th in the nation with respect to breast cancer mortality3, 490 women died from breast
cancer in 20084. Table 1 summarizes key breast cancer statistics for women in
Connecticut by race and Hispanic ethnicity.
Table 1, Breast Cancer in Connecticut Women

Race/
Breast Cancer Estimate Connecticut a United States b
Ethnicity
Age-adjusted incidence rate per 100,000
2006-2008 2007
women (95% confidence limits)
All races/
136.1 (133.2-139.1) 120.4 (119.8-120.9)
ethnicities
White 138.1 (135.0-141.2) 121.0 (120.4-121.5)
Black 112.9 (103.6-122.8) 117.0 (115.4-118.5)
Hispanic 120.9 (109.7-132.9) 88.2 (86.6-89.7)
Age-adjusted mortality rate per 100,000
2005-2007 2007
women (95% confidence limits)
All races/
23.0 (22.0-24.3) 22.8 (22.6-23.1)
ethnicities
White 23.0 (21.8-24.3) 22.2 (22.0-22.5)
Black 28.1 (23.4-33.4) 31.4 (30.6-32.3)
Hispanic 11.5 (8.1-15.8) 14.6 (14.0-15.3)
Percentage stage IV diagnoses 2006-2008 -
All races/
4.5% -
ethnicities
White 4.4% -
Black 6.4% -
Hispanic - -
Notes:
 Hispanic origin is not mutually exclusive from race categories (white, black).
 Statistics for other races (Asians, Pacific Islanders, American Indians/Alaska Natives) are not presented due
to small numbers leading to unreliable rate estimates.
Data Sources: a Connecticut Tumor Registry; b United States Cancer Statistics 2007
The incidence of breast cancer has varied over the past 40 years, with rates increasing
steadily, and then leveling off over the past few years. Breast cancer mortality has seen
a consistent decline thought to be due to early detection (mammographic screening)
and improved treatment and survival. The survival rate is a measure of how long people
live after diagnosis with cancer. The relative survival rate is defined as the ratio of a
cancer patient's chance of surviving a given time interval to that of a person of the same
age and sex in the general US population (i.e., the rate has been adjusted for mortality
in the general population). The 5-year relative survival for Connecticut women
diagnosed with breast cancer is over 90%; however, the survival rates varies greatly
with the stage of the cancer at diagnosis (Table 2).
5
Table 2 , Five Year Relative Survival Rate for Connecticut Women Diagnosed 1999-2003 and
Followed Through 2008
5 year relative 95% lower 95% upper
Stage at diagnosis
survival % confidence limit confidence limit
Localized 99.5 97.4 99.9
Regional 87.2 85.7 88.6
Distant 25.4 21.8 29.1
All stages 90.9 90.0 91.6
While two-year mammography rates suggest that Connecticut may be reaching many
for early screening and detection, concerns remain about reducing mortality and illness
severity among several populations. Data from the Behavioral Risk Factor Surveillance
System indicate that 84.1% of Connecticut women aged 40+ years have had a
mammogram in the last 2 years compared with national averages of 76% for women
40+ years; however, racial and ethnic disparities for mammography persist (Table 3).6
Table 37, Connecticut and U.S. Mammography Rates

Connecticut U.S.
Percent of women 40 years and older 84.1% 76.0%
who have had mammogram in the last
two years (BRFSS, 2008)
White 84.7% 75.9%
Black 81.7% 79.3%
Hispanic 79.8% 73.5%
The Community Health Data Scan for Connecticut, commissioned by the Connecticut
Health Foundation, demonstrates that African American women in the urban centers
and Hispanic women in manufacturing centers are among the least likely in the state to
use mammography screening.8
Demographic Overview of Connecticut
Connecticut is the second smallest state and within it has extremes of wealth and
poverty; it has the largest disparity between poverty and wealth of all fifty states, second
only to New York.9 There are approximately 3.5 million people residing in Connecticut
based on the 2010 census10. Table 4, presents a demographic profile of the state.
Table 4, Demographic Profile of Connecticut11

Demographic Description Measure
Total Population 3,574,097
Median Household Income $67,721
Individuals living below the poverty line 8.7%
Ethnic Breakdown of State Population White 77.6%
Hispanic 13.9%
Black 10.1%
Asian/PI 3.8%
Native American 0.3%
Two+ races 2.6%
Percent of population 65 years or older 8.2%
When compared to the other states and territories, Connecticut is more highly educated,
less ethnically diverse, more expensive to live in and less impoverished.12 In terms of
insurance coverage, it is estimated based on the 2007 data that there are 142, 975
uninsured women in the state.13 The populations with the highest uninsured rates are in
the urban centers.14 Because Connecticut is a small geographic region with large
achievement gaps in education, health, and income, geographic mapping is essential to
the Affiliate’s mission.
Communities of Interest and Conclusions
The communities of interest were selected as follows, focusing on areas with high rates
of breast cancer mortality and high proportions of late stage cancers where
interventions will likely have most impact. Connecticut towns were ranked by age-
adjusted mortality rate (2004-2008) and those towns with rates higher than the state
rate, and where there were 4 or more deaths per year were selected. (Rates based on
few cases or deaths per year have a high standard error and are considered unreliable).
Similarly, the towns were ranked by the proportion of late stage (AJCC stage III and IV)
breast cancers diagnosed (2004-2008) and those towns with a proportion higher than
the proportion for the entire state, and where 20 or more late stage tumors were
diagnosed, were selected. This method identified a total of 39 Connecticut towns (Table
5).
Table 5, Target Towns

Bloomfield Hamden Norwalk Waterbury
Branford Hartford Norwich West Hartford
Bridgeport Manchester Shelton West Haven
Cheshire Meriden South Windsor Westport
Danbury Middletown Stamford Wethersfield
East Hartford Milford Stonington Windsor
East Haven Naugatuck Stratford
Enfield New Britain Torrington
Farmington New Haven Trumbull
Glastonbury New Milford Vernon
Groton North Haven Wallingford
The towns targeted vary widely with regards to socioeconomic factors. Connecticut’s
capital city, Hartford, is one of our target towns. It has a poverty level of 31.6 percent
which is more than double the national average of 13.5 percent15. However, also
included in our target towns is Glastonbury, which has a poverty level of 1.9 percent16.
There are several towns with populations that reported speaking a language other than
English at home at levels higher than the national average, including, Hartford,
Bridgeport, Stamford, Danbury, Norwalk17. The people in the target towns are
graduating high school at levels above the national average in all but the following
towns- listed in order from the lowest to highest percentage: Hartford, Bridgeport, New
Britain, Waterbury, New Haven, Meriden, Danbury, and East Hartford.18 The African
American and Hispanic communities in the state are concentrated in the state’s urban
centers and this is reflected in the census data for our target communities, with the
occasional pocket of diversity in towns such as Bloomfield19.
While not used in the town selection process, the age-adjusted incidence rates in the
target towns were also examined. The maps below show the age-adjusted mortality and
incidence rates and the proportions of late stage diagnoses in the selected towns
(Figures 3-5).
Figure 3. Map of mortality.
Figure 4. Map of incidence.
Figure 5. Map of late stage.
Figure 6 shows a composite map highlighting the towns with age adjusted mortality
rates higher than the state rate and percentages of late stage diagnoses higher than the
state average. Towns that have incidence rates that are higher than the state incidence
rate are indicated with a star.
Figure 6. Selected areas of interest.
HEALTH SYSTEMS ANALYSIS OF TARGET COMMUNITIES
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Overview of Continuum of Care and Methodology
In 2009, the Affiliate completed a comprehensive analysis of the programs and services
throughout the state that would be an asset to women’s breast health, the Affiliate relied
on three sources of data. First, the Affiliate compiled listings of all the breast cancer
organizations and organizations providing breast cancer screening, early detection
and/or treatment support service. Second, an Affiliate intern developed a random list of
assets using publicly available sources like the internet and the phone directory. Third,
the Affiliate cross-checked these lists and then identified additional assets based on lists
independently compiled by MATRIX, a local public health consultant firm.
The following clinical and non-clinical resources were mapped:
1. Hospitals
2. Cancer Centers
3. Community Health Centers (with comprehensive cancer care services)
4. Breast health and cancer organizations
5. Official Connecticut Breast and Cervical Cancer Early Detection Program
(CBCCEDP) sites
6. Local Health Departments (with breast cancer prevention programs)
7. Support networks or support group organizations; and
8. The Connecticut Affiliate’s grantees (2004-present)
Assets were identified based on the current availability of programs and services most
relevant to breast health such as screening, diagnostic services, treatment, participation
in clinical trials, community outreach programs and educational materials,
complimentary therapy services, support groups and/or palliative care.
Data from 2009 continue to be current and was used in our analysis for this Community
Profile. Basic analysis of the asset map included considering the location of breast
health assets in relation to disease burden and in relation to the state’s population.
Areas with surpluses and deficits of assets were considered. A second level of
analyses considered the location of assets and disease burden relative to the Affiliate’s
recent funding (last five years).
All of the identified assets were contacted and asked to participate in the provider
survey and/or provider interviews that comprise the exploratory data process of the
Community Profile. Findings from this Affiliate survey of clinical and non-clinical
providers as well as interviews with community providers also contributed to the
identification of additional assets and gaps in services for the target towns in the state.
Promising practices that have gained interest in the state are patient navigation
programs as well as creative outreach approaches that emphasize the tailoring of
programs to better suit the needs of sub-populations. Patient navigation refers to
guidance and support provided by trained personnel to persons with abnormal cancer
screening results or a positive cancer diagnosis. Patient navigators help patients
understand their condition and options, while traversing a multitude of paperwork,
facilities, and procedures that begin with the abnormal screening result. These
navigators become a patient’s point-persons for managing their illness within the health
care systems that they will use for care. Four hospitals or health care systems currently
offer patient navigation type programs in Bridgeport, Farmington, Hartford and New
Haven. While national (NCI and NIH-sponsored) evaluations are ongoing, anecdotal
evidence suggests that these programs help women better cope with their cancer
diagnoses and better navigate the health care systems they encounter and therefore,
improve their health screening and follow-up behaviors in the short term, and their
health outcomes in the long term.20 Evaluation studies of patient navigation programs in
various regions of the country have been promising, but not decisive. Further study of
the impact of their programs is needed.
Creative outreach or cultural tailoring strategies are often employed as a means of

reaching “hard to reach” and/or minority populations. These unconventional strategies
for improving health screening and health outcomes primarily consist of bringing
acceptable health promotion messages and interventions to people where they already
live, work, and spend time e.g. hair and nail salons, barbershops, houses of worship,
schools and community centers. These programs may also modify features of the
intervention so that they are more acceptable to the population of interest e.g. using
different presentation formats. Some community health worker programs may be
described as tailored outreach strategies.
Overview of Community Assets
The breast health assets are concentrated in and around population centers of the
state. The New Haven and Hartford areas boast particularly rich sets of assets as these
areas host universities with medical schools as well as multiple cancer centers. New
Haven has the state’s only NCI-designated Comprehensive Cancer Center at Yale
University; and Hartford Hospital has the state’s only NCI-designated Community
Cancer Center. While every county has some breast health assets, the concentration
and distribution varies across the state. For example, in Hartford County services are
concentrated in the urban center, which suggests long travel distances to access
services as well as potential transportation issues and timing challenges for the elderly,
some disabled populations and lower income, working women who have difficulty
seeking services due to work and home responsibilities. Similar issues might arise for
women in Fairfield County. Rural areas have transportation issues related to the
distance between population and services. By contrast, although Bridgeport has a
nearby cancer center and is the largest city in the state, the surrounding towns, like
Fairfield, appear to have better access to breast health resources. While the number of
assets, their placement and the services they provide are critical, both population (e.g.,
income, insurance status, and car ownership) and infrastructure (e.g., accessibility and
variety of public transportation, formalized partnerships between local institutions and
major assets such as cancer centers) characteristics should be considered in order to
best understand access issues.
The primary foci of the Komen Connecticut’s grants program are: 1) to increase
awareness and educate women about breast cancer, 2) to ensure screening and
treatment is available to all residents of Connecticut, and 3) to reduce breast cancer
mortality rates in Connecticut by funding community-based programs. As depicted in
Figure 2 earlier in the document, the Affiliate’s grantees reach most geographic regions
of the state
The Affiliate responded to the needs compiled in the 2009 report. The current slate of
grantees provides targeted services to the Affiliate’s core populations to address breast
cancer needs in the state: the uninsured, the underinsured, ethnic minorities, and low
income women. Outreach, education and screening services were the most commonly
funded programs. The two mobile mammography programs funded as well as the
numerous patient navigation programs, diagnostic follow up and treatment support
services all aim to increase the availability of services and better coordinate treatment
for medically underserved women. The Affiliate’s past and present support of health
interpreters for Spanish-speaking populations also aims to improve access by
minimizing cultural and linguistic barriers for low-income women. Increasing diversity
within the state may require consideration of other languages/cultures. Information on
size and placement of diverse sub-populations within the state as well as data regarding
breast cancer risk for diverse immigrant populations may help prioritize
cultural/language capacity efforts.
Legislative Issues in Target Communities

Komen Connecticut is a member of the Connecticut Cancer Partnership (CCP). CCP is
funded by the Center for Disease Control and is responsible for coordinating a
statewide comprehensive approach to cancer prevention and control through the
development, implementation, and evaluation of a comprehensive cancer control plan
for Connecticut. Anne Morris, Executive Director of Komen Connecticut, is a member of
the Data, Surveillance and Evaluation Committee and the Early Detection Committee.
Public Policy Perspectives

Public policies and programs most relevant to providing access to breast cancer
education, screening and treatment include federal and state breast and cervical cancer
early detection programs, public and private health insurance rates and grants such as
those made by Komen Connecticut. An overview of some of the public policy issues
affecting breast health follow.
1. The Breast and Cervical Cancer Early Detection Program: The Centers for Disease
Control and Prevention established the National Breast and Cervical Cancer Early
Detection Program (NBCCEDP) in 1995 by distributing funds through state cooperative
agreements in order to cover screening and diagnostic services for medically
underserved, low-income (at or below 200% of federal poverty level) women.
Connecticut receives approximately $1.3 million per year for this program from CDC
with additional funds provided by the Governor’s budget as follows:
Table 6: CBCCEDP Funding

State Fiscal State National (CDC) Total CBCCEDP
Year Budget Funds Funds
2010-2011 $2,400,000 $1,300,000 $3,700,000
2009-2010 $2,400,000 $1,200,000 $3,600,000
2008-2009 $2,400,000 $1,300,000 $3,700,000
It should be noted that there is a 10% cut the program in the Governor’s Budget for FY
2011-12 and 2012-13. The budget implementer states that the Federal Health Care
Program will provide these services.
The Connecticut Breast and Cervical Cancer Early Detection Program (CBCCEDP) is
housed within the state Department of Public Health. There are 15 CBCCEDP sites
throughout the state that provide office visits, screening and diagnostic mammograms,
breast biopsies, breast ultrasounds, fine needle aspirations, clinical breast exams and
surgical consultations. To qualify, women must be at or below 200% of the federal
poverty level and have either no health insurance, health insurance that excludes
mammography or have a high insurance deductible ($1,000 or more). Figure 7 depicts
the location of designated providers for Connecticut’s BCCEDP.
Figure 7: CBCCEDP Providers
Nationally, only 15% of eligible women present for care under the NBCCEDP.21
Connecticut calculations, based on Census and CDC estimates of the eligible
population, suggest that 10-48% of the state’s eligible women are participating in the
CBCCEDP on an annual basis. The magnitude of this range is determined in large part
by the variability in estimates for uninsured women, 40-64 years old in the state which
range from 19,311 to 91,615. However, on average, CBCCEDP screened 9200 women
between 2004 and 2010, detecting 31 invasive breast cancers, approximately 1% of
breast cancers recorded in the state on a given year.
Table 7: Breast Cancer Screening Results

Breast Cancer Screening Results and Outcomes
Five-Year Summary, 7/2004 to 6/2009
Connecticut
Mammograms provided 17,749
Abnormal mammograms* 2,376
Percentage of abnormal mammograms 13.4
Age-adjusted percentage** 13.7
Breast cancers detected*** 137
Rate of breast cancers detected per 1,000 mammograms 7.7
Age-adjusted rate per 1,000 mammograms** 8.2
* Abnormals include mammogram results of: suspicious abnormality, highly suggestive of malignancy,
and assessment incomplete (further imaging studies or film comparisons required).
** Adjusted to the age distribution of NBCCEDP participants 40 years of age and older having
mammograms performed in calendar year 2000.
*** Breast cancers include invasive breast cancer, ductal carcinoma in situ (DCIS), and other in situ
excluding lobular carcinoma in situ (LCIS).
Table includes only NBCCEDP-funded mammograms provided to women age 40 and older. An additional
26 women, not included above, were diagnosed with CIS (other), DCIS, or invasive breast cancer through
the NBCCEDP following a mammogram funded through another source.
In 2001, Connecticut passed legislation which expanded the CBCCEDP to include

breast and cervical cancer treatment. Treatment of precancerous conditions and/or
cancer is covered by allowing eligible women to qualify for emergency Medicaid if they
are screened by a program site and have no means of payment for treatment services.
However, Connecticut is currently an Option 1 state, which is the most restrictive

category in terms of how states regard women’s eligibility for emergency Medicaid-
covered breast cancer treatment. States that are Option 1 consider women eligible for
Medicaid treatment only if their clinical services were provided all or in part by the
state’s NBCCEDP-funded program. What this means is that women who are
diagnosed with breast cancer are considered eligible for Medicaid Treatment only if they
were screened at one of the CBCCEDP sites. If they were screened and diagnosed
elsewhere (e.g. by a free mammogram provided by a Komen funded grant), they are not
eligible for Medicaid Treatment. Currently, it is estimated that 300 women per year are
not eligible simply because of where they were screened.
As a partner with providers of both CBCCEDP and non-CBCCEDP screening services

throughout the state, Komen Connecticut has actively worked with the legislature to
have legislation introduced such that Connecticut becomes an Option 3 state. This will
continue to be a top policy priority for the Affiliate. Option 3 states are the least
restrictive and allow eligible women to qualify for Medicaid-funded breast cancer
treatment if they are screened by any provider.
3. In 2009, Komen Connecticut partnered with Are You Dense, Inc. to have legislation
introduced that would require Health Care Providers to inform women if their
mammograms showed that their breast tissue density was greater than 50%. Many
women have relied solely on mammography for their breast screenings and in women
with breast tissue density greater than 50%, there is a 40% chance that a breast cancer
will not be detected. The legislation passed and Connecticut is now the only state with
this requirement. Women with dense breast tissue are also eligible for an ultrasound
which can detect tumors in or around dense breast tissue that mammograms miss.
4. There are an estimated 125,248 uninsured women in the state according to the Centers
for Disease Control and Prevention. For those with private health insurance, average
annual premiums in the state are significantly higher than the national average.
Individuals and households in Connecticut pay a larger percentage of their incomes for
health insurance. In terms of breast health benefits, state law requires insurers to
provide breast cancer screening as well as cover reconstructive surgery if mastectomy
is covered.22 State law also mandates a 48 hour inpatient recovery period after
mastectomy. Other state laws related to breast health or breast cancer include:
 An act that provides coverage for participation in cancer clinical trials including
treatment at an out-of-network facility if it is unavailable at an in-network facility and
the clinical trial sponsors are not paying for it;
 A mandate that insurers cover baseline mammograms for women 35 to 39 and one
every year for women 40 and older. Additional coverage must be provided for a
comprehensive ultrasound screening of a woman's entire breast(s) if a mammogram
shows heterogeneous or dense breast tissue based on BI-RADS or she is at
increased breast cancer risk because of family history, her prior history, genetic
testing, or other indications determined by her physician or advanced-practice nurse.
Coverage is subject to any policy provisions applicable to other covered services;
and
 A mandate that insurers cover cancer treatments including outpatient chemotherapy,
reconstructive surgery, non-dental prosthesis, surgical removal of breasts due to
tumors, and a wig if prescribed by a licensed oncologist for a patient suffering hair
loss due to chemotherapy.
Health Systems Analysis, Findings & Conclusions

As anticipated, most breast cancer related services are based at hospitals, clinics,
cancer centers or clinical service providers. Community-based organizations have an
interest in screening promotion education; however, they often lack the capacity to
make a significant difference. Improved partnerships with entities like faith-based
institutions and small businesses might help to improve breast cancer awareness
among residents who do not have regular care providers or who do not often utilize
health facilities.
Evidence-based outreach programs have become more prevalent in recent years.

Komen Connecticut and its grantees believe that these programs are helping to improve
breast health for all Connecticut women.
For its size and population, Connecticut possesses a wide variety of breast health
resources. In addition to a nationally designated comprehensive cancer center and a
nationally designated community cancer center, there are several hospital-based cancer
centers, screening services in health facilities where women are likely to present for
other services such as community health centers, and population-specific, locally-
initiated support groups. Programs and services are concentrated in two of the state’s
largest cities and in some of the well-resourced suburban towns. Many agencies
appear to provide breast health education/awareness, screening services and treatment
support services i.e. counseling. Diagnostic follow up, non-medical treatment support
i.e. financial, transportation, etc. and financial assistance for treatment seem limited
despite the presence of federal and state funds to provide treatment for those
diagnosed through the CBCCEDP.
Komen Connecticut believes that early diagnosis and quality treatment are likely to have
beneficial impact on breast cancer mortality in the state. Programs and services appear
to be sufficient for the urban core areas of Hartford and New Haven and sparser in
Bridgeport. Further in the urban centers and peripheral areas, many providers continue
to report difficulty reaching certain populations, specifically: working poor/low-income
women of all races/ethnicities, Hispanic/Latina women, African American women, the
elderly, those with a diverse array of disabilities and those with language barriers. The
Community Profile team decided to use the community data collection process to gather
more information about: 1) provider/health care system practices for screening, referral
and diagnostic follow-up, 2) language barriers in outreach and the provision of services,
3) whether or not high-need zip codes were being served by providers, 4) barriers and
opportunities for improving awareness and screening for women throughout the state as
well as what women and providers might need in order to contribute to the national
movement to end breast cancer. Selected findings from the exploratory data follow.
BREAST CANCER PERSPECTIVES IN THE TARGET
………………………………………………………………………………………………………
Methodology
In addition to analyzing available state data, the Komen Connecticut collected

exploratory community data from several sources in order to ensure that these data
were reflective of recent and current experiences among those diagnosed with breast
cancer and the state’s diversity of breast health providers. This section of the report
details the exploratory data process conducted by Komen Connecticut. The Community
Profile Team tasked with collecting exploratory data decided to supplement existing
data with data from two additional data sources: a community provider survey and
interviews with service providers and women diagnosed with late stage (Stage 3 and
Stage 4) breast cancers. Below one will find summaries of both the quantitative findings
from the survey and the qualitative data collected in interviews. Table 9 summarizes
the data collection sources and methodology.
Table 9: Exploratory Data Sources

Informants Data Sources # included in Timeframe
analyses
Clinical and non-clinical
35-item, self-administered, 2/14/2011-
providers of breast health 29
electronic survey 4/8/2011
services and care
Social Workers, Case
Managers and other non- Structured interviews 3/14/2011-
12
physician providers of breast (15 items) 4/20/2011
health services and care
Women diagnosed with late
Structured interviews 3/14/2011-
stage (Stage III or Stage IV) 4
(18 items) 4/20/2011
breast cancers
Case studies or examples Oral & written case
9 3/1/2011-4/8/2011
provided by clinical providers narratives
All exploratory data were analyzed to uncover common themes. Such themes may
highlight potential program opportunities as well as describe potential barriers and
roadblocks to reducing cancer mortality in Connecticut. These data also provide
insights about elements of service delivery that could use additional refinement in order
to reach and benefit more women.
Quantitative Data Sources
Community Provider Survey

Intended primarily for electronic administration via Survey Monkey, the community
provider survey instrument included questions to assess: demographic and descriptive
provider information; breast cancer education, screening, treatment and referral
practices; providers’ barriers to screening; perceptions of women’s barriers to screening
and treatment; perceptions of underserved populations and programs and tactics worthy
of recognition and/or replication. Letters explaining the purpose of the survey and
providing the survey link were emailed to Komen Connecticut’s network of partners,
friends, and entities known to engage in breast cancer programs i.e. the state-funded
breast and cervical cancer early detection providers, cancer support groups, etc.
Information about the survey and a message encouraging participation was sent to 150
individuals. A link to the survey was also made available on Komen Connecticut’s
website. Twenty-nine providers, representing a range of positions and practices,
participated in the survey. Table 10 describes the characteristics of the providers and
agencies represented by survey respondents.
Table 10: Survey Respondents, Provider & Agency Profile
Provider and Agency Profile
Provider Type (n=28)
Non-clinical program or education staff 75.0%
Nurse Practitioner/Physician Assistant 10.7%
Social Worker 7.1%
Researcher/Academic 7.1%
Physician 3.6%
Provision of breast services (n=28)
Clinical breast exams 64.3%
Digital mammography screening 53.6%
Biopsy 53.6%
Follow up screening 53.6%
Ultrasound 50.0%
MRI 42.9%
Analog mammography screening 25.0%
No screening or diagnostic services 21.4%
Breast cancer treatment(s) 48.1%
Breast related health education (n=28)
Delivers/Distributes breast cancer education, information and materials 96.4%
Provides information and materials in Spanish 85.7%
Provides information and materials in languages other than English & Spanish (n=24) 29.2%
Polish, Portuguese & Vietnamese named as most common other languages
Primary Sources of continuing education (n=28)
Cancer advocacy and support organizations like Susan G. Komen for the Cure 71.4%
Professional associations 64.3%
Continuing education sessions 46.4%
Health and medical journals or articles 46.4%
Internet/Websites 46.4%
Access for uninsured and underinsured (n=27)
Agency does not screen uninsured 18.1%
Agency does not accept public insurance for screening 9.1%
Agency does not treat uninsured 13.3%
Clinical trials access (n=27)
Unaware of breast cancer clinical trials in area 44.4%
Quantitative Data Overview

Survey findings highlight aspects of the following themes: access to breast cancer care
and services, barriers to access, identifying the underserved in Connecticut and
improving programs and services. Where relevant, interview data have been used to
provide qualitative detail for some of the survey findings; likewise, fill-in the blank
responses from the survey have been compared and contrasted to interview data. As
the survey dataset contains numerous variables, data not presented in this report may
supplement Komen Connecticut’s understanding of breast cancer statewide and help
shape an appropriate action plan. The data presented here are not necessarily
representative of the status of breast cancer in the state due to both small sample sizes
and a reliance on convenience sampling.
Survey Findings
Access to Breast Cancer Care and Services

Survey data affirm the widespread presence of screening and early detection programs
throughout the state. The majority of program staff working on breast cancer, whether
social workers or case managers, reported working in settings where screening and/or
treatment services are being provided. Eighty percent of physician and nurse
respondents worked in organizations or agencies that provided screening and
diagnostic services with clinical breast exams, digital mammography and biopsy being
most commonly available services.
While access to care and services can be defined in many ways, one key component of
access to breast cancer care and services is participation in a private or public health
insurance plan. The majority of organizations represented by survey respondents
screen (81.9%) or treat (86.7%) uninsured women; and less than 10% of respondents
reported that their organization did not accept public insurance. This finding is similar to
2009 findings about access to breast care and services. However, higher proportions of
women who sought breast services were described by providers as not having the
financial resources to pay for care up to 42.7% from 23% in the 2009 community
provider survey. This perceived increase may be reflective of the providers comprising
this year’s respondents, a group of providers more likely to discuss finances and
challenges accessing services with patients/consumers. Changes in population level
access to health insurance due to changes in the economic environment may also help
account for this difference.
Finally, designed to facilitate access to care among uninsured/underinsured women

living at 200% of poverty, the state’s CBCCEDP was thought to be underutilized by
many providers. Providers believed information about this program was poorly
disseminated or poorly understood by women and generalist providers throughout the
state.
Barriers to Access
Beyond insurance, providers were asked about other barriers to optimal breast health
services in the state with an emphasis on breast cancer screening and treatment. The
majority of providers believed that social and cultural barriers (54.2%) were among the
most important barriers preventing patient-provider discussions about breast cancer
screening. The social and cultural barriers described by providers included familial
responsibilities, an inability to take off work (loss of wages), fear of knowing one’s
cancer status, lack of familiarity with screening and preventative care, and personal
issues not related to breast health. In contrast, more than forty percent (41.7%) of
providers identified “no barriers” to their discussing breast cancer screening with their
patients. Very few providers described organizational, provider-related and/or
educational barriers to breast cancer screening.
Although only 16.7% of survey respondents selected “language or communication

barriers” as barriers to care in the state, the majority of providers surveyed described
addressing language barriers as an ongoing challenge in their organization. In terms of
efforts to address language and communication barriers, more than eighty-five percent
of providers’ organizations provide information in Spanish in addition to English.
Moreover, more than one quarter (29.2%) provide information in languages other than
English and Spanish, with Polish, Portuguese and Vietnamese being described as most
used by survey respondents. The need for culturally appropriate written materials and
in-person interpretation for Spanish, Creole and Portuguese and emerging Asian
languages was expressed during the provider interviews.
Finally, although no questions were asked about genetic testing in the survey, many
providers mentioned referral to genetic testing on the basis of screening results and/or
medical histories. Screening also emerged as a factor to help improve diagnoses and
optimize treatment during the provider interviews. While the potential benefits of
genetic counseling and testing appear to be understood by a variety of providers, the
provider interviews revealed the administrative and legal complications that limit access
to genetic counseling and testing for breast cancer. While one can rationalize why
women lacking health insurance as well as those participating in public insurance plans
may lack access to genetic testing and counseling, it is probably less understood that
women with “good insurance” may also lack access to such state of the art services.
This finding may be important in terms of recent scientific evidence about interactions
between triple negative breast cancers and genetic mutations in the provision of breast
cancer treatment. Triple negative breast cancers, more common among African
American women in the U.S., have, historically not responded to treatment as well as
other breast cancers leading to higher rates of death and disabling illness. New
evidence suggest that triple negative cancers in women with BRCA mutations respond
to specific treatments better than other triple negative cancers.23 While more research is
needed, many African American women in the state are not screened for BRCA
mutations.
Identifying the Underserved In Connecticut

Underserved populations were defined in several ways by providers participating in the
survey. Komen Connecticut specifically asked providers to name population subgroups
and geographic areas of their regions that they believed were underserved.
Undocumented immigrants and the uninsured were described as those least able to
access breast cancer services and care in the state. Rural residents, documented
immigrants, minorities and the underinsured were also identified as potentially
underserved. Despite the presence of the CBCCEDP, the uninsured remain
underserved from the perspective of many providers.
While not significant in terms of numbers or percentages, it is of interest that one

provider described the organization’s data collection methods as a barrier to being able
to assess potential financial and other needs among their patients. In this case,
patients’ needs are often ascertained by the educated guesses of providers.
Improving Programs and Services

Nearly half (45%) of providers responding to questions thought that additional outreach
and educational activities would help improve the delivery of breast health services in
their service area. Moreover, twenty-five percent thought that the co-location of
services (e.g. gynecologist and mammography) or location of screening services in
community settings (mobile units, schools, libraries, etc.) would help improve the
delivery of breast health services. Twenty percent proposed making following up
screening and services more accessible in order to improve breast health service
delivery. These responses are similar to previous interview findings; however providers
interviewed really focused on improving quality and content over quantity. These
providers wanted to build on existing efforts and have more time to work with patients or
more effective ways to engender trust among patients rather than increase the number
of outreach activities conducted.
When asked about the one thing that could be done in the state to improve women’s
experiences with breast cancer diagnosis and treatment, thirty percent of providers
recommended patient navigation, nurse navigation or similar services that could
facilitate patient comprehension, decision-making, support and compliance. Other
potential investments to improve breast cancer experiences included: improved
emotional and psycho-social support, reducing disparities in the use of support services,
mandating universal breast cancer screening and treatment, and improving access to
diagnostic services for women less than 40 years old.
Qualitative Data: Ensuring Community Input in Research

The following section highlights findings from the qualitative data collection based on
interviews with both providers and women diagnosed with late stage (Stage 3 and 4)
breast cancers.
Qualitative Data Sources and Methodology
Provider Interviews
Provider interviews constitute the Community Profile’s primary qualitative data. In order
to understand and depict the context and conditions in which women’s breast screening
and care occur in the state, Komen Connecticut conducted qualitative interviews with
providers. Following the 2009 predominance of physicians and nurses in both the
provider surveys and interviews, the Community Profile Team sought to broaden the
view of women’s breast health and breast cancer needs by seeking to learn from the
experiences of social workers. Social workers were sampled from the most populous
areas of the state, based on their facilities of practice; facilities included existing Komen
Connecticut grantees as well as hospitals and cancer centers in the selected
geographic areas. Additional subjects were referred by those completing the interviews.
Twelve providers with social work, nursing and health education/outreach
responsibilities were asked about their perspectives on the state of breast cancer
education, screening and treatment in the state; the majority of these providers were
hospital-based. Some providers also provided specific case studies (narrative
descriptions of individual, clinical cases) for illustrative purposes; nine case studies were
considered in this analysis.
Late Stage Cancer Interviews

In addition to provider interviews, interviews were conducted with four women
diagnosed with Stage III or Stage IV breast cancers. Komen Connecticut is interested
in reducing the number of women diagnosed with late stage cancers and believed that
lessons from the first-hand experiences of women further help target programs and
funds to reduce late stage diagnoses in the state. Women were identified through two
methods: 1) provider referral and 2) responses to an electronic request from the
Affiliate. Four interviews were completed in time for inclusion in the Community Profile
Report.
Interviewees were diagnosed in different years and were living in various states of
survivorship (where survivorship is defined by simply being diagnosed with cancer).
Some interviewees were still in treatment, while others were presently cancer-free.
Qualitative Data Overview

Qualitative data findings have been categorized into the following themes: statewide
and regional perceptions of breast health, adapting programs and services for diverse
groups of women, three important breast cancer messages, care across stages of life
and illness, and organizational /institutional challenges. The data presented here are
not necessarily representative of all providers’ or women’s experiences with breast
health and/or breast cancer throughout the state due to both small sample sizes and a
reliance on convenience sampling. Provider data and survivor data are reviewed
separately.
Statewide & Regional Perceptions of the State of Breast Health

Connecticut bears one of the highest burdens of breast cancer diagnoses in the nation.
Interviewed providers reported perceiving significant improvement in the state’s breast
cancer screening and diagnostic efforts over the last three to five years. Many believed
that increased rates of cancer were attributable, at least in part, to improvements in
diagnostics, more generally, and early detection, in particular. Despite universal
agreement about improved breast cancer screening in the state, many also noted
unsettling correlations between later diagnoses and low socioeconomic status with one
provider stating “early detection has not yet reached many of lower socioeconomic
status.”
Secondly, many providers commented on noticeable changes in screening delays and

insurance coverage as a result of the economic recession that began in 2008.
Providers described seeing patients who: were responsible for higher insurance
deductibles (as employers changed health plans), were on the verge of losing coverage
(due to lost employment), lost insurance coverage when COBRA ran out or who had
delayed routine screening and medical visits because of uncertainties related to
insurance coverage and other financial issues.
Two providers specifically mentioned the potential contributions of the high prevalence
of triple negative breast cancer among African American women. As triple negative
breast cancers are not treated as effectively as other types of breast cancer, these
providers wondered about the potential overlap among urban areas of the state, the
state’s African American population and some proportion of breast cancer morbidity and
mortality attributable to triple negative cancers.
The final perceptual shift in breast cancer work in the state is the increased presence of
immigrant (documented and undocumented) and refugee populations who present new
and unique challenges in terms of spreading messages about cancer prevention,
screening and treatment. Providers are uncertain as to how changes in the population
will change breast cancer rates and screening behaviors. This demographic change
was noted throughout the state, but most discussed by providers in the Hartford area,
Bridgeport, Stamford and the New London area. This important feature of how
Connecticut’s demographic landscape is changing is described in more detail in the
next section.
Adapting Programs and Services for Diverse Groups of Women

When asked about their work in promoting breast health and/or providing breast cancer
care, providers almost unanimously mentioned a need for their organizations and
programs to adapt or improve in order to better meet the needs of groups of patients
deemed underserved as defined by their perceived lack of access to essential breast
health services and care (as opposed to a socioeconomic definition of underserved).
Table11 describes the various groups to which providers felt a need to respond better
as well as specifics about how this population group is impacting health status and
health care in the state or region.
Providers participating in the interviews overwhelmingly stated that improving the

utilization of screening services by Hispanic/Latina and African American women was
both a priority and a challenge. Spanish-speaking and Latina populations were
described as difficult to reach despite the fact that the majority of providers report
providing services in Spanish and hiring outreach workers to work with Hispanic/Latina
women. Providers also reported that Hispanic and African American women seemed to
present with very late stage cancers or when significant breast health issues were
tangible or obvious like a mass coming through the skin. Most providers believed that
education, socioeconomic status, childcare, transportation and other competing life
priorities prevent greater mammography use among these minority populations.
Table 11: Provider-Defined Underserved Populations

Population Subgroup Potential Relevance to Cancer Burden
African American Concentrated in certain areas of the state; access to health care, service
and insurance limited from some; higher prevalence of triple negative
cancers; lower levels of genetic testing
Hispanics/Latinas Growing demographic group within most areas of the state; diverse
subpopulations with different histories regarding the physical body,
cancer, cancer screening and health beliefs; presence of fatalistic
beliefs.
Low income women Specialized providers deemed essential to help navigate health
information and health care systems
Underinsured Less help available for those with insurance, but who can’t pay despite
insurance due to high deductibles or high co-pays; other insurance
issues surface as well like clauses that provide concerning levels of
screening and care; women in this group don’t understand that they may
get some help and may delay screening and/or treatment for cost
reasons
Uninsured Programs exist to help take care of this population; however, more
people need to understand the programs and take advantage of them.
Immigrants and Refugees Many less familiar with cancer and concepts of routine screening or
preventive care. Increasing numbers in certain areas of the state. Often
demonstrate need for more diagnostic services.
Undocumented residents Increasing numbers in certain areas of the state; many lack
understanding about health care system and are ineligible for many
government programs; finding ways to pay for care and services is often
more challenging; lots of fear of revealing their status—many only
present in crisis/illness.
While the majority of the state’s cancer incidence burden is borne by White women,
most providers reporting making significant (if not always successful) attempts to reach
racial, ethnic, and linguistic minority populations. African Americans and
Hispanics/Latinas were frequently described as target audiences for outreach efforts.
Further, increasing numbers of Asians and Muslims noted in and near the state’s major
cities were described as being relatively new audiences for providers. These
populations were described considered relatively unfamiliar with U.S. breast cancer
screening and the availability of support programs if a cancer is diagnosed. Several
providers reported an ongoing need to build trust and bridges to these newer
Connecticut populations. Anecdotal evidence also revealed specific challenges facing
the elderly, lesbians and the homeless.
Three Important Breast Cancer Messages

When thinking about the messages that needed to be conveyed to the general
population about breast cancer, three messages emerged as most important. First,
providers expressed a desire for increased and/or improved understanding of the
importance of early detection. Despite improvements in screening and diagnosis across
the state in recent years, many providers described meeting women who simply failed
to realize the importance of early detection. Some of these women, as women
diagnosed with late stage cancers, came to understand the critical importance of the
early detection of breast cancers too late. Providers believe that there may be many
misunderstandings about what a breast cancer diagnosis means today—with some
women believing that the timing of a diagnosis doesn’t matter since cancer is a “death
sentence” anyway. Providers really want women to understand that this is not true.
Early diagnosis for many breast cancers significantly improves survival and outcomes.
Secondly, providers want women to understand that when it comes to breast cancer,
“knowledge is power.” Many providers discussed encountering women who for
personal or cultural reasons simply did not want to know their cancer status. This
desire to “remain in the dark” or not know one’s status reminded one respondent of the
early days of HIV/AIDS testing. Knowing one’s cancer status can improve outcomes
and survival as stated above, but additional testing can also help doctors understand a
patient’s risk of future detection and how best to treat any cancers diagnosed.
Finally, providers wanted to spread the word to women across the state that there are
programs available to assist many different types of women, not just the uninsured or
indigent. Though providers described how finding gap funding and support for working
poor and undocumented women was difficult, these same providers thought it was
important for women to understand that screening and care should not be delayed for
fear of not qualifying for indigent care programs. All providers recounted cases where
women delayed care or treatment because they had insurance (but could not afford the
deductibles or co-pays) or were employed, and they believed they would not qualify for
“free care.”
Care and Services Across Stages of Life and Illness

One of the most commonly reported concerns about and desires for breast cancer care
in the state involved ensuring access to quality information and support throughout
one’s health care experience from routine screenings and examinations to diagnostic
services through cancer treatment, recurrence risk reduction and /or end of life care.
Moreover, patient navigation, nurse navigation and other comprehensive case
management support programs were frequently described as a potential solution.
Respondents thought that in addition to improving individuals’ and families’
comprehension of cancer risk, diagnosis and treatment options, such programs would
help reduce cancer patient stress, provide a centralized source of support and
information, potentially help diagnosed women get into treatment quicker, and help
provide seamless care by coordinating disparate services and providers. While some
focused on ensuring continuity of care across various stages of cancer; others
emphasized the need for improved coordination and communication between different
provider types and facilities e.g. primary care physicians and oncologist or cancer
center and hospital; and still others wanted to find ways to make sure that women’s
cancer risks, diagnosis and treatment could be considered critically important for
women starting at ages younger than 40 through elderhood. Many respondents
believed that there has been an increase in the number of women under the age of 40
years diagnosed with breast cancers in their area. One respondent noted that the
elderly women in her area of the state are “part of a different generation; a generation of
women who may have missed the message about annual screening and many stop
breast and cervical cancer screenings as they age, especially if they become isolated or
are living alone.”
Breast Cancer Screening and Diagnosis

Considering screening on one end of the cancer spectrum, most providers interviewed
believed that clinical providers, namely, gynecologists and primary care physicians,
remain the primary way that women find out about breast cancer screening. Outreach
activities were also described as important ways to encourage women to be screened.
Outreach activities consisted of conventional health fairs and free mammography days
to health education sessions conducted in a variety of locations: churches, community-
based organizations, clinics and senior centers.
Women’s putting themselves last, lack of understanding about the risks of getting breast
cancer and fear of what will be found were the three most common reasons for women
to delay or avoid breast cancer screening or mammography according to the
interviewed providers. Providers unanimously discussed the full schedules and busy
lives of the women they see and noted that most did not include their own health and
screenings unless an illness was disruptive to their work or schedule. Competing life
priorities take precedence over breast self awareness and routine mammography for
many women, particularly mothers/caregivers who also work outside of the home and
single mothers. The majority of providers also noted the widespread misconception
that a family history of breast cancer is the most important determining factor of one’s
breast cancer risk. These providers reported women who could not believe that they
had cancer since “no one in my family had breast cancer.” One quarter of providers
interviewed described meeting women who simply preferred not to know their cancer
status whether positive or negative; these women simply wanted to live without thinking
about cancer. Insurance coverage, potential loss of pay (including lack of paid sick
leave), language barriers and transportation were also described as potential barriers to
appropriate breast cancer screening. Programs for the uninsured were simultaneously
described as having significantly improved the uninsured’s access to care in recent
years, but as also being underutilized or not sufficiently advertised. Further, though not
the focus of these interviews, many providers reported learning of strange caveats and
riders in insurance policies that seemed to threaten or endanger women’s health.
Moreover, the lack of coverage for genetic testing was noted for both the insured and
uninsured.
Finally, one potentially important consideration for women’s delay in presentation was
only mentioned by one provider, but seems worth mentioning here due to the perceived
prevalence across demographic groups as well as its purported rise over the last few
years. Based on this provider’s experience, the use of alternative remedies and
healing methods to treat perceived health problems may initially delay presentation for
routine screening and later delay initiation of treatment when cancers are diagnosed.
When cancers are diagnosed, this provider described women as placing more faith in
other healing modalities and wanting to try those before trying the treatment plans
proposed by oncologists. This provider described women returning with more advanced
cancers after trying alternative healing methods. As many cancer centers and
programs presently embrace some complementary and alternative medicine (CAM)
practices, this provider advised that those taking health histories or managing patients
have to know how to ask question about such practices respectfully and the provider
described the integrative center for health and wellness at her facility that allows
oncologists to collaborate with alternative practitioners.
Post-diagnosis and Treatment Needs

Once women are diagnosed with breast cancer, providers reported the most significant
challenges being related to personal finances, social/emotional needs and physical
wellness. Almost all providers reported fewer challenges with women starting
treatment in a timely fashion once cancer had been detected. In fact, most providers
described how women no longer “fall through the cracks” when scheduling treatment or
additional diagnostics. Moreover, according to providers, once women are sure of their
breast cancer diagnoses, they become most concerned about: losing their job or
financial footing, struggling with issues related to their body image and the apparent
side effects of treatment i.e. losing hair, and emotional issues related to mortality and
social relationships. Particularly for women in households or families dependent upon
their income, the anxiety provoked by uncertainty about how the cancer diagnosis
and/or treatment may impact one’s ability to work, earn income and pay the bills was
described as overwhelming. Similarly, many providers described young mothers’ fear
and anxieties around sharing their cancer diagnosis with their children. Others
described women who struggled with whether or not they should keep their cancer
secret from loved ones, employers, etc. Several providers described women who
worked throughout their treatment despite being physically and emotionally exhausted.
Organizational/Institutional Challenges
In terms of the institutional and organizational challenges providers face while trying to
advance breast health in the state, limited financial resources, mediocre continuity of
care and limited access to services due to cultural or geographic barriers were most
commonly described. Providers expressed an increased need to support uninsured,
undocumented and underinsured women during the recent economic recession and
lamented the lack of funding to support all of the women requiring services. Additional
funds could be used to provide more: staff including navigators, screening and
diagnostic services, treatment, genetic testing, cultural and linguistic interpreters,
counselors and psychiatric staff and logistical support. Many providers thought
additional money and/or staff could improve continuity of care if patients could rely on
one person or comprehensive and thorough coordination process that could get them
through cancer treatment and back to a primary care physician. A couple of providers
cited the how access to services and care was limited in their geographic area due to
the loss of funding for breast screening programs and the local population’s discomfort
with traveling to distant towns for services. Most providers felt comfortable with their
existing levels of language services though many noted that language remains a barrier
for some women. These providers also believed there was more need for “cultural”
(conceptual rather than language-focused) interpretation for many population groups
since their understanding of bodies, health, health care and treatment may be very
different from the U.S. medical model.
Experiences with Late Stage Cancers

Provider experiences with women diagnosed with or living with late stage (Stage 3 and
Stage 4) breast cancers can be compared to the perspectives of four women with such
diagnoses as well as three additional case studies written up by a provider. These data
provide a snapshot of what life is like for women diagnosed with late stage breast
cancers. Over the course of one’s engagement with the medical community from
diagnosis and treatment through living with breast cancer as a chronic illness to end of
life issues, women diagnosed with late stage or aggressive cancers often face a
different path than women diagnosed with Stage 1 or Stage 2 breast cancer. Though
anecdotal, the stories provided by women and providers can help the Affiliate and
others working to fight breast cancer think about addressing the unique needs of this
subpopulation of breast cancer survivors.
Women with late stage cancer diagnoses in this analysis arrive at a cancer diagnosis in
two ways: 1) during routine screening or 2) when presenting with tangible evidence (a
painful lump, changes in the skin, etc.) that something is wrong with their breast(s).
Many of the women described for this report, showed up at a physician’s office believing
something was very wrong; less than half of these women showed up after lapses in
regular medical care or insurance coverage. These accounts align with providers’
reports of both how women arrive at their initial late stage diagnosis as well as
providers’ perspectives that the common factor among late stage women is having “full
lives,” “more pressing personal issues,” and a tendency to put themselves last. These
character traits were described by almost all providers as being what women with late
stage cancer diagnoses had in common. The only other potential commonality was the
likelihood that a woman had an aggressive cancer type. Providers did not report any
other similarities among those women diagnosed with late stage breast cancers
including age group or race/ethnicity. Only women without insurance and/or lapses in
insurance reported waiting (one month to six years) before going to a provider—most of
these women relied on the state’s CBCCEDP. Consistent with providers’ reports of
seeing younger women diagnosed with cancer, three of the four women interviewed
were less than or very close to 40 years of age when they received their initial breast
cancer diagnosis. Forty years is the age at which most national guidelines suggest
women should begin annual mammography.
Once diagnosed with a late stage breast cancer, variations in women’s treatment and
care seemed to stem from characteristics of their cancers rather than access and
availability of health care. Patient experiences after breast cancer diagnosis seem to
corroborate provider claims that delays between diagnosis and treatment/illness
management are less common than in years past. Women reported fairly quick
timelines between steps once cancer was diagnosed, with the most critical delays
occurring prior to screening and diagnosis. Access to surgeons, chemotherapy,
radiation and prescriptions were described as timely and adequate by most. One
woman mentioned a little difficulty identifying a plastic surgeon for reconstruction in her
geographic area.
Depending on one’s prognosis and treatment options, the psycho-social and emotional
support needs of women diagnosed with late stage cancers are different from those of
other breast cancer survivors. While two women reported positive experiences with
cancer support groups, women and providers overwhelmingly agreed that support
groups do not work for many late stage women. Women interviewed said that the
discussions taking place and the sense of hope present for many of the women in most
cancer support groups did not reflect their lives with breast cancer or their needs; two of
the women relied heavily on internet or virtual support communities. Both women
described a need to maximize their time with their family/loved ones and how internet
support allowed them to not take time away from their families while fulfilling their
emotional support needs as needed from the comfort of their own homes. Several
women also described how the nature of one’s relationship with cancer differs if you are
expecting to treat the cancer (and rid yourself of it. . . at least for a time) versus living
with cancer as a chronic disease. When cancer will be part of one’s life for the rest of
her days (though the years may be numerous), one has a different mentality than
someone “fighting” the illness. Women with late stage cancers live with various
diagnoses, prognoses and treatment options available to them with many women
receiving infusions or treatments for the rest of their lives in order to slow the
progression of cancer and maintain a certain quality of life. In terms of needs, women
and providers believed the following things would be helpful to women facing late stage
diagnoses:
 A cancer advocate who could help present evidence and experience to women and
help women make decisions and communicate with health care providers when
overwhelmed
 Differently packaged psycho-social and emotional support—more one-on-one
counseling
 Psycho-social and emotional support and information for spouses, partners and
children
 Counseling and therapy to address feelings of guilt
 Assistance with family care and housekeeping
 Assistance with retirement planning
 Assistance with financial planning
 Assistance with estate and end of life planning
 Managing loss of income/work as condition deteriorates
 Bereavement care with families after death
Other needs mentioned—transportation and child care—were similar to the needs
described for all women diagnosed with breast cancer. However, providers thought it
was important to provide support and attention for single women without family or
significant others and younger women (close to 40 years) who were part of young
families.
Finally, it is of note that among these interviews and cases of women diagnosed with
late stage cancers, very few cultural factors were described as impacting women’s
screening or treatment decisions. One woman described her religious beliefs and the
support of church members who had also been diagnosed with breast cancer as being
critical elements of her support system. Two women described how being raised to be
“strong” impacted their initial approach to their cancer diagnosis (they should just fight it)
as well as the way they managed their lives during treatment. One of these women
described herself as “powering through” her tasks of daily living despite being
exhausted from treatment. Another said when she most needed “extra hands” she did
not realize that programs existed to help out around the house or with the kids. The
final cultural element presented relates to a Puerto Rican woman who traveled from the
island to Connecticut for breast care, but who remained uncertain about where to seek
care once she arrived due to language barriers and lack of information about accessing
the health care system.
Summary of Findings
Within this year’s exploratory data efforts, social and cultural barriers and needs
seemed most prominent. While educational and informational aspects of breast cancer
service and care figured prominently, respondents sampled for both the quantitative and
qualitative data collection projects were more likely to talk about social and cultural
aspects of breast cancer rather than their educational/informational counterparts. In the
2009 Community Profile Report, educational and informational needs and barriers were
most mentioned. As needs among providers and consumers are unlikely to change
drastically over a two year period, it makes sense that educational/informational issues
were still considered important. The shift in prominence is likely a reflection of
differences in the sample such that social workers, patient navigators, program
managers and case managers comprised a greater proportion of providers than in
previous data collection efforts. These types of providers may be more familiar with and
used to responding to patients financial, social and personal concerns. Moreover, the
salience of socioeconomic factors in light of the economic crisis as well as the attention
paid to changes in health care coverage and policies may have helped social and
cultural issues rise in prominence. In addition to the shift from education/information to
social/cultural barriers or challenges, these data also seem to shift away from
organizational and institutional issues towards challenges with the consumers/women
themselves.
Table 12 describes statewide breast health needs identified by the Community Profile
process. Opportunities exist within the state to increase and improve breast health
promotion as well as ensure that existing laws, policies and programs to support breast
health are enacted, periodically evaluated and enforced.
Table 12: Statewide Breast Health Needs
Breast Health and Breast Cancer Needs for the State of Connecticut
 Women lack knowledge about programs and services available to them as well as the
importance of screening and early detection. Women may also not realize how treatable
breast cancer may be when diagnosed early.
 Diverse types of minority populations and the uninsured/underinsured are at particular
risk for forgoing recommended breast screenings.
 Programs for the uninsured, in particular, may be insufficiently advertised or promoted.
 Perceived costs or believing that treatment cannot be afforded may be a barrier to
presenting for screening among women.
 There is a need for additional diagnostic services beyond mammography among many
populations who lack coverage or who cannot afford to pay for these services.
 Patient navigation, nurse navigation, intensive case management and/or similar
programs might be useful for helping women cope with screening amidst other life
challenges. These programs may also help women navigate diagnosis and treatment
while prioritizing their own health amidst competing priorities.
 The location of screening services in areas that minimize travel and time for women
might help improve screening and follow up as many women have limited time available
to devote to well visits due to work and family obligations.
 Agencies are often limited in their outreach due to their finances, staffing and lack of
evidence about what works.
 Financial assistance for those diagnosed with cancer to help offset a variety of costs
including treatment, home help; rent, utilities and other basic needs; and to help stabilize
households during recovery and/or transition was frequently mentioned as a need.
 Provider and provider systems can help encourage women to be screened.
 The role of women as advocates in their own health care in important. In terms of
breast health, this includes women knowing their own bodies and being able to detect
changes.
SELECTING AFFILIATE PRIORITIES
………………………………………………………………………………………………………
The Community Profile Team, with additional input from Sakinah Carter Suttiratana, a
private consultant hired to perform the qualitative research, selected the priorities to
present to the Board of Directors. The priorities were selected after reviewing the
findings in the report and comparing the findings with those of the 2009 Community
Profile Report. Priorities and areas of emphasis were changed and updated in light of
additional community and statistical data. The Komen Connecticut Board of Directors
was presented with the priorities as recommend and ranked by the Community Profile
Team and voted to approve them. The priorities and recommendations will influence the
Komen Connecticut strategic plan, FY 2012 request for proposals and other mission
and non-mission efforts.
KOMEN CONNECTICUT PRIORITIES
………………………………………………………………………………………………………
Priority 1: Strengthen and build the capacity of existing breast health providers
to identify, provide, and or refer patients to appropriate breast health and breast
cancer programs and services in cities and towns demonstrating the highest
burden of breast cancer morbidity and mortality.
Priority 2: Promote breast health awareness and the importance of screening and
early detection among women across the state.
Priority 3: Increase screening resources available to women in selected cities and

towns with an emphasis on high risk women, underserved women and selected
women under the age of 40.
AFFILIATE ACTION PLAN AND RECOMMENDATIONS
………………………………………………………………………………………………………
Priority 1: Strengthen and build the capacity of existing breast health providers
to identify, provide, and or refer patients to appropriate breast health and breast
cancer programs and services in cities and towns demonstrating the highest
burden of breast cancer morbidity and mortality.
Objective 1: Develop and issue a request for proposals to solicit provider education
grant(s) to develop and deliver a model of primary care provider breast health education
including screening recommendations, clinical breast exam instruction, information
about state resources (CBCCEDP and others), assessing patient risk and systems
management practices to improve statewide breast health.
Objective 2: Conduct targeted outreach to solicit grant applications from providers in

the following practice settings: primary care, gynecologists, medical practice directors
and administrative directors of medical groups.
Objective 3: Facilitate partnerships between agencies in an affirmative fashion, i.e.

between providers or provider agencies and non-traditional breast health organizations
like faith-based organizations, social and cultural organizations, libraries, etc. to extend
the reach and penetration of breast health messages.
Priority 2: Promote breast health awareness and the importance of screening and
early detection among women across the state.
Objective 1: Through grant efforts , improve consumer awareness about screening

programs and services in targeted communities throughout the state including
increasing awareness about free or low-cost breast health programs and services since
more women are eligible than are currently covered by existing programs
Objective 2: Through grant efforts, support specific patient empowerment interventions

focused on improving patient-provider communication about breast health/breast cancer
or improving access to useful tests (e.g. genetic) or diagnostic procedures (e.g.
ultrasound for women with dense breasts).
Objective 3: Target applicants who will submit proposals that will address outreach
myths about breast cancer in the state, namely, the overstated importance of family
history and the importance of yearly screening and education efforts consist of more
than a brochure or pamphlet
Objective 4: Target applicants who will partner with unconventional, non-clinical entities
with outreach and internal evaluation efforts that reflect demographic trends that reflect
critical underserved populations.
Priority 3: Increase screening resources available to women in selected cities and
towns with an emphasis on high risk women, underserved women and selected
women under the age of 40.
Objective 1: Through grant efforts, encourage screening of women over 40 years of age
and over in targeted cities and towns throughout the state. Through grant efforts,
encourage screening of high-risk and symptomatic women under 40 years of age in
areas of the state with high rates of morbidity and late stage breast cancer diagnoses
and support programs that provide assistance to women under 40 with age specific
barriers to screening such as child-care.
Objective 2: Continue to work to change Connecticut from an Option 1 to an Option 3

state for Medicaid-funded breast cancer treatment and to support continued state
funding for breast health services.
Objective 3: Support patient navigation and continuity of care programs that intend to
increase screening and improve the quality of follow up from diagnosis through
treatment and replicate other effective, evidence-based practices that engage
underserved populations in breast health and breast cancer screenings.
Objective 4: Facilitate access for racial and ethnic minority populations in the identified
geographic areas by supporting culturally appropriate, creative outreach strategies and
partnerships.
1
U.S. Cancer Statistics Working Group. United States Cancer Statistics: 1999–2007 Incidence
and Mortality Web-based Report. Atlanta: U.S. Department of Health and Human Services,
Centers for Disease Control and Prevention and National Cancer Institute; 2010.
2
Connecticut Tumor Registry.
3
Connecticut Department of Public Health.
4
Connecticut Tumor Registry
5
Ibid.
6
Centers for Disease Control and Prevention (CDC). Behavioral Risk Factor Surveillance
System Survey Data. Atlanta, Georgia: U.S. Department of Health and Human Services,
Centers for Disease Control and Prevention, [2008].
7
Ibid
8
Finison, Ph.D. Lorenz J., Commissioned by the Connecticut Health Foundation.
Community Health Data Scan for Connecticut. March 2007. Available at
http://www.cthealth.org
9
Noss, Amanda. (2010). Household Income for States: 2008 and 2009 American Community
Survey Briefs. U. S. Department of Commerce, Economics and Statistics Administration, U.S.
Census Bureau.
10
U.S. Census Bureau, 2010 Census
11
All figures in this table are from the U.S. Census Bureau, 2010 Census unless otherwise
indicated
12
U.S. Census Bureau, 2005-2009 American Community Survey
13
SAHIE//State and County by Demographic and Income Characteristics/2007
14
Ibid.
15
U.S Census Bureau. 2005-2009 American Community Survey
16
Ibid.
17
Ibid.
18
Ibid.
19
Ibid.
20
2003. CMMS report recommending patient navigator demonstration projects. Federal
demonstration projects were funded in 2007.
21
http://www.gao.gov/htext/d09384.html. 2009. Report GAO-09-384,”Medicaid: Source of
Screening Affects Women's Eligibility for Coverage of Breast and Cervical Cancer Treatment in
Some States”. Released June 22, 2009.
22
Kaiser Family Foundation. 2008. State Health Facts website:
http://www.statehealthfacts.org/index.jsp
23
University of Texas M. D. Anderson Cancer Center (2010, September 30). Women with triple
negative breast cancer and BRCA mutations have lower risk of recurrence, study finds.
ScienceDaily. Retrieved April 28, 2011, from http://www.sciencedaily.com
/releases/2010/09/100929191314.htm
For more information:
860.321.7806
info@komenct.org
www.KomenCT.org

CT Community Profile 2011 (Komen CT)

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2011

TABLE OF CONTENTS ........................................................................................................... 1

Sonja L. Larkin-Thorne, Chair Community Profile Team

Community Profile Team:

Lou Gonsalves PhD, Epidemiologist, Connecticut Tumor Registry

Roxanne Rotondaro, MPH, Coordinator/Practice Mgr., Connecticut Surgical Group, LLC

Figure 1. Komen Connecticut organizational chart.

Description of Service Area

Overview of Breast Cancer in Connecticut

Table 1, Breast Cancer in Connecticut Women

Table 37, Connecticut and U.S. Mammography Rates

Demographic Overview of Connecticut

Table 4, Demographic Profile of Connecticut11

Communities of Interest and Conclusions

Table 5, Target Towns

Figure 6. Selected areas of interest.

Overview of Continuum of Care and Methodology

The following clinical and non-clinical resources were mapped:

Creative outreach or cultural tailoring strategies are often employed as a means of

Overview of Community Assets

Legislative Issues in Target Communities

Public Policy Perspectives

Table 6: CBCCEDP Funding

Table 7: Breast Cancer Screening Results

In 2001, Connecticut passed legislation which expanded the CBCCEDP to include

However, Connecticut is currently an Option 1 state, which is the most restrictive

As a partner with providers of both CBCCEDP and non-CBCCEDP screening services

Health Systems Analysis, Findings & Conclusions

Evidence-based outreach programs have become more prevalent in recent years.

In addition to analyzing available state data, the Komen Connecticut collected

Table 9: Exploratory Data Sources

Quantitative Data Sources

Community Provider Survey

Quantitative Data Overview

Access to Breast Cancer Care and Services

Finally, designed to facilitate access to care among uninsured/underinsured women

Although only 16.7% of survey respondents selected “language or communication

Identifying the Underserved In Connecticut

While not significant in terms of numbers or percentages, it is of interest that one

Improving Programs and Services

Qualitative Data: Ensuring Community Input in Research

Qualitative Data Sources and Methodology

Late Stage Cancer Interviews

Qualitative Data Overview

Statewide & Regional Perceptions of the State of Breast Health

Secondly, many providers commented on noticeable changes in screening delays and

Adapting Programs and Services for Diverse Groups of Women

Providers participating in the interviews overwhelmingly stated that improving the

Table 11: Provider-Defined Underserved Populations

Three Important Breast Cancer Messages

Care and Services Across Stages of Life and Illness

Breast Cancer Screening and Diagnosis

Post-diagnosis and Treatment Needs

Experiences with Late Stage Cancers

Priority 3: Increase screening resources available to women in selected cities and

Objective 2: Conduct targeted outreach to solicit grant applications from providers in

Objective 3: Facilitate partnerships between agencies in an affirmative fashion, i.e.

Objective 1: Through grant efforts , improve consumer awareness about screening

Objective 2: Through grant efforts, support specific patient empowerment interventions

Objective 2: Continue to work to change Connecticut from an Option 1 to an Option 3

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