CT Community Profile 2011 (Komen CT)

8/3/2019 CT Community Profile 2011 (Komen CT)

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COMMUNITY PROF

OF BREAST CANC

IN CONNECTIC

EXECUTIVE SUMMA


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2011 The Connecticut Affiliate of Susan G. Komen for the Cure P a g e | 1

TABLE OF CONTENTS

TABLE OF CONTENTS ........................................................................................................... 1Disclaimer:................................................................................................................................... 2ACKNOWLEDGEMENTS ........................................................................................................ 3INTRODUCTION ........................................................................................................................ 4

Affiliate History.......................................................................................................................... 4Organizational Structure ......................................................................................................... 5Description of Service Area .................................................................................................... 5Purpose of Report .................................................................................................................... 6

BREAST CANCER IN AFFILIATE SERVICE AREA ........................................................ 7Methodology.............................................................................................................................. 7Overview of Breast Cancer in Connecticut .......................................................................... 7Demographic Overview of Connecticut ................................................................................ 8Communities of Interest and Conclusions............................................................................ 9HEALTH SYSTEMS ANALYSIS OF TARGET COMMUNITIES .................................. 15Overview of Continuum of Care and Methodology ........................................................... 15Overview of Community Assets ........................................................................................... 16Legislative Issues in Target Communities.......................................................................... 17Public Policy Perspectives .................................................................................................... 17Health Systems Analysis, Findings & Conclusions .......................................................... 21

BREAST CANCER PERSPECTIVES IN THE TARGET ................................................. 23Methodology............................................................................................................................ 23Quantitative Data Sources.................................................................................................... 23Community Provider Survey................................................................................................. 23Quantitative Data Overview .................................................................................................. 25Survey Findings ...................................................................................................................... 26

Access to Breast Cancer Care and Services ................................................................ 26Barriers to Access .............................................................................................................. 26Identifying the Underserved In Connecticut ................................................................... 27Improving Programs and Services .................................................................................. 28

Qualitative Data: Ensuring Community Input in Research ............................................. 28Qualitative Data Sources and Methodology .................................................................. 28Qualitative Data Overview ................................................................................................ 29

Experiences with Late Stage Cancers ................................................................................ 35Summary of Findings............................................................................................................. 37

SELECTING AFFILIATE PRIORITIES ................................................................................ 39KOMEN CONNECTICUT PRIORITIES............................................................................... 40AFFILIATE ACTION PLAN AND RECOMMENDATIONS ........................................... 41


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Disclaimer:

The information in this Community Profile Report is based on the work of TheConnecticut Affiliate of Susan G. Komen for the Cure in conjunction with keycommunity partners. The findings of the report are based on a needs assessmentpublic health model but are not necessarily scientific and are provided "as is" for generalinformation only and without warranties of any kind. Susan G. Komen for the Cure andits Affiliates do not recommend, endorse or make any warranties or representations ofany kind with regard to the accuracy, completeness, timeliness, quality, efficacy or non-infringement of any of the programs, projects, materials, products or other informationincluded or the companies or organizations referred to in the report.


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ACKNOWLEDGEMENTS

Volunteers are the core foundation of any organization, its activities, communityinvolvement and success. The individuals who volunteered to join the Komen

Connecticut Community Profile Team demonstrated this core and we appreciate theircommitment. Each volunteer brought a level of knowledge and expertise with breastcancer, breast center and data management, community hospitals and medical servicesavailable throughout the state.

A special thank you to their employers, Saint Francis and Hartford Hospitals, State ofConnecticut, and Connecticut Surgical Group for allowing each to commit the hoursrequired to tell this story. We would also like to express our appreciation to MarianEvans, M.D., CRA, Associate Professor, School of Health and Human Services for hercontribution 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. Theknowledge gained allowed us to understand the challenges faced by women andfamilies impacted by breast cancer. The recommendations in this report are a result oftheir story; it is our hope they will have a positive impact on breast education, screeningand treatment in Connecticut.

Sonja L. Larkin-Thorne, Chair Community Profile TeamMember, Komen Connecticut Board of Directors2011-2012 Consumer Representative, National Association of InsuranceCommissioners

Community Profile Team:

Lou Gonsalves PhD, Epidemiologist, Connecticut Tumor Registry

Kristen Noelle Hatcher, JD, Director Grants & Mission Initiatives, Susan G. Komen forthe Cure Connecticut

Sally Lerman, MS, CHES, Health Promotion Coordinator, Saint Francis Hospital andMedical 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


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INTRODUCTION

Affiliate History

Nancy G. Brinker promised her dying sister, Susan G. Komen, that she would doeverything in her power to end breast cancer forever. In 1982 that promise becameSusan G. Komen for the Cure. Today, Komen for the Cure is the worlds largestnetwork of breast cancer survivors and advocates.

In 1994, the first Komen Connecticut Race for the Curewas 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 worksthroughout the State of Connecticut to fulfill the promise to save lives and end breastcancer forever by empowering people, ensuring quality care for all and energizingscience to find the cures. This mission is based on the promise made by Nancy to hersister when little was known about the disease.

Komen Connecticuts work focuses on educating the community on breast health andbreast cancer, working to ensure that screening and treatment are available to all

residents of Connecticut and raising funds to support breast cancer research. Since itsinception, Komen for the Cure has invested over $21 million in Connecticut in these fourareas of focus education, screening, treatment and research.


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Organizational Structure

Komen Connecticut is based in Farmington, Connecticut. The organizationalcomponents of Komen Connecticut are the Board of Directors, the ExecutiveCommittee, 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 2part time, to fulfill the Komen promise locally: to save lives and end breast cancerforever. Figure 1 depicts Komen Connecticuts organizational structure.

Figure 1. Komen Connecticut organizational chart.

Description of Service AreaThe Connecticut Affiliate serves the entire State of Connecticut from Greenwich in thesouthwest, Salisbury in the northwest, Thompson in the northeast and Stonington in thesoutheast. Connecticut is bordered by New York to the West, Massachusetts to theNorth, Rhode Island to the East and the Long Island Sound to the South. Figure 2depicts Affiliate funding for the past eight years throughout the state.


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Figure 2. Affiliate grantees, 2004-present.

Purpose of Report

To meet our promise to save lives and end breast cancer forever, Komen Connecticutrelies on information obtained through the Community Profile process to establishpriorities and guide our work in Connecticut. The purpose of the Community Profile is tofurther illuminate areas of need for breast health promotion and breast cancereducation, screening, treatment and support within the State of Connecticut. TheConnecticut Affiliate has granted over $10 million to community based breast healthorganizations since its inception in 1999. This report intends to describe the variedbreast health needs in the state as well as potential areas in which KomenConnecticuts programs and funding might help advance the networks promise ofending breast cancer. Potential opportunities and areas of interest have been drawnfrom analyses of breast cancer statistics, policies and programs in the state that may

impact breast health and exploratory, primary data collection among providers andbreast cancer survivors in the state. After synthesizing data from various sources, thisreport presents data-driven priority areas from which the Affiliate intends to developfunding decisions for the years 2012-2014. This report provides abridged analyses ofthe data collected and reviewed by the Affiliateadditional information on the data canbe obtained by contacting the Affiliate office at 860-321-7806.


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BREAST CANC ER IN AFFILIATE SERVICE AREA

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 womenwhere the impact will be greatest.

Statistics reviewed for this Community Profile include data derived specifically forKomen Connecticut by the State of Connecticut Department of Public Health.Additional data were obtained from the Centers for Disease Control and Prevention andthe U.S. Census Bureau. Statistics were reviewed for their relevance to the currentbreast health situation in Connecticut as well as their applicability for targetinggeographic areas smaller than the state.

Overview of Breast Cancer in Connecticut

The State of Connecticut has the second highest incidence of female breast cancer inthe nation1 with 2,920 new breast cancer cases diagnosed in 2008 2. Connecticut ranks35th in the nation with respect to breast cancer mortality3, 490 women died from breastcancer in 20084. Table 1 summarizes key breast cancer statistics for women inConnecticut by race and Hispanic ethnicity.

Table 1, Breast Cancer in Connecticut Women

Breast Cancer EstimateRace/

EthnicityConnecticut

aUnited States

b

Age-adjusted incidence rate per 100,000women (95% confidence limits)

2006-2008 2007

All races/

ethnicities136.1 (133.2-139.1) 120.4 (119.8-120.9)

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 100,000women (95% confidence limits)

2005-2007 2007

All races/ethnicities

23.0 (22.0-24.3) 22.8 (22.6-23.1)

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/ethnicities 4.5% -

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:

aConnecticut Tumor Registry;

bUnited States Cancer Statistics 2007


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The incidence of breast cancer has varied over the past 40 years, with rates increasingsteadily, and then leveling off over the past few years. Breast cancer mortality has seena 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 peoplelive 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 sameage and sex in the general US population (i.e., the rate has been adjusted for mortalityin the general population). The 5-year relative survival for Connecticut womendiagnosed with breast cancer is over 90%; however, the survival rates varies greatlywith the stage of the cancer at diagnosis (Table 2).

Table 25, Five Year Relative Survival Rate for Connecticut Women Diagnosed 1999-2003 and

Followed Through 2008

Stage at diagnosis5 year relative

survival %95% lower

confidence limit95% upper

confidence limitLocalized 99.5 97.4 99.9Regional 87.2 85.7 88.6

Distant 25.4 21.8 29.1All stages 90.9 90.0 91.6

While two-year mammography rates suggest that Connecticut may be reaching manyfor early screening and detection, concerns remain about reducing mortality and illnessseverity among several populations. Data from the Behavioral Risk Factor SurveillanceSystem indicate that 84.1% of Connecticut women aged 40+ years have had amammogram in the last 2 years compared with national averages of 76% for women40+ 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 olderwho have had mammogram in the lasttwo years (BRFSS, 2008)

84.1% 76.0%

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 ConnecticutHealth Foundation, demonstrates that African American women in the urban centersand Hispanic women in manufacturing centers are among the least likely in the state touse mammography screening.8

Demographic Overview of Connecticut

Connecticut is the second smallest state and within it has extremes of wealth andpoverty; it has the largest disparity between poverty and wealth of all fifty states, second


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only to New York.9 There are approximately 3.5 million people residing in Connecticutbased on the 2010 census10. Table 4, presents a demographic profile of the state.

Table 4, Demographic Profile of Connecticut11Demographic Description Measure

Total Population 3,574,097Median Household Income $67,721Individuals 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 ofinsurance coverage, it is estimated based on the 2007 data that there are 142, 975uninsured women in the state.13 The populations with the highest uninsured rates are inthe urban centers.14 Because Connecticut is a small geographic region with largeachievement gaps in education, health, and income, geographic mapping is essential tothe Affiliates 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 whereinterventions will likely have most impact. Connecticut towns were ranked by age-adjusted mortality rate (2004-2008) and those towns with rates higher than the staterate, and where there were 4 or more deaths per year were selected. (Rates based onfew 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 thanthe proportion for the entire state, and where 20 or more late stage tumors werediagnosed, were selected. This method identified a total of 39 Connecticut towns (Table5).

Table 5, Target TownsBloomfield Hamden Norwalk WaterburyBranford Hartford Norwich West HartfordBridgeport Manchester Shelton West HavenCheshire Meriden South Windsor WestportDanbury Middletown Stamford WethersfieldEast Hartford Milford Stonington WindsorEast Haven Naugatuck StratfordEnfield New Britain Torrington


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2011 The Connecticut Affiliate of Susan G. Komen for the Cure P a g e | 1 0

Farmington New Haven TrumbullGlastonbury New Milford VernonGroton North Haven Wallingford

The towns targeted vary widely with regards to socioeconomic factors. Connecticuts

capital city, Hartford, is one of our target towns. It has a poverty level of 31.6 percentwhich is more than double the national average of 13.5 percent15. However, alsoincluded 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 thanEnglish at home at levels higher than the national average, including, Hartford,Bridgeport, Stamford, Danbury, Norwalk17. The people in the target towns aregraduating high school at levels above the national average in all but the followingtowns- listed in order from the lowest to highest percentage: Hartford, Bridgeport, NewBritain, Waterbury, New Haven, Meriden, Danbury, and East Hartford.18 The AfricanAmerican and Hispanic communities in the state are concentrated in the states urbancenters and this is reflected in the census data for our target communities, with theoccasional pocket of diversity in towns such as Bloomfield19.

While not used in the town selection process, the age-adjusted incidence rates in thetarget towns were also examined. The maps below show the age-adjusted mortality andincidence rates and the proportions of late stage diagnoses in the selected towns(Figures 3-5).


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Figure 3. Map of mortality.


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Figure 4. Map of incidence.


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Figure 5. Map of late stage.


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Figure 6 shows a composite map highlighting the towns with age adjusted mortalityrates higher than the state rate and percentages of late stage diagnoses higher than thestate average. Towns that have incidence rates that are higher than the state incidencerate are indicated with a star.

Figure 6. Selected areas of interest.


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HEALTH SYSTEMS ANALYSIS OF TARGET COMMUNITIES

Overview of Continuum of Care and Methodology

In 2009, the Affiliate completed a comprehensive analysis of the programs and servicesthroughout the state that would be an asset to womens breast health, the Affiliate reliedon three sources of data. First, the Affiliate compiled listings of all the breast cancerorganizations and organizations providing breast cancer screening, early detectionand/or treatment support service. Second, an Affiliate intern developed a random list ofassets 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 listsindependently compiled by MATRIX, a local public health consultant firm.

The following clinical and non-clinical resources were mapped:

1. Hospitals2. Cancer Centers3. Community Health Centers (with comprehensive cancer care services)4. Breast health and cancer organizations5. Official Connecticut Breast and Cervical Cancer Early Detection Program

(CBCCEDP) sites6. Local Health Departments (with breast cancer prevention programs)7. Support networks or support group organizations; and8. The Connecticut Affiliates grantees (2004-present)

Assets were identified based on the current availability of programs and services mostrelevant to breast health such as screening, diagnostic services, treatment, participationin 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 CommunityProfile. Basic analysis of the asset map included considering the location of breasthealth assets in relation to disease burden and in relation to the states population.Areas with surpluses and deficits of assets were considered. A second level ofanalyses considered the location of assets and disease burden relative to the Affiliatesrecent funding (last five years).

All of the identified assets were contacted and asked to participate in the providersurvey and/or provider interviews that comprise the exploratory data process of theCommunity Profile. Findings from this Affiliate survey of clinical and non-clinicalproviders as well as interviews with community providers also contributed to theidentification of additional assets and gaps in services for the target towns in the state.


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Promising practices that have gained interest in the state are patient navigationprograms as well as creative outreach approaches that emphasize the tailoring ofprograms to better suit the needs of sub-populations. Patient navigation refers toguidance and support provided by trained personnel to persons with abnormal cancerscreening 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. Thesenavigators become a patients point-persons for managing their illness within the healthcare systems that they will use for care. Four hospitals or health care systems currentlyoffer patient navigation type programs in Bridgeport, Farmington, Hartford and NewHaven. While national (NCI and NIH-sponsored) evaluations are ongoing, anecdotalevidence suggests that these programs help women better cope with their cancerdiagnoses and better navigate the health care systems they encounter and therefore,improve their health screening and follow-up behaviors in the short term, and theirhealth outcomes in the long term.20 Evaluation studies of patient navigation programs invarious 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 ofreaching hard to reach and/or minority populations. These unconventional strategiesfor improving health screening and health outcomes primarily consist of bringingacceptable health promotion messages and interventions to people where they alreadylive, 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 theintervention so that they are more acceptable to the population of interest e.g. usingdifferent presentation formats. Some community health worker programs may bedescribed as tailored outreach strategies.

Overview of Community Assets

The breast health assets are concentrated in and around population centers of thestate. The New Haven and Hartford areas boast particularly rich sets of assets as theseareas host universities with medical schools as well as multiple cancer centers. NewHaven has the states only NCI-designated Comprehensive Cancer Center at YaleUniversity; and Hartford Hospital has the states only NCI-designated CommunityCancer Center. While every county has some breast health assets, the concentrationand distribution varies across the state. For example, in Hartford County services areconcentrated in the urban center, which suggests long travel distances to accessservices as well as potential transportation issues and timing challenges for the elderly,some disabled populations and lower income, working women who have difficultyseeking services due to work and home responsibilities. Similar issues might arise forwomen in Fairfield County. Rural areas have transportation issues related to thedistance between population and services. By contrast, although Bridgeport has anearby cancer center and is the largest city in the state, the surrounding towns, likeFairfield, appear to have better access to breast health resources. While the number of


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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 andvariety of public transportation, formalized partnerships between local institutions andmajor assets such as cancer centers) characteristics should be considered in order tobest understand access issues.

The primary foci of the Komen Connecticuts grants program are: 1) to increaseawareness and educate women about breast cancer, 2) to ensure screening andtreatment is available to all residents of Connecticut, and 3) to reduce breast cancermortality rates in Connecticut by funding community-based programs. As depicted inFigure 2 earlier in the document, the Affiliates grantees reach most geographic regionsof the state

The Affiliate responded to the needs compiled in the 2009 report. The current slate ofgrantees provides targeted services to the Affiliates core populations to address breastcancer needs in the state: the uninsured, the underinsured, ethnic minorities, and low

income women. Outreach, education and screening services were the most commonlyfunded programs. The two mobile mammography programs funded as well as thenumerous patient navigation programs, diagnostic follow up and treatment supportservices all aim to increase the availability of services and better coordinate treatmentfor medically underserved women. The Affiliates past and present support of healthinterpreters for Spanish-speaking populations also aims to improve access byminimizing cultural and linguistic barriers for low-income women. Increasing diversitywithin the state may require consideration of other languages/cultures. Information onsize and placement of diverse sub-populations within the state as well as data regardingbreast cancer risk for diverse immigrant populations may help prioritizecultural/language capacity efforts.

Legislative Issues in Target Communities

Komen Connecticut is a member of the Connecticut Cancer Partnership (CCP). CCP isfunded by the Center for Disease Control and is responsible for coordinating astatewide comprehensive approach to cancer prevention and control through thedevelopment, implementation, and evaluation of a comprehensive cancer control planfor Connecticut. Anne Morris, Executive Director of Komen Connecticut, is a member ofthe 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 cancerearly detection programs, public and private health insurance rates and grants such asthose made by Komen Connecticut. An overview of some of the public policy issuesaffecting breast health follow.

1. The Breast and Cervical Cancer Early Detection Program: The Centers for DiseaseControl and Prevention established the National Breast and Cervical Cancer EarlyDetection Program (NBCCEDP) in 1995 by distributing funds through state cooperative


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agreements in order to cover screening and diagnostic services for medicallyunderserved, low-income (at or below 200% of federal poverty level) women.Connecticut receives approximately $1.3 million per year for this program from CDCwith additional funds provided by the Governors budget as follows:

Table 6: CBCCEDP FundingState FiscalYear

StateBudget

National (CDC)Funds

Total CBCCEDPFunds

2010-2011 $2,400,000 $1,300,000 $3,700,0002009-2010 $2,400,000 $1,200,000 $3,600,0002008-2009 $2,400,000 $1,300,000 $3,700,000

It should be noted that there is a 10% cut the program in the Governors Budget for FY2011-12 and 2012-13. The budget implementer states that the Federal Health CareProgram will provide these services.

The Connecticut Breast and Cervical Cancer Early Detection Program (CBCCEDP) ishoused within the state Department of Public Health. There are 15 CBCCEDP sitesthroughout the state that provide office visits, screening and diagnostic mammograms,breast biopsies, breast ultrasounds, fine needle aspirations, clinical breast exams andsurgical consultations. To qualify, women must be at or below 200% of the federalpoverty level and have either no health insurance, health insurance that excludesmammography or have a high insurance deductible ($1,000 or more). Figure 7 depictsthe location of designated providers for Connecticuts BCCEDP.


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Figure 7: CBCCEDP Providers

Nationally, only 15% of eligible women present for care under the NBCCEDP.21Connecticut calculations, based on Census and CDC estimates of the eligiblepopulation, suggest that 10-48% of the states eligible women are participating in theCBCCEDP on an annual basis. The magnitude of this range is determined in large partby the variability in estimates for uninsured women, 40-64 years old in the state whichrange from 19,311 to 91,615. However, on average, CBCCEDP screened 9200 womenbetween 2004 and 2010, detecting 31 invasive breast cancers, approximately 1% ofbreast cancers recorded in the state on a given year.

Table 7: Breast Cancer Screening Results

Breast Cancer Screening Results and OutcomesFive-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


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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 havingmammograms performed in calendar year 2000.*** Breast cancers include invasive breast cancer, ductal carcinoma in situ (DCIS), and other in situexcluding lobular carcinoma in situ (LCIS).Table includes only NBCCEDP-funded mammograms provided to women age 40 and older. An additional26 women, not included above, were diagnosed with CIS (other), DCIS, or invasive breast cancer throughthe NBCCEDP following a mammogram funded through another source.

In 2001, Connecticut passed legislation which expanded the CBCCEDP to includebreast and cervical cancer treatment. Treatment of precancerous conditions and/orcancer is covered by allowing eligible women to qualify for emergency Medicaid if theyare 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 restrictivecategory in terms of how states regard womens eligibility for emergency Medicaid-covered breast cancer treatment. States that are Option 1 consider women eligible forMedicaid treatment only if their clinical services were provided all or in part by thestates NBCCEDP-funded program. What this means is that women who arediagnosed with breast cancer are considered eligible for Medicaid Treatment only if theywere screened at one of the CBCCEDP sites. If they were screened and diagnosedelsewhere (e.g. by a free mammogram provided by a Komen funded grant), they are noteligible for Medicaid Treatment. Currently, it is estimated that 300 women per year arenot eligible simply because of where they were screened.

As a partner with providers of both CBCCEDP and non-CBCCEDP screening servicesthroughout the state, Komen Connecticut has actively worked with the legislature tohave legislation introduced such that Connecticut becomes an Option 3 state. This willcontinue to be a top policy priority for the Affiliate. Option 3 states are the leastrestrictive and allow eligible women to qualify for Medicaid-funded breast cancertreatment if they are screened by any provider.

3. In 2009, Komen Connecticut partnered with Are You Dense, Inc. to have legislationintroduced that would require Health Care Providers to inform women if theirmammograms showed that their breast tissue density was greater than 50%. Many

women have relied solely on mammography for their breast screenings and in womenwith breast tissue density greater than 50%, there is a 40% chance that a breast cancerwill not be detected. The legislation passed and Connecticut is now the only state withthis requirement. Women with dense breast tissue are also eligible for an ultrasoundwhich can detect tumors in or around dense breast tissue that mammograms miss.


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4. There are an estimated 125,248 uninsured women in the state according to the Centersfor Disease Control and Prevention. For those with private health insurance, averageannual 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 toprovide breast cancer screening as well as cover reconstructive surgery if mastectomyis covered.22 State law also mandates a 48 hour inpatient recovery period aftermastectomy. Other state laws related to breast health or breast cancer include:

An act that provides coverage for participation in cancer clinical trials includingtreatment at an out-of-network facility if it is unavailable at an in-network facility andthe clinical trial sponsors are not paying for it;

A mandate that insurers cover baseline mammograms for women 35 to 39 and oneevery year for women 40 and older. Additional coverage must be provided for acomprehensive 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 atincreased breast cancer risk because of family history, her prior history, genetictesting, 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 totumors, and a wig if prescribed by a licensed oncologist for a patient suffering hairloss 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 aninterest in screening promotion education; however, they often lack the capacity tomake a significant difference. Improved partnerships with entities like faith-basedinstitutions and small businesses might help to improve breast cancer awarenessamong residents who do not have regular care providers or who do not often utilizehealth 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 healthresources. In addition to a nationally designated comprehensive cancer center and anationally designated community cancer center, there are several hospital-based cancercenters, screening services in health facilities where women are likely to present forother services such as community health centers, and population-specific, locally-initiated support groups. Programs and services are concentrated in two of the states


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largest cities and in some of the well-resourced suburban towns. Many agenciesappear to provide breast health education/awareness, screening services and treatmentsupport services i.e. counseling. Diagnostic follow up, non-medical treatment supporti.e. financial, transportation, etc. and financial assistance for treatment seem limiteddespite 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 havebeneficial impact on breast cancer mortality in the state. Programs and services appearto be sufficient for the urban core areas of Hartford and New Haven and sparser inBridgeport. Further in the urban centers and peripheral areas, many providers continueto report difficulty reaching certain populations, specifically: working poor/low-incomewomen of all races/ethnicities, Hispanic/Latina women, African American women, theelderly, those with a diverse array of disabilities and those with language barriers. TheCommunity Profile team decided to use the community data collection process to gathermore 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 andopportunities for improving awareness and screening for women throughout the state aswell as what women and providers might need in order to contribute to the nationalmovement to end breast cancer. Selected findings from the exploratory data follow.


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BREAST CANCER PERSPECTIVES IN THE TARGET

Methodology

In addition to analyzing available state data, the Komen Connecticut collectedexploratory community data from several sources in order to ensure that these datawere reflective of recent and current experiences among those diagnosed with breastcancer and the states diversity of breast health providers. This section of the reportdetails the exploratory data process conducted by Komen Connecticut. The CommunityProfile Team tasked with collecting exploratory data decided to supplement existingdata with data from two additional data sources: a community provider survey andinterviews with service providers and women diagnosed with late stage (Stage 3 andStage 4) breast cancers. Below one will find summaries of both the quantitative findingsfrom the survey and the qualitative data collected in interviews. Table 9 summarizes

the data collection sources and methodology.

Table 9: Exploratory Data SourcesInformants Data Sources # included in

analysesTimeframe

Clinical and non-clinicalproviders of breast healthservices and care

35-item, self-administered,electronic survey

292/14/2011-4/8/2011

Social Workers, CaseManagers and other non-physician providers of breasthealth services and care

Structured interviews(15 items)

123/14/2011-4/20/2011

Women diagnosed with late

stage (Stage III or Stage IV)breast cancers

Structured interviews(18 items) 4 3/14/2011-4/20/2011

Case studies or examplesprovided by clinical providers

Oral & written casenarratives

9 3/1/2011-4/8/2011

All exploratory data were analyzed to uncover common themes. Such themes mayhighlight potential program opportunities as well as describe potential barriers androadblocks to reducing cancer mortality in Connecticut. These data also provideinsights about elements of service delivery that could use additional refinement in orderto reach and benefit more women.

Quantitative Data Sources

Community Provider Survey

Intended primarily for electronic administration via Survey Monkey, the communityprovider survey instrument included questions to assess: demographic and descriptiveprovider information; breast cancer education, screening, treatment and referralpractices; providers barriers to screening; perceptions of womens barriers to screening


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and treatment; perceptions of underserved populations and programs and tactics worthyof recognition and/or replication. Letters explaining the purpose of the survey andproviding the survey link were emailed to Komen Connecticuts network of partners,friends, and entities known to engage in breast cancer programs i.e. the state-fundedbreast and cervical cancer early detection providers, cancer support groups, etc.

Information about the survey and a message encouraging participation was sent to 150individuals. A link to the survey was also made available on Komen Connecticutswebsite. Twenty-nine providers, representing a range of positions and practices,participated in the survey. Table 10 describes the characteristics of the providers andagencies represented by survey respondents.


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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 careand services, barriers to access, identifying the underserved in Connecticut andimproving programs and services. Where relevant, interview data have been used to


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provide qualitative detail for some of the survey findings; likewise, fill-in the blankresponses from the survey have been compared and contrasted to interview data. Asthe survey dataset contains numerous variables, data not presented in this report maysupplement Komen Connecticuts understanding of breast cancer statewide and helpshape 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 sizesand 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 programsthroughout the state. The majority of program staff working on breast cancer, whethersocial workers or case managers, reported working in settings where screening and/ortreatment services are being provided. Eighty percent of physician and nurse

respondents worked in organizations or agencies that provided screening anddiagnostic services with clinical breast exams, digital mammography and biopsy beingmost commonly available services.

While access to care and services can be defined in many ways, one key component ofaccess to breast cancer care and services is participation in a private or public healthinsurance plan. The majority of organizations represented by survey respondentsscreen (81.9%) or treat (86.7%) uninsured women; and less than 10% of respondentsreported that their organization did not accept public insurance. This finding is similar to2009 findings about access to breast care and services. However, higher proportions ofwomen 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 communityprovider survey. This perceived increase may be reflective of the providers comprisingthis years respondents, a group of providers more likely to discuss finances andchallenges accessing services with patients/consumers. Changes in population levelaccess to health insurance due to changes in the economic environment may also helpaccount for this difference.

Finally, designed to facilitate access to care among uninsured/underinsured womenliving at 200% of poverty, the states CBCCEDP was thought to be underutilized bymany providers. Providers believed information about this program was poorlydisseminated 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 healthservices in the state with an emphasis on breast cancer screening and treatment. Themajority of providers believed that social and cultural barriers (54.2%) were among themost important barriers preventing patient-provider discussions about breast cancer


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screening. The social and cultural barriers described by providers included familialresponsibilities, an inability to take off work (loss of wages), fear of knowing onescancer status, lack of familiarity with screening and preventative care, and personalissues not related to breast health. In contrast, more than forty percent (41.7%) ofproviders identified no barriers to their discussing breast cancer screening with their

patients. Very few providers described organizational, provider-related and/oreducational barriers to breast cancer screening.

Although only 16.7% of survey respondents selected language or communicationbarriers as barriers to care in the state, the majority of providers surveyed describedaddressing language barriers as an ongoing challenge in their organization. In terms ofefforts to address language and communication barriers, more than eighty-five percentof providers organizations provide information in Spanish in addition to English.Moreover, more than one quarter (29.2%) provide information in languages other thanEnglish and Spanish, with Polish, Portuguese and Vietnamese being described as mostused by survey respondents. The need for culturally appropriate written materials and

in-person interpretation for Spanish, Creole and Portuguese and emerging Asianlanguages was expressed during the provider interviews.

Finally, although no questions were asked about genetic testing in the survey, manyproviders mentioned referral to genetic testing on the basis of screening results and/ormedical histories. Screening also emerged as a factor to help improve diagnoses andoptimize treatment during the provider interviews. While the potential benefits ofgenetic counseling and testing appear to be understood by a variety of providers, theprovider interviews revealed the administrative and legal complications that limit accessto genetic counseling and testing for breast cancer. While one can rationalize whywomen lacking health insurance as well as those participating in public insurance plansmay lack access to genetic testing and counseling, it is probably less understood thatwomen 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 interactionsbetween triple negative breast cancers and genetic mutations in the provision of breastcancer treatment. Triple negative breast cancers, more common among AfricanAmerican women in the U.S., have, historically not responded to treatment as well asother breast cancers leading to higher rates of death and disabling illness. Newevidence suggest that triple negative cancers in women with BRCA mutations respondto specific treatments better than other triple negative cancers.23 While more research isneeded, many African American women in the state are not screened for BRCAmutations.

Identifying the Underserved In Connecticut

Underserved populations were defined in several ways by providers participating in thesurvey. Komen Connecticut specifically asked providers to name population subgroupsand geographic areas of their regions that they believed were underserved.Undocumented immigrants and the uninsured were described as those least able toaccess breast cancer services and care in the state. Rural residents, documented


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immigrants, minorities and the underinsured were also identified as potentiallyunderserved. Despite the presence of the CBCCEDP, the uninsured remainunderserved from the perspective of many providers.

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

provider described the organizations data collection methods as a barrier to being ableto 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 outreachand educational activities would help improve the delivery of breast health services intheir service area. Moreover, twenty-five percent thought that the co-location ofservices (e.g. gynecologist and mammography) or location of screening services incommunity settings (mobile units, schools, libraries, etc.) would help improve the

delivery of breast health services. Twenty percent proposed making following upscreening and services more accessible in order to improve breast health servicedelivery. These responses are similar to previous interview findings; however providersinterviewed really focused on improving quality and content over quantity. Theseproviders wanted to build on existing efforts and have more time to work with patients ormore effective ways to engender trust among patients rather than increase the numberof outreach activities conducted.

When asked about the one thing that could be done in the state to improve womensexperiences with breast cancer diagnosis and treatment, thirty percent of providersrecommended patient navigation, nurse navigation or similar services that could

facilitate patient comprehension, decision-making, support and compliance. Otherpotential investments to improve breast cancer experiences included: improvedemotional and psycho-social support, reducing disparities in the use of support services,mandating universal breast cancer screening and treatment, and improving access todiagnostic 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 oninterviews with both providers and women diagnosed with late stage (Stage 3 and 4)breast cancers.

Qualitative Data Sources and Methodology

Provider InterviewsProvider interviews constitute the Community Profiles primary qualitative data. In orderto understand and depict the context and conditions in which womens breast screeningand care occur in the state, Komen Connecticut conducted qualitative interviews with


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providers. Following the 2009 predominance of physicians and nurses in both theprovider surveys and interviews, the Community Profile Team sought to broaden theview of womens breast health and breast cancer needs by seeking to learn from theexperiences of social workers. Social workers were sampled from the most populousareas of the state, based on their facilities of practice; facilities included existing Komen

Connecticut grantees as well as hospitals and cancer centers in the selectedgeographic areas. Additional subjects were referred by those completing the interviews.Twelve providers with social work, nursing and health education/outreachresponsibilities were asked about their perspectives on the state of breast cancereducation, screening and treatment in the state; the majority of these providers werehospital-based. Some providers also provided specific case studies (narrativedescriptions of individual, clinical cases) for illustrative purposes; nine case studies wereconsidered in this analysis.

Late Stage Cancer InterviewsIn addition to provider interviews, interviews were conducted with four women

diagnosed with Stage III or Stage IV breast cancers. Komen Connecticut is interestedin reducing the number of women diagnosed with late stage cancers and believed thatlessons from the first-hand experiences of women further help target programs andfunds to reduce late stage diagnoses in the state. Women were identified through twomethods: 1) provider referral and 2) responses to an electronic request from theAffiliate. Four interviews were completed in time for inclusion in the Community ProfileReport.

Interviewees were diagnosed in different years and were living in various states ofsurvivorship (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: statewideand regional perceptions of breast health, adapting programs and services for diversegroups of women, three important breast cancer messages, care across stages of lifeand illness, and organizational /institutional challenges. The data presented here arenot necessarily representative of all providers or womens experiences with breasthealth and/or breast cancer throughout the state due to both small sample sizes and areliance on convenience sampling. Provider data and survivor data are reviewedseparately.

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 states breastcancer screening and diagnostic efforts over the last three to five years. Many believedthat increased rates of cancer were attributable, at least in part, to improvements indiagnostics, more generally, and early detection, in particular. Despite universal


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agreement about improved breast cancer screening in the state, many also notedunsettling correlations between later diagnoses and low socioeconomic status with oneprovider stating early detection has not yet reached many of lower socioeconomicstatus.

Secondly, many providers commented on noticeable changes in screening delays andinsurance coverage as a result of the economic recession that began in 2008.Providers described seeing patients who: were responsible for higher insurancedeductibles (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 haddelayed routine screening and medical visits because of uncertainties related toinsurance coverage and other financial issues.

Two providers specifically mentioned the potential contributions of the high prevalenceof triple negative breast cancer among African American women. As triple negativebreast 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, thestates African American population and some proportion of breast cancer morbidity andmortality attributable to triple negative cancers.

The final perceptual shift in breast cancer work in the state is the increased presence ofimmigrant (documented and undocumented) and refugee populations who present newand unique challenges in terms of spreading messages about cancer prevention,screening and treatment. Providers are uncertain as to how changes in the populationwill change breast cancer rates and screening behaviors. This demographic changewas noted throughout the state, but most discussed by providers in the Hartford area,Bridgeport, Stamford and the New London area. This important feature of howConnecticuts demographic landscape is changing is described in more detail in thenext section.

Adapting Programs and Services for Diverse Groups of Women

When asked about their work in promoting breast health and/or providing breast cancercare, providers almost unanimously mentioned a need for their organizations andprograms to adapt or improve in order to better meet the needs of groups of patientsdeemed underserved as defined by their perceived lack of access to essential breasthealth 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 andhealth care in the state or region.

Providers participating in the interviews overwhelmingly stated that improving theutilization of screening services by Hispanic/Latina and African American women wasboth a priority and a challenge. Spanish-speaking and Latina populations weredescribed as difficult to reach despite the fact that the majority of providers reportproviding services in Spanish and hiring outreach workers to work with Hispanic/Latina


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women. Providers also reported that Hispanic and African American women seemed topresent with very late stage cancers or when significant breast health issues weretangible or obvious like a mass coming through the skin. Most providers believed thateducation, socioeconomic status, childcare, transportation and other competing lifepriorities prevent greater mammography use among these minority populations.

Table 11: Provider-Defined Underserved PopulationsPopulation Subgroup Potential Relevance to Cancer Burden

African American Concentrated in certain areas of the state; access to health care, serviceand insurance limited from some; higher prevalence of triple negativecancers; lower levels of genetic testing

Hispanics/Latinas Growing demographic group within most areas of the state; diversesubpopulations with different histories regarding the physical body,cancer, cancer screening and health beliefs; presence of fatalisticbeliefs.

Low income women Specialized providers deemed essential to help navigate healthinformation and health care systems

Underinsured Less help available for those with insurance, but who cant pay despite

insurance due to high deductibles or high co-pays; other insuranceissues surface as well like clauses that provide concerning levels ofscreening and care; women in this group dont understand that they mayget some help and may delay screening and/or treatment for costreasons

Uninsured Programs exist to help take care of this population; however, morepeople need to understand the programs and take advantage of them.

Immigrants and Refugees Many less familiar with cancer and concepts of routine screening orpreventive care. Increasing numbers in certain areas of the state. Oftendemonstrate need for more diagnostic services.

Undocumented residents Increasing numbers in certain areas of the state; many lackunderstanding about health care system and are ineligible for manygovernment programs; finding ways to pay for care and services is often

more challenging; lots of fear of revealing their statusmany onlypresent in crisis/illness.

While the majority of the states cancer incidence burden is borne by White women,most providers reporting making significant (if not always successful) attempts to reachracial, ethnic, and linguistic minority populations. African Americans andHispanics/Latinas were frequently described as target audiences for outreach efforts.Further, increasing numbers of Asians and Muslims noted in and near the states majorcities were described as being relatively new audiences for providers. Thesepopulations were described considered relatively unfamiliar with U.S. breast cancerscreening and the availability of support programs if a cancer is diagnosed. Several

providers reported an ongoing need to build trust and bridges to these newerConnecticut populations. Anecdotal evidence also revealed specific challenges facingthe elderly, lesbians and the homeless.

Three Important Breast Cancer Messages

When thinking about the messages that needed to be conveyed to the generalpopulation about breast cancer, three messages emerged as most important. First,


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providers expressed a desire for increased and/or improved understanding of theimportance of early detection. Despite improvements in screening and diagnosis acrossthe state in recent years, many providers described meeting women who simply failedto realize the importance of early detection. Some of these women, as womendiagnosed 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 manymisunderstandings about what a breast cancer diagnosis means todaywith somewomen believing that the timing of a diagnosis doesnt matter since cancer is a deathsentence 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 forpersonal or cultural reasons simply did not want to know their cancer status. Thisdesire to remain in the dark or not know ones status reminded one respondent of theearly days of HIV/AIDS testing. Knowing ones cancer status can improve outcomes

and survival as stated above, but additional testing can also help doctors understand apatients 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 areprograms available to assist many different types of women, not just the uninsured orindigent. Though providers described how finding gap funding and support for workingpoor and undocumented women was difficult, these same providers thought it wasimportant for women to understand that screening and care should not be delayed forfear of not qualifying for indigent care programs. All providers recounted cases wherewomen delayed care or treatment because they had insurance (but could not afford thedeductibles or co-pays) or were employed, and they believed they would not qualify forfree care.

Care and Services Across Stages of Life and Illness

One of the most commonly reported concerns about and desires for breast cancer carein the state involved ensuring access to quality information and support throughoutones health care experience from routine screenings and examinations to diagnosticservices through cancer treatment, recurrence risk reduction and /or end of life care.Moreover, patient navigation, nurse navigation and other comprehensive casemanagement 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 wouldhelp reduce cancer patient stress, provide a centralized source of support andinformation, potentially help diagnosed women get into treatment quicker, and helpprovide seamless care by coordinating disparate services and providers. While somefocused on ensuring continuity of care across various stages of cancer; othersemphasized the need for improved coordination and communication between differentprovider types and facilities e.g. primary care physicians and oncologist or cancercenter and hospital; and still others wanted to find ways to make sure that womens


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cancer risks, diagnosis and treatment could be considered critically important forwomen starting at ages younger than 40 through elderhood. Many respondentsbelieved that there has been an increase in the number of women under the age of 40years diagnosed with breast cancers in their area. One respondent noted that theelderly 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 stopbreast and cervical cancer screenings as they age, especially if they become isolated orare living alone.

Breast Cancer Screening and DiagnosisConsidering screening on one end of the cancer spectrum, most providers interviewedbelieved that clinical providers, namely, gynecologists and primary care physicians,remain the primary way that women find out about breast cancer screening. Outreachactivities were also described as important ways to encourage women to be screened.Outreach activities consisted of conventional health fairs and free mammography daysto health education sessions conducted in a variety of locations: churches, community-

based organizations, clinics and senior centers.

Womens putting themselves last, lack of understanding about the risks of getting breastcancer and fear of what will be found were the three most common reasons for womento delay or avoid breast cancer screening or mammography according to theinterviewed providers. Providers unanimously discussed the full schedules and busylives of the women they see and noted that most did not include their own health andscreenings unless an illness was disruptive to their work or schedule. Competing lifepriorities take precedence over breast self awareness and routine mammography formany women, particularly mothers/caregivers who also work outside of the home andsingle mothers. The majority of providers also noted the widespread misconceptionthat a family history of breast cancer is the most important determining factor of onesbreast cancer risk. These providers reported women who could not believe that theyhad cancer since no one in my family had breast cancer. One quarter of providersinterviewed described meeting women who simply preferred not to know their cancerstatus whether positive or negative; these women simply wanted to live without thinkingabout cancer. Insurance coverage, potential loss of pay (including lack of paid sickleave), language barriers and transportation were also described as potential barriers toappropriate breast cancer screening. Programs for the uninsured were simultaneouslydescribed as having significantly improved the uninsureds access to care in recentyears, but as also being underutilized or not sufficiently advertised. Further, though notthe focus of these interviews, many providers reported learning of strange caveats andriders in insurance policies that seemed to threaten or endanger womens health.Moreover, the lack of coverage for genetic testing was noted for both the insured anduninsured.

Finally, one potentially important consideration for womens delay in presentation wasonly mentioned by one provider, but seems worth mentioning here due to the perceivedprevalence across demographic groups as well as its purported rise over the last fewyears. Based on this providers experience, the use of alternative remedies and


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healing methods to treat perceived health problems may initially delay presentation forroutine screening and later delay initiation of treatment when cancers are diagnosed.When cancers are diagnosed, this provider described women as placing more faith inother healing modalities and wanting to try those before trying the treatment plansproposed by oncologists. This provider described women returning with more advanced

cancers after trying alternative healing methods. As many cancer centers andprograms presently embrace some complementary and alternative medicine (CAM)practices, this provider advised that those taking health histories or managing patientshave to know how to ask question about such practices respectfully and the providerdescribed the integrative center for health and wellness at her facility that allowsoncologists to collaborate with alternative practitioners.

Post-diagnosis and Treatment NeedsOnce women are diagnosed with breast cancer, providers reported the most significantchallenges being related to personal finances, social/emotional needs and physicalwellness. Almost all providers reported fewer challenges with women starting

treatment in a timely fashion once cancer had been detected. In fact, most providersdescribed how women no longer fall through the cracks when scheduling treatment oradditional diagnostics. Moreover, according to providers, once women are sure of theirbreast cancer diagnoses, they become most concerned about: losing their job orfinancial footing, struggling with issues related to their body image and the apparentside effects of treatment i.e. losing hair, and emotional issues related to mortality andsocial relationships. Particularly for women in households or families dependent upontheir income, the anxiety provoked by uncertainty about how the cancer diagnosisand/or treatment may impact ones ability to work, earn income and pay the bills wasdescribed as overwhelming. Similarly, many providers described young mothers fearand anxieties around sharing their cancer diagnosis with their children. Othersdescribed women who struggled with whether or not they should keep their cancersecret from loved ones, employers, etc. Several providers described women whoworked throughout their treatment despite being physically and emotionally exhausted.

Organizational/Institutional Challenges

In terms of the institutional and organizational challenges providers face while trying toadvance breast health in the state, limited financial resources, mediocre continuity ofcare and limited access to services due to cultural or geographic barriers were mostcommonly 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. Additionalfunds could be used to provide more: staff including navigators, screening anddiagnostic services, treatment, genetic testing, cultural and linguistic interpreters,counselors and psychiatric staff and logistical support. Many providers thoughtadditional money and/or staff could improve continuity of care if patients could rely onone person or comprehensive and thorough coordination process that could get themthrough cancer treatment and back to a primary care physician. A couple of providerscited the how access to services and care was limited in their geographic area due to


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the loss of funding for breast screening programs and the local populations discomfortwith traveling to distant towns for services. Most providers felt comfortable with theirexisting levels of language services though many noted that language remains a barrierfor 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 verydifferent from the U.S. medical model.

Experiences with Late Stage Cancers

Provider experiences with women diagnosed with or living with late stage (Stage 3 andStage 4) breast cancers can be compared to the perspectives of four women with suchdiagnoses as well as three additional case studies written up by a provider. These dataprovide a snapshot of what life is like for women diagnosed with late stage breastcancers. Over the course of ones engagement with the medical community fromdiagnosis 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 adifferent path than women diagnosed with Stage 1 or Stage 2 breast cancer. Thoughanecdotal, the stories provided by women and providers can help the Affiliate andothers working to fight breast cancer think about addressing the unique needs of thissubpopulation of breast cancer survivors.

Women with late stage cancer diagnoses in this analysis arrive at a cancer diagnosis intwo ways: 1) during routine screening or 2) when presenting with tangible evidence (apainful 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 physicians office believingsomething was very wrong; less than half of these women showed up after lapses in

regular medical care or insurance coverage. These accounts align with providersreports of both how women arrive at their initial late stage diagnosis as well asproviders perspectives that the common factor among late stage women is having fulllives, more pressing personal issues, and a tendency to put themselves last. Thesecharacter traits were described by almost all providers as being what women with latestage cancer diagnoses had in common. The only other potential commonality was thelikelihood that a woman had an aggressive cancer type. Providers did not report anyother similarities among those women diagnosed with late stage breast cancersincluding age group or race/ethnicity. Only women without insurance and/or lapses ininsurance reported waiting (one month to six years) before going to a providermost ofthese women relied on the states CBCCEDP. Consistent with providers reports of

seeing younger women diagnosed with cancer, three of the four women interviewedwere less than or very close to 40 years of age when they received their initial breastcancer diagnosis. Forty years is the age at which most national guidelines suggestwomen should begin annual mammography.

Once diagnosed with a late stage breast cancer, variations in womens treatment andcare seemed to stem from characteristics of their cancers rather than access andavailability of health care. Patient experiences after breast cancer diagnosis seem to


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corroborate provider claims that delays between diagnosis and treatment/illnessmanagement are less common than in years past. Women reported fairly quicktimelines between steps once cancer was diagnosed, with the most critical delaysoccurring 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 hergeographic area.

Depending on ones prognosis and treatment options, the psycho-social and emotionalsupport needs of women diagnosed with late stage cancers are different from those ofother breast cancer survivors. While two women reported positive experiences withcancer support groups, women and providers overwhelmingly agreed that supportgroups do not work for many late stage women. Women interviewed said that thediscussions taking place and the sense of hope present for many of the women in mostcancer support groups did not reflect their lives with breast cancer or their needs; two ofthe 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 internetsupport allowed them to not take time away from their families while fulfilling theiremotional support needs as needed from the comfort of their own homes. Severalwomen also described how the nature of ones relationship with cancer differs if you areexpecting to treat the cancer (and rid yourself of it. . . at least for a time) versus livingwith cancer as a chronic disease. When cancer will be part of ones life for the rest ofher days (though the years may be numerous), one has a different mentality thansomeone fighting the illness. Women with late stage cancers live with variousdiagnoses, prognoses and treatment options available to them with many womenreceiving infusions or treatments for the rest of their lives in order to slow theprogression of cancer and maintain a certain quality of life. In terms of needs, womenand providers believed the following things would be helpful to women facing late stagediagnoses:

A cancer advocate who could help present evidence and experience to women andhelp women make decisions and communicate with health care providers whenoverwhelmed

Differently packaged psycho-social and emotional supportmore one-on-onecounseling

Psycho-social and emotional support and information for spouses, partners andchildren

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


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Other needs mentionedtransportation and child carewere similar to the needsdescribed for all women diagnosed with breast cancer. However, providers thought itwas important to provide support and attention for single women without family orsignificant others and younger women (close to 40 years) who were part of youngfamilies.

Finally, it is of note that among these interviews and cases of women diagnosed withlate stage cancers, very few cultural factors were described as impacting womensscreening or treatment decisions. One woman described her religious beliefs and thesupport of church members who had also been diagnosed with breast cancer as beingcritical elements of her support system. Two women described how being raised to bestrong 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 womendescribed herself as powering through her tasks of daily living despite beingexhausted from treatment. Another said when she most needed extra hands she didnot 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 theisland to Connecticut for breast care, but who remained uncertain about where to seekcare once she arrived due to language barriers and lack of information about accessingthe health care system.

Summary of FindingsWithin this years exploratory data efforts, social and cultural barriers and needsseemed most prominent. While educational and informational aspects of breast cancerservice and care figured prominently, respondents sampled for both the quantitative andqualitative data collection projects were more likely to talk about social and culturalaspects of breast cancer rather than their educational/informational counterparts. In the2009 Community Profile Report, educational and informational needs and barriers weremost mentioned. As needs among providers and consumers are unlikely to changedrastically over a two year period, it makes sense that educational/informational issueswere still considered important. The shift in prominence is likely a reflection ofdifferences in the sample such that social workers, patient navigators, programmanagers and case managers comprised a greater proportion of providers than inprevious data collection efforts. These types of providers may be more familiar with andused to responding to patients financial, social and personal concerns. Moreover, thesalience of socioeconomic factors in light of the economic crisis as well as the attentionpaid to changes in health care coverage and policies may have helped social andcultural issues rise in prominence. In addition to the shift from education/information tosocial/cultural barriers or challenges, these data also seem to shift away fromorganizational and institutional issues towards challenges with the consumers/womenthemselves.

Table 12 describes statewide breast health needs identified by the Community Profileprocess. Opportunities exist within the state to increase and improve breast healthpromotion as well as ensure that existing laws, policies and programs to support breasthealth are enacted, periodically evaluated and enforced.


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Table 12: Statewide Breast Health NeedsBreast Health and Breast Cancer Needs for the State of Connecticut

Women lack knowledge about programs and services available to them as well as theimportance of screening and early detection. Women may also not realize how treatablebreast cancer may be when diagnosed early.

Diverse types of minority populations and the uninsured/underinsured are at particularrisk 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 lifechallenges. These programs may also help women navigate diagnosis and treatmentwhile prioritizing their own health amidst competing priorities.

The location of screening services in areas that minimize travel and time for womenmight help improve screening and

Documents

CT Community Profile 2011 (Komen CT)