Komen Lexington 2015 Community Profile Report

Transcription

SUSAN G. KOMEN®
LEXINGTON
Table of Contents
Table of Contents ........................................................................................................................ 2
Acknowledgments ...................................................................................................................... 3
Executive Summary .................................................................................................................... 5
Introduction to the Community Profile Report ........................................................................... 5
Quantitative Data: Measuring Breast Cancer Impact in Local Communities ............................. 6
Health System and Public Policy Analysis ................................................................................ 8
Qualitative Data: Ensuring Community Input .......................................................................... 10
Mission Action Plan ................................................................................................................. 14
Introduction ............................................................................................................................... 20
Affiliate History ........................................................................................................................ 20
Affiliate Organizational Structure ............................................................................................. 20
Affiliate Service Area ............................................................................................................... 21
Purpose of the Community Profile Report ............................................................................... 22
Quantitative Data: Measuring Breast Cancer Impact in Local Communities ...................... 24
Quantitative Data Report ......................................................................................................... 24
Additional Quantitative Data Exploration ................................................................................. 48
Selection of Target Communities ............................................................................................ 48
Health Systems and Public Policy Analysis ........................................................................... 58
Health Systems Analysis Data Sources .................................................................................. 58
Health Systems Overview ....................................................................................................... 58
Public Policy Overview ............................................................................................................ 67
Health Systems and Public Policy Analysis Findings .............................................................. 73
Qualitative Data: Ensuring Community Input ........................................................................ 74
Qualitative Data Sources and Methodology Overview ............................................................ 74
Qualitative Data Overview ....................................................................................................... 81
Qualitative Data Findings ...................................................................................................... 108
Mission Action Plan ................................................................................................................ 115
Breast Health and Breast Cancer Findings of the Target Communities ................................ 115
Mission Action Plan ............................................................................................................... 120
References............................................................................................................................... 126
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Acknowledgments
The Community Profile Report could not have been accomplished without the exceptional work,
effort, time, and commitment from many people involved in the process.
Susan G. Komen® Lexington would like to extend its deepest gratitude to the Board of
Directors and the following individuals who participated on the 2015 Community Profile
Team:
Carissa N. Adams, MPH, BA
Community Profile Consultant
Margaret Melissa Brown, MPH, BS
Community Profile Coordinator
Dr.P.H. candidate 2017, Health Management and Policy
Project Manager, Kentucky Violent Death Reporting System
College of Public Health, Department of Epidemiology, University of Kentucky
Eileen Smyth, BA
Director of Mission and Outreach
Vivian Lasley-Bibbs, MPH, BS
Board Liaison
Acting branch manager and Epidemiologist
Kentucky Department for Public Health
Office of Health Equity
A special thank you to the following entities for their assistance with data collection and
analyses, as well as providing information included in this report:
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Crystal Emerson, MPH, BA
Lorie Wayne Chesnut, MPH, DrPH, Assistant Professor of Epidemiology, University
of Kentucky College of Public Health
Gloria V. Sams, MA, Kentucky Cancer Program Cancer Control Specialist, Lake
Cumberland
Linda Gilker, Komen Board Member and businesswoman
Health Department Directors, staff, and other individuals who completed a Key
Informant Interview
Individuals who completed a Community Profile survey or participated in a focus
group
Kentucky Cancer Consortium
Kentucky Women's Cancer Screening Program
Grantees, Komen Lexington interns, and other organizations that helped distribute
surveys
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Thank you to the four survivors who openly shared their personal experiences with
breast cancer, and for their invaluable insight into the continuum of care and
survivorship:
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Mary A. Adams, Community Volunteer
Mary H. Johns, University of Kentucky retiree
Angela L. Marshall, Community Volunteer
Anonymous Survivor
Report Prepared by:
Susan G Komen® Lexington
324 N. Ashland Avenue
Lexington, KY 40502
(859) 368-7133
www.komenlexington.org
Contact: Eileen Smyth
Director of Mission and Outreach
[email protected]
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Executive Summary
Introduction to the Community Profile Report
Susan G. Komen® Lexington was formed in 1996 by a group of dedicated community
volunteers. On April 20, 1996, the first Susan G. Komen Lexington Race for the Cure® was held.
The group became an Affiliate in 2000. Up to 75 percent of the net dollars raised remain within
the Affiliate service area through funding and education programs; the remaining 25 percent
funds Komen Research Programs.
Komen® Lexington services a large and diverse geographic area that spans 58 counties in
central, southern, and eastern Kentucky. The Affiliate service area covers a mix of urban,
suburban, and rural communities, and, nearly all of the Kentucky counties are classified as
Appalachia. Forty-four out of 58 counties are considered rural, 45 are medically underserved
areas/populations, and nearly a quarter of the population lives in poverty.
The Affiliate’s outreach efforts have created three programs to reach minority populations.
These include: Colors of Promise, serving predominantly the Black/African-American
population; Lazos que Unen (Ties That Bind), serving predominantly the Hispanic/Latina
population; and general rural outreach promoting overall breast health (e.g. mammography
screenings, treatment referrals, and dissemination of educational resources). Komen Lexington
is partnered with many different hospitals, clinics, and patient navigation services.
The Affiliate community-based grant program supports nonprofit organizations that provide
innovative, evidence-based projects. In 2014, Komen Lexington awarded $200,000 to 15 health
organizations in Kentucky; this has allowed for progressive programs such as: Yes, Mamm!
Breast Health Program, Kentucky CancerLink, Project COPE, and the Pink Ribbon Initiative.
These programs have assisted in increasing awareness, education, screenings, detection, and
treatment of individuals within the Komen Lexington service area. The Affiliate’s communitybased grant program is made possible through financial support from the Komen Lexington
Race for the Cure. Additional funding comes from third party fundraisers, community events,
individual donations, and support of corporate sponsors.
The purpose of the Community Profile Report is to better understand the needs of each
community in its service area, align the Affiliate's strategic and operating plans, drive inclusion
and public policy efforts, and establish focused granting priorities, education needs, and
directions for marketing and outreach. The Community Profile includes an overview of data that
helps the Affiliate identify regions, communities, and populations most in need of breast health
services and grant funds. The report also evaluates current programs and services within the
Affiliate service area. Once breast health needs and gaps were identified, further evaluation
determined how community needs could be addressed through efforts in educational
programming, grantmaking, partnerships, and to help establish the focus of the Affiliate’s
strategic planning, grant funding efforts, and compel overall work. The Community Profile strives
to ensure local programs supported by the Affiliate target the people and areas most in need.
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Quantitative Data: Measuring Breast Cancer Impact in Local Communities
Susan G. Komen Lexington service area and demographic data were obtained from the
Kentucky State Data Center and the Kentucky Center for Education and Workforce Statistics.
Proportion of medically underserved and medical personnel shortage areas was obtained from
the US Department of Health and Human Services list of “Medically Underserved Areas 2014”.
The number of breast cancer cases, crude, as well as age-adjusted breast cancer incidence
and death rates, and stage at diagnosis were obtained from the Kentucky Cancer Registry. This
data source also provides overall breast cancer cases in the entire Commonwealth of Kentucky
and was used to assist in ranking the priority counties in the Affiliate service area. These data
supplement the data in the Quantitative Data Report for which many of the counties had small
numbers. Crude rates, as well as age-adjusted rates, were used to compare counties.
Considered a more accurate measure, age-adjusted rates correct for varying age distributions
across counties. Therefore, the Affiliate chose to use the Kentucky Cancer Registry data
because it provided the Affiliate with data that was not suppressed due to small numbers. The
Kentucky Cancer Registry is the official population-based central cancer registry for the
Commonwealth of Kentucky. Only female breast cancer data were gathered and analyzed.
Appalachian Priority 1 and 2 counties are all classified as rural and either Medically
Underserved Areas or Populations, while Minority target region counties are all classified as
urban and two counties (Fayette and Scott) are Medically Underserved Areas. In Kentucky,
percent is used as the measure for late-stage diagnosis data instead of rates, because rate per
100,000 would yield results too small to be useful. Table 1 shows demographic, socioeconomic,
and late-stage diagnosis measures for priority counties.
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Table 1. Priority counties by median household income, without medical insurance,
unemployment percentages, <high school diploma or equivalent, living in poverty
and percent late-stage diagnosis
Priority
Counties
Appalachian
Priority 1
Clay
Median
Household
Income
Without
Medical
Insurance
Unemployment Rate
< High
School
Diploma or
Equivalent
Living in
a
Poverty
% Lateb
Stage**
% Lateb
Stage***
$21,378
18.8
12.7
37.9
34.9
29.3
33.5
$22,296
17.7
12.7
37.9
34.5
30.4
34.1
Jackson
$22,213
19.4
14.4
34.6
33.8
37.5
44.1
Owsley
Appalachian
Priority 2
$19,624
19.2
10.9
41.1
36.4
20
22.2
$25,330
20.4
12.8
32.3
28.5
41.1
44.6
Clinton
$26,885
20.5
12.7
35.1
28
44.5
50
McCreary
$21,758
21.2
13.3
31.5
30.8
44.7
47.7
Wayne
$27,346
19.4
12.4
30.1
26.8
34
36.2
Minority Target
$50,780
16.2
7
14
14.9
23.8
29.2
Anderson
$52,294
14.4
7.4
12.6
11.5
16.9
21.1
Bourbon
$40,894
19.8
7.7
16.9
17.7
23.9
31.4
Clark
$45,486
15.8
8
19.7
15.8
20.9
24.7
Fayette
$48,779
18.1
6.3
11.3
18.2
27.4
34.1
Scott
$60,553
13
6.9
12.7
13.7
34.2
40.4
Woodford
$56,672
16.3
5.8
11.3
12.2
19.7
23.7
Kentucky Center for Education and Workforce Statistics, 2014. (http://KCEWS.ky.gov)
a
US Census Bureau, 2008-2012 American Community Survey, Table ID S1701 (5 year estimates.)
b
Kentucky Cancer Registry - Percent Stage at Diagnosis (Early in Situ & Local, and Local, First Primary) Site: Breast 2008-2011 by
County.
**Early stage = in situ and local, Late-Stage= regional and distal
*** Early stage = local, Late-Stage = regional and distant
Select cancer indicators and outcomes for target counties showed that for Appalachian Priority
1 and 2 regions: the total at-risk population was 173,693; total new female breast cancer cases
(2008-2011) was 266; average crude incidence rate (2008-2011) was 153.2 per 100,000; total
female breast cancer deaths (2008-2011) was 81; average crude death rate (2008-2011) was
46.6 per 100,000; average percent screening mammography in the last two years (female 5074) was 52.3 percent; and average late-stage (III and IV) diagnosis in 2010 was 35.1 percent.
For the Minority target region, numbers given are for the Black/African-American population:
total at-risk population was 110,016; total new female breast cancer cases were 115; average
crude incidence rate was 115.8 per 100,000 (Fayette and Scott Counties only); total female
breast cancer deaths were 27; and average crude death rate was 28.7 per 100,000. These last
two measures only represented data from Fayette County as data for other Minority target
region counties were suppressed due to small numbers of cases. Average percent screening
mammography in the last two years and average late-stage (III and IV) diagnosis were not
provided. Age-adjusted rates per 100,000 revealed an average invasive cancer incidence rate
of 121.2 for Appalachian Priority 1, 121.9 for Appalachian Priority 2, and 123.9 for the Minority
target region. Age-adjusted death rates per 100,000 were 41.9 for Appalachian Priority 1, 33.0
for Appalachian Priority 2, and 22.9 for the Minority target region. Age-adjusted late-stage
diagnosis rates per 100,000 were 41.1 for Appalachian Priority 1, 58.1 for Appalachian Priority
2, and 37.8 for the Minority target region.
The Community Profile Team analyzed and compiled data to determine target areas. Key risk
factors for Affiliate counties were analyzed including: rural or urban status, Medically
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Underserved Area (MUA) or Medically Underserved Population (MUP), proportion of population
living in poverty, proportion of minority population, proportion of medically uninsured, age
adjusted invasive cancer incidence rates [female breast] (2008-2011), age adjusted cancer
death rates [female breast] (2008-2011), and late-stage diagnosis rates [female breast] (20082011).The selected county-level variables were first stratified into two groups [Demographic
(living in poverty and without medical insurance) and Cancer variables (Age-Adjusted
Incidence, Age-Adjusted Deaths, Late-Stage Diagnosis (III and IV))], ranked within these two
groups from lowest rates to highest rates, and then combined into the final ranking.
From these data findings and through the analysis process, the three target communities
(Appalachian Priority 1 and 2 regions, Minority target region) were selected. Clay, Jackson, and
Owsley Counties (Appalachian Priority 1) have high levels of poverty, with more than one third
of their residents living in poverty. In this rural area of the state, providers are few and having
insurance does not assure access to care. Age-adjusted rates suggest that while overall
incidence is similar to statewide levels, women are not getting the care that they need and this
delay is resulting in lower rates of survival. Clinton, McCreary, and Wayne Counties
(Appalachian Priority 2) also have elevated levels of poverty. While the counties in the Minority
target region (Anderson, Bourbon, Clark, Fayette, Scott, and Woodford) do not rank poorly on
measures for the general population, stratifying by minority status (Black/African-American,
Hispanic/Latina) reveals hidden disparities and elevated risk of poor outcomes. While the
proportions of those living in poverty or without insurance are relatively low in these areas, this
is not so for minority populations, although small numbers limit the ability to provide rates for
many counties.
Health System and Public Policy Analysis
The Breast Cancer Continuum of Care (CoC) is a model that demonstrates how women would
normally move through the health care system for breast health care. Women would preferably
move through the CoC easily to receive timely, superior care and to facilitate optimal outcomes.
The four main steps in the CoC model are: screening, diagnosis, treatment, and follow-up.
The health system analysis helped the Affiliate investigate strengths and weaknesses of the
CoC in the target communities at the time the Profile was completed. The Appalachian Priority 1
target region had few resources: three health departments, three community health centers, and
one hospital. There is at least one mammography center in each county in this region. The
facilities in this region offer breast health screenings, but few to no treatment options. Patient
navigation options are limited, as are support group offerings and follow-up/survivorship options.
Komen Lexington has few partnerships in this region.
The Appalachian Priority 2 target region had few resources as well. These include three health
departments, two hospitals, and four community health centers. McCreary County does not
have a mammography center. As with the Appalachian Priority 1 region, there are screening
options but few to no treatment options, active breast cancer support groups, and few followup/survivorship options in this region. Current partnerships are limited, but like Priority 1 target
region, partnering with existing organizations and working with established organizations is the
first step to helping this population attain access to services they need.
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The Minority target region has more resources than both Appalachian priority county regions
combined. There are six health departments and eight hospitals, along with medical group
facilities, community health centers, free clinics, a breast center, outpatient care center, health
education center, and breast imaging center. Anderson County does not have a mammography
center. Treatment is available at multiple hospitals and breast care centers. Fayette County
offers the most extensive treatment options. There are 14 known established breast cancer
support groups in this region. There are opportunities for follow-up/survivorship, and several
locations offer multiple types of complimentary therapies. Komen Lexington has many
established partnerships, including Baptist Health Lexington, the Lexington-Fayette County
Health Department, and Community Action Center. Individuals from these organizations are
active on committees and help Komen Lexington in advocating for a healthy lifestyle. Churches
in Lexington partner with the Affiliate for Pink the Pews, an event where volunteers attend
churches in their community, give speeches about breast cancer awareness, explain what
Komen Lexington does, and give out educational materials. The Kentucky Department of Public
Health and University of Kentucky College of Public Health support committees and share
resources.
The Kentucky Women's Cancer Screening Program (KWCSP) provides screening
mammograms and diagnostic services at no cost for women 40-64 years of age, and those at or
below 250 percent of the annual federal poverty guidelines. This funding is provided through
CDC’s National Breast and Cervical Cancer Early Detection Program (NBCCEDP). With the
inception of the Affordable Care Act (ACA) many women now have a qualified health plan or are
covered by Medicaid. ACA screening services are provided with no co-pay or deductible for
those women who are enrolled in qualified health plans. Women in the Commonwealth of
Kentucky can get Medicaid treatment access in the state by applying for Medicaid online at
https://kyenroll.ky.gov/. KWCSP recruitment efforts are targeted to those meeting federal
guidelines as well as those underinsured women who have high co-pays for screening and/or
diagnostic services. This expanded effort to reach all women will enhance partnerships to
improve health outcomes of women particularly in the priority areas.
Kentucky's Comprehensive Cancer Control Coalition is the Kentucky Cancer Consortium (KCC).
KCC is a statewide partnership of various organizations committed to reducing the cancer
burden in the state. The mission of the KCC is to attain considerable reductions in incidence,
morbidity, and deaths of cancer among Kentucky citizens through a comprehensive, integrated,
and coordinated approach to cancer control (Kentucky Cancer Consortium [KCC], n.d.a). KCC
offers breast cancer objectives and strategies aimed at the individual, health care providers,
advocacy utilization, and workplace wellness. Examples of these objectives and strategies
include: increase the percentage of Kentucky women diagnosed at an early stage of breast
cancer from 84.0 percent (2006 KCR) to 87.0 percent by 2013; reduce structural barriers such
as limited hours of operation for screening sites, no childcare, and language and cultural factors;
utilize provider reminder and recall systems (e.g., chart stickers, electronic medical records);
mobilize grassroots advocates; and conduct assessment related to feasibility of executing
health promotion programs within Kentucky worksites, with special emphasis on cancer risk
reduction and control (KCC, 2013). There will be continued discussion between the Affiliate and
the KCC regarding links to services, care, education, and risk reduction efforts.
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There have been implications due to the implementation of the ACA. Underinsured women who
were once eligible through KWCSP for screenings are now eligible for health insurance through
Kynect, Kentucky's health insurance marketplace. KWCSP will continue to screen the uninsured
as well as increasing outreach efforts among the underinsured. The ultimate goal is to get
women connected to services and a medical home. The ACA allows for more funding for state
and local prevention efforts (American Public Health Association [APHA], 2012). Physicians
should expect many new patients (Harrah, 2013; APHA, 2012), and certain preventative
services will now be covered at no cost (Healthcare.gov, n.d., APHA, 2012). As a grantmaker,
the Affiliate should not directly fund patient navigators being utilized as insurance navigators. As
an educator, the Affiliate should ensure women are aware that insurance may now be available
to them. The Affiliate should continue to grant funds to assist in access and utilization of
diagnostic and treatment procedures. Most Community Profile work/grantmaking strategy
should align with health care systems in the target regions. New populations of uninsured
women include undocumented immigrants, individuals eligible for Medicaid but not enrolled,
individuals exempt from the health care mandate, and those choosing to stay uninsured. These
individuals need to be considered for evidence-based education interventions. The number of
low-income insured women will rise, consisting mostly of Hispanics/Latinos and the poorly
educated (Susan G. Komen, 2013).
There is a great need in the Affiliate's two Appalachian priority communities for more resources
in regards to breast cancer screenings, treatment, follow-up/survivorship, and access to care.
Partnerships with existing organizations such as health departments, the KWCSP, and KCC are
encouraged to assist in reaching target groups, areas with limited access to screening, and the
un/underinsured. Breast cancer support groups are not present in many service area counties.
The Affiliate should partner with more local community health centers. With Kentucky's Medicaid
expansion and goal to insure each resident, the Affiliate expects increased access to breast
health services to become available. The Affiliate is motivated to expand their involvement with
policy by attending future advocacy events, continuing to partner with the KCC, staying aware of
ACA changes and possible implications for the Affiliate, and investigating how Komen Lexington
can increase awareness of the importance of support services and breast cancer screenings.
Qualitative Data: Ensuring Community Input
Several key questions and variables were explored in the three target communities using
different data methods. Two types of surveys were used: breast cancer survivor and general
population surveys. The breast cancer survivor survey collected information from residents of
the target communities about the breast cancer CoC from a survivor’s experience. Responses
pertaining to the priority target communities fell under three themes: information and education
concerns (e.g., did they understand information given, did they want more information, were
they concerned about information quality, did their doctors involve them in health care decisions
and let them ask questions); knowledge about available resources within the community (e.g.,
awareness of Komen Lexington and KWCSP, ACA impact, screening and diagnosis
information); and identification of disparities (e.g., health insurance status, race/ethnicity,
education, and income). In addition, suggestions for improvement of the CoC experience
regarding diagnosis, treatment, availability of resources, follow-up care, and survivorship were
asked. General population surveys collected information from residents of the target
communities about basic breast cancer knowledge and screening habits. As with the breast
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cancer survivor survey, responses pertaining to the priority target communities fell under the
same three themes, with information and education concern questions being altered to ask
about basic breast health knowledge (e.g., do they feel educated about breast cancer, preferred
breast health provider, and most effective ways to provide health information to their
community) as opposed to specific breast cancer experiences.
Focus groups were held in two target communities. Key questions included: knowledge of what
Komen does/does not do, how can Komen best serve community needs, what would help the
community regarding breast cancer, and barriers to breast cancer screening/treatment. The
Appalachian Priority 1 focus group was held for community members and partners. Additional
questions asked during this focus group included ideas for partnerships with Komen Lexington,
and what Komen Lexington could do to facilitate partnerships making a difference in the
community. Three minority focus groups were held in the Minority target region. The three
categories of participants were: Hispanic/Latino, Black/African-American, and health care
workers/patient navigators. These focus groups were asked an additional question regarding
the cultural sensitivities/understandings that health care professionals or Komen Lexington
should know in working with communities of color or with racial minorities.
Twelve key informant interviews were completed in each target community. Key questions
asked include: the most common reasons why minority or underserved women don't seek
screening, cultural factors or reasons that might explain this, recommendations to improve
breast health care services, top barriers that keep women from getting routine breast health
care, what can be done to reduce these barriers, suggested funding priorities, and suggestions
of who to partner with to disseminate information on breast health and screening. A key
informant interviewed early on in the Profile process did not follow the same script as the other
35 interviews, and topics of this interview were: needs of the cancer patients, community
partners of the team works, and services and supplies the team would like to access. Four
survivor interviews were also completed in the Minority target region to gain an in-depth look at
the breast cancer journey from four different perspectives.
In the Appalachian Priority 1 region, the two breast cancer survey results showed that one
respondent wanted more information about their cancer, and one had heard of the KWCSP.
One respondent said they are now unable to access medical services if needed and the other
reported no change due to ACA implementation. Before diagnosis, one had received
mammograms and clinical breast exams while the other did not. The main suggestion for
improvement throughout the breast cancer experience included more education about what is
happening during cancer, complimentary therapies, and reducing risk associated with
recurrence.
The 13 general population surveys in the Appalachian Priority 1 target region revealed that just
over 61 percent considered themselves educated on breast cancer, and over 53 percent would
prefer to go to an OB/GYN first for medical services. The most effective ways to disseminate
breast health information to the community were health events, radio, and newspaper. Just over
61 percent had heard of the KWCSP. With regards to the ACA, 23.1 percent said they could
now seek medical services if needed, 53.8 percent reported no change, and around 15 percent
were unsure. A little over 46 percent perform self-breast exams, 84.6 percent get clinical breast
exams, and 80.0 percent had mammograms. Reasons for not getting mammograms included:
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under age 40, no family history of breast cancer, don't know what a mammogram is, don't have
medical insurance, and don't know where to get a mammogram. Note: Susan G. Komen utilizes
breast self-awareness messaging because breast self-exams are not an evidence-based
practice. To learn more about breast self-awareness, go to
http://ww5.komen.org/BreastCancer/BreastSelfAwareness.html.
The participants of the focus group in the Appalachian Priority 1 target region revealed that this
community needs funding for breast health programs, an understanding of services,
identification of individuals that need services and then providing those resources, treatment
closer to home, more education, and increased awareness of services. Fear, apathy,
embarrassment, time constraints, lack of education, and fear that radiation causes cancer seem
to be barriers to breast cancer screening. The main barriers to treatment appear to be cost,
transportation, and access to the health care system. Recommendations for partnerships
included outreach to clinics, sponsorships, and attending local events.
The 12 key informant interviews in the Appalachian Priority 1 target region discovered that the
most common reasons why minority or underserved women don't seek screening were cost, low
education level, belief that breast cancer is not going to happen to them, transportation, and not
understanding the importance of screening. Cultural factors or reasons that might explain this
were low levels of education and fear. Recommendations to improve breast health care services
were education, getting the word out regarding available services, and better access to
screenings in rural communities. Top barriers preventing women getting routine breast health
care were low education status, low income status, transportation, not aware of available
services, and fear. To reduce these barriers, key informants suggested more education while
patients are in clinics, getting the word out about available services, and transportation help.
Suggested priorities for funding were educational materials through various media, help with
cost and patient services, help with transportation, and mobile mammography. Suggestions for
partnerships that can help disseminate information on breast health and screening were health
departments, doctors, hospitals, cancer liaisons, and extension offices.
In the Appalachian Priority 2 target region, the two breast cancer survivor surveys showed that
one respondent wanted more information about their cancer. Neither survey taker had heard of
the KWCSP. With regards to the ACA, one reported no change while the other stated they could
now seek medical services if needed. Prior to diagnosis, both had performed self-breast exams
and received clinical breast exams, while one had mammograms as well. The main suggestions
for improvement through the CoC were: wishing Komen services had been offered, moving
toward treatment quickly, making a plan, considering all options, and learning about side effects.
The one general population survey in the Appalachian Priority 2 target region revealed that the
respondent considered themselves educated on breast cancer. They would prefer to go to an
OB/GYN first for medical services. They thought the most effective ways to disseminate breast
health information were newspaper, radio, and health events. They had heard of the KWCSP
and reported no change due to the ACA. This respondent had performed self-breast exams,
and received clinical breast exams and mammograms.
most common reasons why minority or underserved women don't seek screening were lack of
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knowledge, not knowing where to go for care, and cost. Cultural factors/reasons given to explain
this were women being dominated by men, reluctance to ask for help, fatalistic outlook, and that
it is a personal choice to get screened. Recommendations to improve breast health services
included funding for free low/cost services, maintaining a breast cancer coalition, health fairs,
mobile mammography, and partnering with local medical providers and nonprofits. Top barriers
preventing breast health screening were lack of knowledge, transportation, cost, and no/few
imaging centers in the counties. Frequent findings of what needs to be done to reduce these
barriers and improve access were: doctors reminding and encouraging patients during regular
check-ups, increasing funding for health departments and nonprofits, assisting with
transportation, mobile mammography services, providing education through media, and
worksite services. Suggestions for funding included: health departments, education, and filling in
the gaps that insurance does not cover. Suggestions for Affiliate partnerships to disseminate
information included: health departments, hospitals, local providers, nonprofit organizations, and
extension offices.
The 36 breast cancer survivor surveys in the Minority target region revealed that 25.0 percent
wanted more information about their cancer, and only 52.8 percent had heard of the KWCSP.
With regards to the ACA, 47.2 percent reported no change, 27.8 percent were unsure, and 16.7
percent said they could now seek medical services if needed. Before diagnosis only 2.8 percent
reported no prior screening activities. The main suggestions for improvement were: more
education about the entire breast cancer experience, more support from those that had gone
through it, keeping a journal, and speaking with cancer survivors.
The 168 general population surveys in the Minority target region showed just over 81 percent
considered themselves educated on breast cancer. Over 48 percent would prefer to go to an
OB/GYN first for medical services. The most effective ways they thought to provide breast
health information to their community were television, health events, newspaper and internet.
Just over 52 percent had heard of the KWCSP. Nearly 64 percent reported no change, 14.5
percent were unsure, and 13.9 percent could now seek medical services if needed due to the
ACA. Just over 59 percent performed self-breast exams, while at least 76 percent have had a
clinical breast exam or mammogram. Most common reasons why individuals do not get
mammograms were age under 40, no family history, and worry about pain of a mammogram.
The three focus groups in the Minority target region said that cultural understandings and
sensitivities include: being culturally competent in all ways (Black/African-American,
Hispanic/Latino, deaf, low-income, etc.), religion, and development of products for more varied
skin tones and hair types. Ideas for partnerships include more outreach, Komen funding, and
helping the individuals who need help the most. Komen Lexington can help serve the needs of
their community by partnering and communicating with more local organizations, helping
women with no or limited resources, and making educational material culturally diverse and
locally specific were comparable subjects among these three groups. The main barriers to
treatment appear to be religion, language barriers, fear, cost, transportation, misunderstanding
of and access to the health care system, and health literacy. Insurance, language barriers, fear,
time constraints, lack of education, and access to screening seem to be barriers to breast
cancer screening.
The 12 key informant interviews in the Minority target region revealed that the most common
reasons minority or underserved women don't seek breast health screening were not knowing
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where to access services, lack of insurance and transportation, fear, and distrust of system.
Cultural factors or reasons that may explain this were: generalization of Hispanic/Latino culture,
unworthiness to seek services, and distrust. Recommendations to improve breast health
services included mobile mammography, education, and continuing to fund health departments.
Top barriers that keep women from getting routine breast health care were: lack of education,
uninsured status, transportation, fear, and language barriers. What needs to be done to reduce
these barriers included partnerships, increased funding for education, media outreach, mobile
mammography, and free/low cost screenings. Suggestions for funding were: education,
transportation, and helping with all cancer supplies and expenses. The Affiliate could partner
with churches, hospitals, nonprofits, schools, women's groups, and libraries to spread breast
health information. Health departments are able to provide some education and outreach
services, but are limited in after care and follow-up. Survivor interviews showed that one
individual was not informed about post-surgical care and wanted more information about the
breast cancer process. Two survivors expressed the need for a survivorship program. Support
groups were helpful for two survivors, but one said she was uncomfortable talking during
support group meetings. All survivors expressed gratefulness for having support.
Mission Action Plan
Appalachian Priority 1
Problem Statement: Women in the Appalachian Priority 1 target community have low
education percentages, higher poverty levels, and lower median household income than the
Affiliate service area as a whole. The health system analysis found that current partnerships and
resources are limited, and that partnering with the Kentucky Women's Cancer Screening
Program (KWCSP) may be beneficial in reaching women unaware of its services. Key
informants, focus group participants, and information received on surveys indicated that more
education was needed regarding breast health care, the KWCSP, and about the Komen
organization. Additionally, more availability of free/low cost services are needed as well as an
increased presence by Komen Lexington in their local communities.
 Priority 1: Increase the amount of educational outreach initiatives in the counties of
Clay, Jackson, and Owsley.
o In FY16, visit each county in the target region, attending at least two community
events in Clay County, at least two events in Jackson County, and at least one
event in Owsley County to increase awareness about Komen Lexington and the
services available.
o By FY17 meet with at least five key informants in Clay, Jackson, and Owsley
Counties to determine how effective current educational materials are; consider
changing current materials based on feedback from meeting and using evidencebased practices. Evidence-based strategies include lowering reading level and
finding out if the Affiliate has the capability of making brochures regionally
specific.
o In FY17, disseminate 3,000 culturally appropriate educational materials to at
least two providers in Clay County, 1,500 in Jackson County, and 500 in Owsley
County.
o In FY17 meet with the KWCSP to see how Komen can be integrated with their
program. Discuss strategies about how to educate women about the services
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KWCSP offers, and how to reach the women who are still falling through the
cracks regarding health care services.

Priority 2: Increase the amount of grants targeting access to educational-based
programs and availability of services in the counties of Clay, Jackson, and Owsley.
o From FY16 to FY19, host at least one grant writing workshop per year in this
target community. Partner with and promote local organizations through these
workshops.
o Increase outreach efforts to counties through identifying and meeting with one
existing community organization within each of these counties by the end of
FY18 in order to discuss how to collaborate and get breast health services to the
community.
o Beginning with the FY16 Community Grant Request for Application, a funding
priority will be evidence-based education programs that focus on women in Clay,
Jackson, and Owsley Counties.
Problem Statement: Clay, Jackson, and Owsley Counties are rural and classified as Medically
Underserved Areas. The health system analysis found that facilities in this region offer some
breast health screenings but little to no treatment options. Some patient navigation is offered but
there are opportunities for more development in this rural area. There are limited followup/survivorship options such as complimentary therapies. The focus group noted that increased
funding and access to services closer to home would be beneficial. Transportation, cost, and
lack of mobile mammography units are barriers to screening services seen in key informant
interviews.
 Priority 1: Reduce barriers to access for breast health care in the counties of Clay,
Jackson, and Owsley.
o By FY17, meet with at least five key informants in Clay, Jackson, and Owsley
counties to discuss implementing and maintaining a breast cancer coalition.
o By end of FY18, one breast cancer coalition will be formed in each of the target
counties (Clay, Jackson, and Owsley).
 Priority 2: Increase amount of times mobile mammography units visit the target
communities in this region.
o By FY18, meet with current mobile mammography partners to discuss their
capability of serving these counties, what can be done moving forward regarding
screening services in this region, and to emphasize the need for mobile
mammography services in Clay, Jackson, and Owsley Counties.
priority will be mobile mammography programs that can provide at least one
mobile screening day in each of the following counties: Clay, Jackson, and
Owsley.
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Clinton, McCreary, and Wayne.
o In FY16, visit each county in the target region, attending at least one community
event in Clinton County, at least two events in McCreary County, and at least two
events in Wayne County to increase awareness about Komen Lexington and the
services available.
o By FY17 meet with at least five key informants in Clinton, McCreary, and Wayne
specific.
o In FY17, distribute 1,500 culturally appropriate educational materials to at least
two providers in Clinton County, 2,500 in McCreary County, and 3,000 in Wayne
County.
 Priority 2: Increase the amount of grants targeting access to educational-based
programs and availability of services in the counties of Clinton, McCreary, and Wayne.
workshops.
existing community organization within each of these counties by FY18 in order
to discuss how to collaborate and get breast health services to the community.
o Beginning with the FY16 Community Grant Request for Application, a key
funding priority will be evidence-based education programs that focus on women
in Clinton, McCreary, and Wayne Counties.
Problem Statement: Clinton, McCreary, and Wayne Counties are rural. Clinton and Wayne
Counties are classified as Medically Underserved Areas, and McCreary County is classified as
a Medically Underserved Population. The health system analysis found that facilities in this
region offer some breast health screenings but little to no treatment options. McCreary County
does not have a mammography center. Some patient navigation is offered but there are
opportunities for more development in this rural area. There are limited follow-up/survivorship
options such as complimentary therapies. Transportation, cost, and lack of mobile
mammography units are barriers to screening services seen in key informant interviews.
 Priority 1: Reduce barriers to access for breast health care in the counties of Clinton,
McCreary, and Wayne.
o By FY17, meet with at least five key informants in Clinton, McCreary, and Wayne
Counties to discuss implementing and maintaining a breast cancer coalition.
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By end of FY19, one breast cancer coalition will be formed in each of the target
counties (Clinton, McCreary, and Wayne).
o

Priority 2: Increase amount of times mobile mammography units visit the target
o By FY18, meet with current mobile mammography partners to discuss their capability
of serving these counties, what can be done moving forward regarding screening
services in this region, and to emphasize the need for mobile mammography
services in Clinton, McCreary, and Wayne Counties.
o Determine count of how often mobile mammography units come to McCreary
County; increase by a minimum of one visit per year by end of FY19.
o Beginning with the FY16 Community Grant Request for Application, a funding priority
will be mobile mammography programs that can provide at least one mobile
screening day in each of the following counties: Clinton, McCreary, and Wayne.
Minority Target Region
Problem Statement: While the overall percentage of those living in poverty in the Minority
target region is less than the Affiliate service area as a whole, this is not so for minorities in this
region. Bourbon and Fayette Counties have higher rates of uninsured than the rest of the
service area. The health systems analysis found many available resources in this region. Only
Anderson County does not have a mammography center. This region has many current
partners, but these partners are predominantly located in Fayette County. Focus groups
emphasized the need for the Affiliate to be culturally competent in all ways, increase amount of
products (e.g., wigs and prostheses) in various skin tones, increase education, partnering more
with local organizations, and reducing language barriers. Surveys showed that people needed
to be more educated about the goals and strategies of Komen and the KWCSP. Key informant
interviews found that barriers to care include generalization of Hispanic/Latino culture, distrust,
and inability to get off work for screening.
 Priority 1: Increase the amount of Minority specific educational outreach initiatives in the
counties of Anderson, Bourbon, Clark, Fayette, Scott, and Woodford.
o By FY18 visit each county in the target region and partner with community
organizations in each of the counties to either host or attend local events (e.g.,
festivals and health fairs), with an emphasis on educating Hispanic/Latino and
Black/African-American populations. Have women who are integrated in the
community and from Hispanic/Latino and Black/African-American backgrounds
attend with Komen representatives. Attend at least one event in Anderson
County, two events in Bourbon County, two events in Clark County, three events
in Fayette County, two events in Scott County, and one event in Woodford
County.
o In FY16 hold joint meetings at the Affiliate at least twice with a minimum 10 key
informants and current Komen Lexington committee members (Colors of Promise
and Lazos Que Unen) to get their perspective on the biggest educational issues
in the community and what the Affiliate can do to try to remedy those. Also
discuss how to go about increasing amount of products at breast cancer service
organizations that are pigmented for a wider array of skin tones.
o In FY17 disseminate 3,000 culturally appropriate education materials to at least
two providers in Anderson County, 2,500 in Bourbon County, 3,500 in Clark
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
County, 10,000 in Fayette County, 5,000 in Scott County, and 3,000 in Woodford
County.
program. Discuss strategies about how to educate Minority women about
KWCSP services, and how to reach the women who are still falling through the
o By FY19 expand Pink the Pews outreach outside of Fayette County to the five
other counties in this region (Anderson, Bourbon, Clark, Scott, and Woodford),
with a minimum of five churches in each county participating.
Priority 2: Increase the amount of grants targeting access to Minority specific
educational-based programs and availability of services in the counties of Anderson,
Bourbon, Clark, Fayette, Scott, and Woodford.
o From FY16 to FY19, host at least one grant writing workshop per year in each
county (Anderson, Bourbon, Clark, Fayette, Scott, and Woodford) in this target
community. Partner with and promote local organizations through these
workshops.
community.
priority will be evidence-based education programs that focus on minority and
vulnerable women (deaf, visually impaired, etc.), with special emphasis on
Hispanic/Latina and Black/African-American women in Anderson, Bourbon,
Clark, Fayette, Scott, and Woodford Counties.
Problem statement: The health systems analysis revealed that support groups are widespread
in Fayette County, but the only other known support group in this region is in Clark County.
Despite the availability of support groups in Fayette County, more support services are needed
in Fayette as well as the other five counties (Anderson, Bourbon, Clark, Scott, and Woodford) in
this region. Breast cancer survivor survey respondents, attendees of focus groups, key
informants, and survivors interviewed in the target counties in this region expressed the need for
a survivorship program which would pair those recently diagnosed with someone who has
already gone through breast cancer.
 Priority 1: Create and implement a pilot survivorship program in Fayette County that will
focus on educating and supporting recently diagnosed individuals with breast cancer by
pairing breast cancer survivors of similar demographic and other social and cultural
commonalities with these individuals.
o By FY17 meet at least six times with established survivorship committee to
develop a program that will help supply the resources and knowledge that is
needed to make the best informed health care decisions possible for program
participants. Topics will include: where and from whom to get funding, what
supplies will be needed (e.g., baskets full of care items such as Komen t-shirts
and lotions for dry skin caused by treatment, and resource documents that will
include local information that may not be common knowledge such as where to
find post-surgical supplies and where to get information on reconstruction
options), steps that need to be taken to implement the program, how progress
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will be evaluated (e.g., post-program surveys and notations in chronological
patient files), how participants will be monitored and tracked, and how cosurvivors of program participants, such as spouses and children, can be helped
as well.
In FY17 meet with hospitals and health care providers in Fayette County and let
them know about the program and its plans. Interview survivors on their
experiences: which doctors they went to, what products they used during
treatment and beyond, what they wish they had known, etc. Get feedback and
tweak program as needed.
In FY18, implement program in Fayette County working with health care
partners.
Beginning FY18 monitor the progress and impact of the program to determine
what works and what does not.
Tweak survivorship program as needed FY19-on. Discuss plans to implement
program in other Minority target counties, and what would need to be adjusted
per each county's needs. Discuss if current program could be adapted in
Appalachian Priority 1 and 2 regions and potential partners that could help in the
project's implementation.
o
o
o
o
Disclaimer: Comprehensive data for the Executive Summary can be found in the 2015 Susan
G. Komen® Lexington Community Profile Report.
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Introduction
Affiliate History
Susan G. Komen Lexington was formed in 1996 by a group of dedicated community volunteers
committed to raising funds to increase breast cancer awareness and help in the fight to
eradicate breast cancer. On April 20, 1996, the first Susan G. Komen Lexington Race for the
Cure was held at the Kentucky Horse Park. The group became an Affiliate in 2000 and held
their first Pink Tie Gala fundraiser in 2002. Komen Lexington has contributed over $4.5 million
toward the effort to help find the cure, reduce deaths, and decrease incidence rates for the
Commonwealth of Kentucky. Up to 75 percent of the net dollars raised remain within the Affiliate
service area through grant funding and education programs; the remaining 25 percent funds
Komen Research Programs.
The Affiliate’s outreach program has created outreach programs to reach minority populations.
These include: Colors of Promise, serving predominantly the Black/African-American
population; Lazos que Unen (Ties That Bind), serving predominantly the Hispanic/Latina
population; and general rural outreach promoting overall breast health (e.g. mammography
screenings, treatment referrals, and dissemination of educational resources). The Affiliate
participates in Kentucky's state cancer coalition, the Kentucky Cancer Consortium, and is
partnered with Commerce Lexington and the Kentucky Women's Cancer Screening Program,
among many others. With funding and/or partnering with over 20 different hospitals, clinics, and
patient navigation services, Komen Lexington has been able to reach out to women in the whole
58 county region.
The Affiliate community-based grant program supports nonprofit organizations that provide
innovative, evidence-based projects. In 2014, Komen Lexington awarded $200,000 to 15 health
organizations in Kentucky; this has allowed for progressive programs such as: Yes, Mamm!
Breast Health Program, Kentucky CancerLink, Project COPE, and the Pink Ribbon Initiative.
These programs have assisted in increasing awareness, education, screenings, detection, and
treatment of individuals within the Komen Lexington service area. The Affiliate’s communitybased grant program is made possible through the financial support from its signature
fundraiser, the Komen Lexington Race for the Cure. Additional funding comes from third party
fundraisers, community events, individual donations, and the generous support of corporate
sponsors.
Affiliate Organizational Structure
Komen Lexington has three full time staff members: Affiliate Director, Director of Mission and
Outreach, and Director of Finance and Operations. The Affiliate utilizes the help of interns and
volunteers to continue its mission. The staffing structure is seen in Figure 1.1.
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Affiliate Director
Director of Mission
and Outreach
Director of Finance
and Operations
- Interns
- Volunteers
Figure 1.1. Susan G. Komen Lexington staffing structure
A Board of Directors functions to advise, assist, and aid in efforts to support breast cancer
education and outreach programs. The Board of Directors consists of a Board President, Vice
President, Secretary/Treasurer, and several board members. In 2014, the Affiliate had three
committees: Outreach Committee, Colors of Promise, and Lazos que Unen. The Director of
Mission and Outreach is a participant in all three of these committees.
Affiliate Service Area
Komen Lexington serves a large and diverse geographic area that spans 58 counties in central,
southern, and eastern Kentucky. The Affiliate service area covers a combination of urban,
suburban, and rural communities. The Affiliate service area encompasses nearly all of the
Kentucky counties classified as Appalachia by the Appalachian Regional Commission. Many of
the Kentucky Appalachian counties are considered the poorest among the 13 state Appalachian
region. In addition, the service area is further diversified by large Amish and Mennonite
communities and migrant farm workers. Forty-four out of 58 counties are considered rural, 45/58
are medically underserved areas/populations, and nearly a quarter of the population lives in
poverty.
The Affiliate service area includes the state capitol, Frankfort, located in Franklin County. The
five counties with the largest population size in the service area are Fayette, Madison, Pike,
Pulaski, and Laurel Counties. Kentucky has many rural counties primarily because the
population is spread out over more miles in some counties. Some rural counties have a high
population, such as Pike County, but are rural because the population does not live tightly
packed together. Transportation availability is very limited, especially outside of urban areas.
Table 1.1 shows key service area population characteristics, and Figure 1.2 is a map of Komen
Lexington’s service area.
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Table 1.1. Key service area population characteristics
White
93.7%
Black/African-American
4.9%
Non-Hispanic/Latina
97.7%
Hispanic/Latina
2.3%
Female Age 40 Plus
49.8%
In rural areas*
44/58 counties
In Medically Underserved Areas/Populations**
45/58 counties
In Poverty***
24.9%
Susan G. Komen Lexington Quantitative Data Report-2014
*Kentucky State Data Center, 2014 (http://ksdc.louisville.edu)
** US Department of Health and Human Services, 2014 (http://hrsa.gov)
*** US Census Bureau, 2008-2012 American Community Survey, Table ID S1701 (5 year estimates.)
Figure 1.2. Susan G. Komen Lexington service area
Purpose of the Community Profile Report
The purpose of the Community Profile Report is to:
 Better understand the community in its service area and their individual needs.
 Align the Affiliate's strategic and operating plans.
 Drive inclusion efforts in the Affiliate's community.
 Drive public policy efforts.
 Establish focused granting priorities.
 Establish focused education needs.
 Establish directions for marketing and outreach.
 Strengthen sponsorship efforts.
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The Profile will be used in several ways by the Affiliate. The Community Profile includes an
overview of demographic and breast cancer statistics highlighting target areas, groups, and
issues. The data helps the Affiliate identify regions, communities, and populations most in need
of breast health services and grant funds.
The report also evaluates the current programs and services within the Affiliate service area to
identify existing assets and areas of concern. Once breast health needs and gaps were
identified, further evaluation determined how community needs could be addressed through the
Affiliate’s efforts in educational programming, grantmaking, partnerships, and public policy
efforts, or through a combination of several of these strategies. Targeted priorities and strategic
objectives on how to help bridge the identified gaps in breast health services help determine the
focus of the Affiliate’s strategic planning, grant funding efforts, and drive the overall work of the
Affiliate. The Community Profile strives to make sure local programs supported by the Affiliate
target the people and areas most in need and ensures they are non-duplicative in the
communities they are serving.
The Community Profile Report will be shared throughout the community. The Profile will be
posted on Komen Lexington's website, and a link to it will be placed on the Affiliate's social
media accounts. Partners such as Kentucky Cancer Consortium and the Kentucky Women's
Cancer Screening Program will be notified and asked to distribute the profile through their
newsletters, members, partners, etc. Current and former grantees will be informed, and the
Affiliate will make an effort to ensure all health departments in the service area are aware of the
report. Local government will be contacted about the reports completion, and the Affiliate hopes
to alert state government as well. The Profile will also be shared with local news stations in
Lexington, and with newspapers in the community. Additionally, the Affiliate will attempt to
inform hospitals, health systems, breast care centers, and organizations identified during the
health systems analysis.
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Quantitative Data: Measuring Breast Cancer Impact in
Local Communities
Quantitative Data Report
Introduction
The purpose of the quantitative data report for Susan G. Komen Lexington is to combine
evidence from many credible sources and use the data to identify the highest priority areas for
evidence-based breast cancer programs.
The data provided in the report are used to identify priorities within the Affiliate’s service area
based on estimates of how long it would take an area to achieve Healthy People 2020
objectives for breast cancer late-stage diagnosis and death rates
(http://www.healthypeople.gov/2020/default.aspx).
The following is a summary of Komen Lexington’s Quantitative Data Report. For a full report
please contact the Affiliate.
Breast Cancer Statistics
Incidence rates
The breast cancer incidence rate shows the frequency of new cases of breast cancer among
women living in an area during a certain time period (Table 2.1). Incidence rates may be
calculated for all women or for specific groups of women (e.g., for Asian/Pacific Islander women
living in the area).
The female breast cancer incidence rate is calculated as the number of females in an area who
were diagnosed with breast cancer divided by the total number of females living in that area.
Incidence rates are usually expressed in terms of 100,000 people. For example, suppose there
are 50,000 females living in an area and 60 of them are diagnosed with breast cancer during a
certain time period. Sixty out of 50,000 is the same as 120 out of 100,000. So the female breast
cancer incidence rate would be reported as 120 per 100,000 for that time period.
When comparing breast cancer rates for an area where many older people live to rates for an
area where younger people live, it’s hard to know whether the differences are due to age or
whether other factors might also be involved. To account for age, breast cancer rates are
usually adjusted to a common standard age distribution. Using age-adjusted rates makes it
possible to spot differences in breast cancer rates caused by factors other than differences in
age between groups of women.
To show trends (changes over time) in cancer incidence, data for the annual percent change in
the incidence rate over a five-year period were included in the report. The annual percent
change is the average year-to-year change of the incidence rate. It may be either a positive or
negative number.
 A negative value means that the rates are getting lower.
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

A positive value means that the rates are getting higher.
A positive value (rates getting higher) may seem undesirable—and it generally is.
However, it’s important to remember that an increase in breast cancer incidence could
also mean that more breast cancers are being found because more women are getting
mammograms. So higher rates don’t necessarily mean that there has been an increase
in the occurrence of breast cancer.
Death rates
The breast cancer death rate shows the frequency of death from breast cancer among women
living in a given area during a certain time period (Table 2.1). Like incidence rates, death rates
may be calculated for all women or for specific groups of women (e.g., Black/African-American
women).
The death rate is calculated as the number of women from a particular geographic area who
died from breast cancer divided by the total number of women living in that area. Death rates
are shown in terms of 100,000 women and adjusted for age.
Data are included for the annual percent change in the death rate over a five-year period.
The meanings of these data are the same as for incidence rates, with one exception. Changes
in screening don’t affect death rates in the way that they affect incidence rates. So a negative
value, which means that death rates are getting lower, is always desirable. A positive value,
which means that death rates are getting higher, is always undesirable.
Late-stage incidence rates
For this report, late-stage breast cancer is defined as regional or distant stage using the
Surveillance, Epidemiology and End Results (SEER) Summary Stage definitions
(http://seer.cancer.gov/tools/ssm/). State and national reporting usually uses the SEER
Summary Stage. It provides a consistent set of definitions of stages for historical comparisons.
The late-stage breast cancer incidence rate is calculated as the number of women with regional
or distant breast cancer in a particular geographic area divided by the number of women living
in that area (Table 2.1). Late-stage incidence rates are shown in terms of 100,000 women and
adjusted for age.
Table 2.1. Female breast cancer incidence rates and trends,
death rates and trends, and late-stage rates and trends
Incidence Rates and Trends
Population Group
US
Female
Population
(Annual
Average)
# of
New
Cases
(Annual
Average)
Ageadjusted
Rate/
100,000
154,540,194
182,234
122.1
.
-
2,179,870
3,056
HP2020
Kentucky
®
Death Rates and Trends
Trend
(Annual
Percent
Change)
Late-stage Rates and Trends
# of
New
Cases
(Annual
Average)
Ageadjusted
Rate/
100,000
-1.9%
64,590
43.8
-1.2%
20.6*
-
-
41.0*
-
23.1
-1.8%
1,083
43.4
-2.6%
# of
Deaths
(Annual
Average)
Ageadjusted
Rate/
100,000
-0.2%
40,736
22.6
-
-
-
121.3
-1.0%
597
Trend
(Annual
Percent
Change)
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Trend
(Annual
Percent
Change)
Female
Population
(Annual
Average)
# of
New
Cases
(Annual
Average)
Ageadjusted
Rate/
100,000
852,011
1,176
118.6
801,528
1,119
39,842
American Indian/Alaska
Native (AIAN)
# of
New
Cases
(Annual
Average)
Ageadjusted
Rate/
100,000
NA
426
43.3
-1.8%
23.7
NA
407
43.2
-1.6%
13
36.7
NA
17
49.4
-8.1%
SN
SN
SN
SN
SN
SN
SN
SN
SN
SN
SN
SN
SN
SN
SN
1,172
119.2
-1.6%
241
24.2
NA
424
43.4
-1.8%
16,880
4
51.3
-23.8%
SN
SN
SN
SN
SN
SN
9,402
11
93.2
6.5%
SN
SN
SN
5
41.9
2.1%
10,823
14
114.9
-1.8%
SN
SN
SN
4
32.2
-6.1%
Bath County - KY
5,837
9
122.3
-4.6%
SN
SN
SN
3
45.7
-10.9%
Bell County - KY
14,856
19
97.6
-13.0%
4
22.8
-1.8%
7
37.3
-9.8%
Bourbon County - KY
10,237
13
104.5
-18.9%
4
32.5
-1.2%
4
30.5
-12.0%
Boyd County - KY
24,858
36
108.9
5.2%
10
27.7
-2.6%
13
39.5
12.4%
Boyle County - KY
14,435
22
114.9
11.7%
5
25.4
-1.6%
9
48.9
8.4%
7,116
11
122.5
-19.0%
SN
SN
SN
5
53.6
-10.2%
Carter County - KY
14,018
20
119.6
6.8%
5
28.0
NA
8
46.3
-9.1%
Casey County - KY
8,157
12
124.4
-2.4%
SN
SN
SN
6
64.9
1.7%
Clark County - KY
18,070
29
131.4
11.8%
6
26.5
-0.8%
8
35.2
7.0%
Clay County - KY
10,324
15
118.1
2.3%
5
37.2
NA
5
43.2
9.2%
Clinton County - KY
5,111
8
118.8
-17.3%
SN
SN
SN
4
61.7
-24.5%
Cumberland County - KY
3,537
4
84.8
NA
SN
SN
SN
SN
SN
SN
Elliott County - KY
3,363
4
106.2
-7.8%
SN
SN
SN
SN
SN
SN
Estill County - KY
7,467
12
137.0
-1.6%
SN
SN
SN
4
49.3
-11.1%
146,526
212
143.6
-1.4%
33
22.0
-2.4%
67
46.0
2.4%
Floyd County - KY
20,398
25
101.3
-2.8%
7
29.5
-0.2%
9
37.3
1.6%
Franklin County - KY
25,311
45
148.6
-3.8%
9
28.3
-1.7%
13
44.2
-4.7%
Garrard County - KY
8,534
14
139.1
2.0%
SN
SN
SN
5
50.5
8.2%
Green County - KY
5,777
9
118.9
-9.3%
SN
SN
SN
SN
SN
SN
Greenup County - KY
19,099
28
111.8
-1.1%
7
27.9
-0.5%
9
34.4
-5.1%
Harlan County - KY
15,261
21
109.0
-23.6%
5
26.8
0.6%
9
45.6
-27.6%
Harrison County - KY
9,565
12
104.1
7.1%
SN
SN
SN
3
30.2
32.1%
Jackson County - KY
6,815
10
130.3
2.1%
SN
SN
SN
5
60.1
-15.2%
Jessamine County - KY
24,126
29
116.1
-2.8%
6
27.1
NA
11
43.6
-2.2%
Johnson County - KY
11,891
17
120.6
18.3%
4
26.8
3.9%
6
45.6
31.3%
# of
Deaths
(Annual
Average)
Ageadjusted
Rate/
100,000
-1.7%
241
24.1
118.0
-1.3%
228
47
132.4
-2.9%
1,999
SN
SN
Asian Pacific Islander
(API)
8,642
SN
Non-Hispanic/ Latina
835,130
Population Group
Komen Lexington Service
Area
White
Hispanic/ Latina
Adair County - KY
Anderson County - KY
Breathitt County - KY
Fayette County - KY
®
Trend
(Annual
Percent
Change)
Trend
(Annual
Percent
Change)
26 | P a g e
Trend
(Annual
Percent
Change)
Female
Population
(Annual
Average)
# of
New
Cases
(Annual
Average)
Ageadjusted
Rate/
100,000
Knott County - KY
8,347
11
107.0
Knox County - KY
16,381
23
Laurel County - KY
29,642
Lawrence County - KY
# of
New
Cases
(Annual
Average)
Ageadjusted
Rate/
100,000
SN
5
50.2
-18.3%
26.6
0.4%
9
47.5
-13.2%
7
21.0
-1.7%
13
39.2
0.7%
-11.1%
SN
SN
SN
4
39.8
8.0%
93.1
25.1%
SN
SN
SN
SN
SN
SN
8
101.2
3.1%
SN
SN
SN
4
50.9
8.5%
12,404
18
114.4
1.7%
5
29.3
-1.1%
8
48.2
-19.0%
12,535
14
89.6
-0.9%
3
21.2
NA
6
41.6
-8.1%
McCreary County - KY
8,431
12
126.1
-6.7%
3
34.2
NA
6
62.0
-8.1%
Madison County - KY
42,067
55
133.1
0.5%
10
24.2
-1.7%
19
45.1
-0.6%
Magoffin County - KY
6,672
8
107.5
18.5%
SN
SN
SN
4
53.8
29.6%
Martin County - KY
5,878
6
88.5
-20.7%
SN
SN
SN
SN
SN
SN
Menifee County - KY
3,216
5
115.1
6.1%
SN
SN
SN
SN
SN
SN
Mercer County - KY
10,866
15
106.1
-4.8%
5
37.0
1.0%
6
45.1
-14.1%
Montgomery County - KY
13,269
17
115.3
-10.6%
4
22.4
-4.0%
7
51.8
-12.1%
Morgan County - KY
6,113
6
72.6
13.2%
SN
SN
SN
SN
SN
SN
Nicholas County - KY
3,607
5
103.3
-10.4%
SN
SN
SN
SN
SN
SN
Owsley County - KY
2,372
SN
SN
SN
SN
SN
SN
SN
SN
SN
Pendleton County - KY
7,409
9
106.8
-7.2%
SN
SN
SN
4
41.4
-15.9%
Perry County - KY
14,546
16
89.6
14.3%
SN
SN
SN
7
40.4
39.4%
Pike County - KY
33,329
46
114.6
-4.2%
10
23.3
0.0%
16
41.7
-14.4%
Powell County - KY
6,426
11
145.9
-3.4%
SN
SN
SN
4
55.1
-4.4%
Pulaski County - KY
31,771
41
103.6
-4.8%
6
14.9
-3.3%
16
41.6
-5.9%
Rockcastle County - KY
8,680
13
118.6
8.2%
SN
SN
SN
6
54.5
-8.3%
Russell County - KY
8,913
9
80.0
-1.8%
SN
SN
SN
SN
SN
SN
Scott County - KY
22,841
30
137.6
-1.4%
6
26.7
-1.2%
12
53.7
4.4%
Taylor County - KY
12,538
18
113.2
0.6%
4
21.4
NA
7
49.4
6.3%
Wayne County - KY
10,461
17
127.2
1.1%
4
34.1
0.2%
6
50.6
-1.3%
Whitley County - KY
18,521
26
120.1
-10.1%
4
18.5
-2.4%
10
45.6
-9.8%
3,712
5
105.9
28.7%
SN
SN
SN
SN
SN
SN
12,779
20
130.1
-5.0%
SN
SN
SN
4
29.4
-9.4%
# of
Deaths
(Annual
Average)
Ageadjusted
Rate/
100,000
-7.3%
SN
SN
116.1
-10.3%
5
39
116.3
-7.5%
7,989
10
100.2
Lee County - KY
3,581
4
Leslie County - KY
5,797
Letcher County - KY
Lincoln County - KY
Population Group
Wolfe County - KY
Woodford County - KY
Trend
(Annual
Percent
Change)
Trend
(Annual
Percent
Change)
*Target as of the writing of this report.
NA – data not available.
SN – data suppressed due to small numbers (15 cases or fewer for the 5-year data period).
Data are for years 2006-2010.
Rates are in cases or deaths per 100,000.
Age-adjusted rates are adjusted to the 2000 US standard population.
Source of incidence and late-stage data: North American Association of Central Cancer Registries (NAACCR) – Cancer in North
America (CINA) Deluxe Analytic File.
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27 | P a g e
Trend
(Annual
Percent
Change)
Source of death rate data: Centers for Disease Control and Prevention (CDC) – National Center for Health Statistics (NCHS) death
data in SEER*Stat.
Source of death trend data: National Cancer Institute (NCI)/CDC State Cancer Profiles.
Incidence rates and trends summary
Overall, the breast cancer incidence rate in the Komen Lexington service area was slightly lower
than that observed in the US as a whole and the incidence trend was lower than the US as a
whole. The incidence rate and trend of the Affiliate service area were not significantly different
than that observed for the Commonwealth of Kentucky.
For the United States, breast cancer incidence in Blacks/African-Americans is lower than in
Whites overall. The most recent estimated breast cancer incidence rates for Asians and Pacific
Islanders (APIs) and American Indians and Alaska Natives (AIANs) were lower than for NonHispanic Whites and Blacks/African-Americans. The most recent estimated incidence rates for
Hispanics/Latinas were lower than for Non-Hispanic Whites and Blacks/African-Americans. For
the Affiliate service area as a whole, the incidence rate was higher among Blacks/AfricanAmericans than Whites. There were not enough data available within the Affiliate service area to
report on APIs and AIANs so comparisons cannot be made for these racial groups. The
incidence rate among Hispanics/Latinas was lower than among Non-Hispanics/Latinas.
The following counties had an incidence rate significantly higher than the Affiliate service area
as a whole:
• Fayette County
• Franklin County
The incidence rate was significantly lower in the following counties:
• Lincoln County
• Morgan County
• Perry County
• Russell County
Significantly more favorable trends in breast cancer incidence rates were observed in the
following county:
• Bell County
The rest of the counties had incidence rates and trends that were not significantly different than
the Affiliate service area as a whole or did not have enough data available.
It’s important to remember that an increase in breast cancer incidence could also mean that
more breast cancers are being found because more women are getting mammograms.
Death rates and trends summary
Overall, the breast cancer death rate in the Komen Lexington service area was slightly higher
than that observed in the US as a whole and the death rate trend was not available for
comparison with the US as a whole. The death rate of the Affiliate service area was not
significantly different than that observed for the Commonwealth of Kentucky.
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28 | P a g e
For the United States, breast cancer death rates in Blacks/African-Americans are substantially
higher than in Whites overall. The most recent estimated breast cancer death rates for APIs and
AIANs were lower than for Non-Hispanic Whites and Blacks/African-Americans. The most
recent estimated death rates for Hispanics/Latinas were lower than for Non-Hispanic Whites
and Blacks/African-Americans. For the Affiliate service area as a whole, the death rate was
higher among Blacks/African-Americans than Whites. There were not enough data available
within the Affiliate service area to report on APIs and AIANs so comparisons cannot be made for
these racial groups. Also, there were not enough data available within the Affiliate service area
to report on Hispanics/Latinas so comparisons cannot be made for this group.
The death rate was significantly lower in the following county:
• Pulaski County
The following county had a significantly less favorable breast cancer death rate trend than the
Affiliate service area as a whole:
• Johnson County
The rest of the counties had death rates and trends that were not significantly different than the
Affiliate service area as a whole or did not have enough data available.
Late-stage incidence rates and trends summary
Overall, the breast cancer late-stage incidence rate in the Komen Lexington service area was
similar to that observed in the US as a whole and the late-stage incidence trend was lower than
the US as a whole. The late-stage incidence rate and trend of the Affiliate service area were not
significantly different than that observed for the Commonwealth of Kentucky.
For the United States, late-stage incidence rates in Blacks/African-Americans are higher than
among Whites. Hispanics/Latinas tend to be diagnosed with late-stage breast cancers more
often than Whites. For the Affiliate service area as a whole, the late-stage incidence rate was
higher among Blacks/African-Americans than Whites. There were not enough data available
within the Affiliate service area to report on APIs and AIANs so comparisons cannot be made for
these racial groups. Also, there were not enough data available within the Affiliate service area
to report on Hispanics/Latinas so comparisons cannot be made for this group.
None of the counties in the Affiliate service area had substantially different late-stage incidence
rates than the Affiliate service area as a whole or did not have enough data available.
Mammography Screening
Getting regular screening mammograms (and treatment if diagnosed) lowers the risk of dying
from breast cancer. Screening mammography can find breast cancer early, when the chances
of survival are highest. Table 2.2 shows some screening recommendations among major
organizations for women at average risk.
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29 | P a g e
Table 2.2. Breast cancer screening recommendations
for women at average risk*
American Cancer Society
National Comprehensive
Cancer Network
Informed decision-making
with a health care provider
at age 40
Mammography every year
starting
at age 45
Mammography every year
starting
at age 40
US Preventive Services
Task Force
Informed decision-making
with a health care provider
ages 40-49
Mammography every 2 years
ages 50-74
Mammography every other
year beginning at age 55
*As of October 2015
Because having regular mammograms lowers the chances of dying from breast cancer, it’s
important to know whether women are having mammograms when they should. This
information can be used to identify groups of women who should be screened who need help in
meeting the current recommendations for screening mammography. The Centers for Disease
Control and Prevention’s (CDC) Behavioral Risk Factors Surveillance System (BRFSS)
collected the data on mammograms that are used in this report. The data come from interviews
with women age 50 to 74 from across the United States. During the interviews, each woman
was asked how long it has been since she has had a mammogram. The proportions in Table
2.3 are based on the number of women age 50 to 74 who reported in 2012 having had a
mammogram in the last two years.
The data have been weighted to account for differences between the women who were
interviewed and all the women in the area. For example, if 20.0 percent of the women
interviewed are Hispanic/Latina, but only 10.0 percent of the total women in the area are
Hispanic/Latina, weighting is used to account for this difference.
The report uses the mammography screening proportion to show whether the women in an area
are getting screening mammograms when they should. Mammography screening proportion is
calculated from two pieces of information:
 The number of women living in an area whom the BRFSS determines should have
mammograms (i.e. women age 50 to 74).
 The number of these women who actually had a mammogram during the past two years.
The number of women who had a mammogram is divided by the number who should have had
one. For example, if there are 500 women in an area who should have had mammograms and
250 of those women actually had a mammogram in the past two years, the mammography
screening proportion is 50.0 percent.
Because the screening proportions come from samples of women in an area and are not exact,
Table 2.3 includes confidence intervals. A confidence interval is a range of values that gives an
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30 | P a g e
idea of how uncertain a value may be. It’s shown as two numbers—a lower value and a higher
one. It is very unlikely that the true rate is less than the lower value or more than the higher
value.
For example, if screening proportion was reported as 50.0 percent, with a confidence interval of
35.0 to 65.0 percent, the real rate might not be exactly 50.0 percent, but it’s very unlikely that it’s
less than 35.0 or more than 65.0 percent.
In general, screening proportions at the county level have fairly wide confidence intervals. The
confidence interval should always be considered before concluding that the screening
proportion in one county is higher or lower than that in another county.
Table 2.3. Proportion of women ages 50-74 with screening mammography
in the last two years, self-report
Population Group
US
# of Women
Interviewed
(Sample Size)
Proportion
Screened
(Weighted
Average)
# w/ SelfReported
Mammogram
Confidence
Interval of
Proportion
Screened
174,796
133,399
77.5%
77.2%-77.7%
Kentucky
4,570
3,422
74.6%
72.9%-76.3%
Komen Lexington Service Area
1,496
1,074
73.9%
70.9%-76.7%
1,439
1,031
73.7%
70.6%-76.5%
32
27
85.4%
59.4%-95.9%
AIAN
16
10
42.5%
14.3%-76.6%
API
SN
SN
SN
SN
Hispanic/ Latina
20
15
81.3%
37.1%-97.0%
1,452
1,041
73.7%
70.6%-76.6%
Adair County - KY
16
12
74.2%
39.7%-92.6%
13
12
86.3%
53.8%-97.1%
Bath County - KY
SN
SN
SN
SN
Bell County - KY
36
23
58.5%
38.4%-76.1%
Bourbon County - KY
SN
SN
SN
SN
Boyd County - KY
95
71
71.4%
59.1%-81.1%
Boyle County - KY
12
9
81.0%
45.0%-95.7%
30
17
50.1%
29.9%-70.2%
Carter County - KY
52
29
58.2%
40.2%-74.2%
Casey County - KY
15
9
49.0%
18.6%-80.1%
Clark County - KY
13
9
65.3%
32.0%-88.3%
Clay County - KY
16
11
55.8%
26.7%-81.4%
Clinton County - KY
SN
SN
SN
SN
SN
SN
SN
SN
Elliott County - KY
SN
SN
SN
SN
Estill County - KY
SN
SN
SN
SN
Fayette County - KY
110
90
86.3%
76.0%-92.6%
White
Non-Hispanic/ Latina
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31 | P a g e
Population Group
# of Women
Interviewed
(Sample Size)
Proportion
Screened
(Weighted
Average)
# w/ SelfReported
Mammogram
Confidence
Interval of
Proportion
Screened
Floyd County - KY
61
41
54.7%
38.7%-69.8%
22
16
75.3%
49.8%-90.4%
Garrard County - KY
12
11
82.1%
48.9%-95.7%
Green County - KY
SN
SN
SN
SN
Greenup County - KY
71
49
70.9%
55.6%-82.5%
Harlan County - KY
38
26
60.6%
40.4%-77.7%
13
8
62.5%
33.1%-84.9%
Jackson County - KY
14
10
55.2%
24.4%-82.4%
14
9
68.4%
39.0%-87.9%
Johnson County - KY
27
16
59.4%
35.2%-79.8%
Knott County - KY
30
23
74.1%
49.0%-89.5%
Knox County - KY
34
25
77.5%
54.8%-90.8%
Laurel County - KY
56
42
68.5%
51.9%-81.4%
24
16
64.3%
39.1%-83.4%
Lee County - KY
SN
SN
SN
SN
Leslie County - KY
SN
SN
SN
SN
Letcher County - KY
54
39
73.0%
54.0%-86.2%
Lincoln County - KY
15
10
57.5%
29.8%-81.2%
19
7
26.5%
9.8%-54.4%
Madison County - KY
29
23
85.9%
65.8%-95.0%
11
10
98.3%
64.1%-99.9%
Martin County - KY
SN
SN
SN
SN
Menifee County - KY
SN
SN
SN
SN
Mercer County - KY
SN
SN
SN
SN
78
57
67.0%
50.0%-80.5%
Morgan County - KY
42
24
56.1%
35.8%-74.5%
SN
SN
SN
SN
Owsley County - KY
SN
SN
SN
SN
14
8
59.7%
27.4%-85.3%
Perry County - KY
66
46
66.8%
52.7%-78.4%
Pike County - KY
93
74
85.7%
74.1%-92.6%
Powell County - KY
SN
SN
SN
SN
Pulaski County - KY
72
54
76.7%
61.7%-87.0%
16
13
84.8%
55.0%-96.2%
Russell County - KY
20
15
76.7%
49.9%-91.6%
Scott County - KY
16
14
91.6%
66.1%-98.4%
Taylor County - KY
32
27
85.1%
61.9%-95.2%
Wayne County - KY
28
20
71.6%
47.2%-87.7%
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32 | P a g e
Population Group
# of Women
Interviewed
(Sample Size)
# w/ SelfReported
Mammogram
Proportion
Screened
(Weighted
Average)
Confidence
Interval of
Proportion
Screened
Whitley County - KY
37
28
77.5%
52.9%-91.3%
Wolfe County - KY
SN
SN
SN
SN
SN
SN
SN
SN
SN – data suppressed due to small numbers (fewer than 10 samples).
Data are for 2012.
Source: CDC – Behavioral Risk Factor Surveillance System (BRFSS).
Breast cancer screening proportions summary
The breast cancer screening proportion in the Komen Lexington service area was significantly
lower than that observed in the US as a whole. The screening proportion of the Affiliate service
area was not significantly different than the Commonwealth of Kentucky.
For the United States, breast cancer screening proportions among Blacks/African-Americans
are similar to those among Whites overall. APIs have somewhat lower screening proportions
than Whites and Blacks/African-Americans. Although data are limited, screening proportions
among AIANs are similar to those among Whites. Screening proportions among
Hispanics/Latinas are similar to those among Non-Hispanic Whites and Blacks/AfricanAmericans. For the Affiliate service area as a whole, the screening proportion was not
significantly different among Blacks/African-Americans than Whites and not significantly
different among AIANs than Whites. There were not enough data available within the Affiliate
service area to report on APIs so comparisons cannot be made for this racial group. The
screening proportion among Hispanics/Latinas was not significantly different than among NonHispanics/Latinas.
The following counties had a screening proportion significantly lower than the Affiliate service
area as a whole:
• Breathitt County
• Floyd County
• McCreary County
The remaining counties had screening proportions that were not significantly different than the
Affiliate service area as a whole.
Population Characteristics
The report includes basic information about the women in each area (demographic measures)
and about factors like education, income, and unemployment (socioeconomic measures) in the
areas where they live (Tables 2.4 and 2.5). Demographic and socioeconomic data can be used
to identify which groups of women are most in need of help and to figure out the best ways to
help them.
It is important to note that the report uses the race and ethnicity categories used by the US
Census Bureau, and that race and ethnicity are separate and independent categories. This
means that everyone is classified as both a member of one of the four race groups as well as
either Hispanic/Latina or Non-Hispanic/Latina.
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33 | P a g e
The demographic and socioeconomic data in this report are the most recent data available for
US counties. All the data are shown as percentages. However, the percentages weren’t all
calculated in the same way.
 The race, ethnicity, and age data are based on the total female population in the area
(e.g., the percent of females over the age of 40).
 The socioeconomic data are based on all the people in the area, not just women.
 Income, education, and unemployment data don’t include children. They’re based on
people age 15 and older for income and unemployment, and age 25 and older for
education.
 The data on the use of English, called “linguistic isolation”, are based on the total
number of households in the area. The Census Bureau defines a linguistically isolated
household as one in which all the adults have difficulty with English.
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34 | P a g e
Table 2.4. Population characteristics – demographics
Population Group
White
Black
/AfricanAmerican
AIAN
API
NonHispanic
/Latina
Hispanic
/Latina
Female
Age
40 Plus
Female
Age
50 Plus
Female
Age
65 Plus
US
78.8 %
14.1 %
1.4 %
5.8 %
83.8 %
16.2 %
48.3 %
34.5 %
14.8 %
Kentucky
89.8 %
8.5 %
0.3 %
1.4 %
97.2 %
2.8 %
49.4 %
35.6 %
15.2 %
Komen Lexington Service Area
93.7 %
4.9 %
0.3 %
1.1 %
97.7 %
2.3 %
49.8 %
35.9 %
15.3 %
Adair County - KY
96.7 %
2.7 %
0.2 %
0.4 %
98.5 %
1.5 %
50.8 %
37.2 %
16.8 %
96.4 %
2.9 %
0.1 %
0.6 %
98.8 %
1.2 %
49.3 %
33.7 %
13.6 %
Bath County - KY
97.6 %
1.9 %
0.2 %
0.3 %
98.9 %
1.1 %
50.9 %
36.9 %
16.2 %
Bell County - KY
97.1 %
2.4 %
0.1 %
0.4 %
99.3 %
0.7 %
53.5 %
39.5 %
18.1 %
Bourbon County - KY
92.5 %
6.8 %
0.3 %
0.4 %
94.8 %
5.2 %
53.2 %
38.4 %
17.0 %
Boyd County - KY
97.3 %
1.9 %
0.2 %
0.6 %
98.9 %
1.1 %
54.8 %
41.6 %
19.3 %
Boyle County - KY
91.4 %
7.4 %
0.2 %
1.0 %
97.4 %
2.6 %
53.4 %
39.7 %
18.6 %
99.0 %
0.3 %
0.1 %
0.6 %
99.3 %
0.7 %
52.2 %
37.7 %
15.6 %
Carter County - KY
98.9 %
0.6 %
0.2 %
0.3 %
98.9 %
1.1 %
51.5 %
37.3 %
16.8 %
Casey County - KY
98.4 %
1.0 %
0.3 %
0.3 %
97.8 %
2.2 %
51.9 %
38.8 %
17.9 %
Clark County - KY
93.9 %
5.4 %
0.2 %
0.5 %
97.9 %
2.1 %
52.5 %
38.2 %
16.2 %
Clay County - KY
98.2 %
1.6 %
0.1 %
0.2 %
99.3 %
0.7 %
49.6 %
35.5 %
15.1 %
Clinton County - KY
98.7 %
0.5 %
0.2 %
0.5 %
98.2 %
1.8 %
53.8 %
39.6 %
18.3 %
96.6 %
3.1 %
0.1 %
0.1 %
98.9 %
1.1 %
55.4 %
41.0 %
20.0 %
Elliott County - KY
99.6 %
0.3 %
0.0 %
0.1 %
99.3 %
0.7 %
53.2 %
39.5 %
17.5 %
Estill County - KY
99.0 %
0.5 %
0.3 %
0.1 %
99.3 %
0.7 %
53.7 %
38.8 %
16.9 %
Fayette County - KY
80.2 %
15.7 %
0.4 %
3.7 %
94.1 %
5.9 %
43.2 %
30.6 %
12.3 %
Floyd County - KY
98.7 %
1.0 %
0.1 %
0.2 %
99.4 %
0.6 %
52.2 %
37.9 %
15.3 %
87.1 %
11.0 %
0.3 %
1.6 %
97.6 %
2.4 %
52.0 %
38.2 %
16.1 %
Garrard County - KY
97.2 %
2.2 %
0.2 %
0.4 %
97.9 %
2.1 %
53.7 %
38.8 %
16.7 %
Green County - KY
97.1 %
2.3 %
0.3 %
0.3 %
98.7 %
1.3 %
55.1 %
41.3 %
19.3 %
Greenup County - KY
98.2 %
0.9 %
0.3 %
0.6 %
99.2 %
0.8 %
55.4 %
41.3 %
19.0 %
Harlan County - KY
97.0 %
2.5 %
0.2 %
0.4 %
99.3 %
0.7 %
52.3 %
38.8 %
16.1 %
97.0 %
2.4 %
0.2 %
0.4 %
98.7 %
1.3 %
53.3 %
38.6 %
17.1 %
Jackson County - KY
99.3 %
0.3 %
0.1 %
0.3 %
99.3 %
0.7 %
51.0 %
36.4 %
14.8 %
94.9 %
3.6 %
0.3 %
1.3 %
97.6 %
2.4 %
45.9 %
31.7 %
12.3 %
Johnson County - KY
98.9 %
0.4 %
0.1 %
0.5 %
99.5 %
0.5 %
52.4 %
37.6 %
15.6 %
Knott County - KY
98.8 %
0.9 %
0.1 %
0.1 %
99.5 %
0.5 %
52.5 %
37.5 %
15.3 %
Knox County - KY
98.3 %
1.2 %
0.2 %
0.2 %
99.0 %
1.0 %
50.0 %
36.4 %
16.4 %
Laurel County - KY
98.0 %
1.0 %
0.4 %
0.6 %
98.8 %
1.2 %
49.4 %
34.8 %
14.5 %
99.1 %
0.5 %
0.2 %
0.2 %
99.5 %
0.5 %
51.8 %
37.8 %
15.6 %
Lee County - KY
98.8 %
0.7 %
0.3 %
0.2 %
99.3 %
0.7 %
54.2 %
38.7 %
16.4 %
Leslie County - KY
99.5 %
0.3 %
0.1 %
0.1 %
99.7 %
0.3 %
52.6 %
38.0 %
16.0 %
Letcher County - KY
99.2 %
0.5 %
0.1 %
0.2 %
99.5 %
0.5 %
53.4 %
39.4 %
16.1 %
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Population Group
White
Black
/AfricanAmerican
AIAN
API
NonHispanic
/Latina
Hispanic
/Latina
Female
Age
40 Plus
Female
Age
50 Plus
Female
Age
65 Plus
Lincoln County - KY
96.8 %
2.8 %
0.2 %
0.3 %
98.4 %
1.6 %
51.5 %
36.9 %
16.7 %
98.6 %
0.8 %
0.4 %
0.2 %
99.4 %
0.6 %
49.2 %
35.1 %
14.9 %
Madison County - KY
93.4 %
5.0 %
0.4 %
1.2 %
98.1 %
1.9 %
43.4 %
30.6 %
12.8 %
99.2 %
0.3 %
0.3 %
0.1 %
99.2 %
0.8 %
50.8 %
35.6 %
14.2 %
Martin County - KY
99.2 %
0.4 %
0.2 %
0.2 %
99.5 %
0.5 %
51.1 %
35.8 %
14.4 %
Menifee County - KY
98.4 %
1.3 %
0.0 %
0.3 %
99.3 %
0.7 %
53.2 %
40.0 %
17.8 %
Mercer County - KY
94.9 %
4.2 %
0.3 %
0.6 %
97.9 %
2.1 %
55.1 %
40.4 %
18.2 %
95.9 %
3.4 %
0.2 %
0.5 %
97.8 %
2.2 %
49.2 %
34.8 %
14.4 %
Morgan County - KY
99.0 %
0.4 %
0.2 %
0.3 %
99.6 %
0.4 %
51.9 %
38.2 %
15.9 %
98.9 %
0.7 %
0.1 %
0.4 %
98.7 %
1.3 %
52.2 %
38.2 %
17.1 %
Owsley County - KY
98.8 %
0.8 %
0.3 %
0.1 %
99.2 %
0.8 %
53.4 %
39.7 %
16.9 %
98.6 %
0.7 %
0.3 %
0.4 %
99.0 %
1.0 %
50.6 %
35.5 %
14.2 %
Perry County - KY
97.6 %
1.7 %
0.1 %
0.6 %
99.4 %
0.6 %
51.9 %
37.4 %
14.7 %
Pike County - KY
98.7 %
0.7 %
0.1 %
0.5 %
99.3 %
0.7 %
53.0 %
38.5 %
15.8 %
Powell County - KY
98.7 %
0.8 %
0.1 %
0.3 %
99.1 %
0.9 %
49.2 %
35.7 %
14.7 %
Pulaski County - KY
97.6 %
1.5 %
0.3 %
0.6 %
98.1 %
1.9 %
53.4 %
39.4 %
17.9 %
99.0 %
0.6 %
0.3 %
0.1 %
99.3 %
0.7 %
51.8 %
37.2 %
16.3 %
Russell County - KY
98.4 %
0.9 %
0.3 %
0.4 %
97.2 %
2.8 %
54.6 %
40.6 %
19.2 %
Scott County - KY
92.9 %
5.6 %
0.4 %
1.1 %
96.3 %
3.7 %
43.8 %
28.9 %
10.6 %
Taylor County - KY
94.2 %
5.0 %
0.2 %
0.7 %
98.2 %
1.8 %
51.9 %
38.7 %
18.0 %
Wayne County - KY
97.5 %
1.6 %
0.3 %
0.5 %
97.4 %
2.6 %
53.5 %
40.2 %
17.9 %
Whitley County - KY
98.4 %
0.8 %
0.3 %
0.4 %
99.0 %
1.0 %
49.3 %
35.9 %
16.0 %
Wolfe County - KY
99.5 %
0.2 %
0.3 %
0.0 %
99.6 %
0.4 %
52.1 %
38.5 %
17.2 %
93.5 %
5.5 %
0.2 %
0.8 %
94.7 %
5.3 %
53.3 %
37.9 %
14.7 %
Data are for 2011.
Data are in the percentage of women in the population.
Source: US Census Bureau – Population Estimates
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36 | P a g e
Table 2.5. Population characteristics – socioeconomics
Population Group
Less than
HS
Education
Income
Below
100%
Poverty
Income
Below
250%
Poverty
(Age:
40-64)
Unemployed
Foreign
Born
Linguistically
Isolated
In Rural
Areas
In
Medically
Underserved
Areas
No Health
Insurance
(Age:
40-64)
US
14.6 %
14.3 %
33.3 %
8.7 %
12.8 %
4.7 %
19.3 %
23.3 %
16.6 %
Kentucky
18.3 %
18.1 %
39.3 %
8.9 %
3.1 %
1.1 %
41.6 %
37.7 %
15.8 %
Komen Lexington Service
Area
22.6 %
21.9 %
44.5 %
9.5 %
2.6 %
0.9 %
52.8 %
44.6 %
16.6 %
Adair County - KY
28.8 %
19.9 %
54.7 %
12.7 %
0.8 %
0.2 %
75.5 %
0.0 %
21.7 %
13.4 %
13.3 %
31.5 %
7.8 %
1.3 %
0.3 %
41.7 %
0.0 %
14.3 %
Bath County - KY
27.5 %
29.6 %
55.4 %
14.0 %
0.9 %
0.0 %
100.0 %
100.0 %
18.8 %
Bell County - KY
34.9 %
32.5 %
62.5 %
11.8 %
0.3 %
0.0 %
62.5 %
0.0 %
17.6 %
Bourbon County - KY
17.5 %
16.4 %
42.1 %
10.1 %
4.6 %
1.9 %
44.7 %
0.0 %
19.4 %
Boyd County - KY
15.1 %
19.1 %
39.2 %
9.9 %
1.3 %
0.2 %
25.3 %
2.8 %
14.7 %
Boyle County - KY
15.1 %
17.4 %
38.3 %
8.4 %
2.9 %
0.6 %
34.8 %
0.0 %
14.9 %
35.2 %
30.0 %
58.5 %
9.8 %
0.5 %
0.3 %
81.5 %
100.0 %
15.7 %
Carter County - KY
26.1 %
17.8 %
49.2 %
8.3 %
0.3 %
0.1 %
79.4 %
100.0 %
17.5 %
Casey County - KY
34.6 %
27.3 %
59.2 %
6.9 %
0.8 %
1.2 %
100.0 %
100.0 %
22.2 %
Clark County - KY
18.9 %
16.6 %
35.8 %
8.7 %
1.5 %
0.7 %
27.5 %
0.0 %
14.9 %
Clay County - KY
40.3 %
36.5 %
66.2 %
26.1 %
0.9 %
0.0 %
78.6 %
100.0 %
16.6 %
Clinton County - KY
36.7 %
25.7 %
61.0 %
8.2 %
0.9 %
0.4 %
100.0 %
100.0 %
19.3 %
27.6 %
23.8 %
58.7 %
11.0 %
0.1 %
0.0 %
100.0 %
100.0 %
20.4 %
Elliott County - KY
28.3 %
31.9 %
56.3 %
12.4 %
0.5 %
0.0 %
100.0 %
100.0 %
18.7 %
Estill County - KY
29.5 %
27.3 %
55.6 %
13.5 %
0.1 %
0.0 %
76.1 %
0.0 %
18.1 %
Fayette County - KY
11.5 %
17.9 %
30.0 %
7.2 %
8.5 %
2.9 %
3.1 %
19.8 %
15.6 %
Floyd County - KY
31.2 %
27.3 %
55.7 %
9.5 %
0.4 %
0.2 %
83.9 %
0.0 %
17.1 %
14.5 %
14.5 %
30.2 %
8.5 %
3.0 %
1.3 %
27.6 %
0.0 %
14.2 %
Garrard County - KY
20.5 %
20.9 %
43.7 %
12.6 %
1.2 %
0.3 %
77.9 %
100.0 %
18.9 %
Green County - KY
23.9 %
18.3 %
52.2 %
9.1 %
1.1 %
0.0 %
100.0 %
0.0 %
19.8 %
Greenup County - KY
20.2 %
16.1 %
39.9 %
9.1 %
1.1 %
0.1 %
39.3 %
100.0 %
16.9 %
Harlan County - KY
30.9 %
31.1 %
55.1 %
9.6 %
0.3 %
0.4 %
54.2 %
100.0 %
17.0 %
19.8 %
19.9 %
41.0 %
9.7 %
1.3 %
0.5 %
65.9 %
15.0 %
16.4 %
Jackson County - KY
36.9 %
35.6 %
61.1 %
13.5 %
0.1 %
0.0 %
100.0 %
100.0 %
19.2 %
15.3 %
16.3 %
34.9 %
7.8 %
3.3 %
1.1 %
25.9 %
0.0 %
16.4 %
Johnson County - KY
30.1 %
21.5 %
50.4 %
8.2 %
0.5 %
0.0 %
73.0 %
38.7 %
16.5 %
Knott County - KY
32.2 %
24.5 %
52.3 %
9.0 %
0.6 %
0.9 %
100.0 %
100.0 %
15.9 %
Knox County - KY
35.1 %
36.4 %
59.1 %
15.9 %
0.6 %
0.4 %
62.9 %
100.0 %
15.9 %
Laurel County - KY
26.1 %
20.6 %
48.7 %
11.4 %
1.2 %
0.4 %
56.8 %
0.0 %
17.9 %
29.0 %
25.8 %
51.0 %
10.8 %
0.5 %
1.0 %
77.1 %
56.2 %
16.8 %
Lee County - KY
31.5 %
31.5 %
59.7 %
9.9 %
1.1 %
0.0 %
100.0 %
100.0 %
16.6 %
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37 | P a g e
Population Group
Less than
HS
Education
Income
Below
100%
Poverty
Income
Below
250%
Poverty
(Age:
40-64)
Unemployed
Foreign
Born
Linguistically
Isolated
In Rural
Areas
In
Medically
Underserved
Areas
No Health
Insurance
(Age:
40-64)
Leslie County - KY
41.3 %
23.2 %
51.8 %
7.0 %
0.3 %
0.0 %
100.0 %
100.0 %
15.3 %
Letcher County - KY
29.9 %
26.0 %
49.2 %
10.0 %
0.4 %
0.0 %
100.0 %
100.0 %
16.2 %
Lincoln County - KY
26.6 %
23.4 %
50.1 %
10.6 %
0.2 %
0.0 %
81.7 %
100.0 %
18.4 %
30.2 %
30.9 %
67.2 %
16.1 %
1.0 %
0.4 %
100.0 %
0.0 %
21.3 %
Madison County - KY
15.8 %
20.3 %
37.9 %
8.8 %
2.4 %
1.2 %
38.5 %
100.0 %
15.6 %
35.3 %
30.1 %
55.1 %
10.8 %
0.0 %
0.0 %
100.0 %
100.0 %
21.4 %
Martin County - KY
32.9 %
37.6 %
56.8 %
12.1 %
1.1 %
0.0 %
100.0 %
100.0 %
14.4 %
Menifee County - KY
31.5 %
27.8 %
58.9 %
11.0 %
0.5 %
0.7 %
100.0 %
100.0 %
21.9 %
Mercer County - KY
16.8 %
13.7 %
36.8 %
11.0 %
0.9 %
0.3 %
59.1 %
0.0 %
15.4 %
23.3 %
23.2 %
44.1 %
8.8 %
1.1 %
0.1 %
59.1 %
100.0 %
16.4 %
Morgan County - KY
30.2 %
25.8 %
53.4 %
7.8 %
0.6 %
1.0 %
100.0 %
100.0 %
18.6 %
25.2 %
18.1 %
49.3 %
5.3 %
0.5 %
1.1 %
100.0 %
0.0 %
19.5 %
Owsley County - KY
43.9 %
39.3 %
67.8 %
17.8 %
0.1 %
0.0 %
100.0 %
100.0 %
18.4 %
19.9 %
17.9 %
38.9 %
9.0 %
0.0 %
0.0 %
100.0 %
0.0 %
15.1 %
Perry County - KY
30.1 %
26.4 %
50.0 %
8.6 %
0.5 %
0.0 %
74.1 %
7.1 %
15.3 %
Pike County - KY
29.5 %
22.2 %
50.0 %
8.1 %
0.9 %
0.3 %
87.8 %
15.4 %
16.3 %
Powell County - KY
28.2 %
28.7 %
54.4 %
10.0 %
0.4 %
0.0 %
67.1 %
100.0 %
17.7 %
Pulaski County - KY
22.6 %
23.2 %
48.5 %
8.2 %
1.4 %
0.8 %
53.9 %
100.0 %
17.5 %
30.9 %
29.2 %
55.8 %
10.4 %
0.0 %
0.0 %
83.7 %
100.0 %
19.2 %
Russell County - KY
27.1 %
23.0 %
52.4 %
8.8 %
2.2 %
0.3 %
100.0 %
0.0 %
18.2 %
Scott County - KY
13.2 %
13.4 %
28.0 %
8.6 %
2.5 %
0.5 %
32.5 %
100.0 %
12.0 %
Taylor County - KY
25.0 %
21.4 %
48.0 %
10.2 %
1.7 %
1.0 %
52.2 %
22.8 %
17.2 %
Wayne County - KY
31.4 %
27.6 %
59.6 %
14.9 %
1.1 %
0.9 %
67.7 %
100.0 %
20.0 %
Whitley County - KY
28.7 %
26.8 %
57.7 %
10.3 %
0.7 %
0.1 %
65.2 %
0.0 %
16.7 %
Wolfe County - KY
41.5 %
42.1 %
64.1 %
8.3 %
0.4 %
0.0 %
100.0 %
100.0 %
17.3 %
12.0 %
13.4 %
26.3 %
6.4 %
6.2 %
1.7 %
36.2 %
0.0 %
14.8 %
Data are in the percentage of people (men and women) in the population.
Source of health insurance data: US Census Bureau – Small Area Health Insurance Estimates (SAHIE) for 2011.
Source of rural population data: US Census Bureau – Census 2010.
Source of medically underserved data: Health Resources and Services Administration (HRSA) for 2013.
Source of other data: US Census Bureau – American Community Survey (ACS) for 2007-2011.
Population characteristics summary
Proportionately, the Komen Lexington service area has a substantially larger White female
population than the US as a whole, a substantially smaller Black/African-American female
population, a substantially smaller Asian and Pacific Islander (API) female population, a slightly
smaller American Indian and Alaska Native (AIAN) female population, and a substantially
smaller Hispanic/Latina female population. The Affiliate’s female population is slightly older than
that of the US as a whole. The Affiliate’s education level is substantially lower than and income
level is substantially lower than those of the US as a whole. There are a slightly larger
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38 | P a g e
percentage of people who are unemployed in the Affiliate service area. The Affiliate service area
has a substantially smaller percentage of people who are foreign born and a substantially
smaller percentage of people who are linguistically isolated. There are a substantially larger
percentage of people living in rural areas and a substantially larger percentage of people living
in medically underserved areas.
The following counties have substantially larger Black/African-American female population
percentages than that of the Affiliate service area as a whole:
• Fayette County
• Franklin County
The following counties have substantially lower education levels than that of the Affiliate service
area as a whole:
• Adair County
• Bell County
• Casey County
• Clay County
• Clinton County
• Elliott County
• Estill County
• Floyd County
• Harlan County
• Jackson County
• Johnson County
• Knott County
• Knox County
• Lawrence County
• Lee County
• Leslie County
• Letcher County
• McCreary County
• Magoffin County
• Martin County
• Menifee County
• Morgan County
• Owsley County
• Perry County
• Pike County
• Powell County
• Rockcastle County
• Wayne County
• Whitley County
• Wolfe County
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39 | P a g e
The following counties have substantially lower income levels than that of the Affiliate service
area as a whole:
• Bath County
• Bell County
• Casey County
• Clay County
• Elliott County
• Estill County
• Floyd County
• Harlan County
• Jackson County
• Knox County
• Lee County
• McCreary County
• Magoffin County
• Martin County
• Menifee County
• Owsley County
• Powell County
• Rockcastle County
• Wayne County
• Wolfe County
The following counties have substantially lower employment levels than that of the Affiliate
service area as a whole:
• Adair County
• Bath County
• Clay County
• Estill County
• Garrard County
• Jackson County
• Knox County
• McCreary County
• Owsley County
• Wayne County
The following counties have substantially larger percentage of adults without health insurance
than does the Affiliate service area as a whole:
• Adair County
• Casey County
• Menifee County
Priority Areas
Healthy People 2020 forecasts
Healthy People 2020 (HP2020) is a major federal government initiative that provides specific
health objectives for communities and for the country as a whole. Many national health
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40 | P a g e
organizations use HP2020 targets to monitor progress in reducing the burden of disease and
improve the health of the nation. Likewise, Komen believes it is important to refer to HP2020 to
see how areas across the country are progressing towards reducing the burden of breast
cancer.
HP2020 has several cancer-related objectives, including:
 Reducing women’s death rate from breast cancer (Target as of the writing of this report:
41.0 cases per 100,000 women).
 Reducing the number of breast cancers that are found at a late-stage (Target as of the
writing of this report: 41.0 cases per 100,000 women).
To see how well counties in the Komen Lexington service area are progressing toward these
targets, the report uses the following information:
 County breast cancer death rate and late-stage diagnosis data for years 2006 to 2010.
 Estimates for the trend (annual percent change) in county breast cancer death rates and
late-stage diagnoses for years 2006 to 2010.
 Both the data and the HP2020 target are age-adjusted.
These data are used to estimate how many years it will take for each county to meet the
HP2020 objectives. Because the target date for meeting the objective is 2020, and 2008 (the
middle of the 2006-2010 period) was used as a starting point, a county has 12 years to meet the
target.
Death rate and late-stage diagnosis data and trends are used to calculate whether an area will
meet the HP2020 target, assuming that the trend seen in years 2006 to 2010 continues for 2011
and beyond.
Identification of priority areas
The purpose of this report is to combine evidence from many credible sources and use the data
to identify the highest priority areas for breast cancer programs (i.e. the areas of greatest need).
Classification of priority areas are based on the time needed to achieve HP2020 targets in each
area. These time projections depend on both the starting point and the trends in death rates and
late-stage incidence.
Late-stage incidence reflects both the overall breast cancer incidence rate in the population and
the mammography screening coverage. The breast cancer death rate reflects the access to
care and the quality of care in the health care delivery area, as well as cancer stage at
diagnosis.
There has not been any indication that either one of the two HP2020 targets is more important
than the other. Therefore, the report considers them equally important.
Counties are classified as follows (Table 2.6):
 Counties that are not likely to achieve either of the HP2020 targets are considered to
have the highest needs.
 Counties that have already achieved both targets are considered to have the lowest
needs.
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41 | P a g e

Other counties are classified based on the number of years needed to achieve the two
targets.
Table 2.6. Needs/priority classification based on the projected time to achieve
HP2020 breast cancer targets
Time to Achieve
Death Rate
Reduction Target
13 years or
longer
7-12 yrs.
0 – 6 yrs.
Currently
meets target
Unknown
Time to Achieve Late-stage Incidence Reduction Target
13 years or 7-12 yrs.
0 – 6 yrs.
Currently
Unknown
longer
meets target
Medium
Highest
Highest
High
Medium
High
Medium
Medium
Medium
High
Medium
High
Low
High
Medium
Medium
Medium
Medium
Low
High
Low
Low
Medium
Lowest
Lowest
Medium
Low
Low
Medium
Medium
Highest
Lowest
Unknown
High
Low
If the time to achieve a target cannot be calculated for one of the HP2020 indicators, then the
county is classified based on the other indicator. If both indicators are missing, then the county
is not classified. This doesn’t mean that the county may not have high needs; it only means that
sufficient data are not available to classify the county.
Affiliate Service Area Healthy People 2020 Forecasts and Priority Areas
The results presented in Table 2.7 help identify which counties have the greatest needs when it
comes to meeting the HP2020 breast cancer targets.
 For counties in the “13 years or longer” category, current trends would need to change to
achieve the target.
 Some counties may currently meet the target but their rates are increasing and they
could fail to meet the target if the trend is not reversed.
Trends can change for a number of reasons, including:
 Improved screening programs could lead to breast cancers being diagnosed earlier,
resulting in a decrease in both late-stage incidence rates and death rates.
 Improved socioeconomic conditions, such as reductions in poverty and linguistic
isolation could lead to more timely treatment of breast cancer, causing a decrease in
death rates.
The data in this table should be considered together with other information on factors that affect
breast cancer death rates such as screening percentages, and key breast cancer death
determinants such as poverty and linguistic isolation.
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42 | P a g e
Table 2.7. Intervention priorities for Komen Lexington service area with predicted time to
achieve the HP2020 breast cancer targets and key population characteristics
Predicted Time to
Predicted Time to
Achieve Death Rate Achieve Late-stage
Target
Incidence Target
Key Population
Characteristics
County
Priority
Adair County - KY
Highest
SN
13 years or longer
Boyle County - KY
Highest
13 years or longer
13 years or longer
Casey County - KY
Highest
SN
13 years or longer
Clark County - KY
Highest
13 years or longer
13 years or longer
Clay County - KY
Highest
NA
13 years or longer
Education, poverty,
employment, rural, medically
underserved
Floyd County - KY
Highest
13 years or longer
13 years or longer
Education, poverty, rural
Garrard County - KY
Highest
SN
13 years or longer
Employment, rural, medically
underserved
Highest
SN
13 years or longer
Rural
Johnson County - KY
Highest
13 years or longer
13 years or longer
Education, rural
Highest
SN
13 years or longer
Education, rural, medically
underserved
Leslie County - KY
Highest
SN
13 years or longer
underserved
Highest
SN
13 years or longer
Education, poverty, rural,
medically underserved
Perry County - KY
Highest
SN
13 years or longer
Education, rural
Scott County - KY
Highest
13 years or longer
13 years or longer
Medically underserved
Taylor County - KY
Highest
NA
13 years or longer
Wayne County - KY
Highest
13 years or longer
13 years or longer
Boyd County - KY
High
12 years
13 years or longer
Madison County - KY
High
10 years
13 years or longer
Fayette County - KY
Medium High
3 years
13 years or longer
%Black/African-American,
foreign
Medium High
13 years or longer
2 years
%Black/African-American
Harlan County - KY
Medium High
13 years or longer
1 year
Education, poverty, medically
underserved
®
Education, employment, rural,
insurance
insurance, medically
underserved
Education, poverty,
underserved
43 | P a g e
County
Priority
Predicted Time to
Predicted Time to
Target
Incidence Target
Key Population
Characteristics
Knox County - KY
Medium High
13 years or longer
2 years
Laurel County - KY
Medium High
2 years
13 years or longer
Letcher County - KY
Medium High
13 years or longer
1 year
underserved
Mercer County - KY
Medium High
13 years or longer
1 year
Rural
Pike County - KY
Medium High
13 years or longer
1 year
Education, rural
Powell County - KY
Medium High
SN
7 years
Bourbon County - KY
Medium
13 years or longer
Currently meets
target
Greenup County - KY
Medium
13 years or longer
Currently meets
target
Bath County - KY
Medium Low
SN
1 year
Poverty, employment, rural,
Medium Low
SN
3 years
Carter County - KY
Medium Low
NA
2 years
Rural, medically underserved
Clinton County - KY
Medium Low
SN
2 years
underserved
Estill County - KY
Medium Low
SN
2 years
Education, poverty,
employment, rural
Jackson County - KY
Medium Low
SN
3 years
Education, poverty,
underserved
Medium Low
NA
3 years
Knott County - KY
Medium Low
SN
1 year
underserved
Lincoln County - KY
Medium Low
NA
1 year
Medium Low
NA
5 years
Education, poverty,
employment, rural
Medium Low
3 years
2 years
Medium Low
SN
1 year
Rural
Medium Low
SN
4 years
Low
6 years
Currently meets
target
Education, poverty, rural
Bell County - KY
®
Education, poverty,
underserved
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County
Priority
Predicted Time to
Predicted Time to
Target
Incidence Target
Key Population
Characteristics
Pulaski County - KY
Low
Currently meets
target
1 year
Whitley County - KY
Low
Currently meets
target
2 years
Education, rural
Lowest
SN
Currently meets
target
Lowest
SN
Currently meets
target
Undetermined
SN
SN
Elliott County - KY
Undetermined
SN
SN
Green County - KY
Undetermined
SN
SN
Rural
Lee County - KY
Undetermined
SN
SN
Martin County - KY
Undetermined
SN
SN
Menifee County - KY
Undetermined
SN
SN
insurance, medically
underserved
Morgan County - KY
Undetermined
SN
SN
underserved
Undetermined
SN
SN
Rural
Owsley County - KY
Undetermined
SN
SN
Education, poverty,
underserved
Russell County - KY
Undetermined
SN
SN
Rural
Wolfe County - KY
Undetermined
SN
SN
NA – data not available.
SN – data suppressed due to small numbers (15 cases or fewer for the 5-year data period).
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45 | P a g e
Map of Intervention Priority Areas
Figure 2.1 shows a map of the intervention priorities for the counties in the Affiliate service area.
When both of the indicators used to establish a priority for a county are not available, the priority
is shown as “undetermined” on the map.
Figure 2.1. Intervention priorities
Data Limitations
The following data limitations need to be considered when utilizing the data of the Quantitative
Data Report:
 The most recent data available were used but, for cancer incidence and deaths, these
data are still several years behind.
 For some areas, data might not be available or might be of varying quality.
 Areas with small populations might not have enough breast cancer cases or breast
cancer deaths each year to support the generation of reliable statistics.
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46 | P a g e






There are often several sources of cancer statistics for a given population and
geographic area; therefore, other sources of cancer data may result in minor differences
in the values even in the same time period.
Data on cancer rates for specific racial and ethnic subgroups such as Somali, Hmong, or
Ethiopian are not generally available.
The various types of breast cancer data in this report are inter-dependent.
There are many factors that impact breast cancer risk and survival for which quantitative
data are not available. Some examples include family history, genetic markers like HER2
and BRCA, other medical conditions that can complicate treatment, and the level of
family and community support available to the patient.
The calculation of the years needed to meet the HP2020 objectives assume that the
current trends will continue until 2020. However, the trends can change for a number of
reasons.
Not all breast cancer cases have a stage indication.
Quantitative Data Report Conclusions
Highest priority areas
Sixteen counties in the Komen Lexington service area are in the highest priority category. Six of
the sixteen, Boyle County, Clark County, Floyd County, Johnson County, Scott County and
Wayne County, are not likely to meet either the death rate or late-stage incidence rate HP2020
targets. Ten of the sixteen, Adair County, Casey County, Clay County, Garrard County, Harrison
County, Lawrence County, Leslie County, Magoffin County, Perry County and Taylor County,
are not likely to meet the late-stage incidence rate HP2020 target.
Screening percentages in Floyd County (55.0 percent) are significantly lower than the Affiliate
service area as a whole (74.0 percent).
Adair County has low education levels and high unemployment. Casey County has low
education levels and high poverty levels. Clay County has low education levels, high poverty
levels, and high unemployment. Floyd County has low education levels and high poverty levels.
Garrard County has high unemployment. Johnson County has low education levels. Lawrence
County has low education levels. Leslie County has low education levels. Magoffin County has
low education levels and high poverty levels. Perry County has low education levels. Wayne
County has low education levels, high poverty, and high unemployment percentages.
High priority areas
Two counties in the Komen Lexington service area are in the high priority category. Both of the
two, Boyd County and Madison County, are not likely to meet the late-stage incidence rate
HP2020 target.
The incidence rates in Madison County (133.1 per 100,000) appear to be higher than the
Affiliate service area as a whole (118.6 per 100,000) although not significantly. The death rates
in Boyd County (27.7 per 100,000) appear to be higher than the Affiliate service area as a whole
(24.1 per 100,000) although not significantly. The late-stage incidence trends in Boyd County
(12.4 percent per year) indicate that late-stage incidence rates may be increasing.
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47 | P a g e
Additional Quantitative Data Exploration
Susan G. Komen Lexington’s service area and demographic data were obtained from Kentucky
State Data Center and Kentucky Center for Education and Workforce Statistics. Proportion of
medically underserved and medical personnel shortage areas was obtained from the US
Department of Health and Human Services list of “Medically Underserved Areas 2014”.
The number of breast cancer cases, crude as well as age-adjusted breast cancer incidence and
death rates, and stage at diagnosis were obtained from the Kentucky Cancer Registry. This
data source also provides overall breast cancer cases in the entire Commonwealth of Kentucky
and was used to assist in ranking the priority counties in the Affiliate service area. This data
supplements the data in the Quantitative Data Report in which many of the counties had small
numbers. Kentucky Cancer Registry Data were added because it provides data in counties
regardless of small population numbers.
Crude rates compare the number of cases occurring in counties with smaller populations versus
those with larger populations. Crude rates, as well as age-adjusted rates, were used to compare
counties. Considered a more accurate measure, age-adjusted rates correct for varying age
distributions across counties. Therefore, the Affiliate chose to use Kentucky Cancer Registry
data because it provided the Affiliate with data that was not suppressed due to small numbers.
The Kentucky Cancer Registry is the official population-based central cancer registry for the
Commonwealth of Kentucky. Only female breast cancer data were gathered and analyzed for
this report. County-level, late-stage diagnosis data are estimated from national trends which
limits the ability to determine specific community trends.
Selection of Target Communities
Early detection is key to increasing the chances of surviving breast cancer. Nationally, the five
year survival rate for Stage 1 is now 100 percent as compared to 22.0 percent at Stage IV
(American Cancer Society, 2014). This demonstrates the importance of screening and early
detection. In the Affiliate area, 30.2 percent of cases were Late-Stage Diagnosis. Late-stage
diagnosis data percent is used in Kentucky instead of rates because rate per 100,000 would
yield results too small to be useful. This is due to Kentucky having 120 counties, many of which
are very small in population. Late-Stage Diagnosis data for priority counties can be found in
Table 2.8.
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48 | P a g e
Table 2.8. Late-stage diagnosis data by priority county, 2008-2011
a
County at Diagnosis
% Late-Stage*
% Late-Stage**
29.3
33.5
Clay
30.4
34.1
Jackson
37.5
44.1
Owsley
20.0
22.2
41.1
44.6
Clinton
44.5
50.0
McCreary
44.7
47.7
Wayne
34.0
36.2
Minority Target Counties
23.8
29.2
Anderson
16.9
21.1
Bourbon
23.9
31.4
Clark
20.9
24.7
Fayette
27.4
34.1
Scott
34.2
40.4
Woodford
19.7
23.7
a
Kentucky Cancer Registry - Percent Stage at Diagnosis (Early in Situ & Local, and Local, First Primary) Site: Breast
2008-2011 by County.
* Early stage = in situ and local, Late-Stage= regional and distal
** Early stage = local, Late-Stage = regional and distant
The Kentucky State Data Center reports in 2012, that Kentucky consists of 120 counties and a
population of approximately 4.4 million. The state is 50.7 percent female, 89.8 percent White, 5
percent Black/African-American, and 2.8 percent Hispanic/Latino. Also 18.1 percent live below
the poverty level, 15.8 percent are uninsured, 51.0 percent have a high school education, and
21.0 percent have a Bachelor’s degree or higher.
There is substantial variation in both total population and demographic characteristics of the
Affiliate service area counties. Owsley County has a population of just over 4,500 while Fayette
County exceeds 300,000 individuals. Forty-four counties in the Affiliate area are considered
rural, while 14 are urban. Forty-five out of 58 counties are either Medically Underserved Areas
or Medically Underserved Populations. Poverty level ranges from a low of 11.5 percent in
Anderson County to a high of 41.4 percent in Wolfe County. Median household income ranges
from a low of just over $19,500 for Owsley County, to a high of just over $60,500 for Scott
County. For Affiliate counties without medical insurance, the numbers range from a low of 8.6
percent in Russell County to a high of 22.1 in Magoffin County. Unemployment percentages run
from 6.3 percent in Fayette County to 16.5 percent in Magoffin County. Counties with residents
earning less than a high school diploma or equivalent range from a low of 11.3 percent in
Fayette and Woodford Counties, to a high of 41.1 percent in Owsley County. Tables 2.9 and
2.10 provide data for demographic and socioeconomic measures for the Affiliate service area.
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49 | P a g e
MUA MUP†
Population
‡
Living in
Poverty₴
Urban
Rural
Urban*
Bath
MUP
18,675
20.6
Lincoln
Rural
MUA
24,461
23.8
21,728
11.5
McCreary
Rural
MUP
18,069
30.8
11,802
30.4
Madison
Urban
MUA
84,786
21
MUA
Affiliate
Counties
(AC)
Urban
Living in
Poverty₴
Rural
Anderson
Population
‡
Adair
MUA MUP†
Rural
Urban*
Affiliate
Counties
(AC)
Table 2.9. Komen Lexington service area counties by rural v. urban, medically underserved,
population density, and living in poverty
Bell
Rural
28,183
33.5
Magoffin
Rural
MUA
13,041
33.5
Bourbon
Urban
19,978
17.7
Martin
Rural
MUA
12,743
35.7
Boyd
Urban
49,164
19.2
Menifee
Rural
MUA
6,220
31
Boyle
Urban
28,658
17.5
Mercer
Rural
21,261
16.6
Breathitt
Rural
MUA
13,635
31.4
Montgomery
Rural
MUA
26,902
25.4
Carter
Rural
MUA
27,348
20.4
Morgan
Rural
MUA
13,668
29.1
Casey
Rural
MUA
7,000
16.3
Clark
Urban
4,722
36.4
Clay
Rural
MUA
MUA
16,082
27.4
Nicholas
Rural
35,787
15.8
Owsley
Rural
21,556
34.5
Pendleton
Rural
MUA
14,604
16.2
28,241
25.8
Clinton
Rural
MUA
10,285
28
Perry
Rural
MUA,
MUP
Cumberland
Rural
MUA,
MUP
6,819
23.7
Pike
Rural
MUA
64,178
23.5
Elliot
Rural
MUA
7,780
33.7
Powell
Rural
MUA
12,483
28.9
Estill
Rural
MUP
14,493
26.1
Pulaski
Rural
MUA
65,593
23.3
Fayette
Urban
MUA
305,489
18.2
Rockcastle
Rural
MUA
17,006
26.7
Floyd
Rural
38,949
28.1
Russell
Rural
MUP
17,497
27.3
Franklin
Urban
49,804
14.9
Scott
Urban
MUA
49,057
13.7
Garrard
Rural
MUA
16,913
18.5
Taylor
Urban
MUA
24,691
23
Green
Rural
MUP
11,315
20.4
Wayne
Rural
MUA
20,824
26.8
Greenup
Urban
MUA
36,707
16.6
Whitley
Rural
MUA
35,499
26.3
Harlan
Rural
MUA
28,543
32.5
Wolfe
Rural
MUA
7,164
41.4
Urban
25,077
12.2
Harrison
Rural
MUA
18,624
22.9
Woodford
Jackson
Rural
MUA
13,331
33.8
Total:
Jessamine
Urban
49,635
15.9
58 (AC)
Johnson
Rural
MUA
23,383
22.6
Kentucky
Knott
Rural
MUA
16,124
24.1
Knox
Rural
MUA
31,735
35.9
United States
313,914,040
14.9
Sources:
*Kentucky State Data Center, 2014
(http://ksdc.louisville.edu)
†US Department of Health and Human Services, 2014
(http://hrsa.gov)
‡ US Census Bureau, Annual Estimates of the Resident
Population, 2012 population
₴ US Census Bureau, 2008-2012 American Community
Survey, Table ID S1701 (5 year estimates.)
Kentucky Center for Education and Workforce Statistics,
2014. (http://KCEWS.ky.gov)
Laurel
Rural
59,462
20.4
Lawrence
Rural
MUA
15,848
26.9
Lee
Rural
MUA
7,706
36.9
Leslie
Rural
MUA
11,170
21.1
Letcher
Rural
MUA
23,952
25.7
Appalachian Priority 1 & 2
Counties
44/14
45/58
1,705,450
24.9
4,380,415
18.6
Minority Target Counties
MUA=Medically Underserved Area
MUP= Medically Underserved Population ®
50 | P a g e
Unemployment Rate
< High
School
Diploma or
Equivalent
Median
Household
Income
Without
Medical
Insurance
Unemployment Rate
< High
School
Diploma or
Equivalent
$31,169
21.4
7.7
27.7
Lincoln
$34,454
18.8
10.4
23.9
Anderson
$52,294
14.4
7.4
12.6
McCreary
$21,758
21.2
13.3
31.5
Bath
$29,632
18.9
10.1
25.4
Madison
$42,020
17.3
6.7
15.5
Bell
$25,952
18.5
13.3
33
Magoffin
$25,461
22.1
16.5
34.6
Bourbon
$40,894
19.8
7.7
16.9
Martin
$25,340
16
10.3
30.9
Affiliate
Counties
(AC)
Without
Medical
Insurance
Adair
Affiliate
Counties
(AC)
Median
Household
Income
Table 2.10. Komen Lexington service area counties by median household income, lack of
medical insurance, unemployment percentage, and less than high school diploma or equivalent
Boyd
$39,076
15.7
7.6
14.2
Menifee
$25,988
21.7
12.4
30.1
Boyle
$41,037
15.7
9.6
15.2
Mercer
$44,431
16
8.4
16.6
Breathitt
$23,049
17.3
11.9
35.4
Montgomery
$35,832
17.1
8.3
22.2
Carter
$35,415
18.3
11.1
25.2
Morgan
$29,154
19.6
11.4
30.7
Casey
$28,416
22
7.9
34.1
Nicholas
$41,832
18.9
9.4
23.4
Clark
$45,486
15.8
8
19.7
Owsley
$19,624
19.2
10.9
41.1
Clay
$22,296
17.7
12.7
37.9
Pendleton
$48,761
16.7
8.6
17.7
Clinton
$26,885
20.5
9.5
35.1
Perry
$32,676
17.8
12
31.7
Cumberland
$29,885
20.2
10.8
30.2
Pike
$33,227
18
9.1
28.4
Elliott
$24,481
18.6
11.1
29.5
Powell
$27,555
18.8
10.1
28.9
Estill
$28,684
18.7
8.9
28.3
Pulaski
$32,788
18.1
9.4
21.5
Fayette
$48,779
18.1
6.3
11.3
Rockcastle
$28,178
19.3
9.1
26.8
Floyd
$29,237
17.9
10.6
28.9
Russell
$29,465
8.6
8.6
27.8
Franklin
$47,086
16.9
6.7
13.7
Scott
$60,553
13
6.9
12.7
Garrard
$44,115
19.7
8.7
19.5
Taylor
$35,000
19.1
7.8
23.9
Green
$33,573
19.8
7.9
24.2
Wayne
$27,646
19.4
12.4
30.1
Greenup
$43,808
17.6
8
18.4
Whitley
$29,876
17.5
9.5
27.2
Harlan
$26,758
18.7
13.2
29.4
Wolfe
$21,168
17.4
12.8
37.1
Harrison
$36,393
17.3
7.5
19.3
Woodford
$56,672
16.3
5.8
11.3
Jackson
$22,213
19.4
14.4
34.6
TOTAL
Jessamine
$48,299
17.6
7.1
15
58 AC
$33,684
18
10
26
Johnson
$34,466
17.2
9.3
27.8
Kentucky
$42,610
16.9
8.2
17.6
US
$53,046
17.9
8.1
14.2
Knott
$32,482
17.3
13.2
31.3
Knox
$24,193
17.2
11.3
33.1
Laurel
$36,835
19
9.5
24.7
Lawrence
$32,622
18.4
9.9
28.4
Lee
$22,789
17.5
12.6
32
Leslie
$26,386
17
13.9
42.6
Letcher
$29,532
17.7
13.4
26.5
Appalachian Priority 1 & 2
Counties
Source: Kentucky Center for Education and Workforce
Statistics, 2014. (http://KCEWS.ky.gov)
Minority Target
Counties
Both Quantitative Data Report and Kentucky Cancer Registry data were used to determine the
selection of target communities. The Affiliate used both of these sources of data because using
two sets allows for a more complete and precise picture of statistics in counties in the Affiliate
service area. In using Kentucky Cancer Registry data it allows the Affiliate to look at data for
counties in the service area with small numbers, enabling the Affiliate to look at all county
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51 | P a g e
statistics and make the best informed decisions regarding which counties increased breast
health interventions should occur in.
With data provided by the Kentucky Cancer Registry (Kentucky Cancer Registry [KCR], 2010e)
the Affiliate learned that the Age-Adjusted Invasive Cancer Incidence Rates [Female Breast] in
Kentucky were 120.4 per 100,000 (2008-2011). Kentucky Cancer Registry Data show 929
deaths from breast cancer from 2008-2011 in the Affiliate service area (KCR, 2010a). AgeAdjusted Cancer Death Rates [Female Breast] were 22.2 per 100,000 (KCR, 2010a). When
age-adjusted death rates for Kentucky (all counties) are stratified by race and rural/urban status,
the death rate for Black/African-American women (31.9 per 100,000) is 1.5 times greater than
that of White women (21.5 per 100,000) (KCR, 2010c). This difference also exceeds variation
between rural and urban status and Appalachian versus non-Appalachian counties. Figure 2.2
details the age-adjusted values across demographic groups.
Figure 2.2. Age-adjusted death rates for female breast cancer (Kentucky, 2008-2011)
The Community Profile Team analyzed and compiled these data to determine target areas. Key
risk factors for Affiliate counties were analyzed including:
 Rural or Urban Status
 Medically Underserved Area (MUA) or Medically Underserved Population (MUP)
 Proportion of Population Living in Poverty
 Proportion of Minority Population
 Proportion of Medically Uninsured
 Age Adjusted Invasive Cancer Incidence Rates [Female Breast] (2008-2011)
 Age Adjusted Cancer Death Rates [Female Breast] (2008-2011)
 Late-Stage Diagnosis Rates [Female Breast] (2008-2011)
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The selected county-level variables were first stratified into two groups [Demographic (living in
poverty and without medical insurance) and Cancer variables (Age-Adjusted Incidence, AgeAdjusted Deaths, Late-stage Diagnosis (III and IV))], ranked within these two groups from
lowest rates to highest rates, and then combined into the final ranking. Risk factors were used to
prioritize counties into “Appalachian Priority 1 and 2”, “Minority Target” and “Non-Target”
categories. Six Appalachian counties (two groups of three, contiguous counties) were identified
with six additional counties selected for their proportion of minority women at risk as target
populations (Figure 3.2). Tables 2.11 and 2.12 are included to easily visually demonstrate the
presence of identified health disparities within the priority regions versus the remainder of the
Affiliate area.
Figure 2.3: Map of selected priority counties: Appalachian 1, Appalachian 2, and Minority
Target groups
Table 2.11. Comparison of priority county groupings versus non-target counties by
demographic characteristics
Demographic Characteristics
a
Average Population Black/African-American (%)
a
Average Population Hispanic/Latino (%)
*Average Living in Poverty
b
(%)
b
Average Uninsured (Medical) (%)
b
(%)
b
(%)
ⱡ Average Unemployment Percentage
Average Median Household Income
b
< High School Diploma or Equivalent
c
Proportion Medically Underserved Areas (%)
Proportion Rural
c
(%)
and 2 Counties
(N=6)
2.0
Minority Target
Counties
(N=6)
Non-Target
Counties
(N=46)
6.3
2.0
1.8
4.8
1.3
31.7
14.9
25.3
19.6
16.2
18.1
12.2
7.0
10.1
$ 23,403
$ 50,780
$ 32,795
35.1
14.1
26.3
100
33
80
100
NONE
83
Kentucky State Data Center (http://ksdc.louisville.edu/)
b
Kentucky Center for Education and Workforce Statistics 2014-15 Kentucky County Profiles.
(http://kcews.ky.gov/Reports/CountyProfile/CountyProfile201415.aspx)
c
Data Source: US Department of Health and Human Services: Find Shortage By State: MUA/P: (http://muafind.hrsa.gov/index.aspx)
*Statewide percent poverty percentage for KY = 18.6; National percent poverty percentage for US = 14.9 ⱡ Statewide percent
unemployed percentage for KY = 8.2; National percent unemployed percentage for US = 8.1
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Table 2.12. Comparison of priority county groupings versus non-target counties by cancer
indicators
Select Cancer Indicators and Outcomes for Target and NonTarget Counties
a
Total At-Risk Population
a
Total New Female Breast Cancer Cases (2008-2011)
Average Crude Incidence Rate (2008-2011)
a
Total Female Breast Cancer Deaths (2008-2011)
Average Crude Death Rate (2008-2011)
b
b
Average Percent Screening mammography in the last two years,
c
female (50-74) (%)
d
Average Late-Stage (III & IV) Diagnosis in 2010 (%)
and 2 Counties
(N=6)
Minority Target
Counties ‡
(N=6)
Non-Target
Counties
(N=46)
173,693
110,016 ‡
2,354,925
266
115 ‡
3,193
153.2
115.8 ‡¥
135.6
81
27 ‡£
649
46.6
28.7 ‡£
27.6 ₴
52.3 †
NA
70.0 €
35.1
NA
34.6
a
Kentucky Cancer Registry – Crude and Age Adjusted Invasive Cancer Incidence Rates (per 100,000) in Kentucky, Site: Female
Breast 2008-2011, by County (http://cancer-rates.info/ky/index.php)
b
Kentucky Cancer Registry – Crude and Age Adjusted Death Rates (per 100,000) in Kentucky, Site: Female Breast, 2008-2011
Data Sources:
a
Kentucky Cancer Registry – Crude and Age Adjusted Invasive Cancer Incidence Rates (per 100,000) in Kentucky, Site: Female
Breast 2008-2011, by County (http://cancer-rates.info/ky/index.php)
b
Kentucky Cancer Registry – Crude and Age Adjusted Death Rates (per 100,000) in Kentucky, Site: Female Breast, 2008-2011 by
County.
c
CDC- Behavioral Risk Factor Surveillance System, 2012
d
Kentucky Cancer Registry – Percent Stage at Diagnosis (Early, in Situ & Local: Single, First Primary) Site: Breast 2008-2011 by
County.
‡ Data provided for Black/African-American population only (Minority Target Counties).
¥ Data provided for Fayette and Scott Counties only. Anderson, Bourbon, Clark and Woodford data suppressed due to small
numbers of cases.
£ Data provided for Fayette County only. All other counties suppressed due to small numbers of cases.
₴ Data not included for Bath, Breathitt, Cumberland, Elliott, Lee, Martin, Nicholas, Pendleton, Wolfe (< 5 deaths, 2008-2011).
† Data not available for Clinton or Owsley Counties (suppressed <10 samples).
€ Data not available for Bath, Cumberland, Elliott, Estill, Green, Lee, Leslie, Martin, Menifee, Mercer, Nicholas, Powell and Wolfe
Counties (suppressed <10 samples).
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Table 2.13. Comparison of age-adjusted invasive breast cancer incidence rates, age-adjusted
death rates and age-adjusted late-stage diagnosis rates by priority regions
Age-Adjusted Invasive Cancer
a
Incidence (per 100,000)
Affiliate Region
Age-Adjusted Death
b
Rate (per 100,000)
Age-Adjusted Late-Stage
c
Diagnosis Rate (per 100,000)
Average
121.2
41.9
41.1
Clay
121.6
46.8
43.2
Jackson
121.3
35.6
60.1
Owsley
120.8
43.3
Average
121.9
33.0
58.1
Clinton
101.7
38.2
61.7
McCreary
146.8
27.6
62.0
Wayne
117.3
33.1
50.6
Minority Target
Counties Average
123.9
22.9
37.8
Anderson
134.4
20.4
32.2
Bourbon
85.8
28.4
30.5
Clark
132.5
22.7
35.2
Fayette
138.8
18.7
46.0
Scott
137.4
29.2
53.7
Woodford
114.4
17.8
29.4
20.0
d*
a
Kentucky Cancer Registry - Age-Adjusted Invasive Cancer Incidence Rates (per 100,000) in Kentucky, Site: Female Breast 20082011, by County (http://cancer-rates.info/ky/index.php)
b
Kentucky Cancer Registry - Age-Adjusted Cancer Death Rates (per 100,000) in Kentucky, Site: Female Breast 2008-2011, by
County (http://cancer-rates.info/ky/index.php?datasource=mort)
c
NAACCR-CINA Deluxe Analytic File, 2006-2010
d
Kentucky Cancer Registry - Percent Stage at Diagnosis (Early, in Situ & Local: Single, First Primary) Site: Breast 2008-2011 by
County
*Data provided in percentage for this county due to rates per 100,000 yielding results too small to be useful.
Appalachian Priority 1 Counties. Clay, Jackson, and Owsley have high levels of poverty, with
more than one third of their residents living in poverty. Clay County ranks sixth at 36.5 percent,
Jackson County ranks seventh at 35.6 percent, and Owsley County ranks third at 39.3 percent
respectively, within the Affiliate area on this measure (Table 2.5). With small, primarily White
population in a mountainous region of the state, all are rural with a medically underserved
designation. Medically uninsured population percentages (Ages 40-64) were 16.6 percent for
Clay, 19.2 percent for Jackson, and 18.4 percent for Owsley (Table 2.5). In this rural area of the
state, providers are few and having insurance does not assure access to care. Clay, Jackson,
and Owsley Counties had very similar rates of Age-Adjusted Invasive Cancer Incidence (per
100,000 population), ranking from a low of 120.8 (Owsley) to 121.6 (Clay) with rates that are
similar to Kentucky as a whole, at 120.4 per 100,000 (Table 2.13). Late-stage diagnosis data
percent varied widely, ranging from a high of 60.1 percent for Jackson County, 43.2 percent for
Clay County, and to a low of 20.0 percent for Owsley County (Table 2.13). However, disparities
in breast cancer survival were evident in these counties, with the age-adjusted death rates
substantially higher than the state rate of 22.2 per 100,000. The age-adjusted death rate for
Clay County in this period was 46.8 per 100,000 which ranks the highest in the Affiliate Region.
Owsley County ranked second (43.3) and Jackson County fifth (35.6) for this measure (Table
2.13). This suggests that while overall incidence is similar to state levels, women are not getting
the care that they need and this delay is resulting in lower rates of survival.
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Appalachian Priority 2 Counties. Clinton, McCreary, and Wayne also have elevated levels of
poverty, with a high of 30.9 percent of their population in McCreary County, 27.6 percent for
Wayne County, and a low of 25.7 percent for Clinton County, respectively (Table 2.5). Located
on the Tennessee border, this grouping of counties is slightly more racially mixed. The
Black/African-American female population of McCreary County is 0.8 percent, 0.5 percent for
Clinton County, and 1.6 percent for Wayne County (Table 2.4). The Hispanic/Latina female
population was 1.8 percent for Clinton County, 0.6 percent for McCreary County, and 2.6
percent for Wayne County (Table 2.4). Approximately 20 percent of their populations are
uninsured and all three are designated as rural populations as well as Medically Underserved
Areas. Invasive Cancer Incidence Rates for this group are high. McCreary County is ranked as
the second highest in the Affiliate area with an age-adjusted rate of 146.8. Wayne and Clinton
follow with rates of 117.3 and 101.7, respectively (Table 2.13). Age-Adjusted Death Rates range
from a high of 38.2 to a low of 27.6 per 100,000, however these are based upon small numbers
of deaths (given the small overall populations of these areas) and therefore may be unstable
(Table 2.13). Age-Adjusted Late-Stage Diagnosis percentages range from a high of 62.0 in
McCreary County, to 61.7 in Clinton County, to a low of 50.6 in Wayne County per 100,000
(Table 2.1).
Minority Target Counties. Counties within the Affiliate region with the highest proportion of
minority residents include the counties of Anderson, Bourbon, Clark, Fayette, Scott and
Woodford. While the counties selected do not rank poorly on measures for the general
population, stratifying by minority status (Black/African-American, Hispanic/Latina) reveals
hidden disparities and elevated risk of poor outcomes. Considered part of the Bluegrass Region,
these six counties are primarily comprised of rolling farmland and are considered to be urban
counties. Fayette and Scott are also designated as Medically Underserved Areas. Five of the six
counties have substantial populations of individuals claiming Black/African-American race or
Hispanic/Latina ethnicity and in Fayette County, provider shortages limit access to care in innercity neighborhoods.
The percent of Black/African-American population ranges from 15.7 percent in Fayette County
to 2.9 percent in Anderson County, with the other counties being 6.8 percent (Bourbon), 5.4
percent (Clark), 5.6 percent (Scott), and 5.5 percent Woodford (Table 2.4). The percent of
Hispanic/Latina population is 1.2 percent for Anderson County, with Bourbon County at 5.2
percent, Clark at 2.1 percent, Fayette at 5.9 percent, Scott at 3.7 percent, and Woodford at 5.3
percent (Table 2.4). While the proportions of those living in poverty or without insurance are
relatively low in these areas, this is not so for minority populations, although small numbers limit
the ability to provide rates for many counties.
Due to Fayette County’s large population size (308,000 in 2013) and a growing population in
neighboring Scott County (49,947 in 2013), the Affiliate is able to provide minority incidence
rates for both (United States Census Bureau, n.d.). The Affiliate is also able to provide death
rate data for Fayette County. The Age-Adjusted Incidence Rate of invasive cancer in Fayette
County among the Black/African-American population is 136.1 per 100,000 (KCR, 2010d). The
rate for Scott County, where far fewer cases occur, is 163.2, although this rate is based upon
small numbers and therefore may be unstable (KCR, 2010d). While death rate data were not
available for Scott County, in Fayette County the age-adjusted rate of death due to female
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56 | P a g e
breast cancer is 36.7 per 100,000 (KCR, 2010b); considerably higher than that for the
Commonwealth as a whole at a rate of 22.2 per 100,000 (Figure 2.2).
The next section of the Community Profile is the Health System and Public Policy Analysis. In
this section the Affiliate will: explore sources and the process used to obtain an understanding
of programs and services; look at services available in the Affiliate area; discuss the continuum
of care; summarize health system strength and weaknesses, Mission related partnerships, and
potential new partnerships/collaborations; discuss the National Breast and Cervical Cancer
Early Detection Program in the Affiliate area and how it relates to Medicaid, along with the
current relationship and future plans the Affiliate has with this program; describe the State
Comprehensive Cancer Control Coalition in Kentucky and how the Affiliate works with this
program; talk about the Affordable Care Act (ACA) including Medicaid expansion and
implications of the ACA within the Affiliate area; and describe the Affiliate's public policy activity
work and potential future service area and/or state public policy activities.
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Health Systems and Public Policy Analysis
Health Systems Analysis Data Sources
Data were gathered from internet searches, resources provided by Susan G. Komen, and
Affiliate database information.
 Health Departments for each target county were found using the Kentucky Local Health
Department Listing (Kentucky Cabinet for Heath and Family Services, 2014).
 Hospitals were found using Medicare.gov (Medicare.gov, n.d.).
 Free clinics were found using the National Association of Free & Charitable Clinics
(NAFC) website (NAFC, n.d.).
 Community Health Centers were found using Google and US Department of Health and
Human Services: Health Resources and Services Administration (USDHHS) website
(USDHHS, n.d.).
 Area Health Education Centers (AHEC) and other medical facilities in target
communities were found using Google and the AHEC directory (AHEC, n.d.).
 To see if any institutions in target communities are American College of Surgeons CoC
accredited, the American College of Surgeons website was used (American College of
Surgeons, n.d.b.).
 American College of Radiology Breast Imaging Center of Excellence status was found
using the American College of Radiology website (American College of Radiology, n.d.).
 To determine if facilities have American College of Surgeons NAPBC accreditation the
American College of Surgeons website was used (American College of Surgeons,
n.d.a).
 To find National Cancer Institute (NCI) designated centers in target communities the
Affiliate used the NCI website (NCI, n.d.).
 Mammography centers were found using the US Food and Drug Administration (FDA)
website (FDA, n.d.).
 Information about the Continuum of Care was gotten from Susan G. Komen (Komen,
2014).
Health Systems Analysis information was compiled into a spreadsheet to demonstrate the
availability of resources and assets. Resources were broken down by target county area:
Appalachian Priority 1 and 2, and Minority Target Counties. Findings were then examined for
potential strengths and weaknesses in each target community. By visually assessing the
spreadsheet and counting each entry, the Affiliate was able to determine which target
communities as a whole and which target counties have the most resources available.
Health Systems Overview
Overview of Continuum of Care
The Breast Cancer Continuum of Care (CoC) is a model that demonstrates how women would
normally move through the health care system for breast health care (Figure 3.1). Women
would preferably move through the CoC swiftly and easily in order to receive timely, superior
care and to facilitate the best outcomes.
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Figure 3.1. Breast Cancer Continuum of Care (CoC)
While a woman can enter the CoC at any point, if at all possible a woman would come into the
CoC by getting a breast cancer screening - either with a clinical breast exam (CBE), a screening
mammogram, or both. If screening test results are normal, the woman would circle back around
into follow-up care. Then she would get another screening exam at the suggested interval.
If a screening exam resulted in abnormal results, diagnostic tests would be needed, possibly
quite a few , to figure out if the abnormal finding is actually breast cancer. The tests might
consist of a diagnostic mammogram, breast ultrasound, and/or a biopsy. If the tests performed
were negative (or benign) and breast cancer was not found, the woman would move to the
follow-up loop, and return for a screening at the recommended interval. The recommended
intervals may range from 3 to 6 months for some women, to 12 months for most women.
If breast cancer is diagnosed, the woman would continue on to treatment. For some breast
cancer patients, treatment may last a few months. For others, treatment may last for years.
Even though the CoC model shows follow up and survivorship coming after the end of
treatment, they might actually happen at the same time. Follow up and survivorship may include
topics such as navigating insurance issues, finding financial assistance, and symptom
management including pain, fatigue, sexual issues, bone health, etc.
There are sometimes interruptions in moving from one part of the CoC to another part - at the
point of follow-up of abnormal screening exam results, beginning treatment, and carrying out
treatment - that can all result in poorer outcomes. In addition, there are multiple reasons why a
woman does not go into or continue in the breast cancer CoC. Barriers can include: lack of
transportation, system problems including long waits for appointments and inconvenient clinic
hours, language barriers, fear, and lack of information or the incorrect information (myths and
misconceptions).
Education plays an important role throughout the entire CoC process. The role is both in
supplying education to encourage women to get screened, and emphasizing the need to
continue to get screened regularly. Education plays a part in communicating the importance of
proactively getting test results, keeping follow-up appointments, and understanding what it all
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means. Learning about breast cancer can empower a woman and help her cope with anxiety
and fear. Education can envelop such matters as treatment options, how pathology reports can
help determine the best choices for treatment, comprehending side effects and how to handle
them, and helping to put together questions a woman might have for her health care providers.
Education might cover topics such as making healthy daily life choices, long term consequences
of treatment, managing side effects, and the value of follow-up appointments and
communication with their providers. Most women will return for screening at a suggested
interval after finishing treatment, or for some, throughout treatment (such as those women
taking long term hormone therapy). Education may be able to address at least some of these
barriers and help women progress through the CoC faster and more efficiently (Komen, 2014).
Overview of Target Communities
In the Appalachian Priority 1 region, there are very few resources (Figure 3.2). Komen
Lexington determined that for breast health care within Clay County there were three resources:
a health department, hospital, and community health center. Both Jackson and Owsley
Counties have a health department and community health center but no hospitals. There is at
least one mammography center in each of these three counties. There were no free clinics in
this region, but community health centers and health departments offer sliding fee scales to help
patients with paying for care. The facilities in this region offer breast health screenings but little
to no treatment options. Some patient navigation is offered but there are opportunities for more
development in this rural area. If this region has support groups they were not known to Komen
Lexington at the time of Community Profile completion. There are limited follow-up/survivorship
options such as complimentary therapies and side effect management.
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Figure 3.2. Breast cancer services available in Appalachian Priority 1 Counties
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The Appalachian Priority 2 region also has very few resources (Figure 3.3). Clinton County has
a hospital, health department, and community health center. McCreary County has two
community health centers and a health department. Wayne County has a health department,
hospital, and community health center. McCreary County does not have a mammography
center; Clinton and Wayne Counties have at least one. There were no free clinics in this area,
but sliding fee scales are offered for payment purposes. As with the Appalachian Priority 1
region, there are screening options but little to no treatment options. Komen Lexington could not
find any active breast cancer support groups in this region. There are few follow-up/survivorship
options in this region.
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Figure 3.3. Breast cancer services available in Appalachian Priority 2 Counties
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In the region that comprises the Minority target counties there are many resources for breast
health (Figure 3.4). There are more resources in this area than both Appalachian priority county
regions put together. Anderson County has a medical group facility, community health center,
and health department. Bourbon County has a health department and a hospital. Clark County
has a hospital, health department, and a free clinic. Fayette County, the headquarters of Komen
Lexington, has a health department, four community health centers, four hospitals, three free
clinics, a breast center, outpatient care center, a medical group, and a health education center.
Scott County has a health department, hospital, a breast imaging center, and a free clinic.
Woodford County has a health department, hospital, and community health center. Anderson
County does not have a mammography center, but the other five counties in this region have at
least one. This region has several free clinics, and community health centers and health
departments offer sliding fee scales for payment. There are many opportunities to obtain a
mammography screening in this region. Treatment is available at multiple hospitals as well.
Fayette County offers the most extensive treatment in this region including: surgery,
reconstruction, radiation, and chemotherapy. However, the other counties in this region (except
Anderson) have at least surgical treatment options (e.g., lumpectomy, mastectomy). There are
13 established breast cancer support groups in Fayette County. Clark County has one support
group, the only other known group in this region. There are more opportunities in this region for
follow-up/survivorship. In addition to the numerous survivor groups, there are many locations
offering complimentary therapies such as yoga, individual counseling, and side effect
management.
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Figure 3.4. Breast cancer services available in Minority Target Counties
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There is potential in the counties and regions which lack resources to improve upon that
situation. Mammography centers are essential and counties without mammography services
indicate areas where needs are potentially unmet. Some of these counties needs may be met
with a mobile mammography unit, while others could benefit from increased transportation
service opportunities. Internet support groups are very helpful for the counties that may not have
active support groups. Different online resources offer support, either through information about
breast cancer or connecting individuals with others experiencing the breast cancer continuum of
care. It is possible that internet support groups could meet the unmet support group needs in
areas where no face-to-face group is located.
Overall, it appears that there is unequal distribution of resources within the Affiliate's three
priority regions. Minority target communities have disproportionately more resources per county
than the Appalachian priority regions. In Fayette County alone there are more resources than in
either Appalachian priority region. The Minority target counties have greater access to hospitals,
support groups, local coalitions/programs, and patient navigation resources than Appalachian
counties. There is a great need for increased access to resources within the Appalachian
Priority 1 and 2 regions.
Overview of Partnerships
Many organizations are in the fight to reduce breast cancer alongside Komen Lexington. In the
Minority target region there are many partnerships. Baptist Health Lexington is a hospital which
provides support by being active on Komen Lexington committees such as the Colors of
Promise coalition and a survivorship coalition. The Lexington-Fayette County Health
Department, Community Action Center, and William Wells Brown Community Center partner
with Komen Lexington for health fairs and to combine educational resources. Individuals from
these organizations are active on committees and help Komen Lexington in advocating for a
healthy lifestyle including breast health. Toyota Manufacturing partners with the Affiliate to help
educate elementary school children. Funding from Toyota has allowed Komen Lexington to
work on developing kid-friendly, easy to understand breast cancer information (including
information on how they might feel if a loved one has breast cancer), and to purchase silly
bands in the shape of the Susan G. Komen Running Ribbon as a reminder to kids and their
parents to be aware of breast cancer risks. Churches in Lexington partner with the Affiliate for
Pink the Pews. Pink the Pews is an event Komen Lexington aims to have every year in October.
Volunteers attend churches in their communities, make a small speech about the importance of
breast cancer awareness and what Komen Lexington does in their community, and disseminate
tri-folds, Breast Self-Awareness cards, and educational materials to the church attendees. The
Kentucky Department of Public Health and University of Kentucky College of Public Health
support Komen Lexington's committees, and share resources and educational materials.
Unfortunately, Komen Lexington's partnerships are highly centralized within the Minority target
region, and the Affiliate has not partnered much with Appalachian Priority 1 and 2 counties in
the past. Appalachian Priority 1 and 2 counties are in rural, mountainous regions of the state;
traveling to these locations can be difficult, especially during the winter. There are few
opportunities for the Affiliate to partner with existing organizations in these two regions. This
leaves a gap where improvements should be made. Komen Lexington can begin to remedy this
deficit by working with the health departments, community health centers, and hospitals in these
six Appalachian counties. The Affiliate can help organize health fairs or have a presence at
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existing fairs. Komen educational materials such as brochures, pamphlets, and Breast SelfAwareness cards, should be distributed to all health care facilities in these regions to raise
awareness of breast cancer and of the Komen organization. Komen Lexington should organize
meetings with key health professionals and brainstorm the best ways to get out breast cancer
messages to residents of their communities. Awareness of unique demographic and
socioeconomic characteristics in these two Appalachian regions should be noted with key
personnel, and discussions should be held about how best to overcome information
dissemination challenges and tailor breast cancer messages.
Even though there are many partnerships in the Minority target region, they are mostly located
in Fayette County. It would be beneficial to expand to the other five counties in this region.
Churches would be a great place to start, as Pink the Pews has shown to be a successful
marketing and awareness tool. An increased presence at community events such as health fairs
and festivals outside of Fayette County should be beneficial not only for awareness and
outreach, but for enhanced knowledge and understanding in those communities of Susan G.
Komen’s organizational goals, mission, and values.
Public Policy Overview
National Breast and Cervical Cancer Early Detection Program (NBCCEDP)
The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) for Kentucky is
funded by state and federal money including the Centers for Disease Control and Prevention
(CDC). The Kentucky Women's Cancer Screening Program of the Department of Public Health
(KWCSP) is the Affiliate's local NBCCEDP. KWCSP provides breast and cervical cancer
screening and follow-up services, professional education, public education, outreach, quality
assurance, and surveillance (Kentucky Cabinet for Health and Family Services [KCHFS], n.d.a).
Other services include: pelvic examinations, HPV tests, diagnostic testing, and referrals to
treatment (American Cancer Society, 2013). Their mission is to provide un/underinsured and
underserved women with cancer screenings. Prior to 1990, local health departments in
Kentucky provided limited breast cancer screening services consisting of instruction on breast
self-examination and counseling on risk factors for breast cancer (Note: Susan G. Komen
utilizes breast self-awareness messaging because breast self-exams are not an evidencebased practice. To learn more about breast self-awareness, go to
http://ww5.komen.org/BreastCancer/BreastSelfAwareness.html). When new state funds became
available in 1990, local health departments in all 120 counties expanded their services to
include clinical breast exams, referrals for screening mammograms, and referrals for follow-up
diagnostic tests (KCHFS, n.d.a).
The Kentucky Women's Cancer Screening Program provides low-cost mammograms and Pap
tests through health departments in every county. To utilize the program women must enter the
system through their local health department. Three factors are used to determine eligibility for
breast cancer screening: age, income, and uninsured status (no private insurance, no Medicaid,
no Medicare). Women age 40-64 who meet guidelines and are uninsured are eligible for
screenings every year. Women younger than 40 are eligible to receive screening services if they
have a family history of breast cancer (KCHFS, n.d.a).
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To find out eligibility for a free or low cost screening, individuals can call (800)-462-6122, or
contact:
Kentucky Women's Cancer Screening Program
Cabinet for Health and Family Services
Division of Women's Physical and Mental Health
Department of Public Health
275 East Main Street, HS2GW-A
Frankfort, KY 40621–0001
(502) 564-3236
Fax: (502) 564-1552
http://chfs.ky.gov/dph/info/dwh/cancerscreening.htm
Women in the Commonwealth of Kentucky can get Medicaid treatment access in the state by
applying for Medicaid online at https://kyenroll.ky.gov/. Women who are currently eligible
include parents of dependent children at 138 percent of the federal poverty level (FPL) (Kaiser
Family Foundation [KFF], n.d.a), and pregnant women at 200 percent of the FPL (KFF, n.d.b).
Women who have breast and cervical cancer can get Medicaid through The Breast and Cervical
Cancer Treatment Program if they have been screened through the KWCSP, are not covered
under any other insurance, are not eligible for Medicaid under any other eligibility group, and are
not yet 65 years old (KCHFS, n.d.b). The KWCSP and Medicaid partner together to help reach
a larger audience. In Kentucky, a woman is eligible for Medicaid if her provider receives
NBCCEDP funds and the service was within the scope of a grant, sub-grant, or contract under
that state program - even if the woman’s screening may not have been paid directly from
NBCCEDP funds (Susan G. Komen, n.d.).
Komen Lexington is a community partner with the KWCSP supplying services and resources
that are not restricted by the states program scope of work. Both programs work in tandem by
providing education, screenings, and treatment. In addition Komen Lexington can also address
barriers regarding access, treatment, health care and social services, and other support needs
that other agencies cannot provide. Susan G. Komen Headquarters is a valued resource as
evident by the linkage off the state KWCSP webpage and sustainability of this partnership is
critical as Komen Lexington continues to address breast cancer disparities in the
Commonwealth of Kentucky. There will be continued discussion regarding partnership efforts
between KWCSP, the Affiliate, the Kentucky Cancer Program, and the Kentucky Cancer
Consortium regarding resources, specific programming, linkages to treatment, services, care,
education, and prevention efforts.
The need for coordinated efforts and partnerships will be extremely important as Kentucky’s
expanded Medicaid, Kynect (Kentucky's new health care marketplace), and the changes with
the Affordable Care Act increase access to care for many women that have been unable to
have medical care and services previously. Komen Lexington will strive to maintain and
strengthen current partnerships and to expand and include new partnerships within the
Appalachian Priority 1 and 2 regions to address new challenges and needs within the Affiliate
service area.
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State Comprehensive Cancer Control Coalition
Kentucky's Comprehensive Cancer Control Coalition is the Kentucky Cancer Consortium (KCC). KCC is a statewide partnership of various organizations committed to reducing the cancer
burden in the state. The mission of the KCC is to attain considerable reductions in incidence,
morbidity, and death of cancer among Kentucky citizens through a comprehensive, integrated,
and coordinated approach to cancer control (Kentucky Cancer Consortium [KCC], n.d.a). The
KCC's breast cancer objectives are:
 increase the percentage of Kentucky women age 40 years and older who have had a
mammogram within the past two years from 75.0 percent (2008 BRFSS) to 80.0 percent
by 2013;
 increase the percentage of Black/African-American women in Kentucky aged 40 years
and older who have had a mammogram within the past two years from 80.0 percent
(2008 BRFSS) to 85.0 percent by 2013;
 increase the percentage of Kentucky women with less than a high school education
aged 40 years and older who have had a mammogram within the past two years from
62.2 percent (2008 BRFSS) to 65.0 percent by 2013;
 increase the percentage of Kentucky women with an income of less than $15,000 per
year aged 40 years and older who have had a mammogram within the past two years
from 61.8 percent (2008 BRFSS) to 63.0 percent by 2013; and
 increase percentage of Kentucky women diagnosed at an early stage of breast cancer
from 84.0 percent (2006 KCR) to 87.0 percent by 2013 (KCC, 2013).
Strategies oriented to the individual aim to:
 utilize client reminders (e.g., letters, postcards, or phone calls) to alert clients that it is
time for their mammogram;
 utilize client incentives (e.g., small rewards such as cash or coupons) that encourage
women to have a mammogram;
 utilize small media (e.g., videos, letters, brochures, newsletters) to inform and motivate
women to have a mammogram;
 utilize mass media (e.g., TV, radio, newspaper, magazines, billboards) to educate and
motivate women to have a mammogram;
 educate groups on the indications for, benefits of, and ways to overcome barriers to
receiving mammograms, with the goal of informing, encouraging, and motivating
participants to seek a mammogram;
 educate one-on-one, either in person or via telephone, on the indications for, benefits of,
and ways to overcome barriers to receiving a mammogram, with the goal of informing,
encouraging, and motivating participants to seek a mammogram;
 reduce structural barriers such as screening location, limited hours of operation, lack of
childcare, and language and cultural factors;
 reduce out-of-pocket costs for screening; promote and expand community-level
programs, such as breast cancer coalitions, to increase education about the risk of
breast cancer and the need for screening at appropriate intervals;
 train Community Health Workers (CHWs) to deliver evidence-based cancer riskreduction interventions with consistent screening messaging in health disparate
communities, businesses, churches, and social groups;
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support CHWs in conducting community group seminars about available mammography
screening resources, support CHWs in conducting follow-up calls with women who do
not show up for a scheduled mammography, and identify barriers; and
train CHWs to identify uninsured women, refer them to the Kentucky Women’s Cancer
Screening Program (KWCSP), and track their referral (KCC, 2013).
Strategies oriented to health care professionals aim to:
 promote health care provider utilization of current screening guidelines through
professional journals and association newsletters;
 organize opportunities for provider assessment and feedback (example: how often
providers offer and deliver screening services to clients and then give providers
information about their performance);
 utilize provider incentives, such as monetary rewards or CMEs, that motivate providers
to perform screening or refer clients for screening;
 utilize provider reminder and recall systems (e.g., chart stickers; electronic medical
records); and
 utilize CHWs to evaluate and provide feedback on client reminders and/or small media
to assure that they are culturally sensitive (KCC, 2013).
Strategies utilizing advocacy aim to:
 mobilize grassroots advocates for legislative change;
 increase the use of available financial resources for routine screening for uninsured and
underinsured women;
 encourage in-state self-insured companies and in-state branches of companies located
outside Kentucky to provide screening mammography coverage in accordance with
evidence-based screening guidelines; and
 ensure that age-eligible women in counties without mammography facilities have
adequate access to breast cancer screening through facilities in adjoining counties
and/or mobile mammography units (KCC, 2013).
Strategies utilizing workplace wellness aim to:
 encourage worksite cultures that offer benefits and programs that facilitate detecting
cancer at its earliest stages;
 offer employee health benefit plans that eliminate cost as a barrier to accessing breast
cancer screenings;
 ensure that employee health benefit plans include breast cancer screening provisions
that adhere to the American Cancer Society (ACS) Guidelines or the US Preventive
Services Task Force (USPSTF) Guidelines;
 incorporate breast cancer risk reduction and early detection information into worksite
wellness programs; and
 conduct assessment related to feasibility of implementing health promotion programs
within Kentucky worksites, with special emphasis on cancer risk reduction and control
(KCC, 2013).
The Affiliate currently has a working relationship with KCC. Affiliate staff are a part of KCC's
Survivorship/Patient Navigation Team, a team dedicated to providing a state-level forum for
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networking and sharing among organizations that have a statewide or multi-regional impact in
Kentucky. The Survivorship/Patient Navigation Team is currently focusing on cancer patient
navigation, with the hope of forming a sustainable cancer patient navigation network of
professionals in Kentucky. The Affiliate tries to have at least one representative present at every
KCC meeting. The Team works to achieve the Cancer Action Plan goal of "promoting the overall
health of Kentucky cancer survivors from diagnosis onward, to increase quality of life" (KCC,
n.d.b).
The Affiliate's plan for the next four years to establish or strengthen its roles with the state's
cancer coalition include: continuing to attend KCC meetings, and networking with health
professionals; shaping more grant writing efforts around KCC breast cancer objectives;
partnering with KCC for the development and continued efficacy of Affiliate programming; and
sharing resources such as data, tools, and techniques for ensuring underserved populations
receive breast care in an efficient and timely manner. There will be continued discussion
regarding partnership efforts between Komen Lexington and the KCC regarding linkages to
treatment, services, care, education, and risk reduction efforts. The need for coordinated efforts
and partnerships will be very important as the Affiliate progresses in regards to the Affordable
Care Act.
Affordable Care Act
Kentucky is one of the states that implemented the Affordable Care Act Medicaid expansion.
The goal for Kentucky is insurance coverage for every Kentucky resident, which the expansion
of Medicaid will help the state accomplish. The Medicaid expansion will cover people up to 138
percent of the federal poverty level (KFF, 2014). Those who remain uninsured due to not
qualifying for Medicaid will have access to a state-run health insurance exchange, called
Kynect, which is a marketplace to obtain coverage from various health insurance providers.
Kentucky will still receive federal funding participation even though the health insurance
exchange is state-run. Prior to the insurance mandate, there were an estimated 640,000
uninsured Kentuckians, or 17.5 percent of the state’s population under the age of 65.
Approximately 332,000 individuals gained coverage through the Health Benefit Exchange. With
the expansion of Medicaid, the other 308,000 uninsured may be able to gain health insurance
coverage through Medicaid (KCHFS, n.d.c).The aim through Medicaid expansion is to ensure
these remaining people get health insurance coverage.
There have been implications of the Affordable Care Act (ACA) on Kentucky's NBCCEDP
eligibility and utilization. Since more women will be eligible for health insurance, the number of
women eligible to receive the services of the KWCSP has decreased. KWCSP continues to
provide screenings to low-income and underserved women who are not insured. KWCSP also
works with Kynect assisters in getting them insured though the state health insurance
marketplace or expanded Medicaid. The ACA will allow for more funding for state and local
prevention efforts boosting public health capacity, large outreach efforts, and community health
needs assessments (American Public Health Association [APHA], 2012).
There are several implications of the ACA for health care providers in Kentucky. Physicians and
surgeons working in rural areas will receive a 10.0 percent Medicare pay bonus (Trent, 2014;
APHA, 2012). Medical students who specialize in primary care will receive additional funding
and scholarships. Specialty physician providers may experience increased regulatory limitations
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on their practice. Physicians should also expect a flood of new patients (Harrah, 2013; APHA,
2012). Another implication involves Stark Law. Physicians will be required to identify possible
Stark Law violations through human health services. These doctors may have reduced penalties
if violations are found. Furthermore, a physician within a group practice is required to inform all
patients at time of imaging referral in writing of any alternative imaging providers where the
patient resides other than the ones specified by the referring physician (Stark Law, n.d.).
Additionally, in 2015, the Physician Quality Reporting System will apply a payment adjustment
to eligible professionals who do not adequately report data (Centers for Medicare & Medicaid
Services, 2014). Certain preventative services will now be covered at no cost because of the
ACA implementation (Healthcare.gov, n.d., APHA, 2012).
There are many implications of the ACA on the Affiliate. As a grantmaker, the Affiliate should
not directly fund patient navigators that are being utilized as insurance navigators for the
purposes of the ACA. As an educator, the Affiliate should ensure women are aware that
insurance should now be available to them and provide https://kyenroll.ky.gov/ as a resource
where individuals can explore their insurance opportunities. The Affiliate should not suggest a
particular insurance program or provide guidance on choice options. The Affiliate may not
directly or indirectly accept funds from a local, state, federal, or foreign government entity. The
Affiliate cannot apply to become a grantee that is providing insurance navigation for individuals.
The Affiliate should continue to grant funds to assist in the access and utilization of diagnostic
and treatment procedures. Most Community Profile work and grantmaking strategy should align
with the health care systems in the target communities. New populations of uninsured women
include undocumented immigrants, individuals eligible for Medicaid but not enrolled, individuals
exempt from health care mandate (no income tax, religious exemptions, etc), and those who
choose to remain uninsured. These individuals may still require financial assistance for
screening mammography. Hard to reach populations will remain uninsured. These are the
individuals that need to be considered for targeted, evidence-based education interventions that
lead them to an action such as implementing risk reduction behaviors or receiving appropriate
screening. Newly insured people will need education regarding how to find a primary care
physician and their risk for breast cancer, and the Affiliate should help provide this perspective.
The amount of low-income insured women will rise. This population will consist mostly of
Hispanics/Latinos and poorly educated women. Although insured, they may not utilize their
resources and receive mammograms and other screening procedures which the Affiliate will
need to help facilitate (Susan G. Komen, 2013).
Affiliate’s Public Policy Activities
In addition to working with the Kentucky Cancer Consortium and attending meetings, the
Affiliate partners with the KWCSP to provide services and resources that other agencies cannot
provide. However, there is still some room for the Affiliate to improve on efforts to be active in
future service areas and Kentucky public policy activities. In the future, the Affiliate would like to
work with the Governor's office. Komen Lexington also wishes to be more active with the KCC
and KWCSP by shaping future policy change efforts to be more in line with those organization's
policies and needs. The Affiliate would like to attend future lobbying events within the Affiliate
service area and statewide.
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Health Systems and Public Policy Analysis Findings
There is a great need in the Affiliate's two Appalachian priority communities for more resources
in regards to breast cancer screenings, treatment, follow-up/survivorship, and access to care.
Health asset mapping through spreadsheet use helped identify the two counties in the Affiliate
target regions with no mammography services. Partnerships with existing organizations are
encouraged to assist the Affiliate in reaching target groups, geographic areas with limited
access to screening, and the un/underinsured. Mobile mammography and support of
transportation services should help in allowing access to screening and treatment across the
entire continuum of care.
Asset mapping within the three priority regions also shows health department coverage in every
county. Therefore, partnerships with local health departments to assist in reaching the
Black/African-American, Hispanic/Latino, uninsured, and Appalachian populations would be
beneficial. Promotion of the Kentucky Women's Cancer Screening Program and Kentucky
Cancer Consortium by the Affiliate should help increase awareness of these programs among
low-income and uninsured women.
Breast cancer support groups are not present in many service area counties. This may
represent an area of unmet need for those living within counties without support groups. Breast
cancer survivor surveys indicated the need for a fixed meeting place. Komen Lexington can
assist in meeting this need by providing information or assisting with advocacy to existing
community partners. One possibility is a partnership with the county health departments, faithbased organizations, or cooperative extension offices to both provide a consistent meeting
location and to be a location of information for Affiliate educational material.
In addition to the aforementioned partnerships, Komen Lexington should partner more with local
community health centers in order to provide educational material and brainstorm how the
amount of resources can be increased, particularly in the two Appalachian Priority regions. The
Affiliate has a good relationship with churches within Fayette County through the Pink the Pews
program, and opportunities to expand this outreach in other target counties exist. It is important
that Komen Lexington maintains a working relationship with public health organizations.
The Affordable Care Act should have a large impact on policy and breast health care. With
Kentucky's Medicaid expansion and goal to insure every resident, the Affiliate expects
increased access to breast health services to become available in future years. Greater
involvement in advocacy and policy work is an opportunity for the Affiliate to expand services to
the community. The Affiliate is motivated to expand their involvement with policy by attending
future advocacy events, continuing to partner with the Kentucky Cancer Consortium, staying
aware of Affordable Care Act changes and possible implications for the Affiliate, and
investigating how Komen Lexington can increase awareness of the importance of breast cancer
screenings and support services and how that awareness could affect policy changes.
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Qualitative Data: Ensuring Community Input
Qualitative Data Sources and Methodology Overview
Methodology
Susan G. Komen Lexington used multiple methods of data collection for the qualitative portion
of the Community Profile Report:
 Breast cancer survivor surveys were given to individuals who are residents in one of the
three target communities who have had breast cancer. Two surveys were from the
Appalachian Priority 1 region, two surveys were from the Appalachian Priority 2 region,
and 36 surveys were from the Minority target region. A section in the breast cancer
survivor survey offered an opportunity for survivors to describe their breast cancer
experience through open-ended questions.
 General population surveys were given to individuals who are residents in one of the
three target communities who were not a breast cancer survivor. This includes both
community members and health care professionals. Thirteen surveys were from the
Appalachian Priority 1 region, one survey was from the Appalachian Priority 2 region,
and 168 surveys were from the Minority target region. No open-ended questions were
asked on the general population surveys.
 Four focus groups were conducted. Three were held in the Minority target region, and
one was held in the Appalachian Priority 1 region.
 Key informant interviews were sent via email to the directors and main breast cancer
staff at the health departments in the three target communities. Additionally, one key
informant interview was done in person, and the other key informant interviews were
done via telephone with community members who hold key positions. Twelve key
informant interviews were conducted for each priority target region, for a total of 36 key
informant interviews.
 Four breast cancer survivors were interviewed extensively in person to gain qualitative
knowledge of their experience and to facilitate further development of the survivor survey
and general population survey. These survivors were from the Minority target region three from Fayette County and one from Bourbon County.
This variety of data collection techniques allowed viewpoints of individual community members,
breast cancer survivors, community groups, and individuals with specialized knowledge
regarding their community breast health to be gathered and compiled for aggregate analysis.
Utilizing this variety of data collection techniques, a robust view of the Affiliate's three Priority
Target regions was obtained.
The Affiliate found during the 2011 Community Profile that surveys were easy to use and
collected a lot of information quickly. Also, surveys can be easily tweaked to fit the Affiliate's
needs, tailored to specific populations (breast cancer survivors or general population), and
survey links can be easily shared online within the target region to reach many communities.
Focus groups are a good tool to use when there are a small number of key individuals together
in one place. Very detailed questions can be personalized and asked to a small audience, which
is helpful in collecting thorough answers from vital community members in a comfortable
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environment. However, in rural communities these are often difficult to arrange, especially in
seasons of inclement weather, due to transportation and geographic barriers.
Key informant interviews are helpful in seeking out specific answers to questions from a
particular population. Health department directors offer knowledge regarding breast health from
an administration viewpoint, while breast cancer staff at health departments and other key
informants provide a unique patient care perspective regarding challenges to women receiving
timely breast care and the changes that may be needed.
Breast cancer survivor interviews were utilized to gain a personal point of view regarding the
patient experience through diagnosis, treatment, and recovery. Understanding the patient’s
experience as they progress through the Continuum of Care can help the Affiliate and breast
care facilities improve diagnosis and treatment protocols, facilitate better recovery, and improve
survivorship experiences.
For the breast cancer survivor surveys, the main questions the Affiliate was interested in were:
 Survivors' experience in getting information on their breast cancer.
 Basic informational questions regarding their familiarity with Susan G. Komen Lexington,
Kentucky Women's Cancer Screening Program, and how the implementation of the
Affordable Care Act has affected them.
 Survivors' opinion on their overall medical care during their breast care experience.
 Breast cancer screening and diagnosis questions such as prior screening to diagnosis,
how their breast cancer was found, and what stage their breast cancer was at diagnosis.
 Survivors' experience concerning whether they received adequate information on postop care, side effects of treatment, complimentary/alternative therapies, and where to get
medical supplies.
 Suggestions for improvement of the continuum of care experience including: diagnosis,
treatment, availability of resources, follow-up care, and survivorship.
 Basic demographic information including: sex, age, marital status, health insurance
status, employment status, county of residence, zip code, race/ethnicity, LGBTQ status,
annual household income, and highest level of education.
For the general population surveys, the main questions the Affiliate was interested in were:
 Determining education level on breast cancer topics: can men have breast cancer; does
breast cancer occur only after age 40; is there a higher risk if a family member has had
breast cancer; and if the responder considers themselves educated about breast cancer.
 Where the respondent would prefer to go first if they needed breast health medical
services.
 What the respondent thinks are the most effective ways to provide breast health
information to the residents in their community.
 Basic informational questions regarding their familiarity with Susan G. Komen Lexington,
Kentucky Women's Cancer Screening Program, and how the implementation of the
Affordable Care Act has affected them.
 Screening and prevention questions on whether the respondent performs regular self
breast exams; if they have ever had a clinical breast exam; if they have ever had a
mammogram and if so, how long ago since their last mammogram and if they get one
annually; and if they do not get mammograms, why not. Note: Susan G. Komen utilizes
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breast self-awareness messaging because breast self-exams are not an evidence-based
practice. To learn more about breast self-awareness, go to
http://ww5.komen.org/BreastCancer/BreastSelfAwareness.html .
Basic demographic information including: sex, age, marital status, health insurance
status, employment status, county of residence, zip code, race/ethnicity, LGBTQ status,
annual household income, and highest level of education.
Focus group questions were developed and adjusted based on the theme of each focus group.
For the four focus groups the Affiliate conducted, there were two different themes. One focus
group was comprised of community members and partners and held in the Appalachian Priority
1 region, and the other three groups were minority focus groups consisting of Hispanic/Latino,
Black/African-American, and health care workers/patient navigators held in the Minority target
region. Focus groups were unable to be conducted in the Appalachian Priority 2 region due to
low turnout. The questions the Affiliate was interested in for the community members and
partners focus groups were:
 Do they know what Susan G. Komen does/does not do?
 How Susan G. Komen can best serve their needs?
 What would help their community regarding breast cancer?
 What are some barriers to breast cancer screening/treatment?
 What ideas do they have for partnerships with Susan G. Komen Lexington in their
community?
 What can Susan G. Komen Lexington do to better the relationship so they know the
partnership is making a difference in their community?
The questions the Affiliate was interested in for the minorities focus groups were:
 Do they know what Susan G. Komen does/does not do?
 How Susan G. Komen can best serve their needs?
 What would help their community regarding breast cancer?
 What are some barriers to breast cancer screening/treatment?
 What are some of the cultural sensitivities/understandings that health care professionals
or Susan G. Komen Lexington should know in working with communities of color or with
racial minorities?
Key informant interviews were a vital part of the data collection process. This was especially
important in Priority target regions. Key informants provide a viewpoint of experience for their
particular region and community that is often unknown to those outside the community or
program. Key informant interviews questions included:
 Where community members get breast health information in their community.
 Where low income or underserved women in their community go to for routine breast
health care and how they pay for it.
 What breast health education, outreach services, and after care or follow-up to treatment
the health department provides.
 What they think is the most effective way to disseminate breast health information.
 What specific groups of women do they feel have a particular need for breast health and
breast cancer services.
 What the top barriers are to getting routine breast health care, and what can be done to
reduce these barriers and improve access to care.
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Whether or not most minority or underserved women in their community seek regular
breast health screening and if not, what are the reasons why e.g., cultural factors or
reasons.
What motivates women to obtain regular mammograms.
What recommendations they have to improve breast health care services.
The type of programs they believe that would make it easier for women to access breast
health services.
Who Susan G. Komen Lexington could partner with to disseminate information on breast
health and screening, and where the Affiliate should prioritize funding.
One additional key informant interview was done in person with a social worker who is part of a
Psych-Oncology unit at a local cancer center in the Minority target region. Topics covered in this
interview included: needs of the cancer patients seen, community partners of the team works,
and services and supplies the team would like to access.
Four breast cancer survivor interviews were done in person with the goal of gaining an in-depth
look at the breast cancer journey from diagnosis, to treatment, and through survivorship from
four different perspectives. These survivors were from the Minority target region.
Breast cancer survivor and general population survey data were collected both in paper and
electronic formats. For electronic data collection, emails were sent out individually to local
organizations, on listservs, and posted on social media to encourage survey completion.
Surveys completed online were automatically recorded into the REDCap program that was used
to design surveys. Paper surveys were handed out in person to anyone who agreed to take the
time to fill out one. All paper surveys were manually entered into REDCap. All surveys were
anonymous, and no identifying information collected on the surveys were connected with
individual participants.
Focus groups were conducted by the Affiliate's Director of Mission and Outreach and the
Community Profile Consultant. Focus group participants were asked to sign a consent form.
Focus groups were recorded via digital voice recorder, and notes were taken as participants
spoke. Recordings were transcribed by the Consultant and compared to notes taken during the
meeting to obtain the most complete record of responses. All responses were transcribed
anonymously.
Key informant interviews were conducted via email, in-person, and by telephone. All health
department director interviews were done through email. Key informant interview questions
were emailed to potential participants and they responded on their own time. Responses were
sent back through email or were mailed to the Affiliate office. The one in person key informant
interview response was written down by hand, then converted to electronic format by the
Consultant. The remaining key informant interviews were done via telephone. Responses were
transcribed electronically while the interviews were taking place. Breast cancer survivor
interviews were conducted by the Director of Mission and Outreach and the Consultant.
Responses from survivors were handwritten by the consultant during the interview, and then
converted to electronic format.
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Data collection methods allow for triangulation of findings in different ways. REDCap, a program
which enables users to export data and run reports and statistics, made calculating averages
and tallying responses for each question asked on the surveys simple and efficient. Focus
group and key informant responses were separated based on theme and then tallied to see
which responses came up most frequently. Since a small number of breast cancer survivor
interviews were completed each of these interviews were looked at individually to identify
common themes to utilize in development of the general population and survivor surveys.
Sampling
The population of interest from the target communities in relation to key questions varied. For
the community members and partners group held in Clay County the Affiliate tweaked the
questions asked during the focus group to include questions about partnerships between the
Affiliate and those in that target community, and what can be done to improve the partnerships.
All counties in the Appalachian Priority 1 region were represented at this focus group. For the
three minority focus groups held in Fayette County, the last question was tweaked to include a
part about cultural sensitivities/understandings. Only Fayette County residents attended the
three minority focus groups; however, the race/ethnicity and background of participants varied
widely. All other focus group, health department director, and key informant interview questions
were kept the same in each target community to see how responses varied or stayed the same
in each region, except for one key informant interview in the Minority target area.
Breast cancer survivor and general population surveys were distributed through:
 Email
 The Affiliate's social media websites
 Through listservs of board members and community partners such as the Kentucky
Cancer Coalition
 In person (e.g., whenever outreach was being done in the community)
A convenience sample was used to collect surveys. For in person surveys, individuals were
asked to complete a survey and complied if they wanted to and had the time. Survey invitations
sent via listservs, Affiliate partners, and social media also utilized convenience sampling. Any
electronic survey invitations might have had an element of snowball sampling as well, as emails
advertising the survey through listservs, partners, and grantees asked them to send to as many
people/organizations as they could. The only exclusion for completing a general population
survey was if the individual was a breast cancer survivor. The only inclusion for the breast
cancer survivor survey was that the individual had to be a breast cancer survivor. In the
Appalachian Priority 1 region, 13 general population surveys (no Owsley County participants),
and two breast cancer survivor surveys were received (no Owsley County participants). In the
Appalachian Priority 2 region one general population survey was received from Wayne County,
and two breast cancer survivor surveys (both from Clinton County) were received. In the
Minority target region, 168 general population surveys and 36 breast cancer survivor surveys
were received (all counties in this region were represented in both surveys).
A convenience sample was used for focus groups, as all four groups were conducted via a prescheduled meeting. In Clay County the community members/partners group was held during a
health coalition meeting, and in Fayette County the three groups were held during an outreach
meeting. The Affiliate found it was easiest to host focus groups by piggybacking onto another
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meeting, as there would be an audience already there. For the Clay County focus group, all
participants to the meeting that day were included in the focus group, as all attendees either
lived, worked, or both in the Appalachian Priority 1 region. The sample size for the Clay County
focus group was 17 members. For the three Fayette County focus groups, the theme of
minorities was chosen because of the high population of minorities in that region. All participants
at the meeting that day were included in the focus groups, as all attendees either lived, worked,
or both in the Minority target region. The sample size for the three focus groups were five
Hispanic/Latino; 10 Black/African-American; and eight White and one Asian in the health care
workers/patient navigators group, for a total of 24 participants for three groups in the Minority
target region.
All health department directors in each target community were emailed a key informant
interview questionnaire to fill out. In addition, health departments were called and an attempt
was made to email a questionnaire to the main breast cancer staff in each target community.
Purposive sampling was used to get these key informant interviews. The only inclusion for the
health department director interview was the individual had to be a health department director
for a specific county or health department district within one of the three target communities. If
individuals worked at a health department within one of the three target communities and dealt
with breast health or cancer, then they were included in the breast cancer staff key informant
interviews. Five of eight health department directors participated.
Purposive sampling was utilized to gather thirty-one other key informant interviews (besides
those from health department directors), totaling 36 interviews with 12 for each target region. All
but one of these interviews occurred via telephone. The only inclusion for getting interviewed as
a key informant was the individual had to either live, work, or frequently serve residents from
one of the target counties through their organization/workplace. The breakdown of who was
interviewed and from which county follows.
Appalachian Priority 1:
 Clay County - Health Department RN, Health Department Office Manager, Radiology
Supervisor at Manchester Memorial Hospital, and Extension Agent for Family and
Consumer Sciences.
 Jackson County - Extension Agent for Family and Consumer Sciences, Cancer Partners
Coalition Leader, rural health clinic staff member, and Head RN at Rockcastle Regional
Hospital.
 Owsley County - Owsley County Medical Center Clinic Administrator, Regional Cancer
Control Specialist for Kentucky Cancer Program, Radiology Supervisor at Kentucky
River Medical Center, and Community Action Council Office Manager.
Appalachian Priority 2:
 Clinton County - Health Department RN, Extension Agent for Family and Consumer
Sciences, Assistant Director of Clinton County Hospital, and Clinton Family Medical
Center Case Manager.
 McCreary County - Extension Agent for Family and Consumer Sciences, South Fork
Medical Clinic Lead RN, McCreary Family Medical Center Office Manager and Kynector,
and a breast cancer survivor who lives in Wayne County but works in McCreary County.
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
Wayne County - Health Department RN, Wayne County Hospital Radiology Manager,
Monticello Medical Associates Rural Health Clinic Office Manager, and a Kentucky
Cancer Program staff person for the Lake Cumberland Region.
Minority Target Region:
 Anderson County - individuals were contacted but no interviews during the data
collection period were obtained.
 Bourbon County - Health Department Health Coordinator.
 Clark County - Health Department Head RN, and Health Department Director.
 Fayette County - Area Health Education Center Community Programs Director, Baptist
Church Office Manager, Psych-Oncology Social Worker at Markey Cancer Center, and
Health Department Director.
 Scott County - Health Department Public Health Services Manager, Medicaid worker,
and Health Department Director.
 Woodford County - Health Department RN, and Health Department Director.
The four breast cancer survivors were found through purposive sampling in the Minority target
region. Two survivors were found by asking a local breast care coordinator who she would
suggest to interview. A third survivor is a member of the Affiliate's Colors of Promise coalition,
and the fourth survivor is an Affiliate volunteer. Each survivor met with the Consultant and
Director of Missions and Outreach in person for an interview about their breast cancer
experience. Survivor age ranges were two women in their forties, one in her fifties, and the other
in her sixties. The only inclusion to be interviewed was that the individual had to be a breast
cancer survivor.
Ethics
All survey, focus group, and interview participants were made aware of the purpose of the
Community Profile and that the information they provide will help in what tailored resources the
Affiliate supplies within the next few years. Any questions were answered to the best of the
Team member’s capability. If more information was needed on how target communities were
chosen or about the Community Profile process, then this information was provided.
Anonymity of sources was protected throughout the Profile process. No information directly
connecting the survey participants to the survey they filled out was collected. Although
information such as zip code, age, income level, and county of residence were asked, these
were reported in aggregate. When key informants completed interviews the Affiliate knew which
interview occurred in which target region, but did not report the name of the individual for
confidentiality purposes. When focus group responses were recorded and dictated, individual
responses were kept anonymous. The Affiliate was aware of which survivor gave which
interview, but none of their names were connected to the responses in the final report.
All focus group, health department director, key informant, and survivor interviews were saved
on a flash drive used only for Community Profile data. Surveys were recorded online via
REDCap software, and accessed only through a username and password. Consent forms were
used for all four focus groups. Verbal consent was given for key informant interviews; if any
individual did not agree to an interview at point of contact the interview did not proceed further.
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Qualitative Data Overview
Format of original data varied based on data tools. Surveys were taken both on paper and
electronically. Key informant interviews were emailed to participants to fill out, and some
interviews were completed over the phone by calling interviewees and asking them the interview
questions. One key informant interview was done in person, and their responses were written
down on paper, and later transcribed non-verbatim electronically. No digital voice recorder was
used during key informant interviews. Key informant interview responses were also organized
using an Excel spreadsheet, so responses were in a central document. Focus group data were
written down on paper and recorded at the same time. Later, the data were transcribed nonverbatim electronically. Focus group data were collected both by hand and through a recorder.
Written data were taken so the main points could be noted as soon as the participant had
spoken them, and a recorder was used to supplement written notes. Survivor interviews were
written down on paper and did not follow a script of any kind, unlike the key informant
interviews. Later, all survivor interviews were transcribed non-verbatim electronically. No digital
voice recorder was used in survivor interviews.
The Affiliate chose the data management methods for several reasons. REDCap was chosen to
design and store surveys based on ease of use, confidentiality of response storage, and tools
available post-collection that allow statistical tests to be run. Recordings of focus groups were
stored on the digital voice recorder, which made it easy to replay them as needed. Written
responses were typed up and stored on a flash drive, making it simple to access and review the
files, and manage their location.
Themes were developed in different ways. For focus groups, there was a small number of
questions (eight for the community members/partners, and seven for minority groups). This
allowed for the Affiliate to make condensed themes. The Affiliate looked at the questions asked
during the focus groups, determined the similarities and differences between these questions,
and made the decision to separate them based on these characteristics. For the focus groups,
four themes were deduced from the questions asked.
The Affiliate utilized its 2011 Community Profile surveys as the building block for the 2015
surveys. The 2015 survey was developed to improve upon the 2011 survey based on
retrospective knowledge of which questions were successful /not successful in capturing the
topics of interest. The breast cancer survivor survey and general population survey each had
three themes: information and education concerns, knowledge about available resources within
the community, and identification of disparities. These themes allowed for easier disparity
identification within the target communities.
Themes for key informant interviews were developed by first looking for common, reoccurring
words in questions asked during the interviews. Then a list of key words that appeared in the
questions was made, including words such as "screening", "access", and "services". Next, the
words were condensed into similar topics or topics that pair well together logically. Finally, a
subtheme was decided on that fit into a main theme but was different enough to be considered
separate (while still falling along the same lines). Four themes and one subtheme were
determined. Because many questions were asked during the interviews (as well as the
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surveys), the ones presented in the tables are questions deemed most pertinent taking into
account the results from the Affiliate's Quantitative Data Report and Health Systems Analysis.
Themes for the breast cancer survivor interviews were developed by reading each individual's
story, and noticing commonalities of topics between the interviews. It was determined that
seven themes appeared to some extent in each of the four interviews.
Appalachian Priority 1 Region
Focus group
Table 4.1 shows the responses from the community members/partners focus group held in Clay
County.
Table 4.1. Community members and partners focus group - Appalachian Priority 1
Themes
Example or explanation
Susan G. Komen organization
What does Komen do?
Provide educational materials, promote women's health, conduct research
What doesn't Komen do?
Does not cover the entire Commonwealth of Kentucky
Serving the needs of the community
How can Komen best serve your needs?
Funding, make sure there is an understanding of services, make sure those who
need resources receive them (identifying these individuals)
What would help your community regarding
breast cancer?
Treatment closer to home, educational awareness, availability of resources
Barriers
Barriers to breast cancer screening?
Fear, apathy, embarrassment, time constraints, lack of education, afraid radiation
will cause it
Barriers to breast cancer treatment?
Access to treatment, transportation, cost
Partnerships in the community
Ideas for partnerships in the community?
Outreach in clinics, using Komen funding, working with those that fall through the
cracks, sponsorships, name of Susan G. Komen Lexington, attend local events
How can Komen better the relationship so you
know the partnership is making a difference?
Improved communication, partner with individuals attending the focus group,
attend local events
Participants believed Komen Lexington provides outreach, advocacy, and education, but
doesn't provide funding/help to all individuals in Kentucky. The Affiliate can best serve
participants needs by being a funder, making sure there is an understanding of services, and
making sure those who need services get them. What would best help their communities
regarding breast cancer is treatment closer to home, educational awareness, and availability of
resources to aid in increased help for individuals. Fear, apathy, embarrassment, time
constraints, lack of education, and fear that radiation causes it seem to be barriers to breast
cancer screening. The main barriers to treatment appear to be cost, transportation, and access
to the health care system. For the community members and partners focus group, ideas for
partnerships in the community include more outreach, Komen funding, helping individuals who
fall through the cracks, sponsorships, changing the name of Komen Lexington, and attending
local events. With regards to how Komen can better their relationships with community partners,
the main ideas were partnering with more local organizations and events, and communicating
more.
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Breast cancer survivor surveys
The breast cancer survivor survey collected information from residents of the priority
communities about the breast cancer continuum of care from a survivor’s experience.
Responses pertaining to the priority target communities fell under three themes: information and
education concerns, knowledge about available resources within the community, and
identification of disparities. Information and education concerns included: only half of
respondents felt they understood all of the information they were given; all respondents said it
took a lot of time and effort to get all the information needed; 50 percent felt frustrated during the
search, and 100 percent were concerned about the quality of the information; only half of
respondents said that their doctors listened carefully and showed respect, involved them in
decisions about their health care as much as they wanted, and they felt comfortable asking
questions. Concerns involving available resources within the community included: only one-half
knew that Komen Lexington served their county; only half had heard of the Kentucky Women's
Cancer Screening Program; regarding the impact the Affordable Care Act has had on them, half
reported no change, and the other half said they could no longer seek medical services if
needed; no respondents performed/received self-breast exams, only 50 percent said they had
had mammograms and/or clinical breast exams, and fifty percent said they did none of these on
a regular basis; for individuals who did not perform or receive any form of exam prior to breast
cancer diagnosis; all found their breast cancer themselves and at an early stage; none were
informed of complimentary, alternative, or unconventional therapies. Concerns regarding
identified disparities among respondents include: only half had health insurance; half were
White (this is important given the population of their communities is over 98 percent White,
showing a health disparity among minority Non-White/Non-Hispanic survivors); half had less
than a high school education while the other had a high school/GED; half had an annual
household income of less than $25,000, and the other half had income between $35,00049,999. Survey responses were gotten from Clay and Jackson Counties. Race/ethnicity, health
literacy, educational attainment at high school or less, and poverty are identified as disparities
among survey participants within this priority target community. Table 4.2 shows the openended questions asked regarding suggestions for improvement provided by breast cancer
survivor survey respondents.
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Table 4.2. Suggestions for improvement - breast cancer survivors in Appalachian Priority 1
Regarding diagnosis, what ideas do you have to
improve the experience? What was helpful to you
during diagnosis?
Regarding treatment such as surgery,
chemotherapy, radiation, etc., what ideas do you
have to improve the experience? What was helpful
to you during treatment? What do you wish you had
known during treatment that you know now?
What resources (e.g. transportation, educational
materials) did you need during diagnosis and
treatment? Were you able to access these
resources?
More education and support as to what is happening to you.
More education about options to help you besides medicines, e.g.,
chiropractic, massage, holistic, herbs, etc.
I was blessed to access all of these.
Regarding follow-up care, what ideas do you have
to improve the experience? What was helpful to
you?
More information about what to do to improve your chances of not having a
recurrence.
Regarding survivorship, what ideas do you have to
improve the experience? What advice as a survivor
would you give someone recently diagnosed?
Use nausea medications regularly, learn how to deal with side effects,
positive outlook, spirituality very important, take care of yourself.
Regarding diagnosis, more education and support as to what is happening to you was the given
idea to better the experience or what was most helpful during diagnosis. When asked about
treatment, more education about options to help you besides medicines, chiropractic, massage,
holistic, and herbs were the ideas to improve the experience, what was most helpful, or what
they wish they had known. Regarding resources they needed, one respondent said they were
lucky to access all they needed. For follow-up care, to improve the experience or what was most
helpful was more information about what to do to improve your chances of not having a
recurrence. Regarding survivorship, staying positive, taking care of yourself, using nausea
medications regularly, learning how to deal with side effects, and spirituality were the given
pieces of advice for someone recently diagnosed.
General population surveys
The general population survey collected information from residents of the priority communities
about basic breast cancer knowledge and screening habits. As with the breast cancer survivor
survey, responses pertaining to the priority target communities fell under three themes:
information and education concerns, knowledge about available resources within the
community, and identification of disparities. Information and education concerns included: over
91 percent of respondents said that men can have breast cancer, that breast cancer can occur
before age 40, and that you have a higher risk of breast cancer if you have/had a family
member with breast cancer; just over 61 percent considered themselves educated on breast
cancer; over 53 percent would prefer to go to an OB/GYN first for medical services, followed by
a specialty physician then family physician; the most effective ways they thought to provide
breast health information to their community were health events, radio, and newspaper at 76.9
percent. Concerns involving available resources within the community included: only 38.5
percent knew that Susan G. Komen served their county; 61.5 percent had heard of the
Kentucky Women's Cancer Screening Program; over 53 percent reported no change due to the
implementation of the Affordable Care Act, 15.4 percent were unsure of how it affected them,
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and 23.1 percent reported now being able to seek medical services; over 46 percent stated they
perform regular self-breast exams, 84.6 percent have had a clinical breast exam, and 80
percent have had a mammogram; for individuals reporting they do not get mammograms, the
most common reason why were they are under age 40. Concerns regarding identified
disparities among respondents include: all respondents stated they had health insurance; over
76 percent were White, followed by 23.1 percent Black/African-American; the majority of
respondents make $75,000 a year or above, followed by $50,000 - $74,999 and $35,000 $49,999; and highest level of education was graduate/professional degree at 46.2 percent,
followed by 4-year college degree (38.5 percent). The most surveys were received in Clay
County (8) followed by Jackson County (5). Race/ethnicity and health literacy are identified
disparities among general population survey participants within this priority target community.
Survey comparisons
The two surveys targeted different populations. One was solely for breast cancer survivors, and
the other one was for anyone but a breast cancer survivor. Diverse questions were asked
because the Affiliate chose to look at two different populations using surveys. There were
similar themes between the surveys. Both surveys asked if Komen Lexington served their
county. Fifty percent of breast cancer survivors said yes compared to 38.5 percent of the
general population. When asked if they had heard of the Kentucky Women's Cancer Screening
Program, 50 percent of breast cancer survivors said yes as opposed to 61.5 percent of the
general population. Regarding the impact the Affordable Care Act has had on them, no change
was the commonly given answer, with 50 percent of breast cancer survivors and 53.8 percent of
the general population saying this. Also, 50 percent of breast cancer survivors said they could
no longer seek medical services if needed; no one in the general population stated this.
The first question on the general population survey asked participants if they were a breast
cancer survivor; if yes, they were given the breast cancer survivor survey to fill out. If no, the
assumption was made that all general population survey participants were not breast cancer
survivors. Therefore rates of self-breast exams, clinical breast exams, and mammograms before
cancer diagnosis should be comparable to current rates among the general population. Before
breast cancer diagnosis, 0 percent performed self-breast exams, 50 percent had had
mammograms, and 50 percent had clinical breast examinations. This is compared to 46.2
percent of the general population performing self-breast exams, 80 percent having
mammograms, and 84.6 percent having a prior clinical breast exam. Mammography rate is
higher for the general population, breast cancer survivors reported no self-exams, and the
general population reported more clinical breast exams. Health insurance rates were 50
percent for survivors, and 100 percent for the general population. Both surveys had responses
in Clay and Jackson Counties. Service area percentage of White individuals is 93.7 percent.
The race/ethnicity of breast cancer survivors was 50 percent White compared to that of the
general population (76.9 percent White), which more closely mirrors the service area. Breast
cancer survivors did not have a household income over $50,000, while the general population
income majority was over $75,000. Survivors did not have more than a high school diploma or
equivalent, while most of the general population surveyed had at least a 4-year college degree.
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Key informant interviews
Table 4.3 shows key informant interview responses from the Appalachian Priority 1 region.
Table 4.3. Key informant interview highlights - Appalachian Priority 1 Region
Themes and Subthemes
Responses included:
Screening
In your opinion, what motivates
women to obtain regular
mammograms?
Family history of breast cancer; preventive care/doctor encouragement; if they hear others
talking about it and view it as a positive thing not just another test - learning why is
important; a good female role model; education; their own need to have good health - it
has to be their decision and they have to have a motivation, not forced; seeing other
people have cancer and feel that they too are at risk after seeing other people’s
experiences; a healthy fad at the moment; improvement of cancer treatments and
technologies; word of mouth
Minorities
What are the common reasons why
minority or underserved women do not
seek breast health screening
(mammogram, clinical breast exam)?
Are there cultural factors or reasons
that can explain why minority and
underserved women do not have their
mammograms?
Hasn't been routine for family members and no example of preventive health; cost; don’t
like exam or mammogram; low education level; feel it isn't going to happen to them; fear;
some women won't go because their husbands don’t want them to go (viewing their wives
breasts); lack of interest; unaware of how important it is; feel they don't need to; don't
understand there is help to pay for it; don't care because they're not affected personally;
available information and transportation; scared of the results
Low level of education regarding preventive health; or if a lump is found, they don’t go for
fear of cost/that it could be cancer; husband's opinion is part of the Eastern culture; in a
rural area, materials need to be a lower reading and understanding level for residents
Information and Services
What do you think is the most effective
way to disseminate breast health
information to the residents of your
community?
Is there a particular group of women
that you feel have a particular need for
breast health and breast cancer
services in your community?
What would be you recommendation
to improve breast health care services
in your community?
Community outreach (not cost effective); increased communication with PCP (wouldn't
work unless moderate time was spent on educating patients regarding preventive health
care); mailings, but probably most effective in provider offices; education programs;
leaflets; flyers; displays; local doctors or any kind of public relations (social media); radio;
PRTC (local TV) ads; newspaper; educational material in health department; go where
they are; don't expect them to come to events; information in OB/GYN offices
Women ages 35 and older; 20-30 year olds need to learn how to do self breast exams
and have clinical breast exams done annually instead of waiting years in between to get it
done; low income because they won’t go without the money; the elderly (65+); the young
that think it won't happen to them; women over 40; uninsured and ones with high
deductibles; all women - it is a major need; women that fall just below the screening age
(30s); any woman over 50.
Communication; education; push more information; TV spots targeted for eastern
Kentucky, general education so that women would know that it's okay; get out into the
community and promote; more information at local doctors; getting the word out that
services are available to them; having available information to provide to give to patients;
the need to have follow-ups; more access to screenings and hospitals in rural
communities
Barriers and Access
What do you think are the top barriers
that keep women from getting routine
breast health care in your community?
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Education status; socioeconomic status; not routine in family traditions; cost (even at the
health department cost goes by income and not completely free for some); fear;
transportation; mindset of it won't happen to them; embarrassment/shyness; awareness of
available services; communication; the problem of cancer isn’t a big deal until they
actually are diagnosed with it (they aren’t interested in risk reduction); doctors also aren’t
making sure to ask patients about screenings at their other appointments; scared
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What do you think needs to be done to
reduce these barriers or improve
access to breast health care?
Educate on a one on one basis (not cost effective); educate more while patients are in
clinics or health departments on the importance of preventive care - not to aggravate the
patient but to help them out; getting the community involved; doing more than just
advertising; go to the patients, not have the patients come to them; get the word out that
programs are available for assistance; more advertisement; more communication;
educate on when to be screened and symptoms to watch for; educate doctors on talking
to their patients about holistic problems; gas card program
Funding
In your community where do you
believe Susan G. Komen for the Cure
should prioritize funding?
Educational materials in hospitals, clinics, on TV, in newspapers, social media; community
outreach; help with cost; most people aren't willing to risk a large bill for a service if they
feel it isn't necessary; money for diagnosed individuals - patient services (gas cards);
transportation services; health department; extension agency; local medical clinics; mobile
mammography
Twelve key informant interviews were done in the Appalachian Priority 1 region. Motivation for
obtaining regular mammograms included these most frequently given responses: having a
family history, doctors informing and motivating them, their own need to take care of
themselves, and word of mouth. Most common reasons why minority or underserved women do
not seek screening were cost, low education level, feel it isn't going to happen to them,
transportation, and unaware of the importance. Cultural factors or reasons that might explain
this were low levels of education and fear that any issues could be cancer. The most effective
ways of disseminating breast health information were thought to be increased communication
with doctors, mailings, brochures and flyers, advertising through TV/radio/social
media/newspaper. There was no consensus and many ages of women given that they deemed
most in need of breast cancer services. Recommendations to improve breast health care
services were education, getting the word out regarding available services, and more access to
screenings in rural communities. Top barriers that keep women from getting routine breast
health care were education status, income status, transportation, not aware of available
services, and fear. To reduce these barriers, key informants suggested educating more while
patients are in clinics, getting the word out about available services, and transportation help.
Suggested priorities of funding were educational materials through various media, help with cost
and patient services, help with transportation, and mobile mammography.
Additional questions were asked during the key informant interviews. When asked where low
income or underserved women go for routine breast health care, 7 out of 12 said health
departments, 2 out of 12 said OB/GYNs, 4 out of 12 said primary care doctors, and 4 out of 12
said hospitals. Suggestions of who to partner with to disseminate information on breast health
and screening were as follows: 8 out of 12 said health departments, 6 out of 12 doctors, 4 out of
12 hospitals, 2 out of 12 said cancer liaisons, and 3 out of 12 said extension offices. When
asked if they believed most minority or underserved women seek regular breast screening, 10
out of 12 said no, and 2 out of 12 said yes and that they seek it out more than they used to.
When someone needs breast health information, 9 out of 12 said they go to health departments,
3 out of 12 said OB/GYNs, 5 out of 12 said primary care physicians, 1 out of 12 said hospitals,
and 1 out of 12 said a nonprofit. Key informants gave suggestions for the kinds of programs that
would make it easier for women to access breast health services. These included: guaranteed
free service, community programs for education, making more services available, frequent visits
from mobile mammography units, offering free or discounted mammograms for one specific
month, some kind of incentive program, possibly tying in art and educational pieces, working
with local clinics, more direct contact with patients, transportation programs (especially for
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counties far away from hospitals - maybe a bus transportation system), making people aware of
available resources, a Healthy Women program that goes out into the community, and a
survivor program.
Appalachian Priority 2 Region
Information and education concerns included: half of respondents felt they understood all of the
information they were given, said it took a lot of time and effort to get all the information needed;
felt frustrated during the search, and were concerned about the quality of the information; all
respondents said that their doctors listened carefully and showed respect, involved them in
decisions about their health care as much as they wanted, and they felt comfortable asking
questions. Concerns involving available resources within the community included: none knew
that Komen Lexington served their county, nor had heard of the Kentucky Women's Cancer
Screening Program; regarding the impact the Affordable Care Act has had on them, half
reported no change, and the other half said they could now seek medical services if needed;
prior to diagnosis, all respondents performed/received self-breast exams and/or clinical breast
exams, while 50 percent said they had had mammograms; all found their breast cancer
themselves, and half were diagnosed at a late-stage (3 or 4); none were informed of
complimentary, alternative, or unconventional therapies. Concerns regarding identified
disparities among respondents include: all had health insurance and were White; all had a 4year college degree and an annual household income of $75,000 or above. Both surveys were
from Clinton County. Health literacy was identified as a disparity among survey participants
within this priority target community. Table 17 shows the open-ended questions asked regarding
suggestions for improvement provided by breast cancer survivor survey respondents.
Table 4.4. Suggestions for improvement - breast cancer survivors in Appalachian Priority 2
during diagnosis?
resources?
you?
I live in a small community and I wasn't offered any services from the Komen
foundation; moving forward with treatment quickly
It was easy to talk to my doctors and I felt like they listened
Got all the resources I needed
None
You will get through it once you have a plan; sometimes getting a plan is the
biggest obstacle; pray fully and really consider all options; really look
extensively at all the information regarding side effects
Regarding diagnosis, one respondent wishes that Komen had offered services, and the other
suggested moving forward with treatment quickly. When asked about treatment, one survivor
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said it was easy to talk to their doctors, and they felt like they listened. They also said they
received all the resources they needed. No suggestions were given for follow-up care.
Regarding survivorship, making a plan (which can be a big obstacle), prayer, consideration of all
options, and looking extensively at all information regarding side effects was suggested.
There was only one respondent in this target community. Information and education concerns
included: the respondent said that men can have breast cancer, that breast cancer can occur
before age 40, and that you have a higher risk of breast cancer if you have/had a family
member with breast cancer; they considered themselves educated on breast cancer; they would
prefer to go to an OB/GYN first for medical services; the most effective ways they thought to
provide breast health information to their community were health events, radio, and newspaper.
Concerns involving available resources within the community included: they knew that Susan G.
Komen served their county and had heard of the Kentucky Women's Cancer Screening
Program; they reported no change due to the implementation of the Affordable Care Act; they
stated they perform/receive regular self-breast exams, clinical breast exams, and
mammograms. Concerns regarding identified disparities among respondents include: they had
health insurance and were White; they made $75,000 a year or above, and had a 2-year college
degree. The survey came from Wayne County. No disparities were noted within the responses
of this participant.
Survey comparisons
Both surveys asked if Komen Lexington served their county. The breast cancer survivors said
they did not know, compared to the general population survey taker. When asked if they had
heard of the Kentucky Women's Cancer Screening Program, breast cancer survivors said no as
opposed to yes for the general population survey taker. Similar percentages were received for
all answers regarding the impact the Affordable Care Act has had on them. No change was a
given answer for both breast cancer survivors and the general population respondent. One
breast cancer survivor also said they can now seek medical services if needed.
Before breast cancer diagnosis, 100 percent performed self-breast exams, 50 percent had had
mammograms, and 100 percent had clinical breast examinations. This is compared to the
general population survey taker performing/receiving self-breast exams, mammograms, and
clinical breast exams.. All respondents had health insurance. Respondents from both surveys
were White. Both populations were high income. Both breast cancer survivors had a four year
college degree, while the general population survey taker had a 2-year college degree.
Table 4.5 shows key informant interview responses from the Appalachian Priority 2 region.
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Table 4.5. Key informant interview highlights - Appalachian Priority 2 Region
Responses included:
Screening
mammograms?
Knowledge; family history or friend with breast cancer; having method of payment; those
with risk factors; those trying to live a healthy lifestyle; fear; stigma not attached to
programs which provide care; becomes part of one’s regular health routine; women
realize they need to take care of themselves - not just their family (increased self-esteem);
importance stressed by gynecologists and PCPs; previous experience with mammograms
with abnormal findings; Relay for Life seems to bring awareness to all cancers
Minorities
mammograms?
Male partners dominate them - applies to all women; most are here illegally and fear
being “caught”; lack of knowledge regarding resources; navigating health care system;
transportation to screening or care; McCreary County has no local mammography
provider; low income and literacy rates; lack of insurance and misinformation;
Hispanic/Latina women do not seek screenings because of language barriers and limited
knowledge of where to go for care; cost, scared of outcomes; tend to family first, and
spend no time on their own health
Some women are dominated by men and are not allowed to talk or go places without the
male present, which applies to Hispanic/Latina/White/Black(African-American)/all women;
Appalachian people want to be independent and are reluctant to ask for help; there is a
certain fatalistic outlook in Appalachia and some religious fatalism, i.e. “When my time
comes, it comes.”; a barrier for some is “If a screening program DOES find cancer, how
will I get TREATMENT?”; some still find breast cancer an embarrassing topic so avoid the
issue; they don't seek care; it's a personal choice
community?
in your community?
Local newspaper; mass mailings; fliers posted in public areas; use existing networks of
partners - i.e. KY Cancer Program, health departments, County Extension Programs;
television; email; community health fairs; doctor's offices; community centers; radio;
worksites; special events; handouts in waiting rooms; reminder cards that providers send
out
Women age 45+; young adults need to be taught importance of self-exams and correct
way to perform them; homeless and immigrant populations need care and may/may not
be eligible for ACA/Medicaid; low income people who may be working but fall between the
cracks for eligibility; those with family history and those without medical coverage; all
women of all incomes in this community are underserved in the area of breast health and
often do not receive regular exams; young adult age group, 18-39; low-income, middle
class, Caucasian
More funding to provide services free/low cost; increase public knowledge of services
available free/low cost through local health department; create and maintain breast cancer
coalition that promotes awareness; gas cards through local health departments and
Kentucky Cancer Program to travel to both care and if needed, to mammograms;
outreach through churches; organizing a community health fair with a mobile
mammogram unit onsite; providing education materials through the community to health
care professionals and community partners; media promotion; special events; work with
doctors; enhanced communication among providers, specialists, and facilities; partner
with hospital or nonprofit to get the community served; working with Kynectors and
patients to get them into the system and educated; getting the word out
Barriers and Access
®
Lack of knowledge regarding need and resources; feeling uncomfortable talking about the
subject to their family doctor; transportation to/from appointments; women unaware they
can come to health departments for routine care at minimal/no cost; women that are
unable to pay even minimal cost for care; navigating health care system; low income and
literacy rates; misinformation; no imaging centers; women not on medical assistance are
less likely to visit the health department for breast exams; embarrassment/being
uncomfortable with procedures; limited available specialized practitioners; difficulty taking
off from work or securing child care; difficulty understanding what services are covered by
insurance and concern for financial impact on themselves; cost; knowledge on where to
get resources; most are scared and don't want to know; family comes first and they don't
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take care of themselves; more scheduling since the ACA
Private doctors need to advise women of the need for yearly CBE and mammogram;
need to have "Lady's Day Out” as in the past offering food, door prizes, etc. but only to
women that have never/rarely been screened; increase funding to health departments to
help pay for truly indigents care; funding for assist with transportation cost or ability to ride
to local offices for care from local transportation services free of charge; mobile
mammography van; other nonprofit programs are trusted sources of info, as would be
food banks; mammograms should be available regardless of age of patient; public needs
to be well informed through doctors and media, not relying on word of mouth; providing
education in the form of news articles and handouts that inform women where in this
community and surrounding areas services are offered as well as what exams and when
they should be getting exams done; special community breast check days/events where
female providers perform exams and screenings; community forums with information
shared by women who have been impacted as well as medical professionals; services
available at worksites or more employer flexibility; health fairs; doctors call the patients
and inform them what they are "due for" and then they come in; a van service that helps
patients that have difficulty getting to appointments; covering the cost that insurance
doesn't
Funding
Health departments so continued services can be provided at minimal/no cost;
organization which assists with treatment cost, or medicines, or other unexpected
expenses when cancer is detected; resources that cover expenses for “cancer families”
such as electric bills, food, etc.; free mammograms; informing public through media;
reduce proximity barriers to services; environmental assessments; increased availability of
screenings; education; travel and patient cost; programs with doctors; educating the
public on feeling more comfortable with getting screened; fill in the gaps that insurance
doesn't cover; funding local hospitals
In Appalachian Priority 2, motivation for obtaining mammograms varied among respondents but
knowledge, having a friend or family member who had had breast cancer, cost, and importance
stressed by doctors during check-ups were the most frequent findings. The most common
reasons why minority or underserved women don't seek screening were: lack of knowledge, not
knowing where to go for care, and cost. Cultural factors or reasons given as to why these
women don't receive screening included women being dominated by men, reluctance to ask for
help, fatalistic outlook, and that it is a personal choice to decide whether to get screened.
Appearing more than once, the most effective ways to disseminate breast health information in
the Appalachian Priority 2 communities were: mass mailings, local newspaper, health fairs, and
community partners and centers. Particular groups of women that have a particular need for
breast health services included: women age 45+, young adults, women who fall between the
cracks of eligibility, and all women in this area of the state. Common recommendations among
the 12 respondents in this region to improve breast health services were: funding for free
low/cost services, maintaining a breast cancer coalition, gas cards, health fairs, mobile
mammography vans, and partnering with local medical providers and nonprofits. Top barriers
that keep women from getting breast health screening included: lack of knowledge,
transportation, cost, no/few imaging centers in the counties, difficulty getting off work and
securing childcare, and being uncomfortable/embarrassed with the subject. Frequent findings of
what needs to be done to reduce these barriers and improve access were: doctors reminding
and encouraging patients during regular check-ups, increasing funding for health departments
and nonprofits, assist with transportation, mobile mammography van, providing education
through media, worksite services, and covering the cost that insurance doesn't. Lastly, common
community funding priorities included: health departments and hospitals, organizations assisting
with all expenses related to breast cancer, increased availability and lowered cost of screenings,
education, and filling in the gaps insurance doesn't cover.
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There were additional questions asked during the key informant interviews. When asked where
low-income or underserved women go for routine breast health care, 9 out of 12 said health
departments, 2 out of 12 hospitals, and one mentioned a nonprofit called Christian Care. As to
who the Affiliate should partner with to disseminate information, 7 out of 12 said health
departments, 8 out of 12 said either hospitals or local providers, 4 out of 12 mentioned nonprofit
organizations, and 3 out of 12 said extension offices. When asked if they believed that most
minority or underserved women sought regular breast health screening, 7 out of 12 said no and
5 out of 12 said they didn't know. Where individuals usually go if they need breast health
information responses were as follows: 3 out of 12 said health departments, 8 out of 12 doctors
or hospitals, 2 out of 12 nonprofit organizations, and one said the library. When asked what
types of programs would make it easier for women to access breast health services, 2 out of 12
said gas cards/vouchers. Other responses included: funds to completely cover screening and if
needed treatment, brochures in medical facilities, community breast check days/events,
worksite services, patient navigation, partnering with local hospitals or nonprofits, and web
access.
Focus groups
Tables 4.6, 4.7, and 4.8 show results from the three focus groups held in the Minority target
region.
Table 4.6. Health care/patient navigators focus group - Minority target region
Themes
What does Komen do?
Educate, provide funding for those who can't afford screening
Doesn't provide direct services (only grants and funding), doesn't provide funding for other
cancers or direct services, TV ads
How can Komen best serve your
needs?
What would help your community
regarding breast cancer?
Find more grantees (Komen has money to grant), more local information regarding new
drugs/treatment, learn more about genetic testing, pairing someone local with a recently
diagnosed person
Communication among different agencies, utilizing social media more, monthly meetings,
survivorship program, clear collaboration with young women from churches/organizations,
partner with health systems and community, create guidelines for what to expect going
through breast cancer, have someone come with you to appointments, clinical nurse
navigators with information packets, wider umbrella of service
Barriers
Lobbying for insurance gap, develop cheaper technology, transportation, access to
screening, childcare, psychological
Transportation, childcare, not understanding side effects, good doctors, a referral system
Cultural understandings and sensitivities
What are some of the cultural
sensitivities/understandings that health
care professionals or Komen should
know in working with communities of
color?
®
With culture comes religion, culture bases decision on care, 190 languages have been
identified in Lexington alone so Komen needs to be more aware of cultural diversities and
develop programs/materials etc. with this in mind, breast cancer survivor suggests
education for kids because she noted that children would stare at her when she was bald
from her treatment
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Table 4.7. Black/African-American individuals focus group - Minority target region
Themes
What does Komen do?
Provide support through the breast cancer journey, advocacy
Doesn't reach out to all individuals, public awareness not diverse enough, lack of
accessibility
needs?
Mobile sites for mammograms, providing educational materials, Komen should be in
hospitals working with staff and patient advocates promoting Komen and grantees, needs
to be a collaborative effort, more detailed brochures with information such as grantees
and where to seek help
Need more help with getting help to people who have no resources at all (this is where the
gap is), insurance not covering diagnostic mammograms
Barriers
Insurance paying for mammograms, need mobile mammogram vans, free
mammograms/screenings, individuals who work all the time, denial
Cost, fear, misunderstanding of system, mistrust, health literacy, understanding of what
doctors are really telling them, need face to face education, finality (all or nothing
mentality - doesn't have to mean double mastectomy), what treatment means, treated
differently based on insurance status (won't do tests if they have government insurance),
education level
color?
®
Distrust because of way ancestors have been treated, not going to give them the same
treatment, generational differences, how Blacks/African-Americans perceive
themselves/define themselves as women, the differences when a Black/African-American
person loses their hair (hair is part of their culture; it changes you and you don't want
anyone to see you bald), felt uncomfortable drawing attention to their cancer, affects the
whole family, need products for people with different pigmentations/people who look like
them, lack of identification, those with learning disabilities or who are deaf, being aware of
cultural differences and different priorities
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Table 4.8. Hispanic/Latino individuals focus group - Minority target region
Themes
What does Komen do?
Outreach
Doesn't help with other cancers
needs?
Making educational materials for more diverse populations
Educate young women and men earlier, community knowledge of breast health
Barriers
Interpretation/language barrier, religion
Interpretation/language barrier, understanding treatment
color?
Belief that all Hispanics/Latinos in Lexington are Mexicans, all undocumented, have
different ideas, don't lump all Hispanics/Latinos together, take the initiative to learn about
different countries, teach providers about different cultures, be culturally competent (lowincome, people with disabilities, along with Hispanics/Latinos and Blacks/AfricanAmericans), need more education for providers
For the focus groups that occurred in this target region, cultural understandings and sensitivities
include being culturally competent in all ways (Black/African-American, Hispanic/Latino, deaf,
low-income, etc.), religion, and development of products for more pigmentations and hair types.
Ideas for partnerships in the community include more outreach, Komen funding, and helping the
individuals who need help the most. With regards to how Komen can help serve the needs of
their community, partnering with more local organizations, communicating more frequently with
them, educating young people earlier, helping women with no resources or unsatisfactory
insurance, more communication among different agencies to aid in increased help and
resources for individuals, focusing more on local partners and information, and making
educational material culturally diverse and locally specific were comparable subjects among
these three groups. The main barriers to treatment appear to be religion, language barriers,
fear, cost, transportation, misunderstanding of and access to the health care system, and health
literacy. Insurance, language barriers, fear, time constraints, lack of education, and access to
screening seem to be barriers to breast cancer screening.
Information and education concerns included: over 77 percent felt they understood all of the
information they were given, nearly 28 percent said it took a lot of time and effort to get all the
information needed, 30.6 percent felt frustrated during the search, and 25 percent were
concerned about the quality of the information; over 97 percent said that their doctors listened
carefully and showed respect, involved them in decisions about their health care as much as
they wanted, and they felt comfortable asking questions. Concerns involving available resources
within the community included: nearly 92 percent knew that Komen Lexington served their
county, and 52.8 percent had heard of the Kentucky Women's Cancer Screening Program;
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regarding the impact the Affordable Care Act has had on them, 47.2 percent reported no
change, 27.8 percent were unsure, and 16.7 percent said they could now seek medical services
if needed; prior to diagnosis, more than 61 percent performed/received self-breast exams,
mammograms, and/or clinical breast exams; for 2.8 percent of individuals who did not perform
or receive exams prior to breast cancer diagnosis, the most commonly given reasons were: I
were/am under 40 years old, no one in my family had ever had breast cancer before I was
diagnosed, and other; 47.2 percent found their breast cancer themselves, and the same amount
said a routine mammogram found it; 14.3 percent were diagnosed at a late-stage (3 or 4);
almost 80 percent said they were not informed of complimentary, alternative, or unconventional
therapies. Concerns regarding identified disparities among respondents include: over 97
percent had health insurance, 77 percent were White, and almost 17 percent were
Black/African-American; 34.3 percent had a 4-year college degree. 17.1 percent had a High
School/GED, 22.9 percent had a 2-year college degree, and 20 percent had a
graduate/professional degree; over 32 percent had an annual household income of $75,000 or
above, while $35,000 - $49,999 and $50,000 - $74,999 both came in at over 20 percent. The
most survey responses were gotten in Fayette County (72.2 percent), followed by Woodford
(11.1 percent), but all counties in this target community were represented in the survey.
Race/ethnicity and health literacy was identified as disparities among survey participants within
this priority target community, although the disparities are minor compared to other regions.
Table 4.9 shows the open-ended questions asked regarding suggestions for improvement
provided by breast cancer survivor survey respondents.
Table 4.9. Suggestions for improvement - breast cancer survivors in Minority target region
during diagnosis?
resources?
you?
®
Get all tests done in the same day if possible; doctors explained everything
and were courteous; more education from people having experienced it
before; nutrition, exercise, and complimentary therapies; having
chemotherapy supplies (port, numbing creams, candy for metallic taste)
Have all medical personnel be female to reduce embarrassment; wish I had
known about the possibility of seromas; waiting rooms were too small and
crowded; wish I had kept a journal throughout; iPads helped pass the time
during chemo; talking with cancer survivors; more education on
complimentary treatment; learn more about nutrition; teach Jin Shin Jyutsu;
offer childcare; if you lose your hair shave it all off or it will feel like splinters;
wish I had know what I would look like after surgery; have someone help you
get in and out of bed after surgery; wearing scrub tops with pockets inside
out make the best attire for drain tubes; more frequent calls from nurses
Transportation; drivers to my appointments; wanted educational materials but
was able to get them on the internet; wigs, compression garments, post
mastectomy supplies - was able to get with the help from a social worker;
wish I had been informed about places to stay in town during my treatment;
my doctors linked me with all the resources and information I needed; more
information on support groups; childcare; help from neighbors and friends;
computer contained a lot of negative information and I needed positive; help
cleaning and cooking; gas cards; insurance help
Keeping up mammograms; any additional advice is appreciated; more
information on medications and their side effects; compassionate medical
personnel; encouragement and support from providers, family, and friends;
stay involved in support groups; inform doctor of any side effects; quicker
turn around on test results; move often; having at least a week between
surgery and oncology appointment would have been helpful; get more active
with yoga and walking; more phone follow-up; have your doctor explain
everything
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You will get through it; stay positive and follow treatment advice; get all the
information you can; ask questions; know you are not alone; wish I had a
survivor to talk to; don't choose a doctor too quickly and do your research;
surround yourself with family and friends; follow advice of medical staff; never
give up and keep fighting; stay calm; link survivors with newly diagnosed;
decide to live until you die; schedule treatments early in the morning; be
patient; make sure you understand your diagnosis; take one day at a time
and keep a journal; focus on getting better; trust your physician; do water
aerobics; get your mammograms every year; cry when you have to
Regarding diagnosis, kind and caring doctors, more education about the process, and more
support from others that had been through it before were the most commonly given ideas to
better the experience or what was most helpful during diagnosis. When asked about treatment,
keeping a journal, speaking with cancer survivors, offering childcare, and knowing more about
what they were going to experience after surgery were the most frequently appearing ideas to
improve the experience, what was most helpful, or what they wish they had known. Regarding
resources they needed, the most common responses were wanting more educational materials,
where to get post-surgical supplies, help with transportation and gas cards, and more
information on support groups. For follow-up care, the most frequently appearing responses to
improve the experience or what was most helpful were: more education, staying involved with
support groups, informing your doctor of any changes or questions you have, and
encouragement received from doctors, family, and friends. Regarding survivorship, staying
positive, getting all the information you can, linking survivors with newly diagnosed, and making
sure you understand your diagnosis were the most commonly given pieces of advice for
someone recently diagnosed.
Information and education concerns included: over 97 percent of respondents said that men can
have breast cancer, that breast cancer can occur before age 40, and that you have a higher risk
of breast cancer if you have/had a family member with breast cancer; just over 81 percent
considered themselves educated on breast cancer; over 48 percent would prefer to go to an
OB/GYN first for medical services, followed by a family physician then specialty physician; the
most effective ways they thought to provide breast health information to their community were
television, health events, and internet. Concerns involving available resources within the
community included: over 70 percent knew that Susan G. Komen served their county; 52.1
percent had heard of the Kentucky Women's Cancer Screening Program; over 63 percent
reported no change due to the implementation of the Affordable Care Act, 14.5 percent were
unsure of how it affected them, and 13.9 percent reported now being able to seek medical
services; over 59 percent stated they perform regular self-breast exams, 79.8 percent have had
a clinical breast exam, and 76.0 percent have had a mammogram; for individuals reporting they
do not get mammograms, the most common reason why were they are under age 40 and no
one in their family has ever had breast cancer. Concerns regarding identified disparities among
respondents include: 97.0 percent stated they had health insurance; over 85 percent were
White, followed by 9.2 percent Black/African-American and 5.5 percent Hispanic/Latino; the
majority of respondents make $75,000 a year or above, followed by $50,000 - $74,999 and
$35,000 - $49,999; and highest level of education was graduate/professional degree at nearly
33 percent, followed by 4-year college degree (25.9 percent) and some college (18.7 percent).
The most surveys were received in Fayette County (66.1 percent) followed by Woodford County
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(23.8 percent). Race/ethnicity and health literacy are identified as disparities among general
population survey participants within this priority target community.
Survey comparisons
Both surveys asked if Komen Lexington served their county. Over 91 percent of breast cancer
survivors said yes compared to 70.8 percent of the general population. When asked if they had
heard of the Kentucky Women's Cancer Screening Program, 52.8 percent of breast cancer
survivors said yes, a very similar number to 52.1 percent of the general population. Regarding
the impact the Affordable Care Act has had on them, no change was the commonly given
answer, with 47.2 percent of breast cancer survivors and 63.8 percent of the general population
saying this.
Before breast cancer diagnosis, 72.2 percent performed self-breast exams, 83.3 percent had
had mammograms, and 61.1 percent had clinical breast examinations. This is compared to 59.5
percent of the general population performing self-breast exams, 76 percent having
mammograms, and 79.8 percent having a prior clinical breast exam. Mammography rate is
similar, but breast cancer survivors reported more self-exams and the general population
reported more clinical breast exams. Health insurance rates were very similar (97.1 percent for
survivors, and 97 percent for the general population). Both surveys had the highest response
rates in Fayette and Woodford Counties. Service area percentage of White individuals is 93.7
percent. The race/ethnicity of breast cancer survivors was more varied (77.8 percent White)
than that of the general population (85.9 percent White), which more closely mirrors the service
area. Both populations were mostly high income. Nearly 59 percent of survivors reported a
household income of $50,000 or greater, compared to 63.5 percent of the general population.
Over half (54.3 percent) of survivors had at least a 4-year college degree, and 58.4 percent of
the general population did.
Table 4.10 shows results from the key informant interviews in the Minority target region.
Table 4.10. Key informant interview highlights - Minority Target Region
Responses included:
Screening
mammograms?
®
A friend/family member/coworker/or self experiencing breast health issues and/or a
person becoming aware of a resource for screening through an outreach event/word of
mouth; women who regularly seek mammograms do so as it is a personal value for them
to protect their health, are aware of preventive care benefits; health care providers
promoting regular screenings; story in media on famous person with breast cancer;
wanting to live; survivor stories; knowledge that regular mammograms can detect breast
cancer early
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Minorities
mammograms?
Population not aware of how/where to access services and often believe they aren't
eligible for screenings due to non-citizenship status; lack of insurance; lack of
transportation; unaware of no-cost resources for screening; work schedules; family
obligations limiting time to care for themselves; “will not happen to me”; may not know
there is a need to get screened; not sure of what is taking place; fear; ignorance; they
think the mammogram is painful; nurture everyone else but not themselves; distrust of
health care systems; indifferent attitude of some providers and organizations; lack of
information
Not sure about cultural, but financial barriers high on list; the term Latino refers to a
linguistic community, not a community that necessarily shares one culture.
Hispanics/Latinos are an extremely diverse group with ancestry originating in the
countries of Central America, South America and the Caribbean. In Lexington the major
Hispanic/Latino subgroups have origins in Mexico, Puerto Rico, Cuba, and Central
America. It is important not to simply generalize. Be aware of some of the overall cultural
values of each community as they relate to providing health care. There is great diversity
within this community and it should be treated as many not just one; Black/AfricanAmerican women will not trust that they will get the same treatment as a White lady; cost
and most don't even receive regular care; these women don't feel worthy to seek
preventive services
community?
Through partnerships with churches and community/civic organizations; health education
program; educational information in waiting rooms; screen women during other services to
educate individuals; factories; local businesses; colleges; lighted health department sign;
billboards; bulletin boards; Spanish radio station; newspapers; photo novellas enables
community members with little money, power, or status to communicate to policymakers
where change must occur; parks; brought to leaders in community then guidance starts;
intimate small group education such as employee staff meetings; clinics; hospitals; health
departments; television; radio; organizations that focus on women’s issues; PSAs; social
media
Women 40 and over, uninsured, unemployed, and socially isolated; most Hispanic/Latino
population doesn't understand how the health care system works or where to turn for
care; Black/African-American; all Hispanic/Latina women; teach daughters at an early age
of the importance of breast exams; baby boomers; farm workers; women after child
bearing years; low income women; uninsured Hispanic/Latin American women and other
women in the country without legal documentation
in your community?
Systematic outreach with community partners and provide breast health screenings in a
mobile fashion; increase education; integrating cultural competency throughout
organizations; work shop on did you check your Breast today, show them how; continue
to fund local health department; breast cancer screening and treatment; more
employment opportunities to increase disposable income and have same access to
quality health services as insured state employees and others; increased community
education
Barriers and Access
®
Lack of education regarding resources and support for breast cancer screening; many
individuals without insurance remain unaware of ACA and options available to them for
health coverage through legislation; minimal public transportation options for rural
community members; unable to afford to miss work to come to appointments during
offered clinic hours; general fear of breast cancer diagnosis along with lack of education
regarding breast cancer survival; language barriers; didn't know it was important or
needed; do not know where to go for care; lack of recommendation from provider; lack of
information regarding breast health, risks, and screenings; anxiety about procedure
(mammograms) because of false information; embarrassment about exposing breasts;
not enough hands on information; ignorance; fear of authorities; hectic lives; lack of
knowledge of preventive care
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Partnerships; community education; media outreach regarding resources for breast health
screening; media outreach to uninsured individuals to connect them to insurance options;
mobile breast health screenings; meet people where they are in their own pockets of the
community; programs in churches to educate women on services; offer programs where
these women would go for support; increase in funding for community education activities;
providers need to start recommending mammograms and give right information
concerning screening; clinics/providers need to use medical interpreters; have sites where
screenings are free of charge or at a low price; advertise in the community; no charge for
exams; people put off health matters to pay a bill then deal with illness; survivor talks;
continue to fund breast cancer screening and treatment through local health department;
find a way to pay for services without subjecting them to immigration service intervention
Funding
Partner with providers who will head a mobile unit; education; helping with transportation
to appointments; helping with cancer care expenses; billboards; having more outreach
workers; all people of color; churches; community centers; PTA meetings; other
nonprofits; treatment dollars through local health department or hospital (local health
department is best to be fiscally responsible); at risk women (ALL WOMEN - not just
minorities)
Most common motivation for obtaining regular mammograms were: family member or friend
who had experienced breast health issues, women who care about their health, stories about
famous people with breast cancer, and health care providers promoting regular screening.
Common reasons why minority or underserved women don't seek breast health screening
included not knowing where to access services, lack of insurance, lack of transportation, family
obligations, fear, and distrust of system. Cultural factors or reasons that were given that may
explain this were: generalization of Hispanic/Latino culture, unworthiness to seek services, and
distrust. Responses for most effective way to disseminate breast health information included
partnerships with churches and community organizations, educational programs, billboards,
newspapers, bringing the issue to community leaders, television, radio, and social media. Most
common groups of women in need for services were: women age 40 and over, uninsured
women, low-income, Black/African-American population, and all Hispanic/Latina women.
Recommendations to improve breast health care services included mobile mammography,
education, continuing to fund health departments, and more employment opportunities.
Commonly given barriers that keep women from getting routine breast health care were: lack of
education and knowledge, uninsured status, transportation, unable to get off work, fear, and
language barriers. Answers given for what needs to be done to reduce these barriers included
partnership, increase funding for community education, media outreach, mobile mammography,
and free/low cost screenings. Finally, respondents noted these were the most important areas
to prioritize funding: education, transportation, helping with all cancer expenses, and helping all
at-risk women (not just minorities).
Twelve interviews were done in the Minority Target region, but 11 followed the same interview
script - the other interview was a free-flowing conversation and therefore will be discussed
separately. Of the 11 following the script, additional questions were asked during the interviews.
When asked where low-income or underserved women go for routine breast health care, 10 out
of 11 said health departments, two out of 11 said a nonprofit, and one said a local cancer
center. When asked who the Affiliate could partner with to disseminate breast health
information, eight out of 11 said churches, five out of 11 said doctors or hospitals, five out of 11
said nonprofits, four out of 11 said school systems, eight out of 11 said women's groups, and
three out of 11 said libraries. Respondents were asked if most minority or underserved women
seek regular breast health screening, and six out of 11 said no, one said yes, and four out of 11
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said they didn't know. When asked where community members usually go for breast health
information, nine out of 11 said health departments, six out of 11 said primary care providers,
two out of 11 said the internet, three out of 11 said the hospital, and one said a local area health
education center. Respondents were asked what type of programs would make it easier for
women to access breast health services, and responses were as follows: two out of 11 said
mobile mammography vans, two out of 11 said they had the programs, and two out of 11 said
churches. Other responses included outreach workers, bilingual speakers helping to schedule
mammograms and who will be with the client during screening, transportation programs,
brochures in schools/community groups, women's health workshops, and relying on those in the
business to determine what services are most likely to help. One respondent stressed that the
health department and hospital need to use the health department first to access federal funds,
then use Komen funding for treatment services that federal funding doesn't cover.
There were two additional questions asked only to health department directors during the
interviews. There were five respondents from the Minority Target region that answered the
additional questions. Table 4.11 shows the supplementary questions asked and the responses
gathered.
Table 4.11. Health department director additional questions - Minority Target Region
What breast health education
and outreach services does
your health department
provide?
What kinds of aftercare or
follow-up to treatment are
offered by your health
department (e.g., support
groups)?
Teach breast exams; schedule mammograms for patients; community education; provide breast
health literature at community and workplace health fairs; offers a Woman’s Day event twice per
year, which is dedicated to women, ages 40 and over. During their visit this day, individuals are
seen by a nurse practitioner for a clinical breast exam and scheduled for appropriate
mammograms; health department leads the Sisters Fighting Back Breast and Cervical Cancer
Coalition in Lexington; Ladies Health Day which is an outreach educational program; social media;
newspaper articles; pamphlets; brochures
Due to reduced funding and staff not able to provide this to community; referral to American
Cancer Society programs and Pink Ribbon Partners and KY Cancer Link; health department has
shifted out of clinical services and emphasize the fundamental public health mandates – the
department refers clinical services to those with more expertise in clinical activity; the department
has a contract with a surgeon for the care of abnormal mammogram finds
As seen in this table, health departments are able to provide some education and outreach
services including scheduling mammograms for patients, providing health literature, hosting
ladies' health days, and some media outreach. However, the health department directors
appear quite limited in the aftercare or follow-up they are able to provide. One department is not
able to provide these services at all to the community. The other departments appear to refer
individuals to local nonprofits, or contract follow-up with a surgeon rather than providing the
services themselves.
One interview was completed in the Minority target region very early on in the Community
Profile process before the interview script was finalized. The Consultant and Director of Mission
and Outreach interviewed a social worker who works in the Psych-Oncology unit at a local
cancer center. Several topics were covered during the interview. When the social worker meets
cancer patients who are struggling, she described advising people of the "new normal": people
may expect things to go back to the way it was before cancer, but it never does. She mentioned
that treatment can be extremely rough these days and that if the cancer doesn't get them, then
it is the treatment itself. She finds herself overwhelmed by the young age of cancer patients she
visits with. She spends a large amount of time helping people with the basic necessities such as
their living situations and co-pay assistance. Her team uses a local nonprofit for transportation
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expenses. She wishes they had more cancer care products such as lymphedema supplies,
medical equipment, and prostheses or wigs to give to those she helps. She receives a lot of
requests for food vouchers, and is hoping to be able to provide more of these in the future. The
cancer center she works at hosts events where women with no health insurance can get in to
get a mammogram and then get referred appropriately. Her team tries to reach every cancer
patient. They see many Hispanic/Latina patients, but the majority is White. She also thinks that
starting a survivorship program would be a great addition to the Affiliate's outreach.
Survivor interviews
Table 4.12 shows results from the four breast cancer survivor interviews conducted in the
Minority target region.
Table 4.12. Breast cancer survivor interviews - Minority Target Region
Themes
Survivor 1
Survivor 2
Survivor 3
Survivor 4
Family History
Mother is a breast cancer
survivor.
Aunt and grandmother
had breast cancer.
Niece had breast cancer
Two aunts, mother,
and two sisters had
breast cancer.
Diagnosis experience
Discovered the lump
herself. Mammogram
showed one lump at the
surface and three
additional tumors.
A routine mammogram
found it.
Discovered the lump
herself. A mammogram
showed nothing, but a
biopsy was done to err
on the side of the
caution which turned out
to be cancerous.
Diagnosed with ductal
breast cancer. The
hospital she went to
answered all of her
questions and
explained everything.
Treatment experience
- surgical
Chose a bilateral
mastectomy because she
did not want to have
surgery again. Surgery
was horribly painful.
She opted to have a
lumpectomy as there
was only one lump
found. A breast care
coordinator held her
hand during the
procedure where they
insert a needle through
the lump pre-surgery.
The surgery went well,
and was not as painful
as expected.
Because of other health
conditions such as
diabetes, and also
because only one lump
was found, she chose to
have a lumpectomy. Her
surgery was done by a
general surgeon, a
decision she regrets due
to how her breast looks
now. She feels a breast
cancer surgeon could
have done a better job.
Chose to have a
double mastectomy
because her sister is a
double breast cancer
survivor and she didn't
want to go through this
again. Also, her
doctors told her she
had a high chance of
reoccurrence in the
other breast if both
weren't removed.
Additional treatment
Chemotherapy - 8 months,
one treatment every two
weeks. Felt fine day of
chemo, but felt nauseous
and exhausted for days
afterward. Lost her hair,
nails, eyebrows, breasts everything that made her
feel like a woman.
Radiation - she did not
burn much during
radiation, and applied a
cream the doctor gave
her which helped a lot.
Radiation - 5 days a
week for 6 weeks. The
radiation made her
exhausted and burned
her very badly.
No radiation or
chemotherapy.
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Aftercare/posttreatment follow-up
Doesn't feel nurses were
as helpful as they should
have been. She wasn't
told how to empty her
drain tubes and got an
infection because she
didn't know she was
supposed to wear gloves
while draining. Had to go
through trial and error for
products that could have
eased her chemotherapy
discomfort. Chose to have
reconstructive surgery and
had to find the facilities
where she could purchase
post-surgical supplies
herself - no one told her
where to go.
She took a pill for 5
years because her
cancer was HR+. This
pill made her gain
weight and irritable, so
she was put on an
antidepressant.
Intimacy was difficult
because of her
treatment. The
antidepressant she was
put on also helps with
hot flashes, which is
why she believes she
wasn't bothered by
them. Radiation made
her feel exhausted
years after completing
it.
She feels uncomfortable
with her body now and
doesn't want anybody to
see her. The hormone
therapy they put her on
gives her horrible hot
flashes, at least one
every hour. Nothing has
helped this. She still
feels exhausted from the
radiation she did.
She says she'll never
feel like a woman
again. She can't look
at herself in the mirror.
Because of the pain
she was in, she was
put on medication such
as Flexeral and
Percocet. She still has
a lot of pain in her
back, shoulders, and
chest. She still has
lymphedema.
Support
Twin sister was with her
during her hospital stay.
Husband was very
supportive. Her son was
very young during her
treatment and didn't
recognize her due to side
effects from treatment this made her very upset.
She joined a survivor
group, but everyone there
was older than her and
she felt uncomfortable
asking questions about
certain topics such as
intimacy. She found it hard
to relate considering the
point she was at in her life.
Talking with a coworker
who was a breast
cancer survivor helped.
Four ladies in her
Sunday school class
had had breast cancer
and talking with them
helped too. She feels
comfortable asking
questions in the support
group she joined. Her
faith helped her get
through. Her husband
was a great support.
People she met in the
radiation waiting room
were nice to talk to. Her
sister-in-law was
diagnosed with breast
cancer a month after she
was and talking with her
was a great support. Her
family helped a lot during
this time, and her
daughter came with her
to every appointment.
Information packets
were very helpful. One
of her sisters helped
take care of her after
her surgery. Her
hospital has a large
survivor network and
speaking with them
helped. Her workplace
and co-workers were
very supportive, and a
preacher came to see
her at time of surgery.
She is a single Mom
and took her daughter
with her to support
groups.
Recommendations
Wishes someone would
create a program that
would partner recent
breast cancer survivors
with the newly diagnosed.
She would like to be
involved in such a
program if Komen
Lexington created one.
Join a support group.
Get annual
mammograms. Be with
family and friends.
Keep busy and have a
positive attitude.
Have someone come
with you to your
appointments. Get more
than one opinion on your
care. Trust God, and try
to stay positive.
Komen should create a
survivorship program
and an information
booklet with resources
broken down by
county, survivor
stories, types of breast
cancer, etc. Speak
with other survivors
who have had similar
treatment protocols.
There are both similarities and differences between the survivors the Affiliate interviewed. All
survivors have family histories of breast cancer. Two survivors discovered a lump themselves,
one was found during a routine mammogram, and the fourth did not specify. The two survivors
who had bilateral mastectomies found the surgery very painful with lingering after-pains. Despite
the fact one survivor was not happy with the results, the two survivors who had lumpectomies
did not experience as much pain post-surgery. The two survivors that experienced radiation had
different levels of skin burning, yet both noted how tired radiation made them feel then and now.
The survivor who experienced chemotherapy had side effects such as loss of hair and nails,
while the fourth survivor did not have to have either chemo or radiation. For post-surgery care,
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one survivor felt she was not informed of how to take care of herself after surgery, and where to
purchase supplies such as bras. The other three either experienced lingering pain from
mastectomy, or side effects from hormone drug therapy. All survivors expressed their
gratefulness for having support through their breast cancer experience. Family, co-workers,
fellow survivors, and support groups (to varying degrees) all played a role in the support these
survivors received. Lastly, recommendations also had similar themes. Two survivors expressed
the need for a survivorship program. Two others suggested a positive attitude helps, along with
family support.
Common Findings within Qualitative Data Methods
Both breast cancer survivor and general population surveys identified themes similar to focus
groups. Themes from the two surveys were: information and education concerns, knowledge
about available resources within the community, and identification of disparities. Focus group
themes included barriers (akin to identifying disparities), serving the needs of the community
(akin to resources, information and education), cultural understandings (akin to disparity
identification), and partnerships in the community (akin to resources). Both breast cancer
survivor survey respondents and focus group participants identified that transportation and
education were needed resources.
Comparing surveys and key informant interviews, easily accessible education was needed; key
informants said a majority of women seek breast health information from their health care
providers, so putting more educational material in physician offices and hospitals should help.
Breast cancer survey respondents noted they needed help with patient care services such as
childcare and more educational materials, which is what focus groups suggested for funding
priorities and recommendations to improve breast health care.
Comparing breast cancer survivor surveys and survivor interviews, both groups stated how they
wished they had known more what to expect post-surgery and what side effects they might
experience. Individuals from both methods also wished more information had been given to
them about where to get post-surgical supplies. Support from loved ones was crucial to
survivors. Also noted in both of these methods was the importance of getting involved with a
support group, and of need for a survivorship program so that the recently diagnosed can speak
with other survivors.
There are similarities among the responses from the community members/partners and minority
focus groups. Participants believed Komen Lexington provides outreach, advocacy, and
education, but doesn't provide funding/help to all individuals and all cancers. The Affiliate can
best serve participants needs by getting additional grantees and working with/promoting them
more, focusing more on local partners and information, and making educational material
culturally diverse and locally specific. What would best help their communities regarding breast
cancer is educating young people earlier, helping women with no resources or unsatisfactory
insurance, treatment closer to home, and more communication among different agencies to aid
in increased help and resources for individuals. Insurance, language barriers, fear, time
constraints, lack of education, and access to screening seem to be barriers to breast cancer
screening. The main barriers to treatment appear to be religion, language barriers, fear, cost,
transportation, misunderstanding of and access to the health care system, and health literacy.
For the community members and partners focus group, ideas for partnerships in the community
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include more outreach, Komen funding, and helping individuals who fall through the cracks which are similar responses to the minorities focus groups. Likewise, with regards to how
Komen can better their relationships with community partners, partnering with more local
organizations and communicating more frequently with them were comparable subjects among
all four groups.
There were similarities and differences amongst all three target communities with regards to key
informant interviews. Common motivations to obtaining regular mammograms were knowing
someone who had had breast cancer, wanting to take care of themselves, and doctors
informing and motivating them. Common reasons why minority or underserved women do not
seek screening were lack of knowledge, cost, and not knowing where to go. The three target
regions were not in agreement with the reason for this lack of screening. The common ways to
increase effectiveness of disseminating breast health information were mailings, all media forms
of advertisements, and health fairs. Consensus for particular ages of women that are most in
need of breast cancer services was all women, women over 40, and uninsured women or those
that fall between the cracks. Common recommendations to improve breast health care were
more education, more access to free and low cost services, and mobile mammography vans.
Lack of knowledge, cost, transportation, and fear are top barriers to getting routine breast health
care in all three target communities. To reduce these barriers, the interviewees suggested more
education, getting doctors to encourage screening for patients during check-ups, transportation
help, and mobile mammography vans. There were also similarities between suggestions for
funding priorities. These were: help with all patient care services, education, and transportation.
Key informants among all three target communities said that most low income or underserved
women in their community go to health departments, nonprofits, and hospitals for routine care.
Health departments, doctors/hospitals, and extension offices were common responses for
suggestions of who the Affiliate could partner with to disseminate breast health information.
Most key informants thought that minority or underserved women did not seek regular breast
screening, or they did not know. When seeking breast health information, most noted individuals
go to health departments, primary care doctors, or hospitals. Finally, common findings for
programs that would make it easier for women to access breast health services were: free
screenings, mobile mammography vans, community events, transportation programs, and
educational material distribution.
There were a lot of similarities between data gathered in focus groups and key informant
interviews. Focus group participants noted that the Affiliate can best serve the needs of the
community through focusing on local partnerships and making culturally diverse and locally
specific educational material. Key informants agreed, and said that the health departments,
doctor’s offices, and hospitals in their communities are the best places to partner with, and to
help with dissemination of, educational material. Focus group participants said that what would
help their communities most regarding breast cancer is educating young people earlier, helping
women with no/poor resources and insurance, treatment closer to home, and more
communication among agencies. All of these needs were noted by key informants. Lack of
knowledge, cost, transportation, fear, and not knowing where to access services were barriers
to breast health care that were mentioned in both data methods. Focus group participants noted
the importance of being culturally competent in all ways, and key informants gave many
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different reasons for why minority or underserved women do not get the screenings they need,
demonstrating the need for culturally variable methods.
There were little similarities between focus group and survivor interview topics, but both
respondents in these methods noted the importance of more education throughout the breast
cancer experience. Likewise, there were few similarities between key informant interviews and
survivor interviews, but both emphasized the importance of access to education during the
whole breast health journey: from getting screenings, to diagnosis and treatment, and posttreatment care.
Strengths and Limitations of Data
Convenience sampling was used for both the breast cancer survivor and general population
surveys. Strengths of convenience sampling are that it is an inexpensive way to ensure
sufficient numbers of responses, and that it helps gather data when it isn't possible or very
difficult to use probability techniques. Indeed, the Affiliate incurred little cost in making the
surveys. The cost of printing paper copies is the only expense acquired from survey use, and
using probability techniques would have been very time and resource consuming. Weaknesses
of convenience sampling include high bias rate leading to over- or under-representation of
certain groups, which can be unlikely to be representative of the population. Both of these
weaknesses can be seen in the survey responses the Affiliate received. There were a lot of very
wealthy people with college education who took the surveys. For example, the majority of
respondents had at least a four year college degree and made over $50,000 a year (except
breast cancer survivors in the Priority 1 region). The survivor surveys were similar. In Kentucky
that is in reality about 5-10 percent of the population. Extremely impoverished people do not
have time or money to go to the types of places where the main recruitment occurred. The data
are still useful, but these respondents are financially more secure and have more access to
resources. They are likely to be more educated on breast cancer in general and have fewer
barriers like transportation, insurance coverage, or childcare to prevent screening.
Although convenience sampling was mainly used, snowball sampling was also used for survey
data collection, as individuals, companies, and partners that were sent a direct link were asked
to distribute as much as they chose. Strengths of snowball sampling include: reaches hidden or
hard to reach populations that may be less likely to come forward to participate, and includes
members of groups where no lists or identifiable clusters even exist. The Affiliate does not know
how many hard to reach populations or groups were contacted through snowball sampling. The
disadvantage to snowball sampling is that it isn't possible to know whether the sample is
representative of the population. Looking at all the survey data gathered, it appeared that the
samples were not representative of the general population.
Convenience sampling was also used for focus groups, and the same strengths and
weaknesses apply. Since all focus groups were piggybacked onto meetings already set in
place, the sample of individuals included no probability techniques. Even though the aim for the
community members and partners focus group was to learn from individuals who live and work
in the Appalachian Priority 1 region, the Affiliate did not advertise for this group and had no
control over which community members would be in attendance. The individuals attending that
day were there because of an interest in the pre-scheduled meeting, not solely because of the
focus group the Affiliate was conducting. The same can be said for the three focus groups held
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in the Minority target region. Attendees were not there just to participate in a focus group; they
were there to attend an outreach meeting. This does bias the data; however, the attendees of
these focus groups provided beneficial information about their communities.
Purposive sampling was used for both key informants and breast cancer survivor interviews.
Strengths of purposive sampling include: multiple techniques to choose from depending on
purpose of qualitative inquiry, generalizations can be made from the sample being studied, and
it ensures balance of group sizes when multiple groups are to be selected. To find key
informants, the Affiliate looked online and used its resource guide to select individuals who
seemed most likely to know about their communities with regards to breast health.
Generalizations were made from the sample. And the Affiliate tried to make sure an even
number of interviews were done in each region. The main limitation to this sampling technique is
that samples are not easily defensible as being representative of the population due to potential
subjectivity/bias of investigator. While the Affiliate attempted to have equal county
representation, one county (Fayette) in the Minority region was over-represented. Appalachian
Priority 2 was very underrepresented in the surveys, and breast cancer survivors in the Priority
1 region were as well. There are several reasons why this is. These counties can be hard to get
into geographically, but it can also hard to get into the community if you are not from the region.
This is also due in part to repeated attempts to contact individuals from other counties but
response rates were low for certain counties. When picking who to contact, the Affiliate also
tried to variably pick individuals based on their place of employment and their job.
Both surveys and key informant interviews used internet techniques including email and webbased surveys. Strengths of internet techniques include: cost-effectiveness; the participant can
choose when and where to participate which is linked to more honest responses; survey
software controls what questions the respondent can view and show additional questions if they
answer in a certain way (e.g. skip patterns); and fast results. Online and email surveys and
interviews helped keep printing costs low. The Affiliate used branching and logic to craft
surveys, and fast results were attained.
Limitations of internet techniques include: requiring accurate email addresses; survey design
must accommodate equipment that is not up-to-date or has slow telecommunication access;
may not provide a representative sample of the population because some individuals do not
have internet or email access; there may be technical glitches such as double entry and freezes
and crashes; the response rate tends to be lower than mail surveys; there is a response bias
(those with lower education levels, minimal computer use, and those with older computer
equipment and low-end browsers are less likely to participate); and surveys need to be of
reasonable length. Surveys and email interviews were not specifically designed to
accommodate slower or out-of-date operating systems and the Affiliate has no way of knowing
how this might have impacted survey or interview collection. It does appear that having many
online survey responses may have affected the representation; because the majority of
responses came from wealthy and educated individuals. The Affiliate also has no way of
knowing if any technical glitches occurred during the surveys. There were a couple of instances
where key informants were emailed interviews and they did not complete the final page, but the
Affiliate doesn't know if this is because of a technical issue, if the respondent ran out of time, or
if they simply did not want to answer those questions. Since the Affiliate did not use mail
surveys, it can't speculate on whether response rates for electronic surveys and interviews were
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lower than mailings. Online surveys took no more than 10 minutes to complete. The breast
cancer survivor survey had a section for suggestions that respondents could fill out, but which
was not required. Key informant interviews required a longer time commitment, but usually no
more than 15 minutes; again, since these questions required mostly fill-in-the-blank answers, it
was up to the respondents to decide how much or how little they wanted to write.
Phone interviews were also conducted for key informant interviews. Strengths for phone
interviews include: the interviewer can build a personal rapport with respondents over the
phone; more people are likely to complete the survey because they have someone explaining
the purpose and importance to them in detail; phone interviews typically have simpler questions
with limited choices for answers; response rates are usually between 40-80 percent when
repeated callbacks are performed; and there is the ability to control the order in which questions
are asked and answered. Nearly everyone who was asked to do a phone interview complied
right then, or asked Komen Lexington to call back at a more convenient time. The questions and
answers asked over the phone were the same ones asked through email, and there was no
change to the question order.
Limitations of phone interviews include: requiring up-to-date telephone numbers; no control over
who answers the phone or if someone answers; telephone surveys can be time and resource
consuming (e.g. money, staff); respondents may be suspicious about the legitimacy of the
survey without having face-to-face interaction; may exclude individuals who do not have
telephones; survey must be short and simple; not able to visualize survey and see
questions/possible answers in front of them; and inability to control the timing and environment
of the call. The Affiliate had no issue with inaccurate or out-of-date telephone numbers.
Whenever possible, the Affiliate tried to use a direct line to the key informant it wished to speak
with, but few issues were raised when the individuals that were chosen to complete an interview
were not the ones originally contacted. Telephone surveys were not monetarily consuming, but
it did take some time to complete. There were no major issues with legitimacy that occurred, but
the Affiliate did have to explain thoroughly why calls were being made and who was calling. All
individuals who Komen Lexington originally wanted to interview had telephones. Again,
interview questions were not shortened or changed because of the interview method, and there
did not appear to be an issue with length or with not having the interviewer in front of them.
There were a few timing issues where the Affiliate was told to call back. When callbacks
occurred, in two cases the Affiliate was unable to speak with the original intended, but was able
to interview an equally knowledgeable individual.
Some breast cancer and general population surveys, breast cancer survivor interviews, one key
informant interview, and all four focus groups were done face-to-face. Strengths of the face-toface method include: higher response rates as it is harder to refuse someone face-to-face;
survey questions can be more complex because it is administered by a trained interviewer;
allows visual aids; participants can consult records if asked questions about when services were
completed; survey responses may be longer because the respondent does not have to write out
answers or hold a phone; interviewer can probe for additional information to open-ended
questions; and it is possible to record body language and environment. The Affiliate was not
refused for any interview face-to-face as the day/time had previously been set up via email or
phone call. The survivor and key informant interviews completed in person did not follow a set of
survey questions and therefore were not made more complex. Each focus group followed a pre®
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set script and was not individually tweaked (outside of pre-determined themes) to be made
more complex. Visual aids were not used during face-to-face interviews, surveys, or focus
groups. Participants did not need to consult any records for interviews, surveys, or focus
groups. Interview responses were longer face-to-face, likely because participants did not have
to write anything down and felt more comfortable sharing their experiences. It was also easy to
ask follow-up questions or probe for additional information as deemed necessary. Body
language and environment was not noted during the interviews, surveys, or focus groups, but all
respondents seemed comfortable with their environment.
Limitations to the face-to-face method include: cost as compared to mailed and internet surveys;
amount of time needed to complete survey is longer than other methods; hesitancy to report on
personal types of behavior hindering accuracy or completeness; and respondents are more
likely to provide socially desirable responses. There was some cost incurred during face-to-face
interviews. The Affiliate covered the cost of refreshments and a meal while interviewing or
hosting focus groups. There was no monetary costs besides printing for in-person surveys. All
face-to-face interviewing and focus groups took longer than phone interviewing. Paper surveys
might have taken a bit longer than online ones, but there didn't seem to be much of a difference.
Survivors seemed to open up well during interviews and the Affiliate was given no indication that
they were providing responses that would be considered socially desirable. The Affiliate is
unaware if surveys or focus groups done in-person had any effect on responses.
Due to the limitations of the data, the perspectives provided represent only those that
participated in the focus groups, surveys, and interviews and do not represent the general
population of the community, survivors, or providers as a whole.
Qualitative Data Findings
Linking Qualitative Findings to Quantitative Findings and Resources/Partnerships
The Affiliate's qualitative data collection findings are linked to key questions formed after the
analysis of the Quantitative Data Report (QDR) and Health Systems and Public Policy Analysis
(HSA). The QDR showed that poverty is an issue for the two Appalachian Priority Regions. As
seen in key informant responses from these two regions, unless individuals have insurance they
have difficulty paying for screening and if needed, treatment. Individuals find it hard to get off
work and risk losing pay to get a screening. While the overall proportions of those living in
poverty in the Minority region is relatively low, this is not so for the minority populations in these
counties - a display of a race/ethnicity gap. In both surveys in all target communities participants
were largely wealthy so questions raised about how poverty affect breast care cannot
adequately be answered based on the survey results.
In the Appalachian Priority 1 region, the Affiliate wondered if the lack of treatment options seen
in the HSA affected screening percentages. While this question was not specifically posed,
none said that not affording treatment if something is wrong was a barrier to screening. The only
respondent in the Priority 2 region receives mammograms regularly so this question was not
asked of them. Very few surveyed in the Minority target region stated they cannot afford a
mammogram. Key informant interviews mentioned cost as a barrier to screening and treatment
but this was not reflected in the surveys. All Appalachian Priority 1 and 2 counties are either a
Medically Underserved Area or Population in the QDR. Key informant interviews in these
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regions concurred, saying how there were few specialists and imaging centers. Lack of
providers or medical service did not come up during the Minority interviews; only two counties in
this region are Medically Underserved Areas.
Late-stage diagnosis percentages reported in the breast cancer survivor survey were lower than
that of late-stage percentages found in the QDR; this is because the sample size was too small
to compare accurately. For target counties with regards to educational attainment at high school
or less, the values ranged widely. Percentages in the breast cancer survivor and general
population surveys were much less than in the QDR. For those reporting a screening
mammogram in the past two years, the QDR reported a rate lower than that seen in the general
population surveys in Appalachian Priority 1 and 2 regions (Minority region: NA).
Both Appalachian Priority 1 and 2 regions were shown to have few options for patient
navigation, support groups, survivorship, and follow-up. Breast cancer survivor survey takers
asked for more education about what is happening to you when you get diagnosed. Minority
counties have greater access to hospitals, support groups, local coalitions/programs, and
patient navigation resources than Appalachian counties. Surprisingly, survey takers and
interviewees in the Minority target region emphasized the need for more contact with survivors,
support groups, and help navigating through the breast cancer journey, even though there are
many resources in this community aimed at these needs.
Breast cancer survivors surveyed in the Minority target region reported a lack of health literacy
with regards to being informed of complimentary or alternative therapies despite there being
multiple options in this region for other therapies besides traditional ones such as surgery,
radiation, and chemotherapy. Appalachian Priority 1 and 2 survey respondents reported they did
not learn of these optional therapies at all, and the Affiliate noted the lack of these in the HSA.
While the Affiliate does not currently have many partners in the two Appalachian communities,
key informant interviews in these regions listed numerous possibilities and suggestions for who
to partner with. Suggestions that the Affiliate had come up with in the HSA for developing and
furthering breast health services in target communities were reiterated during key informant
interviews. Partnering with health departments, community health centers, extension offices,
and hospitals will help to provide educational material and devise ways how the amount of
resources can be increased, especially in the two Appalachian Priority regions. In addition to
partnering with the organizations which already have a firm hold and influence in these regions,
the Affiliate should increase its presence in target regions through organizing or attending health
fairs. Komen Lexington has a large amount of educational material including pamphlets and
brochures that it could distribute more widely. Other ideas that came up in the key informant
interviews were partnering with churches and attending local community events, both of which
were discussed in the HSA
These communities could also benefit from increased transportation service opportunities that
may be remedied by focusing on partnership building beginning with those key informants
interviewed. Breast cancer survivors in the two Appalachian regions did not mention
transportation as a specific issue, but the Affiliate is aware of how difficult transportation to and
from these rural communities can be. Respondents in the Minority region specifically mentioned
wishing they had someone to take them to appointments or to provide transportation.
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With the expansion of Medicaid in Kentucky, uninsured individuals may be able to gain health
insurance coverage. The majority of survey takers in the Minority region reported having health
insurance, and only one person in the Appalachian Priority regions reported no insurance. Lack
of insurance was not a major disparity among those interviewed. As for the implementation of
the Affordable Care Act (ACA), the most frequently given responses were either no change,
they can now seek medical services if needed, or were unsure of how it affected them.
Physicians were expected to have many new patients because of the ACA, and one key
informant noted that more appointments had been scheduled since the implementation of the
ACA, and that this may even be considered a barrier to screening now since there are fewer
available appointments. Another way the Affiliate noted that it needed to increase resources and
partnerships is to involve local government, a sentiment reaffirmed during the key informant
interviews where one individual stated that Komen Lexington should consider employing
techniques to allow women with low-income or status to reach out to policymakers. Since more
women will be eligible for health insurance, the number of women eligible to receive the
services of the Kentucky Women's Cancer Screening Program (KWCSP) has decreased.
However, KWCSP continues to provide screenings to low-income and underserved women who
are not insured, as well as assisting women in getting insurance through expanded Medicaid or
the state health insurance marketplace. At least half of the population surveyed in every target
community had not heard of the KWCSP. If community members are not aware of KWCSP and
its services, some needy individuals will not be reached.
Conclusions
Many conclusions can be linked to the qualitative data. With regards to the breast cancer
survivor surveys, most survivors stated that they had enough information about their cancer but
some still found it took a lot of time to find this information. Additional educational information
should be made available to survivors upon request, and they should not feel forced to search
for the information on their own unless they want to; this might help alleviate concerns with the
quality of information as well. The majority expressed positive remarks about their doctor being
respectful and explaining things. This is hopeful, but improvements could be made. For
instance, just over half of respondents felt their chemotherapy treatment was explained in a way
they could understand. Perhaps more user-friendly material needs to be created or existing
materials distributed to explain the chemotherapy process in a clearer manner. Just over 12
percent in the Minority region said they were not told where to get medical supplies or were not
informed of the side effects and complications of treatment while the results were mixed in the
Priority 1 region; this can be fixed with providers explaining more about where to go to get posttreatment supplies and of possible side effects, or brochures can be created that inform
individuals of the closest locations in their community to purchase supplies. More educational
material about possible side effects can be created or disseminated more effectively.
The majority of breast cancer survey respondents (over 70 percent) stated they felt like they had
privacy and comfortable treatment areas, but there is room for improvement; future facilities and
renovations should keep patient privacy and comfort in mind (e.g., private treatment rooms,
spacious and bright waiting rooms with comfortable seating, etc.). Self-breast awareness needs
to continue to be taught to individuals starting at a young age as this is still an important tool to
monitor any breast changes; reminders of the importance of mammograms and clinical breast
exams should still be taught as well. With more awareness of the importance of breast health
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and tools to stay aware of any breast health changes, the rates of late-stage diagnosis should
decline. The most drastic number was that over 79 percent reported not being informed of
complimentary, alternative, or unconventional therapies. While these therapies may not be for
everyone, it is very important that individuals have a choice regarding the care they receive and
are as informed as possible to make the best health care decisions for themselves. This
appears to be a weakness in the service area as a whole that can be remedied with increased
educational materials on these subjects.
The Affiliate should take note of the suggestions for improvement that breast cancer survivors
provided. Health care providers and the Affiliate should try to encourage survivors throughout
the process and provide educational materials. The Affiliate should also look into creating a
survivorship program that would pair a survivor with a newly diagnosed person, as this
suggestion arose multiple times during surveys and interviews. Keeping a journal was another
frequent suggestion, and Komen Lexington would like to develop a planner for this purpose.
Additionally, the Affiliate should consider funding more organizations that would provide
services besides health care to cancer patients e.g., childcare, money to cover bills such as
electric or water, gas cards and other transportation expenses, etc. Health care providers
should be encouraged to explain more thoroughly what to expect after surgery, such as what
the patient will look like and what type of recovery process to expect. Support groups were
suggested by many, and the Affiliate should make visible the support groups available and
operating in the whole service area.
With regards to the general population survey, over 91 percent knew general information about
breast cancer such as the risk increasing with family history. The majority also considered
themselves educated on breast cancer. The Affiliate makes an effort to educate all people about
breast health and cancer, and with the support of partners and educational campaigns it
appears that an impact is being made in the area of general knowledge. More than 48 percent
of individuals selected they would prefer to go to an OB/GYN first for medical services related to
breast health, so the Affiliate should consider making sure these specialists have up-to-date
information about all further diagnostic services and programs in their region. Health events was
the most frequent response for the best way to provide breast health services, a sentiment
echoed in the key informant interviews. Again, the Affiliate should attend or help coordinate
health fairs. Komen Lexington should also increase its media presence to reach out to more
individuals via television, newspaper, and radio. The majority of individuals who have had a
mammogram before have gotten one within the past two years, which suggests women are
staying on top of their breast health. Over 62 percent said they get a mammogram annually; this
is important as regular screenings are crucial to monitoring breast changes.
It is not surprising that there were differences between the breast cancer and general population
surveys. It is to be expected that breast cancer survivors would be more aware of what Susan
G. Komen is, a breast health and cancer resource. More breast cancer survivors in Appalachian
Priority 1 and the Minority region knew that Komen Lexington served their county. It was the
opposite in Appalachian Priority 2. Just over half from each survey in the Minority region had
heard of the Kentucky Women's Cancer Screening Program, and rates were lower than that in
the other communities. This is an important resource that not enough individuals are aware of
and therefore are not utilizing. Even though the ACA did not have an impact on most individuals'
health insurance, there was a portion of respondents who stated they could now seek services
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due to the implementation of this legislation. The race/ethnicity reported on the surveys were
more diverse than data from the target populations in the QDR, but the Affiliate concludes
having more responses from minority populations was helpful, particularly since there is a
Minority target region.
Both populations seemed to have an idea of what Komen does - educate the community and
collaborate with other community organizations were the most common responses, so the
outreach that Komen Lexington is doing does appear to be making people aware of the
organization’s role in the community. Conducting research and screening were also high on the
list. As the Affiliate only indirectly participates in these activities it would be beneficial to provide
more tailored descriptions of the organization. Annual income and education were both skewed
towards the high end. The difficulty in reaching minority and underserved populations is wellknown in research, though the Affiliate should strive to reach these groups to include their voice
in decisions for the Affiliate. There were high percentages of female survey takers which is to be
expected for breast cancer survivors since the majority are women. However, a more
representative sample needs to be collected next time with percentages of each sex closer to
actual numbers for the general population survey. Most survey responses were from residents
of Fayette County, which is to be expected since this is the location of Komen Lexington and the
county with the largest population served by the Affiliate. Future data collection should include a
more concentrated effort to obtain survey participants residing outside Fayette County. Efforts
were made to reach out to gay, lesbian, bisexual, and transgender organizations, but the
Affiliate has no way of knowing if percentages identifying as such in the surveys is on par with
average, as accurate counts are hard to find.
With regards to focus groups, participants also believed that Komen Lexington provides
outreach and education, which is in line with survey responses and is accurate. The Affiliate can
work with and promote grantees more, focus more on local partners and information, and try to
make educational material more culturally diverse and locally specific. The Affiliate should put
extra effort into finding and helping uninsured or underinsured women get the resources they
need, or at least connect them with other partners who will be able to help. Barriers to screening
and treatment that focus group participants listed should also be targeted: lack of education,
access, fear, transportation, and language barriers can all be overcome. Some of these will be
more time consuming to accomplish than others, and the Affiliate needs to partner with local
organizations to alleviate these barriers. In all efforts, cultural sensitivities should be kept in
mind in order to reach as many individuals as possible.
With regards to key informant interviews, there were several notable conclusions. Due to
decreased funding, health departments are not generally able to provide follow-up services
outside of a referral capacity. If health departments cannot get enough funding on a government
level to cover services, organizations like Komen Lexington who have grant funding
opportunities are a good alternative funding option. Common motivations to obtaining regular
mammograms were knowing someone who had had breast cancer, wanting to take care of
themselves, and doctors informing and motivating them. The Affiliate should encourage
providers to discuss the importance of breast health screenings during regular physician visits.
Common reasons why minority or underserved women do not seek regular screening included:
lack of knowledge, cost, fear, distrust of the system, and not knowing where to access care.
Many times during the key informant interviews individuals stated that there are programs out
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there that will help with barriers such as cost, but that community members are not aware of
them. Komen Lexington should encourage the providers of these programs to increase their
advertising; the Affiliate should also be made aware of these programs so it can promote them
as well. Komen Lexington has access to a wealth of breast health information that it should
provide to communities. Fear and distrust of health care systems can be deep-rooted in cultural
explanations, but the Affiliate can help by creating culturally diverse educational material and
educating providers on cultural differences. To increase effectiveness of disseminating this
breast health information, educational materials should be disseminated by people who are
active participants in their diverse communities. Also mailings, varied media forms of
advertisements, and health fairs are all ways in which the Affiliate can get the information out to
the community.
Ages of women most in need of breast cancer services in the communities varied, but tailoring
educational outreach to various age groups should help the Affiliate reach as many women as
possible. Most common recommendations to improve breast health care were more education,
more access to free and low cost services, and mobile mammography vans. The Affiliate is
partnered with organizations that currently have mobile mammography vans and tries to have
screening events at least twice a year. More events in counties without imaging centers could
have a big impact. There are several programs already available, some of which are funded in
part by Komen Lexington, which provide free or low cost services. More advertising for these
programs would be beneficial, as would hosting community events and health fairs to help
spread the message. Barriers to getting routine breast health care were lack of knowledge, cost,
transportation, and fear. To reduce these barriers, the Affiliate should again disseminate
culturally specific educational material, encourage providers to remind patients of the
importance of regular screening, and fund programs that provide transportation help. The main
suggestions for funding priorities were patient care services, education, and transportation. The
Affiliate should consider focusing more on granting organizations that plan to help women with
care services, information, and transportation expenses. Partnering with health departments,
doctors/hospitals, extension offices, and other nonprofits should help low income or
underserved women receive the breast health education they need.
With regards to survivor interviews, three out of four definitively stated a self-breast check or
routine mammogram discovered their cancer, signifying the importance of being aware of your
own breasts and breast health. The two survivors who experienced mastectomies complained
of a longer and more painful recovery. Providers should make sure that patients are aware of all
their surgical options (not just the most drastic ones), non-surgical options, and prepare them
more for what they will experience after surgery or other treatment such as chemotherapy and
radiation. More educational material about possible side effects or where to get post-surgical
supplies can be created or disseminated. Survivors also expressed the need for the Affiliate to
create a survivorship program.
Convenience sampling was very helpful in getting survey responses and focus group
participants; however, it appears to have led to biased data. Snowball sampling was also
beneficial but the Affiliate has no way of knowing if hard to reach populations or groups were
contacted through this form of sampling and whether it increased the representation of the
population. Purposive sampling led to selection of key informant interviews and was very
helpful, but bias from this form of sampling may still have occurred despite the Affiliate's efforts.
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Using the internet for surveys helped keep costs low and resulted in quick responses. Those
that do not have or have adequate enough internet were excluded from this form of surveys.
Phone interviews were helpful in building a personal rapport and getting detailed answers; there
were some limitations such as timing issues and no control over who answered the phone. Face
to face interviews allowed for open-ended questions in great detail. Limitations included amount
of time it took to complete these interviews and monetary cost. Despite strengths and limitations
to data methods, valuable information was still collected.
Overall, the Affiliate has a good idea of where there are weaknesses and what the strengths are
within the target communities. Key informant interviews were especially beneficial in the two
Appalachian communities. Educational deficiency came up repeatedly. Providing easy to
understand and culturally specific informational materials is the first step in educating everyone
about the importance of breast health. Organizations in target communities are willing to help
Komen Lexington fill in the gaps of care, and partnering with these community members
facilitates reaching and helping more people. Reducing transportation and access to care
barriers should be made a primary focus. Some of these changes can be implemented quickly,
such as disseminating breast health information and promoting programs that help with cost of
screening and treatment. However, many of the needed changes may take several years to
implement, including: more imaging facilities, greater access to services in rural areas, more
mobile mammography vans, and retaining information which will lead to changing screening
habits. There is still work to be done, but valuable input from survivors, community members,
medical providers, and health professionals have given the Affiliate a roadmap to eliminate
barriers and improve the breast health of women across the service area.
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Mission Action Plan
Breast Health and Breast Cancer Findings of the Target Communities
The quantitative data revealed that late-stage diagnosis percentages for the three target
communities were: 29.3 percent (early stage: including both in situ and local) and 33.5 percent
(early stage: including only local) for Appalachian Priority 1 target region, 41.1 percent (in situ
and local) and 44.6 percent (local) for Appalachian Priority 2 target region, and 23.8 percent (in
situ and local) and 29.2 percent (local) for the Minority target region. Appalachian Priority 1 and
2 counties are all classified as rural and either Medically Underserved Areas or Medically
Underserved Populations, while Minority target region counties are all classified as urban and
two counties (Fayette and Scott) are Medically Underserved Areas. Percentage of those living in
poverty varied from 33.8 to 36.4 percent in Appalachian Priority 1 target region, 26.8 to 30.8
percent in Appalachian Priority 2 target region, and 11.5 to 18.2 percent in the Minority target
region. Median household income ranged from $19,000 to $22,000 in Appalachian Priority 1
target region, $21,000 to $27,000 in Appalachian Priority 2 target region, and $40,000 to
$60,000 in the Minority target region. Percentages of those without medical insurance varied
from 17.7 to 19.4 percent in Appalachian Priority 1 target region, 19.4 to 21.2 percent in
Appalachian Priority 2 target region, and 13.0 to 19.8 percent in the Minority target region.
Unemployment percentages ranged from 10.9 to 14.4 percent in Appalachian Priority 1 target
region, 9.5 to 13.3 percent in Appalachian Priority 2 target region, and 5.8 to 8.0 percent in the
Minority target region. Percentages for individuals with less than a high school diploma or
equivalent varied from 34.6 to 41.1 percent in Appalachian Priority 1 target region, 30.1 to 35.1
percent in Appalachian Priority 2 target region, and 11.3 to 19.7 percent for the Minority target
region. Average population percent for Black/African-Americans in the Appalachian Priority 1
and 2 target regions was 2.0 percent, while the number was slightly higher (6.3 percent) in the
Minority target region. Average population percent for Hispanic/Latinos in Appalachian Priority 1
and 2 target regions was 1.8 percent, and 4.8 percent for the Minority target region.
Select breast cancer indicators and outcomes for Appalachian Priority 1 and 2 regions included:
 total at-risk population was 173,693;
 total new female breast cancer cases (2008-2011) was 266;
 average crude incidence rate (2008-2011) was 153.2 per 100,000;
 total female breast cancer deaths (2008-2011) was 81;
 average crude death rate (2008-2011) was 46.6 per 100,000;
 average percent screening mammography in the last two years (female 50-74) was 52.3
percent;
 average late-stage (III and IV) diagnosis in 2010 was 35.1 percent;
 age-adjusted incidence rates for invasive cancer (per 100,000) were 121.2 (Priority 1)
and 121.9 (Priority 2);
 age-adjusted death rates per 100,000 were 41.9 (Priority 1) and 33.0 (Priority 2); and
 age-adjusted late-stage diagnosis rates per 100,000 were 41.1 (Priority 1) and 58.1
(Priority 2).
For the Minority target region, numbers given are for the Black/African-American population:
 total at-risk population was 110,016;
 total new female breast cancer cases were 115;
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
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average crude incidence rate was 115.8 per 100,000 (Fayette and Scott Counties only);
total female breast cancer deaths were 27;
average crude mortality rate was 28.7 per 100,000;
age-adjusted incidence rates for invasive cancer (per 100,000) were 123.9;
age-adjusted death rates per 100,000 were 22.9; and
age-adjusted late-stage diagnosis rates per 100,000 were 37.8.
Total female breast cancer deaths and average crude mortality rate in the Minority target region
only represented data from Fayette County as data were suppressed due to small numbers of
cases. Average percent screening mammography in the last two years and average late stage
(III and IV) diagnosis were not provided.
The Community Profile Team analyzed and compiled these data to determine target areas. Key
risk factors for Affiliate counties were analyzed including: rural or urban status, Medically
Underserved Area (MUA) or Medically Underserved Population (MUP), proportion of population
living in poverty, proportion of minority population, proportion of medically uninsured, age
adjusted invasive cancer incidence rates [female breast] (2008-2011), age adjusted cancer
death rates [female breast] (2008-2011), and late-stage diagnosis rates [female breast] (20082011).The selected county-level variables were first stratified into two groups [Demographic
(living in poverty and without medical insurance) and Cancer variables (Age-Adjusted Incidence,
Age-Adjusted Mortality, Late Stage Diagnosis (III and IV))], ranked within these two groups from
lowest rates to highest rates and then combined into the final ranking.
From these findings and through this process, the target communities were selected. This data
led the Community Profile Team to wonder whether the implementation of the Affordable Care
Act (ACA) and the expansion of Medicaid would make an impact on uninsured rates; if a lack of
insurance, low-income, rural setting, minority status, or low education levels has affected
screening mammography rates; and investigating how different the three communities would be
when comparing and contrasting data. These were all items noted for further investigation.
The Health System Analysis revealed that counties in Appalachian Priority 1 target region had
few resources: three health departments, three community health centers, and one hospital.
There is at least one mammography center in each county in this region. The facilities in this
region offer breast health screenings, but little to no treatment options. Patient navigation
options are limited, as are support group offerings and follow-up/survivorship options. Komen
Lexington has few partnerships in this region, but partnering with existing organizations such as
health departments and working with programs such as the Kentucky Women's Cancer
Screening Program (KWCSP) may be beneficial in reaching target populations.
Appalachian Priority 2 target region counties also have few resources. These include three
health departments, two hospitals, and four community health centers. McCreary County does
not have a mammography center like the other counties in this region. As with the Appalachian
Priority 1 target region, there are screening options but few to no treatment options, breast
cancer support groups, and few follow-up/survivorship options. Current partnerships are limited,
but as with the Appalachian Priority 1 target region working with established organizations is the
first step to helping this population attain access to services they need.
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The Minority target region has many resources, in fact, more resources than both Appalachian
priority regions put together. There are six health departments and eight hospitals, along with
medical group facilities, community health centers, free clinics, a breast center, outpatient care
center, health education center, and breast imaging center. Only Anderson County does not
have a mammography center. Treatment is available at multiple hospitals and breast care
centers. Fayette County offers the most extensive treatment options. There are 14 known
established breast cancer support groups in this region. There are opportunities for followup/survivorship, and several locations offer multiple types of complimentary therapies. Komen
Lexington has many established partnerships, including Baptist Health Lexington, the
Lexington-Fayette County Health Department, and Community Action Center. Individuals from
these organizations are active on committees and help Komen Lexington in advocating for a
healthy lifestyle. Churches in Lexington partner with the Affiliate for Pink the Pews, an event
where volunteers attend churches in their communities, make a small speech about breast
cancer awareness and what Komen Lexington does, and give out educational materials. The
Kentucky Department of Public Health and University of Kentucky College of Public Health
support committees and share resources.
Even though KWCSP is providing screening and diagnostic services, the Affiliate wanted to
know if people were aware of KWCSP as well as the impact of the ACA and expanded Medicaid
on access and screening. With Kentucky’s expanded Medicaid, people may still be unaware of
services they may be eligible for and not receive them. In addition, the Affiliate expects
increased access to breast health services especially for minority, poorly educated, and lowincome women. Even though the ACA has not been implemented for very long, the Affiliate was
interested in what type of impact it has made so far. In the Appalachian Priority 1 and 2 target
regions, the lack of resources for screening and treatment led Komen Lexington to consider how
big an impact this would have on breast health care. With the lack of partnerships in this region
it was imperative to investigate further who the Affiliate could partner with to get services to the
individuals in these communities, and what the most needed resources were. The Minority
target region does not appear to have a lack of resources, but Komen Lexington wanted to
know if there were cultural reasons or understandings why minority women are still not getting
screened as often.
The focus group participants in Appalachian Priority 1 target region revealed that this
community needs funding for breast health programs, an understanding of services,
identification of individuals that need services and then providing those resources, treatment
closer to home, more education, and increased awareness of services. Barriers to breast cancer
screening and treatment were fear, apathy, embarrassment, time constraints, lack of education
and access, fear that radiation will cause cancer, transportation, and cost. Recommendations
for partnerships included outreach to clinics, sponsorships, and attending local events.
The two breast cancer survivor surveys in the Appalachian Priority 1 target region showed that
one respondent wanted more information about their cancer, and one had heard of the KWCSP.
One respondent said they are now unable to access medical services if needed and the other
reported no change due to ACA implementation. Before diagnosis, one had received
mammograms and clinical breast exams while the other did not. The main suggestion for
improvement throughout the breast cancer experience included more education about what is
happening during cancer, complimentary therapies, and preventing recurrence.
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The 13 general population surveys in the Appalachian Priority 1 target region revealed the most
effective ways to disseminate breast health information were newspaper, radio, health events,
and internet. Just over 61 percent had heard of the KWCSP. With regards to the ACA, 23.1
percent said they could now seek medical services if needed, 53.8 percent reported no change,
and around 15 percent were unsure. A little over 46 percent perform self-breast exams, 84.6
percent get clinical breast exams, and 80.0 percent had mammograms. Reasons for not getting
mammograms included: under age 40, no family history of breast cancer, don't know what a
mammogram is, don't have medical insurance, and don't know where to get a mammogram.
most common reasons why minority or underserved women don't seek screening were cost, low
education level, belief that breast cancer is not going to happen to them, transportation, and not
aware of the importance of screening. Cultural factors or reasons that might explain this were
low levels of education and fear that any issues could be cancer. Recommendations to improve
breast healthcare services were education, getting the word out regarding available services,
and more access to screenings in rural communities. Top barriers that keep women from getting
routine breast healthcare were education status, income status, transportation, not aware of
available services, and fear. To reduce these barriers, key informants suggested educating
more while patients are in clinics, getting the word out about available services, and
transportation help. Suggested priorities of funding were educational materials through various
media, help with cost and patient services, help with transportation, and mobile mammography.
Suggestions of who to partner with to disseminate information on breast health and screening
were health departments, doctors, hospitals, cancer liaisons, and extension offices.
The two breast cancer survivor surveys in Appalachian Priority 2 showed that one respondent
wanted more information about their cancer. Neither survey taker had heard of the KWCSP.
With regards to the ACA, one reported no change while the other stated they could now seek
medical services if needed. Prior to diagnosis, both had performed self-breast exams and
received clinical breast exams, while one had mammograms as well. The main suggestions for
improvement were: wishing Komen services had been offered, moving forward with treatment
quickly, making a plan, considering all options, and learning about side effects.
The one general population survey in the Appalachian Priority 2 target region revealed that the
respondent thought the most effective ways to disseminate breast health information were
newspaper, radio, and health events. They had heard of KWCSP and reported no change due
to the ACA. This respondent had performed self-breast exams, and received clinical breast
exams and mammograms.
most common reasons why minority or underserved women don't seek screening were lack of
knowledge, not knowing where to go for care, and cost. Cultural factors/reasons given to explain
this were women being dominated by men, reluctance to ask for help, fatalistic outlook, and that
it is a personal choice to get screened. Recommendations to improve breast health services
included funding for free low/cost services, maintaining a breast cancer coalition, health fairs,
mobile mammography vans, and partnering with local medical providers and non-profits. Top
barriers that keep women from getting breast health screening were lack of knowledge,
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transportation, cost, and no/few imaging centers in the counties. Frequent findings of what
needs to be done to reduce these barriers and improve access were: doctors reminding and
encouraging patients during regular check-ups, increasing funding for health departments and
non-profits, assisting with transportation, mobile mammography van services, providing
education through media, and worksite services. Suggestions for funding included: health
departments, education, and filling in the gaps that insurance does not cover. As to whom the
Affiliate should partner with to disseminate information; health departments, hospitals, local
providers, non-profit organizations, and extension offices were all answers given.
The three focus groups in the Minority target region said that cultural understandings and
sensitivities include being culturally competent in all ways (Black/African-American,
Hispanic/Latino, deaf, low-income, etc.), religion, and development of products for more varied
skin tones and hair types. Ideas for partnerships include more outreach, Komen funding, and
helping the individuals who need help the most. Komen Lexington can help serve the needs of
their community by partnering and communicating with more local organizations, helping
women with no resources or unsatisfactory insurance, and making educational material
culturally diverse and locally specific. The main barriers to screening and treatment appear to be
language barriers, fear, cost, transportation, lack of education, and lack of access.
The 36 breast cancer survivor surveys in the Minority target region revealed that 25.0 percent
wanted more information about their cancer, and only 52.8 percent had heard of the KWCSP.
With regards to the ACA, 47.2 percent reported no change, 27.8 percent were unsure, and 16.7
percent said they could now seek medical services if needed. Before diagnosis only 2.8 percent
reported no prior screening activities. The main suggestions for improvement were: more
education about the entire breast cancer experience, more support from those that had gone
through it, keeping a journal, and speaking with cancer survivors.
The 168 general population surveys in the Minority target region showed that the most effective
ways to disseminate breast health information in this region was television, health events,
internet, and newspaper. Just over 52 percent had heard of the KWCSP. Nearly 64 percent
reported no change, 14.5 percent were unsure, and 13.9 percent could now seek medical
services if needed due to the ACA. 59.5 percent performed self-breast exams, while at least 76
percent have had a clinical breast exam or mammogram. Most common reasons why
individuals do not get mammograms were that they were under age 40, had no family history,
and were worried about the pain of a mammogram.
The twelve key informant interviews in the Minority target region revealed that the most common
reasons minority or underserved women don't seek breast health screening were not knowing
where to access services, lack of insurance and transportation, fear, and distrust of system.
Cultural factors or reasons that may explain this were: generalization of Hispanic/Latino culture,
unworthiness to seek services, and distrust. Recommendations to improve breast health
services included mobile mammography, education, and continuing to fund health departments.
Top barriers that keep women from getting routine breast healthcare were: lack of education,
uninsured status, transportation, fear, and language barriers. What needs to be done to reduce
these barriers included partnerships, increased funding for community education, media
outreach, mobile mammography, and free/low cost screenings. Suggestions for funding were:
education, transportation, more cancer care supplies, and helping with all cancer expenses. The
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Affiliate could partner with churches, doctors, hospitals, non-profits, school systems, women's
groups, and libraries to disseminate breast health information. Health departments are able to
provide some education and outreach services, but are limited in after care and follow-up
options. Survivor interviews showed that one individual was not informed about post-surgical
care and wanted more information about the breast cancer process. Two survivors expressed
the need for a survivorship program. Support groups were helpful for two survivors, but one said
she was uncomfortable talking about her journey during support group meetings.
Findings included that some survey respondents had been helped by the ACA, but most were
unsure or unchanged. Neither lack of insurance, low-income, rural setting, minority status, or
low education levels seems to have affected screening mammography rates, although these
rates were self-reported on surveys. Key informants mentioned all of these as barriers to care,
and also described cultural reasons why this may be; potential partners were suggested. Many
people are not aware of the KWCSP or of what Komen does.
As the Community Profile Team compared the three data methods (Quantitative Data Report,
Health System and Public Policy Analysis, and qualitative data) and found similar patterns, the
Team concluded that lack of education/outreach and lack of culturally diverse-educational
material is a main barrier in all three target regions. For the Appalachian Priority 1 and 2 target
region counties, access to breast health care was another main barrier. In the Minority target
region counties, lack of culturally sensitive outreach and a comprehensive survivorship program
were seen as main barriers.
Mission Action Plan
Clay, Jackson, and Owsley.
o In FY16, visit each county in the target region, attending at least two community
events in Clay County, at least two events in Jackson County, and at least one
event in Owsley County to increase awareness about Komen Lexington and the
services available.
o By FY17 meet with at least five key informants in Clay, Jackson, and Owsley
specific.
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In FY17, disseminate 3,000 culturally appropriate educational materials to at
least two providers in Clay County, 1,500 in Jackson County, and 500 in Owsley
County.
Priority 2: Increase the amount of grants targeting access to educational-based
programs and availability of services in the counties of Clay, Jackson, and Owsley.
workshops.
community.
priority will be evidence-based education programs that focus on women in Clay,
Jackson, and Owsley Counties.
o

Problem Statement: Clay, Jackson, and Owsley Counties are rural and classified as Medically
Underserved Areas. The health system analysis found that facilities in this region offer some
breast health screenings but little to no treatment options. Some patient navigation is offered but
there are opportunities for more development in this rural area. There are limited followup/survivorship options such as complimentary therapies. The focus group noted that increased
funding and access to services closer to home would be beneficial. Transportation, cost, and
lack of mobile mammography units are barriers to screening services seen in key informant
interviews.
 Priority 1: Reduce barriers to access for breast health care in the counties of Clay,
Jackson, and Owsley.
o By FY17, meet with at least five key informants in Clay, Jackson, and Owsley
counties (Clay, Jackson, and Owsley).
o By FY18, meet with current mobile mammography partners to discuss their
capability of serving these counties, what can be done moving forward regarding
screening services in this region, and to emphasize the need for mobile
mammography services in Clay, Jackson, and Owsley Counties.
priority will be mobile mammography programs that can provide at least one
mobile screening day in each of the following counties: Clay, Jackson, and
Owsley.
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Clinton, McCreary, and Wayne.
o In FY16, visit each county in the target region, attending at least one community
event in Clinton County, at least two events in McCreary County, and at least two
events in Wayne County to increase awareness about Komen Lexington and the
services available.
o By FY17 meet with at least five key informants in Clinton, McCreary, and Wayne
specific.
o In FY17, distribute 1,500 culturally appropriate educational materials to at least
two providers in Clinton County, 2,500 in McCreary County, and 3,000 in Wayne
County.
 Priority 2: Increase the amount of grants targeting access to educational-based
programs and availability of services in the counties of Clinton, McCreary, and Wayne.
workshops.
existing community organization within each of these counties by FY18 in order
to discuss how to collaborate and get breast health services to the community.
o Beginning with the FY16 Community Grant Request for Application, a key
funding priority will be evidence-based education programs that focus on women
in Clinton, McCreary, and Wayne Counties.
Problem Statement: Clinton, McCreary, and Wayne Counties are rural. Clinton and Wayne
Counties are classified as Medically Underserved Areas, and McCreary County is classified as
a Medically Underserved Population. The health system analysis found that facilities in this
region offer some breast health screenings but little to no treatment options. McCreary County
does not have a mammography center. Some patient navigation is offered but there are
opportunities for more development in this rural area. There are limited follow-up/survivorship
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options such as complimentary therapies. Transportation, cost, and lack of mobile
mammography units are barriers to screening services seen in key informant interviews.
 Priority 1: Reduce barriers to access for breast health care in the counties of Clinton,
McCreary, and Wayne.
o By FY17, meet with at least five key informants in Clinton, McCreary, and Wayne
counties (Clinton, McCreary, and Wayne).
o By FY18, meet with current mobile mammography partners to discuss their capability
of serving these counties, what can be done moving forward regarding screening
services in this region, and to emphasize the need for mobile mammography
services in Clinton, McCreary, and Wayne Counties.
o Determine count of how often mobile mammography units come to McCreary
County; increase by a minimum of one visit per year by end of FY19.
o Beginning with the FY16 Community Grant Request for Application, a funding priority
will be mobile mammography programs that can provide at least one mobile
screening day in each of the following counties: Clinton, McCreary, and Wayne.
Problem Statement: While the overall percentage of those living in poverty in the Minority
target region is less than the Affiliate service area as a whole, this is not so for minorities in this
region. Bourbon and Fayette Counties have higher rates of uninsured than the rest of the
service area. The health systems analysis found many available resources in this region. Only
Anderson County does not have a mammography center. This region has many current
partners, but these partners are predominantly located in Fayette County. Focus groups
emphasized the need for the Affiliate to be culturally competent in all ways, increase amount of
products (e.g., wigs and prostheses) in various skin tones, increase education, partnering more
with local organizations, and reducing language barriers. Surveys showed that people needed
to be more educated about the goals and strategies of Komen and the KWCSP. Key informant
interviews found that barriers to care include generalization of Hispanic/Latino culture, distrust,
and inability to get off work for screening.
 Priority 1: Increase the amount of Minority specific educational outreach initiatives in the
counties of Anderson, Bourbon, Clark, Fayette, Scott, and Woodford.
o By FY18 visit each county in the target region and partner with community
organizations in each of the counties to either host or attend local events (e.g.,
festivals and health fairs), with an emphasis on educating Hispanic/Latino and
Black/African-American populations. Have women who are integrated in the
community and from Hispanic/Latino and Black/African-American backgrounds
attend with Komen representatives. Attend at least one event in Anderson
County, two events in Bourbon County, two events in Clark County, three events
in Fayette County, two events in Scott County, and one event in Woodford
County.
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In FY16 hold joint meetings at the Affiliate at least twice with a minimum 10 key
informants and current Komen Lexington committee members (Colors of Promise
and Lazos Que Unen) to get their perspective on the biggest educational issues
in the community and what the Affiliate can do to try to remedy those. Also
discuss how to go about increasing amount of products at breast cancer service
organizations that are pigmented for a wider array of skin tones.
o In FY17 disseminate 3,000 culturally appropriate education materials to at least
two providers in Anderson County, 2,500 in Bourbon County, 3,500 in Clark
County, 10,000 in Fayette County, 5,000 in Scott County, and 3,000 in Woodford
County.
program. Discuss strategies about how to educate Minority women about
KWCSP services, and how to reach the women who are still falling through the
o By FY19 expand Pink the Pews outreach outside of Fayette County to the five
other counties in this region (Anderson, Bourbon, Clark, Scott, and Woodford),
with a minimum of five churches in each county participating.
Priority 2: Increase the amount of grants targeting access to Minority specific
educational-based programs and availability of services in the counties of Anderson,
Bourbon, Clark, Fayette, Scott, and Woodford.
o From FY16 to FY19, host at least one grant writing workshop per year in each
county (Anderson, Bourbon, Clark, Fayette, Scott, and Woodford) in this target
community. Partner with and promote local organizations through these
workshops.
community.
priority will be evidence-based education programs that focus on minority and
vulnerable women (deaf, visually impaired, etc.), with special emphasis on
Hispanic/Latina and Black/African-American women in Anderson, Bourbon,
Clark, Fayette, Scott, and Woodford Counties.
o

Problem Statement: The health systems analysis revealed that support groups are widespread
in Fayette County, but the only other known support group in this region is in Clark County.
Despite the availability of support groups in Fayette County, more support services are needed
in Fayette as well as the other five counties (Anderson, Bourbon, Clark, Scott, and Woodford) in
this region. Breast cancer survivor survey respondents, attendees of focus groups, key
informants, and survivors interviewed in the target counties in this region expressed the need for
a survivorship program which would pair those recently diagnosed with someone who has
already gone through breast cancer.
 Priority 1: Create and implement a pilot survivorship program in Fayette County that will
focus on educating and supporting recently diagnosed individuals with breast cancer by
pairing breast cancer survivors of similar demographic and other social and cultural
commonalities with these individuals.
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By FY17 meet at least six times with established survivorship committee to
develop a program that will help supply the resources and knowledge that is
needed to make the best informed health care decisions possible for program
participants. Topics will include: where and from whom to get funding, what
supplies will be needed (e.g., baskets full of care items such as Komen t-shirts
and lotions for dry skin caused by treatment, and resource documents that will
include local information that may not be common knowledge such as where to
find post-surgical supplies and where to get information on reconstruction
options), steps that need to be taken to implement the program, how progress
will be evaluated (e.g., post-program surveys and notations in chronological
patient files), how participants will be monitored and tracked, and how cosurvivors of program participants, such as spouses and children, can be helped
as well.
In FY17 meet with hospitals and health care providers in Fayette County and let
them know about the program and its plans. Interview survivors on their
experiences: which doctors they went to, what products they used during
treatment and beyond, what they wish they had known, etc. Get feedback and
tweak program as needed.
In FY18, implement program in Fayette County working with health care
partners.
Beginning FY18 monitor the progress and impact of the program to determine
what works and what does not.
Tweak survivorship program as needed FY19-on. Discuss plans to implement
program in other Minority target counties, and what would need to be adjusted
per each county's needs. Discuss if current program could be adapted in
Appalachian Priority 1 and 2 regions and potential partners that could help in the
project's implementation.
o
o
o
o
o
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Komen Lexington 2015 Community Profile Report

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