COMMUNITY PROFILE REPORT 2011 Greater Cincinnati Affiliate of Susan G. Komen for the Cure

Transcription

1 COMMUNITY PROFILE REPORT 2011 Greater Cincinnati Affiliate of Susan G. Komen for the Cure 2011

2 Disclaimer: The information in this Community Profile Report is based on the work of Susan G. Komen for the Cure Greater Cincinnati Affiliate in conjunction with key community partners. The findings of the report are based on a needs assessment public health model but are not necessarily scientific and are provided "as is" for general information only and without warranties of any kind. Susan G. Komen for the Cure and its Affiliates do not recommend, endorse or make any warranties or representations of any kind with regard to the accuracy, completeness, timeliness, quality, efficacy or non-infringement of any of the programs, projects, materials, products or other information included or the companies or organizations referred to in the report. i

3 Acknowledgements Susan G. Komen for the Cure Greater Cincinnati Affiliate would like to extend a profound thank you to the organizations and community members who assisted with this effort. Community Profile team members: Linda Croucher Board Member Breast Cancer Alliance of Greater Cincinnati (BCA) Breast Cancer Survivor Karyn Ganaway-Balog Board Member- President-Elect Susan G. Komen for the Cure Greater Cincinnati University of Cincinnati, College of Nursing Breast Cancer Survivor Coleen Kern Proctor & Gamble, Purchasing Manager Breast Cancer Survivor Peggy Isenogle Executive Director Susan G. Komen for the Cure Greater Cincinnati Affiliate Breast Cancer Survivor Susan Sprigg Graduate Assistant University of Cincinnati, Public Health Nicole Suggs Health Education Coordinator YWCA of Greater Cincinnati Aimee Tillett, BSH, CHES Member-at-large Amy Weber, M.Ed., CPS, CHES Graduate Assistant University of Cincinnati, Health Promotion and Education 2011 Community Profile Team Leader A special thank you goes out to all of the organizations, agencies, and businesses that made this report possible: First and foremost, area breast cancer survivors for offering their valuable input and perspectives on their experience Adams County Health Department Adams County Regional Medical Center American Cancer Society ii

4 Boone County Cooperative Extension Service Boyd Cancer Clinton Memorial Hospital Brown County General Hospital Brown County Health Department Breast Cancer Alliance of Greater Cincinnati (BCA) Cancer Family Care Darke County General Health District Dearborn County Hospital Gallatin County Health Department (Three Rivers District Health Department) Grant County Public Library Greene County Health Department HealthSource of Ohio Highland County Health Department Kenton County Public Libraries Kentucky Department of Health and Human Services Kettering Breast Evaluation Center Kettering Medical Center Lawrenceburg Public Library Miami County Health District Northern Kentucky District Health Department NorthKey Community Care Northside Public Library Pink Ribbon Girls Premier Health Network Proscan Imaging St. Elizabeth Healthcare Southeastern Indiana Cancer Health Network Su Casa Centro Hispano The Wellness Community of Greater Cincinnati Three Rivers District Health Department University of Cincinnati Wayne Healthcare Women s Center- Mercy Hospital Anderson Yellow Springs Public Library and volunteer graduate students from University of Cincinnati s Public Health, Nursing, and Health Promotion & Education programs (assisted in conducting area focus groups) iii

5 Table of Contents Executive Summary...1 Introduction...1 Statistics and Demographic Review...1 Breast Cancer Impact in Service Area...2 Health Systems Analysis...3 Breast Cancer Perspectives.4 Conclusions/Priorities.5 Introduction...6 Affiliate History...6 Organizational Structure..7 Description of Service Area.7 Purpose of Report.8 Breast Cancer Impact in the Affiliate Service Area 9 Methodology..9 Overview of Affiliate Service Area..9 Communities of Interest..13 Health Systems Analysis of Target Communities...21 Overview of Continuum of Care..21 Methodology/Overview of Findings 25 Breast Cancer Perspectives in the Target Communities 28 Methodology/Overview of Findings 28 Conclusions: What We Learned, What We Will Do...33 Review of Findings...33 Affiliate Priorities.35 Action Plan...37 References iv

6 Figures and Tables, 2011 Community Profile Figures Figure 1. Greater Cincinnati Affiliate for Susan G. Komen for the Cure Service Area Figure 2. Affiliate Organizational and Staffing Structure Figure 3. Population Age, by percent (females & males) Figure 4. Population Ethnicity/Race, by percent (females & males) Figure 5. National, State Mortality Rates, 2007 & 2010 Figure 6. County Mortality Rates Figure 7. Stage of Diagnosis Regional & National Rates Figures Stage of Diagnosis, by County and Ethnicity/Race Figure 12. Incidence Rates, 2007 & 2010 Figure Actual and 2014 Projected Incidence Rates (per 100,000) Figure 14. Women Reporting No Mammogram in the Past 12 Months Figure 15. African American Women, by County (Top Six Counties) Figure 16. Hispanic/Latina Women, by County (Top Seven Counties) Figure 17. Breast Health Continuum of Care, Greater Cincinnati Affiliate Figure 18. Area Providers (Includes Mammography Sites) Figure 19. Mammography Sites Only Figure 20. Affiliate funded Community Health Programs, FY2011 Figure 21. Service Types Provided by Service Providers in Affiliate Area Figure 22. Photovoice: When I Found Out/My Diagnosis (I) Figure 23. Photovoice: When I Found Out/My Diagnosis (II) Figure 24. Photovoice: My Treatment Figure 25. Photovoice: My Support Tables Table 1. Regional Areas of Concern Table 2. Adams County Areas of Concern Table 3. Brown County Areas of Concern Table 4. Clinton County Areas of Concern Table 5. Darke County Areas of Concern Table 6. Gallatin County Areas of Concern Table 7. Grant County Areas of Concern Table 8. Highland County Areas of Concern Table 9. Miami County Areas of Concern Table 10. Ohio County Areas of Concern Table 11. Preble County Areas of Concern Table 12. Switzerland County Areas of Concern Table 13. Key Informants and their Agency or Community of Representation v

7 Executive Summary Introduction About Susan G. Komen for the Cure Ambassador Nancy G. Brinker, founding chair of Susan G. Komen for the Cure, promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982, that promise became Susan G. Komen for the Cure, which is the world s largest breast cancer organization and the largest source of nonprofit funds dedicated to the fight against breast cancer with more than $1.98 billion invested to date. For more information about Komen for the Cure, breast health or breast cancer visit or call GO KOMEN. About the Greater Cincinnati Affiliate of Susan G. Komen for the Cure Founded in 1997 as Susan G. Komen for the Cure Greater Cincinnati Race for the Cure (RFTC), this Affiliate has grown from a RFTC event with 2,700 participants realizing an approximate $170,000 in revenue to a combined Race/Affiliate revenue of over $1.8M in FY2010. In the last 13 years, the Affiliate has funded over $6.3M in local programs to address screening, education, and treatment of breast cancer. Additionally, we have contributed just over $2M toward the Susan G. Komen for the Cure Breast Cancer Research Grant Program. The contributions to these programs made by the Affiliate are in support of our Promise to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to find a cure. The Affiliate serves as an indirect service provider, fundraising and granting funds to organizations, agencies, and providers of breast health education, screening, treatment, and support in the identified service area. Komen Greater Cincinnati Affiliate encompasses 21 counties in three states (Kentucky, Indiana, and Ohio). This service area includes five counties in Kentucky: Boone, Campbell, Gallatin, Grant, and Kenton. There are three Indiana counties within the service area: Dearborn, Ohio, and Switzerland. And finally, 13 Ohio counties are within the service area: Adams, Brown, Butler, Clermont, Clinton, Darke, Greene, Hamilton, Highland, Miami, Montgomery, Preble, and Warren. Purpose of the 2011 Community Profile The purpose of this report is to guide the immediate and long-term priorities, objectives, and strategic activities of the Affiliate in its Promise to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to find a cure in the 21 county region of the Greater Cincinnati service area. This report provides a detailed account of the community s thoughts and knowledge on breast health, breast health services in the area, the community s accessibility to such services, and the survivors experience while engaged in these services. In addition, the data in the 2011 Community Profile report will begin to serve as a baseline for breast health services and conditions in the Greater Cincinnati area. Statistics and Demographic Review The Community Profile Team for the Affiliate organized the collection of data as a three-part process. The process consisted of collecting secondary data, quantitative data, and qualitative data. The secondary health data consisted of local, state, and federal data compiled from October 2010 through February The quantitative data was collected in the form of surveys available on Survey Monkey for local area breast cancer survivors, general community members (females and males), and breast health service providers. The qualitative data, collected 1

8 from breast health service providers, general community members and breast cancer survivors, included key informant interviews, focus groups, and Photovoice techniques. A list of references used for the secondary data analysis, demographic and other data included in this report is available at the end of the full 2011 Community Profile. Breast Cancer Impact in Service Area The regional incidence rate for the Affiliate service area is 124/100,000 which is consistent with the national rate of 124/100,000 (Surveillance Epidemiology and End Results (SEER), 2010, Thomson Reuters 2010). The 2010 incidence rates for both Ohio (123/100,000) and Kentucky (127/100,000) do not differ significantly from the regional or national incidence rates (SEER, 2010, Thomson Reuter 2010). Indiana has an estimated incidence rate of 117/100,000 for 2010, lower than the national rate of 124/100,000 (SEER, 2010, Thomson Reuters 2010). Of the counties in the Affiliate area, nine of the counties have an estimated incidence rate at or above the national rate (SEER, 2010, Thomson Reuters 2010). Thomson Reuters (2010) projects that by the year 2014, the incidence rate in all of the counties in the Affiliate service area will increase. Incidence rates appear to be higher in counties that have a larger number of screening resources available. An increase in incidence rates could indicate higher screening rates in the Affiliate area. However, it may be more informative to look at potential increases in early stage diagnoses (Stages I and II), illustrating an increase in early detection. In the Affiliate area, the majority of breast cancer cases are diagnosed at an early stage (SEER, 2010, Thomson Reuters 2010). This is consistent with national statistics, with the largest percentage of women diagnosed with localized breast cancer/early stage/stage I (SEER, 2010, Susan G. Komen for the Cure, 2011). More alarmingly is the stage of diagnosis differences between Caucasian and African American women within the Greater Cincinnati region (Thomson Reuters 2010). There are significant differences between African American and Caucasian and all other racial/ethnic minority women. Research shows that African American and Hispanic/Latina women diagnosed with breast cancer are less likely to receive an early diagnosis (Stage I) and are unfortunately more likely to receive a later stage diagnosis (Stage III or IV) (SEER, 2010, Susan G. Komen for the Cure, 2011, Thomson Reuters 2010). Approximately 36 percent of women in the Affiliate area reported that they had not received a mammogram within the past 12 months (Thomson Reuters 2010). Of women with the Affiliate area reporting no mammogram in the past 12 months, 13 of the counties are higher than the regional percentage (Thomson Reuters 2010).These 13 counties are all considered rural areas of the Affiliate area (U.S. Census Bureau, 2010). Unfortunately, a direct comparison cannot be made to national level statistics (e.g., Centers for Disease Control and Prevention) due to the fact that national data only captures women who reported No Mammogram in the Past Two Years. Mortality rates for the three states in the Affiliate area were each higher than the national mortality rate of 24/100,000 in both 2007 and 2010 (Cancer Control P.L.A.N.E.T, 2007, SEER, 2010, Thomson Reuters 2010). In addition, 14 counties within the Affiliate service area are above the national mortality rate of 24/100,000 (Thomson Reuters 2010). Identifying our Focus The counties in the Affiliate service area identified as rural appear to have a low concentration of service providers, higher unemployment rates, higher rates of uninsured females, increased percentage of resident living below the poverty level, higher breast cancer mortality rates, and a higher percentage of women who report no mammogram in the past 12 months (Cancer 2

9 Control P.L.A.N.E.T., 2007, SEER, 2010, Thomson Reuters 2010, U.S. Census Bureau, 2010). This is compatible with data showing that rural communities in the Affiliate service area appear to have decreased screening rates. Communities within the Affiliate service area with a higher median income and lower rate of uninsured women are more likely to have engaged in screening services and have higher rates of early diagnosis (Stage I or II). Research consistently shows that persons without health insurance are far less likely to engage in preventive screenings and follow-up care than persons with insurance (National Center for Health, 2011). The National Center for Health (2011) also found that racial and ethnic populations are less likely to have some form of insurance to support their health care efforts. These ethnic and racial populations also appear to be disproportionately impacted by later stage diagnosis and mortality rates. In the Affiliate area, both late stage diagnosis and mortality rates are higher for African American women. The full impact of these factors on the Hispanic/Latina populations in the Affiliate area is uncertain, due to large estimates of undocumented persons in this population (Hispanic Chamber Cincinnati USA, 2010). According to the U.S. Census Bureau (2010) and the data estimates from Thomson Reuters 2010, the majority of African American and Hispanic/Latina women reside in communities where breast health continuum of care services have a greater concentration. Despite apparent access to resources (unlike the rural counties), African American and Hispanic/Latina women in the Affiliate service area often appear to either neglect utilizing these resources, are unaware of the importance of these resources, or are accessing them at later stages of their disease. In general, the data-driven process of the Community Profile illustrated disparities in access to resources in rural communities and barriers that prevent African American and Hispanic/Latina women from engaging in the breast health continuum of care. As a result of this data review the Affiliate was able to identify target communities and populations selected for priority as identified in the 2011 Community Profile. The Affiliate identified the following rural communities of the service area: Adams (OH), Brown (OH), Clinton (OH), Darke (OH), Gallatin (KY), Grant (KY), Miami (OH), Ohio (IN), Preble (OH), and Switzerland (IN). This was primarily due to the low concentration of service providers, higher unemployment rates, higher rates of uninsured females, larger percentage of residents living below the poverty level, higher breast cancer mortality rates, and a high percentage of women who report no mammogram in the past 12 months. The Affiliate also has made it a priority to target breast health efforts among the African American and Hispanic/Latina populations in the service area. The focus on these target populations is largely due to the discrepancies in early screening and diagnosis of breast cancer, high mortality rates, and cultural barriers preventing breast health service engagement among the African American and Hispanic/Latina women in the Greater Cincinnati area. Health Systems Analysis As the 2011 Community Profile Team began to outline the continuum of care (education, screening/diagnostic, treatment, and support) for breast health services, factors began to emerge that were consistent with the secondary health data. This consistency specifically applied to the available resources and the impact on the Affiliate s rural areas and African American and Hispanic/Latina populations. When exploring the continuum of care for breast health services, it was discovered that education was the top service offered by providers within the Affiliate service area. Screening/diagnostic, treatment, and support services in the continuum of care were also offered by providers in the Affiliate service area, however the type of screening service (e.g., screening or diagnostic, on-site or within the community) varied dramatically. Overall, 3

10 screening and treatment services appeared to be more concentrated in the urban/suburban centers of the service area, with limited or no access in rural communities. There were also some areas within the Affiliate service area that had emerging breast health services, such as Darke and Greene counties in Ohio and Dearborn County in Indiana. There appears to be a lack of knowledge regarding the available support services that are provided for female breast cancer survivors and their families as they are going through or have completed treatment. Again, the majority of support services appear to be offered in locations central to the urban/suburban areas of the Affiliate service area. Post-treatment support services for breast cancer survivors did not appear to be available (with the exception of support groups). Key informants for the interview process were selected based on their particular knowledge of the systems of care, the cultural aspects, and their overall knowledge of their community. Key informants represented multiple agencies and organizations providing services along the continuum of care. There were five informants representing rural areas of the Affiliate service area and the Hispanic/Latina population. Key informants offered perspectives on services in the rural communities, their limitations, and the cultural and physical barriers that exist among women in their community. Of the key informants representing the rural communities, many of them identified that services in their area are limited or unavailable. However, even with the availability of services, providers felt as though women in their communities might not engage in preventive services due to cultural barriers, lack of knowledge, fear, or lack of financial means/insurance. To determine the general location and concentration of resources in the Affiliate service area, the 2011 Community Profile Team examined the 2009 Community Profile, the past survey provider contact list, the list of contacts developed from a provider meeting held prior to the submission of the 2009 Community Profile, and input from existing provider contacts in the community. A fairly comprehensive identification of providers was established as a result of this process. It became clear that area breast health resources are concentrated in the urban/suburban centers of the Affiliate area, leaving fewer options for or accessibility to, breast health services for women in rural communities. The exception is the breast health education and mobile screening services offering in rural communities provided by Affiliate funded Community Health Programs. The Provider Survey completed by 42 breast health services providers in the Affiliate service area again assisted in identifying the needs of the breast health services community and the need for service outreach to the rural communities. The results of the Provider Survey indicate a need for improved provider knowledge of the breast health services and continuum of care resources in the 21 County Affiliate service area. Breast Cancer Perspectives In order to get a richer and more accurate picture of the Affiliate service area the Community Profile Team conducted community-level surveys, focus groups, key informant interviews, and Photovoice as part of the data collection process. Overall findings of the general community member, the breast cancer survivor surveys, the community focus groups, key informant interviews, and the Photovoice project were consistent with the secondary health data and health system analyses findings that also identifies that cultural barriers, lack of knowledge, complacency about the importance of breast health, and financial resources often prevent women from accessing breast health services. The surveys also support the need for greater awareness of existing breast health continuum of care resources available in the Affiliate service area. The breast cancer survivor survey and the Photovoice process further illustrated the findings of the secondary health data and health systems analyses 4

11 supporting the need for better avenues to learn about support services and connect with services for breast cancer survivors and their families along the breast health continuum of care (e.g., perhaps through support services such as nurse navigation). Conclusions As a result of the data collected, the 2011 Community Profile Team was able to clearly identify two main target areas: rural communities and African American/Hispanic/Latina populations. These data assisted the Affiliate Board and staff in the development of specific objectives and strategic activities to be carried out in the next 3-5 years. The priorities reflect the identified target areas in addition to needs that emerged as part of the data collection process. Affiliate Priorities: Priority One: Improve Screening/Diagnostic Services offered to all women in the Affiliate area, with particular emphasis on the rural communities and the African American and Hispanic/Latina populations. Priority Two: Increase accessibility to breast health services by supporting and increasing Nurse Navigation/Transportation Resources available to women in the Affiliate service area. Priority Three: Engage communities by supporting and providing Education/Outreach Breast Health Services for all women in the Affiliate area, with particular emphasis on the rural communities and the African American/Hispanic/Latina populations Priority Four: Strengthen and grow Survivorship Resource Efforts in the Affiliate service area. Priority Five: Conserve existing funds and programs to establish Sustainability of the efforts supporting the Affiliate Promise. Action Plan A more detailed Affiliate Strategic Plan using these data was developed by the Board as part of their strategic processes in June This more detailed Affiliate priorities and strategic plan (including objectives and strategic activities) is available in the full 2011 Community Profile. Amy Weber, the 2011 Community Profile Team Leader, recently became a staff member of the Affiliate and is currently serving as the Community Health Programs Manager. Ms. Weber will oversee efforts of the Affiliate related to education; outreach, mission, advocacy, survivorship, and Affiliate funded Community Health Programs. Amy Wagner, hired in June 2011 as the Affiliate Development Director, is currently overseeing efforts related to development, fundraising, and communications of the Affiliate. These two positions, under the direction of Peggy Isenogle, the Executive Director, and the Affiliate Board of Directors will carry out the above listed priorities of the Greater Cincinnati Affiliate. The 2011 Community Profile Team will transition to the Education Committee for the Affiliate Board to address issues related to community health programs, education, and advocacy. The current Community Profile/Education committee will be organized and in place to address data comparison and collection for the 2013 Community Profile. 5

12 Introduction Ambassador Nancy G. Brinker, founding chair of Susan G. Komen for the Cure, promised her dying sister, Susan G. Komen, she would do everything in her power to end breast cancer forever. In 1982, that promise became Susan G. Komen for the Cure, which is the world s largest breast cancer organization and the largest source of nonprofit funds dedicated to the fight against breast cancer with more than $1.98 billion invested to date. For more information about Komen for the Cure, breast health or breast cancer visit or call GO KOMEN. Founded in 1997 as the Susan G. Komen for the Cure Greater Cincinnati Race for the Cure (RFTC), this Affiliate has grown from a RFTC event with 2,700 participants realizing an approximate $170,000 in revenue to a combined Race/Affiliate revenue of over $1.8M in FY2010. In the last 13 years, the Greater Cincinnati Affiliate of Susan G. Komen for the Cure has funded over $6.3M in local programs to address screening, education, and treatment of breast cancer. Additionally, we have contributed just over $2M toward the Susan G. Komen for the Cure Breast Cancer Research Grant Program. The In the last 13 years, the Greater Cincinnati Affiliate of Susan G. Komen for the Cure has funded over $6.3M in local programs to address screening, education, and treatment of breast cancer. contributions to these programs made by the Komen Greater Cincinnati Affiliate are in support of our Promise to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to find a cure. This Affiliate serves as an indirect service provider, fundraising and granting funds to organizations, agencies, and providers of breast health education, screening, treatment, and support in the identified service area. The Affiliate encompasses 21 counties in three states (Kentucky, Indiana, and Ohio) (See Figure 1). This service area includes five counties in Kentucky: Boone, Campbell, Gallatin, Grant, and Kenton. There are three Indiana counties within the service area: Dearborn, Ohio, and Switzerland. And finally, 13 Ohio counties are within the service area: Adams, Brown, Butler, Clermont, Clinton, Darke, Greene, Hamilton, Highland, Miami, Montgomery, Preble, and Warren. Figure 1. Greater Cincinnati Affiliate for Susan G. Komen for the Cure Service Area 6

13 Organizational Structure The Affiliate Board, responsible for carrying out the Promise and the priorities, currently consists of the following positions: President, Vice President, and Treasurer. The Affiliate staff members that engage the community to carry out the priorities and actions consist of two main areas: development and mission. Overseen by the Affiliate Executive Director, the development staff are primarily responsible for the fundraising, communication and marketing activities of the Affiliate. The mission/community health programs staff is responsible for carrying out objectives that include education, advocacy and outreach. Both of these areas complement each other in the tasks that support the Promise of the Affiliate (See Figure 2). Figure 2. Affiliate Organizational and Staffing Structure, 2011 Description of Service Area The Affiliate service area includes 21 counties: 13 southeastern counties in Ohio, five northern counties of Kentucky, and three southwestern Indiana counties (Refer to Figure 1). The Affiliate service area consists of 7,606 square miles of urban, suburban, and rural communities, including the two metropolitan cities of Cincinnati, Ohio and Dayton, Ohio (U.S. Census Bureau, 2010). The majority of the service area is primarily rural communities with approximately half of the counties having less than 50,000 residents (U.S. Census Bureau, 2010). In addition, these rural areas either travel to work 30 or more miles each day or work in the farming industry. The total population of the Affiliate service area is 3,121,998; with approximately 51 percent (1,600,402) being female (Thomson Reuters 2010.) The largest percentage of the population is under the age of 19 (27 percent), however the second largest age group appears to be the generation identified as the baby boomers with nearly 19 percent of the total Affiliate region falling between the ages of 50 and 64. However, with the exception of the 19 and younger group, each age category appears to be fairly evenly split (Figure 3). Little diversity in ethnicity or race is 7

14 seen in the Affiliate service area as the largest percentage of the population is Caucasian (nearly 83 percent) (Thomson Reuters 2010). Twelve percent of the Affiliate area identify themselves as African American, approximately two percent as Hispanic/Latino, and nearly two percent as Asian American (Figure 4) (Thomson Reuters 2010). The remaining ethnic/racial populations are less than one percent (Thomson 2010). The African American and Hispanic/Latino populations primarily reside in the suburban and urban counties of the Affiliate service area (e.g., Hamilton, Montgomery, Butler, Boone, Greene and Warren) (U.S. Census Bureau, 2010). Figure 3. Population Age, by percent (females & males), estimated Thomson Reuters 2010 Figure 4. Population Ethnicity/Race, by percent (females & males), estimated Thomson Reuters 2010 The Median Household Income in the Affiliate service area is $54,051 with approximately seven percent of all families in the region at or below the national poverty level of 14 percent (Thomson Reuters 2010, U.S. Census Bureau, 2010). Six of the counties in the service area have a larger percentage of persons below the national poverty level and at the state-level; Kentucky has a higher percentage of persons below the national poverty level at 17 percent (US Census Bureau, 2010). Indiana and Ohio each have a lower percentage of persons below the national poverty level at 13 percent each (U.S. Census Bureau, 2010). Nearly 14 percent of females aged are currently without insurance (n=136,085) (Thomson Reuters 2010). In the Affiliate service area, 13 counties are either at or above the national unemployment rate of 9.4 percent (Bureau of Labor Statistics, 2011). Purpose of the Report The purpose of this report is to guide the immediate and long-term priorities, objectives, and strategic activities of the Affiliate in its Promise to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to find a cure in the 21 county region of the Greater Cincinnati service area. This report provides a detailed account of the community s thoughts and knowledge on breast health, breast health services in the area, the community s accessibility to such services, and the survivors experience while engaged in these services. In addition, the data in the 2011 Community Profile report will begin to serve as a baseline for breast health services and conditions in the Greater Cincinnati area. 8

15 Breast Cancer Impact in Affiliate Service Area Methodology Overview of Data Sources and Limitations The data that were collected for the 2011 Community Profile consisted of local, state, and national data sources in the form of secondary health data (collected and compiled by a third party), surveys, and qualitative data conducted in the local area. References for data used in this report will be cited throughout this document and a complete list provided at the end of this report. This report represents various data either analyzed or collected from These references offer an overall picture of breast health and related issues in the Greater Cincinnati area, however limitations include: inability of Community Profile Team to adequately access and receive feedback from the Hispanic/Latino community in the Greater Cincinnati, limited contact and information from the Dayton metropolitan area (although this report does include additional information since the 2009 Community Profile), and, in some cases, lack of comparison of regional level data to the state and national level data (e.g., women reporting no mammogram in the past 12 months). Overview of the Affiliate service area Mortality rates. Mortality rates for each of the three states in the Affiliate area were higher than the national mortality rate of 24/100,000 in both 2007 and 2010 (See Figure 5) (Cancer Control P.L.A.N.E.T, 2007, Surveillance Epidemiology and End Results (SEER), 2010, Thomson Reuters 2010). In addition, 14 counties within the Affiliate service area are above the national mortality rate of 24/100,000 (See Figure 6) rate, women per 100, rate, women per 100,000 Figure 5. National, State Mortality Rates (Thomson Reuters data estimated) Cancer Control P.L.A.N.E.T, 2007; SEER, 2010, Thomson Reuters 2010 Figure 6. County Mortality Rates, estimated Thomson Reuters

16 Stage Diagnosis. In the Affiliate area, the majority of breast cancer cases are diagnosed at an early stage (Figure 7) (SEER, 2010, Thomson Reuters 2010). This is consistent with national statistics, with the largest percentage of women diagnosed with localized breast cancer/early stage/ Stage I (SEER, 2010, Susan G. Komen for the Cure, 2011). More alarmingly is the stage of diagnosis differences between Caucasian and African American women within the Greater Cincinnati region (Figures 8-11) (Thomson Reuters 2010). There are significant differences between African American and Caucasian and all other racial/ethnic minority women. Figures 8-11 illustrate that African American women diagnosed with breast cancer are less likely to receive an early diagnosis (Stage I) and nearly twice as likely to receive a later stage diagnosis (Stage III or IV) (Thomson Reuters 2010). Stage I: Figure 7. Stage of Diagnosis Regional & National Rates (Thomson Reuters data estimated) SEER, 2010; Thomson Reuters 2010 Stage II: Stage III: Stage IV: Figures Stage of Diagnosis, by County and Ethnicity/Race, estimated Thomson Reuters

17 Although these data on late stage diagnoses among African Americans are troubling mortality rates do appear to be lower for African American females that appear to reside in resource rich urban areas of the Affiliate (e.g., Hamilton and Montgomery counties) (Thomson Reuters 2010). Coincidentally, as resources in the Affiliate area become more sparse, such as in the more rural and isolated counties, African American mortality rates increase and surpass mortality rates of Caucasians (Thomson Reuters 2010). Incidence rates The regional incidence rate for the Affiliate service area is 124/100,000 which is consistent with the national rate of 124/100,000 (SEER, 2010, Thomson Reuters 2010) (Figure 12). The 2010 incidence rates for both Ohio (123/100,000) and Kentucky (127/100,000) do not significantly differ from the regional or national incidence (Figure 12) (SEER, 2010, Thomson Reuter 2010). Indiana has an estimated incidence rate of 117/100,000 for 2010, lower than the national rate of 124/100,000 (SEER, 2010, Thomson Reuters 2010). Of the counties in the Affiliate area, nine of the counties have an estimated incidence rate at or above the national rate (SEER, 2010, Thomson Reuters 2010) (Figure 13). Thomson Reuters (2010) projects that by the year 2014, the incidence rate in all of the counties in the Affiliate service area will increase (Figure 13). Incidence rates appear to be higher in counties that have a larger number of screening resources available. An increase in incidence rates could indicate higher screening rates in the Affiliate area. However, it may be more informative to look at potential increases in early stage diagnoses (Stages I and II), illustrating an increase in early detection. Figure 13. Incidence Rates, 2007 & 2010 (Thomson Reuters data estimated) Cancer Control P.L.A.N.E.T, 2007; SEER, 2010; Thomson Reuters 2010 Figure Actual and 2014 Projected Incidence Rates (per 100,000) (Thomson Reuters data estimated) Thomson Reuters

18 Approximately 36 percent of women in the Affiliate area reported that they had not received a mammogram within the past 12 months (Thomson Reuters 2010). Of women with the Affiliate area reporting no mammogram in the past 12 months, 13 of the counties are higher than the regional percentage (See Figure 14) (Thomson Reuters 2010).These 13 counties are all considered rural areas of the Affiliate area (U.S. Census Bureau, 2010). Unfortunately, a direct comparison cannot be made to national level statistics (e.g., Centers for Disease Control and Prevention (CDC)) due to the fact that national data only captures women who reported No Mammogram in the Past Two Years. Regional Rate=36.1 percent Figure 14. Women reporting No Mammogram in the Past 12 Months, estimated Thomson Reuters 2010 Of the reasons given by women in the regional area not receiving a mammogram, nearly 10 percent of women stated they did not have time and almost six percent of women did not get a mammogram due to personal choice (Thomson Reuters 2010). This speculation about not receiving a mammogram is consistent with the regional surveys collected regarding breast health (See Breast Cancer Perspectives in Target Communities section below). Conclusion Although the incidence rates at the regional and state levels do not appear to be problematic as they are consistent with the national rate, nine of the counties in the Affiliate service area have an estimated incidence rate at or above the national incidence rate (Figures 12 and 13) (SEER, 2010, Thomson Reuters 2010). In addition, it is projected that incidence rates in all of the individual counties in the Affiliate service area will increase by the year 2014 (Thomson Reuters, 2010). Incidence rates appear to be higher in counties that have a larger number of screening resources available. An increase in incidence rates could also indicate higher screening rates in the Affiliate area. It will be more telling to look at potential increases in early stage diagnoses (Stages I and II), illustrating an increase in early detection. Mortality rates for each of the three states in the Affiliate area were higher than the national mortality rate of 24/100,000 in both 2007 and 2010 (See Figure 5) (Cancer Control P.L.A.N.E.T, 2007, SEER, 2010, Thomson Reuters 2010). In addition, 14 counties within the Affiliate service area are above the national mortality rate of 24/100,000 (See Figure 6). 12

19 Consistent with national data, women diagnosed with breast cancer in the Affiliate area are more likely to be diagnosed at an early stage (either Stage 1 or Stage 2) (Figure 7) (SEER, 2010, Thomson Reuters 2010). However, African American women in the region (and at the national level) are far less likely to be diagnosed at an earlier stage and are nearly twice as likely to experience a later stage diagnosis (either Stage III or Stage IV) (Figures 8-11) (Thomson Reuters 2010). Table 1. Regional areas of concern Uninsured females Incidence rate (regional) Women who reported no mammogram in past 12 months Female breast cancer mortality rates Percent of women diagnosed at Stage I Percent of women diagnosed at Stage II Percent of women diagnosed at Stage III Percent of women diagnosed at Stage IV 14 percent 124/100,000 (Consistent with the national rate of 124/100,000) 36 percent Indiana- 27/100,000 Kentucky- 27/100,000 Ohio- 28/100, percent overall Caucasian- 65 percent 28 percent overall Caucasian- 27 percent Four percent overall Caucasianthree percent Five percent overall Caucasian- four percent 14 counties in the Affiliate service area have a higher mortality rate than the national rate African American- 55 percent African American- 31 percent African American- six percent African American- eight percent (All higher than national rate of 24/100,000) Thomson Reuters 2010, estimated Communities of Interest As can be seen in figures above, the counties identified as rural appear to have higher breast cancer mortality rates (Figure 6), lower incidence rates (perhaps related to low screening rates) (Figure 13), and a high percentage of women who report no mammogram in the past 12 months (Figure 14) (Cancer Control P.L.A.N.E.T, 2007; SEER, 2010; Thomson Reuters 2010). The rural communities that have been identified as communities of interest are the following 10 counties: Adams (OH), Brown (OH), Clinton (OH), Darke (OH), Gallatin (KY), Grant (KY), Miami (OH), Ohio (IN), Preble (OH), and Switzerland (IN). The data also estimates lower percentages of early stage diagnosis and dramatically higher percentages of late stage breast cancer diagnosis among African American women (Figures 8-11) (Thomson Reuters 2010). The largest percentages of African American women reside in: Hamilton, The largest percentages of women over 40 who report not having had a mammogram in the past 12 months, reside in the rural communities of the Affiliate service area. Montgomery, and Butler counties (Figure 15) (Thomson Reuters 2010). The largest percentage of Hispanic/Latina women reside in: Boone (three percent), Butler (two percent), Greene (two percent), and Montgomery (one percent) counties (Figure 16) (Thomson Reuters 2010). This illustrates that the majority of African American and Hispanic/Latina women appear to reside in high-resource breast health communities (perhaps, with the exception of 13

20 Hispanic/Latina migrant workers residing in rural farming communities). Figure 15. African American Women, by county (Top six counties) Figure 16. Hispanic/Latina Women, by county (Top seven counties) Thomson Reuters 2010, U.S. Census Bureau, 2010 Thomson Reuters 2010, U.S. Census Bureau, 2010 Target Populations (Rural Communities) Women residing in rural communities, regardless of ethnicity or race, are less likely to access preventive screening services. Issues identified through key informants interviews and focus groups with these populations found a number of reasons for why access was difficult (See Health Systems Analysis of Target Communities and Breast Cancer Perspectives in the Target Communities sections below for additional information). According to the U.S. Census Bureau (2010), persons residing in rural communities of the Affiliate service area travel approximately 30 minutes (each way) for their employment and perhaps to access resources. To further illustrate the needs identified for rural communities, the communities of interest (by county) will be outlined below. Adams County, Ohio. The total population of Adams County, OH is 31,562, with 51 percent (16,093) being female. Ninety percent of all of the females within the county identify themselves as Caucasian, showing very little racial/ethnic diversity. The percent of uninsured females, ages within Adams County is 23 percent, representing the highest number of uninsured women within the Affiliate service area. The unemployment rates for the county in December 2010 were nearly 14 percent, higher than both the state of Ohio (9.6 percent) and the national (9.4 percent) unemployment rates. Similar to these data on uninsured women and unemployment rates, the percentage of persons living below the poverty level is nearly 22 percent, higher than the state and national (U.S. Census Bureau, 2010). In fact, this county has the highest percentage of persons living below the poverty level. Although the incidence rate (new cases) for this county was 90/100,000, lower than both the national, state, and regional incidence rates for breast cancer. The percent of women reporting that they had no mammogram in the past 12 months (43 percent) is higher than the regional rate (36 percent) and in fact the highest in the Affiliate service area (Table 2). Table 2. Adams County Areas of Concern Uninsured females Unemployment rate Incidence rate Women who reported no mammogram in past 12 months Female breast cancer mortality rates Percent of women diagnosed at Stage I/II Percent of women diagnosed at Stage III/IV 23 percent 13.7 percent 90/100, percent 22/100, percent 7.5 percent Thomson Reuters 2010 (estimated), 14

21 Brown County, Ohio. The total population of Brown County, OH is 39,128, with nearly 51 percent (19,873) being female. Ninety-seven percent of the within the county identify themselves as Caucasian, showing very little racial/ethnic diversity. The percent of uninsured females, ages within Brown County is 14 percent and the unemployment rates for the county in December 2010 were11 percent, higher than both the state of Ohio (9.6 percent) and the national (9.4 percent) unemployment rates. Similar to these data on uninsured women and unemployment rates, the percentage of persons living below the poverty level is 13 percent, consistent with both the state, national percentages (U.S. Census Bureau, 2010). Although the incidence rate of breast cancer in Brown County (106/100,000) was lower than both the national, state, and regional incidence rates for breast cancer, the percent of women reporting that they had no mammogram in the past 12 months (nearly 40 percent) is higher than the regional rate (36 percent) (Table 3). Table 3. Brown County Areas of Concern Uninsured females Unemployment rate Incidence rate Women who reported no mammogram in past 12 months Female breast cancer mortality rates Percent of women diagnosed at Stage I/II Percent of women diagnosed at Stage III/IV 14 percent 14 percent 106/100, percent 25/100, percent 7.5 percent Thomson Reuters 2010 (estimated), Clinton County, Ohio. The total population of Clinton County, OH is 38,927, with nearly 51 percent (24,798) being female. Ninety-seven percent of all of the females within the county identify themselves as Caucasian, showing very little racial/ethnic diversity. The percent of uninsured females, ages within Clinton County is nearly 12 percent and the unemployment rates for the county in December 2010 were 15 percent, higher than both the state of Ohio (9.6 percent) and the national (9.4 percent) unemployment rates and highest for the regional service area. (As a side note, it is thought that the progressive lay-offs and eventual closing of a large employer in this county dramatically affected the uninsured and the unemployment rates in this and surrounding counties). Similar to these data on uninsured women and unemployment rates, the percentage of persons living below the poverty level is nearly 11 percent, which is lower than the state and national percentages (U.S. Census Bureau, 2010). Although the incidence rate of breast cancer in Clinton County (112/100,000) was lower than both the national, state, and regional incidence rates, the percent of women reporting that they had no mammogram in the past 12 months (nearly 40 percent) is higher than the regional rate (36 percent) (Table 4). Table 4. Clinton County Areas of Concern Uninsured females Unemployment rate Incidence rate Women who reported no mammogram in past 12 months Female breast cancer mortality rates Percent of women diagnosed at Stage I/II Percent of women diagnosed at Stage III/IV 12 percent 15 percent 112/100, percent 21/100, percent 7.5 percent Thomson Reuters 2010 (estimated), 15

22 Darke County, Ohio. The total population of Darke County, OH is 52,452, with nearly 51 percent (26,660) being female. Ninety-nine percent of all of the females within the county identify themselves as Caucasian, showing very little racial/ethnic diversity. The percent of uninsured females, ages within Darke County is 12 percent and the unemployment rates for the county in December 2010 were nearly 10 percent, slightly higher than both the state of Ohio (9.6 percent) and the national (9.4 percent) unemployment rates. Similar to these data on uninsured women and unemployment rates, the percentage of persons living below the poverty level is nearly ten percent, which is lower than both the state and national percentages (U.S. Census Bureau, 2010). Although the incidence rate of breast cancer in Darke County (121/100,000) was consistent with the national rate and lower than both the state and regional incidence rates for breast cancer, the percent of women reporting that they had no mammogram in the past 12 months (nearly 40 percent) is higher than the regional rate (36 percent). In addition, the female breast cancer mortality rate for this county is highest for our entire regional service area (nearly 37/100,000) despite a higher percentage of women being diagnosed at Stage I (nearly 66 percent) (Table 5) Community Profile Team members conducted a key informant interview in this county with medical professionals at the local healthcare provider in this county and discovered that in the past 1½ years, the hospital has opened a new cancer center and has dramatically increased their preventive and diagnostic screenings for breast cancer. After this conversation, we believe that this could have had a dramatic impact on the percentage of women receiving a Stage I or early diagnosis. It is anticipated that the Affiliate and the medical professionals in this county will continue to see an increase in Stage I diagnosis and a decrease in mortality rates as screening and detection in this county improves. Table 5. Darke County Areas of Concern Uninsured females Unemployment rate Incidence rate Women who reported no mammogram in past 12 months Female breast cancer mortality rates Percent of women diagnosed at Stage I/II Percent of women diagnosed at Stage III/IV 12 percent 9.9 percent 121/100, percent 37/100, percent 7.6 percent Thomson Reuters 2010 (estimated), Gallatin County, Kentucky. The total population of Gallatin County, KY is 7,240, with 50 percent (3,641) being female. Ninety-eight percent of all of the females within the county identify themselves as Caucasian, showing very little racial/ethnic diversity. The percent of uninsured females, ages within Gallatin County is 17 percent and the unemployment rates for the county in December 2010 were 10 percent, consistent with the state of Kentucky (10.3 percent) and higher than the national (9.4 percent) unemployment rates. Similar to these data on uninsured women and unemployment rates, the percentage of persons living below the poverty level is 17 percent, which is consistent with the state and higher than the national percentages (U.S. Census Bureau, 2010). The incidence rate of breast cancer in Gallatin County is 123/100,000, higher than the national rate, consistent with the regional rate, and lower than the state rate. In addition, the percent of women reporting that they had no mammogram in the past 12 months (nearly 38 percent) is higher than the regional rate (36 percent) (Table 6). 16

23 Table 6. Gallatin County Areas of Concern Uninsured females Unemployment rate Incidence rate Women who reported no mammogram in past 12 months Female breast cancer mortality rates Percent of women diagnosed at Stage I/II Percent of women diagnosed at Stage III/IV 17 percent 10 percent 123/100, percent 22/100, percent 7.5 percent Thomson Reuters 2010 (estimated), Grant County, Kentucky. The total population of Grant County, KY is 28,310, with 50 percent (14,272) being female. Ninety-six percent of all of the females within the county identify themselves as Caucasian, showing very little racial/ethnic diversity. The percent of uninsured females, ages within Grant County is nearly 12 percent and the unemployment rates for the county in December 2010 were 11 percent, higher than both the state of Kentucky (10.3 percent) and the national (9.4 percent) unemployment rates. Similar to these data on uninsured women and unemployment rates, the percentage of persons living below the poverty level is 14 percent, which is lower than both the state and national percentages (U.S. Census Bureau, 2010). The incidence rate of breast cancer in Grant County is 109/100,000, lower than the regional, state, and national incidence rates. In addition, the percent of women reporting that they had no mammogram in the past 12 months (nearly 40 percent) is higher than the regional rate (36 percent). The mortality rate for women diagnosed with breast cancer is nearly 27/100,000, higher than both the state and the national mortality rates (Table 7). Table 7. Grant County Areas of Concern Uninsured females Unemployment rate Incidence rate Women who reported no mammogram in past 12 months Female breast cancer mortality rates Percent of women diagnosed at Stage I/II Percent of women diagnosed at Stage III/IV 12 percent 11 percent 109/100, percent 27/100, percent 7.4 percent Thomson Reuters 2010 (estimated), Highland County, Ohio. The total population of Highland County, OH is 42,061, with nearly 51 percent (21,487) being female. Nearly 98 percent of all of the females within the county identify themselves as Caucasian, showing very little racial/ethnic diversity. The percent of uninsured females, ages within Highland County is 15 percent and the unemployment rates for the county in December 2010 were nearly 14 percent, much higher than both the state of Ohio (9.6 percent) and the national (9.4 percent) unemployment rates. Similar to these data on uninsured women and unemployment rates, the percentage of persons living below the poverty level is nearly 13 percent, which is consistent with both the state and national percentages (U.S. Census Bureau, 2010). Although the incidence rate of breast cancer in Highland county (97/100,000) was consistent with the national rate and lower than both the state, and regional incidence rates for breast cancer, the percent of women reporting that they had no mammogram in the past 12 months (nearly 40 percent) is higher than the regional rate (36 percent). The female breast 17

24 cancer mortality rate for this county (24 percent) is consistent with the national rate (24 percent) and lower than the state rate (27 percent) (Table 8). Table 8. Highland County Areas of Concern Uninsured females Unemployment rate Incidence rate Women who reported no mammogram in past 12 months Female breast cancer mortality rates Percent of women diagnosed at Stage I/II Percent of women diagnosed at Stage III/IV 15 percent 14 percent 97/100, percent 24/100, percent 7.5 percent Thomson Reuters 2010 (estimated), Miami County, Ohio. The total population of Miami County, OH is 99,153, with nearly 51 percent (50,407) being female. Nearly 96 percent of all of the females within the county identify themselves as Caucasian, showing very little racial/ethnic diversity. The percent of uninsured females, ages within Miami County is 10 percent and the unemployment rates for the county in December 2010 were 9.6 percent, nearly consistent with both the state of Ohio (9.6 percent) and the national (9.4 percent) unemployment rates. Similar to these data on uninsured women and unemployment rates, the percentage of persons living below the poverty level is nearly 8 percent, which is lower than both the state and national percentages (U.S. Census Bureau, 2010). The incidence rate (new cases) of breast cancer in this county was higher than the regional, state, and national rates at 130/100,000. Furthermore, the percent of women reporting that they had no mammogram in the past 12 months (nearly 37 percent) is only slightly higher than the regional rate (36 percent). In addition, the female breast cancer mortality rate (25/100,000) for this county is lower than the state rate and higher than the national rate (Table 9). Table 9. Miami County Areas of Concern Uninsured females Unemployment rate Incidence rate Women who reported no mammogram in past 12 months Female breast cancer mortality rates Percent of women diagnosed at Stage I/II Percent of women diagnosed at Stage III/IV 10 percent 9.6 percent 130/100, percent 25/100, percent 7.6 percent Thomson Reuters 2010 (estimated), Ohio County, Indiana. The total population of Ohio County, IN is 4,878, with nearly 51 percent (2,453) being females. Approximately 99 percent of all of the females within the county identify themselves as Caucasian, showing very little racial/ethnic diversity. The percent of uninsured females, ages within Ohio County is nearly 11 percent and the unemployment rates for the county in December 2010 were 9 percent, slightly lower than both the state of Indiana (9.5 percent) and the national (9.4 percent) unemployment rates. Similar to these data on uninsured women and unemployment rates, the percentage of persons living below the poverty level is 9 percent, which is lower than both the state and national percentages (U.S. Census Bureau, 2010). The incidence rate of breast cancer in Ohio County (115/100,000) is lower than the regional and the state incidence rates, but higher than the national rates. Furthermore, the percent of women reporting that they had no mammogram in the past 12 months (nearly 40 percent) is higher than the 18

25 regional rate (36 percent). In addition, the female breast cancer mortality rate (nearly 29/100,000) for this county is higher than both the state and the national rates (Table 10). Table 10. Ohio County Areas of Concern Uninsured females Unemployment rate Incidence rate Women who reported no mammogram in past 12 months Female breast cancer mortality rates Percent of women diagnosed at Stage I/II Percent of women diagnosed at Stage III/IV 11 percent 9 percent 115/100, percent 29/100, percent 7.5 percent Thomson Reuters 2010 (estimated), Preble County, Ohio. The total population of Preble County, OH is 41,543, with nearly 51 percent (20,945) being female. Nearly 99 percent of all of the females within the county identify themselves as Caucasian, showing very little racial/ethnic diversity. The percent of uninsured females, ages within Preble County is nearly10 percent and the unemployment rates for the county in December 2010 were 10.3 percent, higher than both the state of Ohio (9.6 percent) and the national (9.4 percent) unemployment rates. Similar to these data on uninsured women and unemployment rates, the percentage of persons living below the poverty level is 8 percent, which is lower than both the state and national percentages (U.S. Census Bureau, 2010). The incidence rate of breast cancer in Preble County (116/100,000) is lower than the regional, state, and national rates. The percent of women reporting that they had no mammogram in the past 12 months (nearly 38 percent) is only slightly higher than the regional rate (36 percent). In addition, the female breast cancer mortality rate (26/100,000) for this county is lower than the state rate and only slightly higher than the national rate (Table 11). Table 11. Preble County Areas of Concern Uninsured females Unemployment rate Incidence rate Women who reported no mammogram in past 12 months Female breast cancer mortality rates Percent of women diagnosed at Stage I/II Percent of women diagnosed at Stage III/IV 10 percent 10 percent 116/100, percent 26/100, percent 7.5 percent Thomson Reuters 2010 (estimated), Switzerland County, Indiana. The total population of Switzerland County, IN is 8,572, with 50 percent (4,272) being female. Approximately 99 percent of all of the females within the county identify themselves as Caucasian, showing very little racial/ethnic diversity. The percent of uninsured females, ages within Switzerland County is nearly 18 percent (third highest in the region), however the unemployment rates for the county in December 2010 were nearly 7 percent, quite a bit lower than both the state of Indiana (9.5 percent) and the national (9.4 percent) unemployment rates. Similar to these data on uninsured women and unemployment rates, the percentage of persons living below the poverty level is 16 percent, which is higher than both the state and national percentages (U.S. Census Bureau, 2010). The incidence rate of breast cancer in Switzerland County (109/100,000) was lower than the regional, state, and national rates. The percent of women reporting that they had no mammogram in the past 12 months (41 percent) is higher 19

26 than the regional percentage (36 percent). In addition, the female breast cancer mortality rate (nearly 26/100,000) for this county is lower than the state rate and higher than the national rate (Table 12). Table 12. Switzerland County Areas of Concern Uninsured females Unemployment rate Incidence rate Women who reported no mammogram in past 12 months Female breast cancer mortality rates Percent of women diagnosed at Stage I/II Percent of women diagnosed at Stage III/IV 18 percent 7 percent 109/100, percent 26/100, percent 7.5 percent Thomson Reuters 2010 (estimated), Target Populations Although the Affiliate region lacks significant diversity in many of its outlying areas, problematic issues of awareness and screening still exist among ethnic and racial groups in the suburban and urban areas of the Affiliate. Issues of awareness and screening that arise with both the African American and the Hispanic/Latina populations are further explained in the Breast Cancer Perspectives in Target Communities section of this report. However, communities with the highest concentrations of African American and Hispanic/Latina were also the target of this data exploration. According to the PEW Hispanic Center (2011) and the National Center for Health Statistics (2011) both African Americans and Hispanic populations are more likely to be uninsured than Caucasian populations and data consistently shows that persons without health insurance are far less likely to engage in preventive screenings and follow-up care (National Center for Health Statistics, 2011). This could offer one explanation of the discrepancy between Caucasians and ethnic/racial minorities at both the national and the regional level when it comes to stage of diagnosis. The largest percentages of African American women reside in: Hamilton, Montgomery, and Butler counties (See Figure 15 above) (Thomson Reuters 2010). The largest percentage of Hispanic/Latina women reside in: Boone (three percent), Butler (two percent), Greene (two percent), and Montgomery (one percent) counties (See Figure 16 above) (Thomson Reuters 2010). Additionally, as noted previously in this report (See Figures 8-11 above) African American women in the Affiliate area are far less likely to be diagnosed at an When compared to Caucasian and all other racial and ethnic minority women, African American women in the Affiliate area are nearly twice as likely to be diagnosed at a later stage of breast cancer (either Stage III or IV). early stage of breast cancer (Stage I) and nearly twice as likely to be diagnosed at a later stage of breast cancer (either Stage III or IV) (Thomson Reuters 2010). This may indicate a lack of preventive screening among this population. A focus group conducted with this population supports this conclusion and is discussed below in the Breast Cancer Perspectives in Target Communities section of this report. The 2011 Community Profile Team identified an issue with the actual reported number of the Hispanic/Latinos identified in this report: the U.S. Census Bureau estimates this population by county according to documented or reported populations. The PEW Hispanic Center estimated 20

27 that there were nearly 11.2 million undocumented Hispanic/Latino immigrants in the United States in 2010 representing nearly twice the U.S. Census Bureau estimates (PEW Hispanic Center, 2011). The U.S. Census Bureau estimates that the Hispanic/Latina population in the Greater Cincinnati area is quite low. However the Hispanic Chamber Cincinnati USA (2010) estimates that the number is approximately double that estimate. The Hispanic Chamber Cincinnati USA (2010) estimates the number of undocumented Hispanic/Latinos working in the Greater Cincinnati areas in manual labor, factory, or farming positions. To strengthen this report, the breast health needs of this population were gathered in conversations with staff of the YWCA of Greater Cincinnati (See Breast Cancer Perspectives in Target Communities section below). Health Systems Analysis of Target Communities Overview of Continuum of Care To determine the impact of the breast health services in the Affiliate area, the 2011 Community Profile Team decided to carry out four main tasks: (1) Identify continuum of care for breast health services and specific details and issues related to that continuum in the Affiliate area; (2) Create a simple map of service providers, mammography site locations, and Affiliate funded Community Health Programs for FY2011; (3) Conduct a survey of area breast health service providers through Survey Monkey regarding awareness and comprehensive nature of breast health services in the area; and (4) Engage in interviews with key informants about breast health services provided in the Affiliate service area The continuum of care for female breast health is commonly referred to as the process of education, screening, treatment and support services that women have access to or barriers from. The 2011 Community Profile Team identified the continuum of care for breast health services in the Affiliate area (See Figure 17). Figure 17. Breast Health Continuum of Care, Greater Cincinnati Affiliate 21

28 Education According to the Provider Survey conducted for this Community Profile approximately 76 percent of providers completing the survey (n=29) reported that they provided education services. Education and awareness services are the most frequently offered service type in the Affiliate region, with multiple providers (including the Affiliate) providing Breast Self Awareness (BSA) presentations and materials in the form of health fairs, brief educational sessions, or other avenues while marketing services. Of the educational programs provided, printed materials, rather than educational sessions, have the furthest reach. Printed materials extend to outlying or rural counties while educational sessions are more centralized to the urban and suburban population centers. The Affiliate also provides introductory breast health educational sessions for businesses, organizations, and community groups in order to increase awareness about breast health and cancer. Also available in the Affiliate service area is an educational program addressing hereditary and genetic risk of breast cancer. This program, through both Cincinnati Children s Hospital Medical Center (CCHMC) and St. Elizabeth Healthcare, increases awareness of the importance of family history and inherited risk factors related to breast cancer risk. This initiative has implemented informational sessions to inform families at-risk for BRCA-1 and BRCA-2 genetic mutations about the available cancer genetic services, the implications of hereditary breast cancer on cancer risk, the specifics of genetic testing and the available risk management options. As a result of the Affiliate funded Community Health Programs in FY2011, the Affiliate estimates that over 25,000 community members in the Greater Cincinnati service area received BSA or other educational/informational programs/materials. With the implementation of Affiliate funded Community Health Programs in FY2012 and hiring a full time staff member responsible for mission/education, the Affiliate anticipates that the impact of information and educational efforts will increase significantly prior to the submission of the 2013 Community Profile. Screening/Diagnosis Of the providers completing the Provider Survey for this Community Profile nearly 58 percent reported that they provided screening and diagnostic services. Screening resources vary across the area and are often defined in different ways. For example, clinical breast exams (CBE) are typically offered by area obstetricians/gynecologists, but this system relies on women scheduling and attending their annual appointment and appears to be more likely to occur if women are insured. Mammography services also vary across the Affiliate service area with the majority of services concentrated in or near the urban and suburban centers. Mammography van services within the Affiliate service area have had great success in outreach to rural areas of Kentucky, Indiana, and southwest Ohio. The Affiliate continues to explore additional and complementary programs to assist mobile mammography screening in the Affiliate service area. Upon review of the Breast and Cervical Cancer and Early Detection Program (BCCEDP) funds, the 2011 Community Profile Team was able to determine that the funds are utilized differently within the three states within the Affiliate service area. The parameters for how women can access BCCEDP funds in the Affiliate area vary along the continuum of care, dependent on state of residence. Along with the growing number of women in the Affiliate service area that are unemployed, uninsured, or underinsured, the projected budget cuts to the BCCEDP will negatively impact all states in the Affiliate service area. 22

29 Ohio Breast and Cervical Cancer Project (BCCP) In Ohio, the state has opted into the most restrictive requirements for accessing treatment. This means that women must be enrolled in the BCCP Medicaid program prior to the screening mammogram in order to receive any additional services. If women are screened through other means and/or where a provider has not contracted with the BCCP Medicaid program, then women are determined ineligible to enroll in the program. The majority of low- or no-income women screened using BCCP funds in Ohio from were screened at the University of Cincinnati, Barrett Cancer Center and the Premier Community Health locations, with 8,577 and 5,780 screenings during that time period, respectively (Ohio BCCP, 2010). The majority of women screened in Ohio s BCCP were residents of Hamilton, Montgomery, and Butler, three of the large urban/suburban centers in the Affiliate service area (Ohio BCCP, 2010). Kentucky Women s Cancer Screening Program (KWCSP) The state of Kentucky has chosen the moderately restrictive criteria in the providing breast health screening, diagnostic, and treatment services for women. In Kentucky the BCCP dollars are used for screening and treatment for women ages who also meet additional income qualifications. This program appears to be very comprehensive and reports high success in increasing screening and reducing mortality rates in women s breast cancer in Kentucky. The reported numbers of women in the Affiliate service area (Northern Kentucky) that have accessed or been eligible for and used this funding option is very low (KWCSP, 2009).The KWCSP (2009) reports that the Northern Kentucky Area Development District (includes Boone, Campbell, Gallatin, Grant, and Kenton counties) has the second lowest numbers of screening mammograms performed in the state of Kentucky using BCCP funds. This could imply that a large majority of women that qualify for the BCCP-covered services are unaware of the existence of these services. Indiana State Department of Health The state of Indiana has selected the least restrictive program in the providing breast health screening, diagnostic, and treatment services for women. By recently becoming an Option 3 state, BCCP funds became accessible to women for breast cancer diagnostics and treatment from the BCCP Medicaid program regardless of where they were initially screened. The Indiana BCCP provides screening mammograms and treatment for women ages who meet additional income qualifications. In the state of Indiana, this program is provided through the Indiana As a result of the Affiliate funded Community Health Programs in FY2011, the Affiliate estimates that approximately 5,000 women in the Affiliate service have received both mammograms (screening and diagnostic) and treatment services. Department of Health and through local area health departments. The Indiana BCCP screens an estimated 5,000 to 7,000 women annually. It is somewhat unclear how many of these women fall within the three counties of the Affiliate service area (Indiana State Department of Health, 2006). The following have been identified by service area providers as grant and foundation programs that cover the cost of education, screening, diagnostic services, treatment, and support for 23

30 women in the community: American Cancer Society, AVON Foundation, Bricks Along the Journey, Indiana Breast Cancer Awareness Trust, National Breast Cancer Coalition (NBCC), Southern Ohio Women s Cancer Project, and the Greater Cincinnati Affiliate of Susan G. Komen for the Cure. As a result of the Affiliate funded Community Health Programs in FY2011, the Affiliate estimates that approximately 5,000 women in the Affiliate service area received both mammogram (screening and diagnostic) and treatment services. The Affiliate anticipates that the number of women receiving no-cost screening and diagnostic mammograms will increase as a result of the growth in Affiliate funded Community Health Programs in FY2012 and six new screening and diagnostic mammography projects. A Safety Net program for screening diagnostics assists women in the Affiliate service area that are in need follow-up care. These women would not be able to cover the cost of these services through any other means. For women that may have fallen through the gaps in the current system of care, perhaps to missed enrollment in BCCP funds or being un- or under- insured, this option provides solutions for follow-up services such as diagnostic mammograms and ultrasounds. Surveys and focus groups were conducted in the communities and among the populations of interest (see detailed account of these data processes below in the Breast Cancer Perspectives in Target Communities section). Community members completing the surveys and also those participating in focus groups identified lack of knowledge, fear of breast cancer/screening process and lack of financial resources/insurance as the primary barriers to accessing screening services. Treatment Fewer treatment services exist in the Affiliate service area than education and screening services. According to the Provider Survey conducted for this Community Profile, approximately 37 percent (n=14) offer breast cancer treatment services. Treatment services (e.g., surgical services, chemotherapy services, and/or radiation services) appear to be concentrated in the urban/suburban centers of the service area. However, there are some service providers that are located in more communities considered to be rural in the Affiliate service area and offer all or some breast cancer treatment services. These counties have been identified as Adams (OH), Brown (OH),Darke (OH), Dearborn (IN), Grant (KY), and Greene (OH). Major issues regarding treatment were identified during focus groups and key informant interviews conducted in these counties. These issues included fear of everyone knowing I was undergoing treatment/my business if I went to a local/small provider, fear that I would not be getting the best care, provider not part of my insurance group/provider network, and there is no breast specialist/surgeon on staff. In addition to the limited number of treatment services, there are gaps in whether women can access and/or afford these services. As many of our focus groups found, many women discussed that if they were forced to choose between treatment for breast cancer and the basic needs (e.g., mortgage, food, utilities) of their family, women often chose the needs of their family s needs. These financial gaps appear to be the largest barrier for treatment. Support Support services exist in the Affiliate service area for women undergoing treatment for breast cancer in the form of support groups, physical items of assistance (e.g., wigs, hats, breast prosthetics, comfort items), financial assistance, counseling, patient navigation, resource centers, religious support, exercise services, and lymphedema services. One barrier that exists with support services is that many women undergoing breast cancer treatment are not aware (or informed) that the services exist. According to the survey conducted with area breast cancer 24

31 survivors for the purpose of this Community Profile, nearly 20 percent of all breast cancer survivors surveyed report that they do not recall being informed of support services for themselves or their families at the time of their diagnosis. Additional discussions with both providers and area breast cancer survivors revealed that perhaps upon hearing a breast cancer diagnosis, many survivors are overwhelmed with the amount of information that they are taking in. Another barrier is that support services are often concentrated in the urban/suburban centers of the service area making it difficult for women in rural communities to access. In addition to support services offered during the course of treatment for women undergoing breast cancer treatment, surveys, informal conversations and focus groups conducted with area breast cancer survivors identified that women felt that after they were done with treatment there was nothing for them to do or become involved in. Women often felt very busy going to appointments and interacting with multiple people and providers during the course of their treatment. Some women expressed that they had difficulty adjusting to their new normal that their life post-treatment has now become. Post-treatment follow-up is minimal and women expressed feelings of anxiety and sadness after the sessions ending, experiencing a feeling that they identified as What now? Many of these women expressed that they were also fearful of their cancer returning. It appears that there are still providers and breast cancer survivors that are largely unaware of the support services that are provided for female breast cancer survivors and their families as they are going through treatment, again with the majority of support services offered in locations centralized in the urban/suburban areas of the Affiliate service area. Post-treatment support services for breast cancer survivors did not appear to be available (perhaps with the exception of support groups). Methodology Resource Mapping In order to determine the general location and concentration of resources in the Affiliate service area, the 2011 Community Profile Team examined the 2009 Community Profile, the past survey provider contact list, the list of contacts developed from a provider meeting held prior to the submission of the 2009 Community Profile, and input from existing provider contacts in the community. A fairly comprehensive identification of providers was established as a result of this process (See Figures 18, 19, and 20). A limitation of this service provider map is that service type by provider is not identified. A service provider map (or maps) identifying service type by provider is planned for the 2013 Community Profile. Figure 18. Area Providers (Includes Mammography sites) Results of Area Breast Health Resource Scan Figure 19. Mammography Sites only Results of Area Breast Health Resource Scan 25

32 Figure 20. Affiliate funded Community Health Programs, FY2011 Results of Area Breast Health Resource Scan The maps listed above illustrate the providers and to some extent the service coverage provided in the Affiliate area. It is clear from Figures 18 through 20 that area resources appear to be concentrated in the urban/suburban centers of the Affiliate area, leaving rural communities with fewer options and less access to breast health services. The exception is the areas in which the Affiliate and Affiliate funded Community Health Programs are providing breast health education and mobile screening services. Provider Survey conducted on Survey Monkey There were 42 providers who completed the online survey out of 88 sent out, for a completion rate of 48 percent. The number of providers completing the survey is lower than the survey conducted for the 2009 Community Profile (44). However, the 2011 survey results better represent more outlying counties in the Affiliate service area. No incentives of any kind were provided to providers completing the survey. Surveys were available to participants from October 2010 through February Results. The majority of providers completing the survey represented state/local health departments (47 percent; n=18). The remaining organizations represented the following: hospitals (21 percent; n=8), non-profit organizations (21 percent; n=8), outpatient clinics (3 percent; n=1), and other (8 percent; n=3). The majority of breast health service providers completing the survey provided education, screening, and community outreach services with approximately one in every four providers offering treatment services (Figure 21). Figure 21: Service Types provided by Service Providers in Affiliate area Results of Provider Survey conducted on Survey Monkey, October 2010-February

33 The service providers completing the Provider Survey reported that their organization primarily serves women representing the following demographics: low-income, uninsured, Caucasian, and rural. This is inconsistent with the secondary health data, key informant interviews, and focus groups. These data compiled for the service area illustrate that women in rural communities and low-income/uninsured women are less likely to access breast health services, in most cases because of physical location and lack of time. Providers felt as though the majority of the clients they serve benefit most from the financial assistance offered. Service providers believed that the most significant barriers to engaging in breast screening and treatment resources are (1) lack of insurance, (2) lack of financial resources, and (3) fear. The majority of breast health service providers completing the survey reported that their staff would be interested in receiving more information about breast cancer, patient education, networking opportunities, support services, and clinical trials. The results of this survey indicate ways in which the Affiliate can better partner with area breast health service providers to increase outreach to women in rural communities and low-income/uninsured women. This survey also indicates ways that the Affiliate can share breast health information and local resources with providers so that the links between breast health service referrals can be maintained. The results also indicate ways in which the Affiliate can see ways in which we can close gaps between providers and women in rural communities in upcoming funding cycles. Key Informant Interviews Key informants were selected based on their particular knowledge of the systems of care, the cultural aspects, and their overall knowledge of their community. There were five key informants selected and contacted to gain greater insight into particular knowledge of the systems of care, the cultural aspects, and their overall knowledge of their community. No incentives of any kind were provided to persons participating in the key informant interview process. The key informant interviews were conducted from October 2010 through February The following community members served as key informants in their community (Table 13): Results. Table 13. Key Informants and their Agency or Community of Representation Key Informant Agency Community of Representation The majority of the breast health service providers completing the survey reported that their staff would be interested in receiving more information about breast cancer, patient education, networking opportunities, support services, and clinical trials. Julia Gardner Dr. Dan McKellar, FACS and Jill Brown, RN, BSN, OSN YWCA of Greater Cincinnati Wayne HealthCare Cancer Care Program (Darke County, Ohio) Offered insight into the accessibility issues, screening issues, and cultural aspects of the Hispanic/Latina women in the Greater Cincinnati service area. Provider offered insight as to reasons why the Hispanic/Latina population does not typically access services including their fear of breast cancer/medical systems, their lack of knowledge about the disease and preventive screening, and cultural philosophies focusing on women and their role in taking charge of their health (not seen as a priority). Offered information about the growth of their screening services and their Cancer Center services in the past 1 ½ years. Also discussed county-level data (high mortality, but also high level of early stage diagnosis) and discovered that with the increase in screening options available to women in the community, early diagnosis numbers may have increased, but mortality rates could be reflective of previous rates of breast cancer 27

34 in the county that were later stage diagnosis. Indiana area breast cancer survivor (confidential informant) Tami Graham Southeast Indiana Breast Cancer Support Group (Dearborn County, Indiana) Adams County Regional Medical Center (Adams County, Ohio) Offered insight into services available in the southeast Indiana area, how and where women in that community access screening and treatment services. Survivor discussed that women in this county/community are more likely to access services outside of the county (with Breast Cancer Center in Florence, Kentucky and services offered in the city of Cincinnati only 30 minutes away) Offered insight as to why women in the area access breast health services outside of the county. Provider identified that many of the reasons women access services outside of the county are that there is very limited breast health services with the county, women may access services that are in-line with their insurance provider group or network, and lack of awareness about the importance of preventive breast health. Dianne Coleman Gallatin County Health Department, Three Rivers District Health Deparment (Gallatin County, Kentucky) Results of Key Informant Interviews, October 2010-February 2011 Offered insight into why women in this community access resources in the Florence, Kentucky area (only 30 minutes away). The informant also gave insight into the reasons why women in the community do not access breast health services including fear of breast cancer diagnosis/medical process, lack of financial/insurance resources, and lack of awareness about the importance of preventive breast health. The key informant interviews reiterated the need for breast health resources in rural areas and among African American and Hispanic/Latina populations within the Affiliate service area. The insights provided by survivors and providers representing rural, African American and Hispanic/Latina communities provided the Community Profile Team with explanations as to why these communities do not utilize or access breast health services. The primary reasons that emerged were again related to the physical, financial, and cultural barriers that existed for these communities. Although the Community Profile Team is confident in the information gathered as part of the entire community profile process, one limitation to the survey and the key informant interviews is that time restrictions prevented the Community Profile team from contacting additional providers in the Affiliate service area. Growing Partnerships The Affiliate will remain involved with and will begin hosting the Greater Cincinnati Breast Health Collaborative in order to strengthen existing relationships and establish new partnerships. The purpose of the Greater Cincinnati Breast Health Collaborative will grow to become a strategic problem-solving group to assist in the connections of breast health services in order to close gaps in the continuum of care. The Affiliate will also expand collaboration efforts in the Dayton metropolitan and rural communities within the service area, to impact breast health services provided in these communities. In addition to growing relationships with providers, Affiliate staff will strive to establish trusting, long-term relationships with community members within target communities and populations. The Affiliate will continue to remain involved and active in legislative issues by participating in both the Susan G. Komen for the Cure National and Ohio Lobby Day initiatives and advocating for sustained funding of the BCCEDP/other current breast health objectives. Breast Cancer Perspectives in the Target Communities Methodology In order to get a richer and more accurate picture of the Affiliate service area (beyond the secondary health data and the health systems analysis), the 2011 Community Profile Team collected data from four sources: (1) Survey of general community members in the service area on Survey Monkey 28

35 (2) Survey of breast cancer survivors in the service area on Survey Monkey (3) Focus groups conducted in the service area (nine focus groups total); and (4) Photovoice groups with area breast cancer survivors General Community Member Survey conducted on Survey Monkey Surveys were sent to general community members through direct invite from Survey Monkey and through ing/posting the link in accessible locations. The direct invites sent from Survey Monkey consisted of non-survivor s collected from the Affiliate s RFTC registration. The survey link was also posted on the Affiliate s website and Facebook account. Posters with the survey link were posted at breast health service provider locations, local health departments and other conspicuous locations in the Affiliate service area in an extended effort to reach outlying counties and underrepresented populations. Additional survey links were sent by way of snowball sampling by persons completing the survey sending the link to acquaintances. No incentives of any kind were provided to persons completing the survey. Surveys were available to participants from December 2010 through February Approximately 7,000 surveys were sent out and 655 surveys were completed, a completion rate of nine percent. Results. Of the participants completing the survey, the majority were Caucasian females. All states in the Affiliate service area were represented with the largest percentage of participants representing Ohio. Breast Health Knowledge. General community members were asked to identify their knowledge of breast health screening guidelines and barriers to accessing care. Participants completing the survey expressed a lack of knowledge or confusion about screening guidelines for preventive breast health services. Barriers. Participants also identified that the primary barriers for women in their community to accessing breast health screening and/or treatment services were lack of health insurance/financial resources, no current breast problems existed, and no family history of breast cancer. Support. Regarding support services, participants believed that the primary reasons women experiencing a breast cancer diagnosis did not access support services was lack of knowledge of such services, fear of attending meetings/groups, and do not think meetings would be helpful. Overall findings of the general community member survey are consistent with the secondary health data and health system analyses findings that also identify that lack of knowledge and financial resources prevent women from accessing breast health services. Another finding of this survey was that there exists a need for increased BSA, education on the importance of breast health screening and early detection, and resources available along the breast health continuum of care. Breast Cancer Survivor Survey Conducted on Survey Monkey Surveys were sent to breast cancer survivors through direct invite from Survey Monkey and through ing/posting the link in accessible locations. The direct invites sent from Survey Monkey consisted of survivor s collected from RFTC registration. The survey link was also posted on the Affiliate s website and Facebook account. Posters with the survey link were posted at breast health service provider locations, local health departments and other conspicuous locations in the Affiliate service area in an extended effort to reach outlying counties and 29

36 underrepresented populations. The Community Profile Team Leader met with area breast cancer survivors and they were invited to participate in the online survey. No incentives of any kind were provided to persons completing the survey. Surveys were available to participants from October 2010 through February Of the approximate 800 surveys that were sent out 401 surveys were completed, a completion rate of 49 percent. Results. Of the participants completing the breast cancer survivor survey, the majority of participants reported that they resided in Hamilton County (nearly 38 percent). The majority of the participants completing the survey reported that they were Caucasian (95 percent), female (99 percent), and between the ages of 40 and 59. Breast Health Knowledge. Overall the frequency of regular screenings increased for breast cancer survivors completing the survey when compared to before their diagnosis. Of the breast cancer survivors that reported that they did not engage in screening behaviors, the primary reasons were I had a mastectomy, lumpectomy, and increased frequency in doctor s appointments/regular exams. Breast cancer survivors believed that the primary barriers for women to engage in screening services are fear, lack of knowledge, lack of insurance, and cost. The majority of participants reported that their breast cancer was discovered by either breast self exam (36 percent) or mammogram (45 percent). The majority of respondents reported that they were diagnosed at an early stage (Stage 0, Stage I, or II). Support. Of the breast cancer survivors that participated in the survey, about 51 percent reported that they had used support services. Approximately one in five participants report that they were never offered support services during their treatment. As previously mentioned, further discussions with both providers and area breast cancer survivors revealed that perhaps upon hearing a breast cancer diagnosis, many survivors are overwhelmed with the amount of information that they are taking in. Of the women receiving a breast cancer diagnosis that reported participating in support services, support groups and nurse navigation services emerged as the most beneficial. As identified throughout this report, both of these services appear to be most accessible in the more suburban/urban centers of the Affiliate service area with limited outreach to rural communities. The responses from the survivor survey are consistent with the compiled secondary health data and the health system analyses that were included in this report. Breast cancer survivors identified the same barriers for screening (fear, lack of insurance, cost, and lack of knowledge) as identified in the provider survey, general community member survey, the key informant interviews, and the focus groups. It was also identified in the Provider Surveys that more information about available resources would be helpful for agency and organization staff- this is consistent with survivors identifying that they were not informed or do not remember being informed about available resources to navigate their treatment and/or disease. Another It was again made apparent that there exists a need for increased BSA, education on the importance of breast health screening and early detection, and resources available along the breast health continuum of care. Focus Groups Conducted in the Affiliate Service Area Nine focus groups were completed in the Affiliate area and were organized in community areas and populations of interest. Focus groups were conducted in the following areas and with the 30

37 following populations: Dearborn County (IN), Newport (Campbell County, Kentucky), Covington (Kenton County, Kentucky), Gallatin County (KY), Greene County (OH), Northside (neighborhood in Hamilton County, Ohio), Adams County (OH), Brown County (OH), and one representing African American women (representing the Bond Hill, Price Hill, and Avondale neighborhoods within Hamilton County, Ohio). Recruitment for focus groups was done through local health department personnel, local libraries, local service providers, and contacts within the 2011 Community Profile Team. A raffle prize and refreshments were offered at each focus group conducted in the Affiliate service area. The focus groups were conducted by graduate student volunteers and the 2011 Community Profile Team Leader from October 2010 through February Graduate student volunteers participated in focus group training in October 2010 to create best practices and consistency in the data collection. Results. Across the nine focus groups conducted in the Affiliate service area, approximately 48 participants offered input about barriers and accessibility issues An additional issue that emerged in the rural communities was lack of insurance and financial resources to cover preventive and treatment services. related to breast health services. The backgrounds of participants across focus groups varied from medical/health department personnel to unemployed and low-income community members. Breast Health Knowledge. The focus groups that were conducted in the rural communities illustrated a lack of knowledge of BSA, the importance of breast health screening and early detection, and existing breast health resources. Accessibility. The largest issue identified among rural communities was access to existing resources due to the physical location of breast health continuum of care resources. Focus groups conducted in areas closer to the concentration of resources expressed that they did not feel that the availability of resources for screening, treatment, and support was problematic. Financial Resources. An additional issue that emerged in the rural communities was lack of insurance and financial resources to cover preventive and treatment services for breast health. Even if breast health services were available, participants often expressed lack of knowledge about where to find these resources and what financial burdens would be placed upon an un-/under-insured population. Cultural Belief systems. In the African American community focus group it was reported that a strong cultural beliefs often interfered with women engaging in preventive screenings. Group members reported that women in their communities often refused or neglected to get preventive screenings (1) because screening was not a priority and (2) fear that if they did discover they had cancer, their boyfriend or husband would leave them. Focus group members representing some African American communities felt as though many women in their communities did not get screened because they would have to take off work, would not have access childcare, or could not afford the screening. Cultural beliefs also interfered with their preventive screenings in a way that reinforced myths and further increased the fear of breast cancer (e.g., when women get breast cancer they die, if women get breast cancer they have to get their breast removed and are no longer a women, if women get breast cancer they are no longer able to take care of their family, modesty about medical professional examining that part of their body). These cultural beliefs appear to be 31

38 deeply ingrained within these African American communities (and many emerged in the key informant interview with professional representing the Hispanic/Latina community). Affiliate staff understands that these cultural belief system are powerful and may take lengthy efforts to impact, beginning with significant trust and relationship building with this communities. The focus groups further supported the findings of the secondary health data and the health systems analyses another Photovoice participant stated that once she was diagnosed, my world just kept spinning and spinning, around and around, up and down, and I just wish that for one day, I could sit on a stationary animal on this carousel of emotions (Figure 23). illustrating the need for increased education and relationship-building in all communities in the 21 county Affiliate service areas. These focus group results solidify the need for outreach, access to, and knowledge and importance of breast health services among rural populations and African American and Hispanic/Latina populations. Photovoice Groups Conducted with Area Female Breast Cancer Survivors Photovoice methodologies have historically been useful for establishing an avenue of empowerment among populations that are typically identified as underrepresented in traditional research methodologies (Wang & Burris, 1997; Wang, 1999). Photovoice groups allowed female breast cancer survivors to tell their breast cancer experience through photographs. Two Photovoice groups were held in the Affiliate area. The Photovoice groups were held in Northern Kentucky and Southeastern Indiana. A total of six women participated in the Photovoice groups, representing small groups, however with intense results. Recruitment for these groups was done through local breast cancer support groups. Refreshments were offered at each Photovoice group conducted in the Affiliate service area. Participants also received a token of appreciation from the Affiliate at the conclusion of the process. The Photovoice groups were conducted by the 2011 Community Profile Team Leader (a graduate student trained in this approach) from November 2010 through January Results. Group members actively participated in four sessions that were outlined in the following way: (1) Introduction to Photovoice and understanding photography ethics, (2) Review of photographs from When I found out/my Diagnosis theme, (3) Review of photographs from My Treatment theme, and (4) Review of photographs from My Support theme. Before members began taking pictures of their experience, each member was made aware that they would be participating in a process in which the final pictures would belong to Affiliate. Each participant signed a photo release form in order to participate in the process and was told that they could withdraw from the group sessions at any time during the process. Group members took emotional photographs representing their feelings and experiences as they progressed along the continuum of care of breast cancer services (from diagnosis through support). In processing the three areas on the continuum of care, themes emerged that illustrated their experiences. The themes that emerged for When I found out/my Diagnosis were women feeling a loss of control, loneliness, emptiness, and anger. One illustration of this is identified in Figure 22 in which the women described the photo as the world continues to go on/move on without me, and yet I am standing perfectly still, crippled by this news. In further processing their diagnosis of breast cancer, another Photovoice participant stated that once she was diagnosed, my world just kept spinning and spinning, around and around, up and down, and I 32

39 just wish that for one day, I could sit on a stationary animal on this carousel of emotions (Figure 23). When photovoice participants discussed their treatment, themes that emerged included losing part of myself/my womanhood, fear of medical systems/procedures, and nausea that developed from the treatments. As illustrated in Figure 24, losing my hair was a tough thing for me, but I tried to keep smiling. Figure 25 represents a group participant s photo representing My Support. The participant expressed that I feel myself getting stronger and stronger. I participated in the Race for the Cure two years ago and my husband had to help me cross the finish line and this past year, I walked it myself and even helped my friend pull her small child in a wagon. Figure 22. Photovoice: When I Found Out/My Diagnosis (I) Figure 23. Photovoice: When I Found Out/My Diagnosis (II) Figure 24. Photovoice: My Treatment Figure 25.Photovoice: My Support Themes that emerged among participants for My Support were the support they experienced from their family, friends, and pets. The Photovoice process further illustrated the findings of the secondary health data and health systems analyses supporting the need for better avenues of support and connections (perhaps through navigation support services) for women diagnosed with breast cancer and post-treatment survivors and their families along the breast health continuum of care. Conclusions: What We Learned, What We Will Do Review of the Findings The combination of the secondary health data, the health systems analyses, the surveys, and the key informant interviews/focus groups provide a comprehensive picture of the state of breast health and services available for women in the Greater Cincinnati Affiliate area. As seen in the narrative of this report, this guided the 2011 Community Profile Team to prioritize target areas and populations for the Affiliate to address in the coming years. The 2011 Community Profile 33