COMMUNITY PROFILE REPORT 2010 Greater Kansas City Affiliate of Susan G. Komen for the Cure

Transcription

1 COMMUNITY PROFILE REPORT 2010 Greater Kansas City Affiliate of Susan G. Komen for the Cure 2011

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

3 ACKNOWLEDGMENTS The Susan G. Komen for the Cure Greater Kansas City Affiliate sincerely appreciates all of the time and effort our community partners, agencies, members and key individuals have offered to help provide the vast array of data and service information that is included in this document. Prepared by: Susan G. Komen for the Cure Greater Kansas City 1111 Main St. Suite 450 Kansas City, MO Contact: Theresa Osenbaugh, Community Outreach Manager Community Profile Team: Barbara P. Allen, J.D Community Profile Report Team Leader MPH Candidate, The University of Kansas School of Medicine, Master of Public Health Program, May 2011 Theresa Osenbaugh, M.S.W. Community Outreach Manager, Susan G. Komen for the Cure Greater Kansas City Melissa Reed Administrative Assistant to the Team Michelle Rissky MPH Candidate, The University of Kansas School of Medicine, Master of Public Health Program, May 2011 Strategic Mission Committee (Lydia Marien, Pam Mahoney, Mary Lou Kegler, Cheryl Jernigan Carol Faucher, Dr. Linda Harrison, and Donna Valponi) Expert Partners: Sue M. Lai, Ph.D., MS, MBA Professor, Director, Kansas Cancer Registry The University of Kansas School of Medicine Chester Lee Schmaltz Statistician Missouri Cancer Registry Victoria Wangia, PhD Professor, School of Nursing - Center for Health Informatics The University of Kansas School of Medicine 3

4 Affiliate and Community Partners: Lori Maris, Executive Director Susan G. Komen for the Cure Greater Kansas City Catherine Linden, Board President Susan G. Komen for the Cure Greater Kansas City Stephanie Adams Finance Coordinator Susan G. Komen for the Cure Greater Kansas City All Key Informant Interviewees Natalie Banks, Ambassador Susan G. Komen for the Cure Greater Kansas City Rita Davenport Early Detection Works KS Dept. of Health & Environment Deb Ellis Community Services Director NEK-CAP, Inc. Jeannette Emerson Board President Adrian Public Library Cristina Bernal-Estudillo Program Coordinator Coalition of Hispanic Women Against Cancer Kendal Evans ENCOREplus Manager & Bilingual Educator YWCA of St. Joseph Cielo Fernandez Promontora Project Manager El Centro, Inc. Carl Fowler Graphic Designer Snow Ball Restaurant Doris Grant Health Educator Black Health Care Coalition Phyllis Harris Regional Coordinator, LIFT-Missouri Webster University President, Xi Tau Omega Chapter Alpha Kappa Alpha Sorority Cheryl Hebblethwaite Director of Community Education Bates County Memorial Hospital Rita Berry-Holmes KGGN Radio Jeannette James Women s Resource Director YWCA of St. Joseph Julee Jones KPRN Radio Mindy Laughlin Program Manager Show Me Healthy Women Alexis McDaniel Food and Beverage Director YWCA of Greater Kansas City Ryan McDowell IRB Administrator Human Research Protection Program & HSC University of Kansas Medical Center Shelly Penn Executive Director Full Employment Council Megha Ramaswamy, PhD, MPH Assistant Professor Department of Public Health & Preventive Medicine Associate Director Master of Public Health Program University of Kansas Medical Center Carrie Rice Palestine Gardens Melissa Robinson President & CEO Black Health Care Coalition Dustrina Smith Ad-Hoc Laura Thien, ARNP Nurse Practitioner Adrian Clinic LLC Albert Valdez General Manager & Owner Snow Ball Restaurant Dan Voss IRB Administrator Human Research Protection Program & HSC University of Kansas Medical Center Diana Weaver Atchison Public Library Kim Weir AudioVisual Department Kansas City Kansas Public Library, Main Branch Stephenie Wells Managing Executive, Independence Office Full Employment Council A special thank you to Baptist-Trinity Lutheran Legacy Foundation for its generous financial support of the 2011 Community Profile. 4

5 Table of Contents Executive Summary... 6 Introduction... 6 Statistics and Demographic Review... 7 Health Systems Analysis... 8 Qualitative Data Overview Action Plan Introduction Affiliate History Organizational Structure Description of Service Area Purpose of the Report Breast Cancer Impact in Affiliate Service Area Methodology Overview of the Affiliate Service Area Communities of Interest Conclusions Health Systems Analysis of Target Communities Overview of Continuum of Care Methodology Overview of Community Assets Legislative Issues in Target Communities Key Informant Findings Conclusions Breast Cancer Perspectives in the Target Methodology Review of Qualitative Findings Conclusions Conclusions: What We Learned, What We Will Do Review of the Findings Conclusions Action Plan Tables and Figures Figure 1. Susan G. Komen for the Cure Greater Kansas City-Organizational Chart.12 Figure 2. Susan G. Komen for the Cure Greater Kansas City -Service Area Map.13 Figure 3. Clay County MO, Female Breast Cancer Incidence Rates Figure 4. Women 40+ Undergoing Mammography Screening in Past 12 Months.19 Figure 5. Greater Kansas City Service Area: Target Counties..20 Figure 6. The Continuum of Care...24 Figure 7. Susan G. Komen for the Cure Greater Kansas City-Asset Map...26 Table 1. New Cases of Female Invasive Breast Cancer- Kansas.16 Table 2. Stages at Diagnosis for New Cases of Invasive Female Breast Cancer-KS 17 Table 3. New Cases of Female Invasive Breast Cancer- Missouri.. 17 Table 4. Stages at Diagnosis for New Cases of Invasive Female Breast Cancer-MO..18 5

6 Executive Summary Introduction Who We Are Susan G. Komen for the Cure Greater Kansas City ( Komen Kansas City or the Affiliate ) began with a Race for the Cure event in 1994 organized by three women who relocated to Kansas City from Washington, DC. Each year, the Race grew in participation and donations. In 1999, the first Board of Directors was named and Kansas City became an Affiliate of Susan G. Komen for the Cure serving 12 counties in Missouri and Kansas. Just three years later in 2002, the Affiliate hired its first Executive Director. In 2007, Komen Kansas City expanded it s service area, capturing five additional counties in Kansas that were not being served by another affiliate. Today, the Kansas City Affiliate covers a 17 county service area counties in eastern Kansas and seven counties in western Missouri (see Figure 2.) Nodaway Gentry Holt Pottawatomie Wabaunsee Nemaha Holton Jackson Shawnee Osage Hiawatha Brown Doniphan Atchison Atchison Jefferson Oskaloosa Lawrence Douglas Franklin Troy Andrew St. Joseph Buchanan Johnson Olathe Miami Dekalb Clinton Harrisonville Cass Daviess Caldwell Platte Leavenworth Platte City Clay Ray Leavenworth Liberty Kansas City Wyandotte Independence Lafayette Kansas City Jackson Overland Park Paola Johnson Warrensburg Carroll Pettis Saline Henry Anderson Linn Butler Bates Benton St Clair Hickory Vernon Cedar Figure 2. Susan G. Komen for the Cure Greater Kansas City Service Area Map Key Activities Since inception, the Affiliate has put over nine million dollars back into breast cancer research and services. Up to 75 percent of the funds raised in Kansas City remain local with the remaining net income supporting the national Komen Grants Program. Funds raised through the annual Susan G. Komen Race for the Cure, Breast Cancer Survivor Luncheon and other events allow us to fund breast health programs and services and educate the community on breast self awareness. Komen Kansas City provides representatives at several health fairs, speaking events, and other engagements throughout the year. Komen Kansas City also works as an advocate for breast health at the local, state, and federal policy levels. Purpose of the Community Profile Report The purpose of the 2011 Community Profile report (CP) is to conduct an updated needs assessment of Komen Kansas City s 17 county service area. The CP is a snapshot of the state of female breast cancer in the Affiliate s service area, allowing us to pinpoint where our efforts will have the most impact. The assessment is used to establish 6

7 priorities for the Affiliate s decisions regarding grant funding, education, advocacy, marketing, outreach and public policy activities. Demographics and Statistics Review Community Profile (CP) data was collected from a variety of federal, state and local resources representing the wealth of racial and socio-economic diversity of the Greater Kansas City area. The Affiliate serves just over 2.27 million people, of whom nearly 51 percent are women. Over 500,000 of those women are 40 years of age or older. Our service area covers a total estimated square mileage of 8,921, consisting of the urban population of the metropolitan area, as well as rural locations. According to the U.S. Census Bureau (2010), our service area population is estimated to be 83.5 percent Caucasian, 11.6 percent African American, 2.3 percent Asian, and less than one percent Pacific Islander /Hawaiian and American Indian and/or Alaskan Native. Census estimates show that 7.2 percent of the current service area population identifies itself as Hispanic. Some residents identify with more than one race. Mortality & Late Stage Diagnosis Female breast cancer mortality rates in our two largest target counties, Wyandotte County, KS and Jackson County, MO, are higher than the U.S. average (26.7 and 27.8 respectively vs. 25.3) (REACH Healthcare Foundation, Regional Health Assessment Report, 2010). In our less populated counties, we are unable to identify any concerning mortality trends, utilizing actual data, due to unstable data resulting from small population size. Stages of breast cancer at diagnosis vary across our service area. The percentage of female breast cancers diagnosed at a distant stage was 5.7 percent in Buchanan County, MO and five percent in Jackson County, MO, which is slightly higher than observed in other counties. Wyandotte County, KS shows the highest percentage of female breast cancers diagnosed at a distant stage at a rate of 6.5 percent. Screening Rates Locally, our service area shows an estimated average of 62 percent of all women over the age of 40 receiving an annual mammogram. The lowest screening rates for our service area can be found in the following Kansas counties: Atchison (58.6 percent), Brown (58.9 percent), Doniphan (58.6 percent), Jackson (60.4 percent), and Wyandotte (60.9 percent) and in the following Missouri counties: Bates (58.4 percent), Buchanan (61.8 percent), and Johnson (60.4 percent). (Thomson Reuters 2009). Target Communities Our target communities are those whose cumulative key indicators reflect vulnerable populations likely at risk for experiencing gaps in breast health services and/or barriers in access to care. Our selected target communities are listed below. 7

8 Kansas: Wyandotte County Region A: Atchison, Brown, Doniphan, and Leavenworth Counties Missouri: Bates County Buchanan County Jackson County Wyandotte County, KS By every definition of persons considered medically vulnerable, a high percentage of Wyandotte County residents qualify. The percent of people who are uninsured is remarkably higher than the national average. Wyandotte County also has the highest levels of diversity in our service area. Screening rates in Wyandotte County are identified as lower than average across the service population and the distant staging percentage is higher than average for the service area. (Kansas Cancer Registry, Thomson Reuters 2009). Jackson County, MO Poverty levels in Jackson County are noticeably high and a concerning five percent of breast cancer cases are diagnosed at a distant stage in Jackson County. The female breast cancer mortality rate in Jackson County is higher than the national average (REACH Healthcare Foundation, Regional Health Assessment Report, 2010; Thomson Reuters 2009; Missouri Cancer Registry, 2010/2011). Region A, KS Region A, located in northeast Kansas, consists of Atchison, Brown, Doniphan, and Leavenworth counties. These counties have been grouped together in order to obtain stable incident and staging data. Region A has a high unemployment rate, over 10 percent of the population living in poverty, and lower than average screening rates. Additionally, the location of these counties in comparison to the metropolitan area may make access to health services more complex. Bates County, MO Bates County has the lowest median household income, the second highest unemployment rate, and the third highest number of residents living below poverty in the entire service area (U.S. Census Bureau, 2010; Missouri Department of Labor, 2010). It is estimated only 58.4 percent of women age 40+ receive an annual mammogram. (Thomson Reuters 2009). Buchanan County, MO Buchanan County has the 4th highest percentage of residents living below poverty in our 17 county service area (U.S. Census Bureau, 2010; Missouri Department of Labor, 2010). Buchanan County also has a lower estimated screening rate and a higher than average distant stage diagnosis for our service area. Health Systems Analysis The Komen Kansas City health system analysis included the mapping of health care providers in our service area. Also, key informant interviews were conducted within 8

9 our chosen target counties through survey format. Inventory and Asset Map Process An asset map of the entire service area, was created. The data was collected utilizing the following: Kansas Department of Health and the Missouri Department of Health and Senior Services; Kansas and Missouri Hospital Associations; Kansas and Missouri Cancer Registries, the National Cancer Institute (NCI) website and the American Cancer Society (ACS) website; and through numerous online resources including the U.S. Food and Drug Administration Mammography Program for certified facilities in the Greater Kansas City area. The asset map identified that the majority of intensive services along the continuum of care were centered near the metropolitan and larger cities within the service area. This may be detrimental to service availability for communities that are rural. Community members in rural areas spoke of their preference to often seek care in the larger cities due to their perception of services available. Key Informant Methodology - Selection and Recruitment Ten key informant interviewees were selected from leaders located within the eight target communities. These leaders serve in a variety of health and breast cancer prevention roles including radiology technicians, medical doctors and community organization Executive Directors. The questions were designed to analyze the full breast health continuum of care - education, screening, diagnosis, treatment, and aftercare - in an informant s particular target region. Specific Gaps and Barriers in Target Communities Key informant interviews confirmed uninsured women find it difficult to maneuver the continuum of care and undocumented women have the most difficult time as there are no funding sources easily available to them. Women who qualify and are enrolled in a National Breast and Cervical Cancer Early Detection Program (NBCCEDP), which provides screening, have a similar experience to those who are insured. Clients who need access to treatment often have major financial challenges. Not only is the treatment expensive, but the client may experience a loss of income if treatment reduces their ability to work. Through current and potential partnerships, we can make a significant impact on breast cancer in our service area. Current and future partners include: grantees, other health care systems and organizations in our service area, and community members who are passionate about the fight against breast cancer. In addition, advocate partners are essential in ensuring that all women have access to timely, affordable, high-quality breast health care services, regardless of income, even during hard financial times. As with most states, economic hardships have brought forth state budget shortfalls, forcing government officials to look at cuts. As a trusted, knowledgeable source, Komen closely follows state and national legislation and educates representatives around breast services and community needs. 9

10 Qualitative Data Overview and Focus Groups Collection and Analysis For further understanding of our service area, women living in the target communities were recruited to participate in focus groups. Focus group requirements included being female, age 40 or older, and not having had a mammogram in the last two years. We also allowed some survivors, women who had recent mammograms and younger women who were interested in the focus groups to participate. Focus groups were composed of approximately 6-8 women, although the group size ranged from 3 to 15 women. Nine focus groups were conducted throughout the target counties. Three urban Latino, three African-American, two urban white, and one rural white groups were conducted. Key Findings and Themes Focus group discussion often correlated with issues brought forth through provider interviews. Themes emerging from focus groups elaborated on provider s responses, allowing for analysis of breakdowns throughout the breast health continuum of care. Breast self-awareness education was the first barrier exposed during analysis. Although providers identified offering breast health education for women of all ages, community residents presented at different education levels regarding breast health. Providers suggested presenting breast health information to the community through materials such as pamphlets at health fairs and outreach events. However, women in every focus group identified that although most materials were available at an appropriate literacy level, pamphlets alone were not an effective method for education. Once women are educated on breast self-awareness, they are often unclear how to obtain services. Many women in the community are not aware that services for the under/uninsured exist. In addition, a gap occurs in the breast health continuum of care for women who do not qualify for programs due to income level or other factors, yet do not have health insurance benefits through other means. Treatment for those who are diagnosed is a barrier for the majority of women in our service area, due to the extremely high costs of care. Discussion from the community members brought forth feelings that women felt once diagnosed, they would be unable to receive treatment. Therefore, they did not bother with the initial screening, for if a diagnosis was to occur, they would not be in better shape than before the results were known. ACTION PLAN The 2011 Community Profile team worked closely with the Affiliate s Strategic Mission Committee to develop an Action Plan to address gaps in the continuum of care. In light of the reoccurring themes, Komen Kansas City has identified three priorities and two objectives for each priority. 10

11 Susan G. Komen for the Cure Greater Kansas City Action Plan Priority 1: Partner with community-based organizations to promote breast selfawareness and available services which reduce socioeconomic status barriers. By December 20, 2011, Komen KC will identify and establish relationships with three non-health community-based organizations to provide breast selfawareness resources to be distributed to targeted populations. By March 31, 2013, distribute specific breast health information to populations that fall at or below the federal poverty level in five targeted areas through efforts unique to that population s needs. Priority 2: Increase breast self-awareness and knowledge of available community services throughout the service area that decrease barriers to screening. By March 31, 2012, increase education about breast self-awareness to expand beyond looking/feeling only for lumps and address confusion about frequency of screenings through monthly online educational topics and presentations. By March 31, 2013, increase education about breast self-awareness to expand beyond looking/feeling only for lumps and address confusion about frequency of screenings through two media campaigns. By March 31, 2013, develop and implement methods to disseminate breast selfawareness resources that facilitate a greater reach and understanding of breast health among patients/constituents with two primary care providers in each of the following counties: Buchanan, Missouri, Jackson, Missouri, and Wyandotte, Kansas. Priority 3: Through Komen leadership, strengthen collaborative relations among the Affiliate, community organizations and healthcare providers throughout the service area to identify services that meet community needs identified in the community profile. By March 31, 2013, we will develop a publicly accessible database of breast health services that meet the identified community needs. By March 31, 2013, we will hold a summit with key community members to discuss the gaps in the breast health continuum of care and plans to increase community awareness of these gaps. 11

12 Introduction Affiliate History Nancy G. Brinker 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 and launched the global breast cancer movement. Today, Komen for the Cure is the world s largest grassroots network of breast cancer survivors and activists fighting to save lives, empower people, ensure quality care for all and energize science to find the cure. Susan G. Komen for the Cure Greater Kansas City began with a Race for the Cure event in Each year, the Race grew and eventually developed into an Affiliate of Komen for the Cure. The Board of Directors was established in 1999 and three years later, the first Executive Director was hired. Since inception, the Affiliate has put over nine million dollars back into breast cancer research and services. Up to 75 percent of the funds raised in Kansas City remain local, funding grants to hospitals and community organizations that provide breast health research, diagnostics, screening, treatment, services and educational programs for medically underserved men and women. The remaining net income (a minimum of 25 percent) supports groundbreaking breast cancer research in an effort to discover the causes of breast cancer and, ultimately, it s cures. The Affiliate works tirelessly to educate the public on breast self awareness and advocate for breast health initiatives on a local, state, and federal policy level. One in eight women in the U.S. will be diagnosed with breast cancer in her lifetime and breast cancer is the leading cause of death among women ages in the U.S. Breast cancer affects everyone including spouses, children and other co-survivors. Getting screened regularly for breast cancer is the best way for women to lower their risk of dying from the disease. When breast cancer is found before it spreads beyond the breast, the five-year survival rate in the U.S. is 98 percent. This is up from 74 percent in Organizational Structure The Komen Kansas City Affiliate has a full-time staff of seven (see Figure 1), a 13- person Board of Directors, and nearly 200 active volunteers serving on committees, acting as educational ambassadors and volunteering for our annual special events. Figure 1. Susan G. Komen for the Cure Greater Kansas City staff organizational chart. 12

13 Description of Service Area In 2007, Komen Kansas City expanded its service area, capturing five additional counties in Kansas that were not being served by other Komen Affiliates. Today, the Kansas City Affiliate covers a 17 county service area 10 counties in eastern Kansas and seven counties in western Missouri (see Figure 2). Recent census data indicates Komen Kansas City s 10 Kansas counties represent approximately 35 percent of Kansas total population; the Affiliate s seven Missouri counties represent approximately 21 percent of Missouri s total population. We serve just over 2.27 million people, of whom nearly 51 percent are women. Over 500,000 of those women are 40 years of age or older. Our service area covers a total estimated square mileage of 8,921, consisting of the urban population of the metropolitan area, as well as rural locations further from the Metropolitan. According to the U.S. Census Bureau (2010), our service area population is estimated to be 83.5 percent Caucasian, 11.6 percent African American, 2.3 percent Asian, and less than one percent Pacific Islander /Hawaiian and American Indian and/or Alaskan Native. Census estimates show that 7.2 percent of the current service area population identifies itself as Hispanic. Some residents identify with more than one race. English is a second language for 7.3 percent of our population, and 10.9 percent of our population has an annual income below the federal poverty level. Population estimates and demographic data on the makeup of the service area were obtained from the U.S. Census Bureau, 2010 and from Thomson Reuters Nodaway Gentry Holt Pottawatomie Wabaunsee Nemaha Holton Jackson Shawnee Osage Hiawatha Brown Doniphan Atchison Atchison Jefferson Oskaloosa Lawrence Douglas Franklin Troy Andrew St. Joseph Buchanan Johnson Olathe Miami Dekalb Clinton Platte Leavenworth Platte City Clay Leavenworth Liberty Kansas City Wyandotte Independence Kansas City Jackson Overland Park Paola Harrisonville Cass Daviess Caldwell Ray Lafayette Johnson Warrensburg Carroll Pettis Saline Henry Anderson Linn Butler Bates Benton St Clair Hickory Vernon Cedar Figure 2. Susan G. Komen for the Cure Greater Kansas City Service Area Map. 13

14 Purpose of Report Komen s promise is to save lives and end breast cancer forever by empowering people, ensuring quality care for all and energizing science to discover the cures. To meet this promise, Komen Kansas City relies on the information obtained through the Community Profile process to guide the work needed to accomplish the promise in it s communities. The purpose of the 2011 Community Profile report (CP) is to conduct an updated needs assessment of Komen Kansas City s 17 county service area. The assessment is used to establish priorities for the Affiliate s decisions regarding grant funding, education, advocacy, communications, outreach and public policy activities. It is our road map for future funding and will guide the Affiliate s Strategic Plan for the next two years. The CP is a snapshot of the state of female breast cancer in the Affiliate s service area, allowing us to pinpoint where our efforts will have the most impact. This comprehensive study utilizes quantitative (statistical) and qualitative (focus group and provider interview) data collection and analysis. We first conducted an overview of demographic and female breast cancer statistics in the entire service area. Following a preliminary analysis that highlights certain target counties or geographic regions for further study, we collected more detailed information about the breast health needs of the target communities and populations perceived to be medically vulnerable and underserved. An updated assessment of the programs and services gaps, as well as needs and barriers for breast health in our service area, allows the Affiliate to focus on closing the gap between the needs and the available resources and services in our target communities. The updated assessment also determines how to remove barriers inhibiting access to care encountered by medically underserved women in our community. The Affiliate can ensure effective and targeted efforts by identifying the geographic areas, demographic groups and disadvantaged populations who are most in need of access to breast health programs and services, allowing our funding and community outreach efforts to have the greatest impact possible. In addition, the CP offers updated information about the assets in our target communities that can be looked to for partnership and collaborative interventions. 14

15 Breast Cancer Impact in Affiliate Service Area Methodology Data Sources. Community Profile (CP) data was collected from a variety of federal, state and local resources as well as from two healthcare foundations. Demographic data was based upon and sourced from statistics obtained from the U.S. Census Bureau, the U.S. Department of Health and Human Services, the U.S. Department of Labor, Bureau of Labor Statistics, the Missouri and Kansas Departments of Labor, the Kansas Department of Health and Environment, Thomson Reuters 2009, the National Cancer Institute s (NCI) Surveillance, Epidemiology and End Results (SEER) program, the Centers for Disease Control (CDC) and Prevention, Behavioral Risk Factor Surveillance System (BRFSS), the American Cancer Society (ACS), the Kansas Cancer Registry (KCR), the Missouri Cancer Registry (MCR), KIDS Count data center, the REACH Healthcare Foundation and the Kaiser Family Foundation. Local expert partners, including the Director of the Kansas Cancer Registry and a statistician from the Missouri Cancer Registry, were contracted with or provided pro bono consulting services to assist the CP Team with evaluation and interpretation of the available data. The availability of current statistics varies depending on source but all sources contain data no earlier than 2000 (the previous Census year). Data limitations occurred when researching incidence and staging data in smaller populated counties. Expert partners identified that small population sizes hinder the ability for meaningful data due to a small number of cancer cases. To overcome this limitation, some counties were grouped and a range of 10 years was calculated to obtain stable statistics. Limitations also include the accuracy of information provided to the cancer registries, including reporting of all identified cases and stages. Overview of the Affiliate Service Area Female Breast Cancer Mortality Female breast cancer mortality rates across our service area were reviewed. From this analysis, we note of particular concern that female breast cancer mortality rates in our two largest counties, Wyandotte County, KS and Jackson County, MO, are higher than the U.S. average (26.7 and 27.8 respectively vs. 25.3) (REACH Healthcare Foundation, Regional Health Assessment Report, 2010). In our less populated counties, mortality rates may not be meaningful due to unstable data. Therefore, we are unable to identify any concerning mortality trends, utilizing actual data, for those counties. Incidence and Late Stage Diagnosis Incidence and late stage diagnosis data was provided by the Kansas Cancer Registry and the Missouri Cancer Registry. Both registries compared local data to the Iowa SEER registry in order to obtain expected breast cancer rates (per 100,000) as well as expected number of cases. This is noted in Tables one, two, three and four, which shows 15

16 the local rates and case counts in addition to the 95% confidence intervals which sets a range for expected rates and case counts to fall between. In addition, both registries utilize the standard staging schema for cancer surveillance, i.e.: in situ (confined to originating site), localized (confined to area of the primary tumor), regional (grown beyond original tumor-nearby lymph nodes or tissue), distant (metastasized), and unstaged. Unstaged cancer means there is not enough information to stage the cancer such as the person has passed away or a person who refused diagnostic or treatment procedure. Within the data tables provided below, our target counties are highlighted in yellow. Kansas Incidence Table 1 shows new cases of female invasive breast cancer in Kansas Aggregate data over a 10 year time period was used to stabilize cancer statistics. Since standardized rates are not always meaningful due to a small number of cancer cases and/or small population sizes, the 10 Kansas counties were grouped into four regions, with two counties being large enough to serve as a single region (KCR report to Komen Kansas City, Female Breast Cancer in Northeast Kansas, Nov. 10, 2010). The age-adjusted rates for female breast cancer in the four Kansas counties/regions are similar to that observed in Iowa counties with a similar population size. In addition, the actual reported number of female breast cancer cases is within the 95 percent confidence interval of the expected number of female breast cancers for the region. Therefore, there is no evidence that any of our Kansas counties/regions have a higher age-adjusted rate of female breast cancer or number of cases than what would be expected. (Table 1). Table 1. New Cases of Female Invasive Breast Cancer Expected Kansas Cancer Registry Age-adjusted Incidence Number of Cases Average Kansas Data Total Cases Annual Population Rate 95% C.I. 95% C.I. Johnson 3, , ,392 3,623 Wyandotte 1,011 79, ,074 Region A , Region B 1,006 83, ,069 Region A - Atchison, Brown, Doniphan and Leavenworth Counties Region B - Douglas, Jackson, Jefferson and Miami Counties Source: Kansas Cancer Registry Kansas age-specific population obtained from SEER ( rate per 100,000 persons standardized to the 2000 US standard population. Late Stage Diagnosis- Late stage diagnosis is a key indicator of community breast health. Table 2 shows stages at diagnosis for new cases of invasive female breast cancer in our 10 Kansas 16

17 counties, In general, Johnson County has the highest proportion of female breast cancer diagnosed at a localized stage (65.4%) compared to other regions. The proportion of female breast cancers diagnosed at a distant stage was 6.5 percent in Wyandotte County, which is higher than that observed in other counties. This high percent of distant diagnoses is of concern. (KCR report to Komen Kansas City, Nov. 10, 2010). Table 2. Stages at Diagnosis for New Cases of Invasive Female Breast Cancer in Kansas Counties Localized Regional Distant Unstaged Kansas Cancer Registry All Stages Cases % Cases % Cases % Cases % Johnson 3,506 2, % 1, % % % ,761 1, % % % % ,745 1, % % % % Wyandotte 1, % % % % Region A % % % % Region B 1, % % % % Region A - Atchison, Brown, Doniphan and Leavenworth Counties Region B - Douglas, Jackson, Jefferson and Miami Counties Source: Kansas Cancer Registry Missouri Incidence Table 3 shows new cases of female invasive breast cancer in Missouri Aggregate data over a 10 year time period was used to overcome unstable cancer statistics resulting from small population sizes. Calculation of the expected number of cases was based on the Iowa SEER age-specific average annual invasive cancer incidence rates for (Iowa SEER, 2010; MCR, 2010/2011). Table 3. New Cases of Female Invasive Breast Cancer Missouri Cancer Registry Average Annual Population Age-adjusted Incidence Missouri Data Total Cases Rate 95% C.I. Bates, MO 111 8, Buchanan, MO , Cass, MO , Clay, MO 1, , Jackson, MO 4, , Johnson, MO , Platte, MO , Expected Number of Cases Age-Adjusted Expected Count , , Source: Missouri Cancer Registry Missouri age-specific population obtained from SEER ( rate per 100,000 persons standardized to the 2000 US standard population. The age-adjusted rates for female breast cancer for the seven counties in our Missouri service area have been compared with rates from the IOWA SEER registry. There is no evidence that any of our Missouri counties have a higher age-adjusted rate of female breast cancer than would be expected. This is also supported by the observed number of 17

18 cases compared against the age-adjusted expected counts. The reported numbers of female breast cancer cases are not significantly higher than the expected number of cases for each county with the exception of Clay County. In 2000 and 2001, Clay County experienced significantly high years for breast cancer cases. However, data shows the rates may be stabilizing reducing concerns regarding Clay County (See Figure 3). (Missouri Cancer Registry, 2011). Figure 3. Clay County, MO Female Breast Cancer Incidence Rates Source: Missouri Cancer Registry Late Stage Diagnosis -- Table 4. Stages at Diagnosis for New Cases of Invasive Female Breast Cancer in Missouri Counties Localized Regional Distant Unstaged Missouri Cancer Registry All Stages Cases % Cases % Cases % Cases % Bates, MO % % 5 3.6% % Buchanan, MO % % % % Cass, MO % % % % Clay, MO 1,690 1, % % % % Jackson, MO 5,718 3, % 1, % % % Johnson, MO % % % % Platte, MO % % % % Source: Missouri Cancer Registry Table 4 shows stages at diagnosis for new cases of invasive female breast cancer in our 7 Missouri counties, In general, Clay County has the highest proportion of female breast cancer diagnosed at a localized stage (63.8 percent). The proportion of female breast cancers diagnosed at a distant stage was 5.7 percent in Buchanan County and five percent in Jackson County, which are slightly higher than that observed in other counties. The late stage diagnosis in both of these counties is concerning. Screening Percentages Results from a recent study presented at the 2010 San Antonio Breast Cancer Symposium identified that only approximately 47 percent of women aged years, 54 percent of women aged years and 45 percent of women aged 65 and older reported receiving an annual mammogram. This study utilized actual mammography 18

19 screening rates over a three year period for women who had employee-provided insurance or coverage through Medicare (Susan G. Komen for the Cure, 2011). Although data was not collected for women without insurance, it is likely that women without access to insurance have screening rates lower than those reported above. Women who are uninsured, low income, and Hispanic/Latina, African American, Asian, and American Indian/Alaskan Native are much less likely to obtain a yearly mammogram than insured, higher-income, white women. Further, women who do not receive regular mammograms are less likely to have their breast cancer detected early. Thus, nonwhite, low-income women who lack health insurance are more likely to have their breast cancers detected at a later stage where treatment options are limited and less effective (American Cancer Society, 2008). Screening rates across our 17 county service area were gathered by Thomson Reuters Real data was not available for screening rates; therefore, it is important to remember that screening data for the service area is relayed as an estimate. Locally, our service area shows an estimated average of 62 percent of all women over the age of 40 receiving an annual mammogram. The Thomson Reuters 2009 estimates show eight counties in our service area had significantly lower one-year mammography screening rates for women age 40+ as compared to the average for the entire Komen Kansas City service area. (Figure 4). The lowest screening rates for our service area can be found in the following Kansas counties: Atchison (58.6 percent), Brown (58.9 percent), Doniphan (58.6 percent), Jackson (60.4 percent), and Wyandotte (60.9 percent) and in the following Missouri counties: Bates (58.4 percent), Buchanan (61.8 percent), and Johnson (60.4 percent) (Thomson Reuters 2009). Figure 4. Women 40+ Receiving Mammography Screening in Past 12 Months, Compared to Entire Service Area. Source: Thomson Reuters 2009, Estimates Key Findings. In general, certain populations can be considered medically vulnerable because of susceptibility to illness or injury or because they have financial, cultural or physical difficulties in accessing health care. These vulnerable populations include minorities, those who are linguistically isolated, those who are homeless, and those who are undocumented. An especially medically vulnerable population are those individuals 19

20 living in poverty. (REACH Healthcare Foundation, Regional Health Assessment Report, 2010). Communities of Interest Key Demographic Variables of the Population According to the U.S. Census Bureau (2010), our service area population is estimated to be 83.5 percent Caucasian, 11.6 percent African American, 2.3 percent Asian, and less than 1 percent Pacific Islander /Hawaiian and American Indian and/or Alaskan Native. Census data estimates that 7.2 percent of the current service area population identifies itself as Hispanic. Some residents identify with more than one race. English is a second language for 7.3 percent of our population and 10.9 percent of our overall population has an annual income below the federal poverty level (U.S. Census Bureau, 2010). In order to be most effective, Komen Kansas City has chosen target communities to focus efforts on for the upcoming two years (see Figure 3). Target communities are those whose cumulative key indicators reflect vulnerable populations likely at risk for experiencing gaps in breast health services and/or barriers in access to care. Our key indicators include: Below Average Median Income Above Average Unemployment Rate and Above Average Poverty Levels Above Average Percent Uninsured and Below Average Access to Health Care Percent Minority Population & Age Breakdown (Hispanic, African American) Female Breast Cancer Incidence & Mortality Rate (per 100,000 pop.) Below Average Mammogram Screening Rates Stage at Diagnosis for New Cases of Invasive Female Breast Cancer Figure 5 shows Komen Kansas City s Service Area with selected target counties highlighted in pink. Figure 5. Greater Kansas City Service Area: Target Counties. 20

21 Kansas: Wyandotte County Region A: Atchison, Brown, Doniphan and Leavenworth Counties Missouri: Bates County Buchanan County Jackson County Conclusions Wyandotte County, KS By every definition of persons considered medically vulnerable, a high percentage of Wyandotte County residents qualify. The life expectancy in Wyandotte County is lower than the national average, and the percent of people in fair or poor health is higher than the national average (17.6 percent vs percent). The percent of people who are uninsured is remarkably higher than the national average (22.9 percent vs percent) while the median household income is significantly lower than the national average ($38,031 vs. $52,029). In addition, a majority (52.8 percent) of the overall population is minority (REACH Healthcare Foundation, Regional Health Assessment Report, 2010; U.S. Census Bureau, 2010). Of greatest concern in Wyandotte County is that the poverty trend has increased 17 percent since 2000 (% increase at/under 100% FPL ). Today, percent of the population in Wyandotte County live at 100 percent of the federal poverty level (FPL) and percent live at 200 percent of the federal poverty level (REACH Healthcare Foundation, Regional Health Assessment Report, 2010). In addition to the above demographics, screening rates in Wyandotte County are identified as lower than average across the service population (60.9 percent) and the distant staging percentage is higher than average for the service area (6.5 percent). Staging data shows the proportion of female breast cancers diagnosed at a distant stage in Wyandotte County to be higher than that observed in other Kansas counties. As we observe a trend of increasing poverty in Wyandotte County, combined with low screening rates and higher than average distant staging, it is not surprising the female breast cancer mortality rate in Wyandotte County is higher than the national average (26.7 vs. 25.3) (REACH Healthcare Foundation, Regional Health Assessment Report, 2010; Thomson Reuters 2009; Kansas Caner Registry report to Komen Kansas City, Nov. 10, 2010). Jackson County, MO Jackson County, Missouri s population is growing, keeping up with the overall growth trend in the United States (REACH Healthcare Foundation, Regional Health Assessment Report, 2010; U.S. Census Bureau, 2010). By nearly every definition of persons considered medically vulnerable, a high percentage of Jackson County residents qualify. The life expectancy in Jackson County is lower than the national average (75.2 vs. 76.5). The median household income is lower than the national average ($47,264 vs. $52,029). In addition, a very significant percent of the 21

22 overall population is minority (REACH Healthcare Foundation, Regional Health Assessment Report, 2010; U.S. Census Bureau, 2010). Like Wyandotte County, KS, of greatest concern in Jackson County, MO is that the poverty trend has increased a staggering 25 percent since 2000 (% increase at/under 100% FPL ). Today, percent of the population in Jackson County lives at 100 percent of the federal poverty level and percent live at 200 percent of the federal poverty level (REACH Healthcare Foundation, Regional Health Assessment Report, 2010). A concerning five percent of breast cancer cases are diagnosed at a distant stage in Jackson County. As we observe a poverty trend that is increasing at an alarming pace, and in light of the fact that individuals living in poverty are especially medically vulnerable, it is not surprising the female breast cancer mortality rate in Jackson County is higher than the national average (27.8 vs. 25.3) (REACH Healthcare Foundation, Regional Health Assessment Report, 2010). Region A, Kansas Region A consists of Atchison, Brown, Doniphan, and Leavenworth Counties in Kansas which are located in Northeast Kansas. These counties have been grouped together in order to obtain stable incident and staging data. Region A has a population of 109,239 people and makes up 4.8 percent of the service area (Kansas Cancer Registry, 2010/2011; U.S. Census Bureau, 2010). The counties in Region A have an average median household income of $46,051 which is lower than the state median household income of $50,174. The unemployment rate is seven percent (Kansas state average 6.6 percent) and 12.5 percent of the population is living in poverty. In addition, Brown County, Kansas has an American Indian and/or Alaska Native rate of 9.2 percent, over nine times the state average (U.S. Census Bureau, 2010; Kansas Department of Labor, 2010). Three of the four counties in Region A have noticeable lower than average estimated screening rates (Atchison, Brown, and Doniphan) (Thomson Reuters 2009). The location of these counties in comparison to the metropolitan area may make access to health services more complex. The rate of primary care physicians (PCP) for Region A averages 59.5 per 100,000 in comparison to the state rate of 119 per 100,000. Although there is no indication of a health professional shortage in these counties, their provider numbers are lower than the statewide average and those counties closer to the immediate metropolitan area (US Department of Health and Human Services: Community Health Status Indicators, 2008). Bates County, MO Bates County, Missouri is located at the southern edge of the service area. Bates County has a population of 16,761 people and is approximately one percent of our service area (U.S. Census Bureau, 2010). Bates County has an average median household income of $36,904 in comparison to the state median household income 22

23 of $46, percent of Bates County residents are unemployed and 16.4 percent are living below the federal poverty level. Both the poverty and unemployment rates in this county are higher than the state and U.S. averages. Bates County also has the lowest median household income, the second highest unemployment rate, and the third highest number of residents living below poverty in the entire service area (U.S. Census Bureau, 2010; Kansas Department of Labor, 2010). Slightly higher than the Missouri state average, 14.4 percent of individuals living in Bates County are uninsured. Bates County does have a Health Professional Shortage with a Primary Care Physician (PCP) rate of only 17.6 per 100,000 people, compared to a statewide rate of 115 and a U.S. average of 126 (US Department of Health and Human Services: Community Health Status Indicators, 2008). With the information known, it is not surprising that screening rates in Bates County are the lowest in the entire service area. It is estimated only 58.4 percent of women age 40+ receive an annual mammogram; however, 58.7 percent of breast cancer cases are diagnosed at the localized stage and only 3.6 percent of cases are diagnosed at distant stages. It is notable, though, that a higher than average percentage of breast cancer cases are unstaged in Bates County which may make distant staging rates higher than they appear (Thomson Reuters 2009; Missouri Cancer Registry, 2010/2011). Buchanan County, MO Buchanan County, Missouri is located in northwest Missouri U.S. Census data estimates that Buchanan County has a population of 89,856 people, making up nearly four percent of our service area. Buchanan County has a four percent Hispanic population which is higher than the state average. The median household income of Buchanan County is $42,269, lower than the Missouri average. 15 percent of residents are living below the federal poverty level compared to 13.5 percent statewide. Buchanan County has the 4th highest percentage of residents living below poverty in our 17 county service area (U.S. Census Bureau, 2010; Missouri Department of Labor, 2010). Buchanan County has a lower than average estimated screening rate of 61.8 percent and a higher than average distant stage diagnosis for our service area at 5.7 percent, the second highest in our service area. (Thomson Reuters 2009; Missouri Cancer Registry, 2010/2011). In summary, all of our target counties and/or regions reflect multiple cumulative risk factors compared to the average in the service area and/or state. These include a combination of above average female breast cancer mortality rates, high percent minority populations, high poverty levels with the largest counties trending upward, high uninsured rates and low screening rates. Estimated failure to screen rates (percent no mammogram in the last 12 months, female 40+) in Atchison, Brown, Doniphan and Wyandotte counties in Kansas and Bates and Buchanan counties in Missouri are all above (i.e. lower than) the average for the Komen Kansas City service area (Thomson Reuters 2009). 23