Stephenie Kennedy

Disparities in Underserved White Populations: The Case of Cancer-Related Disparities in Appalachia

There are meaningful cancer-related disparities in the Appalachian region of the U.S. To address these disparities, the Appalachia Community Cancer Network (ACCN), a collaboration of investigators and community partners in five states (Kentucky, Ohio, Pennsylvania, Virginia, and West Virginia), is involved in increasing cancer education and awareness, conducting community-based participatory research (CBPR), and creating mentorship and training opportunities. The primary objective of this paper is to describe cancer-related disparities in the Appalachian region of the U.S. as an example of the disparities experienced by underserved, predominantly white, rural populations, and to describe ACCN activities designed to intervene regarding these disparities. An ACCN overview/history and the diverse activities of ACCN-participating states are presented in an effort to suggest potential useful strategies for working to reduce health-related disparities in underserved white populations. Strengths that have emerged from the ACCN approach (e.g., innovative collaborations, long-standing established networks) and remaining challenges (e.g., difficulties with continually changing communities, scarce resources) are described. Important recommendations that have emerged from the ACCN are also presented, including the value of allowing communities to lead CBPR efforts. Characteristics of the community-based work of the ACCN provide a framework for reducing health-related disparities in Appalachia and in other underserved white and rural populations.

Human papillomavirus (HPV) vaccine availability, recommendations, cost, and policies among health departments in seven Appalachian states.

Telephone interviews of health department personnel in six states and review of an immunization database from one state were conducted to assess human papillomavirus (HPV) vaccine availability, recommendations, cost, policies, and educational materials in health departments in seven Appalachian states. Most (99.1%) health departments (n=234) reported receiving patient requests for the HPV vaccine, and only two (1%) health departments reported that they did not provide the vaccine for patients. HPV vaccine supply was reported to not meet the demand in 10.5% (24/228) of health departments due to high costs. Level (state, region, county) at which policy about the HPV vaccine was determined, vaccine recommendations, costs, and available educational materials varied among states. This study documented variation in vaccine availability, recommendations, cost, policies, and educational materials in Appalachian health departments that could significantly affect vaccine distribution. Findings highlight the need for more comprehensive and consistent policies that maximize accessibility of the HPV vaccine to women, especially those in underserved areas.

Public Education and Targeted Outreach to Underserved Women Through the National Breast and Cervical Cancer Early Detection Program

The National Breast and Cervical Cancer Early Detection Program (NBCCEDP) was established to provide low‐income, uninsured, and underinsured women access to cancer screening and diagnostic services with the goal of increasing the early detection and prevention of breast and cervical cancer. Although this is a valuable resource for women who might not have the means to get screened otherwise, providing services at no cost, by itself, does not guarantee uptake of screening services. Public education and targeted outreach facilitate the critical link between public service programs and the communities they serve. The purpose of public education and outreach in the NBCCEDP is to increase the number of women who use breast and cervical cancer screening services by raising awareness, providing education, addressing barriers, and motivating women to complete screening exams and follow‐up. Effective strategies focus on helping to remove structural, physical, interpersonal, financial, and cultural barriers; educate women about the importance of screening and inform women about the services available to them. This article provides an overview of the importance of public education and targeted outreach activities for cancer screening through community‐based programs including examples from NBCCEDP grantees that highlight successes, challenges, and solutions, encountered when conducting these types of interventions. Cancer 2014;120(16 suppl):2591‐6.

Study design, intervention, and baseline characteristics of a group randomized trial involving a faith-based healthy eating and physical activity intervention (Walk by Faith) to reduce weight and cancer risk among overweight and obese Appalachian adults

BACKGROUND Increased prevalence of overweight and obesity among Appalachian residents may contribute to increased cancer rates in this region. This manuscript describes the design, components, and participant baseline characteristics of a faith-based study to decrease overweight and obesity among Appalachian residents. METHODS A group randomized study design was used to assign 13 churches to an intervention to reduce overweight and obesity (Walk by Faith) and 15 churches to a cancer screening intervention (Ribbons of Faith). Church members with a body mass index (BMI) ?25 were recruited from these churches in Appalachian counties in five states to participate in the study. A standard protocol was used to measure participant characteristics at baseline. The same protocol will be followed to obtain measurements after completion of the active intervention phase (12months) and the sustainability phase (24months). Primary outcome is change in BMI from baseline to 12months. Secondary outcomes include changes in blood pressure, waist-to-hip ratio, and fruit and vegetable consumption, as well as intervention sustainability. RESULTS Church members (n=664) from 28 churches enrolled in the study. At baseline 64.3% of the participants were obese (BMI?30), less than half (41.6%) reported regular exercise, and 85.5% reported consuming less than 5 servings of fruits and vegetables per day. CONCLUSIONS Church members recruited to participate in a faith-based study across the Appalachian region reported high rates of unhealthy behaviors. We have demonstrated the feasibility of developing and recruiting participants to a faith-based intervention aimed at improving diet and increasing exercise among underserved populations.

Abstract A37: A group randomized trial to reduce obesity among Appalachian church members: The Walk by Faith study

Purpose: Appalachia is a rural, socioeconomically disadvantaged region with limited access to preventive health services. The Appalachia Community Cancer Network (ACCN) is an NCI-funded research initiative that collaborates with community-based cancer coalitions and other community groups to increase awareness, provide education, and promote cancer prevention. Using Community Based Participatory Research (CBPR) principles, ACCN tested a program to reduce overweight and obesity, a modifiable risk factor for cancer, by working with churches, an important institution in Appalachia. The primary outcome of this study was change in weight from baseline to twelve months. The goal of this report is to present trial results for weight reduction at 12 months. Methods: The study was a group randomized trial where county or group of counties in five Appalachian states (Ohio, Pennsylvania, Kentucky, Virginia, and West Virginia) were randomly assigned to receive either an intervention program on diet and physical activity titled “Walk by Faith” (WbF) or an educational program focused on cancer screening titled “Ribbons of Faith” (RoF). Participants attended an information session, provided informed consent, were screened for eligibility, and completed biometric measurements including height, weight, blood pressure, and waist and hip circumference. Biometric measurements were also collected at 12 and 24 months. Participants reported on demographic, tobacco use, cancer and cancer screening history, healthcare access, Appalachian identity, physical activity and diet-related information at baseline and annually for two years. Church members were eligible if they were 18 years of age or older, overweight, willing to use a computer, and medically cleared to participate. Ohio and Pennsylvania sites enrolled participants from January through September in 2012, while the other three states enrolled participants from February to November 2013. Participants in the WbF program received pedometers, monthly education sessions focused on healthy eating and exercise, healthy eating guide books, physical activity journals, and access to a website (Faithfully Living Well) customized for each church and designed to assist participants to overcome barriers to healthy eating and physical activity, track their weight and activities, and access health-related articles and healthy recipes. RoF participants were invited to attend monthly educational sessions about cancer and cancer screening. Results: Of 866 interested parishioners at 28 churches, 159 (18%) were ineligible; of the 707 eligible individuals who completed screening, 663 (94%) were enrolled. Participants were predominantly female (71%) with average BMI of 33.2; 42% reported regular exercise, 25% had a high school education or lower, and 26% had household incomes Conclusions: Overall, the WbF program facilitated weight loss in mainly male participants, and all participants improved fruit and vegetable intake. If participants were engaged in WbF activities, they lost more weight; thus, ways to improve participation should be explored. These results lend support to church-based intervention programs for underserved rural communities. Citation Format: Ryan Baltic, Electra D. Paskett, Samuel Lesko, Stephenie Kennedy, Gene Lengerich, Karen A. Roberto, Nancy Schoenberg, Gregory Young, Mark Dignan. A group randomized trial to reduce obesity among Appalachian church members: The Walk by Faith study. [abstract]. In: Proceedings of the Eighth AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 13-16, 2015; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2016;25(3 Suppl):Abstract nr A37.

Abstract PR01: Development and implementation of a church-based eHealth program to reduce obesity in Appalachian adults

Purpose: Significant disparities in incidence and mortality for cancers related to obesity have been identified in Appalachian adults compared to the entire US. The Appalachia Community Cancer Network (ACCN) partnered with churches in Kentucky, Ohio, Virginia, West Virginia, and Pennsylvania to conduct a community-based participatory research program with a goal of reducing obesity through environmental and individual change. The primary outcome is change in body mass index (BMI) from baseline to twelve months. Secondary outcomes include change in physical activity level, blood pressure and diet. The focus of this paper is on the development and implementation of the intervention program in thirteen churches across five states, maintenance of the program during the sustainability phase, and preliminary feedback on the intervention from participants. Methods: The intervention program, Walk by Faith (WbF) was developed with input from focus groups and community advisory boards. The main component is the Faithfully Living Well (FLW) website that allows participants to upload steps from pedometers, track progress in walking and weight, health-related articles, recipes, forums, albums, and a rewards page – all tailored to each county. Comments from participants are recorded both on FLW and via email or paper. Comments were separated by phase and classified as either positive, neutral, requests for additional support, or reporting issues. Ohio and Pennsylvania acted as a vanguard group, recruiting overweight adults one year prior to the other three states. Participants completed food frequency and physical activity questionnaires, biometric measurements (height, weight, blood pressure, resting heart rate, body image, waist and hip), and survey questions regarding their health behaviors, social support, and cancer history. Enrolled participants received Omron pedometers, string bags, CalorieKing pocket guides and food journals, and access to the FLW website. Monthly education sessions were held, as were church walks, physical activity and cooking classes, and a celebration event at the end of the 12-month intervention. Interventionists were employed to complete quarterly wellness plans with participants and assist with website use. Volunteer church navigators (CNs) within the churches coordinated monthly events with the help of staff. The sustainability phase started at the end of the 12-month period, when study staff distanced themselves from the program and CNs took over staff roles. Activities are suggested to CNs, CNs and participants decide type and frequency of activities, and CNs report on activities, attendance, and reception of events back to study staff. Results: 429 intervention participants were enrolled from 13 churches. To date, 11 churches with 399 participants have moved to the sustainability phase. Participants have reported positive experiences and health benefits through voluntarily submitted success stories and comments on monthly process evaluations. Participants reported weight loss, increased fruit, vegetable and water intake, reduction in soda intake, and discontinuation of medications. Of the 194 comments received to date, 121 (62%) were positive comments about the program. The most common positive comments were about the quality of presentations (44%), materials and overall program (39%), and improved health status (7%). 15 comments (8%) requested additional support or communication from program leaders. This abstract was also presented as Poster A14. Citation Format: Ryan Baltic, Electra D. Paskett, Samuel Lesko, Stephenie Kennedy, Gene Lengerich, Karen Roberto, Nancy Schoenberg, Mark Dignan. Development and implementation of a church-based eHealth program to reduce obesity in Appalachian adults. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr PR01.

Abstract A34: Church-based recruitment and retention of Appalachian adults in an eHealth program to reduce obesity

Purpose: Appalachia is a socioeconomically-disadvantaged region with limited preventive health services. The ACCN is a NCI-funded research initiative that collaborates with community-based cancer coalitions to increase awareness, provide education, and promote cancer prevention. Using CBPR principles, ACCN researchers are testing in a group randomized trial a faith-based program focused on obesity, a modifiable risk factor for cancer. The primary outcome is change in body mass index from baseline to twelve months. Secondary outcomes are changes in physical activity, diet and blood pressure, and the maintenance of the intervention effect during a sustainability period. This paper focuses on participant recruitment to this faith-based program and retention of enrolled participants throughout the 12-month intervention phase. Methods: The project employed CBPR strategies to recruit participants following principles put forth in the Accrual to Clinical Trials (ACT) Framework. The program is based on Social Cognitive Theory and the Transtheoretical Model. The research team includes ACCN, Viocare, Inc., community coalitions, community members, and churches. Community coalitions assisted in identifying churches and designing educational sessions. Participants were recruited through bulletins and announcements from the pulpit. Individuals attended an information/screening session conducted by regional and local staff, or completed a private screening with local staff. In order to keep participants engaged in the program throughout the 12-month intervention phase, education sessions were held monthly and included activities, games, trivia, healthy snacks, and prizes. Gift cards were given to all participants who completed 12-month outcome screenings. Results: As of 8/31/2013, 22 churches have enrolled into the study. 715 church members were screened. Of those, 606 (84.8%) were determined to be eligible, and 566 (93.4%) of those eligible enrolled as participants. Main reasons for ineligibility included BMI Conclusion: Congregation size most significantly limited recruitment in that it was more difficult to recruit at smaller churches. This may be avoided by discussing congregation size and interest with church leaders before selecting churches. Geographical barriers in rural Appalachia impacted participant recruitment and retention in some churches, but assistance from church navigators and field staff helped to abate this. Distrust of outsiders, a common characteristic in Appalachia, slowed recruitment, but regional staff presence at church and community events supported successful recruitment. Recruitment strategies will continue to be modified as accrual is completed in Fall 2013. Although the intervention phase is ongoing in the majority of the churches, it has been observed that motivated and engaged church navigators and leaders positively impact participant involvement. Citation Format: Ryan Baltic, Electra D. Paskett, Stephenie Kennedy, Gene Lengerich, Karen Roberto, Nancy Schoenberg, Samuel Lesko, Mark Dignan. Church-based recruitment and retention of Appalachian adults in an eHealth program to reduce obesity. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr A34. doi:10.1158/1538-7755.DISP13-A34

Abstract B83: Factors influencing adherence to mammography screening guidelines in Appalachian women participating in a mobile mammography program

The objectives of this study were to evaluate the characteristics (demographic, access to care, health-related behavioral, self and family medical history, psychosocial) of women age 40 years and above who participated in a mobile mammography screening program conducted throughout West Virginia (WV) to determine the factors influencing their self-reported adherence to mammography screening guidelines. Data were analyzed using the Andersen Behavioral Model of Healthcare Utilization framework to determine the factors associated with adherence to mammography screening guidelines in these women. Of the 686 women included in the analysis, 46.2% reported having had a mammogram in the past 2 years. Bivariate analyses showed predisposing factors such as older age and unemployed status, visit to a obstetrician/gynecologist (OB/GYN) in the past year (an enabling factor) and need-related factors such as having a family history of breast cancer (BC), having had breast problems in the past, having had breast biopsy in the past, having had a Pap test in past 2 years, and having had all the screenings for cholesterol, blood glucose, bone mineral density and high blood pressure in past 2 years to be significant predictors of self-reported adherence to mammography guidelines. In the final model, being above 50 years (OR = 2.132), being morbidly obese (OR = 2.358), having BC-related events and low knowledge about mammography were significant predictors of self-reported adherence. Breast cancer related events seem to be associated with mammography screening adherence in this rural Appalachian population. Increasing adherence to mammography screening may require targeted, community-based educational interventions that precede and complement visits by the mobile mammography unit.