1. Colorectal Cancer Survivorship in Rural Communities: Assessment and Plan Development April 19, 2007 Eugene J. Lengerich, VMD, MS Associate Professor Epidemiology Division, Department of Public Health Sciences Department of Health Policy and Administration Penn State University Director, Community Outreach and Education Penn State Cancer Institute

2. Outline Background Methods Preliminary Results Limitations, Discussion, and Acknowledgements

3. The Appalachia Community Cancer Network Supported by the National Cancer Institute’s Center to Reduce Cancer Health Disparities 1 U01 CA114622 (2005-2010) ACCN - Appalachian Areas of 7 States (KY, MD, NY, OH, PA, VA, WV)

5. Background National Guidance Lance Armstrong Foundation and Centers for Disease Control and Prevention A National Action Plan for Cancer Survivorship: Advancing Public Health Strategies Institute of Medicine From Cancer Patient to Cancer Survivor: Lost in Transition President’s Cancer Panel Living Beyond Cancer: Finding a New Balance State Comprehensive Cancer Control Pennsylvania New York

6. Northern Appalachia Cancer Network, A Region of the Appalachia Community Cancer Network Setting Appalachia 52 Counties in Pennsylvania 14 Counties in New York Largely rural Increased poverty Limited access to health care Began in 1992 Approach Community-based participatory research (CBPR) Evidence-based strategies Advisory Committee Academic, state (PA and NY), professional and community members

7. 2006 Community Planning Grant from the Lance Armstrong Foundation with support from the Penn State Cancer Institute Objectives Facilitate CRC screening by coalitions and partnerships Assist coalitions and partnerships to improve CRC survivorship Prepare for community-based participatory research in CRC survivorship

8. Specific Aims Increase the CRC survivorship-related knowledge and beliefs of teams of three members from each of six local cancer coalitions or partnerships Create a local CRC survivorship plan, including a resource directory, to address local barriers and enhance CRC survivorship in the communities represented by the six teams

9. Significance Test a local approach to complement national and state cancer control plans Equip rural coalitions and partnerships in CRC survivorship (and screening) Enable community-based participatory research on CRC survivorship in rural communities

10. Methods

11. Design Design: Pre-post, multi-level, community intervention study CBPR approach Outcomes: Individual-level: Knowledge and beliefs in public health and CRC-survivorship among individual members of coalitions and partnerships Community-level: Presence and content of community plans and resource directories for CRC survivorship Analysis Change in knowledge and beliefs – McNemar’s test (p<0.05) Content analysis by multiple reviewers (n=3)

12. Recruit and Prepare (Proposed 6 coalitions) Train on Colorectal Cancer Survivorship and Process for Plan Development (Conference 1: May 2006) Present CRC Survivorship Plans and Resource Directory (Conference 2: October 2006) Assess Barriers & Needs; Develop Plan ASSESSMENT Knowledge and beliefs; Survivorship Plans and Resource Directories Disseminate, Implement, and Research Technical Assistance from NACN / PSCI / ACS Study Schema ASSESSMENT Public health and survivorship knowledge and beliefs Revised 5/11/06

13. PRECEDE-PROCEED Planning Model Starts with outcomes and works back to strategies Assessment= PRECEDE Community Intervention= PROCEED

14. Possible Assessment Methods Coalition/Hospital Discussions Key-informant interviews Survivor interviews Community forum Focus groups Survey

15. Preliminary Results

16. Participation Recruited – –11 coalitions (8 in PA; 3 in NY) and 4 hospitals (all in PA) – –32 individuals at initial conference (range 1-4 per coalition/hospital) MD’s; RN’s; Health Educators Hospital Administrators Survivors Completed – –11 coalitions and 3 hospitals (93.3%) – –16 of 32 individuals at initial conference returned to second conference (50.0%)

17. Increase in Correct Responses Pre-Training versus Immediate Post-Training Knowledge …Total Pre-Training Immediate Post-Training p-value 1 N (%) that PRECEED-PROCEED is a community health planning model 2 308 (26.7)25 (83.3)<0.0001 that an enabling factor is an internal or external condition in health promotion theory 2513 (52.0)20 (80.0)0.0391 of the sponsors of National Action Plan281 (3.6)11 (39.3)0.0020 of the percentage of U.S. cancer survivors had CRC 2812 (42.9)25 (89.3)0.0010 of the point at which CRC survivorship begins 2821 (75.0)27 (96.4)0.0313 of the benefit of laparotomies as a treatment for CRC 249 (37.5)19 (79.2)0.0063 that memory problems are not common in CRC survivors 2 2714 (51.9)23 (85.2)0.0117 1 McNemar’s Test. 2 Statistically significant increase at long-term assessment

18. Assessment Methods Used by Coalitions/Hospitals NumberPercentage Resource Assessment14100.0 Cancer Data Review14100.0 Interviews of Survivors1285.7 Survey of Survivors, Community, Providers1285.7 Coalition/Partnership Discussion1178.6 Key Informant Interviews1178.6

19. Community Barriers to CRC Survivorship Lack of transportation (n=11; 79%) Lack of psychosocial care (n=8; 57%) Low level of knowledge of community information and resources (n=7; 50%) Lack of ability to pay and coverage with health insurance (n=7; 50%) Lack of access to medical/surgical care (n=5; 36%)

20. Previously Unknown Resources in the Community Psychosocial care (n=10; 71%) Medical/surgical care (n=4; 29%) Transportation (n=3; 21%) Financial and insurance assistance (n=3; 21%)

21. Contents of the Plans Public knowledge of community resources (n=13; 93%) Public access to community resources (n=8; 57%) Public knowledge about CRC treatment and side effects (n=5; 36%) Payment/insurance for CRC treatment and care (n=4; 29%) Public knowledge about screening guidelines (n=4; 29%) Provider knowledge about screening guidelines (n=3; 21%) Access to psychosocial care for CRC (n=3; 21%)

22. Posters and Abstracts At The Third Annual Summit of the Pennsylvania Cancer Control Consortium Posters Coalition for People Against Cancer (CPAC) (Clearfield County) Indiana County Cancer Coalition Abstracts –Elk County Cancer and Tobacco Education Coalition –Lawrence County Cancer Coalition –York Cancer Center

23. Limitations Reliance upon donated time and resources Capacity and process measures Assessment methods were not mandated CRC survivorship issues were broadened by some participants to be general cancer survivorship issues

24. Summary Surpassed aims, with a high response rate Increased knowledge of key community members Conducted 14 community assessments Identified barriers and previously unknown resources Developed community plans and resource directories Employed methods of CBPR and PRECEDE-PROCEED Linked CRC screening to survivorship issues

25. CRC Survivorship Coalitions and Hospitals ACTION Health Colorectal Cancer Task Force (Columbia, Montour, Northumberland, Snyder, and Union Counties) (PA) Chautauqua County Partners for Prevention (NY) Coalition for People Against Cancer (CPAC) (Clearfield County) (PA) Crawford County Cancer Coalition (PA) Delaware County Cancer Coalition (NY) Elk County Cancer and Tobacco Education Coalition (PA) Greene County Cancer Coalition (PA) Indiana County Cancer Coalition (PA) Lancaster General Hospital (PA) Lawrence County Cancer Coalition (PA) Mount Nittany Medical Center (PA) Wellness Council of the Southern Tier (NY) Wyoming County Cancer/Tobacco Coalition (PA) York Cancer Center (PA)

26. CRC Survivorship Planning Committee NACN Regina Allen Marcy Bencivenga Brenda Kluhsman Eugene Lengerich Community Coalitions Marcia Anderson PSCI Community Outreach and Education Diane Sheehan CRC Survivor Mary Beth Miele American Cancer Society Deirdre Weaver Centers for Disease Control and Prevention Laura Zauderer Lance Armstrong Foundation Haley Justice PSCI Survivorship Program Elana Farace PSU Continuing Education Bonnie Bixler

27. References Butterfoss FD, Kegler MC. Toward a comprehensive understanding of community coalitions: moving from practice to theory. In: DiClemente RJ, Crosby RA, Kegler MC, editors. Emerging theories in health promotion practice and research. San Francisco (CA): Jossey-Bass; 2002. p. 157– 93. Green LW, Kreuter MW. CDC’s planned approach to community health as an application of PRECEDE and an inspiration for PROCEED. J Health Educ1992;23(3):140-7. Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-based research: assessing partnership approaches to improve public health. Annu Rev Public Health 1998;19:173-202. Huan B, Wyatt S, Tucker T, Bottorff D, Lengerich E, Hall HI. Cancer death rates – Appalachia, 1994- 98. 1994-1998. MMWR 2002;51(24):527-9. Klushman BC, Bencivenga M, Ward AJ, Lehman E, Lengerich EJ. Initiatives of eleven rural Appalachian cancer coalitions in Pennsylvania and New York. Prev Chronic Dis. [serial online] 2006 Oct. Available from: http://www.cdc.gov/pcd/issues/2006/oct/06_0045.htm.http://www.cdc.gov/pcd/issues/2006/oct/06_0045.htm Lengerich EJ, Tucker T, Powell RK, Colsher P, Lehman E, Ward AJ, Siedlecki JC, Wyatt SW. Cancer incidence in Kentucky, Pennsylvania, and West Virginia: Disparities in Appalachia. J Rural Health 2005:21(1);39-47. Lengerich EJ, Wyatt SJ, Rubio A, Beaulieu J, Coyne CA, Fleisher L, Ward AJ, Brown PK. The Appalachia Cancer Network: cancer control research among a rural, medically underserved population. J Rural Health 2004:20(2);181-87. Ward AJ, Coffey Kluhsman B, Lengerich EJ, Piccinin AM. The impact of cancer coalitions on the dissemination of colorectal cancer materials to community organizations in rural Appalachia. Prev Chronic Dis [serial online] 2006 Apr. Available from: http://www.cdc.gov/pcd/issues/2006/apr/05_0087.htm. http://www.cdc.gov/pcd/issues/2006/apr/05_0087.htm