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

Outline Background Methods Preliminary Results Limitations, Discussion, and Acknowledgements

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

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

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

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

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

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

Methods

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)

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

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

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

Preliminary Results

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%)

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 (26.7)25 (83.3)< that an enabling factor is an internal or external condition in health promotion theory 2513 (52.0)20 (80.0) of the sponsors of National Action Plan281 (3.6)11 (39.3) of the percentage of U.S. cancer survivors had CRC 2812 (42.9)25 (89.3) of the point at which CRC survivorship begins 2821 (75.0)27 (96.4) of the benefit of laparotomies as a treatment for CRC 249 (37.5)19 (79.2) that memory problems are not common in CRC survivors (51.9)23 (85.2) McNemar’s Test. 2 Statistically significant increase at long-term assessment

Assessment Methods Used by Coalitions/Hospitals NumberPercentage Resource Assessment Cancer Data Review Interviews of Survivors Survey of Survivors, Community, Providers Coalition/Partnership Discussion Key Informant Interviews1178.6

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%)

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%)

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%)

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

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

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

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)

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

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