Colorectal Cancer Survivorshipin Rural Communities: Assessment and

Plan Development

April 19, 2007

Eugene J. Lengerich, VMD, MS

Associate ProfessorEpidemiology 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 The Appalachia Community Cancer NetworkNetworkSupported by the National Cancer Institute’sSupported by the National Cancer Institute’sCenter to Reduce Cancer Health DisparitiesCenter to Reduce Cancer Health Disparities

1 U01 CA114622 (2005-2010)1 U01 CA114622 (2005-2010)

ACCN - ACCN - Appalachian Appalachian

Areas of 7 States Areas of 7 States (KY, MD, NY, OH, (KY, MD, NY, OH,

PA, VA, WV)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 Pennsylvania14 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 plansEquip

• 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

ASSESSMENTKnowledge and beliefs;

Survivorship Plans and Resource Directories

Disseminate, Implement, and

Research

Technical Assistance from NACN / PSCI / ACS

Study Schema

ASSESSMENTPublic health and

survivorship knowledge and beliefs

Revised 5/11/06

PRECEDE-PROCEEDPRECEDE-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 ResultsPreliminary 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 EducatorsHospital AdministratorsSurvivors

Completed– 11 coalitions and 3 hospitals (93.3%)– 16 of 32 individuals at initial conference returned to

second conference (50.0%)

Increase in Correct ResponsesPre-Training versus Immediate Post-Training

Knowledge … Total

Pre-TrainingImmediate

Post-Training

p-value1N (%) N (%)

that PRECEED-PROCEED is a community health planning model2

30 8 (26.7) 25 (83.3) <0.0001

that an enabling factor is an internal or external condition in health promotion theory

25 13 (52.0) 20 (80.0) 0.0391

of the sponsors of National Action Plan 28 1 (3.6) 11 (39.3) 0.0020

of the percentage of U.S. cancer survivors had CRC

28 12 (42.9) 25 (89.3) 0.0010

of the point at which CRC survivorship begins

28 21 (75.0) 27 (96.4) 0.0313

of the benefit of laparotomies as a treatment for CRC

24 9 (37.5) 19 (79.2) 0.0063

that memory problems are not common in CRC survivors2 27 14 (51.9) 23 (85.2) 0.0117

1McNemar’s Test. 2Statistically significant increase at long-term assessment

Assessment MethodsUsed by Coalitions/Hospitals

Number Percentage

Resource Assessment 14 100.0

Cancer Data Review 14 100.0

Interviews of Survivors 12 85.7

Survey of Survivors, Community, Providers 12 85.7

Coalition/Partnership Discussion 11 78.6

Key Informant Interviews 11 78.6

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 Resourcesin 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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