1. Reducing Cancer Burden Through Community-Based Research September 28, 2007 Eugene J. Lengerich, VMD, MS Associate Professor Department of Public Health Sciences Department of Health Policy and Administration The Pennsylvania State University Director, Community Outreach and Education Penn State Cancer Institute

2. Objectives Provide an update on ACCN research initiatives (today) Provide an overview of ACCN and NACN Review NACN community-based initiatives Review recent surveillance information

3. Appalachia Community Cancer Network (ACCN)

4. The Appalachia Community Cancer Network Supported by the National Cancer Institute’s Center to Reduce Cancer Health Disparities 1 U01 CA114622 (2005-2010) Appalachian Areas of 7 States KY, MD, NY, OH, PA, VA, WV Principal Investigator Mark Dignan, PhD, MPH University of Kentucky Regional Principal Investigators KY – Nancy Schoenberg OH – Electra Paskett PA – Eugene Lengerich VA – Jim Bohland WV – Pamela Brown Cancer Sites Colorectal Cervical Lung/Tobacco Breast, especially late stage at diagnosis

5. The Appalachia Community Cancer Network Supported by the NCI’s Center to Reduce Cancer Health Disparities 1 U01 CA114622 (2005-2010)

6. Northern Appalachia Cancer Network (NACN)

7. The Northern Appalachia Cancer Network (NACN) A Region of the Appalachia Community Cancer Network A community-academic partnership to develop, test and implement evidence-based interventions intended to reduce the burden of cancer in rural, medically underserved communities of PA and NY Established in 1992 Three primary strategies – –Community-based participatory research with 10 cancer coalitions Among the longest-running network of community cancer coalitions in the U.S. – –Practice-based research with rural primary care providers, specialists, and hospitals – –Surveillance research

8. NACN Advisory Committee Composed of Community Representatives (n=10) and State & Professional Representatives (n=13) Role: – –Advise NACN – –Facilitate community-based participatory research – –Represent coalitions Expectations: – –Meet face-to-face once each year of the five years of the cooperative agreement – –Meet via teleconference in the other three quarters of each year

9. Community Partnerships on the NACN Advisory Committee Action Health Cancer Task Force (PA) Allison Clark – Community health education Nicole Hockenbrock – Community health education Chautauqua County (NY) Partners for Prevention Laurie Adams – Community health and education Coalition for People Against Cancer, Clearfield County (PA) Mary Day – Cancer education and outreach Crawford County Cancer Coalition (PA) Dawn Moshbacher, BA, BSN – Community health Delaware County (NY) Cancer Coalition Jeanne Darling – Rural community education Elk County Cancer Coalition (PA) Paulette Schreiber, CRNP – Health care and cancer screening Greene County Cancer Coalition (PA) Carolyn Wissenbach – Community education and training Indiana County Cancer Coalition (PA) Charlie Shoemaker – Health care administration Lawrence County Cancer Coalition (PA) Marcia S. Anderson -- Adult literacy Wyoming County Cancer/Tobacco Partnership (PA) Valerie Ann Bell, RN, BSN -- Cancer prevention, education, and screening

10. Professional and State Representatives on the NACN Advisory Committee Cancer Education, Outreach, and Policy Julia Bucher, RN, PhD PA Cancer Control Consortium Statewide Education, Training, and Outreach Marilyn Corbin, PhD Associate Director, Penn State Coop. Extension Rural Health Disparities and Health Networks Lisa Davis, MHA Director, PA Office of Rural Health Clinical Trials Education and Training Linda Fleisher, MPH Program Director, NCI CIS (Fox Chase) Cancer Genetics, Tobacco, and Lung Cancer Philip Lazarus, PhD Associate Director, Penn State Cancer Institute Professor, PSU Health Communication Research Roxanne Parrot, PhD Professor, PSU Rural Hospitals and Networks Aileen Galley, ACSW, LSW Administrative Director, Mt. Nittany Medical Center Cancer screening outreach and recruitment Heather LeBlanc, BS NY Department of Health Continuing Education for Health Professionals Luanne Thorndyke, MD Associate Dean, PSU Cancer Screening Services and Rural Health Louann Weil, MPH Director, Cancer Screening, Family Health Services Health Services Research Carol Weisman, PhD Professor, PSU Social Marketing and Health Communication Christy Widman Partnership Program Director, NCI CIS (Roswell Park) Public Health Kathleen Zitka, MPH PA Department of Health

11. Topography: The Northern Appalachia Cancer Network and the Penn State Cancer Institute Pittsburgh Lehigh Valley Hershey Mount Nittany and University Park Philadelphia Wyoming Valley Susquehanna HS Lewistown

12. NACN Update: RE-AIM

14. RE-AIM Evaluation Glasgow RE, Vogt TM, Boles SM (1999) Evaluating the public health impact of health promotion interventions: The RE-AIM framework.American Journal of Public Health, 89:1323-1327. A systematic way for researchers, practitioners, and policy makers to evaluate health behavior interventions ReachEfficacy/EffectivenessAdoptionImplementationMaintenance Participation by residents Impact on residents Providing the programs Fidelity of the programs Establish a routine/norm

15. NACN 2002-2004 Data from Kluhsman, et al, Prev Chronic Disease, 2006 ReachEfficacy/EffectivenessAdoption Implement- ation Maintenance Participation by residents Impact on residents Providing the programs Fidelity of the programs Establish a routine/norm 3,981 residents offered screening at 96 screening initiatives 3,981 residents offered screening at 96 screening initiatives 1,951 residents accepted screening 1,951 residents accepted screening $183.79 per screening* $183.79 per screening* 96 screening initiatives 96 screening initiatives Trend: Trend:2002:n=222003:n=352004:n=39 Ongoing technical assistance Ongoing technical assistance [Subsequent trainings on evidence- based programs in 2005, 2006, 2007] [Subsequent trainings on evidence- based programs in 2005, 2006, 2007] 14 community changes (e.g., new contracts for low/no cost screening; increased clinic hours for cancer screenings) 14 community changes (e.g., new contracts for low/no cost screening; increased clinic hours for cancer screenings) * (Grant Total Cost)x(96 Screening Initiatives) / ((371 Education and Screening Initiatives)x1951 Screenings). Assumes 0 benefit for community changes and 0 cost for outreach and development initiatives.

16. NACN Update: CRC Survivorship

17. Percent Who Ever Had a Sigmoidoscopy or Colonoscopy, PA Adults 50 Years and Older, 1995-2006 + 1.8% / year

18. 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)

19. 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

20. 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%)

21. CRC Survivorship Assessments and Plans n = 14 Appalachian Counties

22. Specific Area of Colorectal Cancer Survivorship Perceived Barriers Community Assets Planned to Enhance No.% % % Access to or Knowledge of Community Resources 1392.91071.414100.0 Psychosocial Care1285.714100.01285.7 Transportation Services1285.7328.6750.0 Treatment-Related Care1178.6857.11392.9 Primary Health Care857.1321.41071.4 Financial Assistance and Health Insurance750.0535.7642.9 Colorectal Cancer Screening642.900.0750.0 Care Givers Support321.4214.3428.6 Language, Culture, Low Literacy321.417.1321.4 Healthy Life Styles214.300.0428.6 Genetic and Familial Risk17.100.0428.6 Disability00.00 214.3 Barriers, Assets and Plans

23. Design: Community- and evidence-based intervention in food pantries with pre-post assessment of screening mammography in Healthy Woman Program Result: Of the 302 age-eligible women, 158 (52.4%) were in need of scheduling a mammogram. Of the 158 women, 138 (87.3%) received a mammogram as a result of the adapted Tell A Friend® Program. Three (2.2%) women were diagnosed with breast cancer and received treatment. The number of breast cancer screenings provided to underserved residents increased by 46 (28.2%) during 2005. Geography: Indiana County Status: Manuscript accepted for publication, Journal of Rural Health Collaborators: Marcy Bencivenga, BA Susan DeRubis, MS, RN Patricia Leach, MS, MEd Lisa Lotito, BA Charles Shoemaker, ARRT(R), (N), CNMT, MBA Eugene J. Lengerich, VMD, MS NACN Update: Recruitment to Mammography through Food Pantries, Indiana County, PA

24. Approach: Integrate community partnerships and evidence-based program education with health care training and delivery Objective: Increase colorectal cancer screening and survivorship in the target area Components: Community partnerships Evidence-based programs South Central Pennsylvania Cancer Education Network Cancer Information Service Primary care practice improvement Surgical and medical care delivery Geography: Central Pennsylvania – Seven rural or urban counties from Lebanon to Centre County Elevated ascending colorectal cancer rates Status: Begin January 1, 2008 for two years NACN Update: Integrated Colorectal Cancer Program (ICCaP)

25. Design: Family-based randomized intervention trial with pre- and post-behavioral and biomarker measurement Population: Low-income, rural families Home-based intervention Geography: Central Pennsylvania – Centre and Snyder Counties Status: Completed focus groups Tionni Weinrich, MS, and J. Lynne Brown, PhD Currently recruiting for intervention study Tionni Weinrich, MS, and J. Lynne Brown, PhD Collecting baseline anthropometrics, blood pressure screening, questionnaire and biomarker assessment Robin Taylor Wilson, PhD Eugene J. Lengerich, VMD, MS NACN Update: Obesity Reduction in Rural, Low-income Families through Food Selection and Physical Activity

26. Data: Geocoded1997-2005 colorectal and prostate cancer cases in PA Software and Tools: Model cancer atlas Star Plots GIS analysis Principal components Status: Geocoded prostate cancer data Developed model atlas Developing GeoViz toolkit Collaborators: Gene Lengerich, VMD, MS Frank Hardisty, PhD Mark Gahegan, PhD Brenda Kluhsman, MSS Alan MacEachren, PhD Robin Taylor Wilson, PhD NACN Update: Mapping of Cancer

27. Surveillance Update: Appalachia

28. Population Density Rates, 2000 Population Change in Appalachia, 1990–2000

29. Poverty Rates 1990 2000 Poverty Rates

30. Barcus H. The emergence of new Hispanic settlement patterns in Appalachia. Professional Geographer 2007:59(3);298-315. Cluster Analysis of Hispanic Settlement

31. General Health Disparities in Appalachia

32. Ame rica Description Population (millions) Avg. Income per Capita Percent Completing High School 1Asian10.421,56680 2 Northland low-income rural white 3.617,75883 3 Middle America 210.024,64084 4 Low income whites in Appalachia & Mississippi Valley 16.616,39072 5 Western Native America 1.010.02969 6 Black Middle America 23.415,41275 7 Southern low-income rural black 5.810,46361 8 High risk urban black 7.514,80072 Basic Sociodemographic Characteristics of the ‘Eight Americas’ Murray CJL, Kulkarni SC, Michaud C, Tomijima N, Bulzacchelli MT, Iandiorio TJ, Ezzati M. Eight Americas: Investigating mortality disparities across race, counties, and race-counties. PLoS Med 3(90)e260. DOI: 10.1371/journal.pmed.0030260.

33. Life Expectancy at Birth in the Eight Americas (1982-2001) Males Appalachia Females Appalachia

34. Review Provide an update on ACCN research initiatives (today) Provide an overview of ACCN and NACN Review NACN community-based initiatives Review recent surveillance information