Cancer Survivorship Research-The Public Health and Population Based Approach

Andrea (Andi) Dwyer, Program DirectorCancer Prevention and Control Research NetworkUniversity of Colorado Center

Bench to Bedside

Basic Preclinical Research

Translational Research

Clinical Research Dissemination Adoption

ManyIdeas

Population Affected by

Cancer

Cancer Prevention & Control Research Network

• The CPCRN was initiated in October 2002, with funding from the Centers for Disease Control and Prevention (CDC) & National Cancer Institute (NCI)

• It is a thematic research network of the CDC Prevention Research Centers (PRCs)

• The mission of CPCRN is to accelerate the adoption, implementation, translation, and dissemination of evidence-based cancer prevention/control strategies

• Several workgroups; Marcia Ory-Texas, Betsy Risendal and Andrea Dwyer Survivorship Workgroup co-chairs-Colorado

CPCRN Network Center Map

Examples of Public Health and Population Based Survivorship Research

1. Transitioning from active cancer treatment to survivorship

2. Managing long term cancer symptoms and side effects in the community

3. Registry of colorectal cancer survivors

A Novel Primary Care CLINICAL Group Visit Intervention for Cancer Survivors:

What Is Next (WIN)

• Group visit model provides strategy to focus on targeted health behaviors

• Group visits are feasible and acceptable to survivors (and caregivers)-80% Retention

• Engages primary care providers/practices into survivorship phase of care

• Dissemination planned to other areas/clinic sites

• Improvements in physical activity, nutrition and communication with providers and family

WIN Pilot Series Results

1. Self-management is one of the few evidence-based strategies for self-management support is the Chronic Disease Self-Management Program (CDSMP).

2. The CDSMP is a six week, NOT MEDICALLY BASED -

community-led, high fidelity group problem-solving/ educational

intervention delivered through trained peer leaders (Stanford Patient

Education Center).

Research Goal: 1. Describe the adaptations made to the CDSMP for the Cancer Thriving and Surviving Program, and evaluate the perceived satisfaction and utility of these adaptations among survivors.

2. Demonstrate the feasibility/ acceptability of the delivery and evaluation of the Cancer Thriving and Surviving Program

Cancer-Thriving and Surviving (CTS)Wait-Listed Randomized Control Trial

Recruitment Goal: 300 peopleAchievement: 323!!!

What It Took:2 Years (6 months longer than planned)• Community partner who

actively recruited for trial at $70,000

• Television-Radio and Newspaper

• Flyer distribution and outreach at physician offices and treatment centers

Interim Results:• Improvements in Outcomes

(pending as not final analysis)• Able to reach recruitment

goals• 15% Colorectal Cancer

Survivors

Curriculum Revision

*Family Cancer Registries*Cancer is a reportable disease and in most US States Tumor Registries are funded by CDC

• Colon Cancer Family Registry (CCFR)• Cancer Genetics Network (CGN)• Rare Cancer Genetics Registry (RCGR)

• NCI-funded• Multi-institutional• Population and clinic-based recruitment• Central data collection• Multiple Outcomes• Long-term follow-up• Consent for re-contact• Goal: facilitate research

Since 1997 • 35,300 enrolled – 12 centers• 10,225 families• Status: long-term follow-up

Data available• Family cancer history• Risk factors – diet, exercise,

hormone use, alcohol, screening history, NSAIDs

• Clinical data – tumor stage, grade, histology

• Biospecimens – blood, tumor– MSI, IHC, methylation, BRAF,

MMR sequencing

Table 6. Survey Data Collected by Participant Type

Participant Type Baseline survey

5-yr follow-up(to date)*

10-yr follow-up(to date)*

Colorectal Cancer Sub-cohort

11,635 6,233 (7,224) 2,539 (2,973)

Other Cancer Sub-cohort

3,629 2,361 (2,805) 992 (1,062)

Unaffected Sub-cohort

20,033 13,370 (16,048) 4,726 (6,077)

TOTAL 35,297 21,964 (26,077) 8,257 (10,112)

Colon Cancer Family Registries

As An Advocate…• Find a Trial• Join a Trial• Spread the Word• Research Does NOT Stop after

TreatmentAgencies and Organizations to Contact for Population and Public Health-Survivorship Research

LIVESTRONG: Programs and Partnerships www.livestrong.org NCI: Office of Cancer Survivorship www.dccps.nci.nih.gov ACS: Survivorship Trials and Behavioral Research www.cancer.org Community Cancer Centers-Research http://ncccp.cancer.gov NCI Designated Cancer Centers http://www.cancer.gov

What Does a Budget Cut Mean...Does Even A 10% Cut Make a Difference?

Total CPCRN Budget $300K

Minus 10%=$270K

$30,000 Less

Research Assistant time reduced from 100% to 40%

WIN Program halted for several months-was the only survivorship program available at time at University

of Colorado Cancer Center

CCFRFunding Was Decreased for

the Colon Cancer Family Registry Project During

Biggest Phase of Reaching Rural Communities in

Colorado – this impactedrepresentation of populations.

CTSWait List Opportunity Might Not Be Possible in CTS Trial…Changing Research Design

Opportunities… Patient Protection and Affordable Care Act• Better accessibility to health care• Person centered care-improved coordination• Emphasis on primary care• Greater Attention to Survivorship

The Message!• There are nearly 13 million Cancer Survivors in the

United States… • Survivorship Research and Improving Care is

vital for the health of our nation!