CPCRN SURVIVORSHIP WORKGROUPCo-Leads:

Colorado and Texas A&M

The Challenge and Mission…

The CDC/LAF National Action Plan for Cancer Survivorship recommends that the Public Health Community “promote healthy life for cancer survivors including minimizing preventable pain and distress”

Colorado and Texas A&M highlighted survivorship and health promotion as the core of their local activities as grantees within the CPCRN Network

There is great opportunity in cancer control programs to improve long term health outcomes of cancer survivors

The Survivorship Workgroup formed (Texas and Colorado collaborating)

A survey monkey was conducted in Spring of 2010;

every CPCRN site responded and noted interest inat least one activity related to cancer survivorship

10 of the 26 individuals who responded to surveynoted activities currently underway in the area of cancer survivorship

Based upon enthusiasm and interest, a Survivorship Workgroup was formed…

SURVIVORSHIP WORKGROUP PRIMARY ACTIVITIES

Current Activities (Health Promotion): Survey Scoping Study of Implementation Literature

Potential Future Projects:o Linkage with CRC Cross Center Projects for

Survivorship Care Planningo Focus Group Guide for Cancer Survivorso Chronic Disease Self Management Program

TRANSLATION AND DISSEMINATION-RE-AIM FRAMEWORK

Reach: What populations are currently being targeted? Are these populations representative of different cancers? Different

age groups? Different socio-demographics?

Methods: Survey, Scoping study

Effectiveness:

What evaluation measures are being used? How and where are results reported, and used?

Methods: Key informant interview, Scoping study

TRANSLATION AND DISSEMINATION-RE-AIM FRAMEWORK

Adoption/Implementation: Who is offering these programs (type of institution/training/etc)? What are program components? What are the barriers to program implementation? How have programs been modified for cancer survivors?

Methods: Key informant interview, Scoping study

Maintenance: Are programs designed to achieve long-term benefits at the

individual level? Are programs sustainable (funding, etc)?

Methods: Key informant interview

ONLINE SURVEY OF HEALTH PROMOTION

The Effort: Conduct an environmental scan to identify healthpromotion programs available for cancer survivors throughout the U.S. (physical activity, nutrition/weight management, psychosocial support)

To Determine the: programs available number and type of patients served components of programs use of evidence-based strategies. collect an inventory of resources to identify gaps in services inform cancer planning and state-wide comp cancer

programs

 

Why: Evidence indicates physical activity and weight

management are important in cancer survivorship

ACSM has new evidence-based guidelines (May 2010) and ACS has consensus recommendations (2006) for physical activity, but it is not known if these are being/have been adopted

Fatigue, physical inactivity, weight gain, distress and depression are common after cancer but few programs available (and based on what evidence?)

No one has published a comprehensive snapshot of who is doing what, and where – and this would help move the field forward and assist with resource allocation

How:   Key word search to identify programs

conducted in Spring 2010, including same key words for all CPCRN states

Internet search to identify entities and institutions to receive survey

Primary Survey Components: Description of Program/Entity Demographics of Patients Served Program Elements Structure of Program Identification of Others to Complete Survey Contact Information for Key Informant Interview

Survey approved by Colorado IRB Piloted in Colorado in late August 2010 38 programs identified; 17 responded thus far Sample Respondent Characteristics:

At least one group serving every demographic and cancer type

Largely Urban but Some Rural Community Types of Institutions and Entities:

Hospital Based Programs

NCI Designated and Community Cancer Centers

Physical Rehab/Physical Activity Practice

YMCAs and Recreation Centers

How (Cont…):

 Who: Colorado Initiated the Process

Colorado, Texas A&M, MD Anderson to start –potentially all CPCRN sites

Medical student in Colorado to conduct key informant interviews but Colorado open to partnerships

Texas Experience: Collaboration between CPCRN sites at Texas

A&M and UT Houston with endorsement from MD Anderson and the Cancer Alliance of Texas

Recruitment email and introduction were made Texas specific, listing partners and endorsements

Partners suggested minor changes to Colorado version of the survey.

Recruitment email will be sent by Texas A&M, data will be collected at Colorado

Currently seeking IRB exempt approval in Texas

How Your CPCRN Site Can Participate:

Preview Survey (Handout) Tailor Survey Intro and Invite Letter

Specifically to Your State Colorado Can Provide Key Word Search

Results for each state Informant Interview to Be Conducted in

Colorado or Potentially By each Specific State

SCOPING STUDY OF CANCER SURVIVORSHIP HEALTH PROMOTION

The Effort: Conduct a scoping study* of theimplementation literature regarding health promotion in cancer survivors. To serve as a guide to funders, public health professionals, practitioners, and cancer survivors as a summary of the state-of-the art when designing, implementing, and utilizing programs.

*methodology to gather both published and grey literature to identify gaps. Arksey, H. and O'Malley, L. (2005) Scoping studies: towards a methodological framework, International Journal of Social Research Methodology, 8, 1, 19-32.

Why: Published systematic reviews of exercise and other

health promotion programs include only RCTs, though many other projects are underway and would be valuable to learn from them

No summary of state-of-the-art available to guide

implementation

Who: Colorado, Texas A&M, University of Washington

Colorado Medical Student Internship

Research Questions for the Scoping Study What are current physical activity and

exercise interventions that have been implemented and/or designed in cancer survivor populations?

Future efforts may include other wellness interventions (e.g. nutrition, psychosocial support)

What are the components and results of these studies, and do they show positive impact or significant improvement in their tested populations?

How have these interventions been adapted for use on a large scale or for the cancer survivor population?

How: Key word search (identified over 100 published

articles) using PubMed, Medline, Google Scholar

Internet search of programs and outreach (by phone and email) to uncover evaluation reports and other data not yet published using Google search engine

Reporting rubric to summarize program components

Synthesis of findings (outreach to other CPCRN investigators to join)

Results of Literature Review

Key Words: “cancer survivor evidence based exercise”

36 results on 8/22/2010 “cancer survivor exercise” 94 results on

8/18/2010 “cancer survivor exercise health promotion”

46 results on 8/23/2010 “cancer survivor exercise translation” 3

results on 8/23/2010 “cancer survivor exercise implementation” 5

results on 8/23/2010

How Your CPCRN Site Can Participate:

Assist in searching for literature and filling out the rubric

Assist in searching the gray literature; or

Playing a role in the synthesis of the information found

PARTNERING WITH CROSS CENTER PROJECTS

The Chronic Care Model and the Patient-Centered Medical Home Initiative, are both of high interest in the cancer survivorship community.   In particular, issues of care coordination, patient self-management, and communication between primary and specialty care providers are key elements in these transformative models also relevant to cancer survivorship. 

PARTNERING WITH CROSS CENTER PROJECTS Information about stage and diagnosis/treatment

collected in the CRC screening program could in turn be used to provide patients with basic information for their Survivorship Care Plan- what an opportunity to have the evaluation data be used by the patients themselves!

           ·Patients consented for the CRC screening program could

also be consented at that time to be included in a survivorship registry, which is one of the IOM’s recommendations for advancing survivorship research;

·Adding some important but minimal common elements/variables to the E-Cast evaluation tool regarding survivorship (e.g.  linkage to state vital status records to track survivorship, recording primary care physician of record, date of last contact, survivorship resources/care planning provided?). 

 

Snowball Sampling Method Existing subjects recruit future subjects from within

their own network Best used where resources or experts may be hidden,

such as in an emerging field Can identify current and future stakeholders, and

facilitate networking Results are not fully indicative of all members of

target population, but provide a reasonable snapshot in time

Description of Sampling

Step 1. Identify and contact key stakeholders

Colorado Activity Conduct key word

internet search (see handout)

Ensured that list included reputable programs and experts we knew of through our own activities

Sampling Step 2. Distribute

survey to initial list to start “snowball” and continue to gain more contacts.

Colorado Activities Included request for new

contacts in the cancer and exercise “community”.

Description of Sampling Step 3. Widen the

profile of the sample to gain more stakeholders.

Colorado Activities (Current)

Contacted State Cancer Coalition to send survey to their listserv

Reached out to national contacts at LAF/YMCA for future survey distribution

Texas (both CPCRN sites) will jointly distribute survey

Other CPCRN sites obtain IRB approval?