Developing and Implementing the Massachusetts Comprehensive Cancer Control Coalition Survivorship - Preventing Chronic Disease: January 2010: 09_0060

Volume 7: No. 1, January 2010

TOOLS AND TECHNIQUES
Developing and Implementing the Massachusetts Comprehensive Cancer Control Coalition Survivorship Summit

Stephenie C. Lemon, PhD; Marianne N. Prout, MD, MPH; Junaidah B. Barnett, PhD, MCH(N); Maureen Sullivan Flynn, MS
Suggested citation for this article: Lemon SC, Prout MN, Barnett JB, Flynn MS. Developing and implementing the Massachusetts Comprehensive Cancer Control Coalition Survivorship Summit. Prev Chronic Dis 2010;7(1).
http://www.cdc.gov/pcd/issues/2010/jan/09_0060.htm. Accessed [date].

Abstract
Cancer survivors face numerous medical and psychosocial challenges, which the medical and public health systems are ill-equipped to deal with. In May 2008, the Massachusetts Comprehensive Cancer Control Coalition conducted a Survivorship Summit to elicit input from cancer survivors and professionals on developing system-level action plans for cancer survivorship issues. We describe how health care and public health professionals can implement similar events. Our results suggest that a cancer survivorship summit can be a valuable tool for cancer coalitions and advocacy organizations in determining survivorship agendas and action plans.

Introduction
More people than ever are surviving a cancer diagnosis. Almost 12 million cancer survivors live in the United States, and that number is expected to increase given recent trends (1). Despite the decrease in deaths, many cancer survivors face medical and psychosocial problems as a result of the cancer they have survived or the treatment they received (2). The current health care and public health systems are not designed to handle the transition from active treatment to posttreatment care (3,4). In its report From Cancer Patient to Cancer Survivor: Lost in Transition, the Institute of Medicine addresses the medical and psychosocial issues faced by cancer survivors and makes recommendations for improving the health and quality of life of cancer survivors. Cancer survivors face medical and psychosocial late effects (eg, interpersonal consequences, fatigue, pain, recurrence, depression and anxiety, distress, work and financial problems) (5-10). Such problems are difficult to address from a public health or policy perspective. The Massachusetts Comprehensive Cancer Control Coalition (MCCCC) seeks to guide cancer coalitions, survivorship-focused organizations, and public health professionals to use the summit methodology to develop survivorship priorities and action plans. We describe 1) the MCCCC Survivorship Summit planning process, 2) the process of eliciting and prioritizing action plans, and 3) our evaluation results.

The MCCCC is responsible for decreasing deaths and suffering caused by cancer in the state of Massachusetts through a comprehensive approach. The MCCCC comprises more than 300 organizational and individual members. Its priorities are guided by a statewide plan (11), which was implemented by 6 working groups, including the Survivorship Working Group (SWG). Our work is funded in part by a cooperative agreement from the Centers for Disease Control and Prevention.

The goal of the SWG is to ensure that all cancer survivors in Massachusetts have equal access to information and follow-up medical, rehabilitative, and psychosocial services. The group includes 25 people from 12 organizations, representing academic, community, medical, and nonprofit voluntary sectors. Survivorship begins on the day of diagnosis and includes others who are affected by the diagnosis, including family members, friends, and caregivers (12).

Rationale for a Cancer Survivorship Summit
Beginning in 2006, the SWG conducted a series of assessments to better understand cancer survivorship issues in Massachusetts. In the same year, questions were added to the Behavioral Risk Factor Surveillance System (BRFSS) survey in Massachusetts by the Massachusetts Department of Public Health. The BRFSS monitors disease, prevention, and quality of life through telephone interviews. BRFSS data confirmed that a substantial proportion of the state’s adult population (20% of respondents aged 55 or older) had received a cancer diagnosis, with 52% of these occurring more than 5 years before the survey. Cancer survivors had similar behavioral risk factor rates (in the domains of smoking, physical activity, and weight) compared with the general population. However, rates of chronic diseases and disability were substantially higher among cancer survivors than among the general population.

The SWG then implemented a Web- and telephone-based qualitative survey to determine what barriers, issues, and concerns Massachusetts cancer survivors experienced; 1,377 survivors responded to the survey. The SWG then completed a thematic analysis to identify common experiences, which include the following: 1) the need for a central source of information on resources available in respondents’ geographic area, without having to rely on support groups; 2) financial struggles that result from a cancer diagnosis, particularly among people older than 60; 3) loss of health insurance; 4) workplace discrimination; 5) lack of information about clinical trials; and 6) lack of awareness of the need for advanced care planning.

Survey participants did not broadly represent all cancer survivors. Most responses (63%) came from women, more than 97% of whom were breast cancer survivors. The survey also did not show how the common problems could be solved. The SWG determined that a statewide cancer survivorship summit was needed to develop a deeper understanding of the issues and how they could be faced through devising specific short- and long-term action steps.

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Preventing Chronic Disease: January 2010: 09_0060