The Cancer Support Community Research Finds High Levels of Distress Among Breast Cancer Survivors Yet Minimal Awareness of Tools and Programs Designed to Help
(Release provided The Cancer Support Community)
WASHINGTON — October, 10, 2011 — New data collected from more than 1,000 breast cancer survivors finds that many experience significant social and emotional issues not adequately addressed by the current standard of care. The research indicates high levels of distress among breast cancer survivors and minimal awareness of tools and programs designed to improve communication between patients and physicians when weighing a patient’s treatment options. Survey participants also reported that plans intended to improve coordination between multiple care teams were rarely implemented. These findings are outlined in an inaugural Breast Cancer M.A.P. Index, released today by the Cancer Support Community (CSC), a non-profit organization dedicated to ensuring that social and emotional support are critical, integrated components of complete cancer care, through original peer-reviewed research, personalized support and education services.
CSC’s Research and Training Institute surveyed 1,043 breast cancer survivors as part of its Breast Cancer M.A.P. (Mind Affects the Physical) Project. The goal was to better understand three key areas of their psychosocial needs: patient-physician communication when making treatment decisions, screening for social and emotional distress and the role of survivorship care plans post-treatment. CSC and its 21-member Advisory Council analyzed the statistically significant data, generating new insights into the social and emotional experiences and needs of breast cancer survivors. The M.A.P. Project was supported by generous grants from The Breast Cancer Fund of National Philanthropic Trust with additional support from Susan G. Komen for the Cure.
“We have made extraordinary advances in the treatment of breast cancer but it’s clear from these findings that the full spectrum of care isn’t currently being delivered to survivors,” said Lidia Schapira, M.D., Assistant Professor, Department of Medicine, Harvard Medical School, Massachusetts General Hospital and M.A.P. Project advisor. “We hope this report encourages the cancer community to pursue a renewed focus on providing social and emotional support to people with breast cancer, and improve the standard of care for the growing survivor population.”
Highlights from the data include:
Communication Around Treatment Decisions
The majority of patients surveyed felt unprepared for arguably the most important conversation following a breast cancer diagnosis—discussion of cancer treatment options with their doctor.
• 75 percent of respondents reported that it is highly important to receive help gathering informational materials before the first meeting with a specialist
• However, only 15 percent reported that their physician or specialist provided them with materials before their first visit after being diagnosed with breast cancer
• Less than half, 48 percent, were not fully satisfied with the questions they asked during the initial visit with a breast cancer specialist
Survivorship Care Planning
A survivorship care plan (SCP) is a tool designed to include treatment and other clinical details that are critical to an individual's long-term care. The intent is to improve communication between patients and their various care providers to ensure a comprehensive and coordinated approach to cancer care after treatment ends. SCP’s are the central recommendation of a 2005 report from the Institute of Medicine, yet M.A.P. Project data show the implementation of SCPs into the standard of care is virtually non-existent and patient awareness is low, despite high-demand from survivors.
• 90 percent of survivors surveyed did not receive a SCP
• Of the survivors who did not receive a SCP, 96 percent report that they would have liked to receive one
• Of the survivors who did receive a SCP, 71 percent found the plan to be useful or very useful
Screening for Social and Emotional Distress
Distress screening is a systematic process in which cancer survivors are asked by their health care providers about problems that may be causing them anguish. In the United States, 85 percent of cancer patients are treated in a community setting, where distress screening is largely non-existent. The M.A.P. Project data indicate most cancer patients experience distress that is often overlooked, especially as patients transition from active treatment to survivorship care .
• 87 percent of respondents rated at least one social, physical or emotional issue as a moderate to very severe problem
• The most frequent causes of distress, as reported by survivors, include: fatigue, sexual dysfunction, and sleep issues
• Conditions most frequently associated with distress were depression and co-morbidities (when a patient is faced with two or more conditions or diseases)
Study findings suggest the need to begin distress screening at the moment of diagnosis to improve health outcomes for survivors.
“I’m extremely proud of the Institute’s work that takes the vision of the Cancer Support Community one step further, helping to advance our understanding of the social and emotional needs of survivors,” said Kim Thiboldeaux, president and CEO of the Cancer Support Community. “These insights will inform CSC’s development of resources and programs to improve the experience of people with breast cancer from the point of diagnosis through long-term survivorship. We are excited to be sharing these inaugural findings with the cancer community and look forward to continued research examining the needs of this growing population for years to come.”
“The Breast Cancer M.A.P. Index is a tremendous opportunity for breast cancer survivors to participate in a community and be of service to others who may face this disease in the future,” said Ambassador Nancy G. Brinker, founder and CEO of Susan G. Komen for the Cure. “The Breast Cancer M.A.P. Index is allowing us to identify gaps that can lead to better treatment support and aftercare going forward. I’d encourage all of my fellow survivors to read the Breast Cancer M.A.P. Index, and participate in ongoing surveys.”
With the generous support from the Breast Cancer Fund of National Philanthropic Trust and Susan G. Komen for the Cure, CSC’s Research & Training Institute is continuing to recruit breast cancer survivors to join the M.A.P. Project. By joining this unique registry and sharing their breast cancer experience, survivors have a unique opportunity to help researchers better understand the full impact of breast cancer and ultimately influence the development of innovative ways to improve the cancer experience for millions. Survivors interested in participating in the M.A.P. Project may join online at www.breastcancerregistry.org or call 1-888-MAP-CSC9 (1-888-627-2729). Anyone interested in learning more about the registry should visit the website for additional information.
To access the Institute’s full Breast Cancer M.A.P. Index, visit: www.cancersupportcommunity.org/breastcancermap
Cancer Support Community Resources For Those Impacted by Breast Cancer
CSC’s acclaimed educational series, Frankly Speaking About Cancer, provides valuable cancer information with a focus on emotional and social support. Through informative booklets, professionally-led workshops, tailored web content and a weekly Internet radio show, Frankly Speaking About Cancer addresses a variety of cancer-related topics, and is available at no cost to individuals affected by cancer. Publications specific to breast cancer include:
• Frankly Speaking About Cancer: Advanced Breast Cancer
• Frankly Speaking About Cancer: Breast Reconstruction
• Frankly Speaking About Cancer: When a Women You Care About Has Breast Cancer
• Frankly Speaking About Cancer: Cuidador a Cuidador (From Caregiver to Caregiver)
About the Cancer Support Community’s Research and Training Institute
The first Institute in the United States dedicated to psychosocial, behavioral and survivorship research and training in cancer, this dedicated group examines the critical role of social and emotional support for those living with cancer. The Institute’s peer-reviewed research on the distinctive needs of survivors and caregivers throughout each phase of the cancer experience, informs CSC’s patient and caregiver forums, retreats and state-of-the-art training programs for health care professionals.
About the Cancer Support Community
Backed by evidence that the best cancer care includes emotional and social support, the Cancer Support Community offers these services to all people affected by cancer. Likely the largest professionally-led network of cancer support worldwide, the organization delivers a comprehensive menu of personalized and essential services. Because no cancer care plan is complete without emotional and social support, the Cancer Support Community has a vibrant network of community-based centers and online services run by trained and licensed professionals. For more information, visit www.cancersupportcommunity.org.
In July 2009, The Wellness Community and Gilda’s Club joined forces to become the Cancer Support Community. The combined organization provides the highest quality psychological and social support through a network of more than 50 local affiliates, 100 satellite locations and online.
For up-to-date information on the organization’s resources and ongoing initiatives, including the Cancer Support Community’s National Cancer Summit taking place November 5, 2011 in Washington, D.C., visit www.cancersupportcommunity.org, follow CSC on Twitter or “like” CSC on Facebook.