Abstract
This workshop proceedings was compiled from presentations and discussion during a two-day Institute of Medicine (IOM) National Cancer Policy Forum workshop sponsored by the National Coalition for Cancer Survivorship (NCCS) in partnership with the Lance Armstrong Foundation and the National Cancer Institute. The purpose of the workshop was to discuss a key recommendation of the joint IOM and National Research Council report, From Cancer Patient to Cancer Survivor: Lost in Transition. That report recommended that patients completing their primary treatment for cancer be given a summary of their treatment and a comprehensive plan for follow-up. This “Survivorship Care Plan” would also be provided to the patient’s primary care providers. Such a plan would inform patients (and their providers) of the long-term effects of cancer and its treatment, identify psychosocial support resources in their communities, and provide guidance on follow-up care, prevention, and health maintenance. The purpose of the IOM workshop was to further inform the National Cancer Policy Forum on the next steps to implementing cancer survivorship care planning. The workshop featured commissioned papers, invited presentations, and discussions on formats for templates for treatment summaries and care plans; implementation issues, such as reimbursement; and potential practice sites for pilot tests of survivorship care planning. The workshop was open to the public and was attended by stakeholders with an interest in survivorship care: cancer survivors, nurses, primary care physicians, oncology specialty physicians, health services re-
searchers, and representatives of government agencies, health insurance companies and managed care organizations.
The first day of the workshop was devoted to (1) an overview of the goals of survivorship care planning, (2) a review of the status of treatment summaries for oncology care, and (3) a general discussion and reaction to a series of qualitative research efforts. Structured one-on-one interviews and focus groups with consumers, nurses, and oncology and primary care physicians were conducted to help the forum better understand opportunities for, and barriers to, survivorship care planning. Reactants with diverse perspectives (consumers, nurses, physicians, insurers) were invited to participate in the discussion of these efforts. Topics for discussion included:
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What are the essential elements of the care plan? Will a single template work?
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Who is responsible for creating the plan and discussing the plan with patients?
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What are the respective roles of oncology/primary care and physicians/nurses?
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What economic strategies could encourage implementation of care planning?
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What barriers exist to creating the care plan? How can they be overcome?
On the second day of the workshop there were presentations and discussion on the following topics:
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Resources for completing the care plan template (survivorship guidelines, psychosocial support resources, recommendations on healthy behaviors/prevention).
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Adapting care plans to electronic record systems and information technologies.
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Statewide and collaborative approaches to implementation.
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Opportunities to pilot test survivorship care planning and assess its impact.
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An evaluation and research agenda for survivorship care planning.
At the end of the second day of the workshop, moderators led a wrap-up discussion of highlights of the two-day workshop.
