Appendix C
Excerpt From Cancer Patient to Cancer Survivor: Lost in Transition

PROVIDING A CARE PLAN FOR SURVIVORSHIP

A strategy is needed for the ongoing clinical care of cancer survivors. There are many opportunities for improving care—psychosocial distress can be assessed and support provided; cancer recurrences and second cancers may be caught early and treated; bothersome symptoms can be effectively managed; preventable conditions such as osteoporosis may be avoided; and potentially lethal late effects such as heart failure averted.

Recommendation 2: Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained. This “Survivorship Care Plan” should be written by the principal provider(s) that coordinated oncology treatment. This service should be reimbursed by third-party payors of health care.

Such a care plan would summarize critical information needed for the survivor’s long-term care:



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Implementing Cancer Survivorship Care Planning: Workshop Summary Appendix C Excerpt From Cancer Patient to Cancer Survivor: Lost in Transition PROVIDING A CARE PLAN FOR SURVIVORSHIP A strategy is needed for the ongoing clinical care of cancer survivors. There are many opportunities for improving care—psychosocial distress can be assessed and support provided; cancer recurrences and second cancers may be caught early and treated; bothersome symptoms can be effectively managed; preventable conditions such as osteoporosis may be avoided; and potentially lethal late effects such as heart failure averted. Recommendation 2: Patients completing primary treatment should be provided with a comprehensive care summary and follow-up plan that is clearly and effectively explained. This “Survivorship Care Plan” should be written by the principal provider(s) that coordinated oncology treatment. This service should be reimbursed by third-party payors of health care. Such a care plan would summarize critical information needed for the survivor’s long-term care:

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Implementing Cancer Survivorship Care Planning: Workshop Summary Cancer type, treatments received, and their potential consequences; Specific information about the timing and content of recommended follow-up; Recommendations regarding preventive practices and how to maintain health and well-being; Information on legal protections regarding employment and access to health insurance; and The availability of psychosocial services in the community. These content areas, adapted from those recommended by the President’s Cancer Panel (President’s Cancer Panel, 2004), are elaborated upon in Box 3-16. The content of the survivorship care plan could be reviewed with a patient during a formal discharge consultation. Clinicians would likely have discussed some aspects of the survivorship care plan before or during treatment, for example, short- and long-term treatment effects and their implications for work and quality of life.1 However, during acute treatment, much time is spent dealing with the acute toxicities of treatment that little emphasis is given to the post-treatment care plan. A substantial amount of information needs to be communicated during this consultation and then documented in an end-of-treatment consultation note. Appropriate reimbursement should be provided for such a visit, given the complexity and importance of the consultation. The member of the oncology treating team who would be responsible for this visit could vary depending on the exact course of treatment. The responsibility could be assigned either to the oncology specialist coordinating care or to the provider responsible for the last component of treatment. Oncology nurses could play a key role. The survivorship care plan may need revision as new knowledge concerning late effects and interventions to ameliorate them, genetic disorders, and surveillance methods is identified. Cancer survivors can help to ensure that the plan is followed. The consultation at the conclusion of primary treatment could serve as a teaching event for survivors and their family members and provide opportunities to discuss with clinicians their prognosis, concerns, lifestyle issues, and follow-up schedules. The plan could be used by survivors subsequently to raise questions with doctors and prompt appropriate care during follow-up visits. 1 Providing a survivorship care plan may prove difficult for those individuals who cease treatment prematurely and do not return for the remainder of their care. Primary care physicians involved in subsequent care of such patients may need to contact oncology providers to obtain a survivorship care plan.

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Implementing Cancer Survivorship Care Planning: Workshop Summary BOX 3-16 Survivorship Care Plan Upon discharge from cancer treatment, including treatment of recurrences, every patient should be given a record of all care received and important disease characteristics. This should include, at a minimum: Diagnostic tests performed and results. Tumor characteristics (e.g., site[s], stage and grade, hormone receptor status, marker information). Dates of treatment initiation and completion. Surgery, chemotherapy, radiotherapy, transplant, hormonal therapy, or gene or other therapies provided, including agents used, treatment regimen, total dosage, identifying number and title of clinical trials (if any), indicators of treatment response, and toxicities experienced during treatment. Psychosocial, nutritional, and other supportive services provided. Full contact information on treating institutions and key individual providers. Identification of a key point of contact and coordinator of continuing care. Upon discharge from cancer treatment, every patient and his/her primary health care provider should receive a written follow-up care plan incorporating available evidence-based standards of care. This should include, at a minimum: The likely course of recovery from treatment toxicities, as well as the need for ongoing health maintenance/adjuvant therapy. A description of recommended cancer screening and other periodic testing and examinations, and the schedule on which they should be performed (and who should provide them). Information on possible late and long-term effects of treatment and symptoms of such effects. Information on possible signs of recurrence and second tumors. Information on the possible effects of cancer on marital/partner relationship, sexual functioning, work, and parenting, and the potential future need for psychosocial support. Information on the potential insurance, employment, and financial consequences of cancer and, as necessary, referral to counseling, legal aid, and financial assistance. Specific recommendations for healthy behaviors (e.g., diet, exercise, healthy weight, sunscreen use, immunizations, smoking cessation, osteoporosis prevention). When appropriate, recommendations that first-degree relatives be informed about their increased risk and the need for cancer screening (e.g., breast cancer, colorectal cancer, prostate cancer). As appropriate, information on genetic counseling and testing to identify high-risk individuals who could benefit from more comprehensive cancer surveillance, chemoprevention, or risk-reducing surgery. As appropriate, information on known effective chemoprevention strategies for secondary prevention (e.g., tamoxifen in women at high risk for breast cancer; aspirin for colorectal cancer prevention). Referrals to specific follow-up care providers (e.g., rehabilitation, fertility, psychology), support groups, and/or the patient’s primary care provider. A listing of cancer-related resources and information (e.g., Internet-based sources and telephone listings for major cancer support organizations). SOURCE: Adapted from the President’s Cancer Panel (2004).

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Implementing Cancer Survivorship Care Planning: Workshop Summary Agencies that accredit health plans and other providers could build compliance with the recommended consultation into their evaluation criteria (see discussion of quality measures in chapter 4). With 61 percent of cancer survivors aged 65 and older, the Medicare program could play a key role in ensuring that the survivorship care plan is written, communicated, and reimbursed. A formal assessment of survivorship care planning should be undertaken to assess its value. Survivorship care plans have been recommended by the President’s Cancer Panel and by the IOM committee; however, the implementation of such plans has not yet been formally evaluated. Despite the lack of evidence to support the use of survivorship care plans, the committee concluded that some elements of care simply make sense—that is, they have strong face validity and can reasonably be assumed to improve care unless and until evidence accumulates to the contrary. Having an agreed upon care plan that outlines goals of care falls into this “common sense” area. Health services research should be undertaken to assess the impact and costs associated with survivorship care plans and to evaluate their acceptance by both cancer survivors and health care providers.