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From Cancer Patient to Cancer Survivor: Lost in Transition
FINDINGS AND RECOMMENDATIONS
Survivorship care represents a unique phase of the cancer care trajectory following primary treatment and lasting until recurrence, a second cancer, or death. An ideal system of survivorship care would provide all cancer survivors with preventive services, surveillance, necessary interventions, and coordination with primary care to ensure that all of the survivor’s care needs are met. Many cancer survivors do not receive comprehensive survivorship care. They are, in effect, lost to follow-up. Some survivors may receive aspects of post-treatment care from their cancer care or primary care providers, but such care is rarely comprehensive or coordinated. Many survivors are not aware of their increased risk for late effects and do not seek the care they need. Primary care physicians are often willing to assume follow-up responsibilities, but do not receive explicit guidance from oncology specialists on what they should do. Improvements in information systems and electronic health records hold promise to improve communications between providers involved in cancer care, but such systems are not yet widely available. Education and training opportunities on survivorship care are limited and comprehensive evidence-based clinical practice guidelines have not been developed. Promising models of delivering survivorship care have been tested in Europe, but have not been formally evaluated in the United States. The chronic disease model of care is emerging in the United States, but has not been applied in the context of cancer survivorship.
Defining Quality Health Care for Cancer Survivors
The National Cancer Policy Board, in its 1999 report, Ensuring Quality Cancer Care, recommended that systems of care “measure and monitor the quality of care using a core set of quality measures” and specified some of the attributes and applications of such measures (Box 4-9) (IOM, 1999). Since the IOM report was published, the American Society of Clinical Oncology, the Susan G. Komen Foundation, the National Cancer Insitute, and others have supported research and activities to further the development of quality measures for cancer care.
For certain types of cancer, some evidence-based measures of quality survivorship care exist. Survivors of breast cancer, for example, need to receive annual mammograms, survivors of prostate cancer need periodic testing with the prostate-specific antigen (PSA) test, and survivors of colon cancer require periodic colon examinations. Other measures could likely be developed with available evidence, for example, the need to monitor some individuals treated with certain chemotherapeutic agents for heart conditions and to monitor certain individuals treated by radiotherapy for thyroid