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From Cancer Patient to Cancer Survivor: Lost in Transition
issues, including a series of reports on topics ranging from cancer prevention to end-of-life care.
The Board’s first major report, Ensuring Quality Cancer Care (IOM, 1999), recommended strategies to promote evidenced-based, comprehensive, compassionate, and coordinated care throughout the cancer care trajectory, but its focus was on primary treatment and it did not directly address the quality of care for cancer survivors. However, it noted that such issues needed attention. This report, then, is part of a Board initiative to address quality concerns for cancer survivors with an emphasis on what happens following the primary treatment of cancer. The Board report, Improving Palliative Care for Cancer (IOM, 2001), addressed the need for quality care at the end of life for those who die from cancer and symptom management throughout the care trajectory.
The NCPB decided to separate its exploration of cancer survivorship into three reports. The first report examined childhood cancer survivorship (IOM, 2003a). Some policy issues are common to both children and adults who have survived cancer (e.g., insurance and employment concerns); however, unique features of pediatric treatment and health care delivery systems led to the decision to pursue childhood and adult cancer survivorship issues independently. The second report addressed one particular aspect of survivorship, focusing on psychosocial needs of survivors, using female breast cancer as the best studied example (IOM, 2004). This third report is intended as a comprehensive look at the current status and future requirements of the large and growing cohort of adult survivors. The first two reports were carried out by the NCPB itself, but the Board decided to establish a separate and independent committee for this third report in order to assemble the large number of experts needed to consider the variety and importance of issues relevant to the diverse body of adult survivors who are increasingly coming to the attention of the public, cancer care providers, and policy makers.
In its deliberations, the committee has adopted the definition of cancer survivor used by NCI’s Office of Cancer Survivorship, “An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition” (NCI, 2004). In applying this definition, however, the committee decided to focus its attention on a relatively neglected phase of the cancer care trajectory, the period following first diagnosis and treatment and prior to the development of a recurrence of the initial cancer or death. The committee identified several areas of concern for individuals during this monitoring/surveillance period, for example, the lack of clear evidence on recommended follow-up care and the unique psychosocial needs of cancer survivors following treatment, a time when frequent contact with