body exposed), and the severity of initial disease. Complicating the management of late effects is their variable nature. Some late effects are identified early in follow-up—during childhood or adolescent years—and resolve without consequence. Others may persist or develop in adulthood to become chronic problems or influence the progression of other diseases associated with aging. Understanding late effects is further complicated by the constant evolution of treatments. Cohorts of patients, representing different treatment eras, may experience unique sets of late effects. Some survivors of childhood cancer have positive psychosocial outcomes and there is a growing interest in better understanding resiliency among survivors.

There has been no systematic review of the policy implications of this relatively new era of childhood cancer survivorship. In this report, the National Cancer Policy Board proposes a comprehensive policy agenda that links improved health care delivery, investments in education and training, and expanded research to improve the long-term outlook for survivors of childhood cancer. In its deliberations, the Board has applied the definition of cancer survivorship used by the National Cancer Institute’s (NCI) 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” (http://dccps.nci.nih.gov/ocs/definitions.html, accessed March 7, 2003.). This report, focused on the experience of childhood cancer survivors following treatment, is the first of a series of reports concerning cancer survivorship. Forthcoming is a companion report on survivors of adult cancer. The distinct biology of childhood cancers, the consequences to development of children of early onset disease, and the separate care systems associated with pediatric and adult cancer contributed to the Board’s decision to issue separate reports.

FINDINGS AND RECOMMENDATIONS

Developing Guidelines for Care

Recognizing the serious consequences of late effects, professional organizations and advocacy groups have recommended that an organized system of care be in place to address them. While there is general agreement that survivors of childhood cancer should be systematically followed up, there is no consensus regarding where such care should take place, who should provide it, and what its components should be.

Some aspects of follow-up care are understood to be necessary, though they may not be implemented. These include surveillance for recurrence of the original cancer or the development of a new cancer, assessing the psy-



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