The National Cancer Policy Board (the Board) was established in March 1997 at the Institute of Medicine (IOM) and National Research Council to address issues that arise in the prevention, control, diagnosis, treatment, and palliation of cancer. The 21-member board includes health care consumers, providers, and investigators in several disciplines (see membership roster). This report is part of a Board initiative to address issues of concern for cancer survivors with an emphasis on what happens following the primary treatment of cancer. The Board’s 1999 report, Ensuring Quality Cancer Care (Institute of Medicine, 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 issues related to the delivery of cancer care to children.

In its deliberations, the Board has applied the definition of cancer survivorship used by the National Cancer Institute’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.” (, accessed March 7, 2003). This report, which focuses on childhood cancer survivors and their care after primary treatment,1 will be followed by a companion report addressing issues of relevance to survivors of adult cancer. Some policy issues are common to both groups (e.g., insurance and employment concerns); however, unique features of pediatric treatment and health care delivery systems led to the decision to publish separate reports on childhood and adult cancer survivorship. The Board report Improving Palliative Care for Cancer (Institute of Medicine, 2001), addressed the need for quality care at the end of life for those who die from cancer, including children. A recent IOM report, When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, further examines policies to improve care (Institute of Medicine, 2002). A Board report related to survivorship will be issued later in 2003 based, in part, on a two-day IOM workshop held October 28-29, 2002, “Meeting Psychosocial Needs of Women With Breast Cancer,” with support from the Longaberger Company through the American Cancer Society.

Several background papers commissioned by the Board were essential to this report:2


In this report, childhood refers to individuals under age 20.


These papers are available at

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