• Smita Bhatia, MD, representing the Children’s Oncology Group;

• Mark Greenberg, MD, from the Pediatric Oncology Group of Ontario (POGO); and

• Merle McPherson, MD, MPH, from the Health Services and Resources Administration (HRSA), Maternal and Child Health Bureau, Division of Services for Children With Special Health Needs.

Margaret McManus of the Maternal & Child Health Policy Research Center addressed the Board at its July 2002 meeting regarding the financing and delivery of care to children with special health care needs.

Eric Trabert, a student at the University of Michigan School of Public Health, completed a review of programs providing follow-up care to cancer survivors in the summer of 2001 (see Chapter 5).

Invaluable insights of cancer survivors and their families were solicited through the internet by Nancy Keene (Keene, 2002), the co-author of Childhood Cancer Survivors: A Practical Guide to Your Future (Keene et al., 2000). Concerns related to cancer survivorship of consumers, health care providers, administrators, and others were also identified through a two-page inquiry placed in magazines and journals with a wide circulation (i.e., In Touch and Oncology News International, both published by PRR, Inc.).

The purpose of this report is to 1) characterize the medical and psychosocial consequences of surviving childhood cancer; 2) identify essential elements of quality care; 3) explore some of the social and economic consequences facing cancer survivors such as under-insurance and employment discrimination; 4) assess the status of applied clinical and health services research; and 5) propose policies to improve the quality of care and quality of life for childhood cancer survivors and their families.

Chapter 2 characterizes the many types of childhood cancer, the frequency with which they occur, the likelihood that treatment will result in survival at five years, and the prevalence of cancer survivors in the general population.

Chapter 3 describes the trajectory of cancer care and provides an overview of the treatments of childhood cancer that are associated with late effects.

Chapter 4 discusses late effects of treatment and disease that can affect survivors of childhood cancer into adulthood.

Chapter 5 defines appropriate care for survivors of childhood cancer and characterizes the cancer care infrastructure, including sites and providers of care.