chosocial needs of survivors and their families, monitoring growth and maturation, counseling regarding preventive health, and testing for specific risk factors (e.g., exposure to hepatitis C following blood transfusions) or late effects (e.g., heart abnormalities, cognitive dysfunction, fertility impairment). Not well understood, however, is the optimal periodicity of follow-up contact, the value of specific screening/monitoring tests, and the effectiveness of interventions to ameliorate some late effects. Follow-up protocols are available, but they have generally been developed by individual institutions and vary in their recommendations. The lack of clarity regarding the effectiveness of interventions contributes to problems with health insurance reimbursement.
Recommendation 1: Develop evidence-based clinical practice guide lines for the care of survivors of childhood cancer.
The National Cancer Institute should convene an expert group of consumers, providers, and researchers to review available clinical practice guidelines and agree upon an evidence-based standard for current practice. For areas where bodies of evidence have not been rigorously evaluated, the Agency for Healthcare Research and Quality (AHRQ) Evidence Practice Centers (EPCs) should be charged to review the evidence. When evidence upon which to make recommendations is not available, the expert group should identify areas in need of research.
In some ways, the follow-up of childhood cancer survivors is made easier by the extent to which children with cancer are treated in specialized centers of care. As many as 50 to 60 percent of children with cancer are initially treated in specialized cancer centers, but only an estimated 40 to 45 percent are receiving follow-up care in specialized clinics (Oeffinger, 2002). Institutions that are members of the National Cancer Institute-funded pediatric cooperative group, the Children’s Oncology Group (COG), are required to have on-site follow-up programs, but relatively few of them appear to have comprehensive, multidisciplinary programs. The Board has developed a description of the functions of an ideal follow-up system for survivors of childhood cancer (Box S.1), but a minimum set of standards is needed to guide institutions in their development of programs to meet the wide-ranging needs of childhood cancer survivors.
According to the Board’s review, four supportive care components are especially important in follow-up programs: 1) services to address the psychological implications of cancer for survivors and their families; 2) educational support through school transition programs; 3) personnel to assist