Both prospective and retrospective studies are needed to quantify the incidence and prevalence of adverse sequelae in representative cohorts of survivors. Establishing a population-based surveillance system for childhood cancer would facilitate population-based research efforts.
Studies are needed of new treatments to reduce the occurrence of late effects among childhood cancer survivors and of interventions designed to prevent or ameliorate the consequences of late effects associated with current treatments.
Research is needed on the long-term social, economic, and quality of life implications of cancer on survivors and their families.
The COG should be supported in adding long-term follow-up to its clinical trials. There is an obligation to evaluate late effects of therapeutic interventions under study. Prospective clinical assessments are needed to learn about late effects.
The Childhood Cancer Survivor Study should be fully supported and researchers encouraged to use data that have been collected. Resources are needed to assure completeness of follow-up of survivors and to conduct methodologic studies (e.g., assessment of the adequacy of sibling controls for psychosocial and health outcomes).
Opportunities to study late effects within systems of care that have a medical record system that captures primary and specialty care should be explored (e.g., through the health maintenance organization [HMO] network, an NCI-supported research consortium of HMOs with population-based research program).
As evidence emerges regarding late effects, research institutions should have systems in place to disseminate information to survivors who remain under their care, and to providers of follow-up care, in both specialty and primary care settings.
The Board has proposed this set of recommendations in the hopes of improving the outlook and quality of life of the estimated 270,000 Americans who have survived childhood cancer. Adoption of these recommendations would be responsive to the concerns of the 178,000 individuals estimated to be experiencing late effects of their disease and treatment as well as the many survivors who remain at risk for such effects. The Board has concluded that the oncology and larger health care community is not yet fully prepared to address the unique health and psychosocial needs of this population. Recommended improvements in health care delivery, education and training, and research could help complete the triumph of the success of childhood cancer treatment and extend the horizon of success beyond 5-year survival to a life free of disability and disease.