Long-term follow-up of pediatric cancer survivors: Education, surveillance, and screening



Cancer and its treatment predispose childhood cancer survivors to chronic or late occurring health problems that may not become clinically significant until many years after therapy. Frequently, long-term survivors of childhood cancer report late cancer-related effects that diminish quality of life and increase the risk of early mortality. Risk-based health care that involves a personalized plan for surveillance, screening, and prevention is recommended to reduce cancer-related morbidity in childhood cancer survivors. To implement optimal risk-based care, the survivor and health care provider must have accurate information about cancer diagnosis, treatment modalities, and potential cancer-related health risks to guide screening and risk-reducing interventions. However, previous studies evaluating health knowledge of childhood cancer survivors demonstrate noteworthy deficits and misperceptions about their cancer diagnosis, treatment, and cancer-related health risks. In addition, because of the relative rarity of childhood cancer, many health care providers lack familiarity with cancer-related health risks and risk-reduction methods relevant for this population. To correct these deficits, the Scottish Intercollegiate Guidelines Network (SIGN) and the Children's Oncology Group (COG) developed clinical practice guidelines to foster appropriate risk-based survivor care. Herein, we discuss the development, benefits, and limitations of the SIGN and COG guidelines and the foundation they provide for standardizing long-term follow-up care of the ever-growing vulnerable population of childhood cancer survivors. Pediatr Blood Cancer 2006;46:149–158. © 2005 Wiley-Liss, Inc.