Background: The objective of this study was to provide a detailed description of comprehensive long-term follow-up (LTFU) programs for pediatric cancer survivors.
Methods: Program directors from 24 comprehensive LTFU programs in the U.S. and Canada completed a 6-page survey that provided details in 5 categories: description of the program, perceived benefits and strengths of the program, barriers to the development and use of the program, methods to improve the program, and an ideal model of care for pediatric cancer survivors.
Results: Participants identified the following primary benefits to health care delivered to survivors through LTFU programs: health care delivered by clinicians familiar with long-term risks of survivors, provision of risk-based screening and surveillance for late effects, and targeted education for risk reduction and healthy lifestyles. Key barriers to the functioning of LTFU programs included system-driven and patient/survivor-driven factors. System-driven factors included inadequate resources and finances to sustain programs, low institutional commitment toward the provision of survivorship care, lack of capacity to care for the growing population of survivors, and difficulties with ongoing communication with community physicians. Survivor-driven barriers included lack of interest and lack of awareness of cancer-related risks.
Conclusions: This report describes the frequency, content, and setting of follow-up care delivered by pediatric comprehensive LTFU programs. Critical challenges as survivorship care evolves will include integrating a structured process of program evaluation and building capacity for care.