Advances in transplantation techniques and supportive care practices have led to steadily improving HCT survival rates for pediatric recipients. As HCT recipients survive long-term, the risk for developing late complications based on their pre-, peri-, and post-transplant exposures and individual risk factors increases.  Research has shown that after HCT, 93% of pediatric recipients have at least 1 adverse effect after 7 years of follow-up.[1] This high burden underscores the need for monitoring of conditions with significant morbidity to promote early detection and treatment.  Thus it is critically important that there are guidelines and training on the follow-up care of these survivors at risk for post-HCT complications.

Long-term, HCT recipients may no longer be under the care of their transplant team, returning to community health-care providers for their primary care. The risks and range of complications associated with HCT continues to evolve as new practices are continuously introduced. Keeping up with the latest care recommendations can challenge providers with limited exposure with patients after HCT to provide optimal care when these patients are seen in their practices. Their follow-up care may necessitate a number of disciplines being involved, dependent on the availability of providers and specialized care required.

Results from 1,110 general internists who expressed willingness to care for childhood cancer survivors revealed that only 37% and 27% reported being “somewhat comfortable” or “comfortable” caring for survivors of Hodgkin lymphoma and acute lymphoblastic leukemia, respectively.  Only 12% reported general familiarity with surveillance guidelines for childhood cancer survivors and 72% had never received a patient treatment summary.

A survey with 351 practicing internal medicine and family practice physicians was done by Simi et al. to identify barriers to providing late effects screening and useful tools for caring for pediatric survivors in their practice. Primary care providers were found to have: low level of awareness of late effects of cancer-directed therapy, inadequate training to recognize late effects, infrequent utilization of guidelines and the absence of cancer treatment summaries and survivorship care plans for patients (84-86% never received information).

To address follow-up care needs, several groups have developed screening and long-term follow up recommends for pediatric patients, including the Children’s Oncology Group.[2] These guidelines are risk-based and exposure- related.  The guidelines include a patient-specific identification tool to define and track individual treatment exposures to document their course of treatments and follow-up care.