Survey of long-term follow-up programs in the United States for survivors of childhood brain tumors

Introduction. Despite recognition that childhood brain tumor survivors often suffer multiple late effects following therapy, little is known regarding the long-term follow-up (LTFU) programs for these patients. Methods. A 16-question survey was mailed to member institutions of the Children's Oncology Group in the United States. Institutions were asked about the size of their brain tumor program, activities of the LTFU programs and perceived barriers to follow-up. Results. One hundred forty-five (74%) of 197 institutions returned surveys. Care for patients <21 years old at diagnosis who are >2 years following completion of therapy was provided at a designated neuro-oncology LTFU clinic (31.2%), a general LTFU program for childhood cancer survivors (30.4%), or a general pediatric oncology program (29.7%). Institutions with a neurooncology LTFU clinic were more likely to use neuro-psychological testing following radiation therapy (P = 0.001), have longer duration of continued surveillance imaging (P = 0.02), use growth hormone replacement for medulloblastoma survivors (P < 0.001) and continue the use of growth hormone into adulthood (P = 0.05) than those with a general pediatric oncology program. Perceived barriers to care of brain tumor survivors included limited access and lack of insurance (32.1%), lack of funding or dedicated time for providers (22.9%), patients' uncertainty about need to follow-up (20.6%), and patients' desire to not be followed in a pediatric cancer program (12.2%). Conclusions. Considerable variation exists across institutions in the United States in the delivery of follow-up care for survivors of childhood brain tumors. We encourage additional investigation to better define and implement optimal follow-up care for childhood brain tumor survivors.