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

Abstract

10047 Background: 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 (n = 197) of the Children’s Oncology Group (COG) in the US. The survey asked about the size of the childhood brain tumor program, activities of the LTFU program, and barriers to follow-up. Results: 143 (72.6%) institutions returned surveys. Variation existed in the size of brain tumor centers, including <4 brain tumor patients/year (15.7%); 5 - 14 patients/year (41.0%); 15 - 29 patients/year (20.1%); and 30+ patients/year (23.1%). Care for brain tumor patients who were < 18 years old at diagnosis but are now > 21 years old was provided at a designated LTFU clinic for young adults (24.8%), neuro-oncology clinic (21.7%), pediatric oncology clinic (19.4%), adult neuro-oncology program (10.9%), or by other means (23.3%). 90.4% of programs reported integrating COG LTFU Guidelines into the care of their brain tumor survivors. Among medulloblastoma survivors, great variability existed among institutions’ reported use of growth hormone. Larger programs reported higher frequencies of growth hormone use among medulloblastoma survivors than smaller programs (p = < 0.001). Variability existed with regard to interval until discontinuation of surveillance MRIs among medulloblastoma survivors: < 5 years = 20.6%; 6 - 10 years = 37.4%; 11 - 20 years = 17.6%; and never = 24.4%. Among perceived barriers to care, respondents cited lack of insurance (35.3%), lack of funding or dedicated time for providers (24.4%), patients’ uncertainty or unwillingness to follow-up (22.7%), or patients being lost to follow-up (17.6%). Conclusions: Considerable variability exists among LTFU programs for adult survivors of childhood brain tumors. We recommend integration of the COG LTFU Guidelines and efforts to eliminate barriers to follow-up. No significant financial relationships to disclose.