QOL-04. INFLUENCE OF FAMILY, SCHOOL, AND HOSPITAL SYSTEMS IN SUPPORTING SURVIVORS OF PEDIATRIC BRAIN TUMORS WITH NEUROCOGNITIVE LATE EFFECTS. (4th December 2020)

• Record Type: Journal Article
• Authors: Moscato, Emily; Gies, Lisa; Miley, Aimee; Salloum, Ralph; Wade, Shari
• Is Part Of: Neuro-oncology. Volume 22(2020)Supplement 3
• Page Start: iii431
• Page End: iii432
• Publication Date: 2020-12-04
• Subjects: Brain Neoplasms -- Periodicals; Brain -- Tumors -- Periodicals; Brain -- Cancer -- Periodicals; Nervous system -- Cancer -- Periodicals; 616.99481
• DOI: 10.1093/neuonc/noaa222.669
• Languages: English
• ISSNs: 1522-8517

Abstract

Abstract: OBJECTIVE: Pediatric brain tumor survivors (PBTS) are at risk for developing neurocognitive late effects that may interfere with academic and adaptive functioning. To mitigate the potential impact, some PBTS may implement strategies independently, while others may rely on system-level support from family, school, or hospital systems. Given the limited knowledge on survivor and family perspectives of these supports, we conducted a mixed-methods study involving PBTS and their caregivers to examine the influence of family, educational, and hospital supports, and identify areas of unmet need. PARTICIPANTS AND METHODS: PBTS ( N =56, M age =18.12, range=10–25) completed questionnaires on academic accommodations. Medical chart reviews provided diagnosis and treatment information. A subset of families, who did not significantly differ from the larger sample on demographics, completed qualitative interviews ( N =25). Three coders identified themes separately for parents and survivors and reached consensus (kappa's > .78) using thematic content analysis. RESULTS: Families emphasized the role of family support, including providing individualized help, setting up a structured learning environment, and suggesting metacognitive strategies. Parents also emphasized how they have adjusted their expectations. At school, 53% reported an individualized education plan. Formal accommodations (e.g., modified coursework, small group instruction, extra time) were helpful, yet some noted barriers, including embarrassment and lack of follow-through. Survivors emphasized the value of informal accommodations. Families described unmet needs related to connecting with other survivors, navigating community and educational resources, and transitioning to adulthood. CONCLUSIONS: PBTS seem to rely on systems-level supports to mitigate neurocognitive effects. Future work should strengthen communication between systems and adult transition services.