A – 52 Neuropsychological and Developmental Profiles in Pediatric Chiari Malformation: A Mixed-Methods Examination of Functioning and Family Experience

Objective Chiari malformation (CM) is a rare and understudied structural brain disorder that poses unique neuropsychological challenges in pediatric populations. Our study aimed to better understand the cognitive, behavioral, and developmental outcomes before or following decompression surgery intervention and how these challenges manifest in educational and daily functioning. Method This two-phase project combines a systematic literature review and ongoing survey data to examine cognitive profiles and lived experiences in children with CM. A mixed-methods survey was developed and administered to parents of children with CM (N=36 and ongoing). Participants were gathered through CM Facebook groups and doctor’s offices advertisements. The survey included DSM-5 Cross-Cutting Symptom Measures and qualitative items addressing educational access, medical care, and psychosocial functioning. Results A review of 14 peer-reviewed studies revealed consistent deficits in executive functioning, processing speed, and motor coordination, but limited data on behavioral health, emotional regulation, or adaptive functioning. Preliminary survey results indicate high rates of special education placement, persistent executive dysfunction, and behavioral challenges across both pre- and post-decompression presentations. Families reported difficulty accessing coordinated care, navigating state-line medical systems, and securing educational supports. Conclusion These findings highlight the need for integrated neuropsychological assessment in treatment planning and educational advocacy for children with CM. This work informs interdisciplinary models of care and underscores the value of understanding family context in rare neurological conditions.