Spinal dysraphism in adulthood: do they have different symptoms and outcomes? Evaluating the impact on the Quality of Life and the need for transitional care from pediatric to adult population.

INTRODUCTION: Spinal lipomas are common forms of closed spinal dysraphism, typically diagnosed in childhood but sometimes remaining unrecognized until adulthood. Adult presentation often includes pain, sensory disturbances, and urogenital dysfunction. While pediatric surgical management is well studied, adult outcomes, especially psychosocial ones, remain poorly understood. This study evaluates surgical, neurological, and psychosocial outcomes in adults undergoing their first surgery, comparing them with those of patients treated in childhood and followed into adulthood. It also emphasizes the importance of transitional care across the lifespan. METHODS: This retrospective cohort study included 24 patients treated at a single institution: 12 adults (SDA) undergoing first-time surgery from 2022 to 2023, and 12 historical controls (PSD) treated in childhood (2000 to 2005). Pre- and postoperative data were collected using a 14-item questionnaire assessing neurological, functional, and psychosocial outcomes. Statistical comparisons were performed within and between groups. RESULTS: The median age at surgery was 30 years in SDA vs. 2 years in PSD. 75% of SDA patients had never been previously diagnosed with spinal dysraphism. Only urinary continence showed significant improvement neurologically in SDA patients (p = 0.025). However, psychosocial outcomes including pain, quality of life, social participation, and self-esteem, significantly improved postoperatively in the adult group. No surgical complications occurred in SDA; two CSF leaks were observed in PSD. Comparison of long-term outcomes revealed similar results across groups, except for a higher level of self-esteem in PSD patients (p = 0.039). CONCLUSION: Surgical treatment of spinal lipomas in adulthood can provide meaningful symptomatic and psychosocial benefits, even without gross-total resection. This study underscores the limitations of viewing spinal dysraphism through a strict pediatric-adult binary and highlights the need for individualized, stage-specific care. The findings advocate for structured, lifelong transitional care pathways that integrate psychological and social support, addressing the full spectrum of patient well-being.