Priorities of the Pediatric Spinal Cord Injury Population: An International Study on Patient-Reported Outcome Measures.

Background/objectives: Overall priorities of the international pediatric-onset spinal cord injury (SCI) population are unknown. The purpose was to describe and compare Life and Health (L&H) domain overall priorities of European youth with SCI and their parents and caregivers (P&C).

Methods: A survey with a cross-sectional design, prepared by the PEPSCI Collaboration, was conducted in six European countries. In total, 202 participants, including youth with SCI (n = 101) and their P&C (n = 101), were included. Overall priorities were calculated based on unhappiness, importance, and research.

Results: The sample included youth aged 8-12 years (30.7%) and 13-25 years (69.3%; 38.6% 13-17-year-olds and 30.7% youth aged 18-25 years), in addition to their P&C. The top three L&H priorities highlighted by P&C of the youth aged 8-12 years were "bladder" function (78%), "leg/foot movement" (77%), or "bowel" function (74%), compared with "leg/foot movement" (79%), "sit-to-stand" (76%), or "walking/ability to move" (75%) reported by P&C of the youth aged 13-25 years. The youth aged 13-25 years considered "leg/foot movement" (68%), "bowel" (66%), or "bladder" function (65%) as priorities. The top 10 priorities highlighted by the youth aged 13-25 years compared to the top 10 priorities rated by P&C were issues related to "personal needs". Nevertheless, "pressure injuries", "pain", "bowel function", or "mobility in the community" were highlighted as top preferences of priorities for the youth aged 13-25 years compared to their P&C.

Conclusions: Adolescents/young adults highlighted health domain priorities compared with their P&C, who equally considered L&H domains. Life domains, which were previously unaddressed, were highlighted by P&C, including "adulthood expectations" and "parenthood expectations". This survey will promote the involvement of stakeholders for comprehensive rehabilitation management for this population.