Children (Nov 2024)

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

  • Marta Ríos-León,
  • Bashak Onal,
  • Juan Carlos Arango-Lasprilla,
  • Marika Augutis,
  • Allison Graham,
  • Erin Hayes Kelly,
  • Antonis Kontaxakis,
  • Elisa López-Dolado,
  • Anke Scheel-Sailer,
  • Svetlana Valiullina,
  • PEPSCI Collaboration,
  • Julian Taylor

DOI
https://doi.org/10.3390/children11121415
Journal volume & issue
Vol. 11, no. 12
p. 1415

Abstract

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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.

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