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. 2024 Feb:151:121-130.
doi: 10.1016/j.pediatrneurol.2023.11.010. Epub 2023 Dec 1.

Research Priorities of the Pediatric Spinal Cord Injury Population: An International Insight for Rehabilitation Care

Marta Ríos-León  1 , Bashak Onal  2 , Juan Carlos Arango-Lasprilla  3 , Marika Augutis  4 , Allison Graham  5 , Erin Hayes Kelly  6 , Antonis Kontaxakis  7 , Elisa López-Dolado  8 , Anke Scheel-Sailer  9 , Svetlana Valiullina  10 ; PEPSCI Collaboration; Julian Taylor  11
Collaborators, Affiliations

Research Priorities of the Pediatric Spinal Cord Injury Population: An International Insight for Rehabilitation Care

Marta Ríos-León et al. Pediatr Neurol. 2024 Feb.

Abstract

Background: Although feedback from people with adult-onset spinal cord injury (SCI) has been considered for new rehabilitation programs, little is known about the priorities of the pediatric-onset SCI population. This study describes and compares health and life (H&L) domain research priorities of youth with pediatric-onset SCI and their parents/caregivers.

Methods: A cross-sectional survey, designed by the Pan-European Paediatric Spinal Cord Injury (PEPSCI) Collaboration, was performed at six European countries. Dyad data from 202 participants, youth with pediatric-onset SCI (n = 101) and their parents/caregivers (n = 101), were analyzed with the PEPSCI H&L domain surveys.

Results: The cohort was composed of 8 to 12-year-olds (30.7%), 13 to 17-year-olds (38.6%), and 18 to 25-year-olds (30.7%). The top three H&L domain research priorities reported by parents/caregivers of 8 to 12-year-olds were "walking/ability to move" (91%), "bladder" function (90%), and "general health/feel" (89%), compared with "physical function" (93%), "general health/feel" (90%), and "walking/ability to move" (89%) rated by parents/caregivers of 13 to 25-year-olds. "Bowel" function (85%), "leg/foot movement" (84%), and "bladder" function (84%) were reported as priorities by 13 to 25-year-olds, whereas "physical function" (84%), "experience at school" (83%), and "general mood" were highlighted by 8 to 12-year-olds. The top 10 priorities preferred by 13 to 25-year-olds when compared with the top 10 priorities reported by their parents/caregivers, included problems related to "bowel" and "pain."

Conclusions: Health domain research priorities were highlighted by 13 to 25-year-olds, compared with their parents/caregivers who equally identified H&L domains. This survey will aid health care and clinical research organizations to engage stakeholders to implement a comprehensive research strategy for the pediatric SCI population.

Keywords: Adolescent; Child; Life and health domains; Research priorities; Spinal cord injuries.

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Conflict of interest statement

Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

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