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Research Priorities of the Pediatric Spinal Cord Injury Population: An International Insight for Rehabilitation Care.
- Source :
-
Pediatric Neurology . Feb2024, Vol. 151, p121-130. 10p. - Publication Year :
- 2024
-
Abstract
- 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. 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. 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." 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. [ABSTRACT FROM AUTHOR]
- Subjects :
- *SPINAL cord injuries
*PHYSICAL mobility
*FOOT movements
*CAREGIVERS
*MEDICAL care
Subjects
Details
- Language :
- English
- ISSN :
- 08878994
- Volume :
- 151
- Database :
- Academic Search Index
- Journal :
- Pediatric Neurology
- Publication Type :
- Academic Journal
- Accession number :
- 174709261
- Full Text :
- https://doi.org/10.1016/j.pediatrneurol.2023.11.010