ABSTRACT
Background: Although feedback from people with adult-onset spinal cord injury (SCI) has been considered in developing research programs, little is known about pediatric-onset SCI priorities. Objectives: To describe the health and life (H&L) domain research priorities of youth with pediatric-onset SCI living in England. Methods: Youth with pediatric-onset SCI (≥6 months) were recruited from five English rehabilitation centers and invited with their parents/caregivers to complete the age-appropriate surveys designed by the Pan-European Paediatric Spinal Cord Injury (PEPSCI) collaboration. Results: A total of 73 surveys were received (32 from participants with SCI and 41 from their parents/caregivers), providing information on 47 individuals with SCI: 2- to 7-year-olds (29.8%), 8- to 12-year-olds (19.2%), 13- to 17-year-olds (17.0%), and 18 to 25-year-olds (34.0%). The top three research priorities reported by parents/caregivers of 2- to 12-year-old and 13- to 25-year-olds were pain (81%/89%), physical function (91%/83%) and health care access (78%/78%). Eighty-nine percent of 8- to 12-year-olds emphasized schooling, peer relationships, and general mood as their research priorities. The top three research priorities for Health or Life domains reported by 13- to 25-year-olds included spasms (95%), pain (91%), pressure injuries (91%), health care access (83%), physical function (78%), and daily personal needs (74%). Conclusion: Although there should be an emphasis on addressing important life domain issues for 8- to 12-year-olds with SCI, adolescents and young adults mostly prioritized health domain research priorities in addition to health care access. This survey will aid health care and clinical research organizations to engage stakeholders to implement a comprehensive SCI research strategy in England for the pediatric population.
