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

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.

Pediatric health and life domain priorities: A national survey of people with spinal cord injury and their parents and caregivers.

CONTEXT/OBJECTIVE: No information is available regarding priorities for pediatric-onset spinal cord injury (SCI). This study described the Health and Life (H&L) domain priorities of youth with pediatric-onset SCI and their parents/caregivers living in Spain. DESIGN: A cross-sectional survey. SETTING: Two SCI rehabilitation centers. PARTICIPANTS: Sixty participants, youth with pediatric-onset SCI (n = 26) and parents/caregivers (n = 34). INTERVENTIONS: Not applicable. OUTCOME MEASURES: Median overall priorities calculated on the basis of importance, unhappiness, and research measured with a new survey of pediatric H&L domains and rated using a 5-point Likert Scale. RESULTS: A total of 60 surveys were received providing information on 35 individuals with SCI: 2-7-year-olds (25.7%), 8-12-year-olds (22.9%), 13-17-year-olds (31.4%), and 18-25-year-olds (20.0%). The top three overall H&L priorities reported by parents/caregivers of 2-12-year-olds were "parenthood expectations" (84%), "leg/foot movement" (83%), and "bladder" function (83%), compared to "dressing/undressing" (78%), "walking/ability to move" (77%) and "bladder" function (77%) rated for 13-25-year-olds. "Sit-to-stand" (79%), "leg/foot movement" (78%) and "arm/hand movement" (77%) were reported as priorities by 13-25-year-olds. The 13-25-year-olds highlighted "sit-to-stand" (100%), "eating/drinking" (54%), and "physical function" (94%) as their top unhappiness, importance, and research priorities, respectively. Significant differences between tetraplegia and paraplegia were found in "mobility in the community" (unhappiness item) for 13-25-years-old. CONCLUSION: Health domains were considered the top overall H&L priorities by parents/caregivers of 13-25-year-olds, compared to life domains reported for their 2-12-year-olds. This survey will aid rehabilitation professionals to engage stakeholders to implement a comprehensive SCI management program for the pediatric population.

Health and LifeDomain ResearchPriorities in Children, Adolescents and Young Adults With Pediatric-Onset Spinal Cord Injury: A National Cross-Sectional Survey in England.

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.