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.

Automated summary

This study described the health and life domain priorities of youth with pediatric-onset spinal cord injury (SCI) and their parents/caregivers. The results showed that health domains were considered the top overall priorities for 13-25-year-olds, while life domains were the main concerns for 2-12-year-olds. This survey will aid rehabilitation professionals to implement a comprehensive SCI management program for the pediatric population.