Health and Life Domain Research Priorities in Children, Adolescents and Young Adults With Pediatric-Onset Spinal Cord Injury: A National Cross-Sectional Survey in England

Top Spinal Cord Inj Rehabil, 2022 · DOI: 10.46292/sci21-00053 · Published: July 1, 2022

Spinal Cord Injury Healthcare Pediatrics

Simple Explanation

This study identifies key health and life concerns of young people with spinal cord injuries (SCI) in England to guide future research. It uses surveys to gather priorities from individuals with pediatric-onset SCI and their caregivers. The surveys covered various aspects of health and life, such as physical function, pain, mood, and access to healthcare. Participants rated the importance of each domain for research. The results showed that research priorities varied by age group. Younger children focused on schooling and relationships, while adolescents and young adults prioritized health issues like spasms and pain.

Study Duration

March 2017 and October 2018

Participants

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%)

Evidence Level

Level 4: Cross-sectional survey

Key Findings

1
Parents/caregivers of 2- to 12-year-olds prioritized walking ability, spasms, and pain as top health research priorities, and physical function, home support services, and healthcare access as top life research priorities.
2
8- to 12-year-olds highlighted schooling, peer relationships, and general mood as their top research priorities.
3
Adolescents and young adults (13-25 years) with SCI mostly included health domains for their top 10 research priorities; spasms, pain, and pressure injuries were in the top three.

Research Summary

This cross-sectional survey identified health and life domain research priorities for children, adolescents, and young adults with pediatric-onset spinal cord injury (SCI) in England. Data were collected from five English spinal injury rehabilitation centers. The study found that research priorities varied across age groups. Younger children and their caregivers focused on mobility and daily functioning, while adolescents and young adults emphasized managing pain, spasms, and pressure injuries, along with healthcare access. The findings from this survey can help healthcare and research organizations develop targeted research programs and rehabilitation services that address the specific needs and concerns of young people with SCI.

Practical Implications

Targeted Research Programs

The findings can inform the development of tailored research programs addressing age-specific needs, such as mobility for younger children and pain management for adolescents.

Improved Rehabilitation Services

Rehabilitation services can be enhanced to focus on the identified priorities, ensuring comprehensive support for individuals with pediatric-onset SCI.

Stakeholder Engagement

Engaging stakeholders, including patients and caregivers, in the research process can lead to more relevant and impactful outcomes.

Study Limitations

1
The study did not provide participants with an overview of current evidence-based pediatric-onset SCI studies, which may have influenced their research priority rankings.
2
The study identified broad research areas, and future studies should characterize the specifics of each high-priority area.
3
The relatively small sample size precluded a stratified analysis of the data based on the neurological level and severity of SCI injury.

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