Priorities of the Pediatric Spinal Cord Injury Population: An International Study on Patient-Reported Outcome Measures

Children, 2024 · DOI: 10.3390/children11121415 · Published: November 23, 2024

Spinal Cord Injury Pediatrics Rehabilitation

Simple Explanation

This study investigates the priorities of young people with spinal cord injuries (SCI) and their parents/caregivers (P&C) in Europe. It looks at what is most important to them regarding their health and life, such as mobility, bladder function, and social expectations. The study found that priorities can differ between young people with SCI and their P&C, and also between different age groups. For example, parents of younger children focused more on bladder function, while young adults with SCI prioritized mobility in the community. Understanding these priorities can help healthcare professionals create better rehabilitation programs that address the specific needs of young people with SCI, improving their overall quality of life.

Study Duration

March 2017–April 2021

Participants

202 participants: youth with SCI (n = 101) and their P&C (n = 101)

Evidence Level

Cross-sectional survey

Key Findings

1
Parents/caregivers of younger children (8–12 years) with SCI prioritized “bladder” function, “leg/foot movement”, and “bowel” function.
2
Parents/caregivers of older youth (13–25 years) prioritized “leg/foot movement”, “sit-to-stand”, and “walking/ability to move”.
3
Adolescents and young adults (13–25 years) with SCI prioritized “leg/foot movement”, “bowel”, or “bladder” function.

Research Summary

This international study explored the life and health priorities of pediatric-onset spinal cord injury (SCI) patients and their parents/caregivers (P&C) in Europe. The study identified key differences in priorities between age groups and between patients and their P&C, highlighting the importance of considering individual perspectives in rehabilitation management. The findings suggest that rehabilitation programs should be tailored to address the specific needs and priorities of young people with SCI, focusing on both health and life domains.

Practical Implications

Tailored Rehabilitation Programs

Rehabilitation programs should be customized to meet the specific age-related needs and priorities of young individuals with SCI and their caregivers.

Focus on Mobility and Independence

Address mobility issues, including leg/foot movement, sit-to-stand ability, and community mobility, to promote independence and participation in daily activities.

Address Psychosocial Needs

Consider the psychosocial challenges faced by young people with SCI, such as adulthood expectations, parenthood expectations, and peer interaction, and integrate interventions to support their emotional and social well-being.

Study Limitations

1
The study only addressed broad life and health areas.
2
Reported L&H priorities could also be affected by how children accept their circumstances
3
Future research should develop an in-depth investigation into the impact of each area of priority

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