Needs and Research Priorities for Young People with Spinal Cord Lesion or Spina Biﬁda and Their Caregivers: A National Survey in Switzerland within the PEPSCI Collaboration

Children, 2022 · DOI: https://doi.org/10.3390/children9030318 · Published: February 27, 2022

Spinal Cord Injury Participation Neurology

Simple Explanation

This study explores what matters most to young people in Switzerland who have spinal cord injuries or spina bifida, as well as their parents. It looks at their quality of life, what they find important, and what research areas they think are most crucial. The research involved surveys asking about satisfaction, importance, research priorities, and quality of life. The results showed that young people and their parents don't always agree on what's most important, especially when it comes to research. The study emphasizes that when deciding what to research, it's important to listen to both the young people and their caregivers. This ensures that research addresses the issues that are most relevant to their lives.

Study Duration

April to November 2019

Participants

53 surveys from young people with SCI/D and SB with corresponding parent-proxy reports

Evidence Level

Cross-sectional survey

Key Findings

1
Young people with SCI/D reported a QoL sum score of 77%, while those with SB reported 73%. Parent-proxy reports were lower, at 70% for SCI/D and 64% for SB.
2
"Having fun", "relation to family members", and "physical functioning" were highly important for all young people.
3
"Physical functioning", "prevention of pressure injuries", "general health”, and “bowel management” received the highest scores for research priority in at least one of the subgroups.

Research Summary

This study aimed to understand the needs and research priorities of young people with spinal cord injuries/disorders (SCI/D) or spina bifida (SB) and their parents in Switzerland, as part of the international PEPSCI collaboration. The study found that young people and their parents often have different perspectives on quality of life and research priorities. Parents tend to underestimate the QoL of their children, and young people prioritize research topics differently. The study concludes that both young peoples’ and caregivers’ perspectives should be included in the selection of research topics to ensure relevance and address the most important needs.

Practical Implications

Patient-Centered Rehabilitation

Rehabilitation programs should be tailored to meet the specific needs of both SCI/D and SB patients, recognizing their differing priorities.

Involving Youth in Research

Researchers should actively involve young people with SCI/D and SB in the selection of research topics to ensure that studies address the issues that are most important to them.

Addressing Key Research Priorities

Future research should focus on areas such as physical functioning, prevention of pressure injuries, bowel management, and social participation to improve the quality of life for young people with SCI/D and SB.

Study Limitations

1
The response rate was about 30% on average, with a 50% higher response for the participants with SCI
2
The low number of participants, especially those with SCI/D, did not allow for complex statistical analyses
3
The sample group did not contain any individuals with SCI/D or SB younger than 3 years of age

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