Research priorities to enhance life for people with spinal cord injury: a Swedish priority setting partnership

Spinal Cord, 2023 · DOI: https://doi.org/10.1038/s41393-023-00913-2 · Published: July 20, 2023

Spinal Cord Injury Healthcare Rehabilitation

Simple Explanation

This study aimed to identify the top research priorities for improving the lives of people with spinal cord injuries (SCI) in Sweden. The project involved surveys and workshops with people living with SCI, their relatives, health professionals, and personal care assistants to gather their perspectives. The top priorities identified include specialist SCI care, pain management, and mental health support, highlighting the need for comprehensive care and research in these areas.

Study Duration

2021-2022

Participants

243 in initial survey, 272 in interim survey, 23 in final workshop. People living with SCI, relatives, health professionals, and personal care assistants.

Evidence Level

Not specified

Key Findings

1
The top research priority is the need for specialist care from the emergency stage through rehabilitation and lifelong follow-up.
2
Effective support and treatment for preventing and managing pain is a high research priority.
3
There is a significant need for research into effective treatments for preventing and managing gastrointestinal problems in people with SCI.

Research Summary

This study used a mixed-method approach to identify the top ten research priorities for spinal cord injury (SCI) in Sweden, involving people with SCI, their relatives, health professionals, and personal care assistants. The process involved identifying unanswered questions through surveys and prioritizing them through interim surveys and a final prioritization workshop. The top priorities included specialist SCI care, pain management, mental health support, and addressing the implications of age-related service restrictions, highlighting a comprehensive set of needs for the SCI community.

Practical Implications

Guide Research

The findings can guide researchers to design appropriate studies relevant to people with SCI.

Inform Policy

The results can inform healthcare policy and resource allocation to address the most pressing needs of the SCI community.

Improve Care

The identification of key research priorities can lead to improved care and support for people living with SCI.

Study Limitations

1
Representation is questionable at some stages.
2
The inputs in the first survey were of very different kinds.
3
Focusing on the questions ranked from 8th to 12th was most important for the participants, while the priorities ranked in the first seven were discussed less.

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