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

ABSTRACT

STUDY DESIGN: Mixed-method consensus development project. OBJECTIVE: To identify the top ten research priorities for spinal cord injury (SCI). SETTING: Nationwide in Sweden in 2021-22. METHODS: The PSP process proposed by the James Lind Alliance was used. It comprises two main phases question identification and priority selection. People living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI were included. RESULTS: In the first phase, 242 respondents provided 431 inputs addressing potentially unanswered questions. Of these, 128 were beyond the scope of this study. The remaining 303 were merged to formulate 57 questions. The literature review found one question answered, so 56 questions proceeded to the prioritisation. In the second phase, the interim prioritisation survey, 276 respondents ranked the 56 questions. The top 24 questions then proceeded to the final prioritisation workshop, at which 23 participants agreed on the top ten priorities. CONCLUSIONS: This paper reveals issues that people living with SCI, relatives of people with SCI as well as health professionals and personal care assistants working with people with SCI find difficult to get answered. The top-priority questions for people living with SCI in Sweden concern specialist SCI care and rehabilitation, followed by a number of questions addressing physical health. Other topics, from the 56 key questions include Mental health, Ageing with SCI, Community support and personal care assistance, and Body functions. This result can guide researchers to design appropriate studies relevant to people with SCI. SPONSORSHIP The project was funded by the Gothenburg Competence Centre for Spinal Cord Injury and the Swedish Association for Survivors of Accident and Injury (RTP).