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

Abstract

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. Method The priority setting partnership 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 inputs, 128 were beyond the scope of this study. The remaining 303 were merged to formulate 57 questions. The literature review found one questions 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 work reveals issues that persons living with SCI, relatives to persons with SCI as well as health care professionals and personal care attendants working with SCI find difficult to get answered. The highest prioritised question in this study is to address specialist SCI care and rehabilitation, followed by questions addressing physical health. Other topics include Mental health, Ageing with SCI, Community support and personal care assistance, and Body functions. This result can guide SCI researchers to design appropriate studies for the questions that matter most to the people with SCI.