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

Abstract

Study DesignMixed-method consensus development project.ObjectiveTo identify the top ten research priorities for spinal cord injury (SCI).SettingNationwide in Sweden in 2021–22.MethodThe 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.ResultsIn 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.ConclusionThis 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.

Knowledge Translation Gaps that Need to be Bridged to Enhance Life for People with Spinal Cord Injury

“…Likewise, there is also, reasonably a need for knowledge for other groups of people meeting people with SCI, 4,5 such as relatives, health professionals and personal care assistants * as well as authorities, decision-makers, employers, architects and city planners etc. Our recent work, 7 shows that more evidence is needed regarding the provision of specialist expertise in SCI by care services and to what extent they are therefore able to respond to the needs of people living with SCI.…”

“…addressing general needs not related to needs for knowledge). The statements where further complemented with 64 statements from the PSP question 7 (where these were asked for issues which were difficult to find answers to). Thus, this report is based on a total of 459 statements included in this study.…”

Knowledge translation gaps that need to be bridged to enhance life for people with spinal cord injury

“…Likewise, there is also, reasonably a need for knowledge for other groups of people meeting people with SCI [ 4 , 5 ], such as relatives, health professionals and personal care assistants 1 as well as authorities, decision-makers, employers, architects and city planners etc. Our recent work [ 7 ], shows that more evidence is needed regarding the provision of specialist expertise in SCI by care services and to what extent they are therefore able to respond to the needs of people living with SCI.…”

“…The Swedish need assessment project comprises three parts: (a) needs to be met; (b) questions to be answered; (c) knowledge required. In part (b), which is the PSP we have identified research priorities [ 7 ] (e.g. knowledge gaps); while in part (c), presented here, we report results from an online survey addressing knowledge translation gaps in order to shed light on the knowledge that is available yet which does not reach out.…”

“…However, 84 statements were removed due to beyond the scope of the study (e.g., addressing general needs not related to needs for knowledge). The statements where further complemented with 64 statements from the PSP question [ 7 ] (where these were asked for issues which were difficult to find answers to). Thus, this report is based on a total of 459 statements included in this study.…”