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. 2023 Jun 1;6(6):e2316383.
doi: 10.1001/jamanetworkopen.2023.16383.

Partnering With Patients, Caregivers, and Clinicians to Determine Research Priorities for Concussion

Martin H Osmond  1   2 , Elizabeth Legace  2 , Peter J Gill  3   4 , Rhonda Correll  2 , Katherine Cowan  5 , Jennifer E Dawson  2 , Randene Duncan  6 , Erin Fox  6 , Kanika Gupta  6 , Ash T Kolstad  6   7   8   9 , Lisa Marie Langevin  8   10 , Colin Macarthur  3   4 , Rosemary Macklem  6 , Kinga Olszewska  6   11 , Nick Reed  12 , Roger Zemek  1   2 ; Canadian Traumatic Brain Injury Research Consortium
Collaborators, Affiliations

Partnering With Patients, Caregivers, and Clinicians to Determine Research Priorities for Concussion

Martin H Osmond et al. JAMA Netw Open. .

Abstract

Importance: Identifying research priorities of patients with concussion, their caregivers, and their clinicians is important to ensure future concussion research reflects the needs of those who will benefit from the research.

Objective: To prioritize concussion research questions from the perspectives of patients, caregivers, and clinicians.

Design, setting, and participants: This cross-sectional survey study used the standardized James Lind Alliance priority-setting partnership methods (2 online cross-sectional surveys and 1 virtual consensus workshop using modified Delphi and nominal group techniques). Data were collected between October 1, 2020, and May 26, 2022, from people with lived concussion experience (patients and caregivers) and clinicians who treat concussion throughout Canada.

Exposures: The first survey collected unanswered questions about concussion that were compiled into summary questions and checked against research evidence to ensure they were unanswered. A second priority-setting survey generated a short list of questions, and 24 participants attended a final priority-setting workshop to decide on the top 10 research questions.

Main outcomes and measures: Top 10 concussion research questions.

Results: The first survey had 249 respondents (159 [64%] who identified as female; mean [SD] age, 45.1 [16.3] years), including 145 with lived experience and 104 clinicians. A total of 1761 concussion research questions and comments were collected and 1515 (86%) were considered in scope. These were combined into 88 summary questions, of which 5 were considered answered following evidence review, 14 were further combined to form new summary questions, and 10 were removed for being submitted by only 1 or 2 respondents. The 59 unanswered questions were circulated in a second survey, which had 989 respondents (764 [77%] who identified as female; mean [SD] age, 43.0 [4.2] years), including 654 people who identified as having lived experience and 327 who identified as clinicians (excluding 8 who did not record type of participant). This resulted in 17 questions short-listed for the final workshop. The top 10 concussion research questions were decided by consensus at the workshop. The main research question themes focused on early and accurate concussion diagnosis, effective symptom management, and prediction of poor outcomes.

Conclusions and relevance: This priority-setting partnership identified the top 10 patient-oriented research questions in concussion. These questions can be used to provide direction to the concussion research community and help prioritize funding for research that matters most to patients living with concussion and those who care for them.

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Conflict of interest statement

Conflict of Interest Disclosures: Dr Osmond reported receiving grant funding from the Canadian Institutes of Health Research (CIHR), the Ministry of Health of Ontario, and the Children’s Hospital of Eastern Ontario (CHEO) Research Institute during the conduct of the study. Dr Gill reported receiving grant funding from the Physicians’ Services Incorporated Foundation, the CIHR, and the Hospital for Sick Children and reimbursement of expenses to attend meetings from the CIHR Institute of Human Development, Child and Youth Health, and the EBMLive Steering Committee outside the submitted work. Dr Duncan reported receiving an honorarium ($200 gift card to Indigo) for contributions to the priority-setting partnership project from the CHEO Research Institute during the conduct of the study. Mr Kolstad reported receiving funding from the CIHR Frederick Banting and Charles Best Doctoral Scholarship and the University of Calgary Eyes High Doctoral Recruitment Scholarship and being a member of the Youth Advisory Council for the CIHR’s Institute of Human Development Child and Youth Health. Dr Reed reported being a minority shareholder in 360 Concussion Care; serving as an investigator for a multicenter study funded by the National Football League (NFL) Scientific Advisory Board; receiving grant funding from the CIHR and Special Olympics Canada; holding a Canada Research Chair (Tier 2) in pediatric concussion; and serving as an executive board member for the International Paediatric Brain Injury Society. Dr Zemek reported receiving financial support through competitively funded research grants from the CIHR, the Ontario Neurotrauma Foundation, the Physician Services Incorporated Foundation, the CHEO Foundation, the Ontario Brain Institute, the NFL, the Ministry of Health of Ontario, Public Health Agency of Canada, Health Canada, Parachute Canada and Ontario SPOR Support Unit; receiving support from a tier 1 Clinical Research Chair in Pediatric Concussion from University of Ottawa; serving on the board of directors for the North American Brain Injury Society, which is an unpaid volunteer role; and being a founding partner and a minority shareholder of 360 Concussion Care. No other disclosures were reported.

Figures

Figure.
Figure.. Flow Diagram of Summary Questions Across Survey 1 and Survey 2
See this image and copyright information in PMC

References

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