Priority musculoskeletal health research questions for people with generalized joint hypermobility: an international Delphi study

Objective: This study aimed to identify the top 10 international research priorities for musculoskeletal health of people with generalized joint hypermobility. Methods: A three-round Delphi method using an online survey was implemented. Three participant stakeholder groups were eligible for inclusion: (1) people with lived experience of joint hypermobility or their carers, (2) health care professionals, and (3) researchers with experience working with individuals with hypermobility. Participants provided up to three priority research questions in round 1. In round 2, participants prioritized 10 research questions from the unique questions proposed in round 1. In round 3, participants were presented with the top 10 questions from the overall cohort and for their stakeholder group(s) and asked to rank these in order of importance. Results: Round 1 commenced with 396 participants who provided 958 individual questions, which reduced to 210 unique questions following data cleaning. There were 257 participants (65% of 396) in round 2, and 249 participants (63% of 396, lived experience n = 230, health care professionals n = 73, and researchers n = 21) in round 3. The overall top-ranked question was, “How can we prevent disability, pain, and poor quality of life associated with the musculoskeletal comorbidities of symptomatic generalized joint hypermobility?” Specific stakeholder group priority research questions varied. People with lived experience prioritized treatment questions, whereas health care professionals and researchers prioritized service-impact and utilization research questions. Conclusion: Priority research questions relating to musculoskeletal health of people with generalized joint hypermobility have been internationally identified. These questions provide a future focus for meaningful and necessary research in this field.