Habibian Sara, Pacey Verity, Chan Cliffton, Hakim Alan J, Williams Cylie M
Macquarie University, Sydney, New South Wales, Australia.
Macquarie University, Sydney, New South Wales, and Monash University, Melbourne, Victoria, Australia.
Arthritis Care Res (Hoboken). 2025 Jun;77(6):792-800. doi: 10.1002/acr.25501. Epub 2025 Feb 17.
This study aimed to identify the top 10 international research priorities for musculoskeletal health of people with generalized joint hypermobility.
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.
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.
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.
本研究旨在确定关于全身关节活动过度人群肌肉骨骼健康的十大国际研究重点。
采用在线调查实施三轮德尔菲法。有三类参与利益相关者群体符合纳入条件:(1)有关节活动过度生活经历的人或其护理人员,(2)医疗保健专业人员,以及(3)有与关节活动过度个体合作经验的研究人员。参与者在第一轮中最多提供三个优先研究问题。在第二轮中,参与者从第一轮提出的独特问题中对10个研究问题进行优先排序。在第三轮中,向参与者展示来自整个队列以及其利益相关者群体的前10个问题,并要求他们按重要性顺序对这些问题进行排名。
第一轮有396名参与者,他们提供了958个单独问题,数据清理后减少到210个独特问题。第二轮有257名参与者(占396人的65%),第三轮有249名参与者(占396人的63%,有生活经历者n = 230,医疗保健专业人员n = 73,研究人员n = 21)。总体排名第一的问题是:“我们如何预防与有症状的全身关节活动过度的肌肉骨骼合并症相关的残疾、疼痛和生活质量低下?”特定利益相关者群体的优先研究问题各不相同。有生活经历的人将治疗问题列为优先事项,而医疗保健专业人员和研究人员则将服务影响和利用研究问题列为优先事项。
已在国际上确定了与全身关节活动过度人群肌肉骨骼健康相关的优先研究问题。这些问题为该领域有意义且必要的研究提供了未来的重点方向。