International Delphi Study Identifies Top Research Priorities for Musculoskeletal Health in Joint Hypermobility

An international Delphi study published in Arthritis Care & Research, has identified the top 10 research priorities concerning the musculoskeletal health of individuals with generalized joint hypermobility (GJH). The study highlights the divergent priorities among patients, clinicians, and researchers, providing a focused research agenda to address the complex needs of this population.

Using a three-round online Delphi process, the study engaged 396 participants from 3 stakeholder groups: individuals with lived experience of joint hypermobility or their caregivers, health care professionals, and researchers with expertise in hypermobility. In the first round, participants submitted 958 proposed research questions, which were consolidated into 210 unique questions. These were narrowed to a prioritized list over 2 subsequent rounds, culminating in a ranked top 10.

The highest-ranked research question overall was: “How can we prevent disability, pain, and poor quality of life associated with the musculoskeletal comorbidities of symptomatic generalized joint hypermobility?” This question reflects a shared concern across stakeholder groups regarding long-term functional outcomes and the burden of chronic musculoskeletal symptoms.

The remaining questions addressing research priorities were:

• What is the most effective treatment for pain and fatigue associated with GJH and EDS?
• What are the clinical practice guidelines for GJH, HSD, and hEDS across the lifespan?
• What is the most effective way of supporting people with GJH to increase strength over the lifespan?
• What are the most common musculoskeletal comorbidities in people with GJH across the lifespan?
• What factors predict transition from asymptomatic to symptomatic GJH?
• Why do people with GJH commonly have neurological problems?
• What are the most limiting aspects of hypermobility in daily life activities as perceived by individuals with symptomatic GJH?
• Why do health professionals demonstrate a strong aversion toward individuals with chronic pain and/or fatigue in conjunction with GJH?
• What is the most effective way to cope with severe muscle spasms for people with GJH?

Participation remained strong throughout the study, with 257 participants (65%) completing round 2 and 249 (63%) completing round 3. The final round included 230 participants with lived experience, 73 health care professionals, and 21 researchers. Importantly, priority questions differed by group. “People with lived experience prioritized treatment questions,” the authors noted, emphasizing patient interest in actionable, therapeutic strategies. In contrast, “health care professionals and researchers prioritized service-impact and utilization research questions,” indicating a focus on systems-level approaches and implementation science.

The study results underscore the pressing need for evidence-based approaches to managing musculoskeletal complications of GJH, including pain, instability, and associated disability. The emphasis on prevention and quality of life outcomes also supports the integration of multidisciplinary care and patient-centered treatment models.

The researchers concluded that the study offers “a future focus for meaningful and necessary research in this field.”

Reference
Habibian S, Pacey V, Chan C, Hakim AJ, Williams CM. Priority musculoskeletal health research questions for people with generalized joint hypermobility: an international delphi study. Arthritis Care Res (Hoboken). 2025;77(6):792-800. doi:10.1002/acr.25501