JMIR Res Protoc. 2026 Feb 4;15:e80394. doi: 10.2196/80394.
ABSTRACT
BACKGROUND: Although physical activity (PA) participation has known health benefits, many individuals with hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) have difficulties participating in PA. HSD/hEDS affect approximately 1 in 500 people and are more prevalent in females. HSD/hEDS may result in frequent joint injuries, chronic pain, and generalized fatigue. These symptoms, and a fear of new or reinjury, may result in barriers to PA participation. Overall, there is limited research on PA in this population. Previous exercise reviews have not included structured PA such as sports and occupational activities; unstructured PA such as play, household, or leisure activities; or younger ages, including children. Additionally, some females with HSD/hEDS report experiencing more frequent joint injuries and worsening pain and fatigue during times of hormonal transitions, such as puberty, pregnancy, as well as cyclically across the menstrual cycle. Some females also report improvements in symptoms and a reduction in injury frequency following menopause. The impacts of PA during these times of changing hormone levels for females living with HSD/hEDS are uncertain. A clear understanding of what types of structured and unstructured PA are safe and helpful for individuals of all ages with HSD/hEDS, and if PA should be adapted during times of female hormonal changes, is lacking.
OBJECTIVE: We propose a scoping review protocol to map and synthesize the evidence regarding considerations that may impact structured and unstructured PA participation in HSD/hEDS for individuals of all ages and during times of female hormonal transitions.
METHODS: A scoping review will be conducted using Covidence (Veritas Health Innovation Ltd) and Microsoft Excel (Microsoft Corp) to map the evidence regarding the impacts of PA on safety, physical health, and quality of life. These outcomes will be assessed using the World Health Organization International Classification of Functioning, Disability and Health framework.
RESULTS: The database search was performed on August 22, 2024, and updated on September 8, 2025. Data extraction started in September 2025 and is ongoing. The results are expected to be published by August 2026.
CONCLUSIONS: This proposed scoping review will aid in defining critical research directions regarding PA in HSD/hEDS, which may help inform guidelines outlining the risks and benefits of structured and unstructured PA. This review will also help define existing evidence for age-specific and hormone-related considerations regarding the impacts of PA in this population. This is particularly important as PA may help ameliorate the physical and mental symptoms associated with HSD/hEDS and may improve quality of life for these individuals across the lifespan.
PMID:41637690 | DOI:10.2196/80394