Accepted for/Published in: JMIR Research Protocols
Date Submitted: Jul 9, 2025
Date Accepted: Dec 12, 2025
Safety and Impacts of Physical Activity for Individuals Living with Hypermobility Spectrum Disorders and Hypermobile Ehlers-Danlos Syndrome: A Scoping Review Protocol
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 are connective tissue disorders affecting 1 in 600 to 1 in 900 people, with a female preponderance. HSD/hEDS may result in frequent joint injuries, chronic pain, and generalized fatigue. These symptoms, and a fear of new or re-injury, may result in barriers to PA participation. 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 during menstruation. Some females also report improvements in symptoms and injury frequency following menopause. The impacts of physical activity during these times of changing hormone levels for females living with HSD/hEDS are unclear. Additionally, 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. 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:
The evidence regarding impacts of PA on safety, physical health, and quality of life will be assessed using the World Health Organization International Classification of Functioning, Disability and Health framework.
Results:
As of July 2025, 3,362 articles have been identified. 1922 duplicates were removed, 1440 titles and abstracts were screened, 139 full manuscripts were reviewed, and 51 articles have been included for data extraction. Data extraction is anticipated to be completed by September 2025.
Conclusions:
This proposed scoping review will aid in defining critical research directions regarding PA in HSD/hEDS and will 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 of HSD/hEDS and may improve quality of life for these individuals across the lifespan. Clinical Trial: OSF Registries: osf.io/r6wf8; https://doi.org/10.17605/OSF.IO/GE5AK
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