Exercise beliefs and behaviours of individuals with Joint Hypermobility syndrome/Ehlers–Danlos syndrome – hypermobility type
Open accessAbstract
PURPOSE: To explore exercise beliefs and behaviours of individuals with Joint Hypermobility syndrome/Ehlers-Danlos syndrome - hypermobility type and to explore patient experiences of physiotherapy. METHODS: A cross sectional questionnaire survey design was used to collect quantitative and qualitative data from adult members of the Hypermobility Syndromes Association and Ehlers-Danlos Syndrome Support UK. Descriptive and inferential statistics were used to analyse the data. Qualitative data was analysed thematically. RESULTS: 946 questionnaires were returned and analysed. Participants who received exercise advice from a physiotherapist were 1.75 more likely to report high volumes of weekly exercise (odds ratio [OR] = 1.75, 95% confidence interval [CI] = 1.30-2.36, p < 0.001) than those with no advice. Participants who believed that exercise is important for long-term management were 2.76 times more likely to report a high volume of weekly exercise compared to the participants who did not hold this belief (OR = 2.76, 95% CI = 1.38-5.50, p = 0.004). Three themes emerged regarding experience of physiotherapy; physiotherapist as a partner, communication - knowledge, experience and safety. CONCLUSION: Pain, fatigue and fear are common barriers to exercise. Advice from a physiotherapist and beliefs about the benefits of exercise influenced the reported exercise behaviours of individuals with Ehlers-Danlos syndrome - hypermobility type in this survey. Implications for rehabilitation Exercise is a cornerstone of treatment for Ehlers-Danlos syndrome/Ehlers-Danlos syndrome - hypermobility type. Pain, fatigue and fear of injury are frequently reported barriers to exercise. Advice from physiotherapists may significantly influence exercise behaviour. Physiotherapists with condition specific knowledge and good verbal and non-verbal communication facilitate a positive therapeutic experience.
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Strong evidence for physical therapy is lacking, yet it is the mainstay of management.
“Strong evidence for physical therapy is lacking [39], yet it is the mainstay of management [8, 40, 41].”
From Are patients with hypermobile Ehlers–Danlos syndrome or hypermobility spectrum disorder so different? (2021) · cites this paper as [39]
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Jain, N. S., Taylor, J. M., Chevalier, J. M., Liu, T. P., & Azari, K. K. (2025) · Hand · doi:10.1177/15589447251340081 · Cited by 1 · see citing works
“13-16 Although surgical outcomes have been shown to be similar between hyperlax and normal cohorts, 17 there is evidence that hyperlax patients are particularly averse to guided therapeutic exercise regimens due to pain and fear of injury, 18,19 which may complicate postoperative rehabilitation.”
Kaabi, N. A., Camacho, E., Orchanian‐Cheff, A., Silano, V., McGillis, L., Truong, W. T., Reid, W. D., Chow, C., Ryan, C. M., Slepian, P. M., et al. (2025) · Journal of Clinical Medicine · doi:10.3390/jcm14124126 · Cited by 2 · see citing works
“Moreover, pain, fatigue, kinesiophobia, and other musculoskeletal limitations are well documented barriers to physical activity and exercise in individuals with EDS/G-HSD [39,51].”
Dhawan, J., Sohrabipour, S., Al-Timimi, A., Elangeswaran, B., Choudhary, O. A., Kaabi, N. A., Masthan, M. I., Mina, D. S., McGillis, L., Truong, W. T., et al. (2025) · PLoS ONE · doi:10.1371/journal.pone.0325709 · Cited by 1 · see citing works
“This work is timely and relevant given the evolving evidence that exercise interventions may help improve daily function and quality of life in this population [4,22,25].”
Walking and running in people who are hypermobile: A scoping review
Hook, J., Kendall, A., & Chappell, A. (2025) · Gait & Posture · doi:10.1016/j.gaitpost.2025.06.013 · Cited by 1 · see citing works
Chappell, A., Dissanayake, D., Ho, C., Jepson, B., & Kilgour, G. M. (2026) · Physical & Occupational Therapy In Pediatrics · doi:10.1080/01942638.2026.2709457 · Cited by 1 · see citing works
Rheumatology and Postural Tachycardia Syndrome
Hakim, A. J., Simmonds, J. V., & Kaul, A. (2020) · Springer eBooks · doi:10.1007/978-3-030-54165-1_12 · Cited by 1 · see citing works
Self-citationSnowdon, N., & Dadla, S. A. (2023) · International Journal of Therapy and Rehabilitation · doi:10.12968/ijtr.2022.0148 · Cited by 1 · see citing works
Ward, S. L., MacDermott, E. J., Deane, J. A., Simmonds, J. V., Mockler, D., & Dockrell, S. (2022) · Physiotherapy Practice and Research · doi:10.3233/ppr-210601 · Cited by 1 · see citing works
“Children and young people with symptomatic hypermobility are often initially referred to tertiary paediatric rheumatology services, however, patients may also present to many other medical domains [29, 30].”
Self-citationHigo, A., Pearce, G., Palmer, S., & Grant, L. (2023) · Clinical Case Reports · doi:10.1002/ccr3.6821
Inter-professional Care: Integration with Exercise Physiologists
McLaughlin, M. A., & Vera, F. (2020) · Springer eBooks · doi:10.1007/978-3-030-48088-2_17
Dorich, J. M., & Little, K. J. (2019) · Elsevier eBooks · doi:10.1016/b978-0-323-53091-0.00016-6
Paiba, N., & Harris, M. D. (2023) · European Journal of Integrative Medicine · doi:10.1016/j.eujim.2023.102231
Ladell, A. J. M., Golden, D. W., Oliemans, J. P., Walls, K. D., Manocha, R. H. K., & Fletcher, J. R. (2025) · Frontiers in Rehabilitation Sciences · doi:10.3389/fresc.2025.1706912
Golden, D. W., Low, J. L., Daun, J. T., Jones, C. A., Dennett, L., Culos-Reed, S. N., & Manocha, R. H. K. (2026) · JMIR Research Protocols · doi:10.2196/80394 · Cited by 2 · see citing works
“Inac-tivity may further exacerbate HSD/hEDS symptoms [6,7], prompting a vicious cycle of symptoms reinforcing sedentary behavior and vice versa.”
Russek, L. N., Bon, J. D., Herbland, A., Higgins, C. V. Z., Jandrew, T., Adams, A., & Simmonds, J. V. (2026) · Journal of Multidisciplinary Healthcare · doi:10.2147/jmdh.s564972
“4 8 Therapeutic exercise is considered one of the most effective treatment options in the improvement of pain and disability in symptomatic hypermobility.”
Self-citationDiagnostische Verfahren zur Bestimmung der Faszienelastizität
(2026) · Elsevier eBooks · doi:10.1016/b978-3-437-55038-6.00006-3
Huang, I. (2026) · Elsevier eBooks · doi:10.1016/b978-0-443-23516-0.00127-6
- Authors
- Simmonds, J. V., Herbland, A., Hakim, A., Ninis, N., Lever, W., Aziz, Q., & Cairns, M.
- Affiliations
- Hospital of St John & St Elizabeth (GB)
- University of Hertfordshire (GB)
- Imperial College Healthcare NHS Trust (GB)
- University of Cambridge (GB)
- School of Health and Social Work, University of Hertfordshire, Hatfield, UK;
- Corresponding author
- Simmonds, Jane V.
- Venue
- Disability and Rehabilitation
- Publisher
- Informa UK Limited
- Published
- 2017-11-10
- Volume
- 41
- Issue
- 4
- Pages
- 445-455
- ISSN
- 0963-8288 (ISSN-L)
- 1464-5165
- OpenAlex
- W2767425097
- Cited by
- 60
- References
- 50
- Citations by year
- 2026: 5 · 2025: 9 · 2024: 9 · 2023: 7 · 2022: 8 · 2021: 10 · 2020: 7 · 2019: 5
- FWCI
- 2.18
- Type
- journal article
- Language
- en
- Open access
- green
- uhra.herts.ac.uk
- Locations
- Disability and Rehabilitation (publishedVersion)
- PubMed (publishedVersion)
- UCL Discovery (University College London) (acceptedVersion)
- University of Hertfordshire Research Archive (University of Hertfordshire) (submittedVersion)
- Figshare (submittedVersion, cc-by)
- Figshare (cc-by)
- Funders
- Musculoskeletal Association of Chartered Physiotherapists
- Hypermobility Syndromes Association
- Ehlers–Danlos Support UK
- Topics
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Connective tissue disorders research
- Health Sciences › Medicine › Pharmacology › Musculoskeletal pain and rehabilitation
- Health Sciences › Medicine › Physiology › Physical Activity and Health
- Keywords
- Ehlers-Danlos syndrome hypermobility type, joint hypermobility syndrome, exercise beliefs, exercise behavior, physiotherapy, barriers to exercise, pain, fatigue, fear of injury, patient-therapist communication
- MeSH terms
- Adult, Attitude to Health, Cross-Sectional Studies, Culture, Ehlers-Danlos Syndrome, Female, Humans, Male, Middle Aged, Surveys and Questionnaires, Exercise, Physical Therapy Modalities, Patient Preference
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