Exercise beliefs and behaviours of individuals with Joint Hypermobility syndrome/Ehlers–Danlos syndrome – hypermobility type

Abstract

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.

Keywords:

• Joint Hypermobility syndrome
• Ehlers–Danlos syndrome – hypermobility type
• exercise beliefs
• exercise behaviour
• physiotherapy
• physiotherapy

Acknowledgements

Thank you to Dr Joseph McVeigh, Rosemary Keer, Professor Howard Bird, Professor Rodney Grahame, Isobel Knight, Donna Wicks, Lara Bloom and expert patients who helped with the design of the questionnaire. Thank you to all the individuals who completed the questionnaire.

Disclosure statement

The authors report no declaration of interest.

Additional information

Funding

Thanks to the Musculoskeletal Association of Chartered Physiotherapists (MACP), the Hypermobility Syndromes Association (HMSA) and Ehlers–Danlos Support UK (EDS Support UK) for funding and supporting the research.