Multiple Sustainable Benefits of a Rehabilitation Program in Therapeutic Management of Hypermobile Ehlers-Danlos Syndrome: A Prospective and Controlled Study at Short- and Medium-Term

Abstract

Objective: To evaluate the effects of a 9-week rehabilitation program (RP) for patients with hypermobile Ehlers-Danlos syndrome (hEDS) in the short- and medium-term.

Design: Nonrandomized controlled trial with 6 months follow-up.

Setting: Outpatient rehabilitation program.

Participants: A referred sample of 36 hEDS patients were assessed for eligibility (N=36), 25 were included, 22 completed the RP and 19 completed the follow-up.

Interventions: A 9 -week control period without intervention followed by a 9-week RP.

Main outcome measure: Functional exercise capacity was used as a primary outcome measure. Balance, kinesiophobia, fatigue, pain, quality of life, anxiety, depression, and hyperventilation were measured as secondary outcomes.

Results: No significant change was observed during the 9-week control period before the RP. There was a significant improvement immediately after the RP for the functional exercise capacity, balance with eyes closed, fatigue, and quality of life (P<.05). Even more improvements were found 6 weeks after the end of the RP, and there was still an improvement after 6 months in functional exercise capacity, kinesiophobia, depression, hyperventilation, and some components of the quality of life.

Conclusion: This study supports the effectiveness of an RP as a useful management tool for hEDS patients.

Trial registration: ClinicalTrials.gov NCT04680793.

Keywords: Exercise; Fatigue; Kinesiophobia; Physical activity; Quality of life; Rehabilitation.