Musculoskeletal complaints, physical activity and health-related quality of life among patients with the Ehlers-Danlos syndrome hypermobility type

Disabil Rehabil. 2010;32(16):1339-45. doi: 10.3109/09638280903514739.


Purpose: To investigate the musculoskeletal complaints, physical activity (PA) and health-related quality of life (HRQoL) in patients with the Ehlers-Danlos syndrome hypermobility type (EDS-HT).

Methods: Thirty-two female EDS-HT patients as defined by the Villefranche criteria and 32 gender- and age-matched healthy control subjects participated in the study. Data about musculoskeletal complaints were collected from a specific form developed for the study. Daily PA and HRQoL were evaluated by the Baecke questionnaire and the RAND 36-Item Health Survey (distributed by RAND), respectively.

Results: A significant presence of joint pain, joint dislocations, muscle cramps, tendinitis, fatigue and headache were revealed in the EDS-HT patient group. Joint pain was reported as the most frequent and most severe symptom. The habitual PA level was diminished in the patient group. Specifically, EDS-HT subjects had significantly lower sport participation, but a comparable leisure time excluding sports compared to the healthy control subjects. All eight HRQoL dimensions of the RAND-36 and both physical and emotional summary scores were significantly impaired in EDS-HT.

Conclusions: EDS-HT is characterised by various severe musculoskeletal complaints and has a detrimental effect on the habitual level of PA and HRQoL, in both physical and psychosocial dimension. An appropriate treatment and management in healthcare is needed.

MeSH terms

  • Adult
  • Aged
  • Arthralgia / physiopathology
  • Case-Control Studies
  • Ehlers-Danlos Syndrome / physiopathology*
  • Ehlers-Danlos Syndrome / psychology*
  • Fatigue / physiopathology
  • Female
  • Headache / physiopathology
  • Humans
  • Joint Dislocations / physiopathology
  • Leisure Activities
  • Middle Aged
  • Motor Activity / physiology*
  • Muscle Cramp / physiopathology
  • Quality of Life*
  • Severity of Illness Index
  • Sports
  • Sprains and Strains / physiopathology
  • Tendinopathy / physiopathology