Immediate and 6-week after effects of a rehabilitation program for Ehlers-Danlos syndrome hypermobile type patients: A retrospective study

Am J Med Genet A. 2020 Oct;182(10):2263-2271. doi: 10.1002/ajmg.a.61772. Epub 2020 Aug 1.

Abstract

Ehlers-Danlos syndromes (EDS) are a group of inherited connective tissue disorders with an impaired quality of life in association with fatigue, pain, and kinesiophobia. A retrospective evaluation of the effects of an outpatient rehabilitation program (RP) was performed in Ehlers-Danlos syndrome hypermobile type (hEDS) patients. The 6-minute walk test (6MWT) was used to evaluate functional capacity. Kinesiophobia, fatigue, pain, and quality of life were self-evaluated at the start, at the end, and 6 weeks after the end of the RP. The retrospective analysis of patients' records showed significant improvement for the walked distance during the 6MWT (491.8 ± 72.5 vs. 439.4 ± 100.9 m) maintained at 6-week follow-up (p = .001), significant improvement for kinesiophobia (p = .033) and the impact of fatigue on activity (p = .01), and significant increase for quality of life with in particular improvements of vitality (p = .001). This retrospective study showed encouraging results of a RP for hEDS patients on functional capacity and quality of life, and prospective studies with long-term follow-up are needed to confirm them.

Keywords: 6-minute walk test; fatigue; functional capacity; kinesiophobia; quality of life.

MeSH terms

  • Aged
  • Ehlers-Danlos Syndrome / physiopathology
  • Ehlers-Danlos Syndrome / rehabilitation*
  • Ehlers-Danlos Syndrome / therapy
  • Fatigue / physiopathology
  • Fatigue / rehabilitation*
  • Fatigue / therapy
  • Female
  • Humans
  • Joint Instability / physiopathology
  • Joint Instability / rehabilitation*
  • Male
  • Middle Aged
  • Pain / physiopathology
  • Pain / rehabilitation*
  • Quality of Life
  • Walk Test

Supplementary concepts

  • Ehlers-Danlos syndrome type 3