Quality of life, unmet needs, and iatrogenic injuries in rehabilitation of patients with Ehlers–Danlos Syndrome hypermobility type/Joint Hypermobility Syndrome

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  • Claire Bovet
    University of Colorado Denver Adult Medical Genetics Program University of Colorado Denver Aurora Colorado
  • Matthew Carlson
    Physical Therapy Program University of Colorado Denver Aurora Colorado
  • Matthew Taylor
    University of Colorado Denver Adult Medical Genetics Program University of Colorado Denver Aurora Colorado

書誌事項

公開日
2016-06-08
権利情報
  • http://onlinelibrary.wiley.com/termsAndConditions#vor
DOI
  • 10.1002/ajmg.a.37774
公開者
Wiley

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説明

<jats:sec><jats:label/><jats:p>Ehlers–Danlos Syndrome, hypermobility type (EDS‐HT) and the joint hypermobility syndrome (JHS) are connective tissue disorders that form an overlapping clinical syndrome and are associated with frequent medical visits and substantial morbidity. EDS‐HT/JHS‐associated pain correlates with poor quality of life. While physical therapy is the recommended treatment for EDS‐HT/JHS, little is known about therapy‐related patient experiences and iatrogenic injuries. We studied 38 adult EDS‐HT/JHS patients, eliciting health‐related quality of life (HRQoL) from 28 patients through the RAND SF‐36 questionnaire. We also explored physical therapy experiences through focus groups with 13 patients. Our patients displayed poor HRQoL, with 71% reporting worse health over the past year. SF‐36 scores were significantly lower than the scores of the average American population (<jats:italic>P</jats:italic> < 0.001 for 8 of 10 categories assessed), but were comparable to EDS‐HT/JHS populations in Belgium, the Netherlands, Sweden, and Italy. Focus groups identified factors associated with: negative past physical therapy experiences, iatrogenic joint injuries, positive treatment experiences, and unmet rehabilitation needs. This group of EDS‐HT/JHS patients has significant decrements in HRQoL and many unmet treatment needs, as well as a risk for iatrogenic injuries. We identify several approaches to help meet patients' needs and improve joint rehabilitation in patients with EDS‐HT/JHS. © 2016 Wiley Periodicals, Inc.</jats:p></jats:sec>

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