Quality of life, unmet needs, and iatrogenic injuries in rehabilitation of patients with Ehlers-Danlos Syndrome hypermobility type/Joint Hypermobility Syndrome.
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 (P < 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.
University of Colorado Denver, Adult Medical Genetics Program, University of Colorado Denver, Aurora, Colorado.
Claire
C
Bovet
Physical Therapy Program, University of Colorado Denver, Aurora, Colorado.
Matthew
M
Carlson
University of Colorado Denver, Adult Medical Genetics Program, University of Colorado Denver, Aurora, Colorado.
Matthew
M
Taylor
D000328:Adult; D004535:Ehlers-Danlos Syndrome / Q000453:epidemiology* / Q000534:rehabilitation* / Q000628:therapy; D005260:Female; D017144:Focus Groups; D006301:Health Services Needs and Demand; D006801:Humans; D007049:Iatrogenic Disease; D008297:Male; D008875:Middle Aged; D026741:Physical Therapy Modalities; D011787:Quality of Health Care; D011788:Quality of Life; D012307:Risk Factors; D011795:Surveys and Questionnaires; D055815:Young Adult
Ehlers-Danlos syndrome; focus groups; iatrogenic injuries; joint hypermobility; physical therapy; quality of life; rehabilitation