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Quality of life, unmet needs, and iatrogenic injuries in rehabilitation of patients with Ehlers-Danlos Syndrome hypermobility type/Joint Hypermobility Syndrome.
Am J Med Genet A 2016; 170(8):2044-51AJ

Abstract

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.

Authors+Show Affiliations

University of Colorado Denver, Adult Medical Genetics Program, University of Colorado Denver, Aurora, Colorado.Physical Therapy Program, University of Colorado Denver, Aurora, Colorado.University of Colorado Denver, Adult Medical Genetics Program, University of Colorado Denver, Aurora, Colorado.

Pub Type(s)

Journal Article

Language

eng

PubMed ID

27273746

Citation

Bovet, Claire, et al. "Quality of Life, Unmet Needs, and Iatrogenic Injuries in Rehabilitation of Patients With Ehlers-Danlos Syndrome Hypermobility type/Joint Hypermobility Syndrome." American Journal of Medical Genetics. Part A, vol. 170, no. 8, 2016, pp. 2044-51.
Bovet C, Carlson M, Taylor M. Quality of life, unmet needs, and iatrogenic injuries in rehabilitation of patients with Ehlers-Danlos Syndrome hypermobility type/Joint Hypermobility Syndrome. Am J Med Genet A. 2016;170(8):2044-51.
Bovet, C., Carlson, M., & Taylor, M. (2016). Quality of life, unmet needs, and iatrogenic injuries in rehabilitation of patients with Ehlers-Danlos Syndrome hypermobility type/Joint Hypermobility Syndrome. American Journal of Medical Genetics. Part A, 170(8), pp. 2044-51. doi:10.1002/ajmg.a.37774.
Bovet C, Carlson M, Taylor M. Quality of Life, Unmet Needs, and Iatrogenic Injuries in Rehabilitation of Patients With Ehlers-Danlos Syndrome Hypermobility type/Joint Hypermobility Syndrome. Am J Med Genet A. 2016;170(8):2044-51. PubMed PMID: 27273746.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - Quality of life, unmet needs, and iatrogenic injuries in rehabilitation of patients with Ehlers-Danlos Syndrome hypermobility type/Joint Hypermobility Syndrome. AU - Bovet,Claire, AU - Carlson,Matthew, AU - Taylor,Matthew, Y1 - 2016/06/08/ PY - 2016/02/18/received PY - 2016/05/11/accepted PY - 2016/6/9/entrez PY - 2016/6/9/pubmed PY - 2017/10/25/medline KW - Ehlers-Danlos syndrome KW - focus groups KW - iatrogenic injuries KW - joint hypermobility KW - physical therapy KW - quality of life KW - rehabilitation SP - 2044 EP - 51 JF - American journal of medical genetics. Part A JO - Am. J. Med. Genet. A VL - 170 IS - 8 N2 - 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. SN - 1552-4833 UR - https://www.unboundmedicine.com/medline/citation/27273746/Quality_of_life_unmet_needs_and_iatrogenic_injuries_in_rehabilitation_of_patients_with_Ehlers_Danlos_Syndrome_hypermobility_type/Joint_Hypermobility_Syndrome_ L2 - https://doi.org/10.1002/ajmg.a.37774 DB - PRIME DP - Unbound Medicine ER -