The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome

Raoul H. H. Engelbert, Birgit Juul-Kristensen, Verity Pacey, Inge de Wandele, Sandy Smeenk, Nicoleta Woinarosky, Stephanie Sabo, Mark C. Scheper, Leslie Russek, Jane V. Simmonds

Research output: Contribution to journalArticleResearchpeer-review

Abstract

New insights into the phenotype of Joint Hypermobility Syndrome (JHS) and Ehlers-Danlos Syndrome-hypermobile type (hEDS) have raised many issues in relation to classification, diagnosis, assessment, and treatment. Within the multidisciplinary team, physical therapy plays a central role in management of individuals with hypermobility related disorders. However, many physical therapists are not familiar with the diagnostic criteria, prevalence, common clinical presentation, and management. This guideline aims to provide practitioners with the state of the art regarding the assessment and management of children, adolescents, and adults with JHS/hEDS. Due to the complexity of the symptoms in the profile of JHS/hEDS, the International Classification of Functioning, Disability and Health (ICF) is adopted as a central framework whereby the umbrella term of disability is used to encompass functions, activities and participation, as well as environmental and personal factors. The current evidence-based literature regarding the management of JHS/hEDS is limited in size and quality and there is insufficient research exploring the clinical outcomes of a number of interventions. Multicenter randomized controlled trials are warranted to assess the clinical and cost-effectiveness of interventions for children and adults. Until further multicenter trials are conducted, clinical decision-making should be based on theoretical and the current limited research evidence. For all individuals diagnosed with JHS/hEDS, international consensus and combined efforts to identify risk profiles would create a better understanding of the pathological mechanisms and the potential for optimizing health care for affected individuals.

LanguageEnglish
Pages158-167
Number of pages10
JournalAmerican Journal of Medical Genetics, Part C: Seminars in Medical Genetics
Volume175C
Issue number1
DOIs
Publication statusPublished - Mar 2017

Fingerprint

Ehlers-Danlos Syndrome
Joint Instability
International Classification of Functioning, Disability and Health
Play Therapy
Therapeutics
Physical Therapists
Research
Multicenter Studies
Cost-Benefit Analysis
Consensus
Randomized Controlled Trials
Guidelines
Delivery of Health Care
Phenotype

Keywords

  • physical therapy
  • diagnostics
  • treatment
  • guidelines
  • joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome
  • international classification of functioning

Cite this

Engelbert, Raoul H. H. ; Juul-Kristensen, Birgit ; Pacey, Verity ; de Wandele, Inge ; Smeenk, Sandy ; Woinarosky, Nicoleta ; Sabo, Stephanie ; Scheper, Mark C. ; Russek, Leslie ; Simmonds, Jane V. / The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. In: American Journal of Medical Genetics, Part C: Seminars in Medical Genetics. 2017 ; Vol. 175C, No. 1. pp. 158-167.
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The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. / Engelbert, Raoul H. H.; Juul-Kristensen, Birgit; Pacey, Verity; de Wandele, Inge; Smeenk, Sandy; Woinarosky, Nicoleta; Sabo, Stephanie; Scheper, Mark C.; Russek, Leslie; Simmonds, Jane V.

In: American Journal of Medical Genetics, Part C: Seminars in Medical Genetics, Vol. 175C, No. 1, 03.2017, p. 158-167.

Research output: Contribution to journalArticleResearchpeer-review

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