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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.
Am J Med Genet C Semin Med Genet 2017; 175(1):158-167AJ

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. © 2017 Wiley Periodicals, Inc.

Authors

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Pub Type(s)

Journal Article

Language

eng

PubMed ID

28306230

Citation

Engelbert, Raoul H H., et al. "The Evidence-based Rationale for Physical Therapy Treatment of Children, Adolescents, and Adults Diagnosed With Joint Hypermobility Syndrome/hypermobile Ehlers Danlos Syndrome." American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, vol. 175, no. 1, 2017, pp. 158-167.
Engelbert RH, Juul-Kristensen B, Pacey V, et al. The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. Am J Med Genet C Semin Med Genet. 2017;175(1):158-167.
Engelbert, R. H., Juul-Kristensen, B., Pacey, V., de Wandele, I., Smeenk, S., Woinarosky, N., ... Simmonds, J. V. (2017). The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. American Journal of Medical Genetics. Part C, Seminars in Medical Genetics, 175(1), pp. 158-167. doi:10.1002/ajmg.c.31545.
Engelbert RH, et al. The Evidence-based Rationale for Physical Therapy Treatment of Children, Adolescents, and Adults Diagnosed With Joint Hypermobility Syndrome/hypermobile Ehlers Danlos Syndrome. Am J Med Genet C Semin Med Genet. 2017;175(1):158-167. PubMed PMID: 28306230.
* Article titles in AMA citation format should be in sentence-case
TY - JOUR T1 - The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome. AU - Engelbert,Raoul H H, AU - Juul-Kristensen,Birgit, AU - Pacey,Verity, AU - de Wandele,Inge, AU - Smeenk,Sandy, AU - Woinarosky,Nicoleta, AU - Sabo,Stephanie, AU - Scheper,Mark C, AU - Russek,Leslie, AU - Simmonds,Jane V, PY - 2017/3/18/entrez PY - 2017/3/18/pubmed PY - 2017/10/20/medline KW - diagnostics KW - guidelines KW - international classification of functioning KW - joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome KW - physical therapy KW - treatment SP - 158 EP - 167 JF - American journal of medical genetics. Part C, Seminars in medical genetics JO - Am J Med Genet C Semin Med Genet VL - 175 IS - 1 N2 - 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. © 2017 Wiley Periodicals, Inc. SN - 1552-4876 UR - https://www.unboundmedicine.com/medline/citation/28306230/The_evidence_based_rationale_for_physical_therapy_treatment_of_children_adolescents_and_adults_diagnosed_with_joint_hypermobility_syndrome/hypermobile_Ehlers_Danlos_syndrome_ L2 - https://doi.org/10.1002/ajmg.c.31545 DB - PRIME DP - Unbound Medicine ER -