The Evidence-Based Rationale for Physical Therapy Treatment of Children, Adolescents, and Adults Diagnosed With Joint Hypermobility Syndrome/Hypermobile Ehlers Danlos Syndrome

被引:107
作者
Engelbert, Raoul H. H. [4 ,5 ]
Juul-Kristensen, Birgit [6 ,7 ]
Pacey, Verity [8 ,9 ]
De Wandele, Inge [10 ]
Smeenk, Sandy [13 ]
Woinarosky, Nicoleta [12 ]
Sabo, Stephanie [11 ]
Scheper, Mark C. [14 ,15 ]
Russek, Leslie [16 ]
Simmonds, Jane V. [1 ,2 ,3 ]
机构
[1] Int Ehlers Danlos Syndrome Phys Therapy Clin Guid, London, England
[2] UCL, Inst Child Hlth, Great Ormond St, London, England
[3] Hosp St John & St Elizabeth, Hypermobil Unit, London, England
[4] Univ Amsterdam AMC, Amsterdam, Netherlands
[5] Univ Appl Sci Amsterdam, Fac Hlth, Ctr Res ACHIEVE, Res, Amsterdam, Netherlands
[6] Univ Southern Denmark, Res Unit Musculoskeletal Funct & Physiotherapy, Odense, Denmark
[7] Bergen Univ Coll, Inst Occupat Therapy Physiotherapy & Radiog, Bergen, Norway
[8] Macquarie Univ, Dept Hlth Profess, Westmead, NSW, Australia
[9] Childrens Hosp Westmead, Westmead, NSW, Australia
[10] Ghent Univ Hosp, Ctr Med Genet, Ghent, Belgium
[11] Cincinnati Childrens Hosp Med Ctr, Joint Hypermobil Evidence Based Practice Team, Cincinnati, OH 45229 USA
[12] Improving Life Children & Families Fdn ILC, Oakville, ON, Canada
[13] Improving Lives Children & Families Chron Pain Ch, Oakville, ON, Canada
[14] Univ Appl Sci Amsterdam, Physiotherapy, Amsterdam, Netherlands
[15] Acad Med Ctr Amsterdam, Dept Rehabil, Amsterdam, Netherlands
[16] Clarkson Univ, Musculoskeletal Phys Therapy & Res Courses, Potsdam, NY USA
关键词
physical therapy; diagnostics; treatment; guidelines; joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome; international classification of functioning; DEVELOPMENTAL COORDINATION DISORDER; RANDOMIZED CONTROLLED-TRIAL; GENERALIZED HYPERMOBILITY; MUSCLE STRENGTH; SYNDROME BJHS; EXERCISE; PHYSIOTHERAPY; MANAGEMENT; PAIN; MUSCULOSKELETAL;
D O I
10.1002/ajmg.c.31545
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
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. (C) 2017 Wiley Periodicals, Inc.
引用
收藏
页码:158 / 167
页数:10
相关论文
共 86 条
[1]   High prevalence of eosinophilic esophagitis in patients with inherited connective tissue disorders [J].
Abonia, J. Pablo ;
Wen, Ting ;
Stucke, Emily M. ;
Grotjan, Tommie ;
Griffith, Molly S. ;
Kemme, Katherine A. ;
Collins, Margaret H. ;
Putnam, Philip E. ;
Franciosi, James P. ;
von Tiehl, Karl F. ;
Tinkle, Brad T. ;
Marsolo, Keith A. ;
Martin, Lisa J. ;
Ware, Stephanie M. ;
Rothenberg, Marc E. .
JOURNAL OF ALLERGY AND CLINICAL IMMUNOLOGY, 2013, 132 (02) :378-386
[2]   Joint hypermobility syndrome in childhood. A not so benign multisystem disorder? [J].
Adib, N ;
Davies, K ;
Grahame, R ;
Woo, P ;
Murray, KJ .
RHEUMATOLOGY, 2005, 44 (06) :744-750
[3]  
[Anonymous], 2015, INT CLASS FUNCT DIS
[4]   A Tool for Clinical Reasoning and Reflection Using the International Classification of Functioning, Disability and Health (ICF) Framework and Patient Management Model [J].
Atkinson, Heather L. ;
Nixon-Cave, Kim .
PHYSICAL THERAPY, 2011, 91 (03) :416-430
[5]   GRADE guidelines: 3. Rating the quality of evidence [J].
Balshem, Howard ;
Helfand, Mark ;
Schuenemann, Holger J. ;
Oxman, Andrew D. ;
Kunz, Regina ;
Brozek, Jan ;
Vist, Gunn E. ;
Falck-Ytter, Yngve ;
Meerpohl, Joerg ;
Norris, Susan ;
Guyatt, Gordon H. .
JOURNAL OF CLINICAL EPIDEMIOLOGY, 2011, 64 (04) :401-406
[6]   Multidisciplinary Treatment of Disability in Ehlers-Danlos Syndrome Hypermobility Type/Hypermobility Syndrome: A Pilot Study Using a Combination of Physical and Cognitive-Behavioral Therapy on 12 Women [J].
Bathen, Trine ;
Hangmann, Anett Bjornodegard ;
Hoff, Marie ;
Andersen, Liv Oinaes ;
Rand-Hendriksen, Svend .
AMERICAN JOURNAL OF MEDICAL GENETICS PART A, 2013, 161 (12) :3005-3011
[7]   ARTICULAR MOBILITY IN AN AFRICAN POPULATION [J].
BEIGHTON, P ;
SOLOMON, L ;
SOSKOLNE, CL .
ANNALS OF THE RHEUMATIC DISEASES, 1973, 32 (05) :413-418
[8]  
Beighton P, 1998, AM J MED GENET, V77, P31, DOI 10.1002/(SICI)1096-8628(19980428)77:1<31::AID-AJMG8>3.0.CO
[9]  
2-O
[10]  
Billings SE., 2015, Physiother Pract Res, V36, P33