Knowledge, Assessment, and Management of Adults With Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome Hypermobility Type Among Flemish Physiotherapists

被引:21
作者
Rombaut, Lies [1 ]
Deane, Janet [2 ]
Simmonds, Jane [3 ]
De Wandele, Inge [4 ]
De Paepe, Anne [5 ,6 ]
Malfait, Fransiska [6 ]
Calders, Patrick [1 ]
机构
[1] Univ Ghent, Dept Rehabil Sci & Physiotherapy, B-9000 Ghent, Belgium
[2] Univ London Imperial Coll Sci Technol & Med, London SW7 2AZ, England
[3] HMSA, Honolulu, HI USA
[4] Univ Ghent, Ctr Med Genet, Nonmusculoskeletal Complicat Ehlers Danlos Syndro, B-9000 Ghent, Belgium
[5] Univ Ghent, Human & Med Genet, B-9000 Ghent, Belgium
[6] Univ Ghent, Ctr Med Genet, B-9000 Ghent, Belgium
关键词
assessment; Ehlers-Danlos syndrome hypermobility type; generalized joint hypermobility; joint hypermobility syndrome; management; physiotherapy; treatment; MOBILITY; PROPRIOCEPTION; INDIVIDUALS; SYMPTOMS; CRITERIA; FATIGUE; WOMEN; LIFE;
D O I
10.1002/ajmg.c.31434
中图分类号
Q3 [遗传学];
学科分类号
071007 ; 090102 ;
摘要
Physiotherapy plays a fundamental role in managing adults with the joint hypermobility syndrome/Ehlers-Danlos syndrome hypermobility type (JHS/EDS-HT). However, it is a challenge for both the patient and the physiotherapist as the condition is poorly understood and treatment for JHS/EDS-HT is currently undefined. Insight into current practice is, therefore, necessary in order to establish baseline knowledge in this area and in the long term to improve the standard of patient care. Therefore, the purpose of this study was to evaluate current physiotherapists' knowledge of JHS/EDS-HT and to gain insight into current physiotherapy practice with emphasis on assessment, management, and treatment efficacy. Three hundred twenty-five Flemish physiotherapists participated in the study by filling out electronically a modified version of the Hypermobility and Hypermobility Syndrome Questionnaire (HHQ), which covered theoretical constructs such as general knowledge, assessment, management, and learning in relation to generalized joint hypermobility and JHS/EDS-HT. The results show that physiotherapists report a low level of confidence with regard to assessment and management of JHS/EDS-HT. Knowledge of hypermobility and JHS/EDS-HT is weak, especially regarding the features associated with JHS/EDS-HT. Many treatment approaches are used by physiotherapists with the majority showing preference for education, reassurance, muscle strengthening, proprioceptive and core stability training. Almost all approaches were perceived as being clinically effective by the physiotherapists, highlighting a lack of consensus. In conclusion, this study in Flemish physiotherapists confirms that JHS/EDS-HT is under-recognized, not well known and deemed difficult to treat. Further education is required and sought by the physiotherapists surveyed, and future research is needed. (c) 2015 Wiley Periodicals, Inc.
引用
收藏
页码:76 / 83
页数:8
相关论文
共 39 条
  • [1] 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
    Bathen, Trine
    Hangmann, Anett Bjornodegard
    Hoff, Marie
    Andersen, Liv Oinaes
    Rand-Hendriksen, Svend
    [J]. AMERICAN JOURNAL OF MEDICAL GENETICS PART A, 2013, 161 (12) : 3005 - 3011
  • [2] ARTICULAR MOBILITY IN AN AFRICAN POPULATION
    BEIGHTON, P
    SOLOMON, L
    SOSKOLNE, CL
    [J]. ANNALS OF THE RHEUMATIC DISEASES, 1973, 32 (05) : 413 - 418
  • [3] Symptoms and functional health status of individuals with Ehlers-Sanlos syndrome (EDS)
    Berglund, B
    Nordström, G
    [J]. JCR-JOURNAL OF CLINICAL RHEUMATOLOGY, 2001, 7 (05) : 308 - 314
  • [4] Living a restricted life with Ehlers-Danlos Syndrome (EDS)
    Berglund, B
    Nordström, G
    Lützén, K
    [J]. INTERNATIONAL JOURNAL OF NURSING STUDIES, 2000, 37 (02) : 111 - 118
  • [5] Dignity not fully upheld when seeking health care: Experiences expressed by individuals suffering from Ehlers-Danlos syndrome
    Berglund, Britta
    Anne-Cathrine, Mattiasson
    Randers, Ingrid
    [J]. DISABILITY AND REHABILITATION, 2010, 32 (01) : 1 - 7
  • [6] Castori M, 2011, CLIN EXP RHEUMATOL, V29, P998
  • [7] Nosology and Inheritance Pattern(s) of Joint Hypermobility Syndrome and Ehlers-Danlos Syndrome, Hypermobility Type: A Study of Intrafamilial and Interfamilial Variability in 23 Italian Pedigrees
    Castori, Marco
    Dordoni, Chiara
    Valiante, Michele
    Sperduti, Isabella
    Ritelli, Marco
    Morlino, Silvia
    Chiarelli, Nicola
    Celletti, Claudia
    Venturini, Marina
    Camerota, Filippo
    Calzavara-Pinton, Piergiacomo
    Grammatico, Paola
    Colombi, Marina
    [J]. AMERICAN JOURNAL OF MEDICAL GENETICS PART A, 2014, 164 (12) : 3010 - 3020
  • [8] Gynecologic and Obstetric Implications of the Joint Hypermobility Syndrome (a.k.a. Ehlers-Danlos Syndrome Hypermobility Type) in 82 Italian Patients
    Castori, Marco
    Morlino, Silvia
    Dordoni, Chiara
    Celletti, Claudia
    Camerota, Filippo
    Ritelli, Marco
    Morrone, Aldo
    Venturini, Marina
    Grammatico, Paola
    Colombi, Marina
    [J]. AMERICAN JOURNAL OF MEDICAL GENETICS PART A, 2012, 158A (09) : 2176 - 2182
  • [9] Management of pain and fatigue in the joint hypermobility syndrome (a.k.a. Ehlers-Danlos syndrome, hypermobility type): Principles and proposal for a multidisciplinary approach
    Castori, Marco
    Morlino, Silvia
    Celletti, Claudia
    Celli, Mauro
    Morrone, Aldo
    Colombi, Marina
    Camerota, Filippo
    Grammatico, Paola
    [J]. AMERICAN JOURNAL OF MEDICAL GENETICS PART A, 2012, 158A (08) : 2055 - 2070
  • [10] The Ehlers-Danlos syndrome, a disorder with many faces
    De Paepe, A.
    Malfait, F.
    [J]. CLINICAL GENETICS, 2012, 82 (01) : 1 - 11