Physiotherapists’ knowledge and management of adults with hypermobility and Joint Hypermobility Syndrome in the UK: a nationwide online survey

Lyell, M; Simmonds, Jane; Deane, JA

doi:10.1016/j.physio.2015.03.1761

Cited by 3 publications

(3 citation statements)

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“…Our results confirm to a large extent previous research undertaken in this field [Deane et al, ; Lyell et al, ]. In agreement, in the UK physiotherapists' knowledge of clinical features and assessment tools for JHS/EDS‐HT is poor, which may impact on patient management.…”

Section: Discussionsupporting

confidence: 87%

Knowledge, assessment, and management of adults with joint hypermobility syndrome/Ehlers–Danlos syndrome hypermobility type among flemish physiotherapists

Rombaut¹,

Deane²,

Simmonds³

et al. 2015

American J of Med Genetics Pt C

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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.

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Section: Discussionsupporting

confidence: 87%

Knowledge, assessment, and management of adults with joint hypermobility syndrome/Ehlers–Danlos syndrome hypermobility type among flemish physiotherapists

Rombaut¹,

Deane²,

Simmonds³

et al. 2015

American J of Med Genetics Pt C

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“…Education, reassurance, manual therapy, tape, hydrotherapy, and relaxation training are used by physical therapists [Lyell et al, ; Palmer et al, ; Rombaut et al, , ; Billings et al, 2015] and clinical experts recommend these strategies [Russek, ; Simmonds and Keer, ; Keer and Simmonds, ], based on clinical experience and some evidence of their efficacy from other patient groups. Currently there are no RCT's or comparative trials to support the efficacy of these strategies in individuals with JHS/hEDS.…”

Section: Principles Of Management Of Individuals With Jhs/eds‐ht In Cmentioning

confidence: 99%

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

Engelbert

Juul-Kristensen²,

Pacey

et al. 2017

American J of Med Genetics Pt C

135

114

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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.

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“…Physiotherapy is the mainstay of treatment for JHS (Palmer et al, ). However, few physiotherapists have received JHS‐specific training, and so they are unfamiliar with its presentation and lack confidence in its management (Lyell, Simmonds, & Deane, ; Palmer, Cramp, Lewis, Muhammad, & Clark, ; Rombaut et al, ). Physiotherapists also reported limited use of validated diagnostic and assessment tools (Palmer et al, ).…”

Section: Introductionmentioning

confidence: 99%

The views of people with joint hypermobility syndrome on its impact, management and the use of patient‐reported outcome measures. A thematic analysis of open‐ended questionnaire responses

Palmer

Bridgeman

Pierro

et al. 2019

Musculoskeletal Care

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Introduction Joint hypermobility syndrome (JHS) has been reported to have widespread impacts on people with the condition. However, our understanding of those impacts is still developing and we do not know if they can be captured effectively using patient‐reported outcome measures. The aim of the present study was to explore written qualitative comments from previously administered questionnaires, to identify the impacts of JHS and any issues related to using patient‐reported outcome measures to assess those impacts. Methods Previous research administered a draft condition‐specific questionnaire and Short Form‐36 questionnaire to adult members of a patient organization in the UK, incorporating an open text box for further comments. Those comments were transcribed, anonymized and analysed using thematic analysis. A coding list, themes and subthemes were developed through double coding, parallel independent analysis and consensus. Results A total of 393 of 614 eligible questionnaires (64%) contained qualitative comments and were analysed (mean respondent age 41 years, mean Bristol Impact of Hypermobility questionnaire score 228/360, 95% women). Three main themes were identified: (a) “Impacts of living with JHS”; (b) “Management strategies for JHS”; and (c) “Measurement and research into JHS”. Participants highlighted a range of impacts of JHS, incorporating physical, social and psychological domains. Respondents described difficult journeys to diagnosis, and feeling unsupported and misunderstood by their peers and healthcare professionals. They detailed helpful strategies for managing their condition and provided useful comments on using questionnaires to assess JHS. Conclusions The study yielded valuable findings that can be used to directly inform the assessment and management of JHS.

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Physiotherapists’ knowledge and management of adults with hypermobility and Joint Hypermobility Syndrome in the UK: a nationwide online survey

Cited by 3 publications

References 0 publications

Knowledge, assessment, and management of adults with joint hypermobility syndrome/Ehlers–Danlos syndrome hypermobility type among flemish physiotherapists

Knowledge, assessment, and management of adults with joint hypermobility syndrome/Ehlers–Danlos syndrome hypermobility type among flemish physiotherapists

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

The views of people with joint hypermobility syndrome on its impact, management and the use of patient‐reported outcome measures. A thematic analysis of open‐ended questionnaire responses

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