The effectiveness of therapeutic exercise for joint hypermobility syndrome: a systematic review

Palmer, Shea; Bailey, Samuel; Barker, Louise S.; Barney, Lauren; Elliott, Ami

doi:10.1016/j.physio.2013.09.002

Cited by 66 publications

(75 citation statements)

References 23 publications

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“…Two recent systematic reviews included only a handful of eligible trials of physiotherapy and occupational therapy interventions for JHS, and found limited evidence for their clinical effectiveness and cost-effectiveness. 33,34 Although there is some evidence that people with JHS who receive exercise interventions improve over time, there is little convincing evidence for the effectiveness of different forms of exercise or for exercise being more effective than a control condition. 33 The current lack of evidence on the most effective management options for JHS may contribute to anecdotally reported negative experiences of management.…”

Section: Fundingmentioning

confidence: 99%

“…33,34 Although there is some evidence that people with JHS who receive exercise interventions improve over time, there is little convincing evidence for the effectiveness of different forms of exercise or for exercise being more effective than a control condition. 33 The current lack of evidence on the most effective management options for JHS may contribute to anecdotally reported negative experiences of management. 7,35 Higher-quality multicentre trials are clearly required to investigate the clinical effectiveness and cost-effectiveness of physiotherapy for JHS.…”

Section: Fundingmentioning

confidence: 99%

“…The research evidence is at a very early stage of development, with a recent systematic literature review conducted by this research team 33 identifying only three exercise studies in adults that met the inclusion criteria. 26,35,36 One further study was conducted in children.…”

Section: Evidence For the Effectiveness Of Physiotherapymentioning

confidence: 99%

“…The only other randomised trial of exercise in joint hypermobility included in the review by Palmer et al 33 was conducted in children. 37 This study did not include a 'no or minimal intervention' arm but instead compared the effects of targeted (n = 30) with a more generalised exercise approach (n = 27).…”

Section: Evidence For the Effectiveness Of Physiotherapymentioning

confidence: 99%

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The feasibility of a randomised controlled trial of physiotherapy for adults with joint hypermobility syndrome

Palmer

Cramp

Clark

et al. 2016

Health Technol Assess

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BackgroundJoint hypermobility syndrome (JHS) is a heritable disorder associated with laxity and pain in multiple joints. Physiotherapy is the mainstay of treatment, but there is little research investigating its clinical effectiveness.ObjectivesTo develop a comprehensive physiotherapy intervention for adults with JHS; to pilot the intervention; and to conduct a pilot randomised controlled trial (RCT) to determine the feasibility of conducting a future definitive RCT.DesignPatients’ and health professionals’ perspectives on physiotherapy for JHS were explored in focus groups (stage 1). A working group of patient research partners, clinicians and researchers used this information to develop the physiotherapy intervention. This was piloted and refined on the basis of patients’ and physiotherapists’ feedback (stage 2). A parallel two-arm pilot RCT compared ‘advice’ with ‘advice and physiotherapy’ (stage 3). Random allocation was via an automated randomisation service, devised specifically for the study. Owing to the nature of the interventions, it was not possible to blind clinicians or patients to treatment allocation.SettingStage 1 – focus groups were conducted in four UK locations. Stages 2 and 3 – piloting of the intervention and the pilot RCT were conducted in two UK secondary care NHS trusts.ParticipantsStage 1 – patient focus group participants (n = 25, three men) were aged > 18 years, had a JHS diagnosis and had received physiotherapy within the preceding 12 months. The health professional focus group participants (n = 16, three men; 14 physiotherapists, two podiatrists) had experience of managing JHS. Stage 2 – patient participants (n = 8) were aged > 18 years, had a JHS diagnosis and no other musculoskeletal conditions causing pain. Stage 3 – patient participants for the pilot RCT (n = 29) were as for stage 2 but the lower age limit was 16 years.InterventionFor the pilot RCT (stage 3) the advice intervention was a one-off session, supplemented by advice booklets. All participants could ask questions specific to their circumstances and receive tailored advice. Participants were randomly allocated to ‘advice’ (no further advice or physiotherapy) or ‘advice and physiotherapy’ (an additional six 30-minute sessions over 4 months). The physiotherapy intervention was supported by a patient handbook and was delivered on a one-to-one patient–therapist basis. It aimed to increase patients’ physical activity through developing knowledge, understanding and skills to better manage their condition.Main outcome measuresData from patient and health professional focus groups formed the main outcome from stage 1. Patient and physiotherapist interview data also formed a major component of stages 2 and 3. The primary outcome in stage 3 related to the feasibility of a future definitive RCT [number of referrals, recruitment and retention rates, and an estimate of the value of information (VOI) of a future RCT]. Secondary outcomes included clinical measures (physical function, pain, global status, self-reported joint count, quality of life, exercise self-efficacy and adverse events) and resource use (to estimate cost-effectiveness). Outcomes were recorded at baseline, 4 months and 7 months.ResultsStage 1 – JHS is complex and unpredictable. Physiotherapists should take a long-term holistic approach rather than treating acutely painful joints in isolation. Stage 2 – a user-informed physiotherapy intervention was developed and evaluated positively. Stage 3 – recruitment to the pilot RCT was challenging, primarily because of a perceived lack of equipoise between advice and physiotherapy. The qualitative evaluation provided very clear guidance to inform a future RCT, including enhancement of the advice intervention. Some patients reported that the advice intervention was useful and the physiotherapy intervention was again evaluated very positively. The rate of return of questionnaires was low in the advice group but reasonable in the physiotherapy group. The physiotherapy intervention showed evidence of promise in terms of primary and secondary clinical outcomes. The advice arm experienced more adverse events. The VOI analysis indicated the potential for high value from a future RCT. Such a trial should form the basis of future research efforts.ConclusionA future definitive RCT of physiotherapy for JHS seems feasible, although the advice intervention should be made more robust to address perceived equipoise and subsequent attrition.Trial registrationCurrent Controlled Trials ISRCTN29874209.FundingThis project was funded by the National Institute for Health Research (NIHR) Health Technology Assessment programme and will be published in full inHealth Technology Assessment; Vol. 20, No. 47. See the NIHR Journals Library website for further project information.

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Section: Fundingmentioning

confidence: 99%

Section: Fundingmentioning

confidence: 99%

Section: Evidence For the Effectiveness Of Physiotherapymentioning

confidence: 99%

Section: Evidence For the Effectiveness Of Physiotherapymentioning

confidence: 99%

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The feasibility of a randomised controlled trial of physiotherapy for adults with joint hypermobility syndrome

Palmer

Cramp

Clark

et al. 2016

Health Technol Assess

Self Cite

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“…Those with the condition report generalized joint hypermobility and symptoms like musculoskeletal complaints, recurrent joint dislocations/joint instability and chronic pain, sometimes starting in childhood (Adib, Davies, Grahame, Woo, & Murray, 2005; Clinch & Ecclestone, 2009; Malfait et al, 2017). Physiotherapy is considered to be the main mode of treatment (Simmonds & Keer, 2007), although there is little evidence relating to the success of these interventions (Palmer, Bailey, Barker, Barney, & Elliott, 2014); the reason for this is likely to be the complex individual nature of the condition. Those with JHS/EDS-HT feel they would benefit from consulting with HPs who employ a holistic approach and are open and non-judgmental about a person’s story (Knight, 2015; Palmer et al, 2016).…”

Section: Introductionmentioning

confidence: 99%

A humanisation approach for the management of Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type (JHS/EDS-HT)

Clark

Knight

2017

International Journal of Qualitative Studies on Health and Well

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Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome—Hypermobility Type (JHS/EDS-HT) is a complex and multisystemic condition which significantly impacts on a person’s health and well-being and is challenging for health professionals (HPs) to manage. People with JHS/EDS-HT and HPs recognise the individual nature and the complexities of the condition. There is a requirement to understand the condition within the context of the individual human dimensions of illness and healing. The aim of this paper is to explore the management of this condition using a theoretical model referred to as the Humanisation Framework. It is suggested that using the philosophical dimensions of this framework will empower HPs and those with JHS/EDS-HT to work together to proactively manage this condition. The eight dimensions of the Humanisation Framework facilitate an experiential understanding of the person within their context and environment, providing a constructive adjunct to the evidence-based management of those with JHS/EDS-HT. The humanisation framework was developed for health and social care and uses the philosophy behind well-being and what makes well-being possible. This paper explores how HPs may use aspects of the framework to understand the condition and empower and motivate those with JHS/EDS-HT to be active participants in their own well-being.

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Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history

Tinkle

Castori²,

Berglund

et al. 2017

American J of Med Genetics Pt C

357

348

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The hypermobile type of Ehlers-Danlos syndrome (hEDS) is likely the most common hereditary disorder of connective tissue. It has been described largely in those with musculoskeletal complaints including joint hypermobility, joint subluxations/dislocations, as well as skin and soft tissue manifestations. Many patients report activity-related pain and some go on to have daily pain. Two undifferentiated syndromes have been used to describe these manifestations-joint hypermobility syndrome and hEDS. Both are clinical diagnoses in the absence of other causation. Current medical literature further complicates differentiation and describes multiple associated symptoms and disorders. The current EDS nosology combines these two entities into the hypermobile type of EDS. Herein, we review and summarize the literature as a better clinical description of this type of connective tissue disorder.

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The effectiveness of therapeutic exercise for joint hypermobility syndrome: a systematic review

Cited by 66 publications

References 23 publications

The feasibility of a randomised controlled trial of physiotherapy for adults with joint hypermobility syndrome

The feasibility of a randomised controlled trial of physiotherapy for adults with joint hypermobility syndrome

A humanisation approach for the management of Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type (JHS/EDS-HT)

Hypermobile Ehlers–Danlos syndrome (a.k.a. Ehlers–Danlos syndrome Type III and Ehlers–Danlos syndrome hypermobility type): Clinical description and natural history

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