An exploration of the prevalence of hypermobility and joint hypermobility syndrome in Omani women attending a hospital physiotherapy service

Clark, Carol; Simmonds, Jane

doi:10.1002/msc.184

Cited by 36 publications

(25 citation statements)

References 33 publications

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“…[24][25][26][27] A recent systematic review and meta-analysis has also confirmed the impact of JHS on a range of psychological variables such as fear, agoraphobia, anxiety, depression and panic disorders. 28 Physiotherapy, particularly exercise, is generally considered the mainstay of treatment, 2,8,9,15,[29][30][31] and professionals in a number of centres in the UK have developed a specialist interest in treating people with JHS. It should be recognised that 'physiotherapy' is not an intervention in itself but describes professional practice in which a range of interventions is often employed in complex treatment 'packages'.…”

Section: Fundingmentioning

confidence: 99%

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%

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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“…Joint Hypermobility Syndrome/Ehlers-Danlos Syndrome-Hypermobility Type (JHS/EDS-HT) is a multisystemic condition commonly seen by health professionals (HPs) (Clark & Simmonds, 2011; Connelly, Hakim, Davenport, & Simmonds, 2015). 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).…”

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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“…Prevalence of JHS in various patient populations is reported to be much higher: 30 % in patients seen in a musculoskeletal triage clinic [24], 47 % in fibromyalgia [25], and 51 % in physiotherapy patients [26].…”

Section: Introductionmentioning

confidence: 99%

Prevalence, injury rate and, symptom frequency in generalized joint laxity and joint hypermobility syndrome in a “healthy” college population

2015

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Generalized joint hypermobility (GJH) and joint hypermobility syndrome (JHS) are gaining increased attention as potential sources of pain and injury. The aims of this study were to evaluate prevalence of GJH and JHS and to determine whether musculoskeletal injuries and symptoms commonly attributed to GJH and JHS were more common within a Bhealthy^college student population. The study involved a convenience sample of 267 college and graduate students, aged 17-26. GJH was assessed using the Beighton score with a cutoff of 5/9, while JHS was assessed using the Brighton criteria. Injury history and symptoms were assessed by recall. Prevalence of GJH was 26.2 % overall (females 36.7 %, males 13.7 %). Prevalence of JHS was 19.5 % overall (females 24.5 %, males 13.7 %). Injury rates were not significantly different for individuals who had GJH vs. those who did not have GJH. Individuals with JHS were significantly more likely to have had sprains, back pain, and stress fractures. Symptoms were no different between those with GJH and those who did not have GJH. However, individuals with JHS were significantly more likely to report clumsiness, easy bruising, and balance problems than those who did not have JHS. GJH and JHS were relatively common in this healthy college student population; GJH was not associated with increased incidence of injury or symptoms commonly attributed to JHS, but JHS was associated with increased incidence of some injuries and symptoms.

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An exploration of the prevalence of hypermobility and joint hypermobility syndrome in Omani women attending a hospital physiotherapy service

Abstract: This study confirms a high prevalence of JHS among subjects with musculoskeletal signs and symptoms and that re-attendance for physiotherapy treatment is more frequent in subjects with JHS than in those without.

Cited by 36 publications

References 33 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)

Prevalence, injury rate and, symptom frequency in generalized joint laxity and joint hypermobility syndrome in a “healthy” college population

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