J. Simmonds

Living with joint hypermobility syndrome. Patient experiences of diagnosis, referral and self-care

Background. Musculoskeletal problems are common reasons for seeking primary health care. It has been suggested that many people with ‘everyday’ non-inflammatory musculoskeletal problems may have undiagnosed joint hypermobility syndrome (JHS), a complex multi-systemic condition. JHS is characterized by joint laxity, pain, fatigue and a wide range of other symptoms. Physiotherapy is usually the preferred treatment option for JHS, although diagnosis can be difficult. The lived experience of those with JHS requires investigation. Objective. The aim of the study was to examine patients’ lived experience of JHS, their views and experiences of JHS diagnosis and management. Methods. Focus groups in four locations in the UK were convened, involving 25 participants with a prior diagnosis of JHS. The focus groups were audio recorded, fully transcribed and analysed using the constant comparative method to inductively derive a thematic account of the data. Results. Pain, fatigue, proprioception difficulties and repeated cycles of injury were among the most challenging features of living with JHS. Participants perceived a lack of awareness of JHS from health professionals and more widely in society and described how diagnosis and access to appropriate health-care services was often slow and convoluted. Education for patients and health professionals was considered to be essential. Conclusions. Timely diagnosis, raising awareness and access to health professionals who understand JHS may be particularly instrumental in helping to ameliorate symptoms and help patients to self-manage their condition. Physiotherapists and other health professionals should receive training to provide biopsychosocial support for people with this condition.

A study exploring the prevalence of Joint Hypermobility Syndrome in patients attending a Musculoskeletal Triage Clinic

© 2014 IOS Press and the authors. BACKGROUND: Generalised joint hypermobility (GJH) is common in the general population and may not confer any adverse symptoms. Joint Hypermobility Syndrome (JHS) is a connective tissue disorder that often runs in families and may present with a complex array of signs and symptoms. JHS is under-recognised and often poorly managed by the medical and physiotherapy professions. OBJECTIVES: The primary aim of this study was to investigate the prevalence of GJH and JHS in patients attending a Musculoskeletal Triage Clinic. Secondary aims of this study were to explore the health-related quality of life, pain levels, primary pain area and number of painful joints in patients with and without JHS. METHOD: A cross-sectional study design was used. The participant population included a convenience sample from patients attending a Musculoskeletal Triage Clinic based in a Primary Care setting in London. The main outcome tools were the Beighton Score, Brighton Criteria, the EQ-5D-5 L and the Visual Analogue Scale (VAS). RESULTS: A total of 150 participants were recruited into the study. GJH was recorded in 19% of participants and JHS was recorded in 30% of participants. Participants with JHS reported a greater number of painful joints (p < 0.05) than those without. No difference was found in the EQ-5D-5 L and the global VAS scores between the group with JHS and the group without. Participants with JHS (p < 0.01) were found to be more likely to present with wrist/hand pain as their main problem compared to those without JHS. CONCLUSIONS: This study found GJH in 19% and JHS in 30% of participants attending a Musculoskeletal Triage Clinic. This study also found that patients with JHS are likely to present with a greater number of painful joints and are more likely to present with wrist/hand pain as their main problem than those without JHS.

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

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.

Knowledge and Perceptions of Joint Hypermobility and Joint Hypermobility Syndrome amongst Paediatric Physiotherapists

© 2014 IOS Press and the authors. OBJECTIVES: To explore knowledge and perceptions of Joint Hypermobility (JHM) and Joint Hypermobility Syndrome (JHS) amongst paediatric physiotherapists and to determine training needs. DESIGN: National online survey. SETTING AND PARTICIPANTS: UK paediatric physiotherapists were surveyed through the interactive website of the Chartered Society of Physiotherapy (iCSP). INTERVENTION: A previously validated, self-report questionnaire with minor modifications was distributed nationally via iCSP. RESULTS: Ninety-one questionnaires were completed with representation from all NHS regions. 84% (76/91) of respondents had 6 or more years of experience. Fifty-one percent (46/91) of physiotherapists had received no pre-or post-registration training about JHS. Seventy-nine percent (72/91) were confident in their ability to diagnose JHM, while 54% (49/91) were confident in their ability to diagnose JHS. The physiotherapists had better knowledge of the articular features than the non-articular features of JHS with mean knowledge scores of 63.8% and 54.7% respectively. Eighty percent (73/91) of physiotherapists perceived JHS to have significant impact on quality of life. Education and reassurance, home exercises, proprioception, closed chain exercises, postural education and orthotics, were perceived by more than 80% respondents as effective. Ninety-seven percent (88/91) indicated a need for continuing professional development (CPD) training. CONCLUSIONS: The majority of respondents considered JHS to impact significantly on quality of life. Participants had greater confidence in diagnosing JHM than JHS and had better knowledge of the articular features than the non-articular features of JHS. Results suggest that undergraduate and CPD education is required to facilitate greater understanding of the assessment and management of this multi-system condition.

A study of UK physiotherapists’ knowledge and training needs in hypermobility and hypermobility syndrome

A study of UK physiotherapists’ knowledge and training needs in Hypermobility and Hypermobility Syndrome Lyell, M.J., Simmonds, J.V. c, & Deane, J.A. aUniversity of Hertfordshire, School of Health and Human Social Work, Hatfield, UK. b University College London, Institute of Child Health, London, UK: c Hospital of St John and St Elizabeth, Hypermobility Unit, London, UK. d Imperial College London, MSK Lab, School of Medicine, London, UK.

Generalized joint hypermobility: a timely population study and proposal for Beighton cut-offs

This editorial refers to Beighton scores and cut-offs across the lifespan: cross-sectional study of an Australian population, Harjodh Singh et al.

Where do People with Joint Hypermobility Syndrome Present in Secondary Care? The Prevalence in a General Hospital and the Challenges of Classification

Where do People with Joint Hypermobility Syndrome Present in Secondary Care? The Prevalence in a General Hospital and the Challenges of Classification May To*, Jane Simmonds & Caroline Alexander Department of Therapies, Charing Cross Hospital, London, UK The hypermobility unit at Hospital of St. John and St Elizabeth, London, UK and the Institute of Child Health, University College London, London, UK Department of Physiotherapy, Charing Cross Hospital, London, UK

Exercise beliefs and behaviours of individuals with Joint Hypermobility syndrome/Ehlers–Danlos syndrome – hypermobility type

Abstract Purpose: To explore exercise beliefs and behaviours of individuals with Joint Hypermobility syndrome/Ehlers–Danlos syndrome – hypermobility type and to explore patient experiences of physiotherapy. Methods: A cross sectional questionnaire survey design was used to collect quantitative and qualitative data from adult members of the Hypermobility Syndromes Association and Ehlers–Danlos Syndrome Support UK. Descriptive and inferential statistics were used to analyse the data. Qualitative data was analysed thematically. Results: 946 questionnaires were returned and analysed. Participants who received exercise advice from a physiotherapist were 1.75 more likely to report high volumes of weekly exercise (odds ratio [OR] = 1.75, 95% confidence interval [CI] = 1.30–2.36, p < 0.001) than those with no advice. Participants who believed that exercise is important for long-term management were 2.76 times more likely to report a high volume of weekly exercise compared to the participants who did not hold this belief (OR = 2.76, 95% CI = 1.38–5.50, p = 0.004). Three themes emerged regarding experience of physiotherapy; physiotherapist as a partner, communication – knowledge, experience and safety. Conclusion: Pain, fatigue and fear are common barriers to exercise. Advice from a physiotherapist and beliefs about the benefits of exercise influenced the reported exercise behaviours of individuals with Ehlers–Danlos syndrome – hypermobility type in this survey. Implications for rehabilitation Exercise is a cornerstone of treatment for Ehlers–Danlos syndrome/Ehlers–Danlos syndrome – hypermobility type. Pain, fatigue and fear of injury are frequently reported barriers to exercise. Advice from physiotherapists may significantly influence exercise behaviour. Physiotherapists with condition specific knowledge and good verbal and non-verbal communication facilitate a positive therapeutic experience.

Saturday 2 May 2015 15:02Room 331–332Living with joint hypermobility syndrome. Patient experiences of diagnosis, referral and self-care

Background. Musculosk eletal problems are common reasons for seeking primary health care. It has been suggested that many people with ‘everyday’ non-inflammatory musculoskeletal problems may have undiagnosed joint hypermobility syndrome (JHS), a complex multi-systemic condition. JHS is characterized by joint laxity, pain, fatigue and a wide range of other symptoms. Physiotherapy is usually the preferred treatment option for JHS, although diagnosis can be difficult. The lived experience of those with JHS requires investigation. Objective. The aim of the study w as to examine patients’ lived experience of JHS, their views and experiences of JHS diagnosis and management. Methods. F ocus groups in four locations in the UK were convened, involving 25 participants with a prior diagnosis of JHS. The focus groups were audio recorded, fully transcribed and analysed using the constant comparative method to inductively derive a thematic account of the data. Results. P ain, fatigue, proprioception difficulties and repeated cycles of injury were among the most challenging features of living with JHS. Participants perceived a lack of awareness of JHS from health professionals and more widely in society and described how diagnosis and access to appropriate health-care services was often slow and convoluted. Education for patients and health professionals was considered to be essential. Conclusions. T imely diagnosis, raising awareness and access to health professionals who understand JHS may be particularly instrumental in helping to ameliorate symptoms and help patients to self-manage their condition. Physiotherapists and other health professionals should receive training to provide biopsychosocial support for people with this condition.