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

Terry, R.H., Palmer, S.T., Rimes, K.A., Clark, C. J., Simmonds, J.V. and Horwood, J.P., 2015. Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care. Family Practice, 32 (3), 354 - 358.

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Living with joint hypermobility syndrome: patient experiences of diagnosis, referral and self-care.pdf - Published Version
Available under License Creative Commons Attribution Non-commercial.


DOI: 10.1093/fampra/cmv026


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.

Item Type:Article
Uncontrolled Keywords:Benign hypermobility syndrome ; Ehlers–Danlos syndrome ; diagnosis ; hypermobility type ; life experiences ; referral ; self-management. ; Adolescent ; Adult ; Ehlers-Danlos Syndrome ; Fatigue ; Female ; Focus Groups ; Health Knowledge, Attitudes, Practice ; Health Personnel ; Health Services Accessibility ; Humans ; Joint Instability ; Male ; Middle Aged ; Pain ; Physical Therapy Modalities ; Proprioception ; Qualitative Research ; Self Care ; Sickness Impact Profile ; Socioeconomic Factors ; United Kingdom ; Young Adult
Group:Faculty of Health & Social Sciences
ID Code:30064
Deposited By: Symplectic RT2
Deposited On:23 Jan 2018 16:49
Last Modified:14 Mar 2022 14:08


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