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

Terry, Rohini H.; Palmer, Shea T.; Rimes, Katharine A.; Clark, Carol J.; Simmonds, Jane V.; Horwood, Jeremy P.

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Rohini H. Terry

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Shea Palmer
Occasional Associate Lecturer - CHSS - HSW

Katharine A. Rimes

Carol J. Clark

Jane V. Simmonds

Jeremy P. Horwood


© The Author 2015. Published by Oxford University Press. All rights reserved. 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.


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

Journal Article Type Article
Publication Date Jun 1, 2015
Deposit Date Mar 25, 2015
Publicly Available Date May 5, 2016
Journal Family Practice
Print ISSN 0263-2136
Electronic ISSN 1460-2229
Publisher Oxford University Press (OUP)
Peer Reviewed Peer Reviewed
Volume 32
Issue 3
Pages 354-358
Keywords benign hypermobility syndrome, diagnosis, Ehlers-Danlos syndrome, hypermobility type, life experiences, referral, self-management
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