“We’ve all been passed from pillar to post”: Patient experiences of living with Joint Hypermobility Syndrome.
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 characterised by joint laxity, pain and fatigue and physiotherapy is usually the preferred treatment option. Although JHS is not an uncommon disorder, research in this area is relatively scarce and the lived experience of JHS from patients’ perspectives has received little attention. The aim of the current investigation was to examine patients’ lived experience of JHS, and their views and experiences of JHS diagnosis and management.
Focus groups in four locations in the United Kingdom were convened, involving 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.
In total 25 individuals with JHS (aged 19-66 years, 22 women) participated in the focus groups. Findings revealed that pain, fatigue, proprioception difficulties, and repeated cycles of injury were among the most challenging features of living with JHS. Participants also explained the psychosocial consequences of living with JHS. Patients perceived JHS to be often poorly understood by health professionals and those in their wider social environment and reported feeling fraudulent and blamed for their symptoms. Participants felt that a lack of awareness of JHS amongst health professionals meant that obtaining a diagnosis of JHS was often difficult and access to appropriate health care services was often slow and convoluted. Participants had been misdiagnosed or treated for isolated symptoms (e.g. single joint pain) rather than the condition itself. Participants highlighted the importance of a correct diagnosis in facilitating access to appropriate healthcare, support and education.
Primary care practitioners play an important role in helping patients to understand and self-manage long term health conditions. A pre-requisite of being able to provide support for people with JHS is that primary care practitioners are able to recognise and diagnose JHS and to refer patients to JHS trained specialists. Timely diagnosis and access to health professionals who understand JHS may be particularly instrumental in helping to ameliorate symptoms, provide biopsychosocial support and help people with JHS to self-manage their condition. Increased awareness of JHS symptoms in primary care and education for both clinicians and patients could help improve the diagnosis and referral processes. Patients and practitioners may be able to learn from one another and so assist in developing a deeper understanding of a currently poorly understood condition.
- Rohini Terry, University of the West of England, Bristol, UK
- Shea Palmer, Kings College London, London, UK
- Katharine Rimes, Bournemouth University, Bournemouth, UK
- Carol Clark, UCL, London, UK
- Jane Simmonds
- Jeremy Horwood, University of the West of England, Bristol, UK