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.
Bristol Randomised Trials Collaboration (BRTC), School of Social and Community Medicine, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol BS8 2PS, shea.palmer@uwe.ac.uk.
Rohini H
RH
Terry
Department of Allied Health Professions, University of the West of England, Blackberry Hill, Bristol BS16 1DD, shea.palmer@uwe.ac.uk.
Shea T
ST
Palmer
Institute of Psychiatry, Psychology and Neuroscience, Kings College London, De Crespigny Park, London SE5 8AF.
Katharine A
KA
Rimes
School of Health and Social Care, Bournemouth University, Bournemouth BH1 3LT and.
Carol J
CJ
Clark
Institute of Child Health, University College London, 30 Guilford Street, London WC1N 1EH, UK.
Jane V
JV
Simmonds
Bristol Randomised Trials Collaboration (BRTC), School of Social and Community Medicine, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol BS8 2PS.
Jeremy P
JP
Horwood
D000293:Adolescent; D000328:Adult; D004535:Ehlers-Danlos Syndrome / Q000145:classification / Q000503:physiopathology* / Q000523:psychology; D005221:Fatigue / Q000209:etiology; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006282:Health Personnel / Q000193:education*; D006297:Health Services Accessibility; D006801:Humans; D007593:Joint Instability / Q000151:congenital* / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000209:etiology; D026741:Physical Therapy Modalities; D011434:Proprioception; D036301:Qualitative Research; D012648:Self Care; D018434:Sickness Impact Profile; D012959:Socioeconomic Factors; D006113:United Kingdom; D055815:Young Adult
Benign hypermobility syndrome; Ehlers–Danlos syndrome; diagnosis; hypermobility type; life experiences; referral; self-management.