title: Physiotherapy management of joint hypermobility syndrome--a focus group study of patient and health professional perspectives.
abstract: OBJECTIVE
  To develop an understanding of patient and health professional views and experiences of physiotherapy to manage joint hypermobility syndrome (JHS).
  
  
  METHODS
  An explorative qualitative design. Seven focus groups were convened, audio recorded, fully transcribed and analysed using a constant comparative method to inductively derive a thematic account of the data.
  
  
  METHODS
  Four geographical areas of the U.K.
  
  
  METHODS
  25 people with JHS and 16 health professionals (14 physiotherapists and two podiatrists).
  
  
  RESULTS
  Both patients and health professionals recognised the chronic heterogeneous nature of JHS and reported a lack of awareness of the condition amongst health professionals, patients and wider society. Diagnosis and subsequent referral to physiotherapy services for JHS was often difficult and convoluted. Referral was often for acute single joint injury, failing to recognise the long-term multi-joint nature of the condition. Health professionals and patients felt that if left undiagnosed, JHS was more difficult to treat because of its chronic nature. When JHS was treated by health professionals with knowledge of the condition patients reported satisfactory outcomes. There was considerable agreement between health professionals and patients regarding an 'ideal' physiotherapy service. Education was reported as an overarching requirement for patients and health care professionals.
  
  
  CONCLUSIONS
  Physiotherapy should be applied holistically to manage JHS as a long-term condition and should address injury prevention and symptom amelioration rather than cure. Education for health professionals and patients is needed to optimise physiotherapy provision. Further research is required to explore the specific therapeutic actions of physiotherapy for managing JHS.
authors.affiliation: Department of Allied Health Professions, University of the West of England, Blackberry Hill, Bristol BS16 1DD, UK. Electronic address: Shea.Palmer@uwe.ac.uk.
authors.forename: S
authors.initials: S
authors.lastname: Palmer
authors.affiliation: Bristol Randomised Trials Collaboration (BRTC), School of Social and Community Medicine, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol BS8 2PS, UK.
authors.forename: R
authors.initials: R
authors.lastname: Terry
authors.affiliation: Institute of Psychiatry, Psychology and Neuroscience, King's College London, De Crespigny Park, London SE5 8AF, UK.
authors.forename: K A
authors.initials: KA
authors.lastname: Rimes
authors.affiliation: School of Health and Social Care, Bournemouth University, Bournemouth BH1 3LT, UK.
authors.forename: C
authors.initials: C
authors.lastname: Clark
authors.affiliation: Institute of Child Health, University College London, 30 Guilford Street, London WC1N 1EH, UK.
authors.forename: J
authors.initials: J
authors.lastname: Simmonds
authors.affiliation: Bristol Randomised Trials Collaboration (BRTC), School of Social and Community Medicine, University of Bristol, Canynge Hall, 39 Whatley Road, Bristol BS8 2PS, UK.
authors.forename: J
authors.initials: J
authors.lastname: Horwood
mesh_terms: D000328:Adult; D002908:Chronic Disease; D005260:Female; D017144:Focus Groups; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007593:Joint Instability / Q000503:physiopathology* / Q000534:rehabilitation*; D008137:Longitudinal Studies; D008297:Male; D008875:Middle Aged; D026741:Physical Therapy Modalities; D036301:Qualitative Research; D011795:Surveys and Questionnaires; D013577:Syndrome; D006113:United Kingdom; D055815:Young Adult
keywords: Benign hypermobility syndrome; Ehlers–Danlos syndrome hypermobility type; Focus groups; Life experiences; Physiotherapy