1. Diagnosis, management & assessment of adults with joint hypermobility syndrome: UK-wide survey of physiotherapy practice Shea Palmer a, Fiona Cramp a, Rachel Lewis b, Shahid Muhammad a, Emma Clark c a Department of Allied Health Professions, University of the West of England, Bristol. b Physiotherapy Department, North Bristol NHS Trust. c Musculoskeletal Research Unit, University of Bristol. Introduction Joint Hypermobility Syndrome (JHS) is a heritable disorder associated with excessive joint range of motion and pain in the absence of inflammatory joint disease. Symptomatic joint hypermobility is reported to affect approximately 5% of women and 0.6% of men 1. Although a common cause of pain it is generally understood to be under-recognised and poorly managed in clinical practice. We need a much better understanding of current physiotherapy practice to inform research and training. Aim To identify how JHS is diagnosed, managed and assessed in routine physiotherapy practice. Methods The survey was developed from similar practice surveys, a literature review and consultation with researchers and clinicians. Paper copies were sent to 201 randomly selected secondary care organisations across the United Kingdom (UK) and an electronic version was advertised through physiotherapy professional networks. Results were analysed and presented using descriptive statistics (% of valid responses). Results A total of 66 responses (80% women) were received from across the UK from physiotherapists with a wide range of clinical experience. 68% reported no formal training in JHS management. 69% reported not using the recommended Brighton diagnostic criteria for JHS. An ‘average’ service offers a first assessment of at least 40 minutes, follow-up appointments of 30 minutes or less, with a maximum of six sessions across 4 months (Table 1). 30% of respondents offer maintenance reviews ‘always’ or ‘frequently’. Table 1. Information about service delivery (% of valid responses) The stated aims of physiotherapy and the specific interventions employed seemed well matched, with a focus on advice, education, exercise and self- management (Tables 2 and 3). Table 2. “What do you consider to be the aims of physiotherapy for JHS?” (10 most popular responses, % of valid responses) Table 3. “What interventions do you use for JHS?” (10 most popular responses, % of valid responses)) Although pain relief was not reported as a high priority in terms of treatment aims, pain was most often assessed as an outcome (Table 4), suggesting a mismatch between what clinicians aim to achieve and what they measure. Table 4. “What outcome measures do you use for individuals with JHS?” (10 most popular responses, % of valid responses) Conclusions The results suggest that reported management strategies are broadly appropriate to long term musculoskeletal conditions but that additional training specific to JHS may be required, particularly in relation to diagnosis and assessment. It is not possible to comment on the appropriateness or effectiveness of the reported service delivery patterns but they seem similar to those described for other musculoskeletal outpatient services 2. Further research is required to establish optimal physiotherapy interventions for JHS 3. References: 1. Simpson MR (2006) Benign joint hypermobility syndrome: evaluation, diagnosis, and management. J Am Osteopath Assoc Clin Pract, 106(9):531-6. 2. CSP (2011) A survey of NHS Physiotherapy waiting times, workforce and caseloads in the UK 2010-2011. Chartered Society of Physiotherapy, London. 3. Palmer S et al (2014) The effectiveness of therapeutic exercise for joint hypermobility syndrome: a systematic review. Physiotherapy, 100:220-227. Funding: The University of the West of England, Faculty of Health & Life Sciences. Ethical Approval: Faculty of Health & Life Sciences Ethics Subcommittee, University of the West of England, Bristol (HLS/13/05/67). AlwaysFrequentlySometimesRarelyNeverN/A Education96.93.10.0 Enhance self-management93.84.61.50.0 Encourage long-term exercise90.89.20.0 Improve muscle control76.921.51.50.0 Improve posture/ergonomics73.823.13.10.0 Teach joint protection71.425.41.60.0 1.6 Improve function67.723.19.20.0 Increase strength55.639.74.80.0 Reduce fear avoidance52.335.410.81.50.0 Improve balance50.028.121.90.0 AlwaysFrequentlySometimesRarelyNeverN/A Advice96.93.10.0 Education96.93.10.0 Self-management89.14.73.11.6 0.0 Exercise (muscle control)67.730.81.50.0 Posture re-education62.531.36.30.0 Exercise (proprioception)61.527.79.21.50.0 Goal setting60.914.121.93.10.0 Physical activity59.431.37.81.60.0 Pacing52.336.910.80.0 Exercise (functional)50.839.79.50.0 AlwaysFrequentlySometimesRarelyNeverN/A Pain scale57.625.46.83.46.80.0 Patient agreed52.913.79.82.019.62.0 Strength46.821.38.56.414.92.1 Functional test38.022.04.0 30.02.0 Range of movement37.817.822.20.022.20.0 EQ5D34.011.3 3.837.71.9 Other20.010.0 5.045.010.0 Proprioception18.231.813.62.329.54.5 MYMOP14.919.121.34.338.32.1 SF12/SF3611.67.09.34.762.84.7 “What is the duration (on average) of the first assessment?”86% ≥40 minutes “What is the duration (on average) of each treatment session?”95% ≤30 minutes “How many sessions (on average) do you offer (including the first assessment)?” 79% ≤6 sessions “Over what duration (on average) do you treat each individual with JHS?”72% ≤4 months “Do you provide a follow-up maintenance review for individuals with JHS?”39% ‘rarely’ or ‘never’ 30% ‘always’ or ‘frequently’  Shea.Palmer@uwe.ac.uk