The Impact of Joint Hypermobility Syndrome

Transcription

1 The Impact of Joint Hypermobility Syndrome Prof Shea Palmer Professor of Musculoskeletal Rehabilitation

2 Overview What is Joint Hypermobility Syndrome (JHS)? Understanding and measuring the impact of JHS Focus groups with patients Developing a questionnaire Other work Reflections on the influence of patient research partners and participants

3 What is Joint Hypermobility Syndrome (JHS)? Excessive joint range of motion in the presence of pain (Grahame 2003) Problems include pain, proprioception, strength, walking, fitness, function, anxiety and QoL Symptomatic joint hypermobility in adults: 5% women, 0.6% men (Simpson 2006) Brighton criteria (1998) now recommended for diagnosis (Grahame 2000)

4 Diagnosis - Brighton Criteria

5 Impact of JHS Anecdotally, many issues (Grahame 2003): anxiety, fitness, gait, pain, proprioception, QoL, strength Fatoye et al (2009, 2011, 2012) identified gait, pain, proprioception, QoL, ROM, strength in children but true impact of JHS in adults to be established informs assessment and management

6 Outcome Assessment in JHS A general health questionnaire (SF-36) and an arthritis questionnaire (AIMS-2) improve following exercise (Sahin et al 2008, Ferrell et al 2004) We don t know anything about other aspects of existing questionnaires in JHS and those questionnaires don t ask about many issues raised by JHS patients Need for a JHS-specific questionnaire Asks relevant questions (and not irrelevant ones) Scores change when JHS changes Scores stay the same when JHS stays the same

7 Aims 1. To understand the impact of JHS 2. To develop a JHS-specific questionnaire Funded by North Bristol NHS Trust Flexibility & Sustainability Fund ( 16k), Faculty of Health & Life Sciences ( 11k), Centre for Health & Clinical Research ( 1.1k)

8 Understanding the impact of JHS Participants: Referred for physiotherapy at NBT Met Brighton criteria for JHS 18 years x2 patient focus groups (n=12) Individual telephone interviews (n=3) Total n=15 (n=2 men)

9 Functional limitations Walking (stumble/trip, uneven ground, brisk walking, wandering) Climbing and descending stairs Sitting still (>30min, getting up after >30min) Shoulders (reaching up to high shelves, hair brushing) Twisting, pushing and bending (squatting, heavy doors) Holding and gripping (opening jars, peeling/chopping vegetables, carrying a full saucepan) Lifting and carrying (heavy bag) Sleeping (getting comfortable v sleep disturbance) Spatial awareness (coordination, control of movement)

10 Activities affected by hypermobility Work/study (e.g. writing ) Home (e.g. daily activities) Socialising (e.g. social/family activities) Exercise/sport (e.g. ability to exercise)

11 Living with hypermobility Fatigue Anxiety (getting worse, trip or fall) Planning and management (choice of footwear/transport, unexpected pain, joints giving way ) Strength and weakness ( tight, strong, held together )

12 Other Findings Desirable outcomes from physiotherapy Reduction in pain/better pain management Return to normal activities (gym or other forms of exercise) Joints to feel tighter and under control Reduction in dislocations More management over self Reduction in flare-ups To feel strong, sucked back in, tightened up, strengthening of your body Reigniting awareness of what you should or shouldn t be doing Provide knowledge of how to protect joints in the future

13 Questionnaire Development Working group (x2 patient research partners and research team) developed a draft questionnaire Think aloud analysis (n=4 women) Further refinement by the working group Final draft had 94 scored questions(!!) Sent to n=1,504 Hypermobility Syndromes Association (HMSA) members (with SF-36)

14 Questionnaire n=636 responses x 184 variables = 117,024 data items(!!) entry and cleaning huge task N=624 analysed (n=12 <18 years) Characteristics: age = 39 years; 95% women; 98% white Site of pain: Back 90%; Knees 86%; Shoulders 84%; Hips 83%; Neck 80%, Hands 79%; Wrists 78%; Feet 73%, Ankles 66%, Elbows 49%

15 Questionnaire Development Criteria for removing questions: <40% severity (n=37 removed) Correlation with other Qs (r 0.7) (n=2 removed) Final n=55 scored questions (original n=94) Strongly related to the SF-36 Physical Component Score (r=0.722) (Mental Component Score r=0.446) Fatigue scores (BRAF-NRS) comparable to Rheumatoid Arthritis (Nicklin et al 2010) Re-named the Bristol Impact of Hypermobility (BIoH) questionnaire

16 Other Work Further information needed on usefulness of the BIoH questionnaire funding applications BIoH used in a study of physiotherapy for JHS: Intervention developed with research partners following patient focus groups (x4, n=25, 3 men) Paper on patient lived experience Paper on experiences of physiotherapy Physiotherapy intervention piloted (n=8 patients) and amended (n=6 patient interviews)

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18 Other Work Systematic review of the impact of JHS PhD student (Najla Siri) investigating the impact of JHS (walking, jumping, tissue stiffness, muscle strength, proprioception, pain, general health (SF-12), BIoH questionnaire)

19 Reflections on Patient Influences Patients have been central to: Developing and refining research questions Data Monitoring & Ethics and Steering Committees Study management Interpretation of findings Understanding the lived experience of having JHS Developing BIoH questionnaire Perspectives on physiotherapy treatment Development of physiotherapy intervention Acting as advocates for patients in studies

20 Acknowledgements Patient Research Partners: Alison Cossons, Jennifer Elvin Research Assistants: Dr Ginny Gould, Shahid Muhammad Co-applicants: Dr Emma Clark, Dr Fiona Cramp, Rachel Lewis, Sarah Nehammer PEP-R Group (NBT), Amanda Burston, Genna Lettieri

21 Funders: Acknowledgements Main Collaborators: Additional Collaborators:

22 Thank You