1. Exercise Interventions for AS Patients Melanie Martin MSc MCSP Guy’s & St Thomas’ NHS Foundation Trust November 2014

2. Overview of Exercise Interventions Patient Choice Current physiotherapy provision for Axial Spondyloarthritis at Guy’s & St Thomas’ NHS Foundation Trust Self-Management Group Intervention: ASK Future work

3. Patient Choice Not simply ‘to be or not to be’ compliant Exercise behaviour preferences (Porter, 2009) Decisional balance –merits of change Stage of Change Model (Prochaska & DiClemente, 1983) Disease experience Short and Long-Term Goals NASS

4. Physiotherapy Management Pathways Annual Review (in Rheumatology Clinic) IBP hydrotherapy Class ASK Axial Spondyloarthritis Know-How 1:1 physiotherapy Patient Choice Rheumatology Help-line

5. IBP Hydrotherapy Class Rapid access to Hydrotherapy Rheumatology help-line –Flare-ups Patient experience and preference 4-6 weekly sessions PROMs

6. IBP Hydrotherapy Class Referrals to IBP ClassN = 16 Source of ReferralRheumatology = 7 MSK = 3 GPs = 5 MCATTS = 1 Flare-upN = 11 Average wait13 days First contact in hydroN = 12 Course completed10/16 attended 4/4 sessions Minimum attended = 2 OutcomesAll PROMs improved (BASDAI 1-3 points) Improvement reported =40-80% VASP change = 2-4 points RecommendationsChange time of class Future service standard=< 8 days wait

7. ASK Axial Spondyloarthritis Know-How Self-Management Group Intervention Know-How: The knowledge and skill required to do something correctly A S K

8. Aims of the ASK Self-Management Group To provide training, participation and understanding of the role of hydrotherapy in the self-management of the symptoms of Axial SpA. To provide training, participation and understanding of the role of exercise (fitness, strength, stretching) in the self- management of the symptoms of Axial SpA. To deliver brief training and provide a range of self- management learning resources to support self-management of the symptoms of Axial SpA. To enhance self-efficacy in the long-term self-management of Axial SpA.

9. ASK: Self-Management ‘ An individuals ability to manage the symptoms, treatment, physical and psychological consequences and lifestyle inherent in living with a chronic condition’. Barlow et al (2002) Problem-solving Decision-making Legitimate use of healthcare resources Building up of partnerships with healthcare providers

10. ASK: Outline of Self-Management Group 2 hrs duration 1 physio + 1 PTA 6 patients Hydro pool and gym Circuit-based pool session Gym session –stretches, CVS, Pilates mat-work etc. –patient- lead Self-Management Education Handbook –reviewed by expert patient and NHS Trust Communication Team

11. ASK Axial Spondyloarthritis Know-How Exercise Hydrotherapy Education

13. The Benefit of a Brief Hospital-Based Group Intervention for Axial Spondyloarthritis The Patients’ Perspective Melanie Martin, Guy’s & St Thomas’ NHS Foundation trust Helen Fiddler, Principal Lecturer, School of Health Sciences University of Brighton September 2014

14. Qualitative Study 2 focus groups (N = 9) 5 male; 4 female - age range 21-72 years; mean 43yrs Diagnosis range 1-44 yrs: mean 13 yrs AS = 6 (4 males); Axial SpA = 3 (2 male) Expectations, experience, beliefs, justification for self- management behaviour following attendance of the ASK programme Data analysis and development of a Conceptual Model Future Work

15. Study Findings: Key Themes Exercise behaviour Disease positioning Temporal Effects of Self-management Education The Group Effect

16. Exercise Behaviour No regular exercise Continued usual exercise habits Other self-management strategies –medication, diet No Change Perceived short-term benefit but which did not lead to maintained exercise behaviour change Temporary Gain Modification to existing exercise behaviour New exercise behaviour 3/9 resumed or joined as new NASS members Maintained Change

17. Key Theme 1: Determinants of Exercise Behaviour Psychological issues ‘You end up in a vicious cycle of not exercising and feeling low and feeling down’ Decisional Balance Gains and losses of change Stages of Change Model (Prochaska & DiClemente (1983) Short and long-term goals ‘I don’t honestly think in the long-term. I’m trying to get out of this situation (flare-up) quickly’ Beliefs about self-management ‘Initially I wanted to know what can the doctors do for me and then I realised it was up to me to try to manage this as best I can and that there is no magic pill and it is something you have to try to manage on a day to day basis.’

18. Key theme 2: Disease Positioning Participants viewed themselves to be ‘different’ to many ‘Better or worse than’ Spectrum disorder ‘You think you are the only one but then you realise that there are many more with so many things in common. It gives you courage to look forward to the future rather than be pessimistic. You become an optimist.’ ‘Because my AS is not that bad as a lot of peoples. I’ve seen a lot of people who are crippled so I’m not as bad at that. I’m not as bad as my dad.’

19. Key Theme 3: Temporal Effects of Self- Management Education ‘Knowledge is power’ Experienced AS versus ‘Beginners’ ‘I was diagnosed a long time ago and I wished I had that (referring to ASK) when I was 19.’ ‘I thought it was excellent because it was a complete introduction for people who have got no knowledge, have got the disease and were told to come along and I think it’s a very good introduction.’ ‘If I was trying ASK for the first time and had not done anything, I would have found the gym and pool work of great help. I think it pointed out to me how good it (ASK) was…but I didn’t really get any benefit…but it was interesting to see how others responded to it.’

20. Key Theme 4: The Group Effect Meeting others and sharing ‘hot tips’ Challenge and comparing to others as a useful measure of disease status Comparisons to NASS group format ‘talking with strangers or with other friends or relatives, its nothing...usually when you tell them its.nah. even with the doctor it is only just a pain. They are not aware of this disease. They are not always the easiest to talk to.’ ‘Its like wow that’s a lot to take in and try and the booklet was quite handy as its got pictures and the NASS app was helpful too. Its’ a bit of an idiot’s guide just to remind you.’ ‘Two hours continuous can be a bit tiring sometimes, not the same day or the next but after two days it catches up with me.’

21. The Benefit of a Brief Hospital-Based Group Intervention for Axial Spondyloarthritis: The Patients’ Perspective The Conceptual Model

22. Disease Course ASK

23. Disease Positioning The group effect Temporal Effects Exercise Behaviour

24. Disease Course Disease Positioning The group effect Temporal Effects Exercise Behaviour ASK

25. The Benefit of the ASK Self-Management Group Early referral to the group is beneficial The ‘Group Effect’ Written information important Focus on emotional aspects of self-management Influenced by disease experience Influences self-help group participation Self-efficacy ‘The confidence to carry out a behaviour necessary to reach a desired goal’ Bandura 1977

26. What did Patients say about ASK?

27. ‘My exercise is more targeted now. I used to do a lot more, I probably did too much. It’s a lot easier now.’ ‘I have joined a NASS group since attending ASK and have found the pool sessions really valuable. I learnt from watching other people move, seeing what exercises they were doing and talking whilst we were exercising.’ ‘I was initially quite scared of exercising when I had a flare-up as I felt I was damaging my body. I know everywhere it says don’t be scared of moving but during flare-ups I went into comfort mode.’ ‘As a result of attending the ASK group it was for me to think about the bigger questions about how I’m going to manage long-term addressing those sorts of issues personally.’ ‘The handbook helped me realise that I can take control of my life rather than waiting for the pain to come which is what I used to do.’ ‘I was hoping to pick up on trends so if more people are saying one thing then maybe that would be a way of managing of adapting my lifestyle to see how they have managed it.’

28. Future Work Annual Review - Arthritis Self-Efficacy Scale (ASES) Rheumatology help-line –Flare-up Management Future collaborations across NHS organisations Multi-site treatment trial Expert Patients in AS Self-Management NASS Research Agenda Work-stability Fatigue Management Self-Management Handbook

29. Thank you for listening Melanie.Martin@gstt.nhs.uk