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Exercise Interventions for AS
PatientsMelanie Martin MSc MCSP
Guy’s & St Thomas’ NHS Foundation Trust
November 2014
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
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
Physiotherapy Management Pathways
Rheumatology Help-line
IBP Hydrotherapy Class
Rapid access to Hydrotherapy
Rheumatology help-line –Flare-ups
Patient experience and preference
4-6 weekly sessions
PROMs
IBP Hydrotherapy ClassReferrals to IBP Class N = 16
Source of Referral Rheumatology = 7MSK = 3GPs = 5MCATTS = 1
Flare-up N = 11
Average wait 13 days
First contact in hydro N = 12
Course completed 10/16 attended 4/4 sessionsMinimum attended = 2
Outcomes All PROMs improved (BASDAI 1-3 points)Improvement reported =40-80%VASP change = 2-4 points
Recommendations Change time of class
Future service standard =< 8 days wait
ASKAxial Spondyloarthritis Know-How
Self-Management Group Intervention
Know-How: The knowledge and skill required to do something correctly
A
S
K
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.
ASK: Self-Management
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
ASKAxial Spondyloarthritis Know-How
The Benefit of a Brief Hospital-Based Group Intervention for
Axial Spondyloarthritis
The Patients’ Perspective
Melanie Martin, Guy’s & St Thomas’ NHS Foundation trustHelen Fiddler, Principal Lecturer, School of Health SciencesUniversity of Brighton
September 2014
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
Study Findings: Key Themes
Exercise behaviour
Disease positioning
Temporal Effects of Self-management Education
The Group Effect
Exercise Behaviour
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.’
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.’
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.’
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.’
The Benefit of a Brief Hospital-Based Group Intervention for Axial
Spondyloarthritis: The Patients’ Perspective
The Conceptual Model
Disease Course
ASK
Disease Course
ASK
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
What did Patients say about ASK?
‘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.’
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
Thank you for [email protected]
