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AStretch 3rd Conference October 2006


AStretch 2nd Conference October 2005

The AStretch 2nd Conference took place on October 19th 2005 at the CSP. Sponsored by two pharmaceutical companies - Wyeth and Schering-Plough, (both involved in the production of anti-TNF drugs - now becoming used more frequently in the management of AS), participants included 34 physiotherapists from around the country who shared a keen interest and expertise in the management of Ankylosing Spondylitis (A.S).

The opening presentation, by Peter Sawyer, from Wyeth was an excellent start to a very successful day. Peter gave a simple yet detailed overview as to how anti-TNF medications work in the management of AS. His extremely understandable talk explained how the balance of pro- and anti-inflammatory cytokinins in the body is important and how anti-TNF medications such as Enteracept can help resolve the imbalances often seen in inflammatory diseases such as AS. Following on from Peter was Matthew Charge from Schering Plough, who gave an interesting presentation on the use of Remicade in AS with particular reference to patient selection for treatment and evidence of effectiveness. This was followed by a lively discussion from the floor, comparing practice in different parts of the country.

Following lunch, Dr. Helen Keen from Leeds University, gave an interesting presentation on Work Instability and AS. This was a very thought stimulating talk as it is often forgotten that AS affects individuals at a time when they are most economically active, (most common in the third decade). With 20% of AS patients losing their jobs due to AS, Dr. Gill Gilworth’s talk on the AS Work Instability Score, (AS-WIS), and ways of reducing Work Disability in AS was extremely interesting.

The final presentation of the day was by Stuart Porter presenting a summary of his PhD work to date on Determinants of Exercise Behaviour in AS. As physiotherapists we spend much of our time wondering why some people attend exercise groups, such as NASS Groups regularly, whilst others do not - and the factors that influence these decision making processes. Stuart’s presentation was very stimulating, giving an invaluable insight into what patients actually think about exercise and AS and it will be very exciting to see the final results of Stuart’s work, hopefully next year.

The conference has been very successful in bringing together practitioners from all around the country to listen to a very high standard of presentations on very relevant topics. Physiotherapists working with AS patients are often isolated and the opportunity to share best practice and network with likeminded individuals was a valuable experience.

AStretch are in the process of organising another conference in November 2006. For more details about this, AStretch or indeed about AS, please see the website. www.astretch.co.uk

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Biographies of the speakers and a summary of their talks

Biography for Stuart Porter. BSc, Grad Dip Phys

Stuart graduated from Manchester Royal Infirmary School of Physiotherapy in 1987 (Graduate Diploma) he later obtained a BSc (Hons) Degree in Health Studies at Salford University. Stuart spent 11 years working in the NHS before taking up post as a lecturer at Salford University, teaching anatomy, orthopaedics, rheumatology and soft tissue injuries. Stuart is currently working on his PhD ‘Determinants of exercise behaviour amongst people with ankylosing spondylitis’ which he hopes to finish in 2006.

Stuart has also been the physiotherapist for the England’s women football team and has travelled with them on several occasions. He has also published 3 books including ‘The dictionary of Physiotherapy‘.

Determinants of exercise behaviour in ankylosing spondylitis

Background
Ankylosing Spondylitis (AS) is a chronic rheumatological disease in which active exercise plays a pivotal self management role. People with AS generally feel much better when they exercise, yet whilst all people with AS are initially taught exercises, many people with AS choose not to do the exercises at all or not in the format in which they have been taught. AS research has not taken account of what people with AS actually do in terms of their day to day self management, the factors influencing these decisions and the role that exercise plays.

Aim
The aim of the study is to identify the factors influencing the decision-making processes of people with AS relating to their exercise behaviour, and to identify, classify and represent these exercise behaviours in a conceptual framework.

Methods
Following a preliminary quantitative survey to establish exercise group attendance frequencies, purposive sampling was employed to ensure a spectrum of beliefs. 20 semi structured interviews were undertaken in people’s homes, each interview was recorded verbatim and transcribed, then data analysis undertaken. A focus group was later held with 8 of these participants to check trustworthiness of the interpretation of the data.

Results
In the interviews a wealth of data emerged that highlights how effective all patients with AS are at making informed choices about what type of exercise is best for them.
Four distinct exercise behaviours have been identified along with four distinct reactions to anthropometric deterioration. Patients describe ongoing and dynamic appraisals of their AS status, a process of cost benefit analysis relating to the use of exercise, encompassing such factors as beliefs about exercise in AS, the results of their physiotherapy assessment measurements, about the role of exercise in the short and long-term management of their condition and about what constitutes exercise. One sub group of people for example modify their activities of daily living, or hobbies to resemble the exercises that they were taught and expressed a preference for this form of activity over prescribed exercises.

Conclusions
The study corroborates aspects of established health behaviour theory but has also generated novel data in AS, which has not been previously described. For example, all patients use anthropometric measurements to monitor the progress of their condition, but for the first time, different reactions in relation to deterioration in anthropometric measurement in AS ranging from inaction to exercise targeted by the anatomical region affected have been identified and categorised. This research has recognised that discrete behavioural pathways are adopted by people who have been diagnosed with AS. Patient’s responses to the need to exercise are informed by their beliefs about exercise, current disease status, experience of managing their own condition and lifestyle demands. Understanding the interaction of these factors has the potential to inform the development of a client-centred approach to exercise programmes in AS tailored to the beliefs, priorities and lifestyles of individuals, and produce a planning tool useful for newly diagnosed people.

Next phase
The single centre conceptual framework will now be taken to focus groups to a different population of patients to asses its trustworthiness, generalisibility and clinical utility.

Supervisory team
Professor J.Goodacre. Director of Clinical Research LPSMH University of Central Lancashire
Dr L Goodacre. Senior Lecturer University of Central Lancashire
Dr J. Smith. Senior Lecturer in Psychology University of Central Lancashire

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Biography for Gill Gilworth MPhil

Gill is a Chartered Physiotherapist currently pursuing her joint interests of research and Occupational Health. Gill’s professional experience includes 10 years in the NHS where she specialised in musculoskeletal out-patients and rehabilitation.

Gill has worked at the University of Leeds since 1994 where she completed an MPhil in 2000. Main research interests include the use of qualitative methodology in the development of health outcome measures, job retention and vocational rehabilitation. Part of her current role as Senior Research Fellow in the Academic Unit of Musculoskeletal Disease is to manage the ‘Extending Working Life’ programme of research; this has included project to develop Work Instability scales for Rheumatoid Arthritis, Ankylosing Spondylitis, Traumatic Brain Injury and for Nurses with musculoskeletal problems. Gill is also a director of Work Fit Occupational Physiotherapy and Ergonomics Services Ltd.

Reducing work disability in Ankylosing Spondylitis: The AS work instability scale (AS-WIS) Gill Gilworth
Academic Unit of Musculoskeletal Disease, University of Leeds and Work Fit Occupational Physiotherapy and Ergonomics Services Ltd

Background:
Estimates for work disability in AS vary widely, however the impact of AS on full labour force participation and occupational choice is widely acknowledged. Work Instability (WI), where there is an increasing mismatch between a person's functional ability and the demands of their job has not previously been explored in this population although a Work Instability Scale for Rheumatoid Arthritis (RA-WIS) is well established and is being used to enable physicians to identify patients at risk of job loss for rapid intervention.

Methods:
This study explored the concept of WI in AS through qualitative interviews (n=13). New items generated from the interviews were combined with relevant items from the existing RA-WIS to form a 55 item draft AS-WIS. Rasch analysis was used to examine the scaling properties of the AS-WIS using data generated through a postal survey. The new scale was validated against a gold standard of expert vocational assessment (n=13).

Results:
Fifty-seven participants who were in work returned the postal survey. Of the original 55 items 38 were shown to fit the Rasch model and to be free of bias for gender and disease duration. Following analysis for discrimination against the gold standard assessments 20 items remained with good fit to the Rasch model. For high levels of risk the sensitivity of the scale is 100% and specificity 82%. Ten items on the AS-WIS are common with items on the 23-item RA-WIS.

Conclusion
The AS-WIS is a self-administered scale which meets the stringent requirements of modern measurement, used as a screening tool it can identify those experiencing a mismatch at work who are at risk of work disability. Measurement of WI is emerging as an important indicator for the use of biologics, thus the AS-WIS has the potential to become an important outcome measure.

This study provides evidence that some aspects of WI are the same across different diagnostic groups, although there are also disease-specific aspects as well. As common items are identified in different Work Instability Scales these can be used to stablish an item bank giving comparability across disease.

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Biography for Dr Helen Keen, MBBS, FRACP

Helen trained as a Consultant Rheumatologist in Australia, largely Perth, Western Australia. She undertook a position as a Rheumatology Research in October 2004 in the Department of Musculoskeletal and Rehabilitation Medicine, Leeds University. To date the projects she has been involved in have largely been based around clinical and imaging outcomes of patients with inflammatory diseases on biological agents.

Prevention Of Work Instability In Ankylosing Spondylitis Ankylosing spondylitis (AS) is a chronic inflammatory disease of joints and entheses associated with a significant reduction in quality of life and is the prototypic disease of the spondyloarthropathy group of disorders. It has traditionally been considered a rare disease with few therapeutic options. AS is more common than previously estimated with some studies suggesting a prevalence as high as 1% (1). Clinical outcome with conventional therapies has not been good, with 70% of patients progressing to fusion of the spine by 10 to 15 years (2). There is no evidence that conventional therapy with non-steroidal anti-inflammatory drugs (NSAIDs) or disease modifying anti-rheumatic drugs (DMARDs) has any disease modifying effect and mortality is also increased, by 1.5 to 4 times the general population (3).
In contrast to rheumatoid arthritis (RA), the onset AS occurs in the third decade or even earlier. Importantly it affects individuals at a time when they are economically active (most commonly in the third decade) and the disease has a major impact on their ability to work (4). Work disability has been shown to be greater than in normal subjects. Overall, 20% of patients have lost their job due to AS, and 25% are in work but at risk of losing their job (4). Given that there may a need to be targeting of treatment, this smaller group may be a priority target for intervention, with the aim of job retention, with potential health economic benefits.

Certainly the intervention can be justified in terms of the health economic aspects of AS given the level of work disability associated with this disease. Recent evidence from a survey from our group shows that of the patients still in work, 50% have major health problems due to AS and suggest imminent job loss. Predictors of work disability are poor physical function and high disease activity.
All the above suggest that suppression of inflammation should lead to functional benefits translated which if translated into job retention would justify the use of expensive therapies on health economic grounds.

The advent of TNF-a blockade with etanercept marks the first therapeutic advance in AS since the introduction of NSAIDs and these drugs are rapidly effective in suppressing the entheseal lesions of inflammatory back disease and improvement in quality of life and functional status (5,6,7,8). This is likely to translate into enhanced ability to work. Our unit has developed a Work Instability Scale validated specifically for AS (AS-WIS), which can be used as an outcome measure. It is sensitive to the impact of inflammatory back disease on ability to work. The impact of anti-TNF therapies on Work Instability in AS is currently unknown, as no specifically validated measure has previously been available. The aim of this study is to determine whether anti-TNF therapy with etanercept does improve the work instability, and consequently in job retention, using validated measures.

Braun J, Bollow M, Remlinger G et al. The prevalence of spondyloarthropathy in HLA B 27 positive and negative blood donors. Arth Rheum 1998; 41: 58-67.

Brophy S, Mackay K, Al-Saidi A et al. The natural history of AS as defined by radiological progression. J Rheumatol 2002; 29 (6):1236-43.

Lehtinen K. Mortality and cause of death in 398 patients admitted to hospital with ankylosing spondylitis. Ann Rheum Dis 1993; 52: 174-76.

Barkham N, Emery P, Kong K et al. The Unmet need for biologic therapy in Ankylosing Spondylitis.Accepted in abstract form for ACR 2003.

Braun J, Brandt J, Listing J et al. Treatment of active ankylosing spondylitis with Infliximab: a randomised controlled multicentre trial. Lancet 2002; 359: 1187-93.

Marzo-Ortega H, McGonagle D, O’Connor P et al. Efficacy of etanercept in the treatment of entheseal pathology in resistant spondyloarthropathy. A clinical and magnetic resonance imaging study. Arthritis Rheum 2001: 44; 2112-2117.

Braun J, Baraliakos X, Golder W et al. Magnetic Resonance Imaging Examinations of the spine in patients with with Ankylosing Spondylitis, before and after successful therapy with infliximab. Arthritis Rheum 2003; 48: 1126-36.

Rudwaleit M Baraliakos X, Listing J, Brandt J, Sieper J, Braun J. magnetic resonance imaging f the spine and the sacroiliac joints in Ankylosing Spondylitis and undifferentiated spondyloarthropathies during treatment with etanercept. Ann Rheum Dis 2005;64:1305-1310.

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ASTRETCH CONFERENCE OCTOBER 2004

The inaugural conference of AStretch took place on October 5th 2004 at the Chartered Society of Physiotherapy (CSP). It had been inspired by the AStretch committee and subsequently organised by 3 of its members: Karen Irons (Secretary), Claire Jeffries (Membership and Course secretary) and Juliette O’Hea(Chairman) .

The event was sponsored by two pharmaceutical companies - Wyeth and Schering-Plough. Participants included 40 physiotherapists and nurses from all around the country who shared a keen interest and expertise in the management of Ankylosing Spondylitis (A.S). Fergus Rogers from the National Ankylosing Spondylitis Society (NASS) was also in attendance and he was able to provide valuable information about NASS.

The conference was opened by Juliette O’Hea, Chair of AStretch, who described the aims and achievements of AStretch and introduced the new AStretch website (www.astretch.co.uk).

This was followed by an overview of the use of Remicade by a senior Medical Affairs Project Manager from Schering-Plough.

Kirstie Haywood completed the morning with a review of a range of patient-assessed health instruments that could be used in the assessment of A.S. As co-director of the Patient-assessed Health Instruments Group
(http://phi.uhce.ox.ac.uk), National Centre for Health Outcomes

Development at the University of Oxford, she was able to give an unbiased overview of available tools available in the workplace Contact details: kirstie.haywood

During a buffet lunch, there was a demonstration of a new device for measuring neck rotation. It had been designed by an A.S patient and had been on trial at the Royal National Hospital for Rheumatic Diseases in Bath since April 2003. Please contact Peter Hamilton (01823 270074) or at hamilton2005@gmail.com for further information.

The lunch break also provided a perfect opportunity for networking. After lunch, we were delighted to listen to Dr. Andrew Keat from Northwick Park Hospital who gave a clear and entertaining overview of the BSR guidelines for Biologic medication in A.S. As a specialist in the Spondyloarthropathies and Chairman of the BSR working group on use of TNF Blockade Treatment in A.S, his insight and knowledge was invaluable.

The final two speakers of the day focused on psychological issues related to A.S. Professor Julie Barlow (an A.S sufferer herself) from Coventry University presented results from her research into the impact of A.S on working life from a psychosocial perspective (contact details: j.barlow@coventry.ac.uk).

This was followed by a presentation by Jane Martindale, a physiotherapist at the Wrightington Hospital in Manchester. She and her colleagues are undertaking a prospective study of A.S patients to establish any possible links between disease status and psychological status (contact details jane.martindale).

The conference had been very successful in bringing together practitioners from all around the country to listen to a very high standard of presentations on very relevant topics. AStretch hope to organise another conference in the Autumn.
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email: astretch@astretch.co.uk - web: http://www.astretch.co.uk

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