1Centre for Rheumatology Research, University College London,. London, 2Health Services Research, City University London, London,. 3Peninsula Medical ...
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HEALTH SERVICES RESEARCH, ECONOMICS AND OUTCOMES RESEARCH
46. PATIENT CERTAINTY QUESTIONNAIRE: DEVELOPMENT AND VALIDATION OF A NEW OUTCOME MEASURE FOR PATIENTS WITH SYSTEMIC LUPUS ERYTHEMATOSUS AND RHEUMATOID ARTHRITIS Sophie Cleanthous1, Stanton P. Newman2, David A. Isenberg1 and Stefan J. Cano3 1 Centre for Rheumatology Research, University College London, London, 2Health Services Research, City University London, London, 3 Peninsula Medical School, University of Plymouth, London, UK Background: The importance of considering the patient perspective is increasingly being recognized across many disciplines including rheumatology, particularly as patient outcomes such as physical symptoms and health-related quality of life (HRQoL) are not always associated with clinical markers of disease in conditions such as SLE and RA. This has also led to the increased use of patient-reported outcome measures which are the most common tool used to quantify latent variables from the patient’s perspective. This study presents the development and validation of a new questionnaire which quantifies patient uncertainty in patients with SLE and RA. The importance of patient uncertainty in these two conditions was previously explored qualitatively and presented at the 2011 BSR Conference. Methods: A three-stage investigation was carried out to develop and validate the patient certainty questionnaire (PCQ). Cognitive debriefing interviews were conducted to assess the acceptability, relevance and difficulty of the PCQ items generated on the basis of patient interviews. Subsequently, two consecutive postal surveys were set up to field test the PCQ using the modern psychometric paradigm of Rasch Measurement Theory (RMT). The PCQ was further evaluated against traditional psychometric criteria. Results: A total of 20, 388 and 279 patients with SLE and RA were recruited for each of the three stages respectively. The PCQ comprises five scales; symptoms and flares (14 items), medication (11 items), trust in doctor (8 items), self-management (6 items) and impact (10 items). Scale items are scored on a 4-point response scale ranging from very uncertain to very certain. Total scores are generated by summing items in each of the five scales with higher scores indicating greater certainty (lower uncertainty). All five of the PCQ scales satisfied the stringent criteria of RMT displaying satisfactory measurement properties as well as traditional psychometric criteria, displaying excellent targeting, reliability (Cronbach’s alpha values ranging 0.82– 0.93), validity and scaling assumptions. Conclusion: The PCQ constitutes a psychometrically sound questionnaire that can be used for the quantification of patient uncertainty in SLE and RA. It was developed using rigorous methodology quantifying the five domains of patient uncertainty experienced in these two patient groups and can be used in research aiming to capture this cognition and its potential role in patient outcomes. Disclosure statement: The authors have declared no conflicts of interest. 47. SPECIALIST COMMISSIONING: DOES TREATMENT BY EXPERTS INFLUENCE OUTCOMES FOR PATIENTS WITH RARE DISEASES? AN EXEMPLAR FROM MYOSITIS Charlotte A. Sharp1, Sarah Tansley2, Paul New3, Richard Emsley4, Robert G. Cooper5, Neil McHugh2, Lisa Christopher-Stine6, Neil Snowden7 and Hector Chinoy8 1 Department of Rheumatology, University Hospitals of South Manchester NHS Foundation Trust, Manchester, 2Department of Rheumatology, Royal National Hospital for Rheumatic Diseases NHS Foundation Trust, Bath, 3Department of Rheumatology, Salford Royal Foundation Trust, Salford, 4Centre for Biostatistics, The University of Manchester, Manchester, 5MRC/ARUK Institute of Ageing and Chronic Disease, Faculty of Health & Life Sciences, University of Liverpool, Liverpool, UK, 6Myositis Center, Johns Hopkins University Rheumatology Faculty, Baltimore, MD, USA, 7 Department of Rheumatology, Pennine MSK Partnership Ltd, Oldham, 8Centre for Musculoskeletal Research, The University of Manchester, Manchester, UK Background: Following the Health and Social Care Act 2012, 10% of the NHS budget has been directly allocated to fund specialized
services for rare diseases. This work aims to tackle the challenge of measuring outcomes of treatment for rare diseases. Methods: A literature search failed to identify any existing outcomebased comparisons of different levels of care for myositis in the UK. A survey using clinical scenarios was distributed to UK Consultant Rheumatologists via the BSR, Royal College and regional mailing lists, who were asked to state whether they were expert or non-expert in caring for patients with myositis. UKMYONET has collected data on 1008 consented patients with a diagnosis of myositis in UK centres since 2000. Clinicians caring for patients on the database were classified as expert by HC and matched with deaths and cancer diagnoses flagged by the Office for National Statistics. Results: Of 52 survey respondents, 19 classified themselves as expert and 33 as non-expert. There were significant positive correlations between expert status and those working in tertiary care (P ¼ 0.014), who see >10 myositis patients/year (P ¼ 0.006), who have treated >75 myositis patients in their career (P ¼ 0.035) and International Myositis Assessment and Clinical Studies group membership status (P ¼ 0.004). Subsequently we looked for a relationship between treatments given by experts and non-experts. There was a high level of agreement (85%, kappa value 0.65) for the most popular top three treatments, with complete agreement in 3/7 scenarios. Non-experts chose a wider range of first-line treatments for each clinical scenario (mean 10.8 vs 6.14, P ¼ 0.0024), including more expensive (rituximab, immunoglobulin) and more toxic (cyclophosphamide) drugs. 6.1% of patients died during the UKMYONET collection period, with 7.4% having been cared for by experts and 4.1% by non-experts (P ¼ 0.036, OR 1.87). There was a non-significant increased risk of cancer in patients cared for by experts (OR 1.51, P ¼ 0.061). Patients with cancer cared for by experts were more likely to die (OR 2.18, P ¼ 0.183), but this was not statistically significant. Conclusion: The high level of agreement between experts and nonexperts for first line treatments is reassuring. Of more concern is the increased patient exposure to more toxic and expensive treatments when treated by non-experts. The UKMYONET database results suggest a higher death rate in patients cared for by experts. The slightly higher cancer rate in this group suggests that these patients may have had more severe disease. Patients referred to tertiary centres might be expected to be more complex, but further information regarding disease severity and other confounding variables was unavailable. In order for commissioners of specialized services for rare diseases to be satisfied that they are choosing the best provider, we all need to provide more robust evidence of outcomes for these patients. Disclosure statement: The authors have declared no conflicts of interest. 48. RHEUMATOLOGY OUT-PATIENT SERVICES OVER THE PAST TWO DECADES IN BRISTOL Cecilia Mercieca1, Nicola Minaur2 and John Kirwan1 1 Academic Rheumatology Unit, University Hospitals Bristol, Bristol, 2 Department of Rheumatology, North Bristol NHS Trust, Bristol, UK Background: Accurate information about local referral patterns, case mix, treatment needs and capacity of current services is key to improve and develop rheumatology services particularly in the current commissioning landscape. Methods: A survey of all out-patient visits during November 2012 at the 2 trusts in Bristol (catchment population 900,000) collecting data on case mix, waiting times and clinic visit outcomes. These were compared with previous surveys carried out in 1994 and 2000 as part of a regional audit. Results: Of the 243 new referrals (113 centre A, 130 centre B), 42.4% were diagnosed with inflammatory arthritis, 9.9% with OA, 11.1% with soft tissue conditions; 4.9% with back problems; 2.5% with PMR; 4.5% with other arthritis; 16.5% with other diseases and 8.2% with osteoporosis. Compared with 1994 there was a 24% increase in new patients, mainly inflammatory arthritis and osteoporosis with a reduction in OA and soft tissue conditions. Of the 1146 follow-ups (478 centre A, 668 centre B) 136 patients (11.8%) were seen by allied health professionals and 83.8% had inflammatory arthritis. Compared with 1994 there was a 58.7% increase in follow-up patients almost entirely due to inflammatory arthritis. Compared with previous surveys there has been a significant drop in waiting times for new referrals. Over 95% of new referrals were seen within 18 weeks. The overall follow-up to new ratio was 4:1. The follow-up to new ratio for RA was 21:1, for seronegative arthritis and CTDs 5:1 and for non-inflammatory arthritis 1:1. Following the clinic visit, 30% of new referrals and 5% of follow-ups were discharged while 15% were given open appointments. Interesting differences in follow-up trends were observed. At the centre operating the traditional appointments model the majority of follow-up appointments were booked at 26 and 52 weeks. At the centre running the direct access, follow-up appointments peaked at 12 and 26 weeks, while the remaining patients were followed up on the direct access system.
