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Editorial Patient-reported outcomes for arthritis: time to focus on personal life impact measures? 2009
Sanderson T, Kirwan J. · No affiliation provided · Arthritis Rheum. · Pubmed #19116964 No free full text.
This publication has no abstract.
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Review Glucocorticoids: action and new therapeutic insights in rheumatoid arthritis. 2007
Kirwan J, Power L. · University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK. · Curr Opin Rheumatol. · Pubmed #17414948 No free full text.
Abstract: PURPOSE OF REVIEW: To summarize the mechanism of action of glucocorticoids, the direction that current research is taking and what this might mean for clinicians. RECENT FINDINGS: New cellular actions of glucocorticoids have been identified, and offer new drug targets. There is increasing competition to find a glucocorticoid formulation or analogue that enhances therapeutic effects while reducing adverse effects. Clinically, there is increasing evidence for the disease-modifying effects of glucocorticoids, which makes these developments topical and relevant. Better understanding of the pathology of rheumatoid arthritis and the circadian variation in symptoms that is a hallmark of the disease may also affect the way that we use these drugs. SUMMARY: Glucocorticoids are about to enter a renaissance based on better understanding of how they work and novel approaches to new therapeutic targets.
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Review MCID/Low Disease Activity State Workshop: summary, recommendations, and research agenda. 2003
Wells G, Anderson J, Boers M, Felson D, Heiberg T, Hewlett S, Johnson K, Kirwan J, Lassere M, Robinson V, Shea B, Simon L, Strand V, van Riel P, Tugwell P. · Department of Clinical Epidemiology and Community Medicine, University of Ottawa, Ottawa, Ontario, Canada. · J Rheumatol. · Pubmed #12734920 No free full text.
Abstract: The OMERACT 6 Minimal Clinically Important Difference/Low Disease Activity Workshop was organized with the aim of meeting the many challenges that exist in determining a low disease activity in rheumatoid arthritis (RA). This article presents an overview of that workshop, including results of the voting, a summary of associated discussions, recommendations, and a proposed research agenda.
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Review MCID/Low Disease Activity State Workshop: low disease activity state in rheumatoid arthritis. 2003
Wells G, Boers M, Shea B, Anderson J, Felson D, Johnson K, Kirwan J, Lassere M, Robinson V, Simon L, Strand V, van Riel P, Tugwell P. · Department of Clinical Epidemiology and Community Medicine, University of Ottawa, Ottawa, Canada. · J Rheumatol. · Pubmed #12734918 No free full text.
Abstract: The MCID (minimal clinically important difference) module of OMERACT 5 developed a research agenda that led to the conclusion that a state of low disease activity for rheumatoid arthritis (RA) would need to be defined. To develop such a definition the various concepts and terminologies, the process for developing an operational definition, and the availability and design of longitudinal datasets for validation needed to be considered. This article describes the process of the MCID/Low Disease Activity State Workshop at OMERACT 6 to develop such a definition.
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Review Outcomes from the Patient Perspective Workshop at OMERACT 6. 2003
Kirwan J, Heiberg T, Hewlett S, Hughes R, Kvien T, Ahlmèn M, Boers M, Minnock P, Saag K, Shea B, Suarez Almazor M, Taal E. · University of Bristol Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK. · J Rheumatol. · Pubmed #12672218 No free full text.
Abstract: The objective of the Patient Perspective Workshop at OMERACT 6 was to address the question of assessing the outcomes of intervention in rheumatoid arthritis (RA) from the perspective of those who experience the disease themselves. This was done by reviewing the current state of research in the area, identifying the requirements for the development of valid instruments, delineating a research agenda that can attain these requirements, and motivating participants to undertake the appropriate research. Through a series of meetings and discussion sessions a research agenda emerged that includes: exploring subjective experiences of RA identified by patients as important but not encompassed within the current "core set" of outcome measures (such as a sense of well being, fatigue, and disturbed sleep); clarifying terminology; and empowering patients to be more effective partners in outcomes research. These were supported by the OMERACT plenary session. Specific actions were required by both patient participants and organizers to ensure the nature of the conference, its focus and method of working were understood, and that the patient participants were sufficiently confident to make their contribution.
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Clinical Conference Patient initiated outpatient follow up in rheumatoid arthritis: six year randomised controlled trial. free! 2005
Hewlett S, Kirwan J, Pollock J, Mitchell K, Hehir M, Blair PS, Memel D, Perry MG. · University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol BS2 8HW. · BMJ. · Pubmed #15546895 links to free full text
Abstract: OBJECTIVES: To determine whether direct access to hospital review initiated by patients with rheumatoid arthritis would result in improved clinical and psychological outcome, reduced overall use of healthcare resources, and greater satisfaction with care than seen in patients receiving regular review initiated by a rheumatologist. DESIGN: Two year randomised controlled trial extended to six years. SETTING: Rheumatology outpatient department in teaching hospital. PARTICIPANTS: 209 consecutive patients with rheumatoid arthritis for over two years; 68 (65%) in the direct access group and 52 (50%) in the control group completed the study (P = 0.04). MAIN OUTCOME MEASURES: Clinical outcome: pain, disease activity, early morning stiffness, inflammatory indices, disability, grip strength, range of movement in joints, and bone erosion. Psychological status: anxiety, depression, helplessness, self efficacy, satisfaction, and confidence in the system. Number of visits to hospital physician and general practitioner for arthritis. RESULTS: Participants were well matched at baseline. After six years there was only one significant difference between the two groups for the 14 clinical outcomes measured (deterioration in range of movement in elbow was less in direct access patients). There were no significant differences between groups for median change in psychological status. Satisfaction and confidence in the system were significantly higher in the direct access group at two, four, and six years: confidence 9.8 v 8.4, 9.4 v 8.0, 8.7 v 6.9; satisfaction 9.3 v 8.3, 9.3 v 7.7, 8.9 v 7.1 (all P < 0.02). Patients in the direct access group had 38% fewer hospital appointments (median 8 v 13, P < 0.0001). CONCLUSIONS: Over six years, patients with rheumatoid arthritis who initiated their reviews through direct access were clinically and psychologically at least as well as patients having traditional reviews initiated by a physician. They requested fewer appointments, found direct access more acceptable, and had more than a third fewer medical appointments. This radical responsive management could be tested in other chronic diseases.
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Clinical Conference The relationship between soft tissue swelling, joint space narrowing and erosive damage in hand X-rays of patients with rheumatoid arthritis. free! 2001
Kirwan J, Byron M, Watt I. · Rheumatology Unit, University of Bristol Division of Medicine, Bristol, UK. · Rheumatology (Oxford). · Pubmed #11285377 links to free full text
Abstract: OBJECTIVES: To test the hypotheses that the progression of joint space narrowing behaves differently from the progression of erosions and that clinically and radiologically assessed soft tissue swelling relates more to diffuse cartilage loss than to erosive damage. METHODS: Radiographs and clinical data were obtained from 28 patients in a prospective, multicentre, randomized, placebo-controlled trial of prednisolone 7.5 mg daily over 2 yr. Radiographic scoring included the Larsen score, joint space narrowing and soft tissue swelling. Clinical joint inflammation in the hands was assessed every 3 months and cumulative synovitis score over the period of study was then calculated for each joint. The placebo-treated patients and the prednisolone-treated patients were analysed separately. The Larsen scores were compared after log transformation [transformed score=log(10) (original score+1)]. Changes in Larsen scores and joint space narrowing scores were compared with the cumulative presence of clinical synovitis and radiological soft tissue swelling using the correlation coefficient. RESULTS: There was a difference in the rate of progression in the Larsen score between placebo- and prednisolone-treated patients, but there was no significant difference in the rate of joint space loss. In placebo-treated patients, measures of synovitis correlated more strongly with progression of joint space narrowing than with changes in the Larsen score. In prednisolone-treated patients there was no correlation between clinical synovitis and change in Larsen score (r=0.029) and only a slight and non-significant correlation with joint space narrowing (r=0.127). Radiographic evidence of soft tissue swelling remained correlated with joint space narrowing (r=0.279, P:<0.001) but was not correlated with change in Larsen score (r=-0.113, P:<0.001 for difference between correlations). The correlation between Larsen score progression and joint space narrowing seen in the non-treated patients was completely abolished in the glucocorticoid-treated group (r=-0.003). CONCLUSIONS: The progression of joint space narrowing behaves differently from the progression of erosions. Prednisolone slows (or even stops) the progression of erosions (as assessed by the Larsen score) while making no difference to the progression of cartilage loss (as assessed by joint space narrowing). The results also suggest that synovitis, whether measured clinically or radiologically, is more closely related to diffuse cartilage loss than to erosion progression. Any link between synovitis and erosions is abolished by glucocorticoid therapy while the link between synovitis and cartilage loss is not, pointing to at least two different mechanisms for these observed radiological features.
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Article Sensitivity to change of the Rheumatoid Arthritis Self-Efficacy scale (RASE) and predictors of change in self-efficacy. 2008
Hewlett S, Cockshott Z, Almeida C, Richards P, Lowe R, Greenwood R, Kirwan J, Anonymous00057. · School of Nursing, University of the West of England, Bristol UK. · Musculoskeletal Care. · Pubmed #18228530 No free full text.
Abstract: OBJECTIVES: Patient education in rheumatoid arthritis (RA) aims to improve health outcomes by prompting people to adopt self-management behaviours. One precursor for initiating behaviour change is self-efficacy (SE), a belief that you can do a task. This study tested the sensitivity to change of a new scale to measure SE for self-management in people with RA, the Rheumatoid Arthritis Self-Efficacy scale (RASE). Exploratory analysis examined potential predictors of change in SE. METHODS: People with RA at 11 rheumatology centres, who had accepted an education programme as part of clinical care, completed questionnaires at baseline, and two and eight weeks after their programme end. Programmes were not standardized, as this was a pragmatic study in clinical practice. RESULTS: A total of 128 patients participated. After controlling for baseline scores, the RASE showed small but significant improvements in SE from baseline (RASE 107.57, CI 105.42-109.72) to two weeks after programme end (RASE 110.80, CI 108.60-112.99), and eight weeks (RASE 110.62, CI 108.40-112.85, p<0.001). Standardized response means, calculated both by absolute and percentage change, were 0.339 and 0.371 at two weeks after programme end, and 0.321 and 0.352 at eight weeks. Changes in the RASE were associated with behaviour initiation at two and eight weeks (r=0.419, r=0.342, p<0.001). No substantial predictors of change in SE could be identified. CONCLUSIONS: The RASE is sensitive to change in a cohort of people with RA in the UK receiving education programmes as routine clinical care. Exploratory analysis did not identify clinical or psychological factors that predict change in SE, suggesting that programmes should not be restricted to particular patients.
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Article Outcomes generated by patients with rheumatoid arthritis: how important are they? 2005
Hewlett S, Carr M, Ryan S, Kirwan J, Richards P, Carr A, Hughes R. · Academic Rheumatology Unit, University of Bristol. · Musculoskeletal Care. · Pubmed #17042002 No free full text.
Abstract: BACKGROUND: It has been shown previously that patients with rheumatoid arthritis (RA) can generate a wide range of outcomes that they consider important in treatment. It is not known if these outcomes are generally important in the wider RA patient community. OBJECTIVES: (1) To examine whether recent patient-generated outcomes are generalizable within a wider RA population; (2) to assess the relative importance of each outcome; and(3) to explore whether any important outcomes have been omitted. METHODS: A questionnaire, listing 23 outcomes previously generated by RA patients, was distributed through three rheumatology centres in the UK. Patients gave an importance score to each outcome (0-3), selected their top three most important outcomes, and then listed any outcomes of personal importance that were missing. RESULTS: 323 questionnaires were returned (65%). All outcomes were deemed important. Independence, pain, and mobility were most frequently selected by patients in their top three outcomes but were not chosen by 61-66% of patients. The next most commonly chosen outcomes related to feeling well and fatigue. Factor analysis revealed six reasonably distinct groupings: general well-being (11.9% explained variance), day-to-day functioning(10.6%), emotional and psychological well-being (10.6%), social role and confidence (10%), physical symptoms (9.5%) and medication issues (7.9%). CONCLUSION: Outcomes generated by patients as important in RA, are generalizable and inclusive. The most important (independence, pain and mobility) are routinely treated and measured. The next most important (feeling well, fatigue) are infrequently addressed and deserve urgent consideration for measurement, treatment and research.
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Article Early rheumatoid arthritis: combination therapy with disease-modifying antirheumatic drugs and low-dose glucocorticoids? 2006
Kirwan J. · Rheumatic Diseases at the University of Bristol, Bristol, UK. · Nat Clin Pract Rheumatol. · Pubmed #16932680 No free full text.
This publication has no abstract.
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Article Implementing a patient-led service for chronic conditions. 2005
Pope D, Tipler S, Kirwan J, Hewlett S. · Rheumatology Centre, Bristol Royal Infirmary. · Nurs Times. · Pubmed #16372731 No free full text.
Abstract: Many chronic conditions with fluctuating levels of disease activity are traditionally managed by lifelong regular medical reviews. However, this means appointments do not always coincide with patient need, while the volume of reviews makes it difficult to respond quickly to requests for help. Research in rheumatoid arthritis suggests that hospital-initiated reviews can be replaced by patient-initiated reviews, supported by nurse-led initiatives.
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Article Welfare rights services for people disabled with arthritis integrated in primary care and hospital settings: set-up costs and monetary benefits. free! 2004
Powell JE, Langley C, Kirwan J, Gubbay D, Memel D, Pollock J, Means R, Hewlett S. · Faculty of Health and Social Care, University of the West of England, Bristol, Glenside Campus, Blackberry Hill, Stapleton, Bristol BS16 1DD, UK. · Rheumatology (Oxford). · Pubmed #15213334 links to free full text
Abstract: OBJECTIVE: To quantify the set-up costs and monetary benefits of a welfare rights service integrated within an NHS service provider, that selects eligible patients using the Health Assessment Questionnaire (HAQ) and offers welfare rights advice to assist in application for Disability Living Allowance and Attendance Allowance. METHOD: (1) Design: a cost evaluation of a social intervention, screening with the HAQ and welfare rights advice in primary care and hospital settings. (2) Setting: Eight general practices and four hospital rheumatology out-patient departments were selected from four localities in the southwest of England. (3) Participants: Two hundred and sixty-eight eligible patients with arthritis accepted an interview with a welfare rights officer (WRO) from a sample of 1989 service users identified from GPs' records and hospital out-patient lists. Two hundred and forty two service users expressed an interest in take up of the social intervention. (4) Service users with a HAQ score >/=1.5 were contacted by telephone and offered an appointment with an experienced WRO to help them complete a welfare benefit application form. A 'micro-costing' study was undertaken with assessment of monetary benefits received. RESULTS: The indicative set-up costs of similar welfare rights services are pound 8125 in a GP setting and pound 9307 per annum in a hospital setting at 2002 prices. Total annual unclaimed Disability Living Allowance/Attendance Allowance granted to successful claimants was pound 184,382 in the GP setting (n = 84 from 137) and pound 169,309 in the hospital setting (n = 79 from 131). CONCLUSIONS: Welfare rights advice received during a visit to a GP practice or a hospital out-patient department can substantially reduce the level of unclaimed benefit in arthritic populations including the elderly; with mobility and care difficulties. A welfare rights service integrated within a GP practice or hospital that screens people with arthritis using HAQ scores and encourages those with scores >/=1.5 to see a WRO for help with welfare benefit confers monetary benefits for service users that substantially outweigh set-up costs.
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Article Rheumatology outcomes: the patient's perspective. 2003
Carr A, Hewlett S, Hughes R, Mitchell H, Ryan S, Carr M, Kirwan J. · Academic Rheumatology, University of Nottingham, Nottingham, UK. · J Rheumatol. · Pubmed #12672221 No free full text.
Abstract: Our aim was to explore the patient's perspective of outcomes in rheumatoid arthritis (RA) to identify which outcomes are important to patients and how patients calibrate what constitutes a meaningful change in those outcomes. A qualitative study was performed using focus groups in 5 clinical centers in different geographical locations in the UK. Each group contained 6 to 9 patients with RA who were purposefully sampled to include men and women with a range of age, disease duration, functional disability, work disability, and current disease activity. Each focus group lasted around 1 h and addressed 3 questions: What outcomes from treatment are important to RA patients? What makes patients satisfied or dissatisfied with a treatment? How do patients decide that a treatment is working? Patients identified as important not only physical outcomes such as pain and disability, but also fatigue and a general feeling of wellness. The relative importance of these outcomes depended on the stage of disease and on specific situations, such as a disease flare. Satisfaction was influenced by communication, access to treatment, and treatment efficacy. Treatment efficacy was related to symptom reduction, with the magnitude of reduction necessary for efficacy dependent on the stage of disease. For example, large changes were deemed necessary with disease of long duration, while in early disease, even small changes could be important. Our data support existing knowledge of the importance of pain and mobility as treatment outcomes, but raise new and important issues: Some outcomes of importance to patients are not currently measured and there are no measures available to capture them. Existing measures need to be calibrated to take account of the differing importance of outcomes at different stages of disease and variations in the magnitude of change within the same outcome that indicate treatment efficacy.
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Article Development and validation of a self-efficacy scale for use in British patients with rheumatoid arthritis (RASE). free! 2001
Hewlett S, Cockshott Z, Kirwan J, Barrett J, Stamp J, Haslock I. · Rheumatology Unit, University of Bristol Division of Medicine, Bristol Royal Infirmary, Bristol, UK. · Rheumatology (Oxford). · Pubmed #11709605 links to free full text
Abstract: OBJECTIVE: Current arthritis self-efficacy scales have attracted some criticism. Therefore, the aim of this study was to develop and validate a measure of self-efficacy for use in British rheumatoid arthritis patients [Rheumatoid Arthritis Self-efficacy (RASE) scale]. METHODS: Phase I: item generation of self-management strategies by rheumatology professionals and patients to create a pilot RASE. Phase II: examination of the internal structure (n=88) using correlation coefficients and principal component analysis (PCA) to create the final RASE. Phase III: reliability in 23 patients. Phase IV: comprehension, construct validity and sensitivity to change in 48 rheumatoid arthritis patients undergoing a self-management programme, using correlation coefficients, PCA and inter-item correlation. RESULTS: Phase I: of 166 self-management items generated, 100 commonly cited items were selected for the pilot RASE. Phase II: using a correlation matrix and PCA, a 28-item RASE was created. Phase III: good 4-week reliability was seen (r=0.889, P<0.001). Phase IV: the final RASE was shown to be independent of mood, disease status and disability and weakly associated with other self-efficacy scales (r=0.313, P<0.05). The RASE was sensitive to change following an education programme (+5.167, P<0.025), and was associated with behaviour initiation (r=0.35, P<0.01). CONCLUSIONS: Careful construction means that the RASE examines beliefs in potential ability to perform tasks, rather than actual ability, performance or outcome expectancy. It shows good face validity and reliability, plus reasonable construct validity and sensitivity. Further studies are needed to support the validation of this new scale.
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Article Minimal clinically important difference in plain films in RA: group discussions, conclusions, and recommendations. OMERACT Imaging Task Force. 2001
van der Heijde D, Lassere M, Edmonds J, Kirwan J, Strand V, Boers M. · Department of Internal Medicine, University Hospital Maastricht, The Netherlands. · J Rheumatol. · Pubmed #11327276 No free full text.
Abstract: Analysis of progression of structural damage on an individual patient level in randomized controlled trials provides extra information in addition to the analysis on a group level. A cutoff level is required to define which patients show progression and which patients do not. The objective of the mimimal clinically important difference (MCID) module for plain films was to elaborate the various concepts to determine a MCID for plain films, and if possible, to define a MCID for specific scoring methods. The module comprised preconference reading material, a plenary session, small group discussions, and a plenary report of the group sessions, combined with interactive voting. The following conclusions and recommendations were made: the smallest detectable difference (SDD) beyond measurement error is a good starting point to define MCID; SDD is study-specific; SDD should be reported for all radiographic endpoints used in a trial as a quality control; the expert panel approach is a reasonable method to define MCID, but defined in this way MCID may be smaller than current SDD; more research is needed to validate expert panel based MCID in different datasets and with different experts; a predictive, data driven MCID is the ultimate goal, but is not yet available; the SDD can be used as a proxy for MCID until a data driven MCID is available; analysis at the group level (comparison of means or medians) should remain primary in studies that include progression of joint damage as outcome measure; the proportion of patients showing more progression than the SDD is a secondary outcome measure.
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Article Imaging in rheumatoid arthritis: results of group discussions. 1999
Molenaar ET, Boers M, van der Heijde DM, Alarcón G, Bresnihan B, Cardiel M, Edmonds J, Felson D, Furst DE, Kirwan J, Lassere M, Paulus H, Rau R, van Riel PL, Scott D, Simon L, Strand V. · Department of Rheumatology, VU University Hospital, Amsterdam, The Netherlands. · J Rheumatol. · Pubmed #10090196 No free full text.
Abstract: None of the current scoring methods for radiological damage in rheumatoid arthritis (RA) is ideal. The objective for RA imaging at OMERACT IV was to start discussion about the problems and applicability of the current scoring methods for radiological damage and to start discussion on the challenge of new imaging techniques. The RA imaging module comprised preconference reading material, plenary sessions, small group discussions, and a plenary report of the group sessions, combined with interactive voting. The OMERACT filter guided the discussions. Priorities for further research in imaging studies were: (1) pathologies versus features on radiographs; (2) relation with longterm outcome; and (3) definition of minimum clinically important difference.
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Minor Measures of rheumatoid arthritis disease activity. 2009
Kirwan J. · No affiliation provided · J Rheumatol. · Pubmed #19208571 No free full text.
This publication has no abstract.
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Minor Low dose prednisolone for treatment of RA. free! 2004
Kirwan J, Boers M. · No affiliation provided · Ann Rheum Dis. · Pubmed #15479919 links to free full text
This publication has no abstract.
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