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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 Quality of life and economic impact of switching from established infliximab therapy to adalimumab in patients with rheumatoid arthritis. free! 2007
Walsh CA, Minnock P, Slattery C, Kennedy N, Pang F, Veale DJ, Bresnihan B, FitzGerald O. · Department of Rheumatology, St. Vincent's University Hospital, Elm Park, Dublin 4, Ireland. · Rheumatology (Oxford). · Pubmed #17478471 links to free full text
Abstract: OBJECTIVE: To evaluate the quality of life and economic impact of switching therapy from infliximab to adalimumab in patients with rheumatoid arthritis (RA). METHODS: In this open-label study, patients demonstrating a clinical response to infliximab were switched to treatment with adalimumab and followed for 16 weeks. Both generic (Health Assessment Questionnaire and Short Form 36 Physical Component Summary and Mental Component Summary) and specific (Rheumatoid Arthritis Quality of Life questionnaire) assessment instruments of physical function and of quality of life were employed. An economic analysis of treatment-related costs was also performed. Disease activity was assessed by the composite 28-joint count Disease Activity Score (DAS28). C-reactive protein (CRP) and erythrocyte sedimentation rate (ESR) were measured as acute phase markers. RESULTS: Nineteen patients were enrolled and completed the study. No changes in functional and quality-of-life measures were observed. One-year extrapolation data showed potential reductions in costs following switching to adalimumab that could be attributed primarily to reductions in patient- and staff-related costs. Safety and tolerability were similar for both treatments. Although there was a significant reduction in DAS28 (P < 0.005) and CRP (P < 0.001) after switching to adalimumab, there were no significant changes in individual DAS28 components, including swollen and tender joint counts and ESR. CONCLUSIONS: A switch from infliximab to adalimumab in patients with RA who have responded to infliximab is a feasible, well-tolerated treatment option, with the potential for direct and indirect economic advantages.
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Article Women, men, and rheumatoid arthritis: analyses of disease activity, disease characteristics, and treatments in the QUEST-RA study. free! 2009
Sokka T, Toloza S, Cutolo M, Kautiainen H, Makinen H, Gogus F, Skakic V, Badsha H, Peets T, Baranauskaite A, Géher P, Ujfalussy I, Skopouli FN, Mavrommati M, Alten R, Pohl C, Sibilia J, Stancati A, Salaffi F, Romanowski W, Zarowny-Wierzbinska D, Henrohn D, Bresnihan B, Minnock P, Knudsen LS, Jacobs JW, Calvo-Alen J, Lazovskis J, Pinheiro Gda R, Karateev D, Andersone D, Rexhepi S, Yazici Y, Pincus T, Anonymous00057. · Jyväskylä Central Hospital, Keskussairaalantie 19, 40620 Jyväskylä, and Medcare Oy, Hämeentie 1, 44100 Aänekoski, Finland. · Arthritis Res Ther. · Pubmed #19144159 links to free full text
Abstract: ABSTRACT : INTRODUCTION : Gender as a predictor of outcomes of rheumatoid arthritis (RA) has evoked considerable interest over the decades. Historically, there is no consensus whether RA is worse in females or males. Recent reports suggest that females are less likely than males to achieve remission. Therefore, we aimed to study possible associations of gender and disease activity, disease characteristics, and treatments of RA in a large multinational cross-sectional cohort of patients with RA called Quantitative Standard Monitoring of Patients with RA (QUEST-RA). METHODS : The cohort includes clinical and questionnaire data from patients who were seen in usual care, including 6,004 patients at 70 sites in 25 countries as of April 2008. Gender differences were analyzed for American College of Rheumatology Core Data Set measures of disease activity, DAS28 (disease activity score using 28 joint counts), fatigue, the presence of rheumatoid factor, nodules and erosions, and the current use of prednisone, methotrexate, and biologic agents. RESULTS : Women had poorer scores than men in all Core Data Set measures. The mean values for females and males were swollen joint count-28 (SJC28) of 4.5 versus 3.8, tender joint count-28 of 6.9 versus 5.4, erythrocyte sedimentation rate of 30 versus 26, Health Assessment Questionnaire of 1.1 versus 0.8, visual analog scales for physician global estimate of 3.0 versus 2.5, pain of 4.3 versus 3.6, patient global status of 4.2 versus 3.7, DAS28 of 4.3 versus 3.8, and fatigue of 4.6 versus 3.7 (P < 0.001). However, effect sizes were small-medium and smallest (0.13) for SJC28. Among patients who had no or minimal disease activity (0 to 1) on SJC28, women had statistically significantly higher mean values compared with men in all other disease activity measures (P < 0.001) and met DAS28 remission less often than men. Rheumatoid factor was equally prevalent among genders. Men had nodules more often than women. Women had erosions more often than men, but the statistical significance was marginal. Similar proportions of females and males were taking different therapies. CONCLUSIONS : In this large multinational cohort, RA disease activity measures appear to be worse in women than in men. However, most of the gender differences in RA disease activity may originate from the measures of disease activity rather than from RA disease activity itself.
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Article Incorporating the patient perspective into outcome assessment in rheumatoid arthritis--progress at OMERACT 7. 2005
Kirwan JR, Hewlett SE, Heiberg T, Hughes RA, Carr M, Hehir M, Kvien TK, Minnock P, Newman SP, Quest EM, Taal E, Wale J. · University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK. · J Rheumatol. · Pubmed #16265712 No free full text.
Abstract: The Patient Perspective Workshop at OMERACT 7 addressed the question of assessing the outcomes of intervention in rheumatoid arthritis (RA) from the perspective of those who experience the disease. A particular emphasis at this workshop was placed on fatigue, but other areas included well-being, real-time assessment, patient priorities, and needs in early and late disease. Through a series of overview presentations, discussion groups, and plenary sessions, workshop participants (who included 19 patients) clarified what is known and what are the outstanding issues for future research. The importance of further work on clarifying the validity of fatigue measurements in RA has been confirmed, and with at least one suitable instrument available there will be strong pressure to include fatigue in a redefined core set of outcome measures in RA. In the other 4 areas covered there are important issues that can be addressed by enquiry and experiment and that together provide a challenging research agenda. At the final plenary session the OMERACT conference endorsed, by a large majority, the proposal that fatigue may warrant consideration for inclusion in the OMERACT core set for RA.
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Article Progress since OMERACT 6 on including patient perspective in rheumatoid arthritis outcome assessment. 2005
Kirwan JR, Ahlmén M, de Wit M, Heiberg T, Hehir M, Hewlett S, Katz PP, Minnock P, Quest EM, Richards P. · University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK. · J Rheumatol. · Pubmed #16265711 No free full text.
Abstract: The first OMERACT Patient Perspective Workshop took place at OMERACT 6 in 2002. Through a series of meetings and discussion sessions a research agenda emerged and this report outlines progress made on this agenda. Work on identifying novel outcomes, instruments, and methods has shown similarities across European countries in the importance patients with rheumatoid arthritis (RA) attach to specific outcomes, in particular fatigue. Validation of an appropriate instrument to measure fatigue in patients with RA is currently being investigated. Frequent or repeated real-time assessment of symptoms such as pain and fatigue is becoming possible using electronic systems. An OMERACT Patient Panel has been established, and has produced a glossary for patients involved in supporting clinical research. In some centers, efforts are being made to provide Patient Research Partners with knowledge and skills that will enhance their contribution, and some of these approaches will be incorporated into OMERACT 7. The research agenda that was developed during the first Patient Perspective Workshop has stimulated new work in several areas. In addition, international attention has been drawn to the need to make sure that the patient's perspective is not lost among the technical expertise of rheumatology.
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Article Women with established rheumatoid arthritis perceive pain as the predominant impairment of health status. free! 2003
Minnock P, FitzGerald O, Bresnihan B. · Rheumatology Rehabilitation, Our Lady's Hospice, Harold's Cross, Dublin 6, Ireland. · Rheumatology (Oxford). · Pubmed #12730516 links to free full text
Abstract: OBJECTIVE: The aim of this study was to characterize perceptions of health and well-being in women with established rheumatoid arthritis (RA). METHODS: Women aged between 40 and 60 yr with RA for more than 3 yr, and who were receiving stable doses of anti-rheumatic drug therapy, were selected for study. The Arthritis Impact Measurement Scales 2 (AIMS2) was employed to quantify current health status impairments, the impairments that were attributed to RA, perceptions of current health status compared with other women of the same age, and perceptions of future health status. RESULTS: Fifty-eight patients were studied. The full range of 12 AIMS2 dimensions was used when quantifying impairments in health status. The dominant impairment was pain. Moreover, 88% of patients attributed current pain to RA. Fifty-two per cent perceived their health status to be fair, poor or very poor compared with other women of the same age. Twenty-five per cent expected poor future health status, compared with 10% who perceived poor current health status. Only one patient (2%) expected excellent future health status. CONCLUSION: In this study, a large majority of women perceived impairments of health status that they attributed to RA. Pain was perceived as the predominant impairment. Deterioration in health status was anticipated by many. The inclusion of patient perceptions of health status and disease impact as outcome measures in both cross-sectional and longitudinal clinical research protocols merits further study.
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Article Quality of life, social support, and knowledge of disease in women with rheumatoid arthritis. free! 2003
Minnock P, Fitzgerald O, Bresnihan B. · Rheumatology Rehabilitation, Our Lady's Hospice, Dublin, Ireland. · Arthritis Rheum. · Pubmed #12687514 links to free full text
Abstract: OBJECTIVE: To examine the relationships between the quality of life (QOL) of women with rheumatoid arthritis (RA) and 1). their perceived levels of social support and 2). their primary caregivers' knowledge of RA and its treatment. METHODS: Women aged 40-60 years with established RA completed validated questionnaires on health status (Arthritis Impact Measurement Scales 2) and satisfaction with the levels of social support from their primary caregiver (Significant Others Scale A). In addition, both the caregivers and patients independently completed questionnaires that were designed to elicit knowledge of RA and its treatment. RESULTS: Fifty-eight patients and their primary caregivers completed the questionnaires. Analysis of the patients' health status demonstrated widespread biopsychosocial impairments. Arthritis pain, identified as the poorest health status dimension, was associated with the lowest levels of satisfaction, and received the highest priority for health status improvement. In contrast, the patients reported highest levels of satisfaction with social support from family and friends. Positive associations between social support variables and a number of QOL measures were observed. Both the caregivers and the patients displayed limited knowledge of RA and its treatment. Associations between the levels of knowledge and the patients' QOL measures were not observed. CONCLUSION: In this study of women with RA and their caregivers, a limited knowledge of disease did not appear to impact QOL measures. However, failure to detect an association between knowledge of disease and QOL may have been influenced by a combination of the relatively small study numbers and insufficient variation in caregivers' knowledge, such that a floor effect existed.
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Minor Fatigue is related to poor pain outcomes in women with established rheumatoid arthritis. 2008
Minnock P, Bresnihan B. · No affiliation provided · Clin Exp Rheumatol. · Pubmed #18799112 No free full text.
This publication has no abstract.
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Minor Patient perspective: fatigue as a recommended patient centered outcome measure in rheumatoid arthritis. 2007
Kirwan JR, Minnock P, Adebajo A, Bresnihan B, Choy E, de Wit M, Hazes M, Richards P, Saag K, Suarez-Almazor M, Wells G, Hewlett S. · University of Bristol Academic Rheumatology Unit, and United Bristol Healthcare NHS Trust, Bristol, UK. · J Rheumatol. · Pubmed #17477482 No free full text.
Abstract: The Patient Perspective Workshop at OMERACT 8 considered evidence for the importance of fatigue to patients with rheumatoid arthritis (RA) and whether measurement of fatigue meets the requirements of the OMERACT filter. The workshop participants included 20 patients from 10 countries and 60 other OMERACT participants. Introductory papers and detailed notes for discussion group members set out the evidence from the literature and from recent analyses of clinical study data available to several participants. The workshop concluded that fatigue is a symptom that is important to patients, is commonly reported by patients, is often severe, can be measured by several current instruments that pass the OMERACT filter, is responsive to some interventions, and provides information additional to that commonly obtained from currently used outcomes. The final OMERACT plenary session endorsed by a very large majority (89%) the proposal that, in addition to the "core set" of outcome measures currently in widespread use, fatigue should be measured in future studies of RA whenever possible.
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