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ABSTRACT: OBJECTIVE: The Disease Activity Score in 28 joints (DAS28) is a key measure in clinical practice and clinical trials. There are at least five different versions of the 'Patient Global' Visual Analogue Scale (PG-VAS) being used in the DAS28. The developers suggested that the PG-VAS can be an assessment of global health or disease activity, but did not specify the wording of the question. There is no consensus on what the PG-VAS is intended to capture, and the different words and phrases have not been evaluated. The aim of this study was to test if phrasing affects PG-VAS scores and hence yields different results for the DAS28. METHODS: Fifty patients with rheumatoid arthritis taking biologic agents in a rheumatology outpatient department completed a self-administered questionnaire containing five versions of the 100 mm PG-VAS. RESULTS: All PG-VAS versions correlated strongly with each other (rho = 0.67-0.87, p < 0.0001). However, individual scores for each PG-VAS, when compared with the comparator on a Bland-Altman chart had wide limits of agreement-the largest being -42 mm to +45 mm. The five overall DAS28 scores were calculated for each patient using the five different PG-VAS. The largest difference in DAS28 scores was 0.63. CONCLUSION: Different phrasing of the PG-VAS gives different DAS28 results. As the DAS28 is a key outcome measure, such differences have the potential to influence clinical decisions relating to eligibility for biologic agents and evaluation of new therapies. We urgently need to decide on the concept to be measured and the phrasing required to capture this. The PG-VAS phrasing should then be standardized and validated. Copyright © 2013 John Wiley & Sons, Ltd. Copyright © 2013 John Wiley & Sons, Ltd.
Musculoskeletal Care 02/2013;
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Susan J Bartlett,
Sarah Hewlett,
Clifton O Bingham,
Thasia G Woodworth,
Rieke Alten,
Christoph Pohl,
Ernest H Choy, Tessa Sanderson,
Annelies Boonen,
Vivian Bykerk,
Amye L Leong,
Vibeke Strand,
Daniel E Furst,
Robin Christensen
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ABSTRACT: OBJECTIVE: For rheumatoid arthritis (RA), there is no consensus on how to define and assess flare. Variability in flare definitions impairs understanding of findings across studies and limits ability to pool results. The OMERACT RA Flare Group sought to identify domains to define RA flares from patient and healthcare professional (HCP) perspectives. METHODS: Flare was described as a worsening of disease activity of sufficient intensity and duration to consider a change in therapy. International patients and HCPs participated in separate and combined rounds of Delphi exercises to rate candidate flare domains previously generated in patient focus groups. Core domains were defined as those with ≥70% ratings of being 'essential' according to the third/final Delphi exercise. RESULTS: The final Delphi included 125 RA patients from 10 countries and 108 HCPs from 23 countries who rated 14 domains. Patients had a mean (±SD) age of 56±12 years and disease duration of 18±12 years. HCPs included physicians from clinical practice/research and industry, allied health providers and researchers with 17±11 years experience. Core domains comprised: pain (93%), function (89%), swollen joints (84%), tender joints (81%), participation (81%), stiffness (79%), patient global assessment (76%) and self-management (75%). Fatigue (68%), which did not reach group consensus, will receive additional consideration. CONCLUSIONS: As part of the process to develop a measure for RA flare, patients and HCPs agreed on eight core domains. Next steps include identifying items to assess domains and conducting studies to validate and refine a new measure.
Annals of the rheumatic diseases 07/2012; 71(11):1855-1860. · 8.11 Impact Factor
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ABSTRACT: The nominal group technique generates quantitative data through a process of experts ranking items of interest. This article focuses on the additional collection of qualitative data from nominal groups with rheumatoid arthritis (RA) patients, used to explore the influences on prioritizing treatment outcomes. Across all groups, the top five outcomes with the highest importance scores were identified as: pain; joint damage; fatigue; activities of daily living; and mobility. Qualitative findings showed that the personal impact of RA influenced decisions on how to rank specific outcomes through four domains: disease impact; adaptation to illness; external resources and stressors; and social expectations.
Journal of Health Psychology 06/2011; 17(1):132-42. · 1.22 Impact Factor
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ABSTRACT: People with RA have episodes of worsening disease activity (flares) that prompt them to seek clinical review or medication change. This study explored patients' perspectives of flare that prompts them to seek medication review.
Fourteen focus groups across five countries comprised 67 RA patients. Transcripts were analysed by several researchers and a patient, using inductive thematic analysis.
Patients use flare for five different scenarios, including flare that prompts medical help-seeking, where six themes were identified. In 'Symptoms and early warnings', pain is intense (wanting to die), constant and persistent and considered a key feature. Systemic features predominate, including fatigue, feeling generally ill (flu-like), physical and cognitive shut-down and social withdrawal. Warning signs (prodrome) comprise fatigue and flu-like symptoms. 'Self-management of intensifying symptoms' includes pacing, heat/cold, rest and increasing medication, often without medical advice. Patients 'Define this as uncontrollable flare' when clusters of unprovoked, persistent symptoms halt their ability to run daily life, until prompted into 'Seeking help when symptoms can't be contained'. Underpinning themes are 'Individual context' (e.g. different symptom clusters) and 'Uncertainty' (e.g. when to seek help). Patients report that the current patient global visual analogue scale (VAS) does not capture flare.
Patients use flare for multiple events and seek help for complex clusterings of intense, unprovoked symptoms that defy self-management, not necessarily captured in joint counts or global VAS. Flare terminology and definition have implications for clinical practice and trials, therefore further research should establish a professional/patient consensus.
Rheumatology (Oxford, England) 05/2011; 51(1):69-76. · 4.24 Impact Factor
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ABSTRACT: Biographical disruption and related concepts have been widely applied in chronic illness. Different conceptualisations of normalisation have also been proposed in order to explain individuals' diverse responses to illness on their biography, but as yet, not clearly related to changing bodily experience or normalisation of symptoms. This article aims to examine the relevance of these concepts in rheumatoid arthritis (RA), an unpredictable autoinflammatory disease characterised by painful and swollen joints, disability, fatigue and joint damage. Interviews were conducted with 23 people living with RA, and analysed using Framework, to enable people's whole narratives and context to be considered. Six typologies of normality emerged from the data: disrupted; struggling to maintain; fluctuating; resetting; returning; and continuing normality. Multiple normalities were often present in individuals' narratives, with one normality typology usually dominating at the time of the interview. The typologies connect to several biographical concepts, and instances of 'biographical reinstatement' were also found, where participants described returning to normal life, through perceived effective medication rather than reconceptualisation of health. The concept of 'shifting normalities' is proposed, providing a dynamic explanatory model of chronic illness that captures the interaction of changing conceptions of a normal life and the normalisation of symptoms.
Sociology of Health & Illness 02/2011; 33(4):618-33. · 1.88 Impact Factor
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Arthritis & Rheumatism 01/2009; 61(1):1-3. · 7.87 Impact Factor
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ABSTRACT: To explore rheumatoid arthritis (RA) patients' experience of access to anti-tumour necrosis factor (anti-TNF) therapy in the UK, and of switching therapies after an initial failure.
Patients were asked about their experience of accessing, receiving and discontinuing anti-TNF therapy in face-to-face indepth interviews, within the context of the larger study about treatment outcomes. Seventeen individuals with a diagnosis of RA and experience of receiving anti-TNF therapy were interviewed in one hospital trust in England.
Different emotions (Theme 1) surrounded the process of accessing anti-TNF therapy: hope, desperation, apprehension, anxiety and frustration. Experience of receiving anti-TNF therapy (Theme 2) included not only positive transformation, but also fear of failure and discontinuation. The subsequent value that patients placed on anti-TNF therapy (Theme 3) included having a right to receive therapy and being lucky. These three themes were underpinned by the core category of 'willing to try anything'. Those switching therapies reported increased caution over the possibility of recurring side effects, but some suggestion of benefit. There was a perception that access to anti-TNF therapy was restricted by cost, rather than being recommended for those in clinical need.
Anti-TNF therapies may have a sudden and dramatic impact on RA patients' lives that contrast with other available medications. However, the stress of the patient's journey through the need to 'qualify' for anti-TNF therapy, and the fear of failing or discontinuation of therapy, should not be underestimated by clinicians.
Musculoskeletal Care 01/2009; 7(3):194-209.
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ABSTRACT: In rheumatoid arthritis (RA), the use of a 'core' set of treatment outcomes was pioneered to ensure that the same outcomes are measured across all clinical trials to enable comparison of trial results. However, studies have not investigated the influence of patients' ethnic and cultural backgrounds on treatment outcomes. This pilot study identified 74 treatment outcomes from female Punjabi RA patients, including 21 new ones that were not identified in previous research with white British RA patients. The social impact of RA created significant additional burden for these Punjabi women, with 'less stigmatisation' and 'improved ability to carry out family duties' generated as important new outcomes. This study illustrates a need to address cultural validity in outcome elicitation and prioritisation, to ensure that interventions are evaluated using criteria that have meaning for people with that condition.
British journal of nursing (Mark Allen Publishing) 21(17):1015-23.
