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Title: Feasibility and face validity of outcome measures for use in future studies of Polymyalgia Rheumatica (PMR): An OMERACT Study.
Austin Authors: Yates, Max;Owen, Claire E ;Muller, Sara;Graham, Karly;Neill, Lorna;Twohig, Helen;Boers, Maarten;Pujades-Rodriguez, Mar;Goodman, Susan;Cheah, Jonathan;Dejaco, Christian;Mukhtyar, Chetan;Nielsen, Berit Dalsgaard;Robson, Joanna;Simon, Lee S;Shea, Beverley;Mackie, Sarah L;Hill, Catherine L
Affiliation: Department of Rheumatology, Hospital of Bruneck, Bruneck, Italy
Department of Medicine, Hospital for Special Surgery, New York, United States
Department of Rheumatology and Immunology, Medical University Graz, Austria
Department of Rheumatology, Norfolk and Norwich University Hospital, Norwich, United Kingdom
Department of Rheumatology, Aarhus University Hospital, Aarhus, Denmark
Department of Rheumatology, Faculty of Health and Applied Sciences, University of the West of England, Bristol, United Kingdom
SDG LLC, Cambridge, Massachusetts, United States
School of Epidemiology and Public Health, University of Ottawa, Ottawa, Canada
Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, United Kingdom
NIHR Leeds Biomedical Research Centre, Leeds Teaching Hospitals NHS Trust, Leeds, United Kingdom
Discipline of Medicine, The University of Adelaide, Adelaide, Australia
Rheumatology Unit, The Queen Elizabeth and Royal Adelaide Hospitals, Adelaide, Australia
Epidemiology Centre Versus Arthritis, Norwich Medical School, University of East Anglia, Norwich, United Kingdom
Department of Rheumatology, East Suffolk and North Essex Foundation Trust, Ipswich, United Kingdom
Department of Rheumatology, Austin Health, Heidelberg, Victoria, Australia
Department of Medicine, University of Melbourne, Melbourne, Australia
Primary Care Centre Versus Arthritis, Research Institute for Primary Care & Health Sciences, Keele University, Keele, United Kingdom
Department of Epidemiology and Biostatistics, and Amsterdam Rheumatology and Immunology Center, Amsterdam University Medical Centers, Vrije Universiteit, Amsterdam, the Netherlands
Leeds Institute of Health Sciences, University of Leeds, Leeds, United Kingdom
Issue Date: 1-Feb-2020 2020-02-01
Publication information: The Journal of rheumatology 2020; online first: 1 February
Abstract: The aim of this study was to survey participants with PMR to evaluate the face validity, acceptability and domain match of proposed candidate outcome measures. A structured, online, anonymous survey was disseminated by patient support groups via their networks and online forums. The candidate outcome measures comprised: 1. visual analogue scale (VAS), numerical rating score (NRS) to assess pain; 2. VAS, NRS and duration to assess stiffness; 3. the modified Health Assessment Questionnaire (mHAQ) and Health Assessment Questionnaire Disability Index (HAQ-DI) to assess physical function; 4. C-reactive protein (CRP), and erythrocyte sedimentation rate (ESR) to assess inflammation. Free text answers were analysed using descriptive thematic analysis to explore respondents' views of the candidate instruments. Seventy-eight people with PMR from six countries (UK, France, USA, Canada, Australia and New Zealand) participated in the survey. Most respondents agreed candidate instruments were acceptable or "good to go". Free text analysis identified five themes which participants felt were inadequately covered by the proposed instruments. These related to: (i) the variability, context and location of pain, (ii) the variability of stiffness, (iii) fatigue, (iv) disability, and (v) the correlation of inflammatory marker levels and severity of symptoms, sometimes reflecting disease activity and other times not. Participants reported additional aspects of their experience which are not covered by the proposed instruments particularly for the experience of stiffness and impact of fatigue. New patient-reported outcome measures are required to increase the relevance of results from clinical trials to patients with PMR.
DOI: 10.3899/jrheum.190575
PubMed URL: 32007937
ISSN: 0315-162X
Type: Journal Article
Appears in Collections:Journal articles

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