Tools
Tools
Yates, Max 
ORCID: https://orcid.org/0000-0003-3977-8920, Owen, Claire E., Muller, Sara, Graham, Karly, Neill, Lorna M., Twohig, Helen, Boers, Maarten, Pujades-Rodriguez, Mar D. M., Goodman, Susan, Cheah, Jonathan T. L., Dejaco, Christian, Mukhtyar, Chetan ORCID: https://orcid.org/0000-0002-9771-6667, Nielsen, Berit Dalsgaard, Robson, Joanna, Simon, Lee S., Shea, Beverley, Mackie, Sarah L. and Hill, Catherine L.
(2020)
Feasibility and face validity of outcome measures for use in future studies of Polymyalgia Rheumatica (PMR): An OMERACT Study.
Journal of Rheumatology, 47 (9).
pp. 1379-1384.
ISSN 0315-162X
Preview |
PDF (Accepted_Manuscript)
- Accepted Version
Download (722kB) | Preview |
Abstract
OBJECTIVE: To survey participants with polymyalgia rheumatica (PMR) to evaluate the face validity, acceptability, and domain match of proposed candidate outcome measures. METHODS: A structured, online, anonymous survey was disseminated by patient support groups through their networks and online forums. The candidate outcome measures comprised (1) visual analog scale (VAS) and numerical rating score (NRS) to assess pain; (2) VAS, NRS, and duration to assess stiffness; (3) the modified Health Assessment Questionnaire and Health Assessment Questionnaire Disability Index to assess physical function; and (4) C-reactive protein and erythrocyte sedimentation rate to assess inflammation. Free-text answers were analyzed using descriptive thematic analysis to determine respondents' views of the candidate instruments. RESULTS: Seventy-eight people with PMR from 6 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 5 themes that participants considered inadequately covered by the proposed instruments. These related to (1) the variability, context, and location of pain; (2) the variability of stiffness; (3) fatigue; (4) disability; and (5) the correlation of inflammatory marker levels and severity of symptoms, sometimes reflecting disease activity and other times not. CONCLUSION: Participants reported additional aspects of their experience that are not covered by the proposed instruments, particularly for the experience of stiffness and effect of fatigue. New patient-reported outcome measures are required to increase the relevance of results from clinical trials to patients with PMR.
| Item Type: | Article |
|---|---|
| Faculty \ School: | Faculty of Medicine and Health Sciences > Norwich Medical School |
| UEA Research Groups: | Faculty of Science > Research Groups > Norwich Epidemiology Centre Faculty of Medicine and Health Sciences > Research Groups > Norwich Epidemiology Centre Faculty of Medicine and Health Sciences > Research Centres > Population Health |
| Related URLs: | |
| Depositing User: | LivePure Connector |
| Date Deposited: | 06 Feb 2020 04:56 |
| Last Modified: | 19 Oct 2023 02:36 |
| URI: | https://ueaeprints.uea.ac.uk/id/eprint/73981 |
| DOI: | 10.3899/jrheum.190575 |
Downloads
Downloads per month over past year
Actions (login required)
 |
View Item |