Costello, R, Jacklin, C, Jameson Evans, M, McBeth, J and Dixon, WG (2018) Representativeness of a digitally engaged population and a patient organisation population with rheumatoid arthritis and their willingness to participate in research: a cross-sectional study. RMD Open, 4 (1). e000664 - ?. ISSN 2056-5933

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Objectives: To describe (1) the representativeness of (a) users of an online health community ( (HU)) with rheumatoid arthritis (RA) and (b) paid members of an RA patient organisation, the National Rheumatoid Arthritis Society (NRAS), compared with the general RA population; and (2) the willingness of HU users with RA to participate in types of research (surveys, use of an app or activity tracker, and trials). Methods: A pop-up survey was embedded on HU to determine the characteristics of users and their willingness to participate in research. An anonymous data set of NRAS member characteristics was provided by the NRAS (N=2044). To represent the general RA population, characteristics of people with RA were identified from the Clinical Practice Research Datalink (CPRD) (N=20 594). Cross-sectional comparisons were made across the three groups. Results: Compared with CPRD, HU respondents (n=615) were significantly younger (49% aged below 55 years compared with 23% of CPRD patients), significantly more deprived (21% in the most deprived Townsend quintile compared with 12% of CPRD patients) and had more recent disease, with 62% diagnosed between 2010 and 2016 compared with 37% of CPRD patients. NRAS members were more similar to the CPRD, but significantly under-represented those aged 75 years or over and over-represented those aged 55-75 years compared with the CPRD. High proportions of HU users were willing to participate in future research of all types. Conclusions: NRAS members were broadly representative of the general RA population. HU users were younger, more deprived and more recently diagnosed. HU users were willing to participate in most types of research.

Item Type: Article
Additional Information: © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted. This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See:
Uncontrolled Keywords: epidemiology, patient perspective., rheumatoid arthritis
Subjects: R Medicine > RA Public aspects of medicine
Divisions: Faculty of Medicine and Health Sciences > Primary Care Health Sciences
Related URLs:
Depositing User: Symplectic
Date Deposited: 18 Sep 2018 14:26
Last Modified: 18 Sep 2018 14:26

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