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Patient involvement in the development of a handbook for moderate rheumatoid arthritis.

Prothero, L; Georgopoulou, S; de Souza, S; Bosworth, A; Bearne, L; Lempp, H (2017) Patient involvement in the development of a handbook for moderate rheumatoid arthritis. Health Expect, 20 (2). pp. 288-297. ISSN 1369-7625 https://doi.org/10.1111/hex.12457
SGUL Authors: Bearne, Lindsay Mary

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Abstract

BACKGROUND: Self-management is a key recommendation for people with rheumatoid arthritis (RA). Educational materials may support self-management, and increasingly patients are becoming involved with the development of these materials. The TITRATE trial compares the effectiveness of intensive management to standard care in patients with moderate RA across England. As part of the intensive management intervention, participants are given a handbook. AIM AND OBJECTIVES: The aim of this study was to develop a handbook to support the intensive management. The objectives were to: (i) involve patients in the identification of relevant information for inclusion in the TITRATE handbook; (ii) ensure the content of the handbook is acceptable and accessible. DESIGN: We held an audio-taped workshop with RA patients. The transcript of the workshop was analysed using thematic content analysis. RESULTS: Five main themes were identified as follows: 'rheumatoid arthritis treatment, perceptions of rheumatoid arthritis, the importance of individualized goals, benefits of self-management and the patient handbook'. Feedback from the workshop was incorporated into the handbook, and patients' anonymous testimonies were added. CONCLUSION: This study demonstrates that patient contribution to the development of educational material to support intensive management of RA is both feasible and valuable. A qualitative evaluation of the use and impact of the handbook with patients and practitioners is planned on completion of the TITRATE trial.

Item Type: Article
Additional Information: © 2016 The Authors. Health Expectations published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Keywords: intensive management, patient education, rheumatoid arthritis, self-management, user involvement, Adult, Aged, Arthritis, Rheumatoid, England, Female, Humans, Mass Media, Middle Aged, Patient Education as Topic, Patient Participation, Self Care, Humans, Arthritis, Rheumatoid, Self Care, Mass Media, Adult, Aged, Middle Aged, Patient Participation, England, Female, Patient Education as Topic, intensive management, patient education, rheumatoid arthritis, self-management, user involvement, 1110 Nursing, 1117 Public Health and Health Services, 1701 Psychology, Public Health
SGUL Research Institute / Research Centre: Academic Structure > Population Health Research Institute (INPH)
Journal or Publication Title: Health Expect
ISSN: 1369-7625
Language: eng
Dates:
DateEvent
16 March 2017Published
18 April 2016Published Online
27 February 2016Accepted
Publisher License: Creative Commons: Attribution 4.0
Projects:
Project IDFunderFunder ID
RP-PG-0610-10066National Institute for Health Researchhttp://dx.doi.org/10.13039/501100000272
PubMed ID: 27086728
Web of Science ID: WOS:000397210400010
Go to PubMed abstract
URI: https://openaccess.sgul.ac.uk/id/eprint/114859
Publisher's version: https://doi.org/10.1111/hex.12457

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