Cargando…

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

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 managem...

Descripción completa

Detalles Bibliográficos
Autores principales: Prothero, Louise, Georgopoulou, Sofia, de Souza, Savia, Bosworth, Ailsa, Bearne, Lindsay, Lempp, Heidi
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2016
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5354020/
https://www.ncbi.nlm.nih.gov/pubmed/27086728
http://dx.doi.org/10.1111/hex.12457
_version_ 1782515249164845056
author Prothero, Louise
Georgopoulou, Sofia
de Souza, Savia
Bosworth, Ailsa
Bearne, Lindsay
Lempp, Heidi
author_facet Prothero, Louise
Georgopoulou, Sofia
de Souza, Savia
Bosworth, Ailsa
Bearne, Lindsay
Lempp, Heidi
author_sort Prothero, Louise
collection PubMed
description 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.
format Online
Article
Text
id pubmed-5354020
institution National Center for Biotechnology Information
language English
publishDate 2016
publisher John Wiley and Sons Inc.
record_format MEDLINE/PubMed
spelling pubmed-53540202017-04-01 Patient involvement in the development of a handbook for moderate rheumatoid arthritis Prothero, Louise Georgopoulou, Sofia de Souza, Savia Bosworth, Ailsa Bearne, Lindsay Lempp, Heidi Health Expect Original Research Papers 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. John Wiley and Sons Inc. 2016-04-18 2017-04 /pmc/articles/PMC5354020/ /pubmed/27086728 http://dx.doi.org/10.1111/hex.12457 Text en © 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 (http://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Original Research Papers
Prothero, Louise
Georgopoulou, Sofia
de Souza, Savia
Bosworth, Ailsa
Bearne, Lindsay
Lempp, Heidi
Patient involvement in the development of a handbook for moderate rheumatoid arthritis
title Patient involvement in the development of a handbook for moderate rheumatoid arthritis
title_full Patient involvement in the development of a handbook for moderate rheumatoid arthritis
title_fullStr Patient involvement in the development of a handbook for moderate rheumatoid arthritis
title_full_unstemmed Patient involvement in the development of a handbook for moderate rheumatoid arthritis
title_short Patient involvement in the development of a handbook for moderate rheumatoid arthritis
title_sort patient involvement in the development of a handbook for moderate rheumatoid arthritis
topic Original Research Papers
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5354020/
https://www.ncbi.nlm.nih.gov/pubmed/27086728
http://dx.doi.org/10.1111/hex.12457
work_keys_str_mv AT protherolouise patientinvolvementinthedevelopmentofahandbookformoderaterheumatoidarthritis
AT georgopoulousofia patientinvolvementinthedevelopmentofahandbookformoderaterheumatoidarthritis
AT desouzasavia patientinvolvementinthedevelopmentofahandbookformoderaterheumatoidarthritis
AT bosworthailsa patientinvolvementinthedevelopmentofahandbookformoderaterheumatoidarthritis
AT bearnelindsay patientinvolvementinthedevelopmentofahandbookformoderaterheumatoidarthritis
AT lemppheidi patientinvolvementinthedevelopmentofahandbookformoderaterheumatoidarthritis