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

TY - JOUR

T1 - Patient involvement in the development of a handbook for moderate rheumatoid arthritis

AU - Prothero, Louise

AU - Georgopoulou, Sofia

AU - de Souza, Savia

AU - Bosworth, Ailsa

AU - Bearne, Lindsay Mary

AU - Lempp, Heidi Katharina

PY - 2016/4/18

Y1 - 2016/4/18

N2 - 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 objectivesThe 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.DesignWe held an audio-taped workshop with RA patients. The transcript of the workshop was analysed using thematic content analysis.ResultsFive 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.ConclusionThis 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.

AB - 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 objectivesThe 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.DesignWe held an audio-taped workshop with RA patients. The transcript of the workshop was analysed using thematic content analysis.ResultsFive 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.ConclusionThis 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.

U2 - doi:10.1111/hex.12457

DO - doi:10.1111/hex.12457

M3 - Article

SN - 1369-7625

SP - 1

EP - 10

JO - Health expectations : an international journal of public participation in health care and health policy

JF - Health expectations : an international journal of public participation in health care and health policy

ER -