Integrating patients’ perceptions into clinical practice guidelines for the management of rheumatoid arthritis in Japan

Abstract

Objective: Patients’ values and preferences are among the key factors that determine the strength of recommendations presented in clinical practice guidelines (CPG). The aim of this study was to summarize the integration process for patients’ perceptions into the development of CPG for rheumatoid arthritis (RA) management in Japan.

Methods: We used a mixed-methods approach. Questionnaires that could be self-administered were mailed to 2222 RA patients randomly selected from the Japan Rheumatism Friendship Association (JRFA) membership list that was age- and prefecture-stratified. A focus group with five JRFA executive members was formed to verify the results of the questionnaire.

Results: A total of 1470 patients aged 20–79 years old returned the questionnaire. Analysis of the questionnaire data revealed that the topics selected by the CPG task force met the patients’ needs. The focus group participants showed reluctance to use the term ‘preference’ because patients would not want to take any medications but would have to take them out of necessity.

Conclusions: We confirmed that the new CPG successfully addressed clinical issues that were important to both rheumatologists and patients. Clinicians should understand patients’ reluctance to take medications and explain the role of each medication well to increase adherence.

Keywords:

• Rheumatoid arthritis
• patients’ perspectives
• focus group
• questionnaire survey
• clinical practice guidelines

Acknowledgements

We would like to thank all the participants for their commitment to the study. We also thank Mr. Takeshi Hida, Mr. Yasuhiro Uchida, and Ms. Miwa Mori for their assistance with data acquisition.

Disclosure statement

None.

Additional information

Funding

This work was supported by Health and Labour Sciences Research Grants for Research on Rare and Intractable Diseases [grant number H26-Meneki-Shitei-021] and a grant from the Japan Society for the Promotion of Science, JSPS KAKENHI [grant numbers JP21590708, JP26460608].