Kojima Masayo, Nakayama Takeo, Otani Takashi, Hasegawa Mieko, Kawahito Yutaka, Kaneko Yuko, Kishimoto Mitsumasa, Hirata Shintaro, Seto Yohei, Endo Hirahito, Ito Hiromu, Kojima Toshihisa, Nishida Keiichiro, Matsushita Isao, Tsutani Kiichiro, Igarashi Ataru, Kamatani Naoyuki, Miyasaka Nobuyuki, Yamanaka Hisashi
a Department of Medical Education , Nagoya City University Graduate School of Medical Sciences , Nagoya , Japan.
b Department of Health Informatics , Kyoto University School of Public Health , Kyoto , Japan.
Mod Rheumatol. 2017 Nov;27(6):924-929. doi: 10.1080/14397595.2016.1276511. Epub 2017 Jan 25.
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.
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.
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.
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.
患者的价值观和偏好是决定临床实践指南（CPG）中推荐强度的关键因素之一。本研究的目的是总结日本类风湿关节炎（RA）管理CPG制定过程中纳入患者认知的整合过程。
我们采用了混合方法。将可自行填写的问卷邮寄给从日本风湿病友好协会（JRFA）会员名单中随机抽取的2222名RA患者，该名单按年龄和地区分层。成立了一个由五名JRFA执行成员组成的焦点小组，以验证问卷调查结果。
共有1470名年龄在20 - 79岁之间的患者返回了问卷。对问卷数据的分析表明，CPG工作组选定的主题满足了患者的需求。焦点小组参与者不愿使用“偏好”一词，因为患者不想服用任何药物，但出于必要又不得不服用。
我们证实新的CPG成功解决了对风湿病学家和患者都很重要的临床问题。临床医生应了解患者对服药的抵触情绪，并充分解释每种药物的作用以提高依从性。
