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摘要: 患者指南(patient version of guidelines, PVG)作为一种健康教育工具, 能够帮助患者更好地了解所患疾病, 促进医患共同决策, 改善患者健康结局。近年来随着PVG数量的增多, 其质量也倍受关注, 但如何科学、严谨、规范地为患者制订指南, 国内外尚无统一标准。本文通过介绍PVG的发展现状、制订原则、流程及报告规范, 在此基础上提出我国制订高质量PVG的思考与建议。Abstract: Patient version of guidelines(PVG) serves as a tool of health education to help patients better self-manage disease and promote shared decision-making between doctors and patients. As the number of PVG increased in recent years, their quality has gained much attention. However, there is currently no standard or guidance on how to develop PVG scientifically and rigorously. In this article, we introduce the current status, development principles, procedures and reporting standards of PVG. We also provide thoughts and suggestions on how to better develop PVG in China.利益冲突 无
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图 1 国际组织/机构制订的患者指南数量
USPSTF: U.S. Preventive Services Task Force(美国预防服务工作组)；RCOG: Royal College of Obstertricians Gynaecologists(英国皇家妇产科学院)；UMMC: University of Michigan Medical Center(密歇根大学医疗中心)；ACP: American College of Physicians(美国医师协会)；ISUOG: International Society of Ultrasound in Obstetrics and Gynecology(国际妇产科超声协会)；QLD: Queensland Health(昆士兰卫生组织); TES: The Endocrine Society(美国内分泌学会)；AUA: American Urological Association(美国泌尿外科协会)；SIGN: Scottish Intercollegiate Guidelines Network(苏格兰校际指南网络); CCA: Cancer Council Australia(澳大利亚癌症协会)；ESMO: European Society for Medical Oncology(欧洲肿瘤内科学会)；AAN: American Academy of Neurology(美国神经科学院)；ASCO: American Society of Clinical Oncology(美国临床肿瘤学会)；AGA: American Gastroenterological Association(美国胃肠病协会)；BCMA: British Columbia Medical Association(不列颠哥伦比亚医学会)；CJ: CreakyJoints(CreakyJoints和全球健康生活基金会)；NCCN: National Comprehensive Cancer Network(美国国家癌症综合网络)；ACS: American Cancer Society(美国癌症协会)；ESHRE: The European Society of Human Reproduction and Embryology(欧洲人类生殖与胚胎学会)；其他:制订患者指南数量＜5部的机构
表 1 患者指南与临床实践指南的比较
项目 患者指南 临床实践指南 使用人群 患者及家属、照护者、公众、新闻媒体从业人员 医务工作者和相关医疗卫生决策者 目的 帮助认识疾病和诊疗方案，促进医患沟通和共同决策，提高
患者依从性提供诊疗决策依据，规范诊疗行为 制订方式 基于临床实践指南改编，重新制订，更新 改编，重新制订，更新 语言 通俗、易懂 专业、精确 篇幅与风格 长度适中，风格多元 篇幅较长，严肃 传播载体 书籍、网页、宣传手册、图谱、视频、音频等 期刊或书籍 结局指标 主要关注病死率、生存率和生活质量等 预防、诊断、治疗和预后等临床结局指标 关注疾病 发病率较高，覆盖人群广，病程发展缓慢，一般可通过日常
行为干预改善临床结局的疾病几乎覆盖了所有疾病 参与制订人员 以患者/公众代表和临床专家共同参与 以临床专家为主 临床问题的遴选与确定 调查患者和公众，收集并凝练出关键问题 调查临床一线工作者，收集和遴选拟解决的关键问题 形成推荐意见 只反映患者关注/患者和医生可讨论的推荐意见 一般10~20条推荐意见 推荐意见 以患者/公众代表和临床专家共同参与 以临床专家为主 参与制订人员 一般采用“必须” “应该”或“可能”等字眼进行表述 一般采用强推荐或弱推荐 报告与撰写 RIGHT for PVG RIGHT RIGHT：国际实践指南报告标准；PVG:患者指南 
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