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本文引用的文献

1
Development of patient versions of guidelines in Chinese mainland: A systematic survey of current practices and methods.中国大陆中文版指南患者版本的制定:现行实践和方法的系统调查。
Patient Educ Couns. 2022 Dec;105(12):3410-3421. doi: 10.1016/j.pec.2022.09.009. Epub 2022 Sep 16.
2
User testing of a Scottish Intercollegiate Guideline Network public guideline for the parents of children with autism.对苏格兰校际指南网公共指南的用户测试,该指南针对自闭症儿童的家长。
BMC Health Serv Res. 2022 Jan 15;22(1):77. doi: 10.1186/s12913-021-07384-2.
3
The patient engagement evaluation tool was valid for clinical practice guideline development.患者参与度评估工具对于临床实践指南的制定是有效的。
J Clin Epidemiol. 2022 Mar;143:61-72. doi: 10.1016/j.jclinepi.2021.11.034. Epub 2021 Nov 28.
4
How to Interpret and Use a Clinical Practice Guideline or Recommendation: Users' Guides to the Medical Literature.如何解读和使用临床实践指南或推荐意见:医学文献的使用者指南。
JAMA. 2021 Oct 19;326(15):1516-1523. doi: 10.1001/jama.2021.15319.
5
A conceptual framework for patient-directed knowledge tools to support patient-centred care: Results from an evidence-informed consensus meeting.面向患者的知识工具支持以患者为中心的护理的概念框架:基于循证共识会议的结果。
Patient Educ Couns. 2019 Oct;102(10):1898-1904. doi: 10.1016/j.pec.2019.05.003. Epub 2019 May 4.
6
Developing quality criteria for patient-directed knowledge tools related to clinical practice guidelines. A development and consensus study.制定与临床实践指南相关的以患者为导向的知识工具的质量标准。一项开发和共识研究。
Health Expect. 2019 Apr;22(2):201-208. doi: 10.1111/hex.12843. Epub 2018 Nov 11.
7
Clinical practice guidelines in China.中国临床实践指南。
BMJ. 2018 Feb 5;360:j5158. doi: 10.1136/bmj.j5158.
8
Dissemination of Clinical Practice Guidelines: A Content Analysis of Patient Versions.临床实践指南的传播:患者版本的内容分析
Med Decis Making. 2016 Aug;36(6):692-702. doi: 10.1177/0272989X16644427. Epub 2016 Apr 18.
9
Improving the user experience of patient versions of clinical guidelines: user testing of a Scottish Intercollegiate Guideline Network (SIGN) patient version.改善临床指南患者版本的用户体验:对苏格兰校际指南网络(SIGN)患者版本进行用户测试
BMC Health Serv Res. 2016 Feb 2;16:37. doi: 10.1186/s12913-016-1287-8.
10
Patient and public attitudes to and awareness of clinical practice guidelines: a systematic review with thematic and narrative syntheses.患者及公众对临床实践指南的态度与认知:一项采用主题与叙述性综合分析的系统评价
BMC Health Serv Res. 2014 Jul 27;14:321. doi: 10.1186/1472-6963-14-321.

中文指南开发者对制定患者(版本)指南的看法和经验:一项描述性定性研究。

The perceptions and experience of developing patient (version of) guidelines: a descriptive qualitative study with Chinese guideline developers.

机构信息

Centre for Evidence-Based Chinese Medicine, Beijing University of Chinese Medicine, Beijing, China.

Department of Nurse Anesthesia, Virginia Commonwealth University, Richmond, VG, USA.

出版信息

BMC Health Serv Res. 2023 Jul 24;23(1):789. doi: 10.1186/s12913-023-09591-5.

DOI:10.1186/s12913-023-09591-5
PMID:37488555
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10367247/
Abstract

OBJECTIVE

To understand developers' perception of patient (versions of) guidelines (PVGs), and identify challenges during the PVG development, with the aim to inform methodological guidance for future PVG development.

METHODS

We used a descriptive qualitative design. Semi-structured interviews were conducted virtually from December 2021 to April 2022, with a purposive sampling of 12 PVG developers from nine teams in China. Conventional and directed content analysis was used for data analysis.

RESULTS

The interviews identified PVG developers' understanding of PVGs, their current practice experience, and the challenges of developing PVGs. Participants believed PVGs were a type of health education material for patients; therefore, it should be based on patient needs and be understandable and accessible. Participants suggested that PVGs could be translated/adapted from one or several clinical practice guidelines (CPG), or developed de novo (i.e., the creation of an entirely new PVG with its own set of research questions that are independent of existing CPGs). Participants perceived those existing methodological guidelines for PVG development might not provide clear instructions for PVGs developed from multiple CPGs and from de novo development. Challenges to PVG development include (1) a lack of standardized and native guidance on developing PVGs; (2) a lack of standardized guidance on patient engagement; (3) other challenges: no publicly known and trusted platform that could disseminate PVGs; concerns about the conflicting interests with health professionals.

CONCLUSIONS AND PRACTICE IMPLICATIONS

Our study suggests clarifying the concept of PVG is the primary task to develop PVGs and carry out related research. There is a need to make PVG developers realize the roles of PVGs, especially in helping decision-making, to maximize the effect of PVG. It is necessary to develop native consensus-based guidance considering developers' perspectives regarding PVGs.

摘要

目的

了解开发者对患者指南(PVG)的认知,并识别在 PVG 开发过程中面临的挑战,旨在为未来的 PVG 开发提供方法学指导。

方法

我们采用描述性定性设计。于 2021 年 12 月至 2022 年 4 月,通过在中国的九个团队中进行有针对性的抽样,对 12 名 PVG 开发者进行了虚拟半结构式访谈。采用常规和定向内容分析进行数据分析。

结果

访谈确定了 PVG 开发者对 PVG 的理解、他们当前的实践经验以及开发 PVG 的挑战。参与者认为 PVG 是一种面向患者的健康教育材料;因此,它应该基于患者的需求,具有易懂性和可及性。参与者建议,PVG 可以从一个或多个临床实践指南(CPG)翻译/改编,或者从头开始开发(即创建一个具有自己一套独立于现有 CPG 的研究问题的全新 PVG)。参与者认为,现有的 PVG 开发方法学指南可能没有为从多个 CPG 和从头开始开发的 PVG 提供明确的指导。PVG 开发面临的挑战包括:(1)缺乏标准化和本土的 PVG 开发指南;(2)缺乏关于患者参与的标准化指南;(3)其他挑战:没有一个公开的、值得信赖的平台可以传播 PVG;对与卫生专业人员利益冲突的担忧。

结论和实践意义

我们的研究表明,明确 PVG 的概念是开发 PVG 并开展相关研究的首要任务。有必要使 PVG 开发者认识到 PVG 的作用,特别是在帮助决策方面,以最大限度地发挥 PVG 的效果。有必要从开发者的角度出发,制定基于本土共识的指南。