Development of patient versions of guidelines in Chinese mainland: A systematic survey of current practices and methods

• Published in: Patient education and counseling 2022-12, Vol.105 (12), p.3410-3421
• Main Authors: Yan, Li-Jiao, Li, Shelly-Anne, Jin, Xue-jing, Yang, Dan, Scott, Sarah E., Wang, Zhi-Jie, Hu, Xiao-Yang, Wang, Xiao-qin, Hu, Jia-le, Liang, Shi-Bing, Liu, Jian-Ping
• Format: Article
• Language: English
• Subjects: Chinese mainland; Clinical practice guidelines; Patient engagement; Patient involvement; Patient version of guidelines; Survey
• ISSN: 0738-3991; 1873-5134
• DOI: 10.1016/j.pec.2022.09.009

To review current practices and methods underlying the development of patient versions of guidelines (PVGs) in Chinese mainland. We systematically searched for PVGs created or published between January 2010 and February 2022. We conducted a framework analysis for the development process and assessed the compliance of PVGs using the Reporting Checklist for Public Versions of Guidelines (RIGHT-PVG). We identified 26 PVGs developed by 16 PVG-working teams. In accordance with the Guidelines International Network (GIN), only two PVGs were translated using one clinical practice guideline (CPG) provided by the CPG-working group source. Several CPGs and other information sources were integrated and translated into a single PVG by other PVG teams. Moreover, we identified various practices described by different PVG teams that could be structured into six steps. Out of the 17 RIGHT-PVG items, five items were fully reported in all PVGs, while two items (“Provide a summary of the PVG” and “Provide a list of terms and abbreviations”) were not reported in any of the PVGs. A relatively small number of PVGs were developed in Chinese mainland. The development of a PVG requires comprehensive methodological guidance based on several CPGs and other sources of information as opposed to only using one. •To our knowledge, this is the first review of PVGs developed in Chinese mainland. PVG development is still in its early phases in China with a relatively small number of PVGs published.•We identified various practices described by different PVG teams in Chinese mainland. We structured the development process of included PVGs into six steps, including: (1) team; (2) selection of the scope and source guideline(s); (3) assessment of source materials；(4) decision-making process; (5) the content and format；(6) optimization of PVG and follow-up.•To facilitate the development of PVGs, a comprehensive methodological guidance not only providing guidance for PVGs developed based on one PVG, but also on multiple CPGs and other source information is needed.•Many PVGs developers took the approach of de novo development for PVGs, with the guidance World Health Organization’s Handbook for Guideline Development. This result indicates a lack of PVG knowledge among developers as there may be misunderstandings about the concept of PVGs•The PVGs provided adequate reporting in several RIGHT-PVG items, but they can still be further improved in insufficiently reported areas to help people assess the t