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

Yan, Liying; Li, Shelly‐Anne; Jin, Xue-jing; Yang, Dan; Scott, Sarah; Wang, Zhijie; Hu, Xiaoyang; Wang, Xiaoqin; Hu, Jiale; Liang, Sai; Liu, Jianping

doi:10.1016/j.pec.2022.09.009

Cited by 3 publications

(7 citation statements)

References 13 publications

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“…According to our scoping review of PVG in China [ 8 ], 26 PVGs developed by 16 teams could be identified. We tried to acquire the contact information of all PVG teams in China; however, many PVGs only have registration information (PVG title, organization, name of the person who submitted the registration) available, and we could only obtain the contact information of 11 teams who were responsible for 15 PVGs.…”

Section: Methodsmentioning

confidence: 99%

“…We explored participants’ perceptions of PVG, experiences with current practice in PVG development and experiences with challenges in the PVG development process. Topics related to challenges encountered during the PVG development process were based on the development process identified in the scoping review of PVGs in China [ 8 ] and MC-PCG. Two investigators developed an initial draft of interview guide (LJ, JL) and discussed it with other research team members to obtain consensus and make amendments.…”

Section: Methodsmentioning

confidence: 99%

“…The earliest known PVGs in China date back to 2016 as documented by Jiang et al [ 6 ] and Li et al [ 7 ]. As of February 20, 2022, a total of 26 PVGs (both ongoing and completed) have been identified in China [ 8 ]. Even though the number of PVGs is increasing, it remains relatively small compared with the number of CPGs developed in mainland China (over 100 CPGs every year) [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

“…Because there is currently no commissioning organization for their development, but only a registration platform ( http://www.guidelines-registry.cn/ ) available for both PVGs and CPGs. Therefore, developers typically take the lead in developing a PVG for a particular disease, with input from a multidisciplinary team of clinical experts and patient representatives to ensure accurate translation of recommendations from other CPGs [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

“…The majority of PVG developers in China claim to have followed GIN’s public guidance when developing their PVGs [ 8 ]. However, despite citing GIN’s definition of PVG, most PVGs were not simply translations of existing CPGs into patient versions.…”

Section: Introductionmentioning

confidence: 99%

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

Yan

et al. 2023

BMC Health Serv Res

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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.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

Yan

et al. 2023

BMC Health Serv Res

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Methodology and reporting quality of patient and public versions of guidelines in China: A systematic review

Liu,

Yao,

Yang

et al. 2024

Clinical and Public Health Guidelines

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IntroductionThe development of patient and public versions of guidelines (PVGs) in China is still in its early stages. The aim of this article is to systematically identify the PVGs published or released in China, analyse their development methods, and assess their reporting quality.MethodsWe searched five major literature databases and conducted supplementary searches to identify all PVGs published or released by 8 January 2023 in China. After screening the literature according to the inclusion and exclusion criteria, we analysed the development methodology and evaluated the reporting quality of the included PVGs using the Reporting Items for Practice Guidelines in Healthcare‐Public or Patient Versions of Guidelines (RIGHT‐PVG). We reported this systematic review in compliance with the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses (PRISMA) guidelines.ResultsA total of 3795 records were first identified, and 17 PVGs were included. Nine PVGs reported their development methodology: seven used de novo development (similar to developing clinical practice guidelines [CPGs]), and two rewrote the recommendations of an existing CPG. The reporting quality differed substantially between the PVGs. The PVGs adhered to between 8 and 16 (47.1%–94.1%) of the 17 RIGHT‐PVG items, with a median of 9. All PVGs specified the topic addressed in the PVGs, introduced the target condition, described the purpose, scope and target users and had precise recommendations. In contrast, none of the PVGs listed questions for patients to ask their healthcare providers.ConclusionsOnly few PVGs have so far been released in China. Most PVGs were developed de novo from the evidence, while some were instead rewritten from an existing CPG. In addition, we encourage PVGs developers to follow RIGHT‐PVG checklist when writing the guidelines in the future.

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Mapping the awareness and knowledge about patient and public versions of guidelines among stakeholders in China: a cross-sectional survey

Liu,

Yao,

Luo

et al. 2024

Journal of Clinical Epidemiology

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

Cited by 3 publications

References 13 publications

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

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

Methodology and reporting quality of patient and public versions of guidelines in China: A systematic review

Mapping the awareness and knowledge about patient and public versions of guidelines among stakeholders in China: a cross-sectional survey

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