학술논문

The perceptions and experience of developing patient (version of) guidelines: a descriptive qualitative study with Chinese guideline developers.
Document Type
Article
Source
BMC Health Services Research. 7/24/2023, Vol. 23 Issue 1, p1-13. 13p. 1 Chart, 3 Maps.
Subject
Language
ISSN
1472-6963
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. What is new: To our knowledge, this is the first study to understand Chinese developers' perceptions of patient versions of guidelines (PVGs). We found that no participant noticed the role of PVG in aiding decision-making due to their low awareness of the necessity for patients to make their clinical decisions. Our study found that PVG developers have a misunderstanding of PVGs, which might be a reason why the interviewees stated that they used one of three models for the development of PVGs instead of following the GIN recommendation. Thus, a sound Chinese translation of the GIN material is urgently needed so that this misunderstanding can be avoided. This is the first study to explore challenges encountered by PVG developers during the PVG development, including: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. A comprehensive and pragmatic PVG development method to standardize PVG development and a publicly known and trusted platform that could disseminate PVGs in China is warranted. [ABSTRACT FROM AUTHOR]