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

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.

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

“…11 However, a uniform definition of PVGs has not yet been established, and the development methodology has not been described in detail in most PVGs. [12][13][14][15][16][17][18] Santesso et al analysed 34 PVGs developed by 17 organizations and found that only 50% of the PVGs described, for example, what is the definition of a guideline or how the PVGs was developed. 16 Guidelines International Network (GIN) published the G-I-N Public Toolkit: Patient and Public Involvement in Guidelines in 2015, which addresses the definition of PVGs, the workflow, principles and methodology of their development and the form of presentation.…”