Heterogeneous methodology in the development of patient versions of clinical practice guidelines - a scoping review

We aimed to gain an overview of the methods and approaches used to develop, disseminate, and implement patient versions of clinical practice guidelines (PVGs). We searched PubMed and MEDLINE through Ovid for articles reporting on the development, dissemination or implementation of PVGs until March 2022. We searched the homepages of guideline organizations, screened the reference lists of the included documents, and asked experts to complement the publications. We narratively synthesized the findings. Of 3941 publications screened, 27 were included in the study. The identified method reports focused on patient involvement and peer-review processes. The other included publications highlighted the relevance of broad dissemination strategies and emphasized the importance of patient involvement and improving the readability of PVGs by using lay terms and shorter sentences. The terminology used for PVGs varies widely. The extent to which the methods were described was heterogeneous. Organizations developing PVGs should make their methods publicly available and use uniform labeling for PVGs in English to improve their use and recognition, not only for other PVG producers but also for patients and the public. A consensus regarding a minimum reporting standard for developing PVGs internationally and developing guiding principles are desirable. •-Few organizations publish their methods for developing patient versions of guidelines•-Methods used focus on patient involvement and peer-review processes•-Broad dissemination is key to enhance awareness of patient versions of guidelines•-Terminology used for patient versions of guidelines varies•-A minimum reporting standard for patient versions of guidelines is desirable