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. 2023 Sep:161:53-64.
doi: 10.1016/j.jclinepi.2023.07.005. Epub 2023 Jul 21.

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

Nora Meyer  1 , Irma Hellbrecht  2 , Jessica Breuing  2 , Julia Hauprich  2 , Sarah Wahlen  2 , Nadja Könsgen  2 , Stefanie Bühn  2 , Monika Becker  2 , Susanne Blödt  3 , Günther Carl  4 , Markus Follmann  5 , Stefanie Frenz  6 , Thomas Langer  5 , Monika Nothacker  3 , Nancy Santesso  7 , Corinna Schaefer  8 , Dawid Pieper  9
Affiliations

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

Nora Meyer et al. J Clin Epidemiol. 2023 Sep.

Abstract

Objectives: We aimed to gain an overview of the methods and approaches used to develop, disseminate, and implement patient versions of clinical practice guidelines (PVGs).

Methods: 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.

Results: Of 3,941 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.

Conclusion: 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 is desirable.

Keywords: Development process; Evidence-based patient information; Methods; Patient information; Patient involvement; Patient versions of clinical practice guidelines.

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Conflict of interest statement

Declaration of competing interest The authors (N.M., I.H., J.B., J.H., S.W., N.K., S.B., G.C., S.F., N.S., and D.W.) declare that they have no competing interests. M.B. is involved in the development of PVGs in oncology in Germany. S.Bl. and M.N. are representatives of the Association of the Scientific Medical Societies in Germany (AWMF), which receives constant financial support from the German Cancer Aid to support the German Guideline Program in Oncology (GGPO) and are involved in the methodological counseling of oncology and other CPGs. M.F. is a representative of a publisher of PVGs in oncology in Germany and is involved in the methodological counseling of CPGs and PVGs in oncology. T.L. is a representative for the publisher of PVGs in oncology in Germany. C.S. was involved in the development of PVGs in oncology in Germany until 2019 and is responsible for the development of patient versions in the National Disease Management Guidelines Program and their methodological refinement.

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