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

Meyer, Nora; Hellbrecht, Irma; Breuing, Jessica; Hauprich, Julia; Wahlen, Sarah; Könsgen, Nadja; Bühn, Stefanie; Becker, Monika; Blödt, Susanne; Carl, Günther; Follmann, Markus; Frenz, Stefanie; Langer, Thomas; Nothacker, Monika; Schaefer, Christof; Pieper, Dawid

doi:10.1016/j.jclinepi.2023.07.005

Cited by 9 publications

(6 citation statements)

References 27 publications

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“…International organizations seem to place less focus on detailed methodology, but rather on broad dissemination. As reported elsewhere [ 8 , 11 ], the terminology used for PVGs varies, even in the English-speaking community, which is also highlighted by the 8 different terms identified in 17 interviews.…”

Section: Discussionmentioning

confidence: 93%

“…Although there are already a variety of organizations producing PVGs, clear definitions of PVGs do not prevail, their purposes often remain unclear, and there is a lack of differentiation from other patient information tools [ 5 , 6 ]. In a recent scoping review, we found that some guidance documents on developing PVGs already exist [ 4 , 5 , 7 ] but are not yet widely implemented and followed and there is not yet an international consensus on basic methodological aspects in the development of PVGs [ 8 ]. Not many guideline organizations publish their methods used to develop PVGs as method reports, however, we assume that there are indeed internal standards within organizations [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

“…In a recent scoping review, we found that some guidance documents on developing PVGs already exist [ 4 , 5 , 7 ] but are not yet widely implemented and followed and there is not yet an international consensus on basic methodological aspects in the development of PVGs [ 8 ]. Not many guideline organizations publish their methods used to develop PVGs as method reports, however, we assume that there are indeed internal standards within organizations [ 8 ]. Thus, the consultation of experts involved in the development of PVGs is a further logical step to obtain information which can be incorporated in the further improvement of PVGs.…”

Section: Introductionmentioning

confidence: 99%

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Barriers and facilitators in developing patient versions of clinical practice guidelines - qualitative interviews on experiences of international guideline producers

Meyer,

Hauprich,

Breuing

et al. 2024

BMC Health Serv Res

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Background Several guideline organizations produce patient versions of clinical practice guidelines (PVGs) which translate recommendations into simple language. A former study of our working group revealed that few guideline organizations publish their methods used to develop PVGs. Clear definitions of PVGs do not prevail and their purposes often remain unclear. We aimed to explore experts’ perspectives on developing, disseminating and implementing PVGs to discuss and incorporate these experiences when consenting on methodological guidance and further improving PVGs. Methods We conducted 17 semi-structured telephone interviews with international experts working with PVGs from September 2021 through January 2022. We conducted the interviews in English or German, they were recorded and transcribed verbatim. We utilized Mayring’s qualitative content analysis with MAXQDA software to analyze the data. Results In two interviews two participants were interviewed at the same time. This resulted in a total of 19 participants from 16 different organizations and eight different countries participated. Most were female (16/19) and their experience in working with PVGs ranged from 1 to 20 years. All follow methodological standards when developing PVGs, but the extent of these standards and their public accessibility differs. Aims and target groups of PVGs vary between organizations. Facilitators for developing PVGs are working with a multidisciplinary team, financial resources, consultation processes and a high-quality underlying CPG. Facilitators for disseminating and implementing PVGs are using various strategies. Barriers, on the other hand, are the lack of these factors. All participants mentioned patient involvement as a key aspect in PVG development. Conclusion The steps in the PVG development process are largely similar across the countries. Focus is placed on the involvement of patients in the development process, although the extent of participation varies. The experts collectively attribute great importance to PVGs overall, but in order to constantly adapt to medical progress and changing conditions, the focus in the future may be more on formats like living guidelines. Although there are different views on the mandatory development of PVGs, there is a consistent call for more transparency regarding the methodology used for PVGs.

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Section: Discussionmentioning

confidence: 93%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Barriers and facilitators in developing patient versions of clinical practice guidelines - qualitative interviews on experiences of international guideline producers

Meyer,

Hauprich,

Breuing

et al. 2024

BMC Health Serv Res

Self Cite

View full text Add to dashboard Cite

show abstract

“…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.…”

Section: Introductionmentioning

confidence: 99%

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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“…To obtain information on this as well as on possible ways for improvements, a large multi-phase study was carried out. The study included a review to assess international methods and approaches of PVGs (19), qualitative interviews on experiences of international guideline producers as well as qualitative interviews and focus groups to analyse the national perspective on the implementation and dissemination of PVGs. Further information on the study can be found in the protocol (20).…”

mentioning

confidence: 99%

Recommendations to improve use and dissemination of patient versions of oncological clinical practice guidelines in Germany: results of a multi-stakeholder workshop

Könsgen,

Hauprich,

Wahlen

et al. 2023

Preprint

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Background: Oncological patients have high information needs that are often unmet. Patient versions of oncological clinical practice guidelines (PVG) translate clinical practice guidelines into laypersons’ language and might help to address patients’ information needs. Currently, 30 oncological PVG have been published in Germany and more are being developed. Following a large multi-phase project on oncological PVGs in Germany, recommendations to improve use and dissemination of PVG were adopted in a multi-stakeholder workshop. Methods: Organisations representing users of PVGs (patients, medical personnel, and multipliers), creators, initiators/funding organisations of PVGs, and organisations with methodological expertise in the development of clinical practice guidelines or in patient health information were invited to participate. The workshop included a World Café for discussion of pre-selected recommendations and structured consensus procedure for of all recommendations. Recommendations with agreement of > 75% were approved, and in case of ≤ 75% agreement, recommendations were rejected. Results: The workshop took place on 24th April 2023 in Cologne, Germany. Overall, 23 people from 24 organisations participated in the discussion. Of 35 suggested recommendations 28 recommendations reached consensus and were approved. The recommendations referre to the topics dissemination (N = 13), design and format (N = 7), (digital) links (N = 5), digitalisation (N = 4), up-to-dateness (N = 3), and use of the PVG in collaboration between healthcare providers and patients (N = 3). Conclusion: The practical recommendations consider various perspectives and can help to improve use and dissemination of oncological PVG in Germany. The inclusion of different stakeholders could facilitate the transfer of the results into practice.

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

Cited by 9 publications

References 27 publications

Barriers and facilitators in developing patient versions of clinical practice guidelines - qualitative interviews on experiences of international guideline producers

Barriers and facilitators in developing patient versions of clinical practice guidelines - qualitative interviews on experiences of international guideline producers

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

Recommendations to improve use and dissemination of patient versions of oncological clinical practice guidelines in Germany: results of a multi-stakeholder workshop

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