Elsevier

Journal of Clinical Epidemiology

Volume 88, August 2017, Pages 102-112
Journal of Clinical Epidemiology

Review
Incorporating patients' views in guideline development: a systematic review of guidance documents

https://doi.org/10.1016/j.jclinepi.2017.05.018Get rights and content

Abstract

Objectives

To assess how guidance documents for developing clinical guidelines (CGs) address the incorporation of patients' views in CGs.

Study Design and Setting

Systematic review to identify the methodology provided in guidance documents for incorporating (1) patients or representatives and (2) patients' views in the CG development process. The search was performed in 2017 in five databases. Two authors selected the studies, and data extraction was double-checked.

Results

We included guidance documents from 56 institutions. Of those, 40 (71.4%) recommended the inclusion of patients or their representatives, mainly for developing recommendations (14/40, 35.0%); reviewing the final version (13/40, 32.5%); formulating clinical questions (13/40, 32.5%); defining the scope and objectives (10/40, 25.0%); and dissemination and implementation (10/40, 25.0%). Concrete methods on how to incorporate patients were provided by 47.5% (19/40) of institutions. Forty (71.4%) institutions provided additional strategies to incorporate patients' views. The majority (30/40, 75.0%) suggested sources for obtaining these views (consultation with patients [24/40, 60.0%], using panels' judgment [10/40, 25.0%], conducting de novo research [10/40, 25.0%], or a systematic review [9/40, 22.5%]).

Conclusion

Although most institutions suggest incorporating patients and their views when developing CGs, little detail is provided on how to do this. Institutions should provide more guidance as this could have a positive impact in guideline applicability.

Introduction

Clinical guidelines are statements that include recommendations based on a systematic review of the available evidence, providing the benefits and downfalls of alternative care options [1]. Clinical guidelines have the potential to facilitate informed decision making, improve patient care, and optimize the use of available resources [1], [2].

When drafting recommendations, clinical guideline panels need to make judgments about several criteria, including the decision about the balance of the effects for the main outcomes, desirable and undesirable. To achieve this, it is important that they consider the views of those affected by the recommendation, typically the patients. This is especially significant as the relative importance (value) that patients place on health care outcomes often vary and may differ from those of clinicians [3], [4].

The GRADE working group has initially referred to this concept as “patients' values and preferences” [5]. GRADE has recently developed the Evidence to Decision (EtD) frameworks (https://ietd.epistemonikos.org), an evolution of the previous Evidence to Decision table [6], that facilitate a structured approach for moving from evidence to a recommendation (or a decision) [7], [8], [9]. Among the suggested criteria to take into consideration when adopting these frameworks, two are particularly relevant to patients' views: (1) considering whether there is important variability or uncertainty on how patients—or those affected by the recommendation or the decision—value the main outcomes (desirable and undesirable) and (2) considering whether the intervention is acceptable to patients and other stakeholders.

Considering patients' views is an important aspect but often ignored by guideline panels [10], [11], [12], [13]. To date, there has been little guidance on how to incorporate this aspect into clinical guideline (CG) development [14]. To our knowledge, no previous assessment of how guidance documents for clinical guidelines address this issue has been completed. Hence, to address this shortcoming, we conducted a systematic review of guidance documents for clinical guidelines to identify and describe the proposed methods to incorporate (1) patients or their representatives and (2) patients' views when developing clinical guidelines.

Section snippets

Methods

We registered the protocol of this systematic review in PROSPERO (http://www.crd.york.ac.uk/PROSPERO; registration number CRD42014013869). We report the results of the review according to the PRISMA statement [15].

Selection of guidance documents for guidelines

We describe the eligibility process in a PRISMA flowchart [15] (Fig. 1). We screened the titles and abstracts of 5,957 references obtained from the search and selected 84 records for full-text assessment. Of these, we excluded 16 references either because they were not guidance documents for guidelines [8], were outdated [2], were impossible to retrieve [2], were publications associated with documents already included [2], or were documents focused on adaptation of clinical guidelines already

Main findings

Our systematic review shows that most guidance documents for developing guidelines recommend including patients and/or their views in the guideline development process. However, they provided limited guidance on how to implement this. We did not observe differences according to the institutions that produced the guidance documents, their geographical region, or year of publication.

Despite that over two-thirds of the identified guidance documents recommended the inclusion of patients or their

Acknowledgments

The authors thank Robin Vernooij for helping in the data abstraction of documents written in German and Dutch and Andrea Cervera for reviewing the English of the article and for her edits.

Authors' contributions: Conception and design were done by A.S., A.J.S., P.A.-C., and H.S. Undertaking searches and selection of guidance documents were helped by A.S., A.J.S., Y.Z., I.S., and C.S. Extracting the data was done by A.S., A.J.S., S.P., I.S., and C.S. Data analysis and interpretation was carried

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    Funding: This work was supported by a research grant from the Instituto de Salud Carlos III (FIS PI14/02006 to P.A.-C.). P.A.-C. is funded by a Miguel Servet research contract from the Instituto de Salud Carlos III (CP16/00137).

    Conflict of interest: A.S. is a doctoral candidate in Public Health and Methodology of Biomedical Research, at the Department of Paediatrics, Obstetrics, Gynaecology and Preventive Medicine at Universitat Autònoma de Barcelona, Spain.

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