Anna Selva1, Andrea Juliana Sanabria2, Sandra Pequeño2, Yuan Zhang3, Ivan Solà4, Héctor Pardo-Hernandez4, Clara Selva5, Holger Schünemann3, Pablo Alonso-Coello6. 1. Clinical Epidemiology and Cancer Screening Department, Corporació Sanitària Parc Taulí, Parc del Taulí 1, 08208, Sabadell, Spain; Iberoamerican Cochrane Centre, Biomedical Research Institute Sant Pau (IIB Sant Pau), Barcelona, Spain; Research Network on Health Services in Chronic Diseases (REDISSEC), Spain. Electronic address: annaolid@gmail.com. 2. Iberoamerican Cochrane Centre, Biomedical Research Institute Sant Pau (IIB Sant Pau), Barcelona, Spain. 3. Department of Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada. 4. Iberoamerican Cochrane Centre, Biomedical Research Institute Sant Pau (IIB Sant Pau), Barcelona, Spain; CIBER Epidemiología y Salud Pública, (CIBERESP), Spain. 5. PETRO Research Group, Spain; Department of Social Psychology, Autonomous University of Barcelona, Barcelona, Spain. 6. Iberoamerican Cochrane Centre, Biomedical Research Institute Sant Pau (IIB Sant Pau), Barcelona, Spain; Department of Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada; CIBER Epidemiología y Salud Pública, (CIBERESP), Spain.
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.
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.
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