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Using patient values and preferences to inform the importance of health outcomes in practice guideline development following the GRADE approach

Identifieur interne : 000091 ( Main/Exploration ); précédent : 000090; suivant : 000092

Using patient values and preferences to inform the importance of health outcomes in practice guideline development following the GRADE approach

Auteurs : Yuan Zhang ; Pablo Alonso Coello [Espagne] ; Jan Bro Ek [Canada] ; Wojtek Wiercioch ; Itziar Etxeandia-Ikobaltzeta ; Elie A. Akl [Liban] ; Joerg J. Meerpohl [Allemagne] ; Waleed Alhazzani [Canada] ; Alonso Carrasco-Labra [Chili] ; Rebecca L. Morgan ; Reem A. Mustafa [États-Unis] ; John J. Riva ; Ainsley Moore ; Juan José Yepes-Nu Ez [Colombie] ; Carlos Cuello-Garcia [Mexique] ; Zulfa Alrayees [Arabie saoudite] ; Veena Manja [États-Unis] ; Maicon Falavigna [Brésil] ; Ignacio Neumann [Chili] ; Romina Brignardello-Petersen [Chili] ; Nancy Santesso ; Bram Rochwerg [Canada] ; Andrea Darzi [Liban] ; Maria Ximena Rojas [Colombie] ; Yaser Adi [Arabie saoudite] ; Claudia Bollig [Allemagne] ; Reem Waziry [Liban, Australie] ; Holger J. Schünemann [Canada]

Source :

RBID : PMC:5412036

Descripteurs français

English descriptors

Abstract

Background

There are diverse opinions and confusion about defining and including patient values and preferences (i.e. the importance people place on the health outcomes) in the guideline development processes. This article aims to provide an overview of a process for systematically incorporating values and preferences in guideline development.

Methods

In 2013 and 2014, we followed the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach to adopt, adapt and develop 226 recommendations in 22 guidelines for the Ministry of Health of the Kingdom of Saudi Arabia. To collect context-specific values and preferences for each recommendation, we performed systematic reviews, asked clinical experts to provide feedback according to their clinical experience, and consulted patient representatives.

Results

We found several types of studies addressing the importance of outcomes, including those reporting utilities, non-utility measures of health states based on structured questionnaires or scales, and qualitative studies. Guideline panels used the relative importance of outcomes based on values and preferences to weigh the balance of desirable and undesirable consequences of alternative intervention options. However, we found few studies addressing local values and preferences.

Conclusions

Currently there are different but no firmly established processes for integrating patient values and preferences in healthcare decision-making of practice guideline development. With GRADE Evidence-to-Decision (EtD) frameworks, we provide an empirical strategy to find and incorporate values and preferences in guidelines by performing systematic reviews and eliciting information from guideline panel members and patient representatives. However, more research and practical guidance are needed on how to search for relevant studies and grey literature, assess the certainty of this evidence, and best summarize and present the findings.

Electronic supplementary material

The online version of this article (doi:10.1186/s12955-017-0621-0) contains supplementary material, which is available to authorized users.


Url:
DOI: 10.1186/s12955-017-0621-0
PubMed: 28460638
PubMed Central: 5412036


Affiliations:


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Hamilton, Canada</nlm:aff>
<country xml:lang="fr">Canada</country>
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<country xml:lang="fr">Liban</country>
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</institution-wrap>
Bogotá, Colombia</nlm:aff>
<country xml:lang="fr">Colombie</country>
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<author>
<name sortKey="Adi, Yaser" sort="Adi, Yaser" uniqKey="Adi Y" first="Yaser" last="Adi">Yaser Adi</name>
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<institution-wrap>
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Riyadh, Saudi Arabia</nlm:aff>
<country xml:lang="fr">Arabie saoudite</country>
<wicri:regionArea>Riyadh</wicri:regionArea>
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<author>
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<institution-wrap>
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</institution-wrap>
Freiburg, Germany</nlm:aff>
<country xml:lang="fr">Allemagne</country>
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</affiliation>
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<author>
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Beirut, Lebanon</nlm:aff>
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</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
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Hamilton, Canada</nlm:aff>
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<title xml:lang="en" level="a" type="main">Using patient values and preferences to inform the importance of health outcomes in practice guideline development following the GRADE approach</title>
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<name sortKey="Zhang, Yuan" sort="Zhang, Yuan" uniqKey="Zhang Y" first="Yuan" last="Zhang">Yuan Zhang</name>
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1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="Coello, Pablo Alonso" sort="Coello, Pablo Alonso" uniqKey="Coello P" first="Pablo Alonso" last="Coello">Pablo Alonso Coello</name>
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<institution>Iberoamerican Cochrane Centre, CIBERESP-IIB Sant Pau,</institution>
</institution-wrap>
Barcelona, Spain</nlm:aff>
<country xml:lang="fr">Espagne</country>
<wicri:regionArea>Barcelona</wicri:regionArea>
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</author>
<author>
<name sortKey="Bro Ek, Jan" sort="Bro Ek, Jan" uniqKey="Bro Ek J" first="Jan" last="Bro Ek">Jan Bro Ek</name>
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</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
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Hamilton, Canada</nlm:aff>
<country xml:lang="fr">Canada</country>
<wicri:regionArea>Hamilton</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Wiercioch, Wojtek" sort="Wiercioch, Wojtek" uniqKey="Wiercioch W" first="Wojtek" last="Wiercioch">Wojtek Wiercioch</name>
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1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="Etxeandia Ikobaltzeta, Itziar" sort="Etxeandia Ikobaltzeta, Itziar" uniqKey="Etxeandia Ikobaltzeta I" first="Itziar" last="Etxeandia-Ikobaltzeta">Itziar Etxeandia-Ikobaltzeta</name>
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<nlm:aff id="Aff1">
<institution-wrap>
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1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
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</author>
<author>
<name sortKey="Akl, Elie A" sort="Akl, Elie A" uniqKey="Akl E" first="Elie A." last="Akl">Elie A. Akl</name>
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<nlm:aff id="Aff1">
<institution-wrap>
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</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
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</institution-wrap>
Beirut, Lebanon</nlm:aff>
<country xml:lang="fr">Liban</country>
<wicri:regionArea>Beirut</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Meerpohl, Joerg J" sort="Meerpohl, Joerg J" uniqKey="Meerpohl J" first="Joerg J." last="Meerpohl">Joerg J. Meerpohl</name>
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<nlm:aff id="Aff5">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.5963.9</institution-id>
<institution>Cochrane Germany, Medical Center - University of Freiburg, Faculty of Medicine,</institution>
<institution>University of Freiburg,</institution>
</institution-wrap>
Freiburg, Germany</nlm:aff>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Freiburg</wicri:regionArea>
</affiliation>
<affiliation>
<nlm:aff id="Aff6">
<institution-wrap>
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<institution></institution>
<institution>Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité – U1153, Inserm/Université Paris Descartes, Cochrane France, Hôpital Hôtel-Dieu,</institution>
</institution-wrap>
1 place du Parvis Notre Dame, 75181 Paris, Cedex 04 France</nlm:aff>
<wicri:noCountry code="subfield">Cedex 04 France</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="Alhazzani, Waleed" sort="Alhazzani, Waleed" uniqKey="Alhazzani W" first="Waleed" last="Alhazzani">Waleed Alhazzani</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
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<institution-wrap>
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<institution>Department of Medicine,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
Hamilton, Canada</nlm:aff>
<country xml:lang="fr">Canada</country>
<wicri:regionArea>Hamilton</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Carrasco Labra, Alonso" sort="Carrasco Labra, Alonso" uniqKey="Carrasco Labra A" first="Alonso" last="Carrasco-Labra">Alonso Carrasco-Labra</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
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<institution>Evidence-Based Dentistry Unit, Faculty of Dentistry,</institution>
<institution>Universidad de Chile,</institution>
</institution-wrap>
Santiago, Chile</nlm:aff>
<country xml:lang="fr">Chili</country>
<wicri:regionArea>Santiago</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Morgan, Rebecca L" sort="Morgan, Rebecca L" uniqKey="Morgan R" first="Rebecca L." last="Morgan">Rebecca L. Morgan</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="Mustafa, Reem A" sort="Mustafa, Reem A" uniqKey="Mustafa R" first="Reem A." last="Mustafa">Reem A. Mustafa</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
<affiliation wicri:level="2">
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<institution-wrap>
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<institution>Departments of Internal Medicine/Nephrology and Biomedical and Health Informatics,</institution>
<institution>University of Missouri-Kansas City,</institution>
</institution-wrap>
Kansas City, MO USA</nlm:aff>
<country>États-Unis</country>
<placeName>
<region type="state">Missouri (État)</region>
</placeName>
<wicri:cityArea>Kansas City</wicri:cityArea>
</affiliation>
</author>
<author>
<name sortKey="Riva, John J" sort="Riva, John J" uniqKey="Riva J" first="John J." last="Riva">John J. Riva</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
<affiliation>
<nlm:aff id="Aff9">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Family Medicine,</institution>
<institution>McMaster University, David Braley Health Sciences Centre,</institution>
</institution-wrap>
100 Main Street West, 6th Floor, Hamilton, ON L8P 1H6 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8P 1H6 Canada</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="Moore, Ainsley" sort="Moore, Ainsley" uniqKey="Moore A" first="Ainsley" last="Moore">Ainsley Moore</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
<affiliation>
<nlm:aff id="Aff9">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Family Medicine,</institution>
<institution>McMaster University, David Braley Health Sciences Centre,</institution>
</institution-wrap>
100 Main Street West, 6th Floor, Hamilton, ON L8P 1H6 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8P 1H6 Canada</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="Yepes Nu Ez, Juan Jose" sort="Yepes Nu Ez, Juan Jose" uniqKey="Yepes Nu Ez J" first="Juan José" last="Yepes-Nu Ez">Juan José Yepes-Nu Ez</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
<affiliation wicri:level="1">
<nlm:aff id="Aff10">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.412881.6</institution-id>
<institution>School of Medicine,</institution>
<institution>University of Antioquia,</institution>
</institution-wrap>
Medellín, Colombia</nlm:aff>
<country xml:lang="fr">Colombie</country>
<wicri:regionArea>Medellín</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Cuello Garcia, Carlos" sort="Cuello Garcia, Carlos" uniqKey="Cuello Garcia C" first="Carlos" last="Cuello-Garcia">Carlos Cuello-Garcia</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
<affiliation wicri:level="1">
<nlm:aff id="Aff11">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.419886.a</institution-id>
<institution></institution>
<institution>Tecnologico de Monterrey School of Medicine,</institution>
</institution-wrap>
Monterrey, Mexico</nlm:aff>
<country xml:lang="fr">Mexique</country>
<wicri:regionArea>Monterrey</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Alrayees, Zulfa" sort="Alrayees, Zulfa" uniqKey="Alrayees Z" first="Zulfa" last="Alrayees">Zulfa Alrayees</name>
<affiliation wicri:level="1">
<nlm:aff id="Aff12">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.415696.9</institution-id>
<institution></institution>
<institution>Ministry of Health,</institution>
</institution-wrap>
Riyadh, Saudi Arabia</nlm:aff>
<country xml:lang="fr">Arabie saoudite</country>
<wicri:regionArea>Riyadh</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Manja, Veena" sort="Manja, Veena" uniqKey="Manja V" first="Veena" last="Manja">Veena Manja</name>
<affiliation wicri:level="2">
<nlm:aff id="Aff13">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.416805.e</institution-id>
<institution>Division of Cardiology, Department of Medicine,</institution>
<institution>Veterans Affairs Medical Center,</institution>
</institution-wrap>
Buffalo, NY USA</nlm:aff>
<country>États-Unis</country>
<placeName>
<region type="state">État de New York</region>
</placeName>
<wicri:cityArea>Buffalo</wicri:cityArea>
</affiliation>
<affiliation wicri:level="2">
<nlm:aff id="Aff14">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.273335.3</institution-id>
<institution>Department of Internal Medicine,</institution>
<institution>University at Buffalo, the State University of New York,</institution>
</institution-wrap>
Buffalo, NY USA</nlm:aff>
<country>États-Unis</country>
<placeName>
<region type="state">État de New York</region>
</placeName>
<wicri:cityArea>Buffalo</wicri:cityArea>
</affiliation>
</author>
<author>
<name sortKey="Falavigna, Maicon" sort="Falavigna, Maicon" uniqKey="Falavigna M" first="Maicon" last="Falavigna">Maicon Falavigna</name>
<affiliation wicri:level="1">
<nlm:aff id="Aff15">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.414856.a</institution-id>
<institution></institution>
<institution>Hospital Moinhos de Vento,</institution>
</institution-wrap>
Porto Alegre, Brazil</nlm:aff>
<country xml:lang="fr">Brésil</country>
<wicri:regionArea>Porto Alegre</wicri:regionArea>
</affiliation>
<affiliation wicri:level="1">
<nlm:aff id="Aff16">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.8532.c</institution-id>
<institution>National Institute of Science and Technology for Health Technology Assessment,</institution>
<institution>Federal University of Rio Grande do Sul,</institution>
</institution-wrap>
Porto Alegre, Brazil</nlm:aff>
<country xml:lang="fr">Brésil</country>
<wicri:regionArea>Porto Alegre</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Neumann, Ignacio" sort="Neumann, Ignacio" uniqKey="Neumann I" first="Ignacio" last="Neumann">Ignacio Neumann</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
<affiliation wicri:level="1">
<nlm:aff id="Aff17">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.7870.8</institution-id>
<institution>Department of Internal Medicine,</institution>
<institution>Pontificia Universidad Católica de Chile,</institution>
</institution-wrap>
Santiago, Chile</nlm:aff>
<country xml:lang="fr">Chili</country>
<wicri:regionArea>Santiago</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Brignardello Petersen, Romina" sort="Brignardello Petersen, Romina" uniqKey="Brignardello Petersen R" first="Romina" last="Brignardello-Petersen">Romina Brignardello-Petersen</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
<affiliation wicri:level="1">
<nlm:aff id="Aff7">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.443909.3</institution-id>
<institution>Evidence-Based Dentistry Unit, Faculty of Dentistry,</institution>
<institution>Universidad de Chile,</institution>
</institution-wrap>
Santiago, Chile</nlm:aff>
<country xml:lang="fr">Chili</country>
<wicri:regionArea>Santiago</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Santesso, Nancy" sort="Santesso, Nancy" uniqKey="Santesso N" first="Nancy" last="Santesso">Nancy Santesso</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
</author>
<author>
<name sortKey="Rochwerg, Bram" sort="Rochwerg, Bram" uniqKey="Rochwerg B" first="Bram" last="Rochwerg">Bram Rochwerg</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
<affiliation wicri:level="1">
<nlm:aff id="Aff3">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Medicine,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
Hamilton, Canada</nlm:aff>
<country xml:lang="fr">Canada</country>
<wicri:regionArea>Hamilton</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Darzi, Andrea" sort="Darzi, Andrea" uniqKey="Darzi A" first="Andrea" last="Darzi">Andrea Darzi</name>
<affiliation wicri:level="1">
<nlm:aff id="Aff4">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.22903.3a</institution-id>
<institution>Department of Internal Medicine,</institution>
<institution>Faculty of Health Sciences, American University of Beirut,</institution>
</institution-wrap>
Beirut, Lebanon</nlm:aff>
<country xml:lang="fr">Liban</country>
<wicri:regionArea>Beirut</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Rojas, Maria Ximena" sort="Rojas, Maria Ximena" uniqKey="Rojas M" first="Maria Ximena" last="Rojas">Maria Ximena Rojas</name>
<affiliation wicri:level="1">
<nlm:aff id="Aff18">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.41312.35</institution-id>
<institution>Department of Clinical Epidemiology and Biostatistics,</institution>
<institution>Pontificia Universidad Javeriana,</institution>
</institution-wrap>
Bogotá, Colombia</nlm:aff>
<country xml:lang="fr">Colombie</country>
<wicri:regionArea>Bogotá</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Adi, Yaser" sort="Adi, Yaser" uniqKey="Adi Y" first="Yaser" last="Adi">Yaser Adi</name>
<affiliation wicri:level="1">
<nlm:aff id="Aff19">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.415310.2</institution-id>
<institution></institution>
<institution>King Faisal Specialist Hospital and Research Centre,</institution>
</institution-wrap>
Riyadh, Saudi Arabia</nlm:aff>
<country xml:lang="fr">Arabie saoudite</country>
<wicri:regionArea>Riyadh</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Bollig, Claudia" sort="Bollig, Claudia" uniqKey="Bollig C" first="Claudia" last="Bollig">Claudia Bollig</name>
<affiliation wicri:level="1">
<nlm:aff id="Aff5">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.5963.9</institution-id>
<institution>Cochrane Germany, Medical Center - University of Freiburg, Faculty of Medicine,</institution>
<institution>University of Freiburg,</institution>
</institution-wrap>
Freiburg, Germany</nlm:aff>
<country xml:lang="fr">Allemagne</country>
<wicri:regionArea>Freiburg</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Waziry, Reem" sort="Waziry, Reem" uniqKey="Waziry R" first="Reem" last="Waziry">Reem Waziry</name>
<affiliation wicri:level="1">
<nlm:aff id="Aff4">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.22903.3a</institution-id>
<institution>Department of Internal Medicine,</institution>
<institution>Faculty of Health Sciences, American University of Beirut,</institution>
</institution-wrap>
Beirut, Lebanon</nlm:aff>
<country xml:lang="fr">Liban</country>
<wicri:regionArea>Beirut</wicri:regionArea>
</affiliation>
<affiliation wicri:level="1">
<nlm:aff id="Aff20">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.1005.4</institution-id>
<institution>The Kirby Institute,</institution>
<institution>University of New South Wales,</institution>
</institution-wrap>
New South Wales, Australia</nlm:aff>
<country xml:lang="fr">Australie</country>
<wicri:regionArea>New South Wales</wicri:regionArea>
</affiliation>
</author>
<author>
<name sortKey="Schunemann, Holger J" sort="Schunemann, Holger J" uniqKey="Schunemann H" first="Holger J." last="Schünemann">Holger J. Schünemann</name>
<affiliation>
<nlm:aff id="Aff1">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Health Research Methods, Evidence and Impact,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
1280 Main Street West, Hamilton, ON L8S 4K1 Canada</nlm:aff>
<wicri:noCountry code="subfield">ON L8S 4K1 Canada</wicri:noCountry>
</affiliation>
<affiliation wicri:level="1">
<nlm:aff id="Aff3">
<institution-wrap>
<institution-id institution-id-type="GRID">grid.25073.33</institution-id>
<institution>Department of Medicine,</institution>
<institution>McMaster University,</institution>
</institution-wrap>
Hamilton, Canada</nlm:aff>
<country xml:lang="fr">Canada</country>
<wicri:regionArea>Hamilton</wicri:regionArea>
</affiliation>
</author>
</analytic>
<series>
<title level="j">Health and Quality of Life Outcomes</title>
<idno type="eISSN">1477-7525</idno>
<imprint>
<date when="2017">2017</date>
</imprint>
</series>
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<textClass>
<keywords scheme="KwdEn" xml:lang="en">
<term>Evidence-Based Medicine (methods)</term>
<term>Humans</term>
<term>Outcome Assessment (Health Care) (standards)</term>
<term>Patient Preference (psychology)</term>
<term>Practice Guidelines as Topic (standards)</term>
<term>Quality of Life</term>
<term>Saudi Arabia</term>
<term>Social Values</term>
</keywords>
<keywords scheme="KwdFr" xml:lang="fr">
<term>Arabie saoudite</term>
<term>Guides de bonnes pratiques cliniques comme sujet (normes)</term>
<term>Humains</term>
<term>Médecine factuelle ()</term>
<term>Préférence du patient (psychologie)</term>
<term>Qualité de vie</term>
<term>Valeurs sociales</term>
<term>Évaluation de résultat (soins) (normes)</term>
</keywords>
<keywords scheme="MESH" qualifier="methods" xml:lang="en">
<term>Evidence-Based Medicine</term>
</keywords>
<keywords scheme="MESH" qualifier="normes" xml:lang="fr">
<term>Guides de bonnes pratiques cliniques comme sujet</term>
<term>Évaluation de résultat (soins)</term>
</keywords>
<keywords scheme="MESH" qualifier="psychologie" xml:lang="fr">
<term>Préférence du patient</term>
</keywords>
<keywords scheme="MESH" qualifier="psychology" xml:lang="en">
<term>Patient Preference</term>
</keywords>
<keywords scheme="MESH" qualifier="standards" xml:lang="en">
<term>Outcome Assessment (Health Care)</term>
<term>Practice Guidelines as Topic</term>
</keywords>
<keywords scheme="MESH" xml:lang="en">
<term>Humans</term>
<term>Quality of Life</term>
<term>Saudi Arabia</term>
<term>Social Values</term>
</keywords>
<keywords scheme="MESH" xml:lang="fr">
<term>Arabie saoudite</term>
<term>Humains</term>
<term>Médecine factuelle</term>
<term>Qualité de vie</term>
<term>Valeurs sociales</term>
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<front>
<div type="abstract" xml:lang="en">
<sec>
<title>Background</title>
<p>There are diverse opinions and confusion about defining and including patient values and preferences (i.e. the importance people place on the health outcomes) in the guideline development processes. This article aims to provide an overview of a process for systematically incorporating values and preferences in guideline development.</p>
</sec>
<sec>
<title>Methods</title>
<p>In 2013 and 2014, we followed the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach to adopt, adapt and develop 226 recommendations in 22 guidelines for the Ministry of Health of the Kingdom of Saudi Arabia. To collect context-specific values and preferences for each recommendation, we performed systematic reviews, asked clinical experts to provide feedback according to their clinical experience, and consulted patient representatives.</p>
</sec>
<sec>
<title>Results</title>
<p>We found several types of studies addressing the importance of outcomes, including those reporting utilities, non-utility measures of health states based on structured questionnaires or scales, and qualitative studies. Guideline panels used the relative importance of outcomes based on values and preferences to weigh the balance of desirable and undesirable consequences of alternative intervention options. However, we found few studies addressing local values and preferences.</p>
</sec>
<sec>
<title>Conclusions</title>
<p>Currently there are different but no firmly established processes for integrating patient values and preferences in healthcare decision-making of practice guideline development. With GRADE Evidence-to-Decision (EtD) frameworks, we provide an empirical strategy to find and incorporate values and preferences in guidelines by performing systematic reviews and eliciting information from guideline panel members and patient representatives. However, more research and practical guidance are needed on how to search for relevant studies and grey literature, assess the certainty of this evidence, and best summarize and present the findings.</p>
</sec>
<sec>
<title>Electronic supplementary material</title>
<p>The online version of this article (doi:10.1186/s12955-017-0621-0) contains supplementary material, which is available to authorized users.</p>
</sec>
</div>
</front>
<back>
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