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

doi:10.1186/s12955-017-0621-0

Review

. 2017 May 2;15(1):52.

doi: 10.1186/s12955-017-0621-0.

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

Yuan Zhang¹, Pablo Alonso Coello^{1

2}, Jan Brożek^{1

3}, Wojtek Wiercioch¹, Itziar Etxeandia-Ikobaltzeta¹, Elie A Akl^{1

4}, Joerg J Meerpohl^{5

6}, Waleed Alhazzani^{1

3}, Alonso Carrasco-Labra^{1

7}, Rebecca L Morgan¹, Reem A Mustafa^{1

8}, John J Riva^{1

9}, Ainsley Moore^{1

9}, Juan José Yepes-Nuñez^{1

10}, Carlos Cuello-Garcia^{1

11}, Zulfa AlRayees¹², Veena Manja^{13

14}, Maicon Falavigna^{15

16}, Ignacio Neumann^{1

17}, Romina Brignardello-Petersen^{1

7}, Nancy Santesso¹, Bram Rochwerg^{1

3}, Andrea Darzi⁴, Maria Ximena Rojas¹⁸, Yaser Adi¹⁹, Claudia Bollig⁵, Reem Waziry^{4

20}, Holger J Schünemann^{21

22}

Affiliations

¹ Department of Health Research Methods, Evidence and Impact, McMaster University, 1280 Main Street West, Hamilton, ON, L8S 4K1, Canada.
² Iberoamerican Cochrane Centre, CIBERESP-IIB Sant Pau, Barcelona, Spain.
³ Department of Medicine, McMaster University, Hamilton, Canada.
⁴ Department of Internal Medicine, Faculty of Health Sciences, American University of Beirut, Beirut, Lebanon.
⁵ Cochrane Germany, Medical Center - University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany.
⁶ Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité - U1153, Inserm/Université Paris Descartes, Cochrane France, Hôpital Hôtel-Dieu, 1 place du Parvis Notre Dame, 75181, Paris, Cedex 04, France.
⁷ Evidence-Based Dentistry Unit, Faculty of Dentistry, Universidad de Chile, Santiago, Chile.
⁸ Departments of Internal Medicine/Nephrology and Biomedical and Health Informatics, University of Missouri-Kansas City, Kansas City, MO, USA.
⁹ Department of Family Medicine, McMaster University, David Braley Health Sciences Centre, 100 Main Street West, 6th Floor, Hamilton, ON, L8P 1H6, Canada.
¹⁰ School of Medicine, University of Antioquia, Medellín, Colombia.
¹¹ Tecnologico de Monterrey School of Medicine, Monterrey, Mexico.
¹² Ministry of Health, Riyadh, Saudi Arabia.
¹³ Division of Cardiology, Department of Medicine, Veterans Affairs Medical Center, Buffalo, NY, USA.
¹⁴ Department of Internal Medicine, University at Buffalo, the State University of New York, Buffalo, NY, USA.
¹⁵ Hospital Moinhos de Vento, Porto Alegre, Brazil.
¹⁶ National Institute of Science and Technology for Health Technology Assessment, Federal University of Rio Grande do Sul, Porto Alegre, Brazil.
¹⁷ Department of Internal Medicine, Pontificia Universidad Católica de Chile, Santiago, Chile.
¹⁸ Department of Clinical Epidemiology and Biostatistics, Pontificia Universidad Javeriana, Bogotá, Colombia.
¹⁹ King Faisal Specialist Hospital and Research Centre, Riyadh, Saudi Arabia.
²⁰ The Kirby Institute, University of New South Wales, New South Wales, Australia.
²¹ Department of Health Research Methods, Evidence and Impact, McMaster University, 1280 Main Street West, Hamilton, ON, L8S 4K1, Canada. schuneh@mcmaster.ca.
²² Department of Medicine, McMaster University, Hamilton, Canada. schuneh@mcmaster.ca.

PMID: 28460638
PMCID: PMC5412036
DOI: 10.1186/s12955-017-0621-0

Review

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

Yuan Zhang et al. Health Qual Life Outcomes. 2017.

. 2017 May 2;15(1):52.

doi: 10.1186/s12955-017-0621-0.

Authors

Affiliations

¹ Department of Health Research Methods, Evidence and Impact, McMaster University, 1280 Main Street West, Hamilton, ON, L8S 4K1, Canada.
² Iberoamerican Cochrane Centre, CIBERESP-IIB Sant Pau, Barcelona, Spain.
³ Department of Medicine, McMaster University, Hamilton, Canada.
⁴ Department of Internal Medicine, Faculty of Health Sciences, American University of Beirut, Beirut, Lebanon.
⁵ Cochrane Germany, Medical Center - University of Freiburg, Faculty of Medicine, University of Freiburg, Freiburg, Germany.
⁶ Centre de Recherche Épidémiologie et Statistique Sorbonne Paris Cité - U1153, Inserm/Université Paris Descartes, Cochrane France, Hôpital Hôtel-Dieu, 1 place du Parvis Notre Dame, 75181, Paris, Cedex 04, France.
⁷ Evidence-Based Dentistry Unit, Faculty of Dentistry, Universidad de Chile, Santiago, Chile.
⁸ Departments of Internal Medicine/Nephrology and Biomedical and Health Informatics, University of Missouri-Kansas City, Kansas City, MO, USA.
⁹ Department of Family Medicine, McMaster University, David Braley Health Sciences Centre, 100 Main Street West, 6th Floor, Hamilton, ON, L8P 1H6, Canada.
¹⁰ School of Medicine, University of Antioquia, Medellín, Colombia.
¹¹ Tecnologico de Monterrey School of Medicine, Monterrey, Mexico.
¹² Ministry of Health, Riyadh, Saudi Arabia.
¹³ Division of Cardiology, Department of Medicine, Veterans Affairs Medical Center, Buffalo, NY, USA.
¹⁴ Department of Internal Medicine, University at Buffalo, the State University of New York, Buffalo, NY, USA.
¹⁵ Hospital Moinhos de Vento, Porto Alegre, Brazil.
¹⁶ National Institute of Science and Technology for Health Technology Assessment, Federal University of Rio Grande do Sul, Porto Alegre, Brazil.
¹⁷ Department of Internal Medicine, Pontificia Universidad Católica de Chile, Santiago, Chile.
¹⁸ Department of Clinical Epidemiology and Biostatistics, Pontificia Universidad Javeriana, Bogotá, Colombia.
¹⁹ King Faisal Specialist Hospital and Research Centre, Riyadh, Saudi Arabia.
²⁰ The Kirby Institute, University of New South Wales, New South Wales, Australia.
²¹ Department of Health Research Methods, Evidence and Impact, McMaster University, 1280 Main Street West, Hamilton, ON, L8S 4K1, Canada. schuneh@mcmaster.ca.
²² Department of Medicine, McMaster University, Hamilton, Canada. schuneh@mcmaster.ca.

PMID: 28460638
PMCID: PMC5412036
DOI: 10.1186/s12955-017-0621-0

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.

Keywords: Evidence to decision; Guideline development; Outcome importance; Patient preferences; Patient values; Systematic review.

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Figures

**Fig. 1**
Process of Integrating Values and Preferences. The steps on the left show the process of integrating values and preferences in guideline development. The guideline panel formulated the recommendations based on evidence on values and preferences, together with other evidence, e.g., evidence on the balance between benefits and harms and cost

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References

1. World Health Organization . WHO Handbook for Guideline Development. 2. Switzerland: World Health Organization; 2014.
1. Guyatt GH, Oxman AD, Vist GE, Kunz R, Falck-Ytter Y, Alonso-Coello P, Schunemann HJ. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ. 2008;336:924–926. doi: 10.1136/bmj.39489.470347.AD. - DOI - PMC - PubMed
1. Schunemann HJ, Wiercioch W, Etxeandia I, Falavigna M, Santesso N, Mustafa R, Ventresca M, Brignardello-Petersen R, Laisaar KT, Kowalski S, et al. Guidelines 2.0: systematic development of a comprehensive checklist for a successful guideline enterprise. CMAJ. 2014;186:E123–142. doi: 10.1503/cmaj.131237. - DOI - PMC - PubMed
1. Schunemann HJ, Mustafa R, Brozek J, Santesso N, Alonso-Coello P, Guyatt G, Scholten R, Langendam M, Leeflang MM, Akl EA, et al. Development of the GRADE Evidence to Decision (EtD) frameworks for tests in clinical practice and public health. J Clin Epidemiol. 2016;76:89-98. doi: 10.1016/j.jclinepi.2016.01.032. - PubMed
1. Alonso-Coello P, Schünemann HJ, Moberg J, Brignardello-Petersen R, Akl EA, Davoli M, Treweek S, Mustafa RA, Rada G, Rosenbaum S, et al. GRADE Evidence to Decision (EtD) frameworks: a systematic and transparent approach to making well informed healthcare choices. 1: Introduction. BMJ. 2016;353:i2016. - PubMed

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[1] World Health Organization . WHO Handbook for Guideline Development. 2. Switzerland: World Health Organization; 2014.

[2] World Health Organization . WHO Handbook for Guideline Development. 2. Switzerland: World Health Organization; 2014.

[3] Guyatt GH, Oxman AD, Vist GE, Kunz R, Falck-Ytter Y, Alonso-Coello P, Schunemann HJ. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ. 2008;336:924–926. doi: 10.1136/bmj.39489.470347.AD. - DOI - PMC - PubMed

[4] Guyatt GH, Oxman AD, Vist GE, Kunz R, Falck-Ytter Y, Alonso-Coello P, Schunemann HJ. GRADE: an emerging consensus on rating quality of evidence and strength of recommendations. BMJ. 2008;336:924–926. doi: 10.1136/bmj.39489.470347.AD. - DOI - PMC - PubMed

[5] Schunemann HJ, Wiercioch W, Etxeandia I, Falavigna M, Santesso N, Mustafa R, Ventresca M, Brignardello-Petersen R, Laisaar KT, Kowalski S, et al. Guidelines 2.0: systematic development of a comprehensive checklist for a successful guideline enterprise. CMAJ. 2014;186:E123–142. doi: 10.1503/cmaj.131237. - DOI - PMC - PubMed

[6] Schunemann HJ, Wiercioch W, Etxeandia I, Falavigna M, Santesso N, Mustafa R, Ventresca M, Brignardello-Petersen R, Laisaar KT, Kowalski S, et al. Guidelines 2.0: systematic development of a comprehensive checklist for a successful guideline enterprise. CMAJ. 2014;186:E123–142. doi: 10.1503/cmaj.131237. - DOI - PMC - PubMed

[7] Schunemann HJ, Mustafa R, Brozek J, Santesso N, Alonso-Coello P, Guyatt G, Scholten R, Langendam M, Leeflang MM, Akl EA, et al. Development of the GRADE Evidence to Decision (EtD) frameworks for tests in clinical practice and public health. J Clin Epidemiol. 2016;76:89-98. doi: 10.1016/j.jclinepi.2016.01.032. - PubMed

[8] Schunemann HJ, Mustafa R, Brozek J, Santesso N, Alonso-Coello P, Guyatt G, Scholten R, Langendam M, Leeflang MM, Akl EA, et al. Development of the GRADE Evidence to Decision (EtD) frameworks for tests in clinical practice and public health. J Clin Epidemiol. 2016;76:89-98. doi: 10.1016/j.jclinepi.2016.01.032. - PubMed

[9] Alonso-Coello P, Schünemann HJ, Moberg J, Brignardello-Petersen R, Akl EA, Davoli M, Treweek S, Mustafa RA, Rada G, Rosenbaum S, et al. GRADE Evidence to Decision (EtD) frameworks: a systematic and transparent approach to making well informed healthcare choices. 1: Introduction. BMJ. 2016;353:i2016. - PubMed

[10] Alonso-Coello P, Schünemann HJ, Moberg J, Brignardello-Petersen R, Akl EA, Davoli M, Treweek S, Mustafa RA, Rada G, Rosenbaum S, et al. GRADE Evidence to Decision (EtD) frameworks: a systematic and transparent approach to making well informed healthcare choices. 1: Introduction. BMJ. 2016;353:i2016. - PubMed

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

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

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