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

Yuan Zhang, Pablo Alonso Coello, Jan Brożek, Wojtek Wiercioch, Itziar Etxeandia-Ikobaltzeta, Elie A. Akl, Joerg J. Meerpohl, Waleed Alhazzani, Alonso Carrasco-Labra, Rebecca L. Morgan, Reem A. Mustafa, John J. Riva, Ainsley Moore, Juan José Yepes-Nuñez, Carlos Cuello-Garcia, Zulfa AlRayees, Veena Manja, Maicon Falavigna, Ignacio Neumann, Romina Brignardello-Petersen, Nancy Santesso, Bram Rochwerg, Andrea Darzi, Maria Ximena Rojas, Yaser Adi, Claudia Bollig, Reem Waziry, Holger J. Schünemann

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. 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. 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. 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.