A novel framework for incorporating patient values and preferences in making guideline recommendations: guideline panel surveys

• Published in: Journal of clinical epidemiology Vol. 161; pp. 164 - 172
• Main Authors: Zeng, Linan, Helsingen, Lise M., Bretthauer, Michael, Agoritsas, Thomas, Vandvik, Per O., Mustafa, Reem A., Busse, Jason, Siemieniuk, Reed A.C., Lytvyn, Lyubov, Li, Shelly-Anne, Yang, Mengting, Yan, Lijiao, Zhang, Lingli, Brignardello-Petersen, Romina, Guyatt, Gordon H.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.09.2023; Elsevier Limited
• Subjects: Cancer screening; Clinical medicine; Clinical practice guidelines; Colorectal cancer; Colorectal carcinoma; Colorectal Neoplasms - diagnosis; Colorectal Neoplasms - therapy; Consensus; Decision making; Educational films; Epidemiology; Framework; Guideline; Guidelines; Humans; Internal Medicine; Intervention; Medical screening; Methods; Panels; Patient preferences; Patients; Polls & surveys; Preferences; Survey; Surveys; Surveys and Questionnaires; Threshold; Patient preferences; Guideline; Survey; Framework; Methods; Threshold
• ISSN: 0895-4356; 1878-5921; 1878-5921
• DOI: 10.1016/j.jclinepi.2023.07.003

Universally acknowledged standards for trustworthy guidelines include the necessity to ground recommendations in patient values and preferences. When information is limited—which is typically the case—guideline panels often find it difficult to explicitly integrate patient values and preferences into their recommendations. Our objective was to develop and evaluate a framework for systematically navigating guideline panels in incorporating patient values and preferences in making recommendations. In the context of developing a guideline for colorectal cancer screening, we generated an initial framework for creating panel surveys to elicit guideline panelists’ views of patient values and preferences and to inform panel discussions on recommendations. With further applications in guidelines of diverse topic areas, we dynamically refined the framework through iterative discussions and consensus. The finial framework consists of five steps for creating and implementing panel surveys. The surveys can serve three objectives following from the quantitative information regarding patient values and preferences that guideline panels usually require. An accompanying video provides detailed instructions of the survey. The framework for creating and implementing panel surveys offers explicit guidance for guideline panels considering transparently and systematically incorporating patient values and preferences into guideline recommendations.