Background: Consideration of patients’ values and preferences is one of the main criteria for formulating guideline recommendations using the GRADE Evidence-to-Decision framework. A systematic review of the literature can provide research evidence to inform a panel’s decision making, but information about specific health outcomes is often lacking. Information about utilities provides a measure of the value that patients place on a health outcome.
Objective: To describe a survey approach to collect guideline panel members’ views and judgements about the utility of health outcomes considered in the development of a guideline.
Methods: In a guideline-development project to develop 10 American Society of Hematology venous thromboembolism guidelines, we conducted a survey of panel members, including patient representatives, to elicit utilities for prioritised health outcomes, in parallel with a systematic review of patients’ values and preferences. The online survey consisted of marker states to provide a description of each outcome, including the symptoms, time horizon, testing and treatment, and consequences. Panel members rated the utility of outcomes on a visual-analog scale from 0 (death) to 100 (full health). We summarised the utility ratings across guideline panels and compared them to research findings from the literature.
Results: Eighty-five panel members rated the utilities of 127 outcomes identified as critical or important for decision making in the 10 guidelines. The utilities for the majority of outcomes rated by the panel were not identified in the literature. For those identified in the literature there was overlap between the panels’ ratings and ranges described in research studies. The panel’s utility rating was used to supplement the research evidence for decision making, particularly when informing various health states of an outcome (e.g. mild, moderate, severe health states).
Conclusions: Utility rating in an online survey using marker-state descriptions and a visual-analog scale can be used as a feasible, structured approach by panels to supplement evidence reported in literature and consider the value placed on health outcomes.