Examining Notions of Uncertainty in the Healthcare Setting: A Qualitative Study

Abstract

Background: Shared decision-making relies on the premise that individuals are well-informed regarding the benefits and harms of all available treatment options before coming to a decision regarding their healthcare. There is often significant aleatory and epistemic uncertainty associated with proposed risks and benefits, but prior studies have demonstrated that uncertainty is rarely communicated in provider-patient interactions. Additionally, there has been conflicting evidence regarding the use of visual aids as a method to improve understanding of uncertainty.Methods: We conducted a qualitative, think-aloud study to examine how individuals understand uncertainty as it relates to the probability of medication risks and benefits. We used a within-subjects design and presented individuals with two hypothetical medications after which they received either no additional information, an icon array, or a spinner. We performed individual in-depth interviews following a semi-structured interview guide. Transcripts were analyzed using the constant comparative method of grounded theory.Results: We reached thematic saturation after 20 patient interviews. The participants’ mean (SD) age was 64.6 (18); 60% male, 84% were non-Hispanic Whites, 10% Blacks, and 60% had a college education or higher. Several themes regarding difficulties understanding uncertainty emerged: 1) Rejection of uncertainty; 2) Failure to distinguish between epistemic and aleatory uncertainty; 3) Difficulty distinguishing between different magnitudes of probabilities; 5) Reduction of uncertainty by manipulation of the scenario to eliminate choices. The use of visual aids did not appear to facilitate understanding of uncertainty in most cases.Conclusions: Providers must understand whether and how patients interpret probabilistic information in order to best communicate with them in the healthcare setting. Features such as “talk-back” should be used to ensure reasonable understanding of uncertainty during shared decision-making encounters.