5M-2
HOW IS UNCERTAINTY IN RISKS AND BENEFITS PRESENTED IN PATIENT DECISION SUPPORT INTERVENTIONS? A REVIEW
Effective communication of the uncertainty surrounding the expected benefits and harms of medical interventions is an important aspect of informed decision making. Patient decision support interventions (PDSI) aim to improve patients’ knowledge and yield medical choices more aligned with patients’ preferences. The International Patient Decision Aid Standards (IPDAS) group, which aims to provide criteria for improving decision aids, recommend that uncertainty in evidence be described. This study sought to understand how uncertainty is being described in PDSIs.
Method:
We reviewed all uncertainty statements around risks and benefits within all of the PDSIs available in three registries (Ottawa Hospital Research Institute, Choosing Wisely, Option Grid Collaborative). We developed a framework by which we could classify these statements by their presentation of first (the randomness of future events (i.e. the risk)) and second order uncertainty (the imprecision in risk estimates). All statements were extracted and classified by two reviewers (MB, LS), any discrepancies were arbitrated by a third reviewer (MH or NB).
Result:
461 decision aids were identified and included in the review. The decision aids we reviewed ranged in the number of options they presented to people (2 to 16), and in the number of harms (0 to 31) and benefits (0 to 16) that they included. The number of harms described outweighed the benefits. We identified 8729 statements as describing an uncertain risk or benefit. The predominant method of presenting both first order and second order uncertainty was qualitative, but the majority of statements did not convey second order uncertainty. When first and second order uncertainty was combined there were many different ways (n=26) of describing uncertainty.
Conclusion:
There is considerable heterogeneity in the methods that PDSI developers are using to convey uncertainty around risks and benefits to patients to support shared decision making. This heterogeneity is a product of a lack of evidence about how best to communicate risk and uncertainty to patients. There is an urgent need for more research into the evaluation of methods for communicating uncertainty to patients and its impact on patient preferences.