Disclosing the Uncertainty Associated with Prognostic Estimates in Breast Cancer.

Ellen G. Engelhardt
Arwen H. Pieterse
Paul K.J. Han, Maine Medical Center
Nanny Van Duijn-Bakker
Frans Cluitmans
Ed Maartense
Monique M.E.M. Bos
Nir I. Weijl
Cornelis J.A. Punt
Patricia Quarles Van Ufford-Mannesse
Harm Sleeboom
Johanneke E.A. Portielje
Koos J.M. Van Der Hoeven
F.J. Sherida Woel-A-Jin
Judith R. Kroep
Janneke C.J.M. De Haes
Ellen M.A. Smets
Anne M. Stiggelbout


Background. Treatment decision making is often guided by evidence-based probabilities, which may be presented to patients during consultations. These probabilities are intrinsically imperfect and embody 2 types of uncertainties: aleatory uncertainty arising from the unpredictability of future events and epistemic uncertainty arising from limitations in the reliability and accuracy of probability estimates. Risk communication experts have recommended disclosing uncertainty. We examined whether uncertainty was discussed during cancer consultations and whether and how patients perceived uncertainty. Methods. Consecutive patient consultations with medical oncologists discussing adjuvant treatment in early-stage breast cancer were audiotaped, transcribed, and coded. Patients were interviewed after the consultation to gain insight into their perceptions of uncertainty. Results. In total, 198 patients were included by 27 oncologists. Uncertainty was disclosed in 49% (97/197) of consultations. In those 97 consultations, 23 allusions to epistemic uncertainty were made and 84 allusions to aleatory uncertainty. Overall, the allusions to the precision of the probabilities were somewhat ambiguous. Interviewed patients mainly referred to aleatory uncertainty if not prompted about epistemic uncertainty. Even when specifically asked about epistemic uncertainty, 1 in 4 utterances referred to aleatory uncertainty. When talking about epistemic uncertainty, many patients contradicted themselves. In addition, 1 in 10 patients seemed not to realize that the probabilities communicated during the consultation are imperfect. Conclusions. Uncertainty is conveyed in only half of patient consultations. When uncertainty is communicated, oncologists mainly refer to aleatory uncertainty. This is also the type of uncertainty that most patients perceive and seem comfortable discussing. Given that it is increasingly common for clinicians to discuss outcome probabilities with their patients, guidance on whether and how to best communicate uncertainty is urgently needed.