Disclosing the Uncertainty Associated with Prognostic Estimates in Breast Cancer.
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.



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.



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.



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.
Department of Medical Decision Making, Leiden University Medical Center, Leiden, the Netherlands (EGE, AHP, NvD, AMS).
Ellen G
EG
Engelhardt
Department of Medical Decision Making, Leiden University Medical Center, Leiden, the Netherlands (EGE, AHP, NvD, AMS).
Arwen H
AH
Pieterse
Center for Outcomes Research and Evaluation, Maine Medical Center, Portland, ME (PKJH).
Paul K J
PK
Han
Department of Medical Decision Making, Leiden University Medical Center, Leiden, the Netherlands (EGE, AHP, NvD, AMS).
Nanny
N
van Duijn-Bakker
Department of Oncology, Alrijne Hospital, Leiderdorp, the Netherlands (FC).
Frans
F
Cluitmans
Department of Oncology, Reinier de Graaf Hospital, Delft, the Netherlands (ED, MMEMB).
Ed
E
Maartense
Department of Oncology, Reinier de Graaf Hospital, Delft, the Netherlands (ED, MMEMB).
Monique M E M
MM
Bos
Department of Internal Medicine and Oncology, MCH Bronovo Hospital, The Hague, the Netherlands (NIW).
Nir I
NI
Weijl
Department of Medical Oncology, Academic Medical Center, Amsterdam, the Netherlands (CJAP).
Cornelis J A
CJ
Punt
Department of Oncology, HAGA Hospital, The Hague, the Netherlands (PQvU-M, HS, JEAP).
Patricia
P
Quarles van Ufford-Mannesse
Department of Oncology, HAGA Hospital, The Hague, the Netherlands (PQvU-M, HS, JEAP).
Harm
H
Sleeboom
Department of Oncology, HAGA Hospital, The Hague, the Netherlands (PQvU-M, HS, JEAP).
Johanneke E A
JE
Portielje
Department of Clinical Oncology, Leiden University Medical Center, Leiden, the Netherlands (KJMvdH, FJSW-A-J, JRK).
Koos J M
KJ
van der Hoeven
Department of Clinical Oncology, Leiden University Medical Center, Leiden, the Netherlands (KJMvdH, FJSW-A-J, JRK).
F J Sherida
FJ
Woei-A-Jin
Department of Clinical Oncology, Leiden University Medical Center, Leiden, the Netherlands (KJMvdH, FJSW-A-J, JRK).
Judith R
JR
Kroep
Department of Medical Psychology, Academic Medical Center, Amsterdam, the Netherlands (HCJMdH, EMAS).
Hanneke C J M
HC
de Haes
Department of Medical Psychology, Academic Medical Center, Amsterdam, the Netherlands (HCJMdH, EMAS).
Ellen M A
EM
Smets
Department of Medical Decision Making, Leiden University Medical Center, Leiden, the Netherlands (EGE, AHP, NvD, AMS).
Anne M
AM
Stiggelbout
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001943:Breast Neoplasms / Q000175:diagnosis* / Q000473:pathology / Q000523:psychology* / Q000628:therapy; D003142:Communication; D003657:Decision Making; D005260:Female; D006801:Humans; D008495:Medical Oncology; D008875:Middle Aged; D009367:Neoplasm Staging; D010465:Perception; D011336:Probability; D011379:Prognosis; D015203:Reproducibility of Results; D012959:Socioeconomic Factors; D035501:Uncertainty; D016387:Women's Health
breast cancer; chemotherapy; decision making; endocrine therapy; risk communication; uncertainty