Disclosing the Uncertainty Associated with Prognostic Estimates in Breast Cancer
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...
Ausführliche Beschreibung
Gespeichert in:
| Autor*in: |
Engelhardt, Ellen G [verfasserIn] |
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| Format: |
Artikel |
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| Sprache: |
Englisch |
| Erschienen: |
2017 |
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| Rechteinformationen: |
Nutzungsrecht: © The Author(s) 2016 |
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| Übergeordnetes Werk: |
Enthalten in: Medical decision making - Thousand Oaks, Calif. : Sage, 1981, 37(2017), 3, Seite 179-192 |
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| Übergeordnetes Werk: |
volume:37 ; year:2017 ; number:3 ; pages:179-192 |
| Links: |
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| DOI / URN: |
10.1177/0272989X16670639 |
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OLC1993644857 |
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| 520 | |a 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. | ||
| 540 | |a Nutzungsrecht: © The Author(s) 2016 | ||
| 700 | 1 | |a Pieterse, Arwen H |4 oth | |
| 700 | 1 | |a Han, Paul K. J |4 oth | |
| 700 | 1 | |a van Duijn-Bakker, Nanny |4 oth | |
| 700 | 1 | |a Cluitmans, Frans |4 oth | |
| 700 | 1 | |a Maartense, Ed |4 oth | |
| 700 | 1 | |a Bos, Monique M. E. M |4 oth | |
| 700 | 1 | |a Weijl, Nir I |4 oth | |
| 700 | 1 | |a Punt, Cornelis J. A |4 oth | |
| 700 | 1 | |a Quarles van Ufford-Mannesse, Patricia |4 oth | |
| 700 | 1 | |a Sleeboom, Harm |4 oth | |
| 700 | 1 | |a Portielje, Johanneke E. A |4 oth | |
| 700 | 1 | |a van der Hoeven, Koos J. M |4 oth | |
| 700 | 1 | |a Woei-A-Jin, F. J. Sherida |4 oth | |
| 700 | 1 | |a Kroep, Judith R |4 oth | |
| 700 | 1 | |a de Haes, Hanneke C. J. M |4 oth | |
| 700 | 1 | |a Smets, Ellen M. A |4 oth | |
| 700 | 1 | |a Stiggelbout, Anne M |4 oth | |
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10.1177/0272989X16670639 doi PQ20170721 (DE-627)OLC1993644857 (DE-599)GBVOLC1993644857 (PRQ)sage_journals_10_1177_0272989X166706390 (KEY)0569524420170000037000300179disclosingtheuncertaintyassociatedwithprognostices DE-627 ger DE-627 rakwb eng 610 DE-600 44.60 bkl 44.05 bkl Engelhardt, Ellen G verfasserin aut Disclosing the Uncertainty Associated with Prognostic Estimates in Breast Cancer 2017 Text txt rdacontent ohne Hilfsmittel zu benutzen n rdamedia Band nc rdacarrier 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. Nutzungsrecht: © The Author(s) 2016 Pieterse, Arwen H oth Han, Paul K. J oth van Duijn-Bakker, Nanny oth Cluitmans, Frans oth Maartense, Ed oth Bos, Monique M. E. M oth Weijl, Nir I oth Punt, Cornelis J. A oth Quarles van Ufford-Mannesse, Patricia oth Sleeboom, Harm oth Portielje, Johanneke E. A oth van der Hoeven, Koos J. M oth Woei-A-Jin, F. J. Sherida oth Kroep, Judith R oth de Haes, Hanneke C. J. M oth Smets, Ellen M. A oth Stiggelbout, Anne M oth Enthalten in Medical decision making Thousand Oaks, Calif. : Sage, 1981 37(2017), 3, Seite 179-192 (DE-627)130398683 (DE-600)604497-9 (DE-576)01590198X 0272-989X nnns volume:37 year:2017 number:3 pages:179-192 http://dx.doi.org/10.1177/0272989X16670639 Volltext http://journals.sagepub.com/doi/full/10.1177/0272989X16670639 GBV_USEFLAG_A SYSFLAG_A GBV_OLC SSG-OLC-WIW SSG-OLC-PHA SSG-OLC-DE-84 GBV_ILN_26 GBV_ILN_4219 44.60 AVZ 44.05 AVZ AR 37 2017 3 179-192 |
| spelling |
10.1177/0272989X16670639 doi PQ20170721 (DE-627)OLC1993644857 (DE-599)GBVOLC1993644857 (PRQ)sage_journals_10_1177_0272989X166706390 (KEY)0569524420170000037000300179disclosingtheuncertaintyassociatedwithprognostices DE-627 ger DE-627 rakwb eng 610 DE-600 44.60 bkl 44.05 bkl Engelhardt, Ellen G verfasserin aut Disclosing the Uncertainty Associated with Prognostic Estimates in Breast Cancer 2017 Text txt rdacontent ohne Hilfsmittel zu benutzen n rdamedia Band nc rdacarrier 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. Nutzungsrecht: © The Author(s) 2016 Pieterse, Arwen H oth Han, Paul K. J oth van Duijn-Bakker, Nanny oth Cluitmans, Frans oth Maartense, Ed oth Bos, Monique M. E. M oth Weijl, Nir I oth Punt, Cornelis J. A oth Quarles van Ufford-Mannesse, Patricia oth Sleeboom, Harm oth Portielje, Johanneke E. A oth van der Hoeven, Koos J. M oth Woei-A-Jin, F. J. Sherida oth Kroep, Judith R oth de Haes, Hanneke C. J. M oth Smets, Ellen M. A oth Stiggelbout, Anne M oth Enthalten in Medical decision making Thousand Oaks, Calif. : Sage, 1981 37(2017), 3, Seite 179-192 (DE-627)130398683 (DE-600)604497-9 (DE-576)01590198X 0272-989X nnns volume:37 year:2017 number:3 pages:179-192 http://dx.doi.org/10.1177/0272989X16670639 Volltext http://journals.sagepub.com/doi/full/10.1177/0272989X16670639 GBV_USEFLAG_A SYSFLAG_A GBV_OLC SSG-OLC-WIW SSG-OLC-PHA SSG-OLC-DE-84 GBV_ILN_26 GBV_ILN_4219 44.60 AVZ 44.05 AVZ AR 37 2017 3 179-192 |
| allfields_unstemmed |
10.1177/0272989X16670639 doi PQ20170721 (DE-627)OLC1993644857 (DE-599)GBVOLC1993644857 (PRQ)sage_journals_10_1177_0272989X166706390 (KEY)0569524420170000037000300179disclosingtheuncertaintyassociatedwithprognostices DE-627 ger DE-627 rakwb eng 610 DE-600 44.60 bkl 44.05 bkl Engelhardt, Ellen G verfasserin aut Disclosing the Uncertainty Associated with Prognostic Estimates in Breast Cancer 2017 Text txt rdacontent ohne Hilfsmittel zu benutzen n rdamedia Band nc rdacarrier 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. Nutzungsrecht: © The Author(s) 2016 Pieterse, Arwen H oth Han, Paul K. J oth van Duijn-Bakker, Nanny oth Cluitmans, Frans oth Maartense, Ed oth Bos, Monique M. E. M oth Weijl, Nir I oth Punt, Cornelis J. A oth Quarles van Ufford-Mannesse, Patricia oth Sleeboom, Harm oth Portielje, Johanneke E. A oth van der Hoeven, Koos J. M oth Woei-A-Jin, F. J. Sherida oth Kroep, Judith R oth de Haes, Hanneke C. J. M oth Smets, Ellen M. A oth Stiggelbout, Anne M oth Enthalten in Medical decision making Thousand Oaks, Calif. : Sage, 1981 37(2017), 3, Seite 179-192 (DE-627)130398683 (DE-600)604497-9 (DE-576)01590198X 0272-989X nnns volume:37 year:2017 number:3 pages:179-192 http://dx.doi.org/10.1177/0272989X16670639 Volltext http://journals.sagepub.com/doi/full/10.1177/0272989X16670639 GBV_USEFLAG_A SYSFLAG_A GBV_OLC SSG-OLC-WIW SSG-OLC-PHA SSG-OLC-DE-84 GBV_ILN_26 GBV_ILN_4219 44.60 AVZ 44.05 AVZ AR 37 2017 3 179-192 |
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10.1177/0272989X16670639 doi PQ20170721 (DE-627)OLC1993644857 (DE-599)GBVOLC1993644857 (PRQ)sage_journals_10_1177_0272989X166706390 (KEY)0569524420170000037000300179disclosingtheuncertaintyassociatedwithprognostices DE-627 ger DE-627 rakwb eng 610 DE-600 44.60 bkl 44.05 bkl Engelhardt, Ellen G verfasserin aut Disclosing the Uncertainty Associated with Prognostic Estimates in Breast Cancer 2017 Text txt rdacontent ohne Hilfsmittel zu benutzen n rdamedia Band nc rdacarrier 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. Nutzungsrecht: © The Author(s) 2016 Pieterse, Arwen H oth Han, Paul K. J oth van Duijn-Bakker, Nanny oth Cluitmans, Frans oth Maartense, Ed oth Bos, Monique M. E. M oth Weijl, Nir I oth Punt, Cornelis J. A oth Quarles van Ufford-Mannesse, Patricia oth Sleeboom, Harm oth Portielje, Johanneke E. A oth van der Hoeven, Koos J. M oth Woei-A-Jin, F. J. Sherida oth Kroep, Judith R oth de Haes, Hanneke C. J. M oth Smets, Ellen M. A oth Stiggelbout, Anne M oth Enthalten in Medical decision making Thousand Oaks, Calif. : Sage, 1981 37(2017), 3, Seite 179-192 (DE-627)130398683 (DE-600)604497-9 (DE-576)01590198X 0272-989X nnns volume:37 year:2017 number:3 pages:179-192 http://dx.doi.org/10.1177/0272989X16670639 Volltext http://journals.sagepub.com/doi/full/10.1177/0272989X16670639 GBV_USEFLAG_A SYSFLAG_A GBV_OLC SSG-OLC-WIW SSG-OLC-PHA SSG-OLC-DE-84 GBV_ILN_26 GBV_ILN_4219 44.60 AVZ 44.05 AVZ AR 37 2017 3 179-192 |
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10.1177/0272989X16670639 doi PQ20170721 (DE-627)OLC1993644857 (DE-599)GBVOLC1993644857 (PRQ)sage_journals_10_1177_0272989X166706390 (KEY)0569524420170000037000300179disclosingtheuncertaintyassociatedwithprognostices DE-627 ger DE-627 rakwb eng 610 DE-600 44.60 bkl 44.05 bkl Engelhardt, Ellen G verfasserin aut Disclosing the Uncertainty Associated with Prognostic Estimates in Breast Cancer 2017 Text txt rdacontent ohne Hilfsmittel zu benutzen n rdamedia Band nc rdacarrier 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. Nutzungsrecht: © The Author(s) 2016 Pieterse, Arwen H oth Han, Paul K. J oth van Duijn-Bakker, Nanny oth Cluitmans, Frans oth Maartense, Ed oth Bos, Monique M. E. M oth Weijl, Nir I oth Punt, Cornelis J. A oth Quarles van Ufford-Mannesse, Patricia oth Sleeboom, Harm oth Portielje, Johanneke E. A oth van der Hoeven, Koos J. M oth Woei-A-Jin, F. J. Sherida oth Kroep, Judith R oth de Haes, Hanneke C. J. M oth Smets, Ellen M. A oth Stiggelbout, Anne M oth Enthalten in Medical decision making Thousand Oaks, Calif. : Sage, 1981 37(2017), 3, Seite 179-192 (DE-627)130398683 (DE-600)604497-9 (DE-576)01590198X 0272-989X nnns volume:37 year:2017 number:3 pages:179-192 http://dx.doi.org/10.1177/0272989X16670639 Volltext http://journals.sagepub.com/doi/full/10.1177/0272989X16670639 GBV_USEFLAG_A SYSFLAG_A GBV_OLC SSG-OLC-WIW SSG-OLC-PHA SSG-OLC-DE-84 GBV_ILN_26 GBV_ILN_4219 44.60 AVZ 44.05 AVZ AR 37 2017 3 179-192 |
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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. 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disclosing the uncertainty associated with prognostic estimates in breast cancer |
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Disclosing the Uncertainty Associated with Prognostic Estimates in Breast Cancer |
| abstract |
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. |
| abstractGer |
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. |
| abstract_unstemmed |
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. |
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Disclosing the Uncertainty Associated with Prognostic Estimates in Breast Cancer |
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Pieterse, Arwen H Han, Paul K. J van Duijn-Bakker, Nanny Cluitmans, Frans Maartense, Ed Bos, Monique M. E. M Weijl, Nir I Punt, Cornelis J. A Quarles van Ufford-Mannesse, Patricia Sleeboom, Harm Portielje, Johanneke E. A van der Hoeven, Koos J. M Woei-A-Jin, F. J. Sherida Kroep, Judith R de Haes, Hanneke C. J. M Smets, Ellen M. A Stiggelbout, Anne M |
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Pieterse, Arwen H Han, Paul K. J van Duijn-Bakker, Nanny Cluitmans, Frans Maartense, Ed Bos, Monique M. E. M Weijl, Nir I Punt, Cornelis J. A Quarles van Ufford-Mannesse, Patricia Sleeboom, Harm Portielje, Johanneke E. A van der Hoeven, Koos J. M Woei-A-Jin, F. J. Sherida Kroep, Judith R de Haes, Hanneke C. J. M Smets, Ellen M. A Stiggelbout, Anne M |
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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. 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J</subfield><subfield code="4">oth</subfield></datafield><datafield tag="700" ind1="1" ind2=" "><subfield code="a">van Duijn-Bakker, Nanny</subfield><subfield code="4">oth</subfield></datafield><datafield tag="700" ind1="1" ind2=" "><subfield code="a">Cluitmans, Frans</subfield><subfield code="4">oth</subfield></datafield><datafield tag="700" ind1="1" ind2=" "><subfield code="a">Maartense, Ed</subfield><subfield code="4">oth</subfield></datafield><datafield tag="700" ind1="1" ind2=" "><subfield code="a">Bos, Monique M. E. M</subfield><subfield code="4">oth</subfield></datafield><datafield tag="700" ind1="1" ind2=" "><subfield code="a">Weijl, Nir I</subfield><subfield code="4">oth</subfield></datafield><datafield tag="700" ind1="1" ind2=" "><subfield code="a">Punt, Cornelis J. 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