Risk communication in a patient decision aid for radiotherapy in breast cancer: How to deal with uncertainty?

D. B. Raphael; N. S. Russell; J. M. Immink; P. G. Westhoff; M. C. Stenfert Kroese; M. R. Stam; L. M. van Maurik; H. J. G. D. van den Bongard; J. H. Maduro; M. G. A. Sattler; T. van der Weijden; L. J. Boersma

doi:10.1016/j.breast.2020.04.001

Risk communication in a patient decision aid for radiotherapy in breast cancer: How to deal with uncertainty?

D. B. Raphael, N. S. Russell, J. M. Immink, P. G. Westhoff, M. C. Stenfert Kroese, M. R. Stam, L. M. van Maurik, H. J. G. D. van den Bongard, J. H. Maduro, M. G. A. Sattler, T. van der Weijden, L. J. Boersma^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › Academic › peer-review

3 Citations (Web of Science)

Abstract

Background and aim: Patient decision aids for oncological treatment options, provide information on the effect on recurrence rates and/or survival benefit, and on side-effects and/or burden of different treatment options. However, often uncertainty exists around the probability estimates for recurrence/survival and side-effects which is too relevant to be ignored. Evidence is lacking on the best way to communicate these uncertainties. The aim of this study is to develop a method to incorporate uncertainties in a patient decision aid for breast cancer patients to support their decision on radiotherapy.

Methods: Firstly, qualitative interviews were held with patients and health care professionals. Secondly, in the development phase, thinking aloud sessions were organized with four patients and 12 health care professionals, individual and group-wise.

Results: Consensus was reached on a pictograph illustrating the whole range of uncertainty for local recurrence risks, in combination with textual explanation that a more exact personalized risk would be given by their own physician. The pictograph consisted of 100 female icons in a 10 x 10 array. Icons with a stepwise gradient color indicated the uncertainty margin. The prevalence and severity of possible sideeffects were explained using verbal labels.

Conclusions: We developed a novel way of visualizing uncertainties in recurrence rates in a patient decision aid. The effect of this way of communicating risk uncertainty is currently being tested in the BRASA study (NCT03375801). (C) 2020 The Author(s). Published by Elsevier Ltd.

Original language	English
Pages (from-to)	105-113
Number of pages	9
Journal	Breast
Volume	51
Issue number	1
DOIs	https://doi.org/10.1016/j.breast.2020.04.001
Publication status	Published - Jun 2020

Keywords

Radiotherapy
Decision aid
Risk communication
Numerical uncertainty
CONSERVING SURGERY
FOLLOW-UP
IRRADIATION
WOMEN
BOOST

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10.1016/j.breast.2020.04.001

Cite this

Raphael, D. B., Russell, N. S., Immink, J. M., Westhoff, P. G., Kroese, M. C. S., Stam, M. R., van Maurik, L. M., van den Bongard, H. J. G. D., Maduro, J. H., Sattler, M. G. A., van der Weijden, T., & Boersma, L. J. (2020). Risk communication in a patient decision aid for radiotherapy in breast cancer: How to deal with uncertainty? Breast, 51(1), 105-113. https://doi.org/10.1016/j.breast.2020.04.001

@article{fd37e11d6ea54d87b06e931dd7df1e59,

title = "Risk communication in a patient decision aid for radiotherapy in breast cancer: How to deal with uncertainty?",

abstract = "Background and aim: Patient decision aids for oncological treatment options, provide information on the effect on recurrence rates and/or survival benefit, and on side-effects and/or burden of different treatment options. However, often uncertainty exists around the probability estimates for recurrence/survival and side-effects which is too relevant to be ignored. Evidence is lacking on the best way to communicate these uncertainties. The aim of this study is to develop a method to incorporate uncertainties in a patient decision aid for breast cancer patients to support their decision on radiotherapy.Methods: Firstly, qualitative interviews were held with patients and health care professionals. Secondly, in the development phase, thinking aloud sessions were organized with four patients and 12 health care professionals, individual and group-wise.Results: Consensus was reached on a pictograph illustrating the whole range of uncertainty for local recurrence risks, in combination with textual explanation that a more exact personalized risk would be given by their own physician. The pictograph consisted of 100 female icons in a 10 x 10 array. Icons with a stepwise gradient color indicated the uncertainty margin. The prevalence and severity of possible sideeffects were explained using verbal labels.Conclusions: We developed a novel way of visualizing uncertainties in recurrence rates in a patient decision aid. The effect of this way of communicating risk uncertainty is currently being tested in the BRASA study (NCT03375801). (C) 2020 The Author(s). Published by Elsevier Ltd.",

keywords = "Radiotherapy, Decision aid, Risk communication, Numerical uncertainty, CONSERVING SURGERY, FOLLOW-UP, IRRADIATION, WOMEN, BOOST",

author = "Raphael, {D. B.} and Russell, {N. S.} and Immink, {J. M.} and Westhoff, {P. G.} and Kroese, {M. C. Stenfert} and Stam, {M. R.} and {van Maurik}, {L. M.} and {van den Bongard}, {H. J. G. D.} and Maduro, {J. H.} and Sattler, {M. G. A.} and {van der Weijden}, T. and Boersma, {L. J.}",

year = "2020",

month = jun,

doi = "10.1016/j.breast.2020.04.001",

language = "English",

volume = "51",

pages = "105--113",

journal = "Breast",

issn = "0960-9776",

publisher = "Churchill Livingstone",

number = "1",

}

Raphael, DB, Russell, NS, Immink, JM, Westhoff, PG, Kroese, MCS, Stam, MR, van Maurik, LM, van den Bongard, HJGD, Maduro, JH, Sattler, MGA, van der Weijden, T & Boersma, LJ 2020, 'Risk communication in a patient decision aid for radiotherapy in breast cancer: How to deal with uncertainty?', Breast, vol. 51, no. 1, pp. 105-113. https://doi.org/10.1016/j.breast.2020.04.001

TY - JOUR

T1 - Risk communication in a patient decision aid for radiotherapy in breast cancer

T2 - How to deal with uncertainty?

AU - Raphael, D. B.

AU - Russell, N. S.

AU - Immink, J. M.

AU - Westhoff, P. G.

AU - Kroese, M. C. Stenfert

AU - Stam, M. R.

AU - van Maurik, L. M.

AU - van den Bongard, H. J. G. D.

AU - Maduro, J. H.

AU - Sattler, M. G. A.

AU - van der Weijden, T.

AU - Boersma, L. J.

PY - 2020/6

Y1 - 2020/6

N2 - Background and aim: Patient decision aids for oncological treatment options, provide information on the effect on recurrence rates and/or survival benefit, and on side-effects and/or burden of different treatment options. However, often uncertainty exists around the probability estimates for recurrence/survival and side-effects which is too relevant to be ignored. Evidence is lacking on the best way to communicate these uncertainties. The aim of this study is to develop a method to incorporate uncertainties in a patient decision aid for breast cancer patients to support their decision on radiotherapy.Methods: Firstly, qualitative interviews were held with patients and health care professionals. Secondly, in the development phase, thinking aloud sessions were organized with four patients and 12 health care professionals, individual and group-wise.Results: Consensus was reached on a pictograph illustrating the whole range of uncertainty for local recurrence risks, in combination with textual explanation that a more exact personalized risk would be given by their own physician. The pictograph consisted of 100 female icons in a 10 x 10 array. Icons with a stepwise gradient color indicated the uncertainty margin. The prevalence and severity of possible sideeffects were explained using verbal labels.Conclusions: We developed a novel way of visualizing uncertainties in recurrence rates in a patient decision aid. The effect of this way of communicating risk uncertainty is currently being tested in the BRASA study (NCT03375801). (C) 2020 The Author(s). Published by Elsevier Ltd.

AB - Background and aim: Patient decision aids for oncological treatment options, provide information on the effect on recurrence rates and/or survival benefit, and on side-effects and/or burden of different treatment options. However, often uncertainty exists around the probability estimates for recurrence/survival and side-effects which is too relevant to be ignored. Evidence is lacking on the best way to communicate these uncertainties. The aim of this study is to develop a method to incorporate uncertainties in a patient decision aid for breast cancer patients to support their decision on radiotherapy.Methods: Firstly, qualitative interviews were held with patients and health care professionals. Secondly, in the development phase, thinking aloud sessions were organized with four patients and 12 health care professionals, individual and group-wise.Results: Consensus was reached on a pictograph illustrating the whole range of uncertainty for local recurrence risks, in combination with textual explanation that a more exact personalized risk would be given by their own physician. The pictograph consisted of 100 female icons in a 10 x 10 array. Icons with a stepwise gradient color indicated the uncertainty margin. The prevalence and severity of possible sideeffects were explained using verbal labels.Conclusions: We developed a novel way of visualizing uncertainties in recurrence rates in a patient decision aid. The effect of this way of communicating risk uncertainty is currently being tested in the BRASA study (NCT03375801). (C) 2020 The Author(s). Published by Elsevier Ltd.

KW - Radiotherapy

KW - Decision aid

KW - Risk communication

KW - Numerical uncertainty

KW - CONSERVING SURGERY

KW - FOLLOW-UP

KW - IRRADIATION

KW - WOMEN

KW - BOOST

U2 - 10.1016/j.breast.2020.04.001

DO - 10.1016/j.breast.2020.04.001

M3 - Article

C2 - 32298961

VL - 51

SP - 105

EP - 113

JO - Breast

JF - Breast

SN - 0960-9776

IS - 1

ER -