Risk communication in a patient decision aid for radiotherapy in breast cancer: How to deal with uncertainty?
Raphael, D. B.; Russell, N. S.; Immink, J. M.; Westhoff, P. G.; Stenfert Kroese, M. C.; 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) Breast, volume 51, pp. 105 - 113
(Article)
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
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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 side-effects 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).
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Keywords: Decision aid, Numerical uncertainty, Radiotherapy, Risk communication, Surgery
ISSN: 0960-9776
Publisher: Churchill Livingstone
Note: Funding Information: This study is funded by the Dutch Cancer Society , Nethterlands, Alpe d’HuZes (grant number MAC2014-7024 ). We would like to thank Paul Alders (EyeSpirations, Amersfoort, The Netherlands) for his work in the development of the online version of the PtDA and the pictographs. We further would like to thank Maaike Schuurman and the patient advocates from the national breast cancer association, Ineke Schutte-Hoogstraten from the patient advisory group of the national breast cancer research group and the patient advocate from the advisory board of Maastro for their input and feedback. Funding Information: This work was supported by Alpe d'Huzes KWF, Netherlands [grant number MAC2014-7024]. The funding agreement ensured the authors? independence in designing the study, interpreting the data, writing, and publishing the report.This study is funded by the Dutch Cancer Society, Nethterlands, Alpe d'HuZes (grant number MAC2014-7024). We would like to thank Paul Alders (EyeSpirations, Amersfoort, The Netherlands) for his work in the development of the online version of the PtDA and the pictographs. We further would like to thank Maaike Schuurman and the patient advocates from the national breast cancer association, Ineke Schutte-Hoogstraten from the patient advisory group of the national breast cancer research group and the patient advocate from the advisory board of Maastro for their input and feedback. Funding Information: This work was supported by Alpe d’Huzes KWF , Netherlands [grant number MAC2014-7024 ]. The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report. Publisher Copyright: © 2020 The Author(s)
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