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

• Published in: Breast (Edinburgh) Vol. 51; pp. 105 - 113
• Main Authors: 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.
• Format: Journal Article
• Language: English
• Published: Netherlands Elsevier Ltd 01-06-2020; Elsevier
• Subjects: Breast Neoplasms - radiotherapy; Communication; Data Visualization; Decision aid; Decision Making; Decision Support Techniques; Female; Health Personnel - psychology; Humans; Numerical uncertainty; Original; Patient Participation - psychology; Radiotherapy; Risk; Risk communication; Uncertainty; Numerical uncertainty; Risk communication; DCS; PtDA; Decision aid; HP; Radiotherapy; SDM; LRR; BCSS
• ISSN: 0960-9776; 1532-3080
• DOI: 10.1016/j.breast.2020.04.001

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.
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.
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.
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).
•There exists uncertainty around local recurrence risks for breast cancer patients.•Little is known on how to communicate uncertainty to patients.•Patient decision aids can help communicating risks and uncertainty.•We developed pictographs to communicate numerical uncertainty in recurrence risks.•The effect of the pictographs is currently being tested in the BRASA study.