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 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).

Keywords: Decision aid; Numerical uncertainty; Radiotherapy; Risk communication.

Fig. 1

Overview of the development of the Patient decision aid.

Fig. 2

Pictograph in first draft version of the PtDA: Local recurrence risk for low risk breast cancer after breast conserving surgery without radiotherapy.

Fig. 3

Study-logo adapted pictographs with local recurrence risk with and without radiotherapy, in the first online version: Local recurrence risk for low risk breast cancer after breast conserving surgery with and without radiotherapy.

Fig. 4

Pictograph without uncertainty range before round 3: 10 years local recurrence risk for low risk breast cancer after breast conserving surgery with and without radiotherapy, with the BRASA logo pictographs replaced.

Fig. 5

a Turning pictograph with fading colours: 10 years Local recurrence risk intermediate risk breast cancer after mastectomy with and without radiotherapy.5b Turning pictograph with textual explanation on the back: 10 years Local recurrence risk intermediate risk breast cancer after mastectomy with and without radiotherapy.

Fig. 6

Pictograph with uncertainty margins, final version of PtDA: 10 years Local recurrence risk for intermediate risk breast cancer after mastectomy with and without radiotherapy.