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
Affiliations
D.B. Raphael
Department of Radiation Oncology (Maastro), GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, the Netherlands; Department of Family Medicine, CAPHRI School for Public Health and Primary Care, Maastricht University, Maastricht, the Netherlands; Department of Radiation Oncology, Netherlands Cancer Institute, Antoni van Leeuwenhoek, Amsterdam, the Netherlands
N.S. Russell
Department of Radiation Oncology, Netherlands Cancer Institute, Antoni van Leeuwenhoek, Amsterdam, the Netherlands
J.M. Immink
Department of Radiation Oncology, Reinier de Graaf Hospital, Delft, the Netherlands; Department of Radiation Oncology, Leiden University Medical Center, Leiden, the Netherlands
P.G. Westhoff
Department of Radiation Oncology, Radboud University Medical Center, Nijmegen, the Netherlands
M.C. Stenfert Kroese
Radiotherapy Group, Deventer, the Netherlands
M.R. Stam
Radiotherapy Group, Arnhem, the Netherlands
L.M. van Maurik
Department of Radiation Oncology, Amsterdam University Medical Centers, the Netherlands
H.J.G.D. van den Bongard
Department of Radiation Oncology, University Medical Center, Utrecht, the Netherlands
J.H. Maduro
Department of Radiation Oncology, University of Groningen, University Medical Center Groningen, Groningen, the Netherlands
M.G.A. Sattler
Department of Radiation Oncology, Erasmus MC Cancer Institute, Rotterdam, the Netherlands
T. van der Weijden
Department of Family Medicine, CAPHRI School for Public Health and Primary Care, Maastricht University, Maastricht, the Netherlands
L.J. Boersma
Department of Radiation Oncology (Maastro), GROW School for Oncology and Developmental Biology, Maastricht University Medical Centre+, Maastricht, the Netherlands; Corresponding author. Maastro, Dr. Tanslaan 12, 6229 ET, Maastricht, the Netherlands.
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).
