Abstract
Purpose
Counselees’ preferences are considered important for the choice of risk communication format and for improving patient-centered care. We here report on counselees’ preferences for how risks are presented in familial breast cancer counseling and the impact of this preferred format on their understanding of risk.
Patients and Methods
As part of a practice-based randomized controlled trial, 326 unaffected women with a family history of breast cancer received their lifetime risk in one of five presentation formats after standard genetic counseling in three Dutch familial cancer clinics: 1) in percentages, 2) in frequencies (“X out of 100”), 3) in frequencies plus graphical format (10×10 human icons), 4) in frequencies and 10-year age-related risk and 5) in frequencies and 10-year age-related risk plus graphical format. Format preferences and risk understanding (accuracy) were assessed at 2-week follow-up by a questionnaire, completed by 279/326 women.
Results
The most preferred risk communication formats were numbers combined with verbal descriptions (37%) and numbers only (26%). Of the numerical formats, most (55%) women preferred percentages. The majority (73%) preferred to be informed about both lifetime and 10-year age-related risk. Women who had received a graphical display were more likely to choose a graphical display as their preferred format. There was no significant effect between the intervention groups with regard to risk accuracy. Overall, women given risk estimates in their preferred format had a slightly better understanding of risk.
Conclusion
The results suggest that the accuracy of breast cancer risk estimation is slightly better for women who had received this information in their preferred format, but the risk format used had no effect on women’s risk accuracy. To meet the most frequent preference, counselors should consider providing a time frame of reference (eg, risk in the next 10 years) in a numerical format, in addition to lifetime risk.
Data Sharing Statement
The dataset used is available from the corresponding author on reasonable request.
Acknowledgments
We thank Caroline Ockhuysen-Vermey, Ineke Bakker, Nandy Hofland, Monica Legdeur and Vera Giebels, and all the clinical geneticists and genetic counselors for their efforts in making this study possible. Special thanks are due to all the women who took the time for an extra counseling session and completing the questionnaires. Elisa García is acknowledged for critical review of the manuscript. We thank Kate McIntyre and Jackie Senior for editing the manuscript.
Disclosure
The authors report no conflicts of interest in this work.