Do preferred risk formats lead to better understanding? A multicenter controlled trial on communicating familial breast cancer risks using different risk formats

Lidewij Henneman,1 Christi J van Asperen,2 Jan C Oosterwijk,3 Fred H Menko,4 Liesbeth Claassen,5 Daniëlle RM Timmermans5 1Department of Clinical Genetics, Amsterdam UMC, Vrije Universiteit, Amsterdam, the Netherlands; 2Department of Clinical Genetics, Leiden University Medical Center, Leiden, the Netherlands; 3Department of Genetics, University of Groningen, University Medical Center Groningen, Groningen, the Netherlands; 4Family Cancer Clinic, Netherlands Cancer Institute, Amsterdam, the Netherlands; 5Department of Public and Occupational Health, Amsterdam UMC, Vrije Universiteit, Amsterdam, the NetherlandsCorrespondence: Lidewij HennemanDepartment of Clinical Genetics, Amsterdam UMC, Vrije Universiteit, PO Box 7057, 1007 MB, Amsterdam, the NetherlandsTel +31 20-4449815Email l.henneman@amsterdamumc.nlPurpose: 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.Keywords: risk communication, breast cancer, genetic counseling, patient preference, understanding, risk accuracy