Accuracy in risk understanding among BRCA1/2-mutation carriers

Abstract

ObjectiveBRCA1/2-mutation carriers are at high risk of developing cancer. Since they must weigh clinical recommendations and decide on risk-reducing measures, the correct understanding of their 10-year cancer risks is essential. This study focused on the accuracy of women’s subjective estimates of developing breast and ovarian cancer within ten years as prerequisite to reduce unnecessary prevention. Methods59 and 52 BRCA1/2-mutation carriers provided their individual risks of developing breast or ovarian cancer in the next 10 years, along with self-reported sociodemographic and psychosocial variables. Women’s risk estimates were compared with their objective cancer risks that had been communicated before. Results22.6% of counselees under- and 53.2% of the counselees overestimated their 10-year risk of developing breast cancer. As for ovarian cancer, 5.6% under- whereas 51.9% overestimated their risk. Neither demographic factors such as education, parenthood and age, nor a prior diagnosis of breast cancer or prophylactic surgery accounted for these variations in risk accuracy. ConclusionCurrently, risk communication during genetic counseling does not guarantee accurate risk estimation in BRCA-mutation carriers. Practice ImplicationsCounselors must be prepared to prevent overestimation. Counselees’ risk estimates need to be assessed and corrected to enable informed decision-making and reduce risks of unnecessary preventive efforts.