Prophylactic Mastectomy or Screening in Women Suspected to Have the BRCA1/2 Mutation

Background. Women suspected to have the BRCA1/2 mutation may choose between two management options: breast cancer screening and prophylactic mastectomy (PM). Objectives . To compare women's treatment choices with medical and decision-analytic recommendations and to explore variables related to the women's choices. Methods. After provision of information, individual time-tradeoff values for the health outcome "living after PM" were assessed and incorporated into a decision-analytic model, which compared the management options PM and screening with respect to their effects on quality-adjusted life expectancy. Results. Of the 54 women suspected to have the mutation, 51 completed the shared-decision-making procedure. Quality-adjusted life expectancy after PM management was longer for 67% of proven carriers and for 58% of women awaiting the DNA-test result. Twelve proven carriers made definitive treatment choices: eight (67%) chose PM and four (33%) chose screening. All carriers' treatment choices agreed with the normative decision-analytic recommendations. Four (33%) disagreed with the medical recommendations. Of the 36 women awaiting DNA-test results, 32 made hypothetical treatment choices. The agreement between these hypothetical treatment choices and the decision-analytic recommendations was good (78%). Combining data from all 48 women, being married (OR = 14.00, p = 0.006), having children (OR = 4.71, p = 0.02), low desire to participate (OR = 0.14, p = 0.004), high decisional stress (OR = 5.22, p = 0.01), a lower estimate of the "probability of cure for screen-detected breast cancer" (OR = 0.13, p = 0.004), and higher time-tradeoff values for PM (OR = 182, p