Prophylactic mastectomy or screening in women suspected to have the BRCA1/2 mutation: A prospective pilot study of women's treatment choices and medical and decision-analytic recommendations

Background. Women suspected to have the BRCA1/2 mutation may choose between two management options: breast cancer screening and prophylactic mastectom y (PM). Objectives. To compare women's treatment choices with medical and d ecision-analytic recommendations and to explore variables related to the wo men's choices. Methods. After provision of information, individual time-tra deoff values for the health outcome "living after PM" were assessed and inc orporated into a decision-analytic model, which compared the management opt ions PM and screening with respect to their effects on quality-adjusted lif e expectancy. Results. Of the 54 women suspected to have the mutation, 51 c ompleted the shared-decision-making procedure. Quality-adjusted life expect ancy after PM management was longer for 67% of proven carriers and for 58% of women awaiting the DNA-test result. Twelve proven carriers made definiti ve 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 cho ices. The agreement between these hypothetical treatment choices and the de cision-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 < 0.0001) made a choice for PM more li kely. Conclusions. The complete agreement between the decision-analytic rec ommendations and the carriers' choices suggests that women act in accordanc e with normative decision theory. The disagreement between the carriers' ch oices and the medical recommendations suggests that women's choices and phy sicians' recommendations were guided by different arguments. The strong ass ociation between time-tradeoff value and treatment choice suggests that the time-tradeoff is a valid method to assess preferences.