Decision-making processes for risk-reducing surgery used by women at risk for hereditary breast/ovarian cancer (HBOC)

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Purpose:Few studies have explored decision processes for risk-reducing surgery for HBOC. We described decision processes for risk-reducing oophorectomy (RRO) and risk-reducing mastectomy (RRM) in women who were at risk for HBOC and presenting for commercial BRCA genetic predisposition testing.
 >Procedures: 107 women ages 18 and older were enrolled from a university or a community cancer genetic risk program. Three months after receiving their BRCA test results from a genetic counselor, the women completed a self-report survey wherein they listed their choice (have, not have, undecided) for RRO and RRM. These decisions were interpreted using conditions of Decision Theory (Resnik, 1987): decision under certainty, decision under risk, and decision under uncertainty. A decision under certainty reflects a desire to carefully weigh known advantages/disadvantages to risk-reducing surgery and make a decision based on personal reasons or estimations, without necessarily agreeing with information and recommendations from healthcare providers or other sources. A decision under risk is based primarily on BRCA test result and treatments that offer the most personal benefit for controlling cancer risk. A decision under uncertainty reflects discomfort with the decision, basing it primarily on opinions and information from healthcare providers and other sources. Descriptive statistics, chi-square and ANOVA were used to assess demographic and disease characteristics, BRCA test results, risk factors, perceived risk, decisions, decision processes, and associations of decision processes with other variables.
 >Findings: The mean age was 53.6 years. Most participants were white, well-educated and professionally employed. Most had a personal history of cancer: 84.1%, 4.7%, and 0.9% were diagnosed with breast cancer, ovarian cancer, and both cancers, respectively. Most (84%) had a negative BRCA test result, 8% had a positive result and 8% had an inconclusive result. 54% and 62% chose not to have RRO and RRM, respectively; 29% and 30% had undergone or planned to have RRO and RRM, respectively; and 17% and 8% were undecided having RRO and RRM, respectively. There was a significant difference among the three decision types with age (F=3.214). For RRO, decision types were significantly associated with current occupation (χ² =31.39). 43% of participants who chose to have or not have risk-reducing surgery made a decision under certainty; 46% of women who were undecided reported making a decision under risk. The decision-making process was significantly associated with participants’ HBOC risk factors (chi-square =10.38), but not with any other variables.
 >Conclusions: The majority of our sample did not desire risk-reducing surgery, despite its known efficacy in preventing breast and ovarian cancer occurrence or recurrence. Most women who chose to either have or not have risk-reducing surgery made their decision based on certainty, suggesting that the decision is based on careful consideration of all factors and is autonomous. High-risk women are becoming more proactive in their decision-making about RRM and RRO, and may or may not use the information given by healthcare providers to make their choices. BRCA testing is but one tool to use for decision making, but in this small sample, it did not appear to move women from a state of indecision for surgery.