With 69,000 newly diagnosed cases every year, breast cancer (BC) is the most frequent cancer disease among women in Germany. Familial clustering is seen in about 30% of newly diagnosed cases. Besides the high‐risk genes BRCA1/2, there are also moderate‐risk BC genes (MBCG) that are associated with a 20%–50% risk of BC, such as CHEK2, ATM, and PALB2. In Germany, carriers of pathogenic variants in MBCG receive specific information on their test results, individual risks, and preventive options during genetic counseling for the disclosure of the results in a specialized center. Little is known about the medical knowledge that women have after attending counseling. This study aims to identify the medical knowledge, further information needs, and the possible impact of a lack of information on dealing with everyday life for women with pathogenic variants in MBCG who have attended genetic counseling at an academic hospital in Germany.Problem‐centered, guided, individual interviews were conducted with twelve women carrying pathogenic variants in MBCG. The interview guide was developed based on the methods of the problem‐centered interview according to Witzel. The interview analysis was based on Mayring's qualitative content analysis. The women were between 29 and 59 years old and carried pathogenic variants in the risk genes CHEK2 (n = 8), ATM (n = 1), or PALB2 (n = 3). Several medical uncertainties and information needs emerged from the data, concerning (a) medical terms, (b) risk perception, (c) BC therapy for hereditary BC, (d) lifestyle advice and risk factors, and (e) family planning and risk‐reducing mastectomy. Women with pathogenic variants in MBCG might develop their own conceptions regarding the onset of disease and inheritance. In order to meet the need for information and address the uncertainties that may still exist after genetic counseling, structured, evidence‐based and comprehensible written information in German should be developed for this group.

Hereditary breast cancer accounts for approximately 30% of newly diagnosed breast cancer (BC) cases. Pathogenic variants in moderate-risk BC genes (MBCG) differ from those in high-risk genes in terms of associated cancer risks, affected organs, and available preventive options. Little is known about how MBCG pathogenic variant carriers who have attended post-test genetic counseling perceive their situation, how they cope with their situation, and which support needs they might have. Problem-centered, guided, individual interviews were conducted with twelve women carrying pathogenic variants in MBCG. The interview analysis was based on Mayring’s qualitative content analysis. The women were between 29 and 59 years old and carried pathogenic variants in the risk genes CHEK2 (n = 8), ATM (n = 1), or PALB2 (n = 3). Women reported a wide range of feelings, both positive (relief, calmness) and negative (overwhelm, fear, grief, guilt). All women applied strategies of emotion-focused coping to deal with this lifelong situation. Appraisal and evaluation of the affected mother’s coping might influence the patient’s own behavior and coping style. These results could be used during and after post-test genetic counseling to provide more needs-oriented counseling, and to help women in adjusting to and coping with being a pathogenic variant carrier.

Background: Women with BRCA1 / 2 pathogenic variants (PVs) without a personal cancer history and with open family planning are in a very complex decision-making situation regarding their preventive and reproductive options. This exploratory study aims to assess the impact of a decision coaching (DC) program on decisional conflict and decision-making of these women regarding their preventive decision. Methods: BRCA1/2 PV carriers without a personal cancer history were recruited and randomly assigned to intervention or control group (IG, CG). The IG participated in a DC program consisting of in-person decision coaching and an evidence-based, structured decision aid about the preventive options (intensified breast surveillance, risk-reducing bilateral mastectomy, and risk-reducing bilateral salpingo-oophorectomy); the CG received usual care. Data was collected at baseline, 12 weeks and 6 months after study inclusion. Decision-related outcomes regarding the participants’ preventive decision were measured with the Decisional Conflict Scale (DCS) and the Status of Decision-Making Scale. Subgroup analysis was performed to assess differences between women with open versus completed family planning using descriptive statistics and multiple linear regression models. Results: Women with open family planning experienced higher baseline DCS scores regarding their preventive decision-making than women with completed family planning (mean DCS total score 39.5 vs. 34.4; mean difference −5.12, 95%CI [−9.328;-0.977], p = 0.018 ). In the total group, decisional conflict decreased considerably more in the IG than in the CG. Among women in the IG, those with open family planning showed a greater reduction in DCS scores than women with completed family planning. In initially undecided women with open family planning, 12 weeks after study inclusion significantly more women in the IG reached a preventive decision than in the CG (61.8% vs. 23.3%, p < 0.001 ). Significantly more women with open family planning in the IG opted for the intensified breast surveillance program compared to the CG. Conclusions: A DC program developed for unaffected BRCA1/2 PV carriers may contribute to reducing decisional conflict and increasing decision-making, especially in women with open family planning.