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Background: Women with BRCA1/2 mutations have a higher risk of developing breast and ovarian cancer compared to women of the general population. Various preventive options are available to deal with the increased risk of developing cancer. These include intensified breast cancer screening and risk-reducing bilateral mastectomy and salpingo-oophorectomy. The choice of a preventive option can lead to increased decisional conflict. To support these women in their decision-making process, two evidence-based decision aids were developed in an upstream research process and adapted to the German healthcare context. These will be evaluated within a randomised controlled trial (RCT) in terms of their effects on decision-making, women's level of information and psychological outcome variables., Methods: A sample of 310 women carrying BRCA1/2 mutations (A) without a history of cancer or (B) with a history of unilateral breast cancer who have received post-test genetic counselling will be enrolled. Upon study consent, women will be randomly assigned to either the intervention or the control group. All participants will receive standard care including a physician's letter summarising the counselling content. After baseline data collection (t0), the intervention group receives the respective decision aid while the control group receives standard care only. The primary outcome variable assessed at a 3-month follow-up (t1) is the change of extent in decisional conflict (measured with the Decisional Conflict Scale). Secondary outcome variables comprise the stage of decision-making, self-reported symptoms of anxiety, depression and stress due to the genetic test result, and knowledge regarding cancer risks and preventive options. At t1, the extent of preparation for decision-making and acceptability of the decision aids will also be examined. Another secondary outcome variable assessed at 6-month follow-up (t2) is the extent of decision regret., Discussion: These will be the first decision aids available for BRCA1/2 mutation carriers in Germany to be evaluated regarding their effectiveness and acceptability in clinical use within an RCT. Subsequently, they are to be integrated into the care concept of the centres of the German Consortium for Hereditary Breast and Ovarian Cancer and the affiliated breast centres. TRIAL REGISTRATION {2A}: DRKS DRKS00015823 . Retrospectively registered on 14 June 2019., (© 2022. The Author(s).)

Background: Women with pathogenic BRCA1 and BRCA2 mutations possess a high risk of developing breast and ovarian cancer. They face difficult choices when considering preventive options. This study presents the development process of the first decision aids to support this complex decision-making process in the German healthcare system., Methods: A six-step development process based on the International Patient Decision Aid Standards was used, including a systematic literature review of existing decision aids, a topical medical literature review, preparation of the decision aids, focus group discussions with women with BRCA1/2 mutations, internal and external reviews by clinical and self-help experts, and user tests. All reviews were followed by iterative revisions., Results: No existing decision aids were transferable to the German setting. The medical research revealed a need to develop separate decision aids for women with BRCA1/2 mutations (A) without a history of cancer (previvors) and (B) with a history of unilateral breast cancer (survivors). The focus group discussions confirmed a high level of approval for the decision aids from both target groups. Additionally, previvors requested more information on risk-reducing breast surgery, risk-reducing removal of both ovaries and Fallopian tubes, and psychological aspects; survivors especially wanted more information on breast cancer on the affected side (e.g. biological parameters, treatment, and risk of recurrence)., Conclusions: In a structured process, two target-group-specific DAs for previvors/survivors with BRCA1/2 mutations were developed to support decision-making on risk-adapted preventive options. These patient-oriented tools offer an important addition to existing specialist medical care in Germany.

Psychological factors may influence survival in breast cancer patients but results of previous research are inconclusive. This prospective population-based study tested whether depression predicts mortality in breast cancer patients. Routinely collected depression screening data were merged with electronically archived provincial cancer registry data and censored data from British Columbia Vital Statistics (extracted in December 2012). Cox proportional-hazards regression analyses were conducted to predict all-cause and breast cancer-specific mortality as a function of depression after controlling for biomedical confounders. Of 1,646 patients, 1,604 had breast cancer stages I-III and 42 had stage IV breast cancer. 176 (11.0 %) versus 28 (66.7 %) were deceased after a median follow-up of 76 months. In patients with curable breast cancer, depression predicted all-cause (HR = 1.54 (95 % CI 1.06-2.25); p = 0.024), but not breast cancer-specific mortality (HR = 1.51 (95 % CI 0.95-2.41); p = 0.084). No association was shown for metastatic disease. Stage-specific analyses demonstrated a 2-2.5-fold increase in breast cancer-specific and all-cause mortality in patients with stage I and II disease, but not in patients with stage III or IV breast cancer. In stage I breast cancer patients, age moderated effects of depression such that depressed younger patients diagnosed at age 45 (i.e., mean age -1SD) showed a ninefold (HR = 9.82 (95 % CI 2.26-42.68); p = 0.002) increase in all-cause mortality and depressed patients at 57 a 3.7-fold (HR = 3.69 (95 % CI 1.44-9.48); p = 0.007) increase, while no association was evident in older patients at age 69 (mean age +1SD). Depression is strongly associated with mortality in younger patients with early stage breast cancer.

Purpose: A diagnosis of breast cancer is often accompanied by the fear of loss of previous body image and attractiveness. Hence, many patients opt for reconstructive surgery. This study evaluated the effects of different types of reconstructive surgery after mastectomy on the functional and psychological adjustment of patients., Methods: In a cohort study, patients, who had breast reconstruction after mastectomy by means of four different allogenic or autologues techniques between 1999-2006 were retrospectively interviewed in person or by telephone. The questions addressed complication rates, physical complaints, functional impairments, body image outcomes, sexuality and patient satisfaction., Results: Of 139 patients, 89 (64.7 %) completed the survey. 32 (35.9 %) patients experienced one or more postoperative complications like seroma, hematoma, infections or necrosis. 16 (20 %) and 13 (16 %) patients reported strong and moderate adverse effects on sexuality, respectively. 62 (70 %) patients indicated that they were actively included in the decision making process. Patient ratings of good or bad medical advice were associated with complication rates (p = 0.008). Patients, who evaluated their first preoperative counseling positively, reported higher consent rates when a re-reconstruction became necessary (p ≤ 0.001). Satisfaction with the functional outcome after reconstruction and satisfaction with the cosmetic result was highly correlated (p < 0.001)., Conclusions: A significant association of patient satisfaction with postoperative complications and the decision for a re-reconstruction was demonstrated. Furthermore, our results emphasize the importance of detailed preoperative counseling for women's adjustment to reconstructive surgery.

Associations of characteristics of the cancer context (residence with the mother, age at mother's cancer diagnosis or death, recency of mother's diagnosis or death) and the familial cancer experience (engagement in caregiving, emotional support receipt and provision during the mother's illness) with psychological adjustment were studied cross-sectionally in women at high risk for breast cancer (n = 147). Characteristics of the cancer context and engagement in caregiving for the mother's illness were not associated with psychological adjustment. Adult daughters who reported that they had provided emotional support to her mother (p = .023) and who received emotional support themselves during the mother's illness (p = .038) evidenced lower depressive symptoms. Furthermore, time since the mother's cancer diagnosis moderated effects of emotional support provision on intrusive thoughts such that daughters whose mothers were diagnosed with cancer no more than 5 years previously (but not more distally) reported lower intrusive thoughts when they provided emotional support to their mothers as compared to daughters who did not (p = .003). Effects were not moderated by whether the mother had died from cancer. Although relationships of support receipt and support provision with depressive symptoms may also be attributed to trait-related behaviour linked to better psychological adjustment, the finding that intrusive thoughts were higher in daughters who were not emotionally supportive during their mother's recent cancer diagnosis is likely to be more context-specific.

Objective: The current study evaluates the long-term psychological impact of a decision aid intervention for surgical and systemic treatment in women with newly diagnosed breast cancer from a previous reported randomized, controlled trial (Vodermaier et al., 2009)., Methods: Patients (n = 111) were randomized into usual care, or a 20-min decision aid intervention plus an information brochure prior to consultation planning with the senior physician. The retention rate at 1 year was 88%., Results: Linear mixed model analyses demonstrated that the intervention group experienced less decisional conflict (p = .047; d = .19), which was driven by perceptions of a more effective choice (p = .029; d = .20) over time. Subgroup analyses revealed that patients in the intervention group who participated in chemotherapy decision making showed better long-term body image outcomes (p = .009; d = .44), which were mediated by reduced depressive coping (p = .049). No effects emerged for anxiety and depressive symptoms, or for quality of life. Internal health locus of control moderated group effects on 'uncertainty with the decision' (p = .003)., Conclusions: The study results provide novel evidence on the role of individual differences and the mechanisms behind decision aid effectiveness, and demonstrate the long-term impact of decision aid interventions on some indices of well-being., ((PsycINFO Database Record (c) 2010 APA, all rights reserved).)

Little is known about protective and vulnerability factors of long-term adjustment with BRCA1/2 carrier status. Specifically, the role of personal resources and perceptions of stigmatization have not been studied in the context of adjustment with hereditary breast cancer. The present study, therefore, explored associations of personal resources and stigma with cancer-specific anxiety in female BRCA1/2-carriers within a cross-sectional multi-center study. Participants (n = 237) had received carrier notification between 4 months and 8 years before data collection and experienced a low level of cancer-related anxiety on average. Younger age was associated with both higher perceptions of stigma (P = .002) and cancer-specific anxiety (P = .034). Time since receiving test results, affected status, having undergone prophylactic mastectomy or prophylactic oophorectomy was not associated with demographic or psychological variables. Global self-esteem (P = .002) and mastery (P < .001) were associated with fewer intrusive and avoidant thoughts, whereas stigma was associated with more (P < .001). Time since test result receipt did not moderate relations of self-esteem, mastery or stigma and cancer-specific anxiety. Cancer-specific anxiety did not vary as a function of time since carrier notification. Hence cancer-specific distress may be explained by past and ongoing experiences of cancer in the family rather than by the time point of carrier notification. Psychological interventions may benefit from specifically addressing feelings of stigmatization, and promoting self-worth and personal control in order to affect cancer-specific anxiety.

Within the last decade, several studies have investigated whether adjuvant treatment of breast cancer affects cognitive function. A number of prospective studies have demonstrated inconsistent results regarding whether chemotherapy affects cognitive function. Approximately half of the studies demonstrated subtle cognitive decline in a wide range of domains among some breast cancer patients following chemotherapy, and half did not. Concomitant changes in brain structure and function have been identified in neuroimaging and neurophysiologic studies. Estrogenic therapy has been specifically associated with deterioration in verbal memory and processing speed. However, evidence is mostly based on smaller studies with cross-sectional data. Breast cancer patients who underwent both chemotherapy and estrogenic therapy showed the most deterioration and the most persistent decline in cognitive function. Since cognitive impairment is subtle, if evident at all, discrepant findings are due to hormonal, physiological, psychological or temporal confounding variables and differences in study design. Neuropsychological training has been demonstrated to improve cognitive dysfunction experienced by breast cancer patients after chemotherapy. Future research may examine the unique impact of endocrine therapy on cognitive function with prospective, controlled trials, as well as the role of further confounding variables (e.g., menopausal status, cytokine deregulation, cortisol and concurrent medication).

Background: Most research on adjustment of women undergoing genetic testing for breast cancer susceptibility has not followed women for more than 6 months after result receipt and has not evaluated curvilinear patterns in general and cancer-specific adjustment., Purpose: This study's primary goal was to examine the trajectory of psychological status in women at risk for breast and ovarian cancer prior to undergoing genetic testing through 1 year after BRCA1/2 result receipt., Methods: Women in the UCLA Familial Cancer Registry completed questionnaires assessing psychological status (i.e., depressive symptoms, negative and positive mood, anxiety, and cancer-related distress) prior to testing and at 1, 6, and 12 months after result receipt., Results: Of 155 women tested, 117 were BRCA1/2- (96 uninformative negative and 21 true negative) and 38 were BRCA1/2+. Linear mixed model analyses revealed a consistent pattern in adjustment indicators, such that the groups did not differ at baseline, but mutation carriers endorsed significantly more depressive symptoms, negative mood, and cancer-specific distress relative to non-mutation carriers at 1 and 6 months after test result receipt (and less positive mood at 6 months only). At 12 months, negative and positive mood returned to baseline levels for mutation carriers, and depressive symptoms approached baseline. At 12 months, the groups differed significantly only on cancer-specific distress, owing to declining distress in non-carriers. Neither having a previous cancer diagnosis nor receiving a true negative versus uninformative negative result predicted reactions to genetic testing., Conclusions: Genetic testing prompted an increase in general and cancer-specific distress for BRCA1/2+ women, which remitted by 1 year after result receipt.

Purpose: Bilateral prophylactic mastectomy and oophorectomy are currently the most effective prevention options for female carriers of the BRCA1 or BRCA2 gene. However, especially the mastectomy procedure is very invasive and is chosen rarely among high risk women in Germany. Little is known about how women cope with this surgery and their long-term satisfaction., Methods: Face-to-face interviews were conducted with two BRCA1 mutation carriers, who had undergone prophylactic mastectomy in their twenties 9 and 16 years ago. The process of decision making and long-term satisfaction were analysed using Mayring's qualitative content analysis., Results: Both high risk women had a significant family history of breast and ovarian cancer. They were repeatedly confronted with uncontrollable courses of disease in their relatives who died of breast cancer between the age of 20 and 30 and left small children behind. Although both women experienced different decision making and peri- and post-operative complications, both were satisfied with the decision for prophylactic surgery and showed no regret., Discussion: Deciding to obtain genetic testing pushed women towards further decision making concerning prophylactic surgery in case they carry a mutation. Information about carrier status reduced uncertainty even if the result was adverse. Both high risk women experienced a decrease in cancer related anxiety which may have heightened tolerance for quality of life related impairments. Implications for counseling are described.

Familial cancer services have been developed in many countries in response to a rapidly evolving demand for genetic counseling and testing for breast cancer risk. This article presents a synthesis of the literature on international aspects of genetic counseling and testing and discusses similarities and differences in the provision of genetic counseling and testing, taking seven countries with well established familial cancer services as a case study (Australia, Canada, France, Germany, Netherlands, UK and US). Potential international differences are discussed in terms of: provider and patient attitudes to genetic counseling and genetic testing; utilization rates of genetic testing and prophylactic surgery; and the psychological impact of genetic testing for breast cancer risk. The comparative analyses of utilization rates and the psychological impact of testing indicate a wide range of variability in uptake rates and psychological outcomes, most likely reflecting sample variability and methodological differences in measurement. International comparison studies using controlled designs would be required to ascertain whether international differences exist, and to disentangle the differential role of clinical, individual and family context factors, on the one hand, and the cultural and health system-related factors unique to particular countries, on the other.

Following an overall view of the emotional situation of primary breast cancer patients and of studies exploring shared decision making in this setting we present the results of qualitative analyses about breaking bad news situations and interviews with this group of patients and describe both methods for implementing shared decision making in the treatment of primary breast cancer and an evaluation study. The main result was that most patients showed a lack of information about breast cancer and its therapy, which led to uncertainty. Another source of uncertainty was the lack of preoperative punch biopsy. Due to the so-called "diagnostic shock" patients felt under pressure to make a quick decision over their treatment. This perceived pressure can be effectively countered by a shared decision making approach. To investigate the options in breast cancer therapy, decision aids for diagnostic and therapeutic options have been developed focusing on the following treatment modalities: 1. breast conserving therapy and radiation versus radical mastectomy 2. chemotherapy plus endocrine therapy versus endocrine therapy alone 3. preoperative versus postoperative chemotherapy. The decision instruments in question were tested in N = 35 breast cancer patients and N = 36 nurses as a control group. The results of a questionnaire survey among both these groups revealed a very positive appraisal of the decision aids. Implementation in daily routine was favoured.