Compliance and satisfaction with BRCA surveillance in specialized clinics versus community follow-up.

OBJECTIVE: To assess adherence to medical follow-up protocols among BRCA1/2 carriers and compare outcomes between dedicated carrier clinics and community healthcare settings. METHODS: This cross-sectional study was conducted by distributing an anonymous questionnaire within the 'Good BRCA Genes - Support and Information Group for BRCA Carriers' association. The questionnaire assessed adherence to recommended surveillance and satisfaction with various aspects of the follow-up. RESULTS: Of the 682 BRCA carriers surveyed, 68.5% reported fully adhering to recommended medical follow-up. Those not fully adhering cited bureaucracy challenges, scheduling difficulties, timing uncertainties, and difficulty remembering examination dates. Less than 50% were satisfied with appointment availability, scheduling, contact persons, and general practitioners' knowledge of BRCA carrier risks and follow-up. The 417 women monitored in dedicated breast clinics reported notably higher optimal adherence to recommended surveillance (78.3 vs. 53.6%, P < 0.0001). In addition, they noted greater satisfaction with appointment availability (63.7 vs. 25.0%, P < 0.0001), appointment scheduling process (58.1 vs. 24.7%, P < 0.0001), availability of breast surgeons/gynecology specialists (67.4 vs. 50.8%, P < 0.0001), and availability of a contact person for consultations between appointments (53.5 vs. 20.8%, P < 0.0001). DISCUSSION: Our findings highlight the advantages of surveillance in dedicated BRCA1/2 clinics, including closer monitoring and increased satisfaction. Given the limited availability of such clinics and the growing number of BRCA1/2 carriers, the opening of additional dedicated clinics and the consideration of alternative surveillance-enhancing solutions, such as training healthcare professionals, using digital tools, and employing artificial intelligence, are essential.

Recommendations of Health Care Professionals on the Issue of Breastfeeding in BRCA Carriers.

Purpose: Breastfeeding is associated with numerous short- and long-term neonatal and maternal health benefits. Specifically, in BRCA1/2 female carriers, breastfeeding has been shown to reduce the considerably increased risks of breast and ovarian cancer. Nevertheless, there is paucity of data referring to the recommended postpartum surveillance of BRCA1/2 carriers. The purpose of this study was to evaluate the recommendations of health professionals regarding breastfeeding in BRCA carriers. Methods: This cross-sectional survey was conducted using an anonymous questionnaire distributed through the "Good BRCA Genes-a support and information group for BRCA carriers" association. The questionnaire included Likert scale and open-ended questions, aimed to evaluate the performance of health professionals at various aspects of the recommended follow-up. Results: Of the 388 participants, 233 (60.0%) expressed dissatisfaction with explanations provided by health professionals regarding pregnancy and breastfeeding. Women reporting dissatisfaction with explanations were younger (36.8 ± 7.0 years) compared to those satisfied with the explanations (38.8 ± 7.6 years, p = 0.0081). No significant differences were noted between women satisfied and those dissatisfied with the explanations in terms of age of genetic diagnosis, origin, religion, geographic location, and the rates of personal or familial cancer history. Of the 175 responses to an open question "please describe the reasons for unsatisfactory explanation," 76.6% stated they received no explanation on the subject, whereas 5.4% described minimal explanation or conflicting recommendations. Surprisingly, 4.7% recalled being advised to avoid, stop, or limit breastfeeding. Discussion: The results of this survey emphasize the lack of knowledge of health professionals on the issue of breastfeeding in BRCA carriers. As genetic variants in these genes involve significant proportion of the population (up to 2.5% in Ashkenazi Jewish population), raising the awareness of health care personnel to the benefits of breastfeeding in these women seems prudent.