Patient-provider and patient-family communication in hereditary breast and ovarian cancer

Background Less than 40% of people with strong family history for breast cancer use genetic services. In hereditary cancers, family communication on genetics is essential for family members’ decision making about genetic risk assessment and counselling. The role of healthcare-providers in supporting communication on genetics within family is recognized, but still limited and unclear. This study aims to understand how healthcare-providers address family-communication in clinical practice and how this may affect genetic test results disclosure from mutation carriers to relatives. Methods Convergent-parallel mixed-method design. Quantitative data are collected with self-administered surveys from hereditary breast and ovarian cancer (HBOC) mutation carriers and at-risk relatives from three linguistic areas of Switzerland. Concomitantly, qualitative data are collected with focus groups and interviews with HBOC mutation carriers, relatives and healthcare-providers. After quantitative and qualitative data analyses, data integration and interpretation will be done. Results Currently, 493 individuals have been recruited, 254 surveys completed and 11 focus groups and 25 interviews conducted (N=51). Only 37% of participants remember receiving recommendation for genetic testing for at-risk relatives and 66.1% shared genetic information to blood relatives. Qualitative data show that family communication on genetics is complex, influenced by many individual and family-related aspects and changing along the trajectory of life and illness. Providers address communication to at-risk relatives discontinuously and in a quick and non-detailed way. Conclusions Supporting family communication on genetics is challenging. Research about genetic communication is timely and essential to implement interventions to enhance clinical practice, cascade testing and multilevel public-health initiatives for cancer prevention and control.