Racial and Ethnic Disparities in Genomic Healthcare Utilization, Patient Activation, and Intrafamilial Communication of Risk among Females Tested for BRCA Variants: A Mixed Methods Study

SIMPLE SUMMARY: Decision-making on intrafamilial communication of Breast Cancer gene (BRCA) risk and subsequent cascade screening is complex and affected by individual, interpersonal, and healthcare system-related factors. There is a paucity of evidence on factors affecting intrafamilial risk communication, especially among ethnically and racially diverse individuals tested for BRCA variants. A deep understanding of multi-level factors affecting communication is needed to reap the full potential of cascade screening for improving health outcomes. This study provides findings to guide theory-driven, multi-level interventions to enhance the utilization of genomic healthcare for diverse people. ABSTRACT: This study aimed to gain a deeper understanding of genomic healthcare utilization, patient activation, and intrafamilial risk communication among racially and ethnically diverse individuals tested for BRCA variants. We employed an explanatory, sequential, mixed-methods study guided by the Theory of Planned Behavior. Participants completed an online survey, including sociodemographic, medical history, and several validated instruments. A subset of participants participated in in-depth, semi-structured interviews. A total of 242 women were included in the quantitative analyses. The majority of survey participants identified as non-Hispanic white (NHW) (n = 197, 81.4%) while 45/242 (18.5%) identified as black, Indigenous, and people of color (BIPOC). The NHW participants were more likely to communicate genetic test results with healthcare providers, family, and friends than BIPOC participants (p < 0.05). BIPOC participants had lower satisfaction with testing decisions and significantly higher ratings of personal discrimination, fatalism, resilience, uncertainty, and lower patient activation scores (p < 0.05). Participants with higher education, greater satisfaction with testing decisions, and lower resilience are more likely to communicate BRCA test results with family members through the mediating effect of patient activation. Bridging disparities to ensure that genomic healthcare benefits all people may demand theory-driven, multi-level interventions targeting the individual, interpersonal, and healthcare system levels.