Understanding Black women’s experiences with genetic services for ovarian cancer: A qualitative study (435)

Objectives: Studies have consistently demonstrated that Black women with ovarian cancer are less likely to obtain guideline- recommended genetic testing than other racial/ethnic groups. The current study sought to explore Black women’s experience with genetic testing during ovarian cancer care from the perspective of patients, providers, and genetic counselors. Methods: We conducted semi-structured interviews (n=20) with five patients, six physicians, four advanced practice providers, and five genetic counselors. The study was designed using Anderson’s Behavioral Model and the Public Health Critical Race Praxis as theoretical frameworks to inform our research design, data collection, and interpretation. Data were recorded, transcribed, and coded, and framework analysis was used to identify themes. Results: All five of the patients in the study completed genetic testing. For the providers, uptake of genetic services varied according to the practice location but ranged from 50-80% for genetic counseling and 40-95% for genetic testing. Most providers in our study felt that rates of genetic counseling and testing were similar for Black women compared to other racial/ethnic groups in their practice, except those providers who cared for Black ovarian cancer patients at safety-net hospitals. Four themes emerged from the data. First, participants felt that all women are too overwhelmed to prioritize genetic testing, but Black women also have daily experiences with racism that adds additional complexity to navigating cancer care. Second, Black women are unable to access genetic testing due to socioeconomic disadvantages related to a long history of structural racism in the U.S. Third, Black women may be unwilling to complete genetic testing due to mistrust of providers and the healthcare system. Finally, Black women are less likely to receive genetic services prior to their ovarian cancer diagnosis due to cultural barriers and provider misconceptions about Black women’s hereditary cancer risk. Conclusions: Our findings highlight that Black ovarian cancer patients are less likely to obtain genetic counseling and testing due to experiences with individual and structural racism. To increase uptake of genetic testing, it is critical that providers prioritize communication and patient education that is culturally responsive to the needs of Black women, as well as offer social supports to help Black women navigate their cancer care. Given the prevalence of hereditary cancer syndromes in ovarian cancer patients, as well as the impact that identification of a mutation has on cancer prevention, treatment, and survival, it is critical to ensure that genetic services are provided equitably to all women. Therefore, gynecologic oncology providers need education about the unique barriers Black women face in accessing genetic services so we may increase opportunities to provide guideline-concordant genetic services to Black women. Objectives: Studies have consistently demonstrated that Black women with ovarian cancer are less likely to obtain guideline- recommended genetic testing than other racial/ethnic groups. The current study sought to explore Black women’s experience with genetic testing during ovarian cancer care from the perspective of patients, providers, and genetic counselors. Methods: We conducted semi-structured interviews (n=20) with five patients, six physicians, four advanced practice providers, and five genetic counselors. The study was designed using Anderson’s Behavioral Model and the Public Health Critical Race Praxis as theoretical frameworks to inform our research design, data collection, and interpretation. Data were recorded, transcribed, and coded, and framework analysis was used to identify themes. Results: All five of the patients in the study completed genetic testing. For the providers, uptake of genetic services varied according to the practice location but ranged from 50-80% for genetic counseling and 40-95% for genetic testing. Most providers in our study felt that rates of genetic counseling and testing were similar for Black women compared to other racial/ethnic groups in their practice, except those providers who cared for Black ovarian cancer patients at safety-net hospitals. Four themes emerged from the data. First, participants felt that all women are too overwhelmed to prioritize genetic testing, but Black women also have daily experiences with racism that adds additional complexity to navigating cancer care. Second, Black women are unable to access genetic testing due to socioeconomic disadvantages related to a long history of structural racism in the U.S. Third, Black women may be unwilling to complete genetic testing due to mistrust of providers and the healthcare system. Finally, Black women are less likely to receive genetic services prior to their ovarian cancer diagnosis due to cultural barriers and provider misconceptions about Black women’s hereditary cancer risk. Conclusions: Our findings highlight that Black ovarian cancer patients are less likely to obtain genetic counseling and testing due to experiences with individual and structural racism. To increase uptake of genetic testing, it is critical that providers prioritize communication and patient education that is culturally responsive to the needs of Black women, as well as offer social supports to help Black women navigate their cancer care. Given the prevalence of hereditary cancer syndromes in ovarian cancer patients, as well as the impact that identification of a mutation has on cancer prevention, treatment, and survival, it is critical to ensure that genetic services are provided equitably to all women. Therefore, gynecologic oncology providers need education about the unique barriers Black women face in accessing genetic services so we may increase opportunities to provide guideline-concordant genetic services to Black women.