Genetic education and peer support among Ashkenazi Jewish women in the United States at risk for and surviving with breast cancer

Abstract

Ashkenazi Jewish women are at significantly increased risk for hereditary breast and ovarian cancer (HBOC) due to the high prevalence of BRCA founder variants. Community-based organizations (CBOs) offer culturally tailored support through programs like peer support and genetic education, but limited research has explored how these services are offered and utilized in this population. Therefore, we conducted a secondary analysis of post-program survey data from N = 1054 women served by a national cancer support organization. Among high-risk Ashkenazi Jewish women (N = 429), we examined patterns of genetic education and peer support program offering and utilization, patient navigation (PN) quality, care satisfaction, and health-related quality of life (QoL). Among high-risk Ashkenazi Jewish women, 78% were offered peer support and 33% utilized it; 59% were offered genetic education and 17% utilized it. Notably, women with poorer QoL were significantly more likely to be offered (χ² = 8.06, p = 0.045) and utilize (t = −2.40, p = 0.009) peer support. Utilization of genetic education was more common among women with higher cancer risk (χ² = 5.94, p = 0.049). Both programs were viewed favorably among those who participated, with users reporting increased support and decision-making confidence. Women who were offered peer support reported significantly higher PN quality (t = 3.7, p < 0.001) and greater satisfaction with CBO care (t = 3.09, p = 0.001) than those not offered the service. Similarly, women offered genetic education reported significantly higher PN quality (t = 3.99, p < 0.001) and CBO care satisfaction (t = 5.38, p < 0.001) compared to those not offered the service. However, dual utilization of both programs was uncommon: among women offered both (N = 217) services, only 27% used both, suggesting potential barriers to concurrent engagement. CBO-led peer support and genetic education may improve care satisfaction and psychosocial outcomes for Ashkenazi Jewish women navigating HBOC. Future efforts should explore integrated models that reduce barriers to dual participation and enhance continuity of care across services.