Kenneth P. Tercyak

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 (χ 2  = 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 (χ 2  = 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.

Maternal Communication of BRCA Risk to Adolescent and Young Adult Children: Implications for Supportive Care Intervention

ABSTRACT Background High‐risk mothers undergoing BRCA testing must decide whether, when, and how to disclose hereditary cancer risk information to their adolescent and young adult (AYA) children. Aims This study explored maternal preferences/values and cognitive‐affective factors influencing these decisions during genetic counseling. Methods Mothers ( N  = 282) reported on the perceived risks/benefits of AYA disclosure. Multivariable regression identified predictors of disclosure, and paired t ‐tests evaluated changes over time in maternal‐AYA communication, distress, and decisional conflict following genetic counseling. Results Mothers reported valuing the benefits of disclosure more than risks ( p  < 0.001). Those who valued disclosure tended to have female ( t  = −1.74, p  = 0.08) and older ( r  = 0.14, p  = 0.03) children but were less knowledgeable about cancer risk ( r  = −0.17, p  = 0.005). Conversely, mothers who perceived disclosure to AYAs as riskier tended to be non‐white ( t  = 1.80, p  = 0.072), Hispanic ( t  = 1.66, p  = 0.098), lower‐income ( t  = 2.56, p  = 0.011), and with younger children ( r  = −0.28, p  < 0.001) in poorer mental health ( r  = 0.12, p  = 0.047). These findings were reaffirmed though a multivariable regression model controlling for benefits (adjusted R 2  = 0.11; age B  = −1.09, p  < 0.001; mental health B  = 0.36, p  = 0.04). Post‐counseling, participants showed reduced decisional conflict ( t  = 2.4, p  = 0.009) but increased depression/anxiety ( t  = −1.4, p  = 0.08) and lower parent‐child relationship quality ( t  = 2.7, p  < 0.001). Conclusions Clinicians should be attuned to the factors shaping parental disclosure decisions and consider offering additional support to manage distress. Tailored educational tools for parents may aid family communication and improve psychosocial outcomes alongside genetic counseling.