Talia Zamir, Muriel R. Statman, Marcelo M. Sleiman Jr., Duye Liu, Adina Fleischmann, Elana Silber, Kenneth P. Tercyak
{"title":"美国德系犹太妇女乳腺癌风险和存活风险的遗传教育和同伴支持。","authors":"Talia Zamir, Muriel R. Statman, Marcelo M. Sleiman Jr., Duye Liu, Adina Fleischmann, Elana Silber, Kenneth P. Tercyak","doi":"10.1002/jgc4.70121","DOIUrl":null,"url":null,"abstract":"<p>Ashkenazi Jewish women are at significantly increased risk for hereditary breast and ovarian cancer (HBOC) due to the high prevalence of <i>BRCA</i> 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 <i>N</i> = 1054 women served by a national cancer support organization. Among high-risk Ashkenazi Jewish women (<i>N</i> = 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<sup>2</sup> = 8.06, <i>p</i> = 0.045) and utilize (<i>t</i> = −2.40, <i>p</i> = 0.009) peer support. Utilization of genetic education was more common among women with higher cancer risk (χ<sup>2</sup> = 5.94, <i>p</i> = 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 (<i>t</i> = 3.7, <i>p</i> < 0.001) and greater satisfaction with CBO care (<i>t</i> = 3.09, <i>p</i> = 0.001) than those not offered the service. Similarly, women offered genetic education reported significantly higher PN quality (<i>t</i> = 3.99, <i>p</i> < 0.001) and CBO care satisfaction (<i>t</i> = 5.38, <i>p</i> < 0.001) compared to those not offered the service. However, dual utilization of both programs was uncommon: among women offered both (<i>N</i> = 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.</p>","PeriodicalId":54829,"journal":{"name":"Journal of Genetic Counseling","volume":"34 5","pages":""},"PeriodicalIF":1.9000,"publicationDate":"2025-10-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12516022/pdf/","citationCount":"0","resultStr":"{\"title\":\"Genetic education and peer support among Ashkenazi Jewish women in the United States at risk for and surviving with breast cancer\",\"authors\":\"Talia Zamir, Muriel R. Statman, Marcelo M. Sleiman Jr., Duye Liu, Adina Fleischmann, Elana Silber, Kenneth P. Tercyak\",\"doi\":\"10.1002/jgc4.70121\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p>Ashkenazi Jewish women are at significantly increased risk for hereditary breast and ovarian cancer (HBOC) due to the high prevalence of <i>BRCA</i> 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 <i>N</i> = 1054 women served by a national cancer support organization. Among high-risk Ashkenazi Jewish women (<i>N</i> = 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<sup>2</sup> = 8.06, <i>p</i> = 0.045) and utilize (<i>t</i> = −2.40, <i>p</i> = 0.009) peer support. Utilization of genetic education was more common among women with higher cancer risk (χ<sup>2</sup> = 5.94, <i>p</i> = 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 (<i>t</i> = 3.7, <i>p</i> < 0.001) and greater satisfaction with CBO care (<i>t</i> = 3.09, <i>p</i> = 0.001) than those not offered the service. Similarly, women offered genetic education reported significantly higher PN quality (<i>t</i> = 3.99, <i>p</i> < 0.001) and CBO care satisfaction (<i>t</i> = 5.38, <i>p</i> < 0.001) compared to those not offered the service. However, dual utilization of both programs was uncommon: among women offered both (<i>N</i> = 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. 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引用次数: 0
摘要
由于BRCA创始人变异的高流行率,德系犹太妇女患遗传性乳腺癌和卵巢癌(HBOC)的风险显著增加。社区组织(cbo)通过同伴支持和基因教育等项目提供适合文化的支持,但有限的研究探索了如何在这一人群中提供和利用这些服务。因此,我们对一个国家癌症支持组织服务的N = 1054名妇女的项目后调查数据进行了二次分析。在高危德系犹太妇女(N = 429)中,我们检查了遗传教育和同伴支持计划的提供和利用、患者导航(PN)质量、护理满意度和健康相关生活质量(QoL)的模式。在高危德系犹太妇女中,78%的人得到同伴支持,33%的人利用了这种支持;59%的人接受过遗传教育,17%的人利用了遗传教育。值得注意的是,生活质量较差的女性更有可能获得同伴支持(χ2 = 8.06, p = 0.045)和利用同伴支持(t = -2.40, p = 0.009)。在癌症风险较高的女性中,遗传教育的使用更为普遍(χ2 = 5.94, p = 0.049)。这两个项目在参与者中都得到了好评,用户表示支持度和决策信心都有所提高。提供同伴支持的妇女报告的PN质量显著提高(t = 3.7, p
Genetic education and peer support among Ashkenazi Jewish women in the United States at risk for and surviving with breast cancer
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.
期刊介绍:
The Journal of Genetic Counseling (JOGC), published for the National Society of Genetic Counselors, is a timely, international forum addressing all aspects of the discipline and practice of genetic counseling. The journal focuses on the critical questions and problems that arise at the interface between rapidly advancing technological developments and the concerns of individuals and communities at genetic risk. The publication provides genetic counselors, other clinicians and health educators, laboratory geneticists, bioethicists, legal scholars, social scientists, and other researchers with a premier resource on genetic counseling topics in national, international, and cross-national contexts.