A B S T R A C T PurposeMutations in BRCA1/2 dramatically increase the risk of both breast and ovarian cancers. Three mutations in these genes (185delAG, 5382insC, and 6174delT) occur at high frequency in Ashkenazi Jews. We evaluated how these common Jewish mutations (CJMs) affect cancer risks and risk reduction. MethodsOur cohort comprised 4,649 women with disease-associated BRCA1/2 mutations from 22 centers in the Prevention and Observation of Surgical End Points Consortium. Of these women, 969 were self-identified Jewish women. Cox proportional hazards models were used to estimate breast and ovarian cancer risks, as well as risk reduction from risk-reducing salpingo-oophorectomy (RRSO), by CJM and self-identified Jewish status. ResultsNinety-one percent of Jewish BRCA1/2-positive women carried a CJM. Jewish women were significantly more likely to undergo RRSO than non-Jewish women (54% v 41%, respectively; odds ratio, 1.87; 95% CI, 1.44 to 2.42). Relative risks of cancer varied by CJM, with the relative risk of breast cancer being significantly lower in 6174delT mutation carriers than in non-CJM BRCA2 carriers (hazard ratio, 0.35; 95% CI, 0.18 to 0.69). No significant difference was seen in cancer risk reduction after RRSO among subgroups. ConclusionConsistent with previous results, risks for breast and ovarian cancer varied by CJM in BRCA1/2 carriers. In particular, 6174delT carriers had a lower risk of breast cancer. This finding requires additional confirmation in larger prospective and population-based cohort studies before being integrated into clinical care.

Approximately 12% of women living in the United States will be diagnosed with breast cancer during their lifetimes. While all women face formidable challenges posed by the threat of living with or at increased risk for breast cancer, those of Ashkenazi Jewish descent face additional challenges owing to higher BRCA1/2 mutation prevalence in this population. Amidst calls for population-based screening for hereditary breast cancer risk, much can be learned from the experiences of Jewish women about their needs. The present study is a secondary analysis of psychoeducational program satisfaction and evaluation data previously collected by a community organization dedicated to serving women of all Jewish backgrounds facing, or at risk for, breast cancer. Among respondents (n = 347), over one-third were referred to the organization by family or friends, most often after a cancer crisis. Of the information and support resources offered, the greatest level of engagement occurred with the one-on-one peer support and health care symposia resources. Respondents endorsed high levels of satisfaction with the programs and services, and a strong desire to give back to the community. These data suggest that culturally-relevant information and support services for Jewish women could be scaled-up for larger dissemination to meet the anticipated needs in this special population.

Approximately 11% of all new breast cancer cases in the USA occur in women aged 45 years or younger. In 2011, CDC funded seven organizations to develop or enhance programs for young breast cancer survivors (YBCS). This paper analyzed program evaluation data collected by one of these organizations to gain a more nuanced understanding of how recipients used the newly developed program and resources for YBCS. Sharsheret’s Thriving Again program was evaluated through a web-based survey of survivorship program participants. The evaluation asked questions about participant demographics, use of the kit’s survivorship care plan (SCP), satisfaction with the timing of survivorship kit receipt, and factors related to survivors’ use of additional Sharsheret programs. We conducted bivariate analyses of survey responses and calculated chi-square statistics for significance testing. Of the 163 women who responded to the survey, 43% were diagnosed with breast cancer at or before age 45 and 69% were of Jewish descent. The majority of women who used the SCP found it helpful to facilitate cancer treatment (94%), follow-up (85%), or discussions with providers (91%). A total of 75% of women who received the SCP kit while either recently diagnosed or undergoing treatment were satisfied with the timing of receipt. Survey respondents found the Thriving Again program and survivorship kit beneficial and indicated timing preferences for when to receive resources and support. Supporting the self-efficacy of cancer survivors may improve survivors’ quality of life and is an important aspect of survivorship programs.

Introduction/Objectives: Research demonstrates that after a breast cancer diagnosis, young women, especially those of racial and ethnic groups, may experience a more negative impact on their quality of life, emotional functioning, and reproductive health than older women. For women under the age of 45, African American women have the highest breast cancer incidence of any racial/ethnic group, and there is an increased risk of hereditary breast cancer among Jews who carry BRCA mutations. In conjunction with Sisters Network Inc. and Sharsheret, The Centers for Disease Control and Prevention launched a formative evaluation to understand African American and Jewish young breast cancer survivors' (YBCS) psychosocial and reproductive health needs and preferred communication channels to obtain needed health information. Methods: Sisters Network Inc. conducted four focus groups with African American YBCS. Sharsheret conducted four groups with Jewish YBCS. Thematic analysis identified major themes/patterns within and across the focus groups. Results: Fertility and sexual health were major YBCS concerns. Participants reported barriers to obtaining psychosocial and reproductive health information, including sexual taboos and lack of provider sensitivity to address these needs. Participants said that breast cancer resources are not tailored to YBCS. Participants preferred to receive breast cancer information via multiple channels, including written materials, the Internet, telephone and smartphone applications. Discussion/Implications: African American and Jewish women encounter similar barriers to obtaining psychosocial and reproductive health information. Both groups report difficulty in obtaining relevant health information and advice from their medical providers. Study findings may be used for developing of culturally-appropriate communication and interventions for YBCS that would help eliminate breast cancer health disparities in YBCS. Citation Format: Temeika L. Fairley, Natasha Buchanan, Ashani Johnson-Turbes, Leslie R. Schover, Angela R. Moore, Brandie Yancy, Dara Schleuter, Mary-Ann K. Hall, Kelly P. Hodges, Rochelle Shoretz. Developing culturally appropriate interventions providing psychosocial and reproductive health support to young breast cancer survivors: Evaluation findings. [abstract]. In: Proceedings of the Sixth AACR Conference: The Science of Cancer Health Disparities; Dec 6–9, 2013; Atlanta, GA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2014;23(11 Suppl):Abstract nr C32. doi:10.1158/1538-7755.DISP13-C32

Background. Young women diagnosed with breast cancer face challenges impacting their quality of life, psychosocial functioning, and reproductive health outcomes. Ashkenazi Jewish women experience a disproportionately high prevalence of genetic mutations in the BRCA1/2 genes linked to a higher incidence of hereditary breast and ovarian cancer, and have unique needs based on genetic risk and cultural factors. Sharsheret, a national not-for-profit organization with an expertise in supporting Jewish young breast cancer survivors (YBCS), developed two interventions, the Peer Support Network (PSN) and Genetics for Life® (GFL), to address the culturally specific needs of Jewish YBCS. In 2011, Sharsheret conducted a formative evaluation to strengthen its existing PSN and GFL interventions. Methods. Four focus groups were conducted with 27 YBCS having participated in the PSN or GFL. The groups investigated the information and support needs of YBCS of Jewish descent and YBCS perceptions of PSN and GFL content, materials and delivery channels. Two groups (online and in-person) investigated the needs of YBCS, PSN and GFL program content, and PSN and GFL program delivery related to the psychosocial health of YBCS. Two groups (online and in-person) explored YBCS needs, PSN and GFL program content, and PSN and GFL program delivery related to the reproductive health of YBCS. Participants were recruited using in-person methods, email blasts, social media and via Sharsheret website postings. Qualitative data were analyzed using a notes-based thematic analysis. Results. Across groups, respondents identified the primary information needs for YBCS included resources addressing genetics, side effects and consequences of treatment (e.g., effects on fertility, intimacy and premature menopause) rather than treatment itself. Respondents identified that their support needs included culturally relevant peer support and genetic resources at the time of diagnosis, treatment and after treatment, as well as support for partners, family members and friends. Participants preferred to receive information and support through diverse modalities, including health care providers, the internet, peer supporters, support groups, symposia and teleconferences and mass media. Respondents recommended outreach efforts for the PSN and GFL interventions in locations that attract young people, including pediatricians’ offices, schools, salons, and college campuses, and to clergy, school principals, local Jewish organizations and health care providers. Participants also suggested potential technology-based modifications to PSN and GFL intervention delivery, including online intake forms, a LiveChat option, video testimonials, interactive expert column, online pedigrees and family conference calls with a genetic counselor or clinical staff member. Conclusion. YBCS identified the PSN and GFL interventions as critical resources attentive to their culturally specific information and support needs. Focus group participants provided strategies to enhance intervention content and reach. Healthcare professionals serving YBCS of diverse backgrounds can utilize the data gleaned from this evaluation to shape culturally relevant interventions and materials to address the unique needs of YBCS. Citation Format: Rochelle Shoretz, Adina Fleischmann, Elana Silber, Mary Ann Hall, Ashani Johnson-Turbes. Formative evaluation of interventions addressing culturally relevant needs of young breast cancer survivors [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P1-17-05.