Abstract A39: The consortium of underserved BRCA testers: A multisite collaboration to study underserved families at risk of hereditary breast and ovarian cancer

Background: Underserved families at risk of Hereditary Breast and Ovarian Cancer (HBOC) have decreased access to genetic cancer risk assessment (GCRA). Neither the process nor outcomes of GCRA have been carefully studied in large and diverse underserved populations. The Consortium of Underserved BRCA testers (CUB), formed in 2010 among three county hospitals, aims to rigorously study GCRA and patient outcomes at each site.

Methods: CUB's founding members are: San Francisco General Hospital (SF), Stroger Hospital of Cook County (Chicago), and Grady Memorial Hospital (Atlanta). Underserved patients are defined as low-income, low literacy, uninsured, and/or members of ethnic, racial and linguistic minority groups. Together we developed a common clinical and research protocol, with standardized intake forms, questionnaires, follow-up protocols, and research instrument delivery. Using mixed methods, we examined and compared referral patterns, demographics, and BRCA test results between sites. We used chart reviews and common data collection instruments to gather and pool data. Using descriptive and comparative statistics, we examined similarities and differences between Consortium sites.

Results: The GCRA programs in SF, Chicago, and Atlanta began 9, 6, and 3 years ago, respectively. Medicaid funding for BRCA testing has been available in SF since 2011, in Chicago since 2009, and is not yet available in Atlanta. Each site has a unique referral process for GRCA, including specialty and primary care clinics, mammography, and family members. Chi-squared analysis demonstrated significantly different referral patterns between each site (p <0.05). A total of 2,942 women have been referred to all sites since each program began and 636 women have received BRCA testing.

The ratio of women referred to women tested for a BRCA mutation is 4.0:1 in SF, 2.40:1 in Chicago, and 1.5:1 in Atlanta. Differences in these ratios relate to referral and outreach sources, as well as funding for BRCA testing. The percentage of women found to have BRCA mutations was similar at each site: 18% in SF, 16% in Chicago, and 13% in Atlanta. There were significant differences, however, in the ethnic and racial composition of the population tested between sites. In SF, 9% were African American, 21% were Asian, 41% were Caucasian, and 25% were Hispanic. In Chicago, 38% were African American, 7% were Asian, 25% were Caucasian, and 26% were Hispanic. In Atlanta, 67% were African American, 2% were Asian, 13% were Caucasian, and 5% were Hispanic.

Conclusions: Despite significant differences in referral patterns and Medicaid funding for BRCA testing, underserved women at all 3 public hospitals demonstrated similar BRCA positive rates, which are similar to positive rates at tertiary cancer centers and University hospitals. To our knowledge, this cohort of 636 BRCA testers is among the largest, most diverse population of its kind. In the future, CUB hopes to serve as a valuable resource to share best practices and investigate outcomes for underserved families at risk of HBOC.

Citation Information: Cancer Epidemiol Biomarkers Prev 2011;20(10 Suppl):A39.