Background
Breast cancer (BC) disparities may widen with genomic advances. We compared non-Hispanic white (NHW), Black, and Hispanic BC survivors for: 1) cancer risk management practices (CRM) among BRCA carriers; and 2) provider discussion and receipt of genetic testing.
Methods
A population-based sample of NHW, Black, and Hispanic women diagnosed with invasive BC ≤ age 50 in 2009–2012 were recruited through the state cancer registry. Using multiple logistic regression we compared CRM in BRCA carriers and association of demographic and clinical variables with provider discussion and receipt of testing.
Results
Of the 1622 participants, 36.1% (159/440) Blacks, 64.5% (579/897) NHW, 49.6% (58/117) Spanish-speaking Hispanics, and 69.0% (116/168) English-speaking Hispanics had BRCA testing, of whom 90 had a pathogenic BRCA mutation. Among BRCA carriers, RRM and RRSO rates were significantly lower among Blacks compared to Hispanics and NHW after controlling clinical and demographic variables (p=0.025 and 0.008, respectively). Compared to NHW, discussion of genetic testing with a provider was 16 times less likely among Blacks (p<0.0001) and nearly two times less likely among Spanish-speaking Hispanics (p=0.04) after controlling clinical and sociodemographic factors.
Conclusions
Our results suggest lower rates of RRSO among Black compared to Hispanic and NHW BRCA carriers, which is concerning as benefits from genetic testing arise from CRM options. Furthermore, lower BRCA testing rates among Blacks may partially be due to lower likelihood of provider discussion. Future studies are needed to improve cancer risk identification and management practices across all populations to prevent the widening of disparities.
This study compared facilitators and barriers to genetic testing and determined awareness about the Genetic Information Nondiscrimination Act (GINA) across young Hispanic and non-Hispanic white (NHW) breast cancer (BC) survivors. Materials and Methods: Women diagnosed with BC of age £50 years in 2009-2012 were recruited through the Florida State Cancer Registry to complete a questionnaire. Results: There were 1182 participants of which 61% (174/285) of Hispanic patients, and 65% (580/897) of NHW patients had BC testing. Among untested participants, the most common barriers were lack of testing recommendation (44% Hispanics, 32% NHW; p = 0.02) and cost-related concerns (41% Hispanics, 40% NHW; p = 0.83). Among tested participants, the top facilitators were as follows: (1) ''To benefit my family's future'' (70% Hispanic, 68% NHW), (2) ''My doctor recommended testing'' (60% Hispanic, 54% NHW), and (3) ''Minimal cost to me'' (59% Hispanic, 72% NHW). Only 27% of tested and 15% of untested women were aware of GINA; misuse of test results was reported as a barrier for only 6.5%. Conclusions: Rates of genetic testing recommendation are lower among Hispanics, but both groups reported additional barriers. Most are unaware of GINA, yet misuse is not a highly cited barrier. Findings suggest the need to educate providers on the importance of recommending testing to all who meet criteria; increase awareness of newer options for more affordable testing; and bolster facilitators that may increase testing uptake.
Background: Increasing demand for genetic testing for inherited cancer risk coupled with a shortage of providers trained in genetics highlight the potential for automated tools embedded in the clinic process to meet this demand. We developed and tested a scalable, easy-to-use, 12-minute web-based educational tool that included standard pretest genetic counseling elements related to panel-based testing for multiple genes associated with cancer risk. Methods: The tool was viewed by new patients at the Vanderbilt Hereditary Cancer Clinic before meeting with a board-certified genetics professional. Pre- and post-tool surveys measured knowledge, feeling informed/empowered to decide about testing, attitudinal values about genetic testing, and health literacy. Of the initial 100 participants, 50 were randomized to only have knowledge measured on the post-tool survey to assess for a priming effect. Results: Of 360 patients approached, 305 consented and completed both the pre- and post-tool surveys, with a mean age of 47 years, including 80% female patients and 48% patients with cancer. Survey results showed an increase in knowledge and feeling informed/empowered after viewing the tool (P<.001), but no significant change in attitude (P=.64). Post-tool survey data indicated no difference in median knowledge between low and high health literacy groups (P=.30). No priming effect was present among the initial 100 participants (P=.675). Conclusions: Viewing the educational tool resulted in significant gains in knowledge across health literacy levels, and most individuals felt informed and empowered to decide about genetic testing. These findings indicate that the use of an automated pretest genetic counseling tool may help streamline the delivery of genetic services.
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