Challenges and Opportunities in Engaging Primary Care Providers in BRCA Testing: Results from the BFOR Study

Purpose Engaging primary care providers (PCPs) in BRCA1/2 testing and results disclosure would increase testing access. The BRCA Founder OutReach (BFOR) study is a prospective study of BRCA1/2 founder mutation screening among individuals of Ashkenazi Jewish descent that sought to involve participants’ PCPs in results disclosure. We used quantitative and qualitative methods to evaluate PCPs’ perspectives, knowledge, and experience disclosing results in BFOR. Methods Among PCPs nominated by BFOR participants to disclose BRCA1/2 results, we assessed the proportion agreeing to disclose. To examine PCP’s perspectives, knowledge, and willingness to disclose results, we surveyed 501 nominated PCPs. To examine PCPs’ experiences disclosing results in BFOR, we surveyed 101 PCPs and conducted 10 semi-structured interviews. Results In the BFOR study overall, PCPs agreed to disclose their patient’s results 40.5% of the time. Two hundred thirty-four PCPs (46.7%) responded to the initial survey. Responding PCPs were more likely to agree to disclose patients’ results than non-responders (57.3% vs. 28.6%, p <0.001). Among all respondents, most felt very (19.7%) or somewhat (39.1%) qualified to share results. Among PCPs declining to disclose, insufficient knowledge was the most common reason. In multivariable logistic regression, feeling qualified was the only variable significantly associated with agreeing to disclose results (OR 6.53, 95% CI 3.31, 12.88). In post-disclosure surveys (response rate=55%), PCPs reported largely positive experiences. Interview findings suggested that although PCPs valued the study-provided educational materials, they desired better integration of results and decision support into workflows. Conclusion Barriers exist to incorporating BRCA1/2 testing into primary care. Most PCPs declined to disclose their patients’ BFOR results, although survey respondents were motivated and had positive disclosure experiences. PCP training and integrated decision support could be beneficial. Trial Registration ClinicalTrials.gov (NCT03351803), November 24, 2017