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Most Women Undergoing BRCA Genetic Testing Do Not Receive Pretest Genetic Counseling

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Key Points

  • Genetic counseling was received by only 36.8% of respondents.
  • The most commonly reported reason for not receiving counseling was lack of clinician recommendation.

In the ABOUT study reported in JAMA Oncology, Armstrong et al found that the majority of BRCA-tested women in a commercially insured population responding to a questionnaire about their experience had not received genetic counseling from a genetics clinician prior to testing. The study was supported by Aetna.

Study Details

In the study, Aetna mailed study recruitment information to 11,159 consecutive women nationwide whose clinicians had ordered BRCA testing between December 2011 and December 2012. Of these, 3,874 women (34.7%) completed questionnaires regarding BRCA testing.

Among 3,628 respondents whose clinicians ordered comprehensive BRCA testing, most were non-Hispanic whites (69.0%), college educated (81.4%), and married (75.8%) and most had higher incomes (55.4%). Overall, 16.4% did not meet testing criteria; of these, 81.0% did not receive genetic counseling. BRCA mutations were identified in 5.3% of women receiving comprehensive testing.

Rate of Genetic Counseling

Overall, genetic counseling by a genetics clinician was received prior to testing by 36.8% of women receiving comprehensive testing. By specialty of clinicians ordering the testing, the reported rates of counseling were 56.0% for oncology, 49.3% for internal medicine, 37.2% for surgery, 36.9% for family practice, 30.1% for radiology, and 12.3% for obstetrics/gynecology. The most commonly reported reason for not receiving genetic counseling was absence of clinician recommendation.

Women who received counseling exhibited greater knowledge about BRCA (P < .001) and indicated greater understanding of information they received prior to testing (P < .001), as well as greater satisfaction (P < .001) across such measures as whether their genetics counselor or other clinician “explained things clearly,” “listened to what I had to say,” “used language I understood,” “provided new information,” “really understood my concerns,” “cares for me,” “lessened my worries,” and “helped me cope better.”

The investigators concluded: “Despite improved patient knowledge, understanding, and satisfaction among patients who receive genetic counseling provided by a genetics clinician, as well as multiple guidelines emphasizing the importance of genetic counseling, most US women undergoing BRCA genetic testing do not receive this clinical service. Lack of physician recommendation is the most commonly reported reason. These findings demonstrate important gaps in clinical genetics services. Recently mandated coverage of genetic counseling services as a preventive service without patient cost sharing should contribute to improving clinical genetics services and associated outcomes in the future.”

Rebecca Sutphen, MD, of University of South Florida Morsani College of Medicine, is the corresponding author for the JAMA Oncology article.

The study was supported by the Aetna Foundation, Aetna, University of South Florida, Facing Our Risk of Cancer Empowered, Inc (FORCE), and American Cancer Society. For full disclosures of the study authors, visit oncology.jamanetwork.com.

The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.


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