In the United States, ovarian cancer accounts for approximately 2.1% of all cancer deaths, with more deaths than any other cancer of the reproductive system in women. According to the National Cancer Institute, approximately 1.1% of women will be diagnosed with ovarian cancer during their lifetime. After diagnosis, all patients with epithelial ovarian cancer (EOC) are recommended for genetic counseling as part of their clinical workup per National Comprehensive Cancer Network (NCCN) guidelines. Receiving genetic testing can be crucial not only to an EOC patient’s treatment following first-line platinum chemotherapy, but to inform family members of their potential risks as well.

The objective of this project is to understand the observed concordance between ovarian cancer survivors' self-reported genetic testing results and the medical record genetic testing report.

The Ovarian Health & Lifestyle Study (OHLS) follows newly diagnosed ovarian cancer patients to understand how lifestyle factors (e.g. exercise, diet, and supplement use) impact quality of life and long-term survival. We collect data using self-report questionnaires administered to participants across various timepoints. Data on genetic testing status, understanding of test results, and mutations in the BRCA1 and BRCA2 genes were collected. Medical record data was manually abstracted using a structured abstraction tool to obtain information on germline genetic testing status and results.

Self-reported genetic testing was compared to the medical record data to calculate the observed concordance. There was 94% agreement between self-report and medical record receipt of genetic testing, including 159 questionnaires from 68 participants. Among the 61 EOC survivors, 58 (95%) reported ever having received genetic testing, with 50 (86%) of those participants reporting ever knowing what genes they were tested for. Moving forward, we plan to conduct additional investigations into the barriers and facilitators that may impact ovarian cancer patients' understanding of their genetic profiles.