Validity of self-reported genetic counseling and genetic testing use among breast cancer survivors
Heidi A Hamann1, Jasmin A Tiro, Joanne M Sanders
1University of Texas Southwestern Medical Center and Harold C. Simmons Cancer Center, 5323 Harry Hines Blvd, Dallas, TX, 75390-9044, USA, heidi.hamann@utsouthwestern.edu.
Introduction:
Despite the value of genetic counseling (GC) and genetic testing (GT) for high-risk breast cancer survivors, little is known about their uptake and validity of self-report data. This study evaluated the accuracy of self-reported genetic counseling and testing rates among breast cancer survivors.
Methods:
The current analysis focused on Stage 0-III female breast cancer survivors who were identified from an academic medical center's cancer registry and responded to a mailed survey (N = 452). Self-reported rates of GC and GT were validated using information from the electronic medical record.
Results:
Overall, 30.8 % of survivors reported having seen a genetic counselor in the time period after their breast cancer diagnosis and 33.6 % noted having a genetic test. Concordance and specificity were good for both genetic questions; concordance agreements ranged from 86-88 %, while specificity was 83-86 %. Sensitivity (97-98 %) and negative predictive values (99 %) were excellent, while the positive predictive values for both GC and GT were poor (59-63 %).
Conclusions:
Among breast cancer survivors, self-reports of GC and GT were generally accurate, although a subset of respondents overestimated genetic service utilization. Future work should focus on validating GC and GT self-reports in medically underserved populations.
Implications For Cancer Survivors:
Genetic counseling and testing are valuable aspects of survivorship care for high-risk breast cancer survivors; accurate understanding of their use is important for survivors, clinicians, and researchers.
