Validity of self-reported genetic counseling and genetic testing use among breast cancer survivors.

Hamann HA, Tiro JA, Sanders JM, Melhado TV, Funk RK, Carpentier MY, Bartholomew LK, Argenbright KE, Vernon SW.

Source

University of Texas Southwestern Medical Center and Harold C. Simmons Cancer Center, 5323 Harry Hines Blvd, Dallas, TX, 75390-9044, USA, heidi.hamann@utsouthwestern.edu.

Abstract

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.