Journal of Cancer Survivorship

, Volume 7, Issue 4, pp 624–629 | Cite as

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

  • Heidi A. Hamann
  • Jasmin A. Tiro
  • Joanne M. Sanders
  • Trisha V. Melhado
  • Rachel K. Funk
  • Melissa Y. Carpentier
  • L. Kay Bartholomew
  • Keith E. Argenbright
  • Sally W. Vernon
Article

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.

Keywords

Genetic counseling Genetic testing Electronic medical record Validation 

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Copyright information

© Springer Science+Business Media New York 2013

Authors and Affiliations

  • Heidi A. Hamann
    • 1
  • Jasmin A. Tiro
    • 1
    • 2
  • Joanne M. Sanders
    • 1
  • Trisha V. Melhado
    • 1
  • Rachel K. Funk
    • 1
  • Melissa Y. Carpentier
    • 2
  • L. Kay Bartholomew
    • 2
  • Keith E. Argenbright
    • 1
    • 3
  • Sally W. Vernon
    • 2
  1. 1.University of Texas Southwestern Medical Center and Harold C. Simmons Cancer CenterDallasUSA
  2. 2.University of Texas School of Public HealthHoustonUSA
  3. 3.Moncrief Cancer InstituteFort WorthUSA

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