title: Validity of self-reported genetic counseling and genetic testing use among breast cancer survivors.
abstract: BACKGROUND
  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.
  
  
  CONCLUSIONS
  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.
authors: 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.
authors: Heidi A
authors: HA
authors: Hamann
authors: Jasmin A
authors: JA
authors: Tiro
authors: Joanne M
authors: JM
authors: Sanders
authors: Trisha V
authors: TV
authors: Melhado
authors: Rachel K
authors: RK
authors: Funk
authors: Melissa Y
authors: MY
authors: Carpentier
authors: L Kay
authors: LK
authors: Bartholomew
authors: Keith E
authors: KE
authors: Argenbright
authors: Sally W
authors: SW
authors: Vernon
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001943:Breast Neoplasms / Q000175:diagnosis / Q000453:epidemiology / Q000235:genetics*; D005260:Female; D005817:Genetic Counseling / Q000706:statistics & numerical data*; D005820:Genetic Testing / Q000706:statistics & numerical data*; D006801:Humans; D008875:Middle Aged; D011237:Predictive Value of Tests; D015203:Reproducibility of Results; D057566:Self Report / Q000592:standards*; D017741:Survivors / Q000706:statistics & numerical data*
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