Validation of maternal self-report of assisted reproductive technology use at the Massachusetts site of the National Birth Defects Prevention Study

We conducted a validation study to determine the accuracy of maternal self-reported use of assisted reproductive technology (ART) from Massachusetts (MA) participants in the National Birth Defects Prevention Study (NBDPS) compared with data from ART clinics. MA NBDPS participants delivering between July 1, 2004 and January 3, 2008 (n=1,263) were matched to records in the Society for Assisted Reproductive Technology Clinic Outcome Reporting System (SART CORS) online database. Sensitivity and specificity were calculated to measure accuracy of reported ART use in NBDPS data compared with use recorded in the SART CORS data. For variables without a clear gold standard, Cohen's kappa was used to measure agreement. Sixty-four (5%) of the NBDPS records matched to records in the SART CORS database. NBDPS reporting of ART showed high sensitivity (92%) with use reported for all 64 mothers in the SART CORS database. NBDPS reporting of donor egg use showed sensitivity of 80% and specificity of 100%. Sensitivity of NBDPS-reported use of frozen embryos and frozen eggs was low (50% for each), but specificity was high (98% and 100%, respectively). Sensitivity for use of intracytoplasmic sperm injection (ICSI) was low (30%), but specificity was high (94.6%). There was 100% sensitivity for multiple births, with excellent agreement between the databases (kappa=0.97). NBDPS mothers accurately reported use of ART, but there was low sensitivity for reported use of several procedures, including ICSI, likely due to the lack of specific NBDPS questions.