Development and initial validation of a fertility experiences questionnaire

Background Many women throughout the world have history of subfertility (resolved or unresolved), but much remains unknown about services and treatments chosen. Methods We developed a mixed-mode fertility experiences questionnaire (FEQ) in 2009 through literature review and iterative pilot work to optimize question format and mode of administration. The focus of the FEQ is to collect data retrospectively on time at risk for pregnancy, fertility treatments received and declined, pregnancy, time to pregnancy and pregnancy outcomes. We conducted a validation of key elements of the FEQ with comparison to medical records in 2009 and 2010. The validation sample was selected from women initially seen at a specialized fertility treatment center in Utah in 2004. Results The FEQ was optimized with two components: 1) written (paper or web-based), self-administered, followed by 2) telephone- administered questions. In 63 patients analyzed, high levels of correlation were identified between patient self-report and medical records for the use of intrauterine insemination and assisted reproductive technology, pregnancy and live birth histories, time at risk for pregnancy and time to pregnancy. There was low correlation between medical records and self-report for the use of oral ovulation drugs and injectable ovulation drugs. Compared to the medical record, the FEQ was over 90 % sensitive for all elements, except injectable ovulation drugs (70 % sensitivity). Conclusions The FEQ accurately captured elements of fertility treatment history at 5–6 years after the first visit to a specialty clinic. Electronic supplementary material The online version of this article (doi:10.1186/s12978-015-0054-3) contains supplementary material, which is available to authorized users.