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. 2021 Mar 12;7(1):7.
doi: 10.1186/s40738-021-00099-2.

Self-reported infertility diagnoses and treatment history approximately 20 years after fertility treatment initiation

Alesia M Jung  1 , Stacey A Missmer  2   3 , Daniel W Cramer  3   4 , Elizabeth S Ginsburg  4 , Kathryn L Terry  3   4 , Allison F Vitonis  4 , Leslie V Farland  5
Affiliations

Self-reported infertility diagnoses and treatment history approximately 20 years after fertility treatment initiation

Alesia M Jung et al. Fertil Res Pract. .

Abstract

Background: Infertility history may have important implications for clinical practice and scientific discovery. Previous research on the validity of self-reported infertility measurements has been limited in scope and duration (< 5 years). In this study, we validated self-reported infertility history measures 15-23 years after fertility treatment initiation among women who utilized assisted reproductive technology (ART).

Methods: Women who received ART treatments from three Boston infertility clinics and who enrolled in a prior study (1994-2003) were re-contacted in 2018 for the AfteR Treatment Follow-up Study (ART-FS). Infertility history was collected from clinical records and two self-report questionnaires (at ART initiation and at ART-FS enrollment). Treatment history included specific details (fresh or frozen embryo transfers, number of cycles) and treatment recall prior to ART initiation. Self-reported infertility diagnoses included polycystic ovary syndrome (PCOS), endometriosis, uterine factor infertility, tubal factor infertility, diminished ovarian reserve/advanced maternal age, male factor infertility, and other/unknown. We compared self-reported measures from 2018 to self-reported and clinical data from prior study initiation, using Cohen's kappa, sensitivity, specificity, and 95% confidence intervals.

Results: Of 2644 women we attempted to recontact, 808 completed the ART-FS, with an average follow-up of 19.6 years (standard deviation: 2.7). Recall of fertility treatment usage had moderate sensitivity (IVF = 0.85, Clomiphene/Gonadotropin = 0.81) but low specificity across different infertility treatment modalities (IVF = 0.63, Clomiphene/Gonadotropin = 0.55). Specific IVF details had low to moderate validity and reliability with clinical records. Reliability of recalled infertility diagnosis was higher when compared to self-report at ART initiation (PCOS K = 0.66, Endometriosis K = 0.76, Tubal K = 0.73) than when compared to clinical records (PCOS K = 0.31, Endometriosis K = 0.48, Tubal K = 0.62) and varied by diagnosis.

Conclusions: The ability of women to recall specific IVF treatment details was moderately accurate and recall of self-reported infertility diagnosis varied by diagnosis and measurement method.

Keywords: Assisted reproductive technology; InVitro fertilization; Endometriosis; Epidemiology; Fertility; Fertility treatment; infertility; validity; reliability; Polycystic ovary syndrome.

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Conflict of interest statement

The authors declare that they have no competing interests.

Figures

Fig. 1
Fig. 1
Description of data sources from AfteR Treatment Follow-up Study and IVF Study
Fig. 2
Fig. 2
AfteR Treatment Follow-up Study participants recontacted and recruited from the IVF Study
See this image and copyright information in PMC

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