Validity of self-reported endometriosis and endometriosis-related questions in a Swedish female twin cohort

Rama Saha, Saha R, Lena Marions, Per Tornvall, Tornvall P
Fertility and sterility · 2016 · vol. 107(1) , pp. 174–178.e2 · doi:10.1016/j.fertnstert.2016.09.038 · PMID:27793372 · W2536478098
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This study assessed the accuracy of self-reported endometriosis diagnoses and related questions within a Swedish female twin cohort.

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Abstract

ObjectiveTo examine the validity of self-reported endometriosis and to improve the reliability of questionnaires by including endometriosis-related questions.DesignAnalysis of survey questionnaire data.SettingCross-sectional study.Patient(s)Cohort of 26, 898 female twins aged 20-60 years at interview, who participated in either of two surveys (1998-2002 or 2005-2006).Intervention(s)None.Main outcome measure(s)Endometriosis diagnosis in the Swedish National Inpatient Registry (IPR).Result(s)The self-reported endometriosis diagnoses and endometriosis-related questions from a nationwide population-based twin registry were linked with the IPR. Fairly good agreement was found between the self-reported and IPR data on endometriosis. The receiver operating characteristics (ROC) curves showed fairly good predictive ability of self-reported endometriosis to have a confirmed endometriosis diagnosis in the IPR with an area under the curve (AUC) 0.79 (95% confidence interval [CI], 0.77-0.81). Further, the predictive ability increased to AUC 0.89 (95% CI, 0.88-0.90) when there was additional information about infertility and age.Conclusion(s)Our results indicate that self-reported data on endometriosis are moderately accurate and may be useful in studies when register data are not available.

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Condition tags

endometriosis

MeSH descriptors

Diseases in Twins Endometriosis Self Report Adult Area Under Curve Cross-Sectional Studies Diseases in Twins Diseases in Twins Endometriosis Endometriosis Female Humans Middle Aged Predictive Value of Tests Registries Reproducibility of Results ROC Curve Sweden Sweden Young Adult

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