Validity of Self-reported Endometriosis

A Comparison Across Four Cohorts

A.L. Shafrir; L.A. Wise; J.R. Palmer; Z.O. Shuaib; L.M. Katuska; P. Vinayak; M. Kvaskoff; K.L. Terry; S.A. Missmer


Hum Reprod. 2021;36(5):1268-1278. 

In This Article


Overall, we observed that endometriosis is self-reported with reasonable accuracy (84% overall confirmation proportion, ranging from 72 to 95% among these cohorts), and reports of endometriosis confirmed by laparoscopy are exceptionally accurate (≥95%, ranging from 95 to 100% among these cohorts). Abstraction of more details was ineffective, as documentation of endometriosis presentation was often absent from medical records and lacking basic phenotypic details and consistent descriptions even when documented. This reinforces the need for harmonized clinical and surgical data documentation to further endometriosis care and discovery.