Validation of self-reported endometriosis.

Area of Science:

• Reproductive Health
• Epidemiology
• Medical Diagnostics

Background:

• Self-reported diagnoses are frequently used in large-scale epidemiological studies.
• Endometriosis diagnosis can be challenging, often involving invasive procedures.
• Validating self-reported data is crucial for accurate research findings.

Purpose of the Study:

• To assess the validity and reliability of self-reported endometriosis diagnoses.
• To determine the accuracy of self-reported diagnoses compared to gold-standard medical records.
• To evaluate the utility of self-reported endometriosis data in epidemiological research.

Main Methods:

• Utilized data from 8572 women across two Australian birth cohorts (Genetic variants, Early Life exposures, and Longitudinal Endometriosis Symptoms Study - GELLES).
• Assessed validity using predictive values and reliability with kappa statistics.
• Validated self-reported diagnoses against longitudinal surveys and linked administrative records.

Main Results:

• Good agreement was found for overall self-reported endometriosis diagnosis (kappa values 0.67-0.70, corrected 0.83-0.86).
• Agreement was notably stronger for self-reported surgical diagnoses (kappa values 0.79-0.87, positive predictive values 0.84-0.85).
• Validity of clinically suspected diagnoses was lower due to higher discrepancies.

Conclusions:

• Self-reported endometriosis diagnoses, particularly those surgically confirmed, are valid and reliable.
• Self-reported data can be effectively used for identifying endometriosis cases in epidemiological studies.
• Clinically suspected endometriosis diagnoses reported by individuals should be interpreted with caution due to potential inaccuracies.