A recent study from the Australian Women and Girls Health Research (AWaGHR) Centre at The University of Queensland has validated the accuracy of self-reported endometriosis diagnoses in large-scale cohort studies.
Published in Maturitas, the study used data from 8,572 Australian women from the Australian Longitudinal Study on Women’s Health (ALSWH) cohorts 1989-95 and 1973-78, and the Genetic variants, Early Life exposures, and Longitudinal Endometriosis Symptoms (GELLES) sub-study to examine how well women’s self-reported endometriosis diagnoses aligned with both surgical and clinical diagnoses.
“Our research has found that self-reported data can be a reliable tool for identifying endometriosis cases in epidemiological studies,” said lead author Dr Dereje Gete.
“This opens the door to understanding more about the condition and, hopefully, will empower more women to make informed decisions about treatment and diagnosis.”
In Australia, 1 in 7 women is estimated to be diagnosed with endometriosis by age 44-49. While laparoscopy (surgical diagnosis) is considered the gold standard, it can be costly and time-consuming. For many women, particularly those facing barriers to surgery, a clinical diagnosis based on symptoms may be more accessible.
The study confirmed that women who self-reported a surgical diagnosis showed high agreement with medical records. However, the validity of clinical diagnoses was lower due to more frequent discrepancies in case classification. These findings suggest that clinical diagnoses may require further validation in research contexts.
The results will help inform future women’s health research and contribute to efforts aimed at improving diagnostic pathways for endometriosis.
