Incidence and remission of endometriosis in Germany based on prevalence data from 35 million patients from the statutory health insurance

Abstract Endometriosis is a chronic gynecological disease that can potentially develop as early as birth and can restrict the life of the patient. With the increasing prevalence of endometriosis in Germany, it has recently gained attention and priority for consideration. While numerous studies have examined endometriosis in Germany and other countries, studies on its incidence and remission rates are rare. Therefore, this study aimed to estimate the incidence and remission rates of endometriosis based on its age-specific prevalence in German women from 2012 to 2022. This study utilized data from the Central Institute (Zi) for Statutory Health Insurance (SHI) in Germany [1], which observed more than 35 million SHI-insured adolescents and women aged ≥ 10 years in 2012 and 2022, to determine the age-specific prevalence of ascertained diagnoses of endometriosis. The Illness-Death Model was used to estimate the incidence and remission rates of endometriosis. The estimation is based on a bootstrapping approach with 5000 replicates-samples. Results are the median incidence and remission rates, reported with 95% confidence intervals (CIs) based on 2.5% and 97.5% percentiles-quantiles, which quantify the uncertainty of the estimated incidence and remission rates. The bootstrapping approach estimated the incidence (median incidence across all bootstrap samples) about 1.73 per 1,000 person-years at around age of 32 years, and the highest remission rate was about 70.04 at the age of 52 years. The estimated 95% (CI) for the incidence and remission rates were (95% CI 1.71–1.78) and (95% CI 68.1–75.0), respectively. The Illness-Death Model and the prevalence of endometriosis from the Zi enabled the incidence rate of ascertained endometriosis for German women to be estimated. This study was the first to estimate the remission rate of endometriosis in Germany, aiming to better understand the condition.