The ENDO GAP : The current state of knowledge of menstruating people about Endometriosis in Germany - an exploratory mixed-method study

Abstract

This study examines both perceived and actual knowledge of Endometriosis among menstruating individuals in Germany, incorporating insights from those possibly affected and healthcare professionals through a mixed methods approach. The initial phase employs an online survey analysed through descriptive statistics and ordinal logistic regression. The subsequent qualitative phase involves expert interviews, with analysis guided by Kuckartz and Rädicker's qualitative content analysis method, allowing for a thorough contextualisation and exploration of themes and patterns. Globally, Endometriosis affects one in ten menstruating individuals of reproductive age, with prevalence rates between 8 % and 15 %, increasing to 50 % among involuntarily childless individuals. For Germany, data on the prevalence of Endometriosis are still imprecise (Sarria-Santamera et al., 2020); however, its incidence is estimated to be up to 40,000 new cases annually (Moritz et al., 2020). The diagnosis of Endometriosis in Germany specifically exceeds the European average, often delayed by more than ten years, with a misdiagnosis rate increased by socio-cultural and medical factors. The study indicates that participants demonstrate good self-awareness about Endometriosis, yet they would only classify their knowledge as sufficient. Simultaneously, when subjected to a structured knowledge test, the results reveal that participants possess a deeper understanding than initially perceived. This suggests a need for more effective education that enable individuals to more critically assess and reflect on their knowledge. Barriers such as societal taboos, insufficient information sources and a lack of empathy among healthcare providers complicate information access. The research further reveals an enhanced awareness of menstrual health driven by digital media, which, while expanding access to information, also raises issues of misinformation. A strong correlation has been identified between comprehensive menstrual education and increased awareness and knowledge of Endometriosis. Notably, younger generations exhibit fewer taboos and greater openness due to growing up with more accessible online resources, though this also brings challenges of misinformation. The study highlights the importance of targeted menstrual education tailored to different demographics to enhance understanding of Endometriosis and ensure reliable information reaches a broader audience. This approach could help bridge the significant knowledge gaps and contribute to earlier diagnosis and better disease management, thereby addressing the current challenges in Endometriosis care and awareness.