THE ENDO GAP: The current state of knowledge of menstruating people about Endometriosis in Germany – An exploratory mixed methods study

- QUANTITATIVE RESULTS - QUALITATIVE Discrepancies between perceived and actual Endometriosis knowledge Key predictors Endometriosis knowledge: Menstrual knowledge (OR = 9.8; 95 %; CI: 0.6 – 3.9; p = 0.007) Age (OR = 4.2; 95 %; CI: 0.2 – 2.6; p = 0.018) University (OR = 1.3; 95 %; CI: 0.6 – 5.8; p = 0.017) Internet (OR = 2.2; 95 %; CI: 0.03 – 1.5; p = 0.041) 8 % of the varience in Endometriosis is explained by the model Enhanced awareness of menstrual health driven by digital media Younger generations exhibit fewer taboos and greater openness due to growing up with more accessible ressources Increased Endometriosis awareness and knowledge due to enhanced menstrual health awareness Expanded information access may lead to misinformation Hudelist, G., Fritzer, N., Thomas, A., Niehues, C., Oppelt, P., Haas, D., Tammaa, A., & Salzer, H. (2012). Diagnostic delay for endometriosis in Austria and Germany: Causes and possible consequences. Human Reproduction (Oxford, England), 27(12), 3412–3416. https://doi.org/10.1093/humrep/des316 Kuckartz, U., & Rädiker, S. (2022). Qualitative Inhaltsanalyse: Methoden, Praxis, Computerunterstützung: Grundlagentexte Methoden (5. Auflage). Beltz Juventa. Moritz, A., Bierschneider, B., Bambeck, M., Männel, N., & Röhrig, M. (2020, December). Basiswissen Endometriose. Endometriose-Vereinigung Deutschland e.V. https://www.uniklinik-duesseldorf.de/fileadmin/Fuer-Patienten-und Besucher/Kliniken-ZentrenInstitute/Kliniken/Klinik_fuer_Frauenheilkunde_und_Geburtshilfe/Unsere%20Zentr THE ENDO GAP 90 en/Endometriose/Homepage_Neu/EVD_Broschuere_Basiswissen_Endometriose_ Webseite.pdf National Cancer Institute, U.S. Department of Health and Human Services, & National Institutes of Health. (2005). Theory at a Glance: A Guide for Health Promotion Practice (Vol. 2). Sarria-Santamera, A., Orazumbekova, B., Terzic, M., Issanov, A., Chaowen, C., & Asúnsolodel-Barco, A. (2020). Systematic Review and Meta-Analysis of Incidence and Prevalence of Endometriosis. Healthcare, 9(1), 29. https://doi.org/10.3390/healthcare9010029 Wróbel, M., Wielgoś, M., & Laudański, P. (2022). Diagnostic delay of endometriosis in adults and adolescence-current stage of knowledge. Advances in Medical Sciences, 67(1), 148–153. https://doi.org/10.1016/j.advms.2022.02.003

THE ENDO GAP The current state of knowledge of menstruating people about Endometriosis in Germany An exploratory mixed methods study

CONCLUSION Endometriosis is a common condition among menstruating individuals (10 % global prevalence, up to 50 % involuntarily childless) (Sarria-Santamera et al., 2020) Approximately 40,000 new cases in Germany annually, often under- and undiagnosed (Moritz et al., 2020) Severe pain symptoms are frequently misinterpreted, causing diagnostic delays of over ten years (Hudelist et al., 2012; Wróbel et al., 2022) Stigma, menstrual taboos, and pain normalisation hinder diagnosis (Hudelist et al., 2012) Need for research on public awareness of Endometriosis in Germany Research question: What is the current (perceived) state of knowledge among menstruating people in Germany regarding Endometriosis? Three key aspects are central to understanding Endometriosis knowledge and awareness: Influence of menstrual knowledge:1. Increased focus on menstrual health has led more young people to seek professional consultation a. Increased awareness towards gynecological diseases like Endometriosisb. Need for improving understanding through enhanced educational programsc. Influence of generational differences:2. Increased engagement and awareness among Gen Z populationa. Increased desire of knowledge regarding menstrual healthb. Increased risk of misunderstanding due to disease’s complexity (underestimation)c. Influence of digital media:3. Increased visibility and information availability through social media platformsa. Increased risk of content credibility due to lack of professional informationb. Increased involvement of medical professionals neededc. Multifaceted approach needed: Public campaigns and discussions addressing societal taboos Further research analysing: Most effective information sources within different demographics Perception and influence of healthcare providers Endometriosis awareness among Gen Z and younger Long-term impacts of Endometriosis knowledge and awareness

METHOD Study Design: Mixed methods research with a cross-sectional sample combined with semi-structured expert interviews Sample & Recruitment: Active and passive recruitment was carried out through the Snowball Method using Social Media platforms and medical centres. For the quantitative part a sample of N = 316 (average age of 30; SD = .779) was collected and four expert interviews were conducted. Instruments & Analyses: Participants of the quantitatve phase of the study filled out an online questionnaire based on the Health Belief Model (National Cancer Institute, 2005) to analyse their perceived and actual knowledge on Endometriosis. Descriptive statistics and ordinal logistic regression assessed current Endometriosis knowledge. The subsequent qualitative phase involved expert interviews, with analysis guided by Kuckartz and Rädicker's (2022) qualitative content analysis method.

Endometriosis, Menstruation, Gender Data Gap, Gender Health Gap, Gender-Awareness, Menstrual Knowledge, Health Behaviour Mieke van den Akker , Franziska von Mandelsloh , Prof. Dr Johanna Buchcik University of Applied Sciences (HAW) Hamburg, Faculty of Life Sciences, Department of Health Sciences University of Applied Sciences (HAW) Hamburg, Faculty of Business and Social Sciences, Department Nursing and Management 1 12 1 2