Clinical and Demographic Profile of Women With Endometriosis From Iberoamerica [12B]

INTRODUCTION: This study was conducted to determine for the first time the demographic and clinical profile of women with endometriosis of Hispanic/Latina background, a patient population not well represented in databases and cohort studies. In order to gather standardized, comparable data we used the Clinical Questionnaire developed by the Endometriosis Phenome project (EPhect) of the World Endometriosis Research Foundation (WERF). METHODS: A cross-sectional anonymous study was conducted using the Spanish translation of the questionnaire. A REDCap-based link was distributed via social media to women with endometriosis in collaboration with Patient Associations. Data was analyzed using SPSS. RESULTS: Women (1,296) from 22 countries of South America, Central America, the Caribbean, Spain and US participated. Patients reported on education (43.5% had a degree), race (49.8% were white), and work (78.5%). Mean age was 33.7 years old (y/o; range 15–66); at menarche was 12 y/o; at pain onset was 16.2 y/o. Many reported having regular menstrual cycles (70.4%), and profuse menstrual bleeding (47.9%). Most (78.9%) patients reported severe pelvic pain (mean VAS 7.7). Most (82.9%) reported dyspareunia (mean VAS 6.3). Mean number of children was 1.52; 40.3% reported infertility/abortion; only 27.6% sought infertility treatment. The mean length of infertility was 0.52 years (range 0.08–8 years). Quality of life was negatively impacted in household chores (64.8%), sleep (58.7%), and exercise/sports (56.4%). CONCLUSION: Hispanic/Latina women with endometriosis present with severe symptoms and substantial quality of life impact. The EPhect questionnaire is a valuable tool to capture data and allow comparisons across ethnicities and geographic regions.