AUTHOR=Flores-Caldera Idhaliz , Ramos-Echevarría Paola M. , Oliveras-Torres José A. , Santos-Piñero Natasha , Rivera-Mudafort Estefanía D. , Soto-Soto Denisse M. , Hernández-Colón Brian , Rivera-Hiraldo Luis E. , Mas Loraine , Rodríguez-Rabassa Mary , Bracero Nabal J. , Rolla Edgardo ,  Ibero-American Endometriosis Association 

TITLE=Ibero-American Endometriosis Patient Phenome: Demographics, Obstetric-Gynecologic Traits, and Symptomatology

JOURNAL=Frontiers in Reproductive Health

VOLUME=Volume 3 - 2021

YEAR=2021

URL=https://www.frontiersin.org/journals/reproductive-health/articles/10.3389/frph.2021.667345

DOI=10.3389/frph.2021.667345

ISSN=2673-3153

ABSTRACT=Background: An international collaborative study was conducted to determine the demographic and clinical profile of Hispanic/Latinx endometriosis patients from Latin America and Spain using the Minimal Clinical Questionnaire developed by the World Endometriosis Research Foundation (WERF) Endometriosis Phenome and Biobanking Harmonization Project (EPHect). 
Methods: A cross-sectional study collected self-reported data on demographics, lifestyle, and endometriosis symptoms of Hispanic/Latinx endometriosis patients from April 2019 to February 2020. The EPHect Endometriosis Patient Questionnaire-minimum (EPQ-M) was translated into Spanish. Comprehension and length of the translated survey were assessed by Spanish-speaking women. An electronic link was distributed via social media of endometriosis patient associations from 11 countries. Descriptive statistics (frequency, means-SD, percentages, proportions) and correlations were conducted using SPSSv26.
Results: The questionnaire was completed by 1,378 participants from 23 countries; 94.6% had self-reported diagnosis of endometriosis. Diagnostic delay was 6.6 years. Most participants had higher education, private health insurance, and were employed. Most common symptoms were back/leg pain (85.4%) and fatigue (80.7%). Mean number of children was 1.5; 34.4% had miscarriages; mean length of infertility was 3.7 years; 47.2% reported pregnancy complications. The most common hormone treatment was oral contraceptives (47.0%). The most common comorbidities were migraines (24.1%), PCOS (22.2%), and irritable bowel syndrome (21.1%). Most participants (97.0%) experienced painful pelvic pain during menses; for 78.7% pain was severe; 86.4% reported dyspareunia. Mean age of dysmenorrhea onset was 16.2 (SD±6.1) years. Hormone treatments were underutilized, while impact was substantial. Pain catastrophizing scores were significantly correlated with pain intensity (p<0.001).
Conclusion: This is the first comprehensive effort to generate a clinical-demographic profile of Hispanic/Latinx endometriosis patients. Differences in clinical presentation compared to other cohorts included higher prevalence and severity of dysmenorrhea and dyspareunia and high levels of pain catastrophizing. Though future studies are needed to dissect the impact of race and ethnicity on pain and impact, this profile is a first step to facilitate recognition of risk factors and diagnostic features and promote improved clinical management of this patient population. The EPHect questionnaire is an efficient tool to capture data to allow comparisons across ethnicities and geographic regions and tackle disparities in endometriosis research.