Ibero-American Endometriosis Patient Phenome: Demographics, Obstetric-Gynecologic Traits, and Symptomatology.
Idhaliz Flores-Caldera, Paola M Ramos-Echevarría, José A Oliveras-Torres, Natasha Santos-Piñero, Estefanía D Rivera-Mudafort, Denisse M Soto-Soto, Brian Hernández-Colón, Luis E Rivera-Hiraldo, Loraine Mas, Mary Rodríguez-Rabassa, Nabal J Bracero, Edgardo Rolla, Ibero-American Endometriosis Association
Author Information
Idhaliz Flores-Caldera: Department of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico.
Paola M Ramos-Echevarría: Department of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico.
José A Oliveras-Torres: Department of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico.
Natasha Santos-Piñero: Department of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico.
Estefanía D Rivera-Mudafort: Department of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico.
Denisse M Soto-Soto: Department of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico.
Brian Hernández-Colón: Department of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico.
Luis E Rivera-Hiraldo: San Lucas Episcopal Medical Center, Ponce, Puerto Rico.
Loraine Mas: Department of Basic Sciences, Ponce Health Sciences University, Ponce, Puerto Rico.
Mary Rodríguez-Rabassa: School of Behavioral and Brain Sciences, Ponce Health Sciences University, Ponce, Puerto Rico.
Nabal J Bracero: Department of Ob-Gyn, University of Puerto Rico, San J uan, Puerto Rico.
Edgardo Rolla: Sociedad Argentina de Endometriosis, Buenos Aires, Argentina.
An international collaborative study was conducted to determine the demographic and clinical profiles 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). This is a cross-sectional study to collect self-reported data on demographics, lifestyle, and endometriosis symptoms of Hispanic/Latinx endometriosis patients from April 2019 to February 2020. The EPHect Minimal Clinical Questionnaire (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 Latin American countries and Spain. Descriptive statistics (frequency, means and SD, percentages, and proportions) and correlations were conducted using SPSSv26. 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. The most common symptoms were back/leg pain (85.4%) and fatigue (80.7%). The mean number of children was 1.5; 34.4% had miscarriages; the 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%), polycystic ovary syndrome (PCOS) (22.2%), and irritable bowel syndrome (21.1%). Most participants (97.0%) experienced pelvic pain during menses; for 78.7%, pain was severe; 86.4% reported dyspareunia. The mean age of dysmenorrhea onset was 16.2 years (SD ± 6.1). Hormone treatments were underutilized, while impact was substantial. Pain catastrophizing scores were significantly correlated with pain intensity ( < 0.001). 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 the first step to facilitate the 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.
