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

Abstract

Background: 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).Methods: 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.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. 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 (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 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.

Danish translation, cross-cultural adaptation, and electronic migration of the World Endometriosis Research Foundation Endometriosis Phenome and Biobanking Harmonisation Project Endometriosis Patient Questionnaire

“…A plausible explanation could be differences in the study design as one study tested a shorter version (EPQ-M) which expectantly led to a faster time-to-complete [36 ± 10.8 min ( 20 )], and another study tested the questionnaire without supervision [30–60 min ( 19 )]. Assuming answering under supervision encourages the participants to keep focus and not to cut corners, we would expect our design and method to result in an increased time-to-complete, as observed ( 22 ).…”

“…All studies that published comments evaluating the questionnaire reported it being long and/or repetitive ( 19 , 20 , 22 ). Despite these comments, we recommend that investigators use the full questionnaire to ensure the possibility of future collaborations with other research institutions.…”

Endometriosis in the era of precision medicine and impact on sexual and reproductive health across the lifespan and in diverse populations

“…Furthermore, across many different types of pain experienced by patients, Black and Brown patients are often undertreated and underdiagnosed in comparison with non‐Hispanic white patients 195,197 . Hispanic patients who have endometriosis have identified that their dysmenorrhea and high pain are particularly severe, and negatively impact their quality of life 198 . Therefore, these implicit biases that providers impart to their patients and junior‐level trainees have detrimental impacts on patient care.…”

“…195,197 Hispanic patients who have endometriosis have identified that their dysmenorrhea and high pain are particularly severe, and negatively impact their quality of life. 198 Therefore, these implicit biases that providers impart to their patients and junior-level trainees have detrimental impacts on patient care. Thus, it is particularly important to understand how to address implicit biases in health care as we attempt to understand how to better attend to the needs of marginalized communities affected by endometriosis.…”

Endometriosis – a painful disease

“…Current research cohorts do not well reflect the clinical population in which they are hoping to have impact. We are aware of new cohorts being set up in under-researched regions [48][49][50][51][52][53], but it is increasingly clear that there are systemic disparities in access to care throughout the developed world [54]. Thus, continuing to focus our research efforts only on those with a surgical diagnosis will perpetuate these biases.…”