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.

Keywords: dysmenorrhea; dyspareunia; endometriosis; epidemiology; ethnicity; hispanic/latinx; phenome; symptoms.

Figure 1

Validation of the Spanish EPhect clinical minimal questionnaire. (A) Quantitative assessment of feasibility. (B) Specific comments made by questionnaire evaluators.

Figure 2

Countries of birth of study participants. Responses were received from 23 countries in South and Central America, the Caribbean, Spain, and the USA.

Figure 3

Lifestyle factors reported by participants. (A) Physical activity. (B) Alcohol consumption.

Figure 4

Obstetric characteristics of the study participants. (A) Conception methods. (B) Pregnancy complications.

Figure 5

The most common symptoms reported by participants organized by system.

Figure 6

Diagnosis and intensity of pelvic pain. (A) Pelvic pain diagnosis. (B) Intensity level of pelvic pain (last 3 months). (C) Intensity of level of dysmenorrhea. (D) Intensity level of dyspareunia.

Figure 7

Pain characteristics and impact of pelvic pain on lifestyle. (A) Pain characteristics by the McGill Pain Questionnaire Short Form results. (B) The impact of pelvic pain during the last 3 months.

Figure 8

Pain medications and hormonal therapies. (A) Medications used for pelvic pain. (B) Medications used for other types of pain. (C) Hormonal therapies ever used by participants. (D) Hormonal therapies during last 3 months.