A U.S. Study of Endometriosis: Case-finding, Incidence, and Patterns of Care in a Population-based Cohort

Susan D Reed, MD, MPH, Principal Investigator

Endometriosis is an often disabling gynecologic condition most commonly diagnosed in women in their late 20s. The condition is diagnosed at surgery with the finding of endometrial gland tissue in the pelvis, bowel, abdomen, lungs or brain. In contradistinction, the normal anatomic location of endometrial tissue is within the uterus. Symptoms include painful periods, pain with sexual activity, diminished fertility, back ache and chronic pelvic pain. Rarely, endometriosis can also affect bowel and respiratory function, causing women to cough blood or have seizures at the time of menses. Athough benign, endometriosis is associated with considerable morbidity. Despite the public health burden, associated care costs, and impacts on the lives of many women, endometriosis treatment options remain limited. The goal of this study is to clarify/augment information from prior studies, in a US population-based cohort, on the incidence and prevalence of endometriosis in symptomatic women, with particular emphasis on accurate, economical use of data-only approaches, including generalizable automated case-finding algorithm(s). We propose to identify and characterize a population-based study cohort of Group Health Cooperative enrollees; women aged 18-65 with diagnoses of acute symptomatic endometriosis (2008-2014). Our primary specific aims are to: 1) develop and validate an automated case-finding algorithm for incident endometriosis; 2) estimate the incidence and prevalence of endometriosis and population-based trends from 2008-2013; 3) assess 2-year post- endometriosis diagnosis treatment and utilization patterns, including surgical interventions, pharmacotherapy, and overall health care utilization. Findings from this study will provide data on large samples with great economy and provide clinicians and patients with information, currently lacking, on patterns of endometriosis diagnosis, treatment and care. Our research findings will guide the development of new medical therapies for the millions of women with symptomatic endometriosis.

Funding Source: Group Health Research Institute / Bayer
End Date: 6-01-2018