Barriers to a Timely Diagnosis of Endometriosis: A Qualitative Systematic Review

OBJECTIVE: The diagnosis of endometriosis, a common gynecologic condition, is characterized by delays of up to 11 years. During this time, women may experience persistent symptoms that affect their quality of life, productivity, and relationships, and the disease may progress. It is therefore a priority to understand the factors that contribute to this delay to help improve the diagnostic pathway. Our objective was to describe the diagnosis barriers of endometriosis from the patient and health care professional perspectives using a qualitative evidence synthesis.

DATA SOURCES: We searched MEDLINE, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature using combinations of the synonyms of endometriosis, diagnosis, and qualitative research. The search was restricted to English-language articles from database creation until May 2022.

METHODS OF STUDY SELECTION: The initial search yielded 899 articles. Studies were included if they explored the experiences or views of affected women or health care professionals on the diagnosis of endometriosis and used qualitative methods for data collection and data analysis. Risk of bias was assessed with the Critical Appraisal Skills Programme checklist.

TABULATION, INTEGRATION, AND RESULTS: Thirty-seven articles were considered for full review, with 13 eligible articles identified for inclusion. Thematic synthesis was used to identify four key themes: 1) individual factors (n=6), 2) interpersonal influences (n=6), 3) health system factors (n=13), and 4) factors specific to endometriosis (n=13). These encompassed 12 subthemes that represented barriers to the diagnosis of endometriosis: 1) difficulty establishing pathologic symptoms from normal menstruation and the use of self-care techniques; 2) menstrual stigma and the normalization of menstrual pain; 3) attitudes and lack of training for health care professionals, delayed referrals to specialist services, and poor explanation of oral contraceptive pill use in the diagnostic process; and 4) variability in presenting symptoms, overlap with other conditions, lack of a noninvasive method of diagnosis, and concerns about the value of a diagnosis.

CONCLUSION: This review identified barriers to the timely diagnosis of endometriosis from the perspective of affected individuals and health care professionals. It highlights areas for improvement along the diagnostic pathway, which may guide future strategies to reduce delays.