Patients' Perspectives on How to Improve Endometriosis Care: A Large Qualitative Study Within the ComPaRe-Endometriosis e-Cohort

Abstract

Background: Endometriosis is a chronic gynecological condition that affects about 10% of women of reproductive age. Despite its prevalence, diagnosis is often delayed, misdiagnosis is common, and treatment options are poor. This study aimed at capturing ideas to improve endometriosis care from the patients' perspectives. Materials and Methods: We analyzed cross-sectional data from 1,000 adult patients in ComPaRe-Endometriosis (a French prospective e-cohort focused on endometriosis) who answered to the open-ended question: "If you had a magic wand, what would you change about your health care?". The free-text responses were analyzed by qualitative thematic analysis using an inductive approach. Results: Patients had a mean age of 34.1 years (standard deviation = 8.1); 56% and 42% had stage IV disease or deep endometriosis, respectively. They elicited 2,487 ideas to improve the management of endometriosis, which were categorized into 61 areas of improvement, further grouped into 14 themes. The top five areas of improvement were mentioned by >10% of the patients and were to (1) train caregivers to develop their knowledge on the disease, (2) provide better management of daily pain and pain attacks, (3) take patient-reported symptoms seriously, (4) standardize diagnostic processes to improve early detection, and (5) have caregivers listen more to the patients. Conclusions: We identified 61 areas for improvement in endometriosis care. These results reflect patients' expectations in terms of management of their disease and will be useful to design a better global care for endometriosis from the patients' perspectives.

Keywords: endometriosis; improving care; patient involvement; qualitative research.