Endometriosis : Patients’ perspectives to improve care and trajectories of pain symptoms in the ComPaRe-Endometriosis cohort

Endometriosis is a chronic gynecological disease that affects approximately 10% of women in their childbearing age. Despite its high prevalence, our understanding of this disease is still limited, and affected women encounter many challenges throughout their care pathway. This thesis on the epidemiology of endometriosis relied on data from the ComPaRe-Endometriosis e-cohort, which was designed with a participatory research approach. The objective was to contribute to a better understanding of the evolution of endometriosis over time and of its management by combining rigorous methodology and patient experience. Two studies focused on evaluating the quality and reliability of cohort data. Another study gathered patients' perspectives on their management to identify areas for improvement from their point of view. Lastly, a study explored the profiles of evolution of pain symptoms over the life course. The results showed a high quality of the collected cohort data overall, particularly regarding endometriosis diagnosis and age at diagnosis. Moreover, a good level of reliability was observed for the questions assessing past pain symptoms. Participants of ComPaRe-Endometriosis submitted a total of 61 ideas to improve endometriosis management. Among those, they expressed the urgent need for better knowledge and recognition of this disease. The last study examining profiles of past endometriosis pain identified three to four distinct trajectories based on the specific pain studied, suggesting different types of progression of symptoms among endometriosis patients. Several factors were associated with the most severe trajectories, such as family history and age at menarche. In conclusion, these results highlight the quality of the cohort data and the participants' aspirations for improving endometriosis management. Additionally, this work identified several trajectories of past endometriosis pain over the life course along with factors related to more severe forms of progression. This work contributed to the methodological validation of key data in the cohort and provided initial results on the trajectories of evolution of endometriosis pain over time, which remain to be confirmed in a prospective study through the implemented longitudinal follow-up.