P–327 Patients’ perspectives on how to improve the management of endometriosis in France: The ComPaRe-Endometriosis cohort

Abstract

Abstract Study question How should endometriosis management be improved from the patient’s point of view? Summary answer One thousand endometriosis patients proposed 2,587 ideas to improve the management of endometriosis that reflect three main themes: diagnosis, care, and information on the disease. What is known already Endometriosis is a gynecologic condition affecting 10% of reproductive-age women. The disease causes severe pelvic pain and has a dramatic impact on women’s quality of life. A mean delay of 7 years was described between onset of symptoms and diagnosis. There is an urgent need to reduce this delay and to rethink endometriosis care in order to adopt a more comprehensive and patient-centered approach, as women are often dissatisfied with the care they receive. Study design, size, duration This study was carried out in a random sample of endometriosis patients participating in ComPaRe (Community of Patients for Research), a prospective e-cohort of adult chronic disease patients who will be followed-up for 10 years. Participants complete monthly online questionnaires about their life with their disease(s). Recruitment began in January 2017 and is still ongoing, with currently 44,000 participants, including 10,000 endometriosis patients in the ComPaRe-Endometriosis sub-cohort. Participants/materials, setting, methods We selected a random sample of 1,000 participants in ComPaRe-Endometriosis, forming 3 equal groups of age (<25, 25–45, >45 years old) and education (<12, 12–14, >14 years). We conducted a qualitative study to gather their ideas for improving the management of their disease. Participants were asked: “If you had a magic wand, what would you change in your health care?”. One interviewer and two patients independently extracted ideas from the open-ended responses using thematic analysis. Main results and the role of chance Patients proposed a total of 2,587 ideas to improve the management of endometriosis, which we classified in three main themes: diagnosis, care, and information on the disease. To improve diagnosis, women proposed 724 ideas classified into 11 areas of improvement, including training of health professionals, taking symptoms seriously, improving the diagnosis process, and recognition of the disease by clinicians. To improve care, patients gave 1,677 ideas classified into 71 areas of improvement. For example, they asked for a better pain management, more listening from caregivers, the reimbursement of care or medical treatments, help in accessing clinicians that are expert in endometriosis, and reduced waiting times for medical appointments and exams. Finally, to improve information on the disease, participants suggested 186 ideas classified into 5 areas of improvement, covering more explanation about the disease, public recognition of endometriosis and general awareness, and more research and more explanation of research results. Limitations, reasons for caution The results were reviewed by three people in order to reduce the margin of interpretation in the analysis of this open-ended question, but some subjectivity remains. Generalizability may be difficult because the results are linked to the specificities of the French model of care. Wider implications of the findings: Through the many ideas proposed by patients, we identified a total of 87 areas for improvement in endometriosis diagnosis, care, and information. 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’ perspective. Trial registration number Not applicable