Barriers and Facilitators Affecting the Care of Patients with Endometriosis: A Scoping Review

Endometriosis affects around 10-15% of women of reproductive age worldwide. Despite its prevalence and the considerable pain and psychological stress associated with the disease, the care of those affected is associated with numerous challenges. A central problem is the often delayed diagnosis, which takes 6-10 years on average. However, early diagnosis is essential for appropriately targeted therapeutic approaches. The specific barriers that contribute to delayed diagnosis and inadequate care have not yet been comprehensively identified. The aim of this scoping review was therefore to systematically identify existing barriers and facilitators to derive approaches for improving diagnosis and doctor-patient communication in Germany.

A systematic search of international studies was conducted in accordance with the PRISMA-ScR guidelines to identify relevant German- and English-language publications in the period from 2014 to 2024. The search was conducted in various scientific databases. Empirical studies on barriers and facilitators in endometriosis care were included. After screening and selection, 39 relevant publications remained, based on which eight main categories were inductively derived.

Primary barriers include delays in diagnosis, stigmatization of menstrual pain, emotional distress such as shame and fear, inadequate pain management, and structural barriers. The findings suggest that effective interdisciplinary collaboration and patient-centered communication between doctors and patients are essential to reduce diagnostic delays and optimize care. Furthermore, individual studies suggest that digital technologies have the potential to encourage patients to document and communicate their symptoms.

The results of the study suggest that the stigmatization of endometriosis significantly complicates its care in the health care system. Consequently, interdisciplinary care models, targeted training of medical professionals, and measures to strengthen doctor-patient communication are key approaches for patient-centered and early care.