Comparative analysis of the organization of endometriosis care in five high-income countries: implications for health systems and policy

STUDY QUESTION How is endometriosis care organized at the primary, secondary, and tertiary care levels in five high-income countries? SUMMARY ANSWER In all countries under study, initiatives have been taken to provide endometriosis care by experienced health care professionals in a multidisciplinary setting, but certification criteria for secondary and tertiary centres vary greatly across countries. WHAT IS KNOWN ALREADY Endometriosis is a highly prevalent and complex disease with potentially significant physical, sexual, psychological, social, and economic impacts on those affected. Logically, a multidisciplinary approach by health care providers with expertise and experience has been recommended. STUDY DESIGN, SIZE, DURATION This study included five high-income countries where endometriosis care was centralized to some extent or where a national action plan for endometriosis was developed. PARTICIPANTS/MATERIALS, SETTING, METHODS Based on a review of the literature, five countries were selected: Australia, Denmark, Germany, the Netherlands, and the UK. Information was collected through a review of peer-reviewed and grey literature that was revised and amended by experts from each country. MAIN RESULTS AND THE ROLE OF CHANCE In 2018, Australia launched a comprehensive government-led national action plan for endometriosis. In Germany, secondary and tertiary endometriosis care is organized at three levels, while in Denmark and the Netherlands, a two-level system has been installed, whereas in the UK, only tertiary referral centres have been initiated to date. Only in Denmark must secondary care centres refer patients with advanced endometriosis to tertiary care centres. In all countries studied, treatment for advanced endometriosis is also carried out in centres without certification, where the quality of care is not assessed. National endometriosis registries have commenced and are active in Australia and the UK. In the selected countries, various initiatives have been taken to enhance the training of health care professionals, to inform patients, and to increase awareness on endometriosis. In none of the studied countries is endometriosis (automatically) recognized and/or registered as a chronic condition. LIMITATIONS, REASONS FOR CAUTION In the five countries evaluated, there are continuing efforts to further improve the organization of endometriosis care. With ongoing revisions of service provision, resourcing and health care structures for endometriosis are evolving considerably; therefore, this overview should be considered as a snapshot taken up to early 2025. Since this overview relies principally on scientific literature, policy documents, and expert opinions, and not on objective outcomes, there may be dyssynchrony between what is summarized here and actual clinical practice. WIDER IMPLICATIONS OF THE FINDINGS This overview may provide advice and guidance for policy makers in the development of a framework for the organization of endometriosis care in their country. STUDY FUNDING/COMPETING INTEREST(S) The research was supported by the government-approved work program of the Belgian Health Care Knowledge Centre (KCE). C.N. is funded though the NECST Network grant (4-I66SNMA) from the Australian Government Department of Health and Aged Care, manages research grant funding from the MRFF, is Chair of the Australian Clinical Trials Alliance (ACTA) Special Interest Group for Network Managers (SIGNet) and was a previous employee with CSL Vifor (formerly Vifor Pharma Pty. Ltd). J.A. is on advisory boards and received consulting fees from Gedeon Richter, BD and Hologic, received honoraria for lectures from MSD and Hologic, and received support for attending meetings from Hologic. He is on the Endometriosis Advisory Group for the Australian Government, Chaired the first Australian Guidelines for Endometriosis Diagnosis and Management, and contributed to the Governments National Action Plan on Endometriosis. He is the Chair of the NECST Network, past-President of AGES, and past-Chair and Medical Director of Endometriosis Australia and holds multiple competitive grants in endometriosis research through Australian Government funding agencies (Commonwealth Department of Health and Aged Care, MRFF), AGES, Country Women’s Association of NSW, MSD and Endometriosis Australia. R.L., N.B., C.C., F.D., M.D.J., D.H., A.K., A.N., S.O., and K.-W.S. have no conflicts of interest to declare. TRIAL REGISTRATION NUMBER N/A.