Evaluation of Access to Care for Women Carriers of Haemophilia in Haemophilia Treatment Centres: A Multinational Experience

Introduction: Haemophilia has historically been recognised as a disease occurring in males due to X-linked inheritance. Some haemophilia carriers (HC) with factor eight or nine levels within normal range > 40 IU/dL may not have bleeding manifestation and may never require treatment, however more than 30% of haemophilia carriers experience bleeding symptoms, including those with factor levels above 50 IU/dL. World Federation of Hemophilia (WFH) guidelines for the management of haemophilia, third edition, recommend that HC, irrespective of factor levels, should be registered with a haemophilia treatment centre (HTC) and those with reduced factor levels should be managed as their male counterparts with haemophilia. Methods: To identify the provision of access to care for HC amongst global HTCs, nurses from nine countries, across six continents, collected data in line with the WFH guidelines for the management of haemophilia and reflected on challenges to meeting these recommendations around the world. Results: In 66% of HTCs, HC with normal and reduced coagulation factor levels are registered as patients within their HTCs. Differences in access to information, investigations, monitoring and treatment were observed between the participating HTCs. While this evaluation aimed to reflect global practice, the participating haemophilia treatment centres predominantly represent high-income healthcare systems. Conclusions: HC access to care remains inconsistent globally. Many of these gaps relate to different healthcare systems and resource limitations. Despite the majority of centres being large, from high income countries, the lack of demonstrable care around their management, highlights a gap in service provision for this underserved group.