Evolution of Haemophilia Care in Europe: 10 years of the principles of care

Abstract

Introduction: The European principles of care in haemophilia marked their first decade in 2018. These guiding principles were the beginning of the European Haemophilia Consortium (EHC) review of countries' adherence to these principles in 2009, 2012, 2015 and 2018. The aim of this paper was to examine the implementation of the principles and how they have impacted the evolution of care in the last decade, as well as to identify remaining gaps and proposes future directions. Methods: In 2018, the EHC distributed a survey to EHC national member organisations in English and Russian and encouraged them to discuss responses with local clinicians for accuracy. Data was also cross-referenced and validated for countries in earlier surveys using additional available resources. Results: The 10-year-old European principles had a significant impact on the development of care for haemophilia and related bleeding disorders in Europe. They set objectives around which multi-stakeholder groups have established recommendations and specific steps for the progressive improvement of care for bleeding disorders. However, some have been promoted and implemented more than others. Conclusion: Monitoring adherence to, and impact of, the European Principles of Care significantly assists in tracking developments and highlighting gaps. Countries' inability to report consistent and coherent data remains a challenge and hinders both provision of treatment and care for patients as well as optimal national and European healthcare systems.

A Cross-National Survey of People Living with Hemophilia: Impact on Daily Living and Patient Education in Central Europe

“… 1 , 2 Yet, despite implementation since 2008 of the European Principles of Hemophilia Care (EPHC), 1 management practices, treatment access and patient education still vary in different European regions. 3 The 2020 European Hemophilia Consortium (EHC) survey revealed that Western Europe has benefitted more from improvements made due to EPHC implementation compared to Eastern Europe. 3 Access to different types of hemophilia care, including at-home treatments and prophylaxis, was also higher among Western European countries compared with Eastern European countries.…”

“… 3 The 2020 European Hemophilia Consortium (EHC) survey revealed that Western Europe has benefitted more from improvements made due to EPHC implementation compared to Eastern Europe. 3 Access to different types of hemophilia care, including at-home treatments and prophylaxis, was also higher among Western European countries compared with Eastern European countries. 3 Notably, the European Hemophilia Network (EUHANET) reported that countries with the lowest number of Hemophilia Treatment Centers (HTCs) tend to be in Eastern Europe.…”

“… 3 Access to different types of hemophilia care, including at-home treatments and prophylaxis, was also higher among Western European countries compared with Eastern European countries. 3 Notably, the European Hemophilia Network (EUHANET) reported that countries with the lowest number of Hemophilia Treatment Centers (HTCs) tend to be in Eastern Europe. 4 To ensure continuing improvements in hemophilia care across Central and Eastern Europe, it is important to recognize how variations in access to treatment and information about the condition can impact everyday life for PwH and their caregivers (CPwH).…”

Haemophilia care in Europe: Past progress and future promise

“…Data collected by EHC from 2009 to 2016 demonstrated a trend of increased access to CFCs in many Western and central European countries 30‐32 . During that time, access to treatment increased significantly, sometimes linked to increased home treatment, prophylaxis for adults, and availability of immune tolerance therapy.…”

Evolution of haemophilia integrated care in the era of gene therapy: Treatment centre’s readiness in United States and EU

“…Comprehensive, integrated care provided by a multi-disciplinary team of experts improves outcomes and is widely recommended for people with haemophilia (PWH). [1][2][3][4][5][6] Although care models vary, the principles of management are consistent between countries.…”