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

D Noone,B O’Mahony,M Makris,F Peyvandi,A Bok

doi:10.1186/s13023-020-01456-y

Abstract

IntroductionThe 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.MethodsIn 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.ResultsThe 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.ConclusionMonitoring 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.

Highlights

The European principles of care in haemophilia marked their first decade in 2018
In 2008, an interdisciplinary group of European clinicians with patient organisation input published 10 principles of haemophilia care that highlighted the importance of access to a multidisciplinary team of specialists in comprehensive care centres (CCC’s) and haemophilia treatment centres (HTCs), a supply of safe clotting factor concentrates for use in home treatment and prophylaxis programmes, and a national patient register collecting treatment statistics [1]
This paper examines the implementation of the above principles and recommendations over 10 years, aims to identify remaining gaps and proposes future directions

Summary

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. This paper examines the implementation of the above principles and recommendations over 10 years, aims to identify remaining gaps and proposes future directions

Objectives

Methods

Results

Discussion

Conclusion