The European Principles of Haemophilia Care: a pilot investigation of adherence to the principles in Europe

Summary In 2008 the 10 Principles of Haemophilia Care were outlined to provide a benchmark for haemophilia treatment. The EHTSB performed a survey to establish to what extent the Principles of Haemophilia Care were being applied throughout E urope. In total, 21 centres from 14 countries ( F rance, UK , G ermany, S witzerland, S weden, N orway, the N etherlands, B elgium, P oland, P ortugal, S lovakia, S pain, G reece and I taly), were surveyed. A central organization of haemophilia care (principle 1) was present in 79%, and a central patient registry in 57% (principle 2). National haemophilia care decision‐making was performed by clinicians, ministries and patient organizations (principle 4). All had designated comprehensive care centres ( CCC – principle 3), responsible the majority of severe patients, but in 36% some patients were treated outside CCC /haemophilia treatment centres ( HTC )s. Clotting factor concentrates were available everywhere, without dosing restraints (principle 5), including recombinant products in 86% of countries. Prophylactic treatment was available for all children but not for all adults (principle 7). Immune tolerance was available in all countries (principle 9). Home treatment was supported and taught by all centres (principle 6). At centre level, 86% had 24‐h laboratory facilities and all participated in education and research (principle 10). An experienced haematologist was available at all centres, a paediatrician in 47%, and prompt out of hours review was available in all (principle 8). The Principles of Haemophilia Care were generally applied throughout Europe. Some aspects of centralization, national organization of care, use of registries, formal paediatric care and prophylaxis for adults may be improved.