Haemophilia care in Europe: a survey of 19 countries

Abstract

In 2009, a questionnaire was circulated to 19 national haemophilia patient organizations in Europe affiliated to the European Haemophilia Consortium (EHC) and the World Federation of Hemophilia (WFH) to seek information about the organization of haemophilia care and treatment available at a national level. The responses received highlighted differences in the level of care despite the recent promulgation of consensus guidelines designed to standardize the care of haemophilia throughout the continent of Europe. There was a wide range in factor VIII consumption with usage ranging from 0.38 IU per capita in Romania to 8.7 IU per capita in Sweden (median: 3.6 IU per capita). Despite the specific inclusion of coagulation factor concentrate in the WHO list of essential medications, cryoprecipitate is still used in some eastern European countries.

Haemophilia care in Europe ‐ A survey of 37 countries

“…In Portugal FVIII use per capita went down by 1% between 2011 and 2014. The same question was asked in the EHC's 2008 survey and 14 countries submitted these data in all three surveys. The responses (Figure ) show that while six countries either slightly reduced or maintained their FVIII IU per capita between 2008 and 2011, eight countries increased it in that timeframe and all countries increased their FVIII per capita consumption between 2008 and 2014.…”

“…Since their launch, and every 3 years since, the EHC has conducted surveys amongst its national haemophilia patient organization members to determine the extent to which these haemophilia principles are met in European countries. A total of 19 countries responded to the 2009 survey . In 2010 and again in 2013, the European Directorate for the Quality of Medicines and Healthcare (EDQM), part of the Council of Europe, published reports on the optimal use of blood and blood products, which also contained specific recommendations for haemophilia.…”

Influence of medical insurance schemes and charity assistance projects on regular prophylaxis treatment of the boys with severe haemophilia A in China

“…2,3 Prophylaxis treatment with regular FVIII infusion prevents bleeding and their associated complications, and is considered the standard of care by the World Federation of Haemophilia (WFH). 4,5 Prophylaxis is beneficial when started at any age/stage of disease, but the most benefit will come from primary prophylaxis to start with no more than one large joint bleed with no joint damage and before age 3. 6 The primary standard-dose prophylaxis has been shown to maintain normal joint structure for 93% patients in the Joint Outcome Study.…”

Comprehensive Care and Delivery of Care: The Developed World

“…The level of service provision within different countries in Europe compared to the recommendations set out in the principles of care has recently been audited by two studies; one by physicians and the other patients' organizations [8,9]. It is a wellorganized and effective pressure group which encourages the services, and the first recommendation states that this can best be accomplished by having a national committee to include all stakeholders to oversee and plan national services.…”