Haemophilia care in Europe - a survey of 35 countries

Summary A questionnaire was circulated in 2012 to 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 nati...

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Bibliographic Details
Published in:Haemophilia : the official journal of the World Federation of Hemophilia 2013-07, Vol.19 (4), p.e239-e247
Main Authors: O'Mahony, B., Noone, D., Giangrande, P. L. F., Prihodova, L.
Format: Article
Language:English
Subjects:
Decision Making
Europe - epidemiology
Gross Domestic Product
Health Care Surveys
Health Services Accessibility - statistics & numerical data
Hemophilia A - epidemiology
Hemophilia A - immunology
Hemophilia A - prevention & control
Hemophilia A - therapy
Home Care Services - statistics & numerical data
Humans
Immune Tolerance - immunology
Organisation
Patient Care - statistics & numerical data
Registries - statistics & numerical data
Specialist Care
Specialization - statistics & numerical data
Surveys and Questionnaires
Treatment
von Willebrand Diseases - therapy
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Summary:Summary A questionnaire was circulated in 2012 to 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 35 responses received highlighted major differences in the availability of treatment and care. There was a wide range in factor VIII consumption with usage ranging from 0.20 IU per capita in Armenia to 8.56 IU per capita in Sweden (median: IU per capita). The decrease in health budgets in many countries was not matched by decreases in use of FVIII per capita. In the 19 countries that responded to the previous survey, there was a significant improvement in access to prophylaxis and home treatment.
ISSN:1351-8216
1365-2516
DOI:10.1111/hae.12125