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Haemophilia (2010), 1–6
DOI: 10.1111/j.1365-2516.2010.02362.x
ORIGINAL ARTICLE
Haemophilia care in Europe: a survey of 19 countries
B. O’MAHONY,* D. NOONE,* P. L. F. GIANGRANDE and L. PRIHODOVAà
*Irish Haemophilia Society, Cathedral Court, Dublin, Ireland; Oxford Comprehensive Haemophilia Centre, Oxford, UK; and àGraduate School, Kosice Institute for Society and Health, Medical Faculty, PJ Safarik University, Kosice, Slovak Republic
Summary. 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
Introduction
A document outlining the European principles of haemophilia care, drafted by an inter-disciplinary group of haemophilia physicians with input from key patient opinion leaders and clinical nurse specialists, was published in 2008 [1]. This document was subsequently endorsed by both the European Haemophilia Consortium (EHC) and the World Federation of
Hemophilia (WFH) and was the subject of an official launch at the European Parliament in Brussels in
January 2009.
The 10 basic requirements outlined in Colvin et al.
[1] are:
1. Establishment of a central haemophilia organization in each country with supporting local group.
2. National Haemophilia patient registries.
3. A network of multidisciplinary comprehensive care centres and complementary haemophilia treatment centres. 4. Partnership of health care professionals and patients in the delivery of haemophilia care.
5. Safe and effective concentrates at optimum treatment levels.
6. Home treatment and delivery.
Correspondence: Brian O’Mahony, Irish Haemophilia
DOI: 10.1111/j.1365-2516.2010.02362.x
ORIGINAL ARTICLE
Haemophilia care in Europe: a survey of 19 countries
B. O’MAHONY,* D. NOONE,* P. L. F. GIANGRANDE and L. PRIHODOVAà
*Irish Haemophilia Society, Cathedral Court, Dublin, Ireland; Oxford Comprehensive Haemophilia Centre, Oxford, UK; and àGraduate School, Kosice Institute for Society and Health, Medical Faculty, PJ Safarik University, Kosice, Slovak Republic
Summary. 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
Introduction
A document outlining the European principles of haemophilia care, drafted by an inter-disciplinary group of haemophilia physicians with input from key patient opinion leaders and clinical nurse specialists, was published in 2008 [1]. This document was subsequently endorsed by both the European Haemophilia Consortium (EHC) and the World Federation of
Hemophilia (WFH) and was the subject of an official launch at the European Parliament in Brussels in
January 2009.
The 10 basic requirements outlined in Colvin et al.
[1] are:
1. Establishment of a central haemophilia organization in each country with supporting local group.
2. National Haemophilia patient registries.
3. A network of multidisciplinary comprehensive care centres and complementary haemophilia treatment centres. 4. Partnership of health care professionals and patients in the delivery of haemophilia care.
5. Safe and effective concentrates at optimum treatment levels.
6. Home treatment and delivery.
Correspondence: Brian O’Mahony, Irish Haemophilia