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Topics: European Union, Europe, Health care Pages: 14 (1583 words) Published: October 15, 2013
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 Society, Cathedral Court, New Street, Dublin 8, Ireland.
Tel.: +353 1 657 9900; fax: +353 1 657 9901;
e-mail: brian@haemophilia.ie
Accepted after revision 2 June 2010
Ó 2010 Blackwell Publishing Ltd

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.
Keywords: organisation, treatment, specialist care

7. Prophylaxis.
8. Specialist services and emergency care.
9. Management of inhibitors.
10. Encouragement of education and research.
A survey was planned to determine the extent to
which these requirements of haemophilia care already
applied in the various countries within Europe. The
results could then serve as a baseline to monitor
progress in subsequent years.
The continent of Europe is a disparate one with a
wide range of GDP [2] and health systems in individual
countries. There are currently 27 member states of the
European Union (EU), which now include 10 countries
of the former communist eastern bloc. The coming
decades are likely to see further expansion of the EU to
incorporate other countries such as Croatia, the Former
Yugoslav Republic of Macedonia and Turkey. Several
other countries in the region such as Switzerland,
Norway and Iceland have no plans to join the EU but
already have various trade and other bilateral agreements with the EU in place.

Methods
Between February and August 2009, a questionnaire
was developed and sent out to the 43 national haemophilia patient organizations affiliated to the EHC in all European countries. Responses were received from 19
countries. The national haemophilia organizations that
responded were not asked to specify the sources of their
data but typically they...
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