Premium
Principles of haemophilia care: The Asia‐Pacific perspective
Author(s) -
Dunkley S.,
Lam J. C. M.,
John M. J.,
Wong R. S. M.,
Tran H.,
Yang R.,
Nair S. C.,
Shima M.,
Street A.,
Srivastava A.
Publication year - 2018
Publication title -
haemophilia
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.213
H-Index - 92
eISSN - 1365-2516
pISSN - 1351-8216
DOI - 10.1111/hae.13425
Subject(s) - haemophilia , medicine , perspective (graphical) , health care , stakeholder , nursing , public relations , economic growth , political science , pediatrics , artificial intelligence , computer science , economics
Optimal haemophilia care is best established and implemented through a well‐coordinated plan guided by clearly defined principles and priorities. A document which enunciates those details is therefore important. A successful example of this approach is the definition of principles of haemophilia care (PHC) outlined by the European Association for Haemophilia and Associated Disorders (EAHAD) and also the World Federation of Hemophilia. A similar document applicable to the Asia‐Pacific region must take into account not only the highly varied healthcare systems but also the tremendous socio‐economic and cultural diversities which impact provision of such care. The Asia‐Pacific Haemophilia Working Group (APHWG), representing the countries in this region, has prepared this perspective of the PHC. While endorsing the overall framework outlined by EAHAD, this APHWG document emphasizes regional priorities on education and training of healthcare personnel in the diagnosis and management of hereditary bleeding disorders. Central coordinating agencies with wide stakeholder input, networks of haemophilia treatment centres and national registries as well as robust processes for procurement and distribution of safe and effective clotting factor concentrates (CFCs), implementation of prophylaxis programmes and management of patients with inhibitors should also be developed. The implementation of these strategies should lead to establishment of good comprehensive care programmes. This document should also be an advocacy tool to lobby for improved care for people with haemophilia (PWH) in the region. We urge national healthcare policy makers to consider these principles and initiate strong and decisive action to reach these goals.