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Comprehensive care for haemophilia around the world
B L Evatt1, C Black, A Batorova
1Division of Hereditary Blood Disorders, National Center for Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, USA.
Abstract:
Comprehensive haemophilia care has been defined as the continuing supervision of all medical and psychosocial factors affecting the person with haemophilia family. Services offered by haemophilia treatment centres (HTCs) adopting the comprehensive care model include establishing prophylaxis and other treatment protocols, development of psychosocial, education and research programme, maintenance of a patient registry, genetic and reference diagnostic services and orchestration and management of a wide variety of multidisciplinary interventions. Most centres practising this model of care are based in developed countries and can meet costs for plentiful treatment products through government or insurance-company funding. Not all the programmes are dependent on the level of product supply, however, and many have been supported in countries with emerging economies as part of national healthcare systems, particularly in relation to blood management. In this paper we present perspectives from different areas of the world on how to adopt, adapt and achieve economically appropriate models of comprehensive care.
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