Santiago-Borrero P J, Ortiz I, Rivera-Caragol E, Maldonado N I
Hematology-Oncology Section, Department of Paediatrics, University of Puerto Rico, Medical Sciences Campus School of Medicine, San Juan, Puerto Rico 00936-5067, USA.
Haemophilia. 1999 Nov;5(6):386-91. doi: 10.1046/j.1365-2516.1999.00359.x.
The present cost of optimal care in haemophilia is very high. The paradigm of comprehensive care approach, including the essential elements of continuous integrated multidisciplinary health services and the provision of home care with early use of antihaemophilic products requires abundant economic resources that usually are not readily available in nonaffluent countries. A cost-effective comprehensive paediatric haemophilia programme has been operating in Puerto Rico during the last 15 years that provides quality care to over 90% of paediatric haemophiliacs, and is financed mainly by the local government health system. Efforts are also being made to provide and/or coordinate health care to all adult haemophilic patients through the Puerto Rico Pediatric Hemophilia Treatment Center. Information on the haemophilia care available in Latin American countries is scanty. The data available indicate that with a few exceptions, haemophilia care in this vast region is suboptimal. Apparently, early diagnosis is not common, there is lack of accessibility of services in most countries, comprehensive care is not the rule, safe high-purity AHF concentrates are used infrequently, and home care is used rarely. The main antihaemophilic products used are fresh frozen plasma and cryoprecipitate due to the high cost of modern antihaemophilic factor concentrates. The average per capita income of the main Latin American countries is about one-quarter of that of the USA and Canada. The existing economic situation of most Latin American countries would make it very difficult for them to purchase modern antihaemophilic products regularly and provide quality comprehensive care to their haemophilia patients, unless they make special efforts and get some type of external help. As a result of this study recommendations are made to improve the quality and accessibility of services to haemophilia patients in Latin America and other nonaffluent countries.
目前血友病最佳治疗的成本非常高。全面护理方法的模式,包括持续综合多学科医疗服务的基本要素以及早期使用抗血友病产品的家庭护理,需要大量经济资源,而这些资源在不富裕国家通常难以获得。在过去15年里,波多黎各一直在实施一项具有成本效益的综合性儿科血友病项目,为90%以上的儿科血友病患者提供优质护理,该项目主要由当地政府卫生系统资助。同时,波多黎各儿科血友病治疗中心也在努力为所有成年血友病患者提供和/或协调医疗服务。关于拉丁美洲国家血友病护理的信息很少。现有数据表明,除少数例外,这个广大地区的血友病护理并不理想。显然,早期诊断并不常见,大多数国家的医疗服务难以获得,全面护理并非惯例,很少使用安全的高纯度抗血友病因子浓缩剂,家庭护理也很少采用。由于现代抗血友病因子浓缩剂成本高昂,主要使用的抗血友病产品是新鲜冷冻血浆和冷沉淀。拉丁美洲主要国家的人均收入约为美国和加拿大的四分之一。大多数拉丁美洲国家目前的经济状况将使它们很难定期购买现代抗血友病产品并为血友病患者提供优质的全面护理,除非它们做出特别努力并获得某种外部帮助。这项研究的结果提出了一些建议,以提高拉丁美洲和其他不富裕国家血友病患者的医疗服务质量和可及性。