Rare Diseases Social Epidemiology: Analysis of Inequalities
Rare Diseases Social Epidemiology: Analysis of Inequalities
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DOI：
10.1007/978-90-481-9485-8_14
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发表时间：
2010-01-01
期刊：
影响因子：
--
通讯作者：
Faurisson, Francois
中科院分区：
文献类型：
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作者：
Kole, Anna;Faurisson, Francois
罕见病患者在获得高质量医疗保健方面遇到特殊障碍。这些障碍包括但不限于：（一）缺乏对其疾病的科学知识，（二）无法获得正确的诊断，（三）诊断延误，（四）缺乏适当的多学科保健，（五）诊断时缺乏高质量的信息和支持，（六）不适当的社会后果，（七）在获得治疗、康复和护理方面存在不公平和困难，（八）对医疗和社会服务不满意和失去信心，（九）保健专业人员拒绝治疗，（十）缺乏孤儿药。由欧洲罕见病组织（EURORDIS）进行的三项调查及其随后的分析，通过描述18种罕见病和超过24个欧洲国家的罕见病患者的经历以及强调他们之间存在的不平等，证明了其中的几个障碍。
Rare disease patients experience particular obstacles in accessing high quality healthcare. These obstacles include but are not limited to: (i) lack of scientific knowledge of their disease, (ii) lack of access to correct diagnosis, (iii) delays in diagnosis, (iv) lack of appropriate multidisciplinary healthcare, (v) lack of quality information and support at the time of diagnosis, (vi) undue social consequences, (vii) inequities and difficulties in access to treatment, rehabilitation and care, (viii) dissatisfaction with and loss of confidence in medical and social services, (ix) denied treatment by health professionals and (x) lack of availability of orphan drugs. Three surveys and their subsequent analysis, conducted by the European Organisation for Rare Diseases (EURORDIS), a non-governmental patient driven alliance of European patient organisations, demonstrate several of these obstacles by describing the experience of rare disease patients across 18 rare diseases and over 24 European countries as well as highlighting inequalities that exist between them.