我国唐氏综合征的疾病经济负担研究

目的:对我国唐氏综合征(简称唐氏)经济负担进行测算,促进唐氏预防和控制策略规划的制定。方法:2004年,课题组对河北省、陕西省和上海市三地唐氏患者的直接照料人进行了入户卫生服务调查。唐氏的经济负担包括直接医疗费用、直接非医疗费用和间接费用(如劳动收入损失)。采用发病率方法,对2003年我国每一新发唐氏病例以及所有新发病例生命周期的经济学负担进行测算。结果:课题组在访谈了222位唐氏患者的直接照料人。从患者家庭角度看,2003年我国每一新发唐氏病例的经济负担是39.00万元,所有新发病例的经济负担达70.00亿元;从社会角度看,每一新发唐氏病例的经济负担是人民币45.00万元,所有新发病例的经济损失达人民币81.40亿元。大多数经济损失归因于间接的劳动收入损失。结论:唐氏患者使家庭和社会承受了巨大的经济负担。因此,亟需对唐氏患者及家庭提供社会支持以降低经济负担,同时,开展产前诊断以预防唐氏显得十分必要。

The Economic Burden of Down's Syndrome in China

Objectives: To measure the economic burden of Down's syndrome(DS) in China is to facilitate strategic planning development to control and prevent Down's syndrome. Methods: The household health services survey to caregivers of Down's syndrome patients was conducted in Hebei, Shanxi and Shanghai in 2004. The economic burden of DS is composed of direct medical costs, direct non-medical costs and indirect costs such as productivity loss. The incidence approach is employed to measure the lifetime economic burden of a new DS birth and those of all new cases in China in 2003. Results: 222 DS patients' caregivers were interviewed. From the patient's family perspective, the average economic burden of a new DS case amounts to 0.39 million Yuan, and total economic burden of all new DS cases accumulate to 7.00 billion Yuan in 2003 in China. From the societal perspective, economic burden caused by a new DS case is 0.45 million Yuan, and total economic loss due to all new DS cases amounts to 8.14 billion Yuan. The indirect productivity costs attribute to most of the economic loss. Conclusion: The economic burden of DS is dramatically heavy for the family of a DS patient to bear, as well as to the society. It is urgent to offer the DS families social support to reduce the economic burden and necessary to carry out a prenatal diagnosis strategy to prevent DS.