BACKGROUND: To measure the economic burden of Down syndrome (DS) in China is to facilitate strategic planning development for managing and preventing DS. METHODS: The economic burden of DS was calculated from direct healthcare costs, direct non-health-care costs, and indirect costs. The incidence approach was employed to measure the lifetime economic burden of a new DS birth in China in 2003. Most parameters came from a household health services survey, which was given to caregivers of people with DS. This survey was conducted in Hebei, Shaanxi, and Shanghai in 2004. RESULTS: Caregivers of 222 people with DS were interviewed in six cities and neighboring rural areas. Average expenses and utilization rate of different services by age groups from this sample were obtained to estimate the economic burden of DS. The average lifetime economic burden of a new DS case from the family perspective and the societal perspective amounted to US$47,000 and US$55,000, respectively. Indirect (productivity) costs were responsible for most of the total economic loss. Sensitivity analysis showed that the incidence rate, survival rate, value of productivity such as GDP per capita or salary, productivity of people with DS, and utilization rate of related services were influencing factors to the economic burden of DS. CONCLUSIONS: The economic burden of DS is substantial for the family of a person with DS, as well as to society. Appropriate management and prevention of DS is needed to reduce the heavy burden for people with DS and their families. Birth Defects Research (Part A) 2008. (c) 2007 Wiley-Liss, Inc.
BACKGROUND: To measure the economic burden of Down syndrome (DS) in China is to facilitate strategic planning development for managing and preventing DS. METHODS: The economic burden of DS was calculated from direct healthcare costs, direct non-health-care costs, and indirect costs. The incidence approach was employed to measure the lifetime economic burden of a new DS birth in China in 2003. Most parameters came from a household health services survey, which was given to caregivers of people with DS. This survey was conducted in Hebei, Shaanxi, and Shanghai in 2004. RESULTS: Caregivers of 222 people with DS were interviewed in six cities and neighboring rural areas. Average expenses and utilization rate of different services by age groups from this sample were obtained to estimate the economic burden of DS. The average lifetime economic burden of a new DS case from the family perspective and the societal perspective amounted to US$47,000 and US$55,000, respectively. Indirect (productivity) costs were responsible for most of the total economic loss. Sensitivity analysis showed that the incidence rate, survival rate, value of productivity such as GDP per capita or salary, productivity of people with DS, and utilization rate of related services were influencing factors to the economic burden of DS. CONCLUSIONS: The economic burden of DS is substantial for the family of a person with DS, as well as to society. Appropriate management and prevention of DS is needed to reduce the heavy burden for people with DS and their families. Birth Defects Research (Part A) 2008. (c) 2007 Wiley-Liss, Inc.