目的：从直接成本、间接成本两方面估算儿童急性白血病患儿的负担，为提高白血病患儿的医疗保障提供决策依据和经济学基础。方法从病史数据库中获取直接医疗成本数据；以问卷调查的方式获取直接非医疗成本和间接成本数据，然后进行统计分析。结果从第一次就诊到完成治疗疗程期间患儿家庭所产生的平均成本达到222800．67元；其中直接医疗成本占到总成本的51．67％，紧随其后的是间接成本，为27．85％，直接非医疗成本大约占总成本的20．48％。结论儿童白血病对家庭的经济负担不容小觑。首先要完善医疗保障和医疗救助等政策。其次，建议增设患儿父母的特殊病假制度，减少因父母工作收入降低而对家庭的间接经济冲击；再次，引入医务社工发挥其资源转介的优势。%Purpose The aim of this study was to identify the disease -related burden of families with children with Acute Lymphoblastic Leukemia (ALL) including its direct and indirect costs , in order to provide ref-erences to medical insurance policy -makers.Methods Through a comprehensive review of Shanghai Children 's Medical Center(SCMC) database, we were able to get the data of the direct medical expenses of families with chil -dren with ALL.In addition, a self -administrated questionnaire was distributed to the target population to gather information of the direct non -medical expenses and indirect costs .Data were analyzed by using statistical analysis method.Results The average costs of a family with children with ALL are 222,800.67 CNY, which consists of 51.67% direct medical expenses, 27.85% indirect costs, and 20.48% direct non -medical expenses, throughout the entire treatment process.Conclusions ALL pediatric patients and their families will suffer great financial bur -den, and more work has to be done.Firstly, policy -makers need to refine the medical insurance and assistance system; secondly, recommendations for easing the disease -related burden of families with children with ALL are offered in this study;thirdly,medical social workers have to play a bigger role in supporting the target population .
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