中国自闭症谱系障碍患儿家庭的直接和间接成本

作者：Zhao, YA (Zhao, Yanan) ; Luo, YA (Luo, Yanan)  ; Zhang, R (Zhang, Rong) ; Zheng, XY (Zheng, Xiaoying)

摘要：Autism spectrum disorder has gained international attention due to its prevalence and the extent to which it can affect families. As a disorder without quantifiable treatment effects, it is easily overlooked in the battle for resources. Estimating family economic burdens and the specific factors that may be associated with them could help in the identification of resources and the promotion of social justice. We examined the family costs from a national family survey with Children with autism spectrum disorder aged 2-6 years (N = 3236). A three-tiered model to quantify the costs was used. The families’ average annual direct cost per child was $24,869.0, including direct medical cost (inpatient, outpatient,drugs, etc.) of $6009.2 and direct nonmedical cost (rehabilitation or educational, rental, transportation, care, and others) of $18,859.8. The annual indirect costs (productivity loss from resignation and job adjustment) for families were $13,990.7. The total costs were $34,206.5. The results of the regression revealed that the mothers’ educational level was significantly associated with costs. Families with an interprovincial immigration background, a higher-than-average income, or children with more severe autism spectrum disorder had a greater possibility of higher direct, indirect, and overall costs. Autism spectrum disorder imposed a significant financial burden on the families of children with autism spectrum disorder. Lay abstract This is the first comprehensive national study to explore the direct and indirect costs for families of children with autism spectrum disorder in China. The increasing prevalence of autism spectrum disorder highlights a growing need for resources to provide care for families of children with autism spectrum disorder. The medical and nonmedical costs and parents’ productivity loss have caused a serious burden on their families. Our objective is to estimate the direct and indirect costs for the families of children with autism spectrum disorder in China. The target population was parents of children with autism spectrum disorder. We analyzed the costs using cross-sectional data from a Chinese national family survey with children aged 2-6 years (N = 3236) who were clinically diagnosed with autism spectrum disorder. Family data from 30 provinces in China were obtained. Cost items included direct medical costs, direct nonmedical costs, and indirect costs. In this study, we found that the largest part of family costs for autism spectrum disorder are nonmedical costs and productivity loss. Autism spectrum disorder has imposed a huge economic burden on parents having children with autism spectrum disorder in China, who need more support than the current health care system provides.

自闭症谱系障碍因其患病率及其对家庭的影响程度而引起国际关注。作为一种没有可量化治疗效果的疾病，在资源争夺战中很容易被忽视。估计家庭经济负担和可能与之相关的具体因素有助于确定资源和促进社会正义。我们检查了对 2-6 岁自闭症谱系障碍儿童 （N = 3236） 的全国家庭调查的家庭成本。使用三层模型来量化成本。这些家庭每个孩子的平均年度直接费用为 24,869.0 美元，包括直接医疗费用（住院、门诊、药物等）为 6009.2 美元，直接非医疗费用（康复或教育、租金、交通、护理等）为 18,859.8 美元。家庭每年的间接成本（辞职和工作调整造成的生产力损失）为13,990.7美元。总费用为34 206.5美元。回归结果显示，母亲的教育水平与成本显著相关。具有跨省移民背景、收入高于平均水平或患有更严重自闭症谱系障碍的儿童的家庭更有可能获得更高的直接、间接和总体成本。自闭症谱系障碍给自闭症谱系障碍儿童的家庭带来了沉重的经济负担。摘要 这是中国首个探讨自闭症谱系障碍儿童家庭直接和间接成本的综合性全国性研究。自闭症谱系障碍患病率的增加凸显了对资源的需求越来越大，以便为自闭症谱系障碍儿童的家庭提供护理。医疗和非医疗费用以及父母的生产力损失给他们的家庭造成了沉重的负担。我们的目标是估计中国自闭症谱系障碍儿童家庭的直接和间接成本。目标人群是自闭症谱系障碍儿童的父母。我们使用来自中国全国家庭调查的横断面数据分析了成本，这些儿童年龄在2-6岁之间，临床上被诊断为自闭症谱系障碍（N = 3236）。从中国30个省份获得家庭数据。成本项目包括直接医疗费用、直接非医疗费用和间接费用。在这项研究中，我们发现自闭症谱系障碍的家庭成本的最大部分是非医疗成本和生产力损失。自闭症谱系障碍给中国自闭症谱系障碍儿童的父母带来了巨大的经济负担，他们需要比目前的医疗保健系统提供的更多的支持。