Understanding Family Economic Impact of Chronic Child Health Conditions

项目摘要/摘要：拟议的研究将估计#年的家庭财务和时间费用 患有自闭症谱系障碍(ASD)儿童的家庭，并将这些家庭成本与 哮喘儿童(ATA)家庭和健康状况不佳儿童的家庭经历 条件(NSH)。患有自闭症儿童的家庭面临经济成本，例如自付费用 医疗和其他服务，以及来自与管理儿童的ASD相关的需求的时间成本(例如， 协调卫生和学校服务)。此外，与养育子女相关的时间要求和压力 患有自闭症的儿童可能会导致父母就业困难，例如由于自闭症而错过工作时间- 相关照顾责任。所有家庭都会经历与照顾他们的家人相关的经济和时间成本 儿童，甚至是患有NSH的儿童的家庭。然而，之前关于患有糖尿病儿童的家庭成本的报告 癌症等疾病表明，当孩子有很好的健康状况时，费用会大大增加 条件。了解ASD和ATA儿童家庭的额外经济负担将有所帮助 在制定支持家庭的政策方面，例如，为照顾以下家庭的家庭提供新的税收优惠 患有自闭症的儿童，或帮助父母照看的创新干预措施。 到目前为止，关于美国自闭症成本的研究主要集中在直接医疗成本上，以 卫生系统和大多数研究都忽视了从家庭角度考虑的成本。例如，各州 考虑到自闭症保险的授权，通常只考虑它们对保险公司成本的潜在影响，而不是 考虑到这些授权将如何影响其他社会和家庭成本。 我们建议进行迄今为止规模最大、最严格的与ASD相关的家庭成本研究。我们将招募 来自四个不同地域和种族的保健系统的1500个3-17岁儿童家庭： Kaiser Permanente(KP)西北、KP东南、KP加利福尼亚州北部、KP夏威夷和OCHIN 具有联邦资格的卫生中心系统。具体而言，500个自闭症儿童家庭、500个自闭症家庭 ATA儿童和500个NSH儿童家庭将使用Family进行为期一年的跟踪调查 经济影响访谈(FEII)。我们将估计财务成本(例如，自付支出)， 与时间成本(例如，协调护理时间)和雇佣成本(例如，错过工作时间)相关 对患有自闭症、ATA和NSH儿童的家庭的儿童健康。除了这三个目标外，我们还将 还将探讨不同年龄(儿童早期、中期和晚期)、人口统计特征、 以及成本是否与雇主政策和州自闭症政策有关，这些政策可能会缓解 家庭费用方面的自闭症。研究结果将为设计医疗保健、工作场所和 承认自闭症的全面影响的社会政策。

PROJECT SUMMARY/ABSTRACT: The proposed study will estimate family financial and time costs for families of children with an autism spectrum disorder (ASD) and will compare these family costs to those experienced by families of children with asthma (ATA) and families of children with no significant health conditions (NSH). Families of children with ASD face financial costs, such as out-of-pocket expenses for medical and other services, as well as time costs from demands related to managing the child's ASD (e.g., coordinating health and school services). In addition, time demands and stress associated with parenting a child with ASD can lead to employment difficulties for parents, such as missed time from work due to ASD- related care giving responsibilities. All families experience financial and time costs related to caring for their children, even families of children with NSH. However, previous reports of family costs for children with conditions such as cancer suggest that costs are substantially greater when a child has a significant health condition. Understanding the additional economic burden for families of children with ASD and ATA will help in the development of policies to support families, for example, new tax incentives for families caring for children with ASD, or innovative interventions to aid parents in caregiving. Research to date on the cost of ASD in the United States has focused on direct health-care costs to health systems and most studies have ignored costs from the family perspective. For example, states considering autism insurance mandates often consider only their potential effect on costs to insurers, without considering how these mandates would affect other societal and family costs. We propose the largest and most rigorous study to date of family costs related to ASD. We will recruit 1500 families of children 3-17 years old from four geographically and ethnically diverse health systems: Kaiser Permanente (KP) Northwest, KP Southeast, KP Northern California, KP Hawaii, and the OCHIN system of federally qualified health centers. Specifically, 500 families of children with ASD, 500 families of children with ATA, and 500 families of children with NSH will be followed for one year using the Family Economic Impact Interview (FEII). We will estimate financial costs (e.g., out-of-pocket expenditures), time costs (e.g., time coordinating care), and employment costs (e.g., missed time from work) related to child's health for families of children with ASD, ATA and NSH. In addition to these three aims, we will also explore how family costs differ by age (early, middle, and late childhood), demographic characteristics, and whether costs are related to employer policies and state autism policies that may moderate the impact of ASD on family costs. Findings will provide essential information for designing health-care, workplace, and social policies that recognize the full impact of autism.