Romley John A, Shah Aakash K, Chung Paul J, Elliott Marc N, Vestal Katherine D, Schuster Mark A
Leonard D. Schaeffer Center for Health Policy and Economics, University of Southern California, Los Angeles, California.
RAND Corporation, Santa Monica, California.
Pediatrics. 2017 Jan;139(1). doi: 10.1542/peds.2016-1287.
Many children with special health care needs (CSHCN) receive health care at home from family members, but the extent of this care is poorly quantified. This study's goals were to create a profile of CSHCN who receive family-provided health care and to quantify the extent of such care.
We analyzed data from the 2009-2010 National Survey of Children with Special Health Care Needs, a nationally representative sample of 40 242 parents/guardians of CSHCN. Outcomes included sociodemographic characteristics of CSHCN and their households, time spent by family members providing health care at home to CSHCN, and the total economic cost of such care. Caregiving hours were assessed at (1) the cost of hiring an alternative caregiver (the "replacement cost" approach), and (2) caregiver wages (the "foregone earnings" approach).
Approximately 5.6 million US CSHCN received 1.5 billion hours annually of family-provided health care. Replacement with a home health aide would have cost an estimated $35.7 billion or $6400 per child per year in 2015 dollars ($11.6 billion or $2100 per child per year at minimum wage). The associated foregone earnings were $17.6 billion or $3200 per child per year. CSHCN most likely to receive the greatest amount of family-provided health care at home were ages 0 to 5 years, were Hispanic, lived below the federal poverty level, had no parents/guardians who had finished high school, had both public and private insurance, and had severe conditions/problems.
US families provide a significant quantity of health care at home to CSHCN, representing a substantial economic cost.
许多有特殊医疗需求的儿童（CSHCN）在家中接受家庭成员提供的医疗保健，但这种护理的程度缺乏量化。本研究的目标是描绘接受家庭提供医疗保健的CSHCN的概况，并量化这种护理的程度。
我们分析了2009 - 2010年全国有特殊医疗需求儿童调查的数据，该调查是对40242名CSHCN的父母/监护人进行的具有全国代表性的抽样调查。结果包括CSHCN及其家庭的社会人口学特征、家庭成员在家中为CSHCN提供医疗保健所花费的时间，以及这种护理的总经济成本。护理时长通过以下两种方式评估：（1）雇佣替代护理人员的成本（“替代成本”方法），以及（2）护理人员的工资（“放弃收入”方法）。
约560万美国CSHCN每年接受家庭提供的15亿小时医疗保健服务。2015年，若用家庭健康助理替代，估计成本为357亿美元，即每个孩子每年6400美元（按最低工资计算，每个孩子每年116亿美元或2100美元）。相关的放弃收入为每年176亿美元，即每个孩子每年3200美元。最有可能在家中接受最多家庭提供医疗保健服务的CSHCN年龄在0至5岁之间，为西班牙裔，生活在联邦贫困线以下，父母/监护人没有高中文凭，同时拥有公共和私人保险，且患有严重疾病/问题。
美国家庭在家中为CSHCN提供了大量医疗保健服务，这代表了巨大的经济成本。
