Muscular Dystrophy Association, 3300 E Sunrise Drive, Tucson, Arizona, 85718, USA.
Muscle Nerve. 2014 Mar;49(3):431-8. doi: 10.1002/mus.23942. Epub 2014 Jan 28.
We conducted a comprehensive study of the costs associated with amyotrophic lateral sclerosis (ALS), Duchenne muscular dystrophy (DMD). and myotonic dystrophy (DM) in the U.S.
We determined the total impact on the U.S. economy, including direct medical costs, nonmedical costs, and loss of income. Medical costs were calculated using a commercial insurance database and Medicare claims data. Nonmedical and indirect costs were determined through a survey of families registered with the Muscular Dystrophy Association.
Medical costs were driven by outpatient care. Nonmedical costs were driven by the necessity to move or adapt housing for the patient and paid caregiving. Loss of income correlated significantly with the amount of care needed by the patient.
We calculated the annual per-patient costs to be $63,693 for ALS, $50,952 for DMD, and $32,236 for DM. Population-wide national costs were $1,023 million (ALS), $787 million (DMD), and $448 million (DM).
我们在美国进行了一项关于肌萎缩侧索硬化症（ALS）、杜氏肌营养不良症（DMD）和强直性肌营养不良症（DM）相关成本的综合研究。
我们确定了对美国经济的总影响，包括直接医疗成本、非医疗成本和收入损失。医疗成本是使用商业保险数据库和医疗保险索赔数据计算的。非医疗和间接成本是通过对肌肉萎缩症协会注册家庭的调查确定的。
医疗成本由门诊护理驱动。非医疗成本由为患者搬迁或调整住房以及支付护理费用的必要性驱动。收入损失与患者所需护理量显著相关。
我们计算出 ALS 患者的年人均费用为 63693 美元，DMD 患者为 50952 美元，DM 患者为 32236 美元。全国范围内的人口成本分别为 10.23 亿美元（ALS）、7.87 亿美元（DMD）和 4.48 亿美元（DM）。
