Department of Health Research and Policy, Stanford School of Medicine, Stanford, California,
Department of Health Research and Policy, Stanford School of Medicine, Stanford, California, USA.
Neuroepidemiology. 2018;51(3-4):149-157. doi: 10.1159/000488798. Epub 2018 Aug 9.
National administrative healthcare data may be used as a case-finding method for prevalence studies of chronic disease in the United States, but the completeness of ascertainment likely varies depending on the disease under study.
We used 3 case-finding sources (Medicare, Medicaid, and Veterans Administration data) to estimate the prevalence of amyotrophic lateral sclerosis (ALS) in the United States for 2002-2004, and applied the capture-recapture methodology to estimate the degree of under-ascertainment when relying solely on these sources for case identification.
Case-finding completeness was 76% overall and did not vary by race, but was lower for males (77%) than for females (88%), and lower for patients under age 65 (66%) than patients over age 65 (79%). The uncorrected ALS prevalence ratio was 2.8/100,000 in 2002, 3.3/100,000 in 2003, and 3.7/100,000 in 2004. After correcting for under-ascertainment, the annual prevalence increased by approximately 1 per 100,000 to 3.7/100,000 in 2002 (95% CI 3.66-3.80), 4.4/100,000 in 2003 (95% CI 4.34-4.50), and 4.8/100,000 in 2004 (95% CI 4.76-4.91).
Federal healthcare claims databases ascertained are a very efficient method for identifying the majority of ALS-prevalent cases in the National ALS Registry, and may be enhanced by having patients self-register through the registry web portal.
美国的国家行政医疗保健数据可用作慢性病患病率研究的病例发现方法，但根据所研究的疾病，确定的完整性可能有所不同。
我们使用 3 种病例发现来源（医疗保险、医疗补助和退伍军人管理局数据）来估计美国 2002-2004 年肌萎缩侧索硬化症（ALS）的患病率，并应用捕获-再捕获方法来估计仅依靠这些来源进行病例识别时的未发现程度。
病例发现的完整性总体上为 76%，与种族无关，但男性（77%）低于女性（88%），65 岁以下患者（66%）低于 65 岁以上患者（79%）。未校正的 ALS 患病率比为 2002 年每 100,000 人 2.8 例，2003 年每 100,000 人 3.3 例，2004 年每 100,000 人 3.7 例。校正未发现后，每年的患病率增加约 1 例，至 2002 年为每 100,000 人 3.7 例（95%CI 3.66-3.80），2003 年为每 100,000 人 4.4 例（95%CI 4.34-4.50），2004 年为每 100,000 人 4.8 例（95%CI 4.76-4.91）。
联邦医疗保健索赔数据库确定的病例是识别国家 ALS 登记处大多数 ALS 流行病例的非常有效的方法，并且可以通过登记处网络门户让患者自行登记来增强。
