背景:镰状细胞病(SCD)于1910年首次被认识,并于1949年被确定为一种遗传病。然而,目前还没有一个通用的临床登记系统可以用来估计其患病率.镰状细胞数据收集(SCDC)程序,由疾病控制和预防中心资助,资助州级受赠者从各种来源收集本州内的数据,包括用于识别患有SCD的个人的行政索赔.SCDC行政索赔案例定义的性能已在患有SCD的儿科人群中得到验证,但尚未在成人中进行过测试。
目的:我们研究的目的是评估SCDC行政索赔案例定义的辨别能力,以使用Medicaid保险索赔数据准确识别患有SCD的成年人。
方法:我们的研究使用了来自阿拉巴马州的医疗补助索赔数据和基于医院的医疗记录数据,格鲁吉亚,和威斯康星州SCDC计划,以识别符合SCDC行政索赔案例定义的18岁或以上的个人。为了验证这个定义,我们的研究只包括那些在医疗补助和合作临床机构的记录中被确认的个体.我们使用临床实验室测试和诊断算法来确定该患者子集的真实SCD状态。在几种情况下,总体和州报告了阳性预测值(PPV)。
结果:在5年的时间内,共有1219人(来自阿拉巴马州的354人和来自乔治亚州的865人)被确定。5年的时间周期产生的PPV为88.4%(来自阿拉巴马州的数据为91%,来自乔治亚州的数据为87%),当仅使用实验室确认(金标准)病例的数据作为真阳性时。时间段较窄(3年),数据来自3个州(阿拉巴马州,格鲁吉亚,和威斯康星州),来自这些州的1,432人被纳入我们的研究.总体3年PPV为89.4%(92%,93%,81%的数据来自阿拉巴马州,格鲁吉亚,威斯康星州,分别)当仅将实验室确认的病例视为真实病例时。
结论:根据SCDC病例定义,从行政索赔数据中确定患有SCD的成年人有很高的真正患病概率,特别是如果这些医院有活跃的SCD计划。因此,行政索赔是识别州中患有SCD的成年人并了解其流行病学和医疗保健服务使用的有价值的数据源。
Sickle cell disease (SCD) was first recognized in 1910 and identified as a genetic condition in 1949. However, there is not a universal clinical registry that can be used currently to estimate its prevalence. The Sickle Cell Data Collection (SCDC) program, funded by the Centers for Disease Control and Prevention, funds state-level grantees to compile data within their states from various sources including administrative claims to identify individuals with SCD. The performance of the SCDC administrative claims
case definition has been validated in a pediatric population with SCD, but it has not been tested in adults.
The objective of our study is to evaluate the discriminatory ability of the SCDC administrative claims
case definition to accurately identify adults with SCD using Medicaid insurance claims data.
Our study used Medicaid claims data in combination with hospital-based medical record data from the Alabama, Georgia, and Wisconsin SCDC programs to identify individuals aged 18 years or older meeting the SCDC administrative claims
case definition. In order to validate this definition, our study included only those individuals who were identified in both Medicaid\'s and the partnering clinical institution\'s records. We used clinical laboratory tests and diagnostic algorithms to determine the true SCD status of this subset of patients. Positive predictive values (PPV) are reported overall and by state under several scenarios.
There were 1219 individuals (354 from
Alabama and 865 from Georgia) who were identified through a 5-year time period. The 5-year time period yielded a PPV of 88.4% (91% for data from Alabama and 87% for data from Georgia), when only using data with laboratory-confirmed (gold standard) cases as true positives. With a narrower time period (3-year period) and data from 3 states (Alabama, Georgia, and Wisconsin), a total of 1432 individuals from these states were included in our study. The overall 3-year PPV was 89.4% (92%, 93%, and 81% for data from Alabama, Georgia, and Wisconsin, respectively) when only considering laboratory-confirmed cases as true cases.
Adults identified as having SCD from administrative claims data based on the SCDC
case definition have a high probability of truly having the disease, especially if those hospitals have active SCD programs. Administrative claims are thus a valuable data source to identify adults with SCD in a state and understand their epidemiology and health care service usage.