Salemi Jason L, Tanner Jean Paul, Block Suzanne, Bailey Marie, Correia Jane A, Watkins Sharon M, Kirby Russell S
Birth Defects Surveillance Program, Department of Community and Family Health, College of Public Health, University of South Florida, 13201 Bruce B. Downs Blvd., MDC56, Tampa, FL 33612-3805, USA.
J Registry Manag. 2011 Spring;38(1):30-8.
Since 1998, the Florida Department of Health (FDOH) has operated the Florida Birth Defects Registry (FBDR), a statewide, population-based, passive surveillance system. Cases are identified by collecting information from extant data sources including the statewide hospital inpatient and ambulatory discharge data sets. Additional data sources include administrative, clinical, and service-related information from the FDOH's Children's Medical Services program for children with special health care needs. Like many state birth defects programs, the FBDR faces diminishing funding and resources that may restrict the registry to hospital discharge data. We conducted an evaluation to quantify the potential under-ascertainment to the FBDR resulting from loss of specific data sources, and to determine if there would be a disproportionate loss of cases by sociodemographic and perinatal characteristics. Analyses involved a series of retrospective reconstructions of the FBDR for 1998-2007 to assess the number of cases that would have been ascertained and reported based on the hypothetical loss of 1 or more of the FBDR source data sets. The reconstructed number of cases identified for each defect category was then compared to the current FBDR (constructed using all 5 source data sets) to determine the proportion of cases that would have been missed if the data sources in question were eliminated. These scenarios were constructed overall and by selected characteristics to identify potential disparities in the proportion of cases missed. The inpatient hospital discharge data set was the primary data source for identification of birth defects in the FBDR. Elimination of this single data source would cause the FBDR to miss nearly three fourths of infants diagnosed with 1 or more of the birth defects under study. Our evaluation revealed that an FBDR constructed on hospital discharge data alone would disproportionately miss more cases born to subgroups of women, including non-Hispanic blacks, Hispanics, and those born outside the US. Despite funding and resource constraints, the FBDR continues efforts to identify data sources that may contribute to completeness of case ascertainment in an effort to serve the needs of the Florida maternal and child health population.
自1998年以来，佛罗里达州卫生部（FDOH）一直在运营佛罗里达州出生缺陷登记处（FBDR），这是一个基于全州人口的被动监测系统。通过从现有数据源收集信息来识别病例，这些数据源包括全州医院的住院病人和门诊出院数据集。其他数据源包括来自FDOH儿童医疗服务项目的行政、临床和与服务相关的信息，该项目针对有特殊医疗需求的儿童。与许多州的出生缺陷项目一样，FBDR面临资金和资源减少的问题，这可能会使登记处只能依赖医院出院数据。我们进行了一项评估，以量化因特定数据源丢失导致FBDR潜在的漏报情况，并确定按社会人口统计学和围产期特征划分，病例漏报是否存在不成比例的情况。分析涉及对1998 - 2007年FBDR进行一系列回顾性重建，以评估基于假设丢失1个或多个FBDR源数据集本应确定和报告的病例数量。然后将为每个缺陷类别确定的重建病例数与当前的FBDR（使用所有5个源数据集构建）进行比较，以确定如果相关数据源被消除会漏报的病例比例。这些情景是总体构建的，并按选定特征构建，以识别漏报病例比例中的潜在差异。住院医院出院数据集是FBDR识别出生缺陷的主要数据源。消除这一单一数据源将导致FBDR漏报近四分之三被诊断患有1种或多种所研究出生缺陷的婴儿。我们的评估表明，仅基于医院出院数据构建的FBDR将不成比例地漏报更多由特定女性亚群体生育的病例，包括非西班牙裔黑人、西班牙裔以及在美国境外出生的女性。尽管存在资金和资源限制，FBDR仍在继续努力寻找可能有助于完善病例确定工作的数据源，以满足佛罗里达州母婴健康人群的需求。
