Salemi Jason L, Tanner Jean Paul, Bailey Marie, Mbah Alfred K, Salihu Hamisu M
J Registry Manag. 2013 Spring;40(1):14-28.
As high-speed computers and sophisticated software packages for data linkage become increasingly available, investigators from nearly every arena are creating massive databases for epidemiologic and comparative effectiveness research (CER). Decisions made during database construction have a major impact on the accuracy and completeness of the data. Considering their potential use in informing health-care decisions, it is vital that we increase transparency of these data, including a thorough understanding of the record linkage strategy implemented and an evaluation of linked and unlinked records so that potential biases can be addressed.
Our target population included infants born to Florida-resident women from January 1, 1998 through December 31, 2009 with a valid birth certificate record. We used a stepwise deterministic record linkage strategy to link to any and all inpatient, ambulatory, and emergency department hospital visits from birth through December 31, 2010, and to identify deaths that occurred within the first year of life. Thus, each infant was followed up for at least 1 year after birth or until death, up to a maximum of 13 years. We investigated linkage rates and associations between linked status (linked vs unlinked) and a host of maternal and infant demographic and reproductive characteristics, all extracted from the birth certificate files. Bivariate county-level maps were created to describe the impact of both maternal race/ethnicity and maternal nativity on the geographic variation in linkage rates.
During the 13-year study period, there were 2,549,738 birth certificate records for infants born alive to Florida resident women, and with no indication of an adoption. We were able to link 2,347,738 (92.1 percent) birth certificate records to an infant birth hospitalization record. The highest crude unlinked rates were seen among infants who died during their first year of life (35.9 percent), births in which the documented principal source of payment was "self-pay" (28.1 percent), and infants born to mothers with less than a ninth-grade education (26.0 percent), who were foreign-born (12.9 percent), and who self-identified as Hispanic (12.8 percent). After adjusting for other related and potentially confounding variables, several of these infant and maternal characteristics were associated with increased odds of failure to link infant birth records.
Using a stepwise deterministic linkage approach, we achieved a high linkage rate of several data sources, and produced a reliable, multipurpose database that can be used for observational, comparative effectiveness, and health services research in maternal and child health (MCH) populations. Our findings underscore the importance of evaluating routinely collected health data and increasing clarity regarding the strengths and limitations of linked electronic data sources. The resultant database will be of immense utility to researchers, health planners, and policy makers as well as other stakeholders interested in MCH outcome studies.
随着高速计算机和用于数据链接的复杂软件包越来越普及，几乎各个领域的研究人员都在创建大规模数据库用于流行病学和比较效果研究（CER）。数据库构建过程中做出的决策对数据的准确性和完整性有重大影响。鉴于这些数据在为医疗保健决策提供信息方面的潜在用途，提高这些数据的透明度至关重要，包括全面了解所实施的记录链接策略以及对链接和未链接记录进行评估，以便能够解决潜在的偏差。
我们的目标人群包括1998年1月1日至2009年12月31日在佛罗里达州居住的妇女所生且有有效出生证明记录的婴儿。我们采用逐步确定性记录链接策略，将从出生到2010年12月31日的任何及所有住院、门诊和急诊科医院就诊记录进行链接，并确定出生后第一年内发生的死亡情况。因此，每个婴儿在出生后至少随访1年或直至死亡，最长随访13年。我们调查了链接率以及链接状态（链接与未链接）与一系列母婴人口统计学和生殖特征之间的关联，所有这些特征均从出生证明文件中提取。创建了双变量县级地图来描述母亲种族/族裔和母亲出生地对链接率地理差异的影响。
在为期13年的研究期间，有2549738份佛罗里达州居住妇女所生存活婴儿的出生证明记录，且无收养迹象。我们能够将2347738份（92.1%）出生证明记录与婴儿出生住院记录进行链接。未链接率最高的情况见于出生后第一年内死亡的婴儿（35.9%）、记录的主要支付来源为“自费”的出生情况（28.1%）以及母亲受教育程度低于九年级的婴儿（26.0%）、外国出生的婴儿（12.9%）以及自我认定为西班牙裔的婴儿（12.8%）。在对其他相关且可能具有混杂作用的变量进行调整后，其中一些婴儿和母亲特征与婴儿出生记录未能链接的几率增加有关。
采用逐步确定性链接方法，我们实现了多个数据源的高链接率，并生成了一个可靠的多用途数据库，可用于母婴健康（MCH）人群的观察性、比较效果和卫生服务研究。我们的研究结果强调了评估常规收集的健康数据以及提高对链接电子数据源的优势和局限性的清晰度的重要性。所得数据库将对研究人员、卫生规划者和政策制定者以及其他对母婴健康结局研究感兴趣的利益相关者具有巨大的实用价值。
