Completeness and Accuracy of Local Clinical Registry Data for Children Undergoing Heart Surgery

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• 作者：Meena Nathan ; MD ; MPH^a ; ^{meena.nathan@cardio.chboston.org} ; Marshall L. Jacobs ; MD^b ; J. William Gaynor ; MD^c ; Jane W. Newburger ; MD ; MPH^p ; Carolyn Dunbar Masterson ; BSN ; RN^p ; Linda M. Lambert ; MSN-FNP^d ; Danielle Hollenbeck-Pringle ; MPH^e ; Felicia L. Trachtenberg ; PhD^e ; Owen White ; BS^f ; Brett R. Anderson ; MD ; MBA^g ; Margaret C. Bell ; RN ; MS^e ; Phillip T. Burch ; MD^d ; Eric M. Graham ; MD^h ; Jonathan R. Kaltman ; MDⁱ ; Kirk R. Kanter ; MD^j ; Carlos M. Mery ; MD ; MPH^k ; Christian Pizarro ; MD^l ; Marcus S. Schamberger ; MD^m ; Michael D. Taylor ; MDⁿ ; Jeffrey P. Jacobs ; MD^q ; Sara K. Pasquali ; MD ; MHS^o ; for the Pediatric Heart Network Investigators
• 刊名：The Annals of Thoracic Surgery
• 出版年：2017
• 出版时间：February 2017
• 年：2017
• 卷：103
• 期：2
• 页码：629-636
• 全文大小：364 K
• 卷排序：103

文摘

Data routinely captured in clinical registries may be leveraged to enhance efficiency of prospective research. The quality of registry data for this purpose has not been studied, however. We evaluated the completeness and accuracy of perioperative data within congenital heart centers’ local surgical registries.MethodsWithin 12 Pediatric Heart Network (PHN) sites, we evaluated 31 perioperative variables (and their subcategories, totaling 113 unique fields) collected via sites’ local clinical registries for submission to The Society of Thoracic Surgeons Database, compared with chart review by PHN research coordinators. Both used standard STS definitions. Data were collected on 10 subjects for 2 to 5 procedures/site and adjudicated by the study team. Completeness and accuracy (agreement of registry data with medical record review by PHN coordinator, adjudicated by the study team) were evaluated.ResultsA total of 56,500 data elements were collected on 500 subjects. With regard to data completeness, 3.1% of data elements were missing from the registry, 0.6% from coordinator-collected data, and 0.4% from both. Overall, registry data accuracy was 98%. In total, 94.7% of data elements were both complete/non-missing and accurate within the registry, although there was variation across data fields and sites. Mean total time for coordinator chart review per site was 49.1 hours versus 7.0 hours for registry query.ConclusionsThis study suggests that existing surgical registry data constitute a complete, accurate, and efficient information source for prospective research. Variability across data fields and sites also suggest areas for improvement in some areas of data quality.