Exploring the feasibility of using electronic health records in the surveillance of fetal alcohol syndrome.
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ABSTRACT:
SUBMITTER: Hansen C
PROVIDER: S-EPMC4601899 | biostudies-literature | 2014 Feb
REPOSITORIES: biostudies-literature
Publications
Exploring the feasibility of using electronic health records in the surveillance of fetal alcohol syndrome.
Hansen Craig C Adams Marvin M Fox Deborah J DJ O'Leary Leslie A LA Frías Jaime L JL Freiman Heather H Meaney F John FJ
Birth defects research. Part A, Clinical and molecular teratology 20140212 2
<h4>Background</h4>Explore the use of electronic health records (EHRs) in fetal alcohol syndrome (FAS) surveillance systems.<h4>Methods</h4>Using EHRs we identified diagnoses and anthropometric measurements related to the FAS criteria developed by the Fetal Alcohol Syndrome Surveillance Network (FASSNet) among children aged 0 to 12 years.<h4>Results</h4>There were 143,393 distinct children aged between 0 and 12 years enrolled in Kaiser Permanente, Georgia, during the study period. Based on diagn ...[more]
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Project description:IntroductionDisease registers and electronic health records are valuable resources for disease surveillance and research but can be limited by variation in data quality over time. Quality may be limited in terms of the accuracy of clinical information, of the internal linkage that supports person-based analysis of most administrative datasets, or by errors in linkage between multiple datasets.ObjectivesBy linking the National Down Syndrome Cytogenetic Register (NDSCR) to Hospital Episode Statistics for England (HES), we aimed to assess the quality of each and establish a consistent approach for analysis of trends in prevalence of Down's syndrome among live births in England.MethodsProbabilistic record linkage of NDSCR to HES for the period 1998-2013 was supported by linkage of babies to mothers within HES. Comparison of prevalence estimates in England were made using NDSCR only, HES data only, and linked data. Capture-recapture analysis and quantitative bias analysis were used to account for potential errors, including false positive diagnostic codes, unrecorded diagnoses, and linkage error.ResultsAnalyses of single-source data indicated increasing live birth prevalence of Down's Syndrome, particularly in the analysis of HES. Linked data indicated a contrastingly stable prevalence of 12.3 (plausible range: 11.6-12.7) cases per 10 000 live births.ConclusionCase ascertainment in NDSCR improved slightly over time, creating a picture of slowly increasing prevalence. The emerging epidemic suggested by HES primarily reflects improving linkage within HES (assignment of unique patient identifiers to hospital episodes). Administrative data are valuable but trends should be interpreted with caution, and with assessment of data quality over time. Data linkage with quantitative bias analysis can provide more robust estimation and, in this case, stronger evidence that prevalence is not increasing. Routine linkage of administrative and register data can enhance the value of each.
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