ABSTRACT
INTRODUCTION: Disease 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. OBJECTIVES: By 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. METHODS: Probabilistic 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. RESULTS: Analyses 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. CONCLUSION: Case 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.
ABSTRACT
Many of the distinctions made between probabilistic and deterministic linkage are misleading. While these two approaches to record linkage operate in different ways and can produce different outputs, the distinctions between them are more a result of how they are implemented than because of any intrinsic differences. In the way they are generally applied, probabilistic and deterministic procedures can be little more than alternative means to similar ends-or they can arrive at very different ends depending on choices that are made during implementation. Misconceptions about probabilistic linkage contribute to reluctance for implementing it and mistrust of its outputs. We aim to explain how the outputs of either approach can be tailored to suit the intended application, but also to highlight the ways in which probabilistic linkage is generally more flexible, more powerful and more informed by the data. This is accomplished by examining common misconceptions about probabilistic linkage and its difference from deterministic linkage, highlighting the potential impact of design choices on the outputs of either approach. We hope that better understanding of linkage designs will help to allay concerns about probabilistic linkage, and help data linkers to select and tailor procedures to produce outputs that are appropriate for their intended use.