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
AIMS: Incidence of Type 1 diabetes in children is increasing worldwide. Earlier studies suggest that UK south Asian immigrants develop similar rates to the overall UK population, although incidence is lower in their country of origin. This study examines incidence rate trends of childhood Type 1 diabetes in Yorkshire 1978-2007, focusing on differences between south Asians and non-south Asians. METHODS: Data from the population-based Yorkshire Register of Diabetes in Children and Young People were used to estimate incidence (per 100,000 childhood population < 15 years per year) of Type 1 diabetes, stratified by sex, age and ethnicity validated using two name-recognition programs. Age-sex standardized rates were calculated for 1978-2007 and assessed by ethnic-group and deprivation for 1990-2007. We used Poisson regression to assess incidence trends and predict rates until 2020. RESULTS: From 1978-2007, 3912 children were diagnosed. Overall incidence was 18.1 per 100,000 childhood population (< 15 years) per year (95% CI17.6-18.7) and increased significantly over time: 13.2 (1978-1987) to 17.3 (1988-1997) to 24.2 (1998-2007). Average annual percentage change was 2.8% (2.5-3.2). Incidence for non-south Asians (21.5; 20.7-22.4) was significantly higher than for south Asians (14.7; 12.4-17.1). Average annual percentage change increased significantly over 18 years (1990-2007) in non-south Asians (3.4%; 2.7-4.2) compared with a non-significant rise of 1.5% (-1.5 to 4.6) in south Asians. Deprivation score did not affect overall incidence. CONCLUSIONS: Type 1 diabetes incidence rose almost uniformly for non-south Asians, but not for south Asians, contrary to previous studies. Overall rates are predicted to rise by 52% from 2007 to 2020 to 39.0 per 100,000 per year.