Creating a National Register of Childhood Type 1 Diabetes Using Routinely Collected Hospital Data

Abstract

PP-31-056 Background/Aims: In England, there is currently no national register of childhood onset insulin-dependant (type 1) diabetes mellitus. Earlier studies have attempted to use hospital data to assess diabetes incidence and prevalence; however, hospital records have improved in quality since the introduction of National Health Service reforms in April 1991, and an updated assessment of the validity of this data source as a proxy for a national register is long overdue. Our aim was to assess the feasibility of using hospital admissions data as a surrogate for a childhood diabetes register across England. Methods: Hospital Episodes Statistics data from England for the period between 1992 and March 2006 referring to children aged 0–14 years with type 1 diabetes diagnosis were cleaned to remove re-admissions to approximate an incident dataset. The cleaned data were validated against regional population-based diabetes register data, available for Yorkshire and Oxfordshire. Results: There were 32,665 unique cases of type 1 and type unknown diabetes for the period April 1992 to March 2006. The validation with the regional register data indicated that the hospital derived data improved in quality over time, and that data quality was better for younger cases (0–9 years) than for older cases (10–14 years). Overall incidence was 24.99 (95% CI: 24.71–25.26) per 100,000 population. Basic trends in the age distribution, seasonality of onset, and incidence matched well with previously reported findings. Conclusion: We were able to create a surrogate register of childhood diabetes for England based on national hospital admissions data, containing ∼2300 cases per year, and geocoded to a high resolution. For younger cases (0–9 years) and more recent years (from 2000 when a unique personal identifier was introduced), these data may prove to be a useful resource for epidemiological studies exploring the determinants of childhood diabetes.