Insulin Dependent Diabetes in Children Under 5: Incidence and Ascertainment Validation for 1992

Objective: To establish the incidence of insulin dependent diabetes diagnosed in children under 5 years of age in the British Isles during 1992, comparing the national and regional results with those of our 1988 national study, and estimating the 1992 study's level of case ascertainment.

Design: Active monthly reporting of cases by consultant paediatricians through the framework of the British Paediatric Surveillance Unit, with additional reports from specialist diabetes nurses and regional health authorities.

Subjects: All children diagnosed under the age of 5 years with primary insulin dependent diabetes from 1 January to 31 December 1992 (inclusive) and resident in the British Isles at diagnosis.

Results: 387 children (208 boys and 179 girls) were confirmed to have insulin dependent diabetes, giving a national incidence of 9.3/100,000/year. This is similar to the 9.9/100,000/year found in 1988. Three sample capture-recapture analysis, which could only be applied across the 12 (out of 18) regions supplying regional information to the study, suggested ascertainment rates of 78% for the British Paediatric Surveillance Unit, 67% for specialist nurses, 69% for regional health authorities, and 99% for the aggregated registry.

Conclusions: The national incidence of diabetes in the under 5s in the British Isles did not differ between 1988 and 1992. Nearly complete (99%) ascertainment of cases was possible only for regions for which three data sources were available. Capture-recapture analysis highlighted both the need for more than one data source and for each data source to be complete for the whole study area.