The Brecon Group (Welsh Paediatric Diabetes Interest Group) was established in 1995 given the need to advise Welsh Government regarding commissioning of paediatric diabetes services. A diagnostic register was created using a minimal data-set to identify the numbers of young people aged <15 years with diabetes in Wales and to establish national audit. This allowed us to show the benefits of appointment of paediatric diabetes specialist nurses but also the lack of impact of a poster campaign to promote awareness of diabetes, facilitate an earlier diagnosis and reduce the risk of presentation in ketoacidosis. We have now integrated an anonymised version of this data-set within the Secure Anonymised Information Linkage Databank (SAIL) allowing linkage of anonymised individuals data across data-sets. Analyses of linked data-sets show a 5 to 6-fold increased risk of all cause hospital admissions for young people with diabetes, disproportionately so in the very young, those from more deprived backgrounds and those cared for in smaller units around Wales. The National Children and Young Peoples Diabetes Network in Wales is therefore initiating a national out of hours on-call system, to provide young people and their families with clinical advice, regardless of where their diabetes is treated. Further analyses have shown a near 3-fold increased mortality in our young cohort. We have also evaluated the nature of increased contact with primary care that children developing diabetes experience in the year before diagnosis. This latter work provides the basis for developing an early warning tool to assist GPs in the recognition of a child developing diabetes, promoting an earlier diagnosis and reducing the risk of ketoacidosis. This registry has therefore provided a powerful tool through pseudo-anonymised linkage, to investigate a range of further outcomes (e.g. pregnancy, alcohol-related admissions, diabetes-specific complications and educational achievement) to inform the management of diabetes in childhood and young adult life.
27 - 29 Nov 2019
British Society for Paediatric Endocrinology and Diabetes