The incidence of type 1 diabetes mellitus (T1DM) among children and young people in Ireland is one of the highest in Europe, with diabetes incidence rates in the top 25% worldwide. Over the last 25 years, the incidence rate has risen from 16.3 cases per 100,000 population <15yrs in 1997 to 27.3 per 100,000 in 2008 but more recent data shows a stabilisation of the rate to 27.1 cases per 100,000 population in 2018. Management of this chronic condition places huge demands on affected individuals, their families, and the health service. Paediatric T1DM care requires prioritisation because of its high incidence and the significant long-term consequences of suboptimal care.

No national paediatric diabetes audit (NPDA) exists in Ireland, and available data originate from singlecentre, stand-alone, or retrospective studies. The lack of reliable data precludes healthcare professionals from making informed decisions about how to improve services, and means that disparities in paediatric diabetes care may not be identified. A national audit of paediatric T1DM will highlight areas of good practice, identify areas for improvement and will support data-driven resource allocation.

Our daughter has had a very positive experience on her patient journey, from an early diagnosis without diabetic ketoacidosis at the age of 11 years through to independently managing her diabetes with her diabetes pump at the age of 14 years, and we envisage a smooth transition to adult services on the horizon in a few years. All children, regardless of which centre they attend in Ireland, deserve to have the highest level of care when diagnosed with type 1 diabetes mellitus (T1DM). Being involved in this feasibility study has meant that I have been able to use our daughter’s experience to be part of the process of improving care for the many children who will be diagnosed with T1DM in Ireland in the future

Emer Gunne, Public and Patient Interest Representative, National Paediatric Diabetes Audit Feasibility Steering Committee

This study recommends the development of a National Audit of T1DM, with a phased approach. The first phase includes all paediatric T1DM patients aged under 16 years who attend the 19 paediatric centres nationally. Phase 2 involves extending the audit to include affected young adults aged 16-25 years and Phase 3 will incorporate all patients with T1DM nationally. An Individual Health Identifier (IHI) for all with T1DM would support successful implementation of this audit and would allow linkage to existing datasets. Electronic data capture is essential to allow complete, accurate and efficient data collection.

As a country, we invest a lot of money in diabetes care over each patients journey but at the moment, most of this spend is in treating preventable diabetes related complications. We know that tight blood glucose control has been shown definitively to prevent diabetes related complications, so investing early and empowering patients to achieve good control makes sense. Audit allows us to see what we are doing well and what we need to improve and we are outliers in international terms as we do not currently have a national paediatric diabetes audit. This feasibility study supports the need for an audit and the next phase is audit development and implementation.

Professor Nuala Murphy, Chair of the National Paediatric Diabetes Audit Feasibility Steering Committee

NOCA wishes to thank Diabetes Ireland for contributing seed funding to produce this report.

The National Paediatric Diabetes Audit Feasibility Study Report is available to download here. There are videos available to view below from Professor Murphy and Emer Gunne, welcoming the publication of this report.