Early Detection of type 1 Diabetes in Youth: the EDDY feasibility study

Lead investigator
Professor Lesley Lowes, Cardiff University

The incidence of type 1 diabetes (T1D) in children is increasing. If T1D is undetected and untreated, life-threatening diabetic ketoacidosis (DKA) occurs – the most common cause of death in children with T1D.

In this study, a multi-component Community Diabetes Intervention will be developed, to increase awareness of the symptoms of T1D.

We will assess the relevance and acceptability of the intervention, and the role, contribution and impact of each component. Exploring the patient pathway from symptoms to diagnosis, the study also aims to identify factors that might influence help-seeking behaviour, and those that may help or hinder early diagnosis.


If type 1 diabetes is left untreated, diabetic ketoacidosis (DKA) occurs, which can lead to vomiting, dehydration, coma and death. Morbidity and mortality are increased through late diagnosis or delayed treatment. DKA is the most common cause of death in children with T1D (Edge et al, 1999), leading to the death of approximately 10 children a year in the UK.


There have been few interventions to reduce the incidence of DKA, and these have been varied in their methods and success. However, existing research suggests that a community intervention that raises awareness of symptoms of new onset type 1 diabetes can reduce the rate of DKA at diagnosis in children. Given the mixed results and limitations of previous work, any community educational tool implemented in Wales needs to be developed with involvement from stakeholders, and evaluated in terms of cost and feasibility.

Aims & objectives
To develop, deliver and evaluate a multi-component community diabetes intervention for parents of children under 18 years of age, and community health practitioners. The intervention is designed to increase awareness of the symptoms of type 1 diabetes (T1D) and reduce the incidence of children presenting in life-threatening diabetic ketoacidosis (DKA) at diagnosis. Outcomes will inform subsequent development of the intervention for a large-scale controlled population intervention study in the future.
Study design

Feasibility study.
The multi-component community diabetes intervention will be delivered in Cardiff and the Vale and Bridgend. It will be targeted at parents of children under 18 years of age, and community health practitioners (e.g. GPs, practice nurses).

The intervention for parents will be developed during the first three months of this feasibility study and may include:

  • Laminated bilingual (Welsh/English) information cards;
  • Laminated fridge magnets;
  • Bilingual explanatory letters and/or leaflets;
  • Community DLN engagement with schools and nurseries, and liaison with health visitors.

The intervention for GPs and practice nurses will be similar but may also include:

  • Glucose/ketone urinalysis dipsticks;
  • Reinforcement of diabetes awareness information by Community DLNs.

Additionally, two community diabetes liaison nurses will be trained to facilitate and coordinate delivery of diabetes education to schools and GP surgeries.

The interventions will be distributed to all nurseries, schools and GP practices in Bridgend, Cardiff and the Vale using a commercial delivery service. Health visitors will deliver the intervention to parents of younger children during the child’s 18 month check.

Data Collection
All parents of children diagnosed with T1D during the study will be invited to participate in a qualitative interview to gain a better understanding of the patient pathway, and explore factors influencing help-seeking behaviour. All GPs of newly diagnosed children will be invited to participate in qualitative interviews to identify factors that facilitated or hindered identification of T1D. The impact of different components of the intervention will be explored. In addition, quantitative data will be collected from the Brecon Group data base of children diagnosed with T1D during the study period.

Data Analysis
Qualitative interview data will be analysed using thematic analysis. Frequency of the success of each component will be summated to provide information that informs future study. Patient demographics will be analysed descriptively.

Start date
1 January 2014
End date
31 December 2015

National Institute for Health and Social Care Research (NISCHR) Research for Patient and Public Benefit (RfPPB)

Trial register number
Funder Reference: RfPPB - 1011