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New guidance sets out how to support people with early-stage type 1 diabetes

New international guidance detailing how to monitor and support people with early-stage type 1 diabetes (T1D) has the potential to reduce the trauma associated with being diagnosed with T1D, enable people to access the latest treatments to delay the need for insulin therapy, and reduce long-term health complications.
Content last reviewed and updated: 28.06.2024

A researcher sits in a lab beside screening samples and lab equipment for early detection of type 1 diabetes.

Thanks to increased understanding of T1D and how it develops, it is now possible to screen people for T1D and diagnose the condition in its early stages before insulin therapy is needed. This breakthrough enables T1D to be treated like never before. It allows people to prepare for life with the condition and the possibility to receive therapies that have the potential to delay the onset of symptoms and their need to take insulin. The new guidance establishes how people should be supported and monitored to reduce the mental and financial burden of T1D, allowing people to live well with their diagnosis.

Reducing diabetic ketoacidosis at diagnosis

Type 1 diabetes progresses gradually in stages and is usually diagnosed at a point when insulin treatment is already required, which can result in hospital stays. If type 1 is not identified quickly enough it can also lead to diabetic ketoacidosis (DKA), which can be fatal. Currently, one in four 1 in 4 children (25.6%) are diagnosed with type 1 as an emergency in DKA in the UK.

Monitoring can significantly reduce the incidence of DKA at diagnosis and facilitate education about the signs and symptoms to look for as the stages of type 1 progress. Evidence shows that identifying T1D in these early stages, known as early-stage or presymptomatic T1D, has significant mental and physical health benefits. These include preventing DKA and long-term health complications, while also being more cost effective for healthcare systems.

First international guidance of its kind

In the UK and around the world, there are research projects screening children and adults for type 1 diabetes. But prior to this guidance, published today in Diabetologia, there was no consensus on how best to monitor disease progression in people with early-stage type 1 diabetes. Driven by Breakthrough T1D, formerly JDRF International, and endorsed by key diabetes organisations including the American Diabetes Association, the European Association for the Study of Diabetes, and the International Society for Paediatric and Adolescent Diabetes, the newly released monitoring guidance outlines several recommendations.

The guidance establishes for the first time how adults, children, and pregnant individuals diagnosed as ‘at risk’ of or with early-stage type 1 diabetes should be supported and monitored. This includes the best methods and recommended frequency for re-testing to monitor disease progression across pre-symptomatic stages, as well as the point at which insulin should be introduced.

Recommendations from the guidance

The publication recommends partnerships between diabetes specialists and primary care to provide people with early-stage T1D with regular blood glucose checks, education about type 1 diabetes and access to clinical trials and emerging treatments. It also outlines what is required among health care practitioners to ensure pre-symptomatic detection and follow up is successful, and the educational needs and psychosocial support that individuals and families may require are met.

Another detail in the guidance states that people with early-stage T1D should be offered approved therapies to delay their need for insulin treatment. If none are approved where they live, they should have the opportunity to participate in clinical trials of emerging therapies. The guidance also emphasises the need for further research involving people at-risk of and those with early-stage T1D to increase the rigour of future recommendations and inform clinical care.

A consensus of international experts

More than 60 international T1D experts have co-authored the consensus document, including Breakthrough T1D-funded researchers and expert members of the staff team.

Hilary Nathan, JDRF UK Director of Policy and Communications, said:

“This international guidance is a vital step towards supporting those at risk or in the early stages of type 1 diabetes. There is overwhelming evidence that detecting the condition in its earliest stages leads to better health outcomes and reduced costs for healthcare systems. We will use this guidance to encourage policymakers to establish an early detection programme for children and young people in the UK.”

Dr Rachel Besser, Consultant Paediatric Diabetologist at the University of Oxford, chaired the working group on monitoring in children and adolescents for the report. Dr Besser leads the UK registry for children, young people and adults who are at risk of type 1 diabetes. Dr Besser said:

“This consensus fills a much-needed gap, by providing straight-forward and actionable advice to healthcare professionals about how to monitor and support children, young people and adults with biological markers of type 1 diabetes, who are either at risk of the condition, or who are in its early stages. Screening children for type 1 diabetes is not enough to prevent life-threatening illness: once identified they and their family need education, support, and monitoring to identify progression to type 1 diabetes early. We are already using this guidance in our national pre-T1D clinic, and it works!”

Professor Helen Colhoun, a Breakthrough T1D-funded researcher and co-author of the guidance, said:

“This consensus guidance recognises the need for further research evidence to define the optimal strategy for monitoring people at increased risk of or at an early stage of type 1 diabetes. In the meantime, it provides much needed guidance and clarity for monitoring and supporting these people now.”

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