New international review co-authored by ACBRD’s Dr Elizabeth Holmes-Truscott highlights the psychosocial needs of people and families
Type 1 diabetes can start to develop years before symptoms appear. It is now possible to find early signs of type 1 diabetes before a person feels unwell. This is done by checking the blood for autoantibodies. They are a sign that the immune system has started attacking the cells that make insulin.
Finding type 1 diabetes early can have important benefits:
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- It gives the person and their family more time to understand what is happening. They can learn about the signs and symptoms to look out for. They can also prepare for ongoing checks and future treatment, if needed.
- It can reduce the risk of a dangerous complication called diabetes-related ketoacidosis (DKA). DKA happens when a severe lack of insulin forces the body to burn fat for fuel, causing harmful acids build up in the blood. It is a life-threatening emergency, which makes the person very unwell. DKA needs urgent treatment in hospital. DKA is often the way that type 1 diabetes is diagnosed, but it doesn’t have to be.
Finding out early that type 1 diabetes is developing can also bring emotional challenges, such as worry and living with uncertainty. People and families may know that diabetes is developing but not when it will progress or when treatment will be needed.
A new international review, co-authored by ACBRD Deputy Director Dr Elizabeth Holmes-Truscott, looks at the emotional and psychological impact of early detection. The review brings together research from around the world. It also includes views from experts in psychology, diabetes care and research, as well as people with lived experience.
Research suggests that some people and families may experience more anxiety, diabetes distress or low mood after autoantibodies are found. Not knowing if or when type 1 diabetes will progress can be hard.
The review highlights three priorities for future early detection programs:
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- Language matters. Information needs to be clear, respectful and free from stigma. The words we use shape how people understand and respond to early detection.
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- People need genuine choice. Decisions about early detection need to reflect each person’s values, experiences and needs. Choosing not to be screened is also a valid choice.
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- Emotional support needs to be part of care. Support should be available when people are deciding about early detection, receiving results and navigating ongoing monitoring.
As early detection becomes more widely available, the review highlights an important message. Finding type 1 diabetes earlier is not only about physical health and medical care. It is also about supporting how people and families feel and cope with the uncertainty of what comes next. Emotional and psychological support must be part of early detection from the start.
Reference:
de Wit M, Klinker LY, Moore B, Boggiss A, Feito Allonca L, Asaad M, Bebbington K, Cleal B, Huisman S, Winterdijk P, Aanstoot HJ, Fransman C, Holmes-Truscott E, Hermanns N, Nefs G. Psychosocial aspects of early detection in type 1 diabetes: Language matters, decision making and support needs. Diabetic Medicine. 2026; e70308.
