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Research highlights barriers to lifelong management of type 1 diabetes

TEACHING people with type 1 diabetes how to embed lifelong habits such as carbohydrate counting into everyday life rather as part of week-long education programmes could significantly reduce their risk of complications from the disease, according to new research.

New National Institute for Health Research-funded research led by Professor Simon Heller, Research and Development Director of Sheffield Teaching Hospitals NHS Foundation and Professor of Clinical Diabetes of the University of Sheffield and Julia Lawton, Professor of Health and Social Science, University of Edinburgh sought to identify why some patients could be taught to manage type 1 diabetes more than others, what the barriers were and whether other models could be developed to make these skills more accessible and effective.

The findings reveal that although many people with type 1 diabetes attending the national Dose Adjustment for Normal Eating (DAFNE) programme ­improved the health and quality of their lives and changed social and psychological behaviour, they often struggled to reduce and keep their vital blood sugar levels close to normal.

The DAFNE programme teaches people with type 1 diabetes to match their insulin dose to their chosen food  intake on a meal by meal basis – factors which are critical in improving blood sugar control. It has been rolled out to more than a third of diabetes centres across the country.

Patients can halve their risk of complications from the disease if average blood sugar levels begin to approach those of people without diabetes.

Professor Simon Heller, Research and Development Director of Sheffield Teaching Hospitals NHS Foundation and Professor of Clinical Diabetes of the University of Sheffield, said: “Many adults with type 1 diabetes struggle to self-manage their diabetes effectively and die prematurely as a result of poor glucose control. This is because the skills needed to inject the right doses of insulin, particularly before every meal are very demanding and contrast markedly from the situation in people without diabetes where this happens automatically. The result is an increased risk of premature death and complications because of long-term high glucose levels.

“Although the DAFNE programme has led to a much more patient-centred approach to the management of type 1 diabetes, equipping patients themselves with the complex skills  to manage their own disease rather keeping this knowledge among nurses or doctors, we hope to build a wider research programme to help people manage their condition even more effectively.

"Our research highlighted that although the DAFNE programme has been highly successful in delivering a step change in the way type 1 diabetes is tackled, the courses do not always work well to help people improve their blood glucose levels. There were also many barriers to sustaining tight blood sugar control including complex calculations of insulin doses and having to count the carbohydrate content of every meal.”

Diabetes patient Steve Randall, 61, of Totley, Sheffield says self-managing the disease by using the skills taught to him on the DAFNE programme on a day-to-day basis rather than on an ad-hoc basis has made all the difference. “I was diagnosed with type 1 diabetes over 20 years ago and since then it’s been very erratic. But learning about how to control my blood sugar levels has done an awful lot to stabilise the disease and I feel much for fitter and abler now. I used to get high levels of exhaustion and I couldn’t see properly. Basically the diabetes wasn’t doing my long-term prospects any good. I’ve always been pretty mathematical so sums and counting carbs are second nature to me. I even mentally gauge how many meals I could eat when I pass the bakery!”

The findings will be used to help modify the current DAFNE programme so that key self-management behaviours such as regular diary/record keeping are sustained through structured professional support after training. The researchers will also look to introduce technological innovations to reduce the complexity of insulin dose calculations, record keeping and blood glucose pattern recognition.  They will also run more trials to assess whether insulin pumps and other technology when provided alongside structured education can lead to improved blood sugar control over the long term.

The research also involved colleagues from the University of Edinburgh and King’s College Hospital London.

The findings can be read in full online at      


Photo: Professor Simon Heller


Claudia Blake, Communications Specialist

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