Helping people to manage diabetes type 1 – the BUDiE Study
Training courses proven to make a difference
The National Institute for Health and Care Excellence (NICE) recommends that all people with type 1 diabetes are offered an education programme to help them learn about insulin and manage their diabetes effectively(1).
For more than a decade (since 2000), specialist clinics at King's College Hospital and Guy's and St Thomas' NHS Foundation Trusts in the south-east of London have offered DAFNE (Dose Adjustment for Normal Eating). This week-long training course helps people learn how to count carbohydrates, inject insulin, calculate the best dose and test their blood glucose levels in order to keep themselves well, and to protect themselves against short-term and long-term complications caused by too little or too much glucose in the blood.
'We know DAFNE reduces the number of acute admissions to hospitals and diabetes emergencies, particularly severe hypoglycaemia (when blood glucose levels fall),' says Professor Stephanie Amiel who is leading the CLAHRC South London team of diabetes researchers and was involved in the original development of DAFNE. 'Research has shown DAFNE also reduces depression and anxiety, and improves people's quality of life(2),' she says.
But three-quarters of people in the south London boroughs of Lambeth and Southwark who have type 1 diabetes have not attended this course.
Data collected and analysed by King’s Health Partners as part of i3-Diabetes, a service improvement and research programme in south-east London(3), has illustrated that only 30 per cent of people with diabetes type 1 who live in these two boroughs have participated in a DAFNE course.
Further analysis of the data shows that many people who do not join a DAFNE course are from ethnic minority backgrounds, or live in socially deprived neighbourhoods(4).
The CLAHRC South London team of diabetes researchers wanted to find out why that is – and then take action to ensure more people access DAFNE.
'When we have found out why people are not coming, we will then address those reasons by reconfiguring the training offered – so for example, we could run courses at different times of day, or introduce devices that help people with the numeracy skills they need to do calculations,’ says Professor Amiel.
‘It's not about changing the principles behind DAFNE, it's about making sure we deliver the contents in a way that is accessible to everyone.
(1) Type 1 diabetes in adults: diagnosis and management, NICE guidelines 17, published August 2015.
(2) Improved biomedical and psychological outcomes one year after structured education in flexible insulin therapy for people with type 1 diabetes: the UK DAFNE experience. Hopkins D, Lawrence I, Mansell P, Thompson G, Amiel S, Campbell M, Heller S. Diabetes Care, 2012, Aug; 35(8): 1638-42.
(3) The five-year i3 diabetes programme was launched in January 2014 by King's Health Partners and pharmaceutical company Novo Nordisk. Its forerunner was the CD@KHP project, also run as a collaboration between King's Health Partners and Novo Nordisk. Both projects aim to develop cost-effective, improved services for patients who have diabetes. i3 diabetes has a database of information (created under the umbrella of CD@KHP) about more than 50,000 people with diabetes who are cared for by specialists working at hospital and community-based services run by Guy's and St Thomas' and King's College Hospital NHS Foundation Trusts, or by GP practices in the south London boroughs of Southwark and Lambeth. The database will continue to be used by the CLAHRC South London research team.
(4) Impact of ethnicity and social deprivation on uptake of structured education for type 1 diabetes in a multi-ethnic urban population. D Hopkins, R Foxcroft, D Simpson, T Evans, S Thomas, A Simonds, S Amiel. Diabetologia, 2013 Supplement.
The BUDiE Study
Adults who have type 1 diabetes who live in Lambeth and Southwark (an estimated 1,600 people) were asked to fill in a questionnaire about how they think health professionals can help them to better manage their condition, and what would make the course more appealing.
BUDiE stands for ‘Barriers to Uptake of Diabetes Education’ and is led by Dr Sophie Harris, a researcher at King’s College London and a diabetes doctor at King’s College Hospital.
The questionnaire was available online or by post. A paper version of the questionnaire was sent by post to patients who are under the care of King’s College Hospital, Guy’s Hospital or St Thomas’ Hospital, and patients were also asked to participate when they attended diabetes clinics.
In addition, she is asked a small number of patients to be interviewed, or to take part in focus groups. The interviews took place in a hospital clinic or by telephone. ‘I was particularly interested in talking to people who have not completed a self-management course,’ says Dr Harris. The focus groups comprised between three and nine people who were asked to discuss diabetes and self-management.
She also asked healthcare professionals who work within diabetes services what they think could be done to make DAFNE more accessible.
All the information Dr Harris collected is now being analysed and will be used to formulate adaptations to the DAFNE course: a pilot of the reconfigured course will be run in Lambeth and Southwark.
Results of the study have led to the development of the website www.T1resources.co.uk a one-stop shop providing rated, reviewed and reliable resources for people affected by type 1 diabetes.
The resources have been co-curated and peer-reviewed by people living with type 1 diabetes, parents and carers and healthcare professionals providing quality assurance.
As well as the T1resources website the BUDIE study has also led to the following initiatives:
- a collaboration with the Bournemouth Diabetes and Endocrine Clinic to update and extend access to an online education tool for carbohydrate counting called BERTIE;
- a new project to create patient champions to promote DAFNE to patients;
- training in structured education programmes for type 1 diabetes for integrated into specialist registrar (doctors) training in south London.