A programme of research to improve the management of type 1 diabetes in the UK – DAFNEplus

What do we already know about the DAFNE programme?

The publication of the DAFNE trial in 2002 in the BMJ changed clinical practice for adults with type 1 diabetes in the UK.1  The trial showed that it was possible to adapt a 5 day training course originally developed by Berger and Mühlhauser in Germany where similar courses had been a part of routine care since the 1980s.  Structured training teaching self-management skills, not only improved glycaemic control and improved many aspects of quality of life but subsequently has been shown to reduce rates of severe hypoglycaemia, diabetic ketoacidosis, and was highly cost effective.2

It is now generally accepted that everyone with type 1 diabetes should be undertaking flexible intensive insulin therapy from diagnosis, giving background insulin separately and using carbohydrate counting to calculate pre-meal boluses.  Fifteen years later, over 30,000 adults have participated in DAFNE training which is being delivered in over 70 UK and Irish centres.  Many other centres now provide structured self-management training based on principles similar to DAFNE.

 

What needs to change?

Despite the growth of DAFNE in the UK, in large areas of the country, structured training remains unavailable, often due to the failure of diabetes professionals to provide it and clinical commissioning groups to fund it.3  It is particularly alarming that the National Diabetes Audit 2012-2013 reported that only around 1% of those with newly diagnosed type 1 diabetes  had actually attended group education.4   It seems that many specialists, despite their years of training, still haven’t grasped that in type 1 diabetes the most important determinant of long-term health and ultimately quality of life, is the ability and willingness of the person with the condition to manage it themselves.  We now know that this requires high quality training, lifelong support and emerging technologies.

It seems, at least in the UK, that 1 week of structured education on its own, is insufficient to enable most people with type 1 diabetes to manage their diabetes effectively.  In a recent 5 year programme of research we confirmed that people attending DAFNE courses report major psychological benefits and falls in the risk of severe hypoglycaemia but that improved blood glucose levels were rarely sustained.5 A series of qualitative studies led by Julia Lawton and colleagues from Edinburgh reported that participants found it tough to maintain self-management behaviours necessary to lower their glucose to levels which would prevent diabetic complications.6,7  Many struggled to continue to check blood glucose, count carbohydrates and then calculate the right dose of bolus insulin before every meal.   Following the course, people were also reluctant or unable to obtain support from the nurse and dietitian educators and doctors in answering questions and helping them to maintain successful self-management.

 

How will the DAFNEplus project help?

We have recently been funded by NIHR to undertake further research in which DAFNE graduates, psychologists, and diabetes teams will work together to develop a more effective course.   In the DAFNEplus project, we will learn from and build upon our previous work.  We aim to incorporate new theories of behaviour change into the DAFNE curriculum to incorporate the tasks of managing diabetes, into peoples’ everyday lives. We will also improve the support that health professionals provide after the courses, helped by emerging technologies.

We then aim to run a trial to evaluate the new course and professional support.  In a cluster randomised trial we will compare over 1 year, the results of around 300 people trying the new course with 300 who undertake the current existing standard course.  Thus, we aim to offer structured training to enable diabetes self-management within a lifelong package rather than as a stand-alone, 5-day course. The results of this work may also help to develop more effective skills training in other age groups (especially children and young people).

 

What have we been up to so far?

We started work at the beginning of March and even within the first few weeks it has been really exciting to feel the energy and enthusiasm already being generated by people with diabetes and professionals from a range of different disciplines.  Our timetable is tight, as we have to have all the elements in place by the spring of 2018 if we are going to test DAFNEplus in a full trial from September of that year.  But the prize is great and our team are very determined.

 

What can you expect to see on our blog?

Over the next few years we hope different members of our group (both patients and professionals) will be reporting their experiences both positive and negative as we try and bring this research project to a successful conclusion.   We won’t be able to describe the results in detail as we go along, as this would prevent us publishing them in medical journals.   But we do hope to communicate the excitement (and frustrations) of undertaking a research project which may change practice and improve the health and quality of life for people with type 1 diabetes.

 

Simon Heller, Professor of Clinical Diabetes, University of Sheffield and Hon Consultant Physician, Sheffield Teaching Hospitals Foundation Trust.

s.heller@sheffield.ac.uk

 

* This blog is based on a recent editorial in Diabetes Update. This can be accessed in full here:

 

References

  1. DAFNE Study Group: Training in flexible, intensive insulin management to enable dietary freedom in people with type 1 diabetes: dose adjustment for normal eating (DAFNE) randomised controlled trial. BMJ 2002;325:746–751.
  2. Elliott J, Jacques RM, Kruger J, Campbell MJ, Amiel SA, Mansell P, Speight J, Brennan A, Heller SR: Substantial reductions in the number of diabetic ketoacidosis and severe hypoglycaemia episodes requiring emergency treatment lead to reduced costs after structured education in adults with Type 1 diabetes. Diabet Med 2014;31:847–853.
  1. All-Party Parliamentary Group for Diabetes (2015). ‘Taking control: supporting people to self-manage their diabetes’. Available at: http://www.diabetes.org.uk/Get_involved/Campaigning/Our-work-in-Parliament/ (accessed on 18 February 2016)
  1. Health and Social Care Information Centre (2014). National Diabetes Audit 2012–2013 Report 1: care processes and treatment targets. Health and Social Care Information Centre website. Available at: http://www.hscic.gov.uk/catalogue/PUB14970 (accessed on 18 February 2016)
  1. Heller S, Lawton J, Amiel S, Cooke D, Mansell P, Brennan A, Elliott J, Boote J, Emery C, Baird W, Basarir H, Beveridge S, Bond R, Campbell M, Chater T, Choudhary P, Clark M, de Zoysa N, Dixon S, Gianfrancesco C, Hopkins D, Jacques R, Kruger J, Moore S, Oliver L, Peasgood T, Rankin D, Roberts S, Rogers H, Taylor C, Thokala P, Thompson G, Ward C: Improving management of type 1 diabetes in the UK: the Dose Adjustment For Normal Eating (DAFNE) programme as a research test-bed.; Improving management of type 1 diabetes in the UK: the Dose Adjustment For Normal Eating (DAFNE) programme as a research test-bed. A mixed-method analysis of the barriers to and facilitators of successful diabetes self-management, a health economic analysis, a cluster randomised controlled trial of different models of delivery of an educational intervention and the potential of insulin pumps and additional educator input to improve outcomes. NIHR Journals Library, Southampton, 2014
  1. Rankin D, Cooke D, Elliott J, Heller SR, Lawton J and the UK NIHR DAFNE DAFNE Study Group: Supporting self-management after attending a structured education programme: a qualitative longitudinal investigation of type 1 diabetes patients’ experiences and views. BMC Public Health 2012;12:652.
  2. Lawton J, Rankin D, Cooke D, Elliott J, Amiel S, Heller SR for the UK NIHR DAFNE Study Group: Patients’ experiences of adjusting insulin doses when implementing flexible intensive insulin therapy: A longitudinal, qualitative investigation. Diabetes Research and Clinical Practice 2012;98(2):236-242.
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