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Diabetes Education and Self-management Programmes

This PatientPlus article is written for healthcare professionals so the language may be more technical than the condition leaflets. You may find the abbreviations list helpful.

The aim of patient education is for people with diabetes to improve their knowledge, skills and confidence, enabling them to take increasing control of their own condition and integrate effective self-management into their daily lives. High-quality structured education can have a profound effect on health outcomes and can significantly improve quality of life.1

The National Institute for Health and Clinical Excellence (NICE) recommends that well-designed and well-implemented programmes are likely to be cost-effective for people with diabetes and should be offered to every person and/or their carer at and around the time of diagnosis, with annual reinforcement and review.2 A programme of structured diabetes education covering all major aspects of diabetes self-care and the reasons for it should be made available to all adults with type 1 diabetes in the months after diagnosis, and repeated according to agreed need.3

The potential benefits of an effective patient education programme for people with type 2 diabetes include:4

  • Improving knowledge, health beliefs, and lifestyle changes.
  • Improving patient outcomes, e.g. weight, haemoglobin A1c, lipid levels, smoking, and psychosocial changes such as quality of life and levels of depression.
  • Improving levels of physical activity.
  • Reducing the need for, and potentially better targeting of, medication and other items such as blood testing strips.

The National Service Framework (NSF) for diabetes and NICE's technology appraisals of diabetes education models explicitly state that all PCTs must commit to offering structured education programmes to people with type 2 diabetes from the point of diagnosis and as an ongoing part of their therapy in the long-term.5,6 However, there is evidence that not all people with type 2 diabetes are able to access structured educational input and appropriate education programmes are still not available in some parts of the country.4

There are several different programmes available across the UK, reflecting the different ways the PCTs have gone about establishing courses:

  • For type 2 diabetics there are the Diabetes Education and Self-management for Ongoing and Newly Diagnosed (DESMOND) and X-PERT programmes
  • For type 1 diabetics there are the Dose Adjustment For Normal Eating (DAFNE), Bournemouth Type 1 Intensive Education Programme (BERTIE) or insulin pump courses available, depending on area.

There is also the X-PERT INSULIN course available for type 2 diabetics on insulin for whom the DAFNE dose adjustment course may not be appropriate.

X-PERT Diabetes Programme7,8

The X-PERT Programme aims to increase knowledge, skills and confidence leading to informed decisions regarding diabetes self-management. Participation in the X-PERT Programme by adults with type 2 diabetes has been shown at 14 months to have led to improved glycaemic control, reduced total cholesterol level, improved body mass index and waist circumference, reduced requirement for diabetes medication, increased consumption of fruit and vegetables, increased enjoyment of food, and improved knowledge of diabetes, self-empowerment, self-management skills and treatment satisfaction.9

  • The X-PERT Diabetes Programme is a six-week professionally-led programme based on the theories of patient empowerment and patient activation.
  • The X-PERT course is aimed at anyone diagnosed with diabetes and it has been shown to improve long-term control of diabetes.

Contents of the X-PERT Diabetes Programme

The course contents include:

  • What is diabetes?
  • The eatwell plate and energy balance.
  • Carbohydrate awareness and glycaemic index.
  • The benefits of physical activity.
  • Supermarket tour and understanding food labels.
  • Possible complications of diabetes and their prevention.
  • Lifestyle experiment.
  • Are you an X-PERT? game.
  • Care Planning: the lifestyle experiment.

The Diabetes Education and Self-management for Ongoing and Newly Diagnosed Programme

DESMOND is a structured education programme designed for patients with type 2 diabetes, and is the first one to meet the criteria set down by NICE for suitable education programmes; it has been developed as a collaborative project between service users, workers, Diabetes UK and the Department of Health.10 A recent cost-effectiveness analysis showed the DESMOND intervention likely to be cost-effective compared with usual care for people with type 2 diabetes.11

  • DESMOND is available as a Newly Diagnosed Module (for those within the first 12 months of diagnosis) or as Foundation Modules (for those with established diabetes).10
  • It was piloted in 15 English PCTs between January and May 2004 and revised following feedback from all involved parties.
  • The course provides 6 hours of structured group education based on a formal curriculum. It is offered either as a 1-day or 2 half-day sessions of teaching, for 6-10 patients at a time.
  • Attendees may be accompanied by a person of their choice. Written material is provided to accompany the programme and allow later reference by graduates of the course. The course is delivered by two healthcare professionals trained as DESMOND educators.
  • There is an ongoing quality assurance assessment for those who teach the course.
  • The course aims to provide patients with a good foundation and practical skills to begin self-management of their diabetes. It empowers them to self-manage by providing a working understanding of their illness and through addressing issues around the initiation and sustaining of motivation.10
  • The curriculum provides the structured education under the broad topics outlined below.10

Contents of the DESMOND Programme

  • Thoughts and feelings of the participants around diabetes.
  • Understanding diabetes and glucose: what happens in the body.
  • Understanding the risk factors and complications associated with diabetes.
  • Understanding more about monitoring and medication.
  • How to take control: Food Choices, Physical Activity.
  • Planning for the future.

What evidence is there of its effectiveness?

Initial abstracts of preliminary research findings were presented at the Diabetes UK annual conference in 2005.10 The main points were as follows:

  • Illness beliefs do not match the medical model for many newly diagnosed type 2 patients, and beliefs about the impact, and the future prognosis of diabetes, are correlated with depressive symptomatology at diagnosis10
  • Pilot data indicated the DESMOND course for newly diagnosed individuals changed important illness beliefs.10 At three-month follow-up there was a reported improvement in quality of life and metabolic control.12

A larger randomised controlled trial was conducted involving 824 adult patients in 207 general practices in 13 primary care sites in the UK. The results showed that, compared with patients who did not undergo the DESMOND Programme, there were greater improvements in weight loss and smoking cessation and positive improvements in beliefs about illness but there were no differences in haemoglobin A1c levels up to 12 months after diagnosis.13

How does it work?

  • It hopes to promote understanding of type 2 diabetes, allowing patients to be more knowledgeable about what will positively benefit their long-term health as they live with the condition.
  • The course aims to dispel any myths about the condition, and any illness beliefs that are false or potentially damaging.
  • It should help patients to see their illness in a biomedical model, as well as the personal functional and social model that most use as their initial conceptual framework for understanding the impact of the illness.
  • It should enable patients to monitor their type 2 diabetes effectively, realise when their control is inadequate, and enable them to self-manage their lifestyle, nutrition and medication to bring about improvement in diabetic control, or know when to seek professional help.
  • It should enable them to be an active partner in the management of their type 2 diabetes, along with healthcare professionals.

Dose Adjustment For Normal Eating and Exercise

NICE has issued guidance on the criteria for, and form of, such education programmes, one of which is the Dose Adjustment For Normal Eating and Exercise (DAFNE) model.6

  • DAFNE is a validated, structured, reproducible diabetes education programme that aims to teach those with type 1 diabetes how to manage their insulin dosing in a flexible manner.
  • The aim of the course is to empower type 1 diabetics through understanding of their condition, hopefully enabling them to lead as normal a life as possible in terms of heterogeneity of diet, being able to exercise, and ability to cope with variability in insulin requirements caused by, for example, illness.
  • One of the catchphrases of the course illustrates this theme: 'It is not about dose adjustment for normal eating, it is dose adjustment for normal living!'
  • Another desired outcome is that type 1 diabetics will achieve better glycaemic control and avoid marked variability in their blood glucose levels by being able to tailor their long-acting and fast-acting insulin doses to their current dietary and physiological requirements.
  • The course gives a working understanding of the key areas, listed below.

Main areas covered during a DAFNE course

  • Pathophysiology of diabetes.
  • Types of diabetes.
  • Metabolic control of diabetes and its monitoring.
  • The types, actions and duration of action of insulin preparations.
  • Nutritional food groups.
  • The concepts of carbohydrate portions and the glycaemic index.
  • Adjusting short-acting insulin to the carbohydrate portions and glycaemic index of a meal.
  • Avoiding weight gain.
  • Sweeteners and sugar substitutes.
  • Alcohol, insulin and diabetes.
  • Dose adjustment for snacks.
  • A step-wise approach to insulin dose adjustment.
  • How to deal with episodes of hyperglycaemia.
  • Coping with intercurrent illness and adjusting the insulin dose when ill (using supplementary 10% and 20% of total daily insulin dose system with a ready reckoner for ease of use).
  • The origin and symptoms of hypoglycaemia.
  • Treating episodes of hypoglycaemia.
  • Adjusting insulin dose following hypoglycaemia.
  • Insulin adjustment for physical activity and exercise.
  • The purpose and content of the annual diabetic review.
  • Footcare.
  • Travelling with type 1 diabetes.
  • Driving and type 1 diabetes.
  • Pregnancy, contraception and type 1 diabetes.

The course was originally conceived and developed in Düsseldorf at the World Health Organization's co-ordinating centre under the auspices of the late Michael Berger and his team. The imbalance between UK and continental results for diabetic control and outcomes led 3 UK diabetes centres (Sheffield Teaching Hospitals, Northumbria Healthcare Trust and King's College Hospital, London) to investigate the course's usefulness and suitability for delivery in the UK. They became convinced that the principles and practice of the unit and the published evidence were sound, and that the programme would be suitable for UK patients and should be tested.

The course lasts for 5 days and is highly structured. It requires attendance each day for about 8 hours, with breaks. It is delivered via discussion and teaching of the concepts being learned in as relaxed a manner as possible, although there is a lot to get through so it is relatively busy. The course includes a lunchtime meal which is used as an opportunity to try out the concepts being learned in terms of insulin dose adjustment.

What is the evidence that it works?

  • In the late 1990s, Diabetes UK funded a trial to assess the effect of attendance at a DAFNE course on diabetic control and quality of life measures.
    • After 6 months, those who had attended the course had a fall in HbA1c of 1% compared with a control group, sustained at around 0.5% at 1 year after the course.
    • Despite an increase in the number of injections and blood tests, those attending a DAFNE course reported an improvement in their quality of life and increased satisfaction with their treatment.
    • Another important finding was that of the many areas in their lives in which they reported improvements, the largest increase was observed in the area of freedom to eat as they liked.14
  • Recent research has shown that this improvement in glycaemic control is not at the expense of more frequent episodes of hypoglycaemia; in fact, the opposite was true with those attending the course having fewer episodes.15
  • An analysis of its cost-effectiveness has shown that it is better than current standard practice and has modest effects on survival, yields significant improvements in quality of life, and would save the NHS ~£2,200 per patient enrolled, over 10 years.16
  • NICE has performed a technology appraisal on the DAFNE approach and approved it as a useful model to improve diabetes education within the implementation of the National Service Framework (NSF) for diabetes (which calls for structured education programmes for all those with diabetes).6
  • A study of patients undergoing insulin initiation as part of a structured educational programme showed that they had a better quality of life compared with patients who were on insulin but had not undergone an educational programme.17
  • One study using a single educational intervention within the normal clinical setting showed long-lasting benefits.18

How does it work?

  • Those who attend the course are taught how to assess the carbohydrate portions (CPs) and glycaemic index of the meals that they eat.
  • A handy pocket book is provided to help with this, covering a wide range of commonly eaten foods, including trademarked brands.
  • The patient's individual response to taking the recommended dose of insulin for the CPs eaten is assessed and the patient self-adjusts the amount of fast-acting insulin they take for a given quantity of CPs, and according to their preprandial capillary blood glucose. This helps to improve glycaemic control, and encourages the patient to analyse, rather than just record, their capillary blood glucose measurements.
  • The patient is given a step-wise approach on how to adjust both fast-acting and long-acting insulin where glycaemic control can be improved.

Who should go on the course, and where can they do it?

  • Essentially, all patients with type 1 diabetes. However, the trial data for its effectiveness were based upon patients with HbA1c values in the range 7.5-12% (moderate or poor control of diabetes).
  • Initially, as the programme is rolled out across the UK, it would be sensible to send patients with HbA1c values in this range, as places are still relatively limited in many locations.
  • Personal factors such as motivation, educational level, comorbidity and associated disability may influence patient selection for the course.
  • In 2006 there were 37 trained and accredited DAFNE centres in the UK. The initiative has now been rolled out so that a centre providing initial training (a hub) or a centre providing follow-up ( a spoke) is geographically accessible to virtually all UK residents.19

How do you become involved as a healthcare professional?

The DAFNE website (see 'Internet and further reading', below) has details of how to become a DAFNE centre and train as a DAFNE educator or DAFNE doctor.

Further research

The DAFNE programme is part of an ongoing collaborative research effort to assess its effectiveness and outcomes. Current areas of active research are:

  • Long-term follow-up of the DAFNE feasibility study participants, to assess how sustainable the changes observed in the initial group of patients will be in the long-term (currently being analysed).
  • DAFNE hub-and-spoke programme to enable the efficient roll-out of the availability of the course to as many diabetic patients as possible (currently being analysed).
  • DAFNE for the young, a pilot study looking at providing a DAFNE course for children aged 11-16 (the pilot study is being analysed, and funding for a randomised controlled trial is awaited).


Document references

  1. Structured Patient Education in Diabetes, Dept of Health, June 2005
  2. Type 2 diabetes - newer agents (partial update), NICE Clinical Guideline (May 2009); Type 2 diabetes - newer agents for blood glucose control in type 2 diabetes
  3. Diagnosis and management of type 1 diabetes in children, young people and adults, NICE Clinical Guideline (July 2004)
  4. Patient education programme for people with type 2 diabetes, NICE Commissioning Guide
  5. Diabetes policy and guidance including NSF, Dept of Health; Links to useful resources
  6. Diabetes (types 1 and 2) - patient education models, NICE Technology Appraisal (2003); The clinical effectiveness and cost effectiveness of patient education models for diabetes
  7. X-PERT Health
  8. NHS Diabetes; The Diabetes X-PERT Programme
  9. Deakin TA, Cade JE, Williams R, et al; Structured patient education: the diabetes X-PERT Programme makes a difference. Diabet Med. 2006 Sep;23(9):944-54. [abstract]
  10. DESMOND project; Website containing information about the project, training and programmes
  11. Gillett M, Dallosso HM, Dixon S, et al; Delivering the diabetes education and self management for ongoing and newly BMJ. 2010 Aug 20;341:c4093. doi: 10.1136/bmj.c4093. [abstract]
  12. Skinner TC, Carey ME, Cradock S, et al; Diabetes Education and Self-Management for Ongoing and Newly Diagnosed (DESMOND): process modelling of pilot study. Patient Educ Couns. 2006 Dec;64(1-3):369-77. Epub 2006 Sep 29. [abstract]
  13. Davies MJ, Heller S, Skinner TC, et al; Effectiveness of the diabetes education and self management for ongoing and newly diagnosed (DESMOND) programme for people with newly diagnosed type 2 diabetes: cluster randomised controlled trial. BMJ. 2008 Mar 1;336(7642):491-5. Epub 2008 Feb 14. [abstract]
  14. No authors listed; 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 Oct 5;325(7367):746. [abstract]
  15. Samann A, Muhlhauser I, Bender R, et al; Glycaemic control and severe hypoglycaemia following training in flexible, intensive insulin therapy to enable dietary freedom in people with type 1 diabetes: a prospective implementation study. Diabetologia. 2005 Oct;48(10):1965-70. Epub 2005 Aug 18. [abstract]
  16. Shearer A, Bagust A, Sanderson D, et al; Cost-effectiveness of flexible intensive insulin management to enable dietary freedom in people with Type 1 diabetes in the UK. Diabet Med. 2004 May;21(5):460-7. [abstract]
  17. Braun A, Samann A, Kubiak T, et al; Effects of metabolic control, patient education and initiation of insulin therapy on the quality of life of patients with type 2 diabetes mellitus. Patient Educ Couns. 2008 Jun 24;. [abstract]
  18. Lowe J, Linjawi S, Mensch M, et al; Flexible eating and flexible insulin dosing in patients with diabetes: Results of an intensive self-management course. Diabetes Res Clin Pract. 2008 Jun;80(3):439-43. Epub 2008 Mar 18. [abstract]
  19. DAFNE today; List of UK centres that are accredited to run the course

Internet and further reading

Acknowledgements

EMIS is grateful to Dr Colin Tidy for writing this article. The final copy has passed scrutiny by the independent Mentor GP reviewing team. ©EMIS 2010.
Document ID: 1593
Document Version: 25
Document Reference: bgp25278
Last Updated: 19 Oct 2010
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