DAFNE (and other Structured courses) – Dose Adjustment for Normal Eating, but maybe not normal life…

DAFNE (and other Structured courses) – Dose Adjustment for Normal Eating, but maybe not normal life…
DAFNE (and other Structured courses) – Dose Adjustment for Normal Eating, but maybe not normal life…

Following some discussions on the DCUK forum relating to DAFNE, I thought it would be an interesting topic to look into. Before I go on, I must state that I have never undertaken the DAFNE course, although I completed the Bournemouth BDEC course on-line, some ten years ago, and when diagnosed 27 years ago, carb counting was the normal way to manage diabetes, so this focuses on results of RCT trials and perceptions.

The DAFNE course is a widely used structured education course for Type 1 diabetics. DAFNE stands, of course, for Dose Adjustment for Normal Eating and was derived from work that grew, under Michael Berger, out of Dusseldorf University. It has shown successful patient outcomes in reducing Hba1C levels and done so under RCTs so can be considered to be an effective tool for patients in dealing with T1.

By the 2nd November 2015, 36,699 people had “graduated” from the DAFNE course, which is delivered in approximately 145 localities. Statistics for other DAFNE-like courses are not widely available and are done on a CCG by CCG basis. It’s fair to estimate that the number of people with some form of structured education under their belts is therefore significantly greater than the number that has completed DAFNE, but with the recent NICE and global guidelines recommending an Hba1C of less than 6.5%, is “normal eating” really that manageable for most T1s, or is the name DAFNE and the idea behind it setting us up for failure on the 48mmol/mol target?

The question here is with regard to the description – “Normal Eating”. Every long term Type 1 has experienced the myriad ups and downs that come with the condition. Non-repeated highs, sudden accidental lows, and an Hba1C that seems less reliably indicated by blood glucose recording than one might expect. I’ve somehow, in the last 27 years, managed to stay mostly around the 7% level, and in the last couple, drop that down to the 40mmol/mol level (5.8% in the old money).

DAFNE’s efficacy is not in doubt, and the statistics speak for themselves. But the published data leads to some interesting questions. So lets start there, with the UK RCT that was undertaken.

Key points about the UK DAFNE RCT:

  • Starting Hba1C of participants was 7.5% to 12% – not what is considered well controlled by most in the medical world
  • The initial “average” Hba1C of the participants was 9.4% (which roughly equates to an average blood glucose level of 12.4%)
  • The 6 month post-RCT average Hba1C was 8.4% (which roughly equates to a blood glucose level of 10.8%)
  • The average Hba1C reduction observed amongst participants was 1%, which is considered clinically significant
  • Wellbeing measures had increased – patients felt more able to deal with food presented to them and felt they had a better quality of life
  • Weight, had on average, increased by 1.2% and Cholesterol level changes were statistically insignificant
  • Perceived incidence of hyperglycaemia had dropped by about 19% while perceived incindence of hypoglycaemia had increased by 6%
These are clear benefits amongst those who had long term difficulties with managing Diabetes, and the follow ups show that there was sustained improvement amongst those who participated. 
Anecdotal feedback from those that have been on the courses shows that many find the introduction of a structured method that systematically allows a patient to work out how to adjust their insulin levels for both normal, every day things and when ill clearly has huge benefits for them. 
There is no argument from me that providing a structured, systematic way to manage your condition is a good thing. It provides a mechanism to form a habit that can then be repeated with less thought. 
But lets take this data in association with the National Diabetes Audit, the last full data set for which is 2011-2012.
The key points that jump out here are summarised nicely in the below image, taken from the Summary of Findings document:
Probably the most disturbing point within this is that only 7% of Type 1s throughout the UK (and bear in mind there are 270,000 roughly, so 18,900 of them) have Hba1Cs below 6.5%. This is roughly equivalent to an average blood glucose of 7.7 mmol/l.
Only 27% have an Hba1C below 58 mmol/l, or 7.5%, an average of 9.4 mmol/l.
Why is 6.5% a significant figure. Research has shown that the risk of complications is significantly reduced if blood glucose levels are kept below 7.7 mmol/l. The DCCT and EDIC long term studies show that close to normal Hba1Cs reduce the risk of complications, as per the graph below:

The full details of this are available in many of the DCCT/EDIC documents, an example of which is the 30th Anniversary Booklet

Of course, we can’t forget the legendary, and sometimes controversial, Dr Richard Bernstein when talking about complications either, who reversed his own and maintains that you should never spike your blood glucose above 6.8mmol/l and eat no more than 30g of carbs per day. 
All of these recommend that glucose levels are kept extremely low to avoid later in life complicatons.
But how does this all tie back to DAFNE? In my view, it’s all in a name.
The name suggests that you will be able to undertake “Normal Eating”. All of the evidence shows that in the UK at least, there are something in the region of a quarter of a million Type 1 diabetics that have a significant risk of suffering complications due to blood glucose levels, and that while educating them about how to live a “Normal Life” and eat “Normally” may be great, educating them that maintaining blood glucose levels at near normal levels is just as important, for both their health and the NHS budget. Unfortunately for many, eating normally means including biscuits with a cup of tea, cake and lots of other things that can be problematic for a T1D.
Clearly DAFNE provides a strong structure, but I question whether it also sends the wrong message. Managing diabetes is hard and timing insulin to avoid blood glucose spikes is even harder. Maybe T1Ds shouldn’t be eating normally. Eating normally makes it extremely difficult to manage blood glucose levels effectively (an example of a one off comparison is here at Diatribe, and my experience, plus that of many others, reflects this too). Given the wealth of evidence that post-meal spikes also play a part in damaging complications, is eating normally something that T1Ds should do on occasion, and not under everyday circumstances?

Should the DAFNE course be renamed to reflect that it is really about Managing Diabetes Everyday (MADIE) rather than really about “Normal Eating”?  Should all of these courses make it clearer that the average glucose levels really matter a lot from a very early stage? Should they introduce the idea of eating fewer carbs to manage the spikes more safely and show, via CGM, how timing is critical in insulin dosing? Should the impact of protein and fat on bs management be given a higher level of awareness in the discussions?

One thing I am certain about, after 27 years, is that if I was to undertake “Normal Eating” all the time, there is no way I would achieve the 48mmol/mol Hba1C target without a huge number of hypoglycaemic episodes. The NHS definition of normal eating is between 33% and 66% carbs, or 165g-330g of carbs per day. I used to undertake normal eating and that gave me an Hba1C of around 7%, still too high. As it stands, on a diet which is much lower in carbs than normal, I achieve an Hba1C of 40 mmol/mol and a standard deviation of 2.0 on an average glucose level of 6.6, so <30% of my average, which is where it needs to be.

Taking a look back at the evidence presented, we see that the NDA shows that 93% of T1s exceed the new best practice Hba1C and are therefore at risk of complications. We know that there has been little long term follow-up (more than 12 months) following the RCT on DAFNE interventions. We can see that DAFNE in the near to mid-term has a positive effect.

Does it allow the DAFNE graduate to live a normal life? Maybe. Can they eat a normal diet? If they choose. How long will their normal life remain so? No that long, given the NDA data. Fundamentally, alongside the structured education about managing their condition, a clear and concise message is needed about the risks of high blood glucose and where they lie. Without this, I believe any diabetic education is only doing half its job.

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