DAFNE experience - the good and the bad!

[novorapidboi26]

Get a cup to tea; this is a long one…

I think there is quite a lot going on in this thread and it might help to unpick things a bit.

Firstly, here is a summary of the DCCT/EDIC study (the DCCT bit is the short term bit and the EDIC is the follow up)

http://www.ncbi.nlm.nih.gov/projects/gap/cgi-bin/GetPdf.cgi?id=phd000390

From that summary it says; “the DCCT (1983-93, mean follow-up of 6.5 years) demonstrated the beneficial effects of intensive treatment (IT), aimed at achieving glycemic levels as close to the non-diabetic range as safely possible, compared with conventional treatment (CT) on retinopathy, nephropathy, and neuropathy.”

The key thing here is close to the ‘non-diabetic range’ which in DCCT speak means below 6.0% in old HbA1c money (correct me if that’s wrong).

“Intensive treatment” meant multiple daily injections of short acting insulin with a long acting background dose; the basal/bolus we are all familiar with, there would have also been advice and support on carbohydrate counting. Note that both groups were on a diet of about 240 carbohydrates a day.

As has been stated the general reduction in HbA1c for intensive treatment didn’t get anywhere near 6.0% HbA1cs for any length of time; in fact only the very first HbA1c approached that.

The CT group maintained an average HbA1c of about 9.0% (similar to their baseline value) throughout the 3-9 (mean 6.5) years of follow-up. Those in the IT group lowered their HbA1c to about 7.0% and maintained this for the duration of the study.

However, even with those pretty poor results marked improvements in the array of diabetic complications were found; for instance the IT group reduced the adjusted mean risk for the development of retinopathy by 76 percent, as compared with CT group.

So, that is why the basal/bolus regime is pushed as a good idea for Type 1 diabetics and why the ‘support’ of the DAFNE course is given to try and replicate the support that the IT group received.

The question is then; is a basal/bolus regime with DAFNE achieving a reduction in HbA1c?

Well, possibly; about 80% of Type 1’s are getting below 10% but are they getting anywhere near the target level normal HbA1c?

From the much discussed National Diabetic Audit for 2010/11 see page 21 for Type 1’s in England (sorry Northern Ireland, Scotland and Wales):

http://www.hscic.gov.uk/catalogue/PUB06325/nati-diab-audi-10-11-care-proc-rep-V4.pdf

So, that’s a pretty emphatic ‘no’; frustratingly they don’t use 7.0% HbaA1c to make it easy to compare to the DCCT, but they do have figures for a 7.5% HbA1c – with only 28.3% of Type 1’s getting that level. And below 6.5% you have the pitiful result of only 6.9% of people getting there – those at 6.0% or below is not clear but it’s going to be small.

How, by any stretch of the imagination, can that be seen as a success for DAFNE and/or the conventional approach to managing diabetes? If you produced those sorts of below target rates in the industry I’m in you would last approximately 3 months before being fired.

But that’s not all; because notwithstanding the failure to meet the pretty bad levels achieved in the DCCT of 7.0% the target of the DCCT, as I've said, was 6.0% HbA1c - because that was felt to be the higher end of non-diabetic HbA1cs and therefore possibly achievable.

If you compare the DCCT to my own in depth ‘study’ on here :

http://www.diabetes.co.uk/forum/thr...b-diet-hba1c-poll-question.54513/#post-500565

You will see that 100% of Type 1’s got below 6.9% (about the IT DCCT result) and 54% got lower than 6.1% - the described target of the DCCT. How did they do that? Was it DAFNE? Was it Divine Intervention? Well, we all know don’t we? It was by following a low-carb diet. Not a single low-carbing Type 1 on here has stated they have an HbA1c above 6.9% - even me with my recent blip is half a percentage point below the best that the DCCT achieved.

So, DAFNE is all well and good if like Sam says a target HbA1c of about 7.0% is what you want, but if you want to get off the complications train there is only 1 alternative…

Best

Dillinger

No one, or at least not me is disputing that a low carb diet gives best results..........of course it does.........I try to follow one Monday to Friday

Doesn't mean DAFNE is unsuccessful..............it teaches you how to adjust your insulin..........not choose the best diet..........

Why do you think it is being marketed as anything else other than dose adjustment.......(Dose Adjustment For Normal Eating)...

Being able to enjoy carbs like a non diabetic is essential to quality of life...........and so when we do decide to have a treat, DAFNE can help people.......

Do you ever treat yourself...........?

 

[phoenix]

Dillinger:
Your poll was only directed at people who considered themselves to be a low carbing T1. and there were 13 responders.
I didn't vote in your poll (I don't give myself a label, others have done) I do have an HbA1c of 5.7%


. I haven't done DAFNE, I don't think that dose adjustment is the sum total of what helps me to achieve my HbA1c but I certainly wish I hadn't had to find out these techniques from the internet. I was originally stuck with a very rigid regime, fixed doses, fixed carb content, fixed meal times (and yes it works, I meet people who use it very successfully )
I don't disagree that there should also be some focus on what constitutes a healthy diet , though I suspect that we might disagree on that one. I also think that there should be somewhat greater emphasis on the third plank of diabetes control ie exercise. (they're good at that one here, they include practical exercise sessions as part of all their diabetes courses.

. One of the things we never mention is the effect that years of suboptimal levels can have.. Many, people are coming in to DAFNE type courses with many years of high levels.

Of 479 people taking courses in a variety of centres. The average duration of T1 was 17years with a 15 year range.
393 had had an episode of severe hypoglycaemia in the last 12 months
101 had had more than one such episode
63 had had an episode of DKA in the previous 12 months
45 had had more than one
After DAFNE
the figures were 99, 42, 19 and 12 (all p<0.001 )
These are figures that mean a huge difference in the day to day functioning of these people. I suspect though that those who have had high levels for many years probably have some degree of hypo unawareness, this causes many to remain scared of lower levels
Yes, I think that the HbA1c levels could be lower, though I'm not convinced that going below 7% is a good idea or indeed possible for some. I think that I mentioned earlier that there is on going research into why UK DAFNE isn't doing as well as similar courses in other parts of Europe. Maybe one reason might be that the 'food culture' that seems to have become the norm in sectors of the British population is toxic for all (!)

 

[noblehead]

There's no one answer as some might suggest, if only life was so simple.....

 

[Dillinger]

Dillinger:
Your poll was only directed at people who considered themselves to be a low carbing T1. and there were 13 responders.
I didn't vote in your poll (I don't give myself a label, others have done) I do have an HbA1c of 5.7%

Yes, I think that the HbA1c levels could be lower, though I'm not convinced that going below 7% is a good idea or indeed possible for some.

Well 'my poll' reference was implicitly and explicitly tongue in cheek and it's obviously not comparable to the DCCT but interesting nevertheless I would suggest. If you consider yourself to have a low(er) carb diet then I would consider you to be another positive answer to that question. With respect it's not about being defined by labels its about describing how we manage our diabetes.

I completely agree with you point about exercise; it is vital and is rarely mentioned in my diabetic clinics.

The issue then with DAFNE is whether it is good enough; it does some good and is clearly better than nothing but why can we not demand more? The core issue for diabetic complications is whether your HbA1c approaches normal levels or not; that is very clearly set out in the DCCT, I think the 'good enough' view of an HbA1c of 7.0% leaves so many diabetics on a direct heading for the full gamut of complications. They might get them a few years later than their brothers and sisters with HbA1cs of 9.0% but get there they will.

I think your statement that wondering whether "going below 7% is a good idea or indeed possible for some" is frankly bizarre though; if you have an HbA1c of 5.7% why shouldn't we all? I know your statement follows the view of most the HCPs I meet but again we need to ask whether that is good enough - I don't think it is. I hope it's not what you intended but it sounds like you are saying "I'm alright; and the rest of your probably can't do this anyway so I don't see why you are making a fuss about it."

Certainly it's pretty impossible to get your HbA1c much below 7% for people who eat 240 grams of carbohydrate a day (as demonstrated by the DCCT) but , of course, I would say but there is an alternative and that is a drastic as possible reduction in carbohydrate.

I want to have an HbA1c like yours and I want everyone on here to have that and indeed all diabetics to have that; but attending DAFNE courses is self evidently not the entire answer otherwise the ND Audit would look very different surely?

Regards

Dillinger

 

[Dillinger]

Being able to enjoy carbs like a non diabetic is essential to quality of life...........and so when we do decide to have a treat, DAFNE can help people.......

Do you ever treat yourself...........?

I just don't think that is true; that eating carbs is essential, neither in the strict dietary sense nor in the way you mean. The problem with 'For Normal Eating' is surely that is what has got us into the mess we are in in the first place? I think it should be called Carbohydrate Dose Adjustment; the name it has implicitly suggests that you can go ahead and have another round of sandwiches (like a 'normal' person) when that is supremely unhelpful to all diabetics.

I used to eat carbohydrates freely and adjusted my insulin to deal with that but it was like scales falling from my eyes when I started to low-carb. I went from 'good' HbA1c around 7-7.5% to 5.8% and it felt easy and healthy and intuitively right. I then stopped for a while because my GP said I was too low. I still kick myself that I listened to him because now I seem to be sitting at around 6-6.5% all the time which is OK but not what I want; and that is the issue; why should we accept 'good enough' when we could have normal blood sugars?

Regards

Dillinger

 

[phoenix]

I think your statement that wondering whether "going below 7% is a good idea or indeed possible for some" is frankly bizarre though; if you have an HbA1c of 5.7% why shouldn't we all?

I was lucky in that didn't get T1 as a younger adult or as a child. In the DCCT and elsewhere it has been shown that control tends to be a bit easier for people who develop it when older (maybe a smidgen more of our own insulin, maybe something to do with the fact we had well developed counter regulatory systems long before diabetes arrived; maybe...... ) That's why I don't think it's sensible to compare HbA1cs, I also think it can scare people away.
Add to that the problems caused by high levels over time . A lack of those counter regulatory systems so the liver doesn't kick in to 'save' people during hypos. A degree of autonomic neuropathy making digestion unpredictable. The first may make low levels unwise, the second difficult to achieve

Psychologically I would think that it is very different when you develop it later. I don't normally have to face decisions on whether to join with peers and eat something I know is not healthy. It makes it far less problematic though if you can cope with the occasional departure from 'healthy eating'. If people learned how to cope early on, then maybe there wouldn't be so many problems before people even get on a DAFNE course.
.
And just to add, whatever sort of course you have, whatever type of dietary regime you suggest a large number of people aren't going to keep it up. We had a person only the other day, Knew about carb counting , carb ratios etc but tested glucose levels only occasionally . People on these forums aren't necessarily representative.

 

[Dillinger]

@phoenix - thanks for clarifying, and I agree not everyone can normalise their blood sugars but I think they should be the exception rather than the rule; i.e. we shouldn't start by saying "you won't be able to achieve this" as that cuts out a lot of the incentive needed.

I agree the more information the better; which is why for all the frustrations and bumps and diversions on this forum I keep coming back as it is pretty much unparalleled in my experience in providing just the information that we need to aim for normal blood sugars.

Regards

Dillinger

 

[novorapidboi26]

I just don't think that is true; that eating carbs is essential, neither in the strict dietary sense nor in the way you mean. The problem with 'For Normal Eating' is surely that is what has got us into the mess we are in in the first place? I think it should be called Carbohydrate Dose Adjustment; the name it has implicitly suggests that you can go ahead and have another round of sandwiches (like a 'normal' person) when that is supremely unhelpful to all diabetics.

I used to eat carbohydrates freely and adjusted my insulin to deal with that but it was like scales falling from my eyes when I started to low-carb. I went from 'good' HbA1c around 7-7.5% to 5.8% and it felt easy and healthy and intuitively right. I then stopped for a while because my GP said I was too low. I still kick myself that I listened to him because now I seem to be sitting at around 6-6.5% all the time which is OK but not what I want; and that is the issue; why should we accept 'good enough' when we could have normal blood sugars?

Regards

Dillinger

The name of the course could be changed and may in the future, as it is constantly changing and improving......but the name in my experience hasn't given the impression you can eat when you want in whatever quantity......this is all assumption on your part.....

Again, yes low carb provides the best results but in real terms not everyone can stick to it as easily as you could/can......

Well done with HBA1C.....obviously 5.8 is better than 6.5 but is there much difference to the risk of complications.....?.....the hba1c is only a rough image of your average levels......there's a whole host of complications that are effected by fluctuating blood sugars...as opposed to average.......that's kind of veerinng topic though.....

I think accepting good or as you put it good enough blood sugars is perfectly acceptable......we could both eat the same food every day but still face different blood sugar challenges with different risks of complications....

What is your daily carb intake....?

Did you feel that you were too low as the gp suggested.....?.....what changes did you make....?

You can surely see that cutting carbs down/out isn't that easy for most despite the obvious benefits....?......hence why education such as but not limited to DAFNE is important.....

How would you deal with patients if you were responsible for advice/care....?

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[mo1905]

I think we all agree DAFNE doesn't provide miraculous results but at present, it's all we've got. Should we fight to change/modify it ? Of course. However, to say it is useless is just not true. It has lowered avg HbA1C's although could aim lower. I would guess that 95% of diabetics don't ever visit this forum and the wealth of information available so to them, it has made a huge difference. I also advocate low carb is the way forward but only because I've read of all the success on this forum. Lastly, it's not all about the HbA1C alone. It's the prevention of hypo's and spikes. A 3 month avg reading of 6 for instance may previously have involved lots of readings of 3 & 9. If any T1 diabetic asked me is it worth doing the DAFNE course I would say yes every time.

 

[noblehead]

WCertainly it's pretty impossible to get your HbA1c much below 7% for people who eat 240 grams of carbohydrate a day (as demonstrated by the DCCT) but , of course, I would say but there is an alternative and that is a drastic as possible reduction in carbohydrate.

Whilst we don't have any figures for those who achieve an Hba1c below 7% and how many carbs they consume it would be wrong to assume that those who do are all low-carbers, although I'm not quite up to that level ( I eat around 180g of carbs a day) I'm sure if I put my mind to it I could achieve similar results to what I achieve now by increasing my carb intake by another 60g a day, if not I wouldn't be too far away (not that I'm wanting to try it at the moment).

However I think if the advice from HCP's to type 1's was ''a drastic as possible reduction in carbohydrate'' as you say Dillinger then it just simply wouldn't work, the better approach would be to reduce them gradually and allow the body to adapt to the changes more slowly until good diabetes control is achieved, at what level that will be is personal to the individual and it doesn't really matter if that figure is 50g, 130g or 200g a day, there's no advantage whatsoever in lowering carbs to the bare minimum if the same results can be achieved at a higher level....would you not agree?

We have to accept that a very low-carb diet is not for everyone and for many it is impossible to achieve, if it suits then fine but why lower your carbs any more than you need to!!!

As both SamJB and I were discussing last year on another thread it would be good if there was a follow-up course to DAFNE covering important issues to do with type 1 diabetes, as well as diet and some reduction in carbs I would like to see some focus on the glycemic index, bolus timings and the importance of exercise in increasing insulin sensitivity and thus lowering insulin usage, also important is promoting a positive state of mind, instead of dwelling on what might be we should be encouraged to think more positively on what can be achieved when living with type 1 diabetes.

 

[donnellysdogs]

What do people expect fromthe NHS though? Only 4 out of 8 returned for follow up?
Sorry, to me the Public should stop wasting NHS money.
I personally think that DAFNE courses should be free providing people attend them for the whole course... If they don't charge their debit card £100.
For only 2 out of 8 getting benefit, I think that is appalling.


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[mo1905]

What do people expect fromthe NHS though? Only 4 out of 8 returned for follow up?
Sorry, to me the Public should stop wasting NHS money.
I personally think that DAFNE courses should be free providing people attend them for the whole course... If they don't charge their debit card £100.
For only 2 out of 8 getting benefit, I think that is appalling.


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Unless you were one of the 2

 

[donnellysdogs]

But 6 people? Sorry, this is our NHS and they are under enough pressures... Think those 6 people could have meant a pump to someone that really needs one....
The waste of appointments by Patients is something that I am so passionate about (i know you can tell), because there's other people waiting for these courses, there's new diabetics everyday and this is a total waste of money. Great for the 2 people, but the 4 that never returned? Will they be in bed blockage land in the long term?


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[noblehead]

What do people expect fromthe NHS though? Only 4 out of 8 returned for follow up?
Sorry, to me the Public should stop wasting NHS money.
I personally think that DAFNE courses should be free providing people attend them for the whole course... If they don't charge their debit card £100.
For only 2 out of 8 getting benefit, I think that is appalling.

I think Smidge was guessing that only 2 got some benefit from the course as there's no way of knowing as the others didn't attend, I'm sure the other 4 would have learnt something and put into practise what they learnt.

When we had the follow-up 3 people couldn't attend, 2 were self-employed and one had a round trip of 120 miles so couldn't make the long journey for the sake of an hour, however they were still DAFNE Graduates as they informed the course co-ordinator and had bloods taken by their gp a week before the follow-up.

 

[mo1905]

But 6 people? Sorry, this is our NHS and they are under enough pressures... Think those 6 people could have meant a pump to someone that really needs one....
The waste of appointments by Patients is something that I am so passionate about (i know you can tell), because there's other people waiting for these courses, there's new diabetics everyday and this is a total waste of money. Great for the 2 people, but the 4 that never returned? Will they be in bed blockage land in the long term?


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But those other 6 still completed the course, they just didn't attend the follow up for whatever reason. I agree, it's not great but who's to say they still never benefited from the course ? The follow up course is just to see how you're getting on and lasts a couple of hours. There is no more DAFNE input. As for people who miss doc/hospital appts, I totally agree. Something needs to be done about it but don't blame DAFNE for that !

 

[donnellysdogs]

I don't blame DAFNE at all, but... Human nature is that if you do well you want to go back and tell people. If you struggle putting things in to practice then you are unlikely to go back..
Perhaps a phone call to people to see how they are getting on before the follow up would help?
There is something wrong for 4/8 people to return and only 2 to have benefitted.
It would be intersting to know ages or how long diagnosis had been for people that did not attend OR find out the reasons why people went back.. Perhaps they already had complications, perhaps they want a pump etc...
Patients have to wake up to not wasting appointments with an ever growing population and the spend on patients effectively going down..
Anybody really interested in how our NHS is struggling look at the RCGP website.
I'm not an NHS employee by the way, but I am Chairperson of a GP Practice ppg and they are under huge pressure with anot enough appointments and complaints and yet our Practice has between 133-150 wasted appointments each month by Patients whilo fail to turn up.
I personally applaud DAFNE although 30 years of T1 I have never been on a course. However at some point NHS bosses will be asking what benefit are people getting from these courses-is it cost effective?


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[noblehead]

We simply don't know if it were only 2 people who benefited

 

[mo1905]

I agree with much of what you say Mr Dogs but you are still assuming only 2 of the 8 benefitted and we don't know that. We don't know their HbA1C's from before or after and to say 5 full days on a DAFNE course is of no benefit is difficult to believe. As usual, we'll agree to disagree


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[donnellysdogs]

Not disagreeing at all, just concerned that with NHS, at some point the benefit of courses will be analysed. I agree that 2 people benefitting cant be substantiated, but at some point they will have to analyse results......
Just an appeal really I guess that if any person gets appointments... Attend or cancel....and stop forfeiting or delaying other people from having them.



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[mo1905]

I attended the full 5 day course with ElyDave last Dec. Due to work commitments, I couldn't attend the follow up course either. My last HbA1C was 41 so I have definately benefitted. I thought I was quite clued up and was fortunate to have a good grasp of carb counting before I went but I knew nothing of sick day rules, ketones, alcohol etc. I totally agree it needs re-vamping and much of my success has been down to reduced carbs ( not low carb ) but I still think it is worth attending for the background knowledge which you then need to develop for yourself.


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