DAFNE experience - the good and the bad!

[mrman]

Well its not dafne who follows people around 24\7 to ensure basal checks are done correctly/routinely, regularly monitor levels to spot patterns/trends, adjust diet/insulin to suit diet preferences/activity. we all know it takes alot of effort/willpower constantly every day.

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[mo1905]

Sam, Just out of interest, the results that show DAFNE graduates still have relatively high HbA1C's, are they better than before they attended ? What I mean is, say the post DAFNE results avg 7's & 8's, could they have been 9's & 10's before ? Are those stats available or not ? I agree DAFNE needs updating but I still believe it's better than nothing. Most people I know who have attended have got something out of it. It never promised miraculous results and I can only speak for my course, it never advised high carbs, just "normal" eating, which is different for us all.

 

[phoenix]

If you want to measure success, by "slight improvement in BGs, but you'll probably get complications" then fine, fill your boots with DAFNE. I'd measure success as "risk of complications at unity with the non-diabetic population",

This is a very cynical interpretation.
Have you looked at the Joslin medallist data?
It is worth remembering that these people developed diabetes before strict control was possible and when it wasn't considered to be necessary These people will have had diabetes for a minimum of 36 yeas pre DCCT (1993)
The average longitudinal HbA1c (1993 onwards ) was 7.7% and in this population they have found no significant relationship between HbA1c and complications. These are, of course the survivors, it may be different for those that didn't survive

.However, all the evidence (and the only long term stuff is DCCT EDIC) seems to show that a reduction below 7-7.5% hasn't been shown to confer greatly increased benefit. Indeed in the DCCT less than 5% of the cohort were able to get an HbA1c below 6.5%. but they still hade a massive risk reduction.

One big thing though was that the benefits of tighter control was best when implemented early after diabetes diagnosis.. From what I see on here there are lots of people who have to wait a very long time to be offered a DAFNE course.

 

[mo1905]

I wish I could understand that !


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[SamJB]

Sam, Just out of interest, the results that show DAFNE graduates still have relatively high HbA1C's, are they better than before they attended ? What I mean is, say the post DAFNE results avg 7's & 8's, could they have been 9's & 10's before ? Are those stats available or not ? I agree DAFNE needs updating but I still believe it's better than nothing. Most people I know who have attended have got something out of it. It never promised miraculous results and I can only speak for my course, it never advised high carbs, just "normal" eating, which is different for us all.

Yes, they show a decrease in HbA1c of around 1.5%. I agree, DAFNE is better than nothing and I'm pleased people feel that it improves their control.

My point is, that DAFNE/carb counting is sold by the DAFNE people and by Diabetes UK as an effective way of controlling Type 1. When all the evidence that they present shows a complete, unambiguous, undeniable lack of efficacy.

Phoenix, how is expecting efficacy from a structured education programme cynical? It's completely justified. One of the references in the DAFNE blurb states that DAFNE taken immediately after diagnosis is better than taking it later. Oh and that 1993 study has got survivor bias written all over it.

Why is it so outrageous to expect a proper structured education programme to deliver efficacy, when that is how it is marketed? I think it's outrageous to expect otherwise.

 

[mo1905]

1.5% is quite significant and can hardly be deemed a failure. I totally agree the dietary advice needs overhauling but apart from that, it appears to be successful ?


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[phoenix]

Sorry you didn't understand what I said. It was an answer to the previous post from Sam (and I know he reads the literature)
However, I'm sure that you can laugh about it elsewhere.

 

[mo1905]

Sorry you didn't understand what I said. It was an answer to the previous post from Sam (and I know he reads the literature)
However, I'm sure that you can laugh about it elsewhere.

No need to apologise for my ignorance Why would I laugh about it elsewhere ? I wish I could understand it


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[paul-1976]

However, I'm sure that you can laugh about it elsewhere.

Who is that aimed at?

 

[mrman]

Surely though, to get the intended results from the course is down to the individual. the tools are given by the course. The dafne course I attended focused more on basal, and adjusting for illness, excercise and treating hypos. Dietry advise was minimal but, there is no diet they can recommend on a large scale to suit everyone. Carb quantities I can't recollect being advised, neither high, normal or low. Has been and always will be an individual (and contentious) subject.

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[SamJB]

1.5% is quite significant and can hardly be deemed a failure. I totally agree the dietary advice needs overhauling but apart from that, it appears to be successful ?


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I agree Mo, a drop of 1.5% is great, but when it still gives the individual a high risk of complications, it's difficult to say its successful. My aim as a diabetic, as is your's, I'm sure, is to avoid complications.

I'm not against an education programme at all, I just want one that delivers good results and DAFNE doesn't.

Brett, absolutely it's down to the individual. Is it fair to blame all the individuals for not achieving efficacy after DAFNE, or do we blame DAFNE? I would bet there are thousands of people who want an HbA1c under 6.5% and can't with DAFNE/carb counting. I should know, because I was one of them.

 

[mrman]

Hoping to be in that 6.5% and less club next time myself, must be due a hba1c soon, 6.7 last year, though, from my own results I'm sure it would be. Personally for me im quite happy under 7.5. should it start to rise above that, with testing and adjusting insulin failing, I would look at my diet, (maybe reduce carbs) but, still using the dafne principles.

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[mo1905]

You're a far wiser man than myself Sam and I always respect your posts but I still think that an avg reduction in HbA1C's of 1.5% would surely lower risk of complications ? Agreed, still room for improvement but instead of slating DAFNE shouldn't we push to get it tweaked a bit ?

 

[smidge]

That's because the idea is to Adjust your insulin Dose to Normally Eat rather than to adjust your diet - it's in the even in the acronym; and you are free to apply the DAFNE techniques to whatever you want to eat.

Your criticism is about as intelligent as saying evolution is and because it doesn't explain the Big Bang. If indeed there was ever any evidence to conclusively show that your low carb ideas are correct than DAFNE graduates could easily apply what they have learned to eat a low carb diet so it sounds like you've completely missed the point of the course in your low carb rage.


If you are worried, you could try looking at the studies that found DAFNE to be effective rather than just making up excuses to ignore reality when it doesn't match your preconceived ideas... Unless you are saying that patients are lying about their hba1c in the treatment group.

I'm normally polite to people, but AlexBrennan you are an idiot!

Smidge

 

[smidge]

I have to say, that even though I was really disappointed with the DAFNE course and after my experience with it didn't believe it would get people to safe levels, I did hope that it might improve the control of most of the participants. Sadly, it didn't. Just two out of eight. For me, that's really not good enough.

Smidge

 

[SamJB]

You're a far wiser man than myself Sam and I always respect your posts but I still think that an avg reduction in HbA1C's of 1.5% would surely lower risk of complications ? Agreed, still room for improvement but instead of slating DAFNE shouldn't we push to get it tweaked a bit ?

Absolutely, a drop of 1.5% is great and absolutely there will be a drop in complication risk. But from the studies quoted in DAFNE, most can still expect to have a high risk of complications once they've completed DAFNE. That's not what anyone wants, surely?

 

[mo1905]

I have to say, that even though I was really disappointed with the DAFNE course and after my experience with it didn't believe it would get people to safe levels, I did hope that it might improve the control of most of the participants. Sadly, it didn't. Just two out of eight. For me, that's really not good enough.

Smidge

Certainly could be better but that's 25% success Smidge ! I know it's an estimate but if a quarter of all diabetics lowered their HbA1C's this can't be a bad thing surely ? I'm not suggesting DAFNE is great, I found much of it a struggle but I certainly benefited from it. I've said numerous times it needs updating but there's not much opportunity for education out there at present so would be a real shame to lose it.

 

[noblehead]

The DAFNE course should not only be measured by the improvements in Hba1c but also the quality of life that it gives, it's well known to improve overall bg control thus reducing hypo's and hyper's and also leads to a reduction in insulin usage, those that do attend say that they feel less anxious about living with diabetes and so see an improvement in their general well-being.

When I did my course all seen improvements in their Hba1c and everyday control, one chap was having hypo's everyday and was injecting something like 66 units of basal insulin, by the end of the course and the 6 week follow-up he was down to 40 units and experiencing very few hypo's, his journey always stood out to me as one reason why DAFNE is so worth while..

At the end of the day the course itself is foundation stone in which to build on, DAFNE alone will never resolve everything and most of the hard work has to be done by the individual, the many 100's of positive posts about the DAFNE course on this and other forums speaks volumes about the course itself.

 

[Dillinger]

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

 

[novorapidboi26]

Sam, how do you control your diabetes?

That's not including low carbing, as that is a logical way to make control easier......

Did you attend some other educational program that taught something else?

For a lot of people, cutting the carbs down all the time would impact negatively on their quality of life.........its OK to have a whole pizza as a treat from time to time.........DAFNE gives you the ability to cater for such carbs, by initially carb counting, timing, split doses etc....

what injectable regime out there gives the best long term results......?