Aaand relax! Thoughts on the REPOSE trial

I've been watching Twitter with some interest today, following a conversation about a recent piece of research published by top-notch diabetes Doc, Sheffield's Dr Simon Heller.

I first heard of the REPOSE study (Relative Effectiveness of Pumps Over MDI and Structured Education) in 2016 when I was able to sneak into the Diabetes UK Professional Conference, where Dr Heller published some of the early findings. It has now been formally reviewed and published in full and, as much as I am able to understand it, I find it fascinating reading.

If you are interested, you can read the study here: http://www.bmj.com/content/356/bmj.j1285

The intention of the study was to evaluate whether insulin pumps or multiple daily injections (MDI) gave the better outcomes for people living with type 1 diabetes who have received comparable training and support. Essentially they took over 300 people, spread across multiple centres almost all of whom had HbA1c results over 7.5% and offered them structured education/training in intensive insulin therapy. Of those that undertook the training (267) the study then followed 260 people over 2 years to see what changed. Of the study group, the pump vs MDI split was approx 50:50.

What did it show?
Here are some of the results that caught my eye...

• Supporting people with effective, detailed structured-education/learning/training* in the complexities of managing type 1 diabetes improves outcomes whatever method people use to deliver their insulin (* delete the phrase/s which annoy you the most)
• On average people do a little better on insulin pumps (-0.85% with pump treatment and -0.42% for MDI)
• When results are adjusted for differences which could have skewed the data, the pump 'win' was pretty modest at around an extra -0.25% (-2.7 mmol/mol) reduction in A1c for pump users vs the MDI group - the averages may, of course, hide significant individual variation
• Pump users additionally scored better for 'quality of life' and 'treatment satisfaction'

What I find interesting, reading between the lines, is that this study almost exactly replicates my own meandering journey towards insulin pump therapy. This whole blogging endeavour sprang out of a non-Wittertainment related 'unfortunate event' which acted as a catalyst for me to re-assess my own relationship with type 1. Chiefly that reassessment was that I was nothing like as good at dealing with it as I was allowing myself to think. I then went through a period of significant re-education, not by attending a formal course, but by my own experiments and learning from others living with T1D, many of whom were using updated intensive-insulin-therapy-type approaches. After much work, and many successes (including a reduction in A1c and elimination of severe hypoglycaemia) I realised that I had reached the limit of my MDI skills, and if I wanted to improve further - which in my case meant more or less maintaining HbA1c, but further reducing mild hypoglycaemia and glucose variability, then the next step for me was an insulin pump.

The small irony is that I had been offered an insulin pump repeatedly for going on 5 years at that time, but had never liked the idea. In fact, looking back, I think if I'd accepted a pump in the years before we started writing this blog, and before I had discovered the #doc - I am really not sure whether it would have done anything much for me. Or whether I would have just have tried it for a bit and then stopped using it out of frustration.

No magic bullet
One of my take-aways from the REPOSE trial is that insulin pumps (or any other diabetes technology for that matter) are never going to entirely 'fix' things. This was certainly one of the things that put me off pump therapy for years. If many of my errant results were down to 'user-errors' of judgement, I reasoned, what difference could it make whether that 2u, 3u, 4u dose was delivered by syringe, insulin pen or pump/cannula. It's pretty obvious really - or at least it should be - but a lot of the potential power and effectiveness of insulin pump therapy comes down to the way an individual thinks about their diabetes management. The techniques they use, the strategies they have been given to review and adjust on an ongoing basis. I attended a pump users event when I had only been using Artoo for a few months and was slightly shocked to meet people who had been using insulin pumps for years but had never used (or wanted to use) the combo/dual/square/extended bolus options. It may be that they didn't need to, or that they had never been shown how to. But the lack of curiosity was a genuine surprise.

Not for everyone, and not second best
It is all too easy inside the hothouse of the 'Twitter bubble' to let yourself believe that absolutely everyone is using an insulin pump, full time CGM, Nightscout, and open-source cloud-based Artificial Pancreas algorithm. If you understand even half of that sentence, you will know exactly what I mean. But the simple truth of REPOSE is that insulin pumps are just one option, and they will suit a particular type of person, with a particular set of approaches at a particular time in their lives. That doesn't inherently make them better or worse, and it certainly doesn't make them right for everyone all the time. I loved this post by everyone's second favourite ex-teacher-Libre-wearing-cat-loving-warm-ball-of-GBDOC-loveliness Adrian Long about his continued love of multiple daily injections. People can do brilliantly on MDI, and people can do brilliantly on insulin pumps. What matters most is the support and information/training they have been given. Diabetes is going to be infuriating, uncooperative and apparently willfully disobedient whichever insulin delivery method people use. What I need, in order to face those daily frustrations is a comprehensive set of strategies, and individually tailored personalised goals to make small incremental improvements towards better outcomes. In addition a good deal of understanding and moral/psychological support goes a long way to help.

The shiny gadget effect, sticks and carrots
I do find myself wondering about the possible catalytical nature of a new piece of diabetes technology. For some people, and I think I might be one, having a shiny new diabetes toy (or the promise of one) can re-energise them into a new, more active relationship with their diabetes management. It may also be that people who have never really fancied attending Structured Education, for a whole host of reasons, may decide to take the plunge in order to get access to the technology they are hoping will help.

I'm not altogether sure how I feel about this if I am honest.

I would hope that REPOSE leads to more individualised, supportive care, rather than people being forced to unnecessarily attend officially endorsed education courses purely to box-tick the process (and add delay into the bargain). My own journey towards pump therapy was excellent in that regard. In the pre-pump assessment I was offered the education, but in conversation it was decided that I was already using exactly the techniques and strategies that the course advocated, so that it was entirely up to me whether I thought it would be beneficial or not. I would not want people who might excel at pump therapy to be put off by a hardline education requirement... but at the same time, my own experience tells me that often you don't know what you don't know. And that many people who attend diabetes education expecting very little from it actually leave the course with their relationship with their own diabetes utterly transformed.

Worries
My slight worry in all this, is not what this study actually shows, but more how it might potentially be interpreted and skim-read - short version: pumps expensive and not much better. The current guidance over the use of insulin pumps (and when people may additionally benefit from CGM) is pretty clear cut. And yet, some people in some places find themselves having to jump through interminable hoops, or simply get enquiries brushed off for having 'too good an HbA1c'.

Insulin pump therapy really does work well for some people, but it is expensive and the 'working well' does not come automatically. What I hope comes out of all this is a greater level of support and assistance both for pump users and MDI whizzes to aim for those elusive  and aspirational treatment targets alongside a decent quality of life and an avoidance of diabetes burnout. With finite NHS resources it is only right that these therapies are used effectively, and clearly a vital component of that is the support, education and encouragement that people receive, not just initially, but on an on-going basis.

Simply blindly chucking technology at T1 is never going to work.

I'd be interested in your thoughts on this trial, and how you think it might impact you in your journey with diabetes. Please do leave a comment below.

Edinburgh, encouragement and a call to arms

This week I have been lucky enough to be invited to speak at the 55th St Andrew's Day Symposium, hosted by the Royal College of Physicians in Edinburgh. I was given the topic of 'apps and technology' in relation to managing a long-term condition like diabetes, but obviously - not content with that - I managed to sprinkle in a wafer-thin analogy of what living with type 1 is like, along with all sorts of stuff about the #doc and the transformative potential of online peer support communities.

I tried to cover the infuriatingly fickle nature of type 1 diabetes, mentioned a few 'old favourites' like mySugr and the Accu-Chek Expert which have helped me attempt to tame my own 'diabetes monster' and also just a few of the many other things that I know help others in different ways. Gathering data and then learning to be able to apply it to make small improvements. Not forgetting, of course, the support you can get from those facing the same battles every day, whether in terms of just keeping going when it all falls to pieces (again!), or in people sharing experiences and strategies that work for them that you can consider for your own self-management.

It seemed to go relatively well, and people were very encouraging - but the absolute stand-out for me about the whole experience were the conversations I had with some passionate diabetologists after the session had ended. I had deliberately avoided focussing too much attention on the more obvious technological advances like pumps and CGM, as I had wanted the talk to have as wide a reach as possible, and also perhaps fire the imaginations of clinicians working in other disciplines as to how they might make use of similar apps/peer support resources in their own specialism.

Speaking to those diabetes specialists afterwards was something of a call to arms. Much money is being spent on healthcare in the UK which does *not* have the ongoing quality of life benefit for individuals that sensor augmented pump therapy offers - let alone the extension of life for pump users as shown in recent research. The case was made to me that it is time the diabetes online community stopped being so darned understanding about the lack of funding for sensor-augmented pump therapy. The time for accepting defeat has passed, and as more and more data are made available from increasingly positive trials, we need to start banging the table if we are ever to move pump/CGM into the mainstream in the UK.

I got the distinct feeling that there are many clinicians who feel strongly that this is the way forward for type 1 care, but that patient voices as part of that change are crucial. Certainly the impact of patient support in Scotland's wider adoption of pump therapy in recent years sets an encouraging precedent.

Yes I *know* we go on about it all the time among ourselves (often with a resigned sigh and bit of self-funding) - but perhaps the moment has come to really start ramping up the pressure.

Disclaimer. My travel, and accommodation was paid for, but I was not paid to prepare or deliver my talk. I was also invited to attend a swanky dinner at the end of the Symposium which was lovely.

Unusual suspects : age at diagnosis

A short while ago I was musing about one of the questions which form part of the scope of my little side project. It got me thinking, and in order to have a slim chance of having something to say when the subject eventually comes up for discussion I began to wonder just how old people generally are when they are diagnosed with various types of diabetes.

In the old days, of course, things were much more straightforward - even the conditions themselves were referred in terms of 'juvenile' and 'maturity' onset. But I'm forever coming across folks in forums who were diagnosed with 'type 1' (which is typically thought of as a condition that develops in childhood) well into their autumn years.

There was an obvious answer to satisfy my curiosity - just ask you lot. So I decided to conduct a quick straw poll and asked around the good people of the DOC for their age at diagnosis. Now of course this was not carried out with much, if any scientific rigour - but I find the results fascinating nonetheless.

First off I was absolutely humbled and amazed as ever by people's generosity of spirit in the DOC. Within hours of tweeting, "I'm just curious..." I'd been inundated by responses from people who had never heard of me before and my little tweet was bouncing all over the twitosphere with RT after RT. Facebookers and forum peeps waded in and before you could say, "well I wasn't expecting that" I had over 220 responses. Two hundred. And twenty. Many of the 'proper' research projects I see and read have sample populations in the 10s. People even continued to respond for a short while after I'd gathered the results in from the various places.

While I recognise that I was asking a particularly skewed demographic, I found it interesting that after logging 70 or 80 anonymised responses into a spreadsheet the proportions of people in the different age groups remained almost entirely unchanged right up until that 221st person chipped in. So while I completely accept the limitations of the survey I do wonder whether it isn't that far off the real picture.

So what did I discover?
The first and perhaps most surprising thing I discovered was that members of the DOC are much more likely to be type 1. I'm not absolutely sure why this is - perhaps because the management of type 2 is often downplayed by healthcare professionals and people are (mistakenly) led to believe that type 2 is somehow 'less serious'. People with type 1 it seems are more likely to feel like they are struggling and to seek help and support online. So while in the UK population type 1's make up only 10% of diabetics, in my survey they represent 72% of responses!

Oldest and youngest
Of the type 1's the age at diagnosis ranged from just a few months old right up to 66. Type 2's were similarly stereotype-defying ranging from 17 up to 66 again. The average age for diagnosis with type 1 was 18, while the average age for type 2 diagnosis was 45. I didn't specifically ask the question, but at least a dozen people volunteered the information that they had first been diagnosed as type 2 and later reclassified as type 1 or LADA. The average age for the first diagnosis in this group was 35. It would seem that if you are diagnosed with diabetes in your 30s then you stand the highest chance of your Dr putting a tick in the wrong box, and if the treatment you are receiving isn't working despite your best efforts it might be worth asking for some more tests!

Just the facts ma'am
For those who fancy poring over the numbers/proportions for themselves here are the basic analysis tables that Excel squirted out:

	Type 1	Type 2	Total
Number	158	63	221
Average Dx Age	18	45
Dx uncertainty/change	12
Avg Age at initial Dx if changed	35
By age group	Type 1	Type 2	T1 %	T2 %
<= 17	90	0	57%	0%
18-34	47	7	30%	15%
35-44	14	24	9%	38%
45-64	5	29	3%	38%
65+	2	3	1%	5%

So while, as you might expect, over 50% of T1s are diagnosed by the age of 18, almost half of them aren't. Coupled with which the number of people diagnosed with type 2 in their 20s - early 30s is a pretty meagre 15%, with the several of those being later reclassified). One T1 respondent mentioned that at 18 they were told they were 'too old' to be type 1. For another this happened in their mid-20s.

It would seem that getting diagnosed at an unusual age is, well... er... not that unusual.

The amazing amazing DOC

As 2010 draws to a close I find myself looking back over the last 12 months and in particular the changes to my experience of diabetes. Emotionally sensitive readers, or those who find gushing saccharine-sweet outpourings a little cloying may want to look away now.

As the year began I was just doing what I always did to keep my diabetes under control. It worked, more or less, most of the time. There were a few too many highs, a few too many lows, the constant contradictory feeling that things could be better and that things were as good as could be expected while retaining any semblance of a normal life. I think this feeling plagues many who live with diabetes. The suspicion that if you had more self control or were willing to give up treats/flexibility/various major food groups and could commit to live an identical gram-perfect life every day your control would finally be sorted. Except that you can't. And let's face it even if you did you'd be pretty miserable, or at the very least pretty difficult to be around.

So I pottered along happily enough, thinking that things were OK. In a way I suppose they were. Then in February I had my unfortunate event (apologies to Kermode and Mayo's Wittertaining podcast) which, without boring you with details involved at various points: a massive hypo, loss of speech function, a suspected stroke and a trip to A&E. Suddenly the goalposts shifted and control which was 'good enough' was no longer good enough.

At about that time we began looking around online for people writing about their life with diabetes. There were a few European blogs, seemed to be almost nothing in the UK and quite a large number in the US. So we decided to begin our own blog - somewhere to share our experiences, rant, weep and post questions. Mostly writing for ourselves, but with some small hope that our shared experiences might offer support to others living with or affected by diabetes.

Life, like drawing is often a case of 'the more you look, the more you see'. Almost as soon as we had started writing about our own experiences we began to get feedback, comments and contact from a huge network of online PWD (people with diabetes). We began to have contact with well-established blogs, busy forums and frantic tweeterers from all over the globe. Before long I came across the term DOC (the Diabetic Online Community), or to give it it's official US-style title the Awesome DOC.

Steady now. Here's where it's going to get mushy.

You guys are amazing. Absolutely, completely and staggeringly amazing. Helpful, supportive, full of empathy, encouragment and very, very funny. Wise without being pushy. Full of advice but empty of 'rules and regulations'. I learned more tips, tricks, approaches and strategies in 6 months' contact with this online community than I have in maybe 15 years of appointments with Consultants, Registrars, Diabetes Specialist Nurses and Dieticians. I have been supported by people living with all different types of diabetes and have finally began to understand a little about life with type 2. Crucially all information is always suggested from the basis that everyone is different, there is no one-size-fits-all approach which will work. No overtones of judgement. A recognition that everyone will manage in their own way, with their own targets. Their own truimphs, failures and weaknesses. That we are all struggling against this common enemy on our own unique body-shaped battleground.

It struck me earlier in the year when the kids were listening to the Glee soundtrack (don't ask me which one), that the DOC should have Bill Withers' 'Lean on Me' as its anthem (a power-chord laden reworking by Blunt Lancet, naturally)...

Sometimes in our lives we all have pain
We all have sorrow
But if we are wise
We know that there's always tomorrow

Lean on me, when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
'Til I'm gonna need
Somebody to lean on

If there is a load you have to bear
That you can't carry
I'm right up the road
I'll share your load
If you just call me

So just call on me brother, when you need a hand
We all need somebody to lean on
I just might have a problem that you'd understand
We all need somebody to lean on

I still have ups and downs, hypos and hypers, but these seem fewer and further between. Thanks to the advice and support I have been given from people I have never met (nor in many cases am I ever likely to) I can honestly say that I have never felt so in control of my diabetes in all the years since diagnosis. I am not due to have an HbA1c until around April but my monthly averages for the last five months hover around 6.9mmol/l which, if the conversion formula is to be believed, equates to an HbA1c of around 5.9%. That's a full 1% drop since my last one.

So thank you all. Here's to a happy, healthy and spectacularly well controlled 2011 for everyone.

Every day ups & downs on Twitter

For those that like the world of tweets and twittering (and who doesn't?) we have set up a twitterfeed of the blog as @everydayupsdwns.

We will also posting any little updates and/or interesting bits of Diabetes-related stuff that we come across online. How could you resist?

You can follow us here: http://twitter.com/everydayupsdwns