Psychosocial Impact of Diabetes – Related Technology / Devices / Stuff!

12 Oct

Latest guest blog is from Professor Kath Barnard @DrKathBarnard

It has been an exciting year for diabetes related technology, particularly for those with type 1 diabetes. There have been widely reported leaps forward in the development of the artificial pancreas with research teams around the world conducting clinical trials outside of hospital and laboratory settings.  Summer camps and ‘at home’ trials are ongoing around the world with some very positive results thus far.

New self-monitoring of blood glucose devices are becoming available which add explanation and context to the numbers presented on standard meters. Such devices present an evolutionary development away from simple ‘snapshot’ finger prick testing, to support systems for users and furthermore to flash monitoring systems.  This is where retrospective trend data can provide more detailed information about patterns of blood glucose and help the user fine-tune their basal and bolus insulin delivery to best match their needs.

So, it’s all good one would think on the technologies front and before too long we should be able to report significantly improved outcomes for people living with type 1 diabetes using this advanced technology. Or perhaps it’s a little early for such optimism.

Where is the evidence-base? How do we actually know that new, ‘whizzier’, faster and more detailed are actually beneficial?  How do we know whether there are any specific groups of people with type 1 diabetes who would benefit most from these from these devices and, if there are any for whom the potential for additional burden and increased anxiety associated with these devices could result in unintended detrimental health outcomes?

This is the thing with evidence-based medicine, as practiced in the NHS. It very much relies on a critical appraisal of the evidence-base, and for these new devices this currently seems to be lacking somewhat.  How then are we able to assess the clinical, psychosocial and cost effectiveness of these new devices?  Taking this argument a step further, what outcomes should be we evaluating in such a critical appraisal?  By knowing this, we can then design the clinical trials required to provide the evidence-base that we require.

There is no doubt that glycaemic control, as assessed by HbA1c is a key outcome.  As much as it may pain me as a psychologist, it is difficult to get around the argument that with even the best psychological outcomes, sub-optimal glycaemic control remains the gold standard marker of risk of long-term diabetes related complications.  I would obviously counter that argument with the overwhelming evidence that improved psychosocial and psychological functioning are associated with improved glycaemic control and therefore are of equal importance but this does not always wash with my medical colleagues.

So let’s look at technologies currently available to support diabetes management for people with type 1 diabetes. There is undoubtedly engineering excellence associated with these devices and on paper they should support optimal glycaemic control for users ….. so why is it that so many users still have sub-optimal glycaemic control?  That’s where I come in.  The simple answer that I always give is ‘because life gets in the way’.  On paper, type 1 diabetes seems a ‘not too challenging’ mathematical problem, particularly with the devices available to facilitate optimal self-management.  In reality however, it could not be further from that.  Everything impacts on diabetes control, everything.  Even a maths genius would be hard-pushed to achieve perfect glycaemic control (whatever that is!) without sacrificing other aspects of their psychosocial well-being.  Whilst this may be acceptable in the short term, diabetes is not a short-term condition and for even the most persistent personality, it will eventually become onerous and unreasonable.

Insulin pump therapy for example is associated with numerous quality of life benefits such as increased independence, fewer injections, greater food related freedom and improved psychosocial functioning, as well as biomedical benefits such as reduced frequency and severity of hypoglycaemia. Yet there are also a number of downsides including constant attachment to the device, potential increased visibility of disease state, cost and risk of occlusion and pump failure.   Continuous glucose monitoring devices are associated with improvements in glucose control, however evidence shows that this is dependent upon regular use.  Psychosocial benefits include increased confidence about diabetes control, ability to identify trends and act to remedy patterns of hypo- or hyperglycaemia, and reassurance for parents whilst their child is at school.    Alarm fatigue (particularly false alarms), technical failure and accuracy problems are limiting factors to ongoing engagement, with lack of trust in the devices and irritation with technological failure cited as key reasons for cessation of use. These factors may contribute to the low uptake of CGM use at around 6% at best.

So, the new self-monitoring of blood glucose meters have a lot to live up to. There is no doubt that SMBG is a crucial aspect of diabetes self-management for people with type 1 diabetes and many people with type 2 diabetes, however previous research shows that SMBG is associated increased anxiety and depression for some users.  How do we know that this will not be the case with the new SMBG systems and flash monitoring devices?  The ability to simply ‘swipe the device over the sensor’ is clearly very tempting and enables users to frequently check their blood glucose without having to conduct a finger prick test.  I wonder whether this ability for more frequent, non-invasive checking rather than engaging in the recommended testing frequency of 4-6 times a day is reassuring or whether it contributes to increased anxiety and worry for users.  The truth is that currently we are unable to answer that question.  Nor will we be able to do so until robust clinical trials have been conducted to find out.

Whilst I still maintain that the future is very bright for technologies in the support of diabetes self-management, I equally believe that these must fill a real need. They must be evidence-based and theory driven, developed with people with diabetes as equal members of the clinical research team and meet the needs of the end users from an engineering, biomedical and psychosocial perspective.  Only when we can genuinely say that we have achieved this goal will a device be truly fit for purpose.

My Walk With D

9 Oct

I know!….

I use this quote time after time, but a quick video about my #WalkWithD

http://youtu.be/GJoxETMisj4

Live Long and Bolus

Grumps

20 Shades of D

26 Aug

Diagnosed with Type 1 Diabetes 20 years ago today. It’s been……

 20 Shades

The Strip

I remember the first strip.

She took me through it.

Showing me what to do.

She was gentle, but firm.

First time it took 15 seconds, now it only takes 5.

Now I do it alone, sometimes in public, I don’t care who sees….

(Testing Blood Glucose 8-10 times a day)

 

The First Prick

I was a bit nervous.

I didn’t know where to put it.

How big would it be?

Would it hurt?

How deep would it go?

How much fluid would there be?

(Started on 2 injections per day of mixed insulin. Moved to MDI a few years later)

 

A Full Load

This time she wanted more.

A full load!

She wrapped something around it.

I felt it tighten.

A slight pulsing.

Then it throbbed.

The veins stood proud.

She took it all, but would be back for more tomorrow…..

(Full bloods from arm. Wonder how much taken in 20 years)

 

Insertion

Was fed up with so many small pricks.

Needed something that lasted longer.

Something that gave me more control.

Something that would stay in for longer.

It went in hard and fast, but stayed in as for days….

(Insulin Pump infusion set looked scary, but I prefer it to MDI now)

 

Double Insertion

I struggled with this one.

Could I stand 2 a time?

I’d have to pay for it. Would that be right?

I took the plunge.

Made my request and paid my cash.

Wasn’t sure if I liked it, but got strangely addicted.

I can’t take it twice in the same place, it gets sore.

I sometimes get a nasty rash, so use protection.

(CGM – Expensive, I get a rash off the tape sometimes, but I’ve found it useful in managing my Diabetes)

 

Live Long and Bolus

Grumps

Lift Music…..

28 Jul

Lift Music

You know how it is, you go into a lift, shop or restaurant and playing in the background is that bloody awful music. As soon as you notice it, it annoys the crap out of you, interrupts your thought process and no matter how hard you try to push it to the back of your mind you can’t.

After a while it begins to become background noise. Because it’s been there for a while it’s started to become a constant and you brain knows it’s there but starts to tune it out. It’s less annoying and you can live with it. You notice if there is a change of song, but basically it’s not pissing you off as much it did at the start.

Then you basically ignore it. Not deliberately, but it’s been there for so long droning on in the background that you don’t even notice the change in song track. You are too busy going about your business to bother with it.

So after almost 20 years of managing my Type 1 Diabetes it’s kind of become like lift music recently. Too busy with daily life and tuning out the drone of the daily BG checks. Noticing the big changes and reacting to them, but once in range it’s just a drone again that gets ignored. Not in a “rebellious” way, just a “I’m a lazy old git” kind of way where I intend to focus on it tomorrow………..

Personally I don’t see this as a failing or burn out in any way. Just human nature and a hazard of living with Type1 Diabetes for so long. I’m not going to let myself, or anyone else give me a hard time about it. However, I will give myself the kick up the arse I need to start paying attention to what’s important again in my Diabetes Management.

The annual review appointment letter hitting the door mat is a good reminder that I need to sort this out, and the focus starts now, not tomorrow!

Live Long and Bolus.

Grumps.

 

Grumpy’s Guest

9 Jun

PC

Before you ask, no I am not staying at Grumpy’s house!  My name is Paul Coker and I was diagnosed with Type 1 Diabetes back in 1977, when I was five years old.  I grew up with everybody telling me about the things that I cannot do because I have diabetes.  This was a huge mistake my diabetes has meant that every day I beat the odds and set new standards, you might prefer to call this stubborn, I call it determination.

 

You may know me already for the voluntary work that I do with JDRF and INPUT Diabetes, I have even had the odd spot in the newspaper and on regional TV talking about diabetes.  I love to challenge my diabetes in a variety of insane ways and have walked the Welsh 3 Peaks (this means reaching the summits of the highest mountains in North, Mid and South Wales inside of 16 hours), last year I ran a half marathon and I have walked on burning coals (twice in the last month) all to raise awareness of diabetes and funds for research into type 1.

 

One cold and damp weekend in the middle of March 2014, twenty-two strangers with a common goal met in North Wales and we began our training for a fantastic expedition.  In June we will be forming an international team, 19 of us have T1D, and together we will attempt to break a record for getting the most people with T1D to the summit of Kilimanjaro in a single expedition. The mountain stands almost 6 Kilometres (or 19,340 feet) above sea level and in addition to all of the normal challenges this adventure brings it seems that type 1 diabetes and altitude are not necessarily the best of friends.  As we gain altitude the atmospheric pressure will drop and so will the temperature.  This means that our blood glucose meters may not work, for those of us using insulin pumps they are only guaranteed to work up to 10,000 feet above sea level.  At the summit we will be in arctic like conditions with predicted temperatures of -25°C which means that we have to protect our insulin from freezing at all times. We will be facing all of these challenges in addition to the low oxygen levels that will make breathing difficult and the other effects of altitude that include making us massively insulin resistant. Click here to read our trip itinary.

 

You are probably asking yourself why would anybody volunteer to do this? I like to think that I am demonstrating how diabetes does not beat me and how by asking the right questions I can achieve my goals in spite of, or even because of, my diabetes. However, my wife thinks that I am having a mid life crisis – I will leave you to judge me. Each of us on this trek has their own personal reasons for participating but collectively we are doing this trip to demonstrate that diabetes does not prevent you from achieving amazing things, we are also raising awareness of T1D through the publicity we are generating (thanks Grumpy) and we are raising funds for JDRF so that they can continue with the vital research that they do which improves the lives of all of us living with type 1 diabetes.

 

I would be delighted if you would visit my just giving page to read more about my story. Any donation that you feel able to make, regardless of how large or small, will be absolutely awesome and will help JDRF to progress the research into a cure. You can rest assured that the costs of this trip are being met by each of us personally so all donations go directly to JDRF rather than subsidizing an exotic holiday!

 

Perhaps if I buy Grumpy a few beers in the pub next time we meet he will allow me to keep you all updated on my training, progress and of course the trials and tribulations of the trek itself. Thank you!

Time Flies.

4 Jun

Chigley

All I can hear as I write this blog is the song from the children’s TV show (of a very long time ago when I was young, and still Grumpy) Chigley “Time flies by when you’re a driver of a train”. Google it kids, its what proper TV was all about when we had 3 channels and programs didn’t start until lunchtime. Yes, we did have insulin, although I wasn’t diagnosed then.

 

Anyway……..

Why is this tune repeating in my head? Well. I was intending to be writing this as my first blog of the year for back in January. However I stared a new Job and time has flow by. Not sure if is like being a driver of a train (no, that’s not what my new job is) as I have never driven a train. Well. There was that one incident, but we’d best not mention that…..

 

So here I am already into the 2nd half of the year. This year sees my 20th year of having Type1 Diabetes, with my Diaverasry on 26th August. That time has flown by to. It really doesn’t bother me that I’ve had it for 20 years. After all I will be cured in 10 years’ time. Right? However the speed at which those 20 years have passed does bother me. One of the things that sticks in my mind from my stay at Hotel NHS back in August 1994 is being told that Complications can start after 20 or 30 years of having Type1. For the first time in my life I am an early achiever! Yay for Grumps!! I developed some damage to my left eye a few years ago. Nothing that needs treatment and it’s not progressing. Also I have little feeling in my feet (I will save the drawing pin story for another time). Again, none of this really worries me, it’s a fact of life and nothing I can change, but it does focus me on the management of my diabetes because the time will continue to fly and I need to keep things in check as much as possible.

 

So in an attempt to motivate myself to keep things in check, I set myself a goal of having my first ever sub 7% HbA1c by the end of the year (yes, it is measured in %, I refuse to change (please see Grumpy frown to back this up)). For the second time in my life I again aver achieve! The first A1c of 2014 comes in at 6.9%. Good news but I fear I’ve peaked to early (unless I don’t have any more tests this year……. Would I?….). The challenge now is to keep it there or if I can drop it a bit more. Never easy. Diabetes of any Type has never read the “rule book” and we live busy and complicated lives. Something I will always remind my Health Care Team (forcefully if I have to). I manage my diabetes the way I want to so that I can live my life the way I want. It’s about my quality of life, not their statistics.

 

Anyway. Enough of my Grumpy Grumbles. Here’s to the next 20 years  of beating my Type1!

 

I wonder if I ever will drive a train again?…..

#LiveLongAndBolus

From Selfie to Frownie

16 May

So

For Diabetes Pictures…..

 

Some I made…..

Breaking BG

Breaking BG

Who Says I’m Insulin Resistant?

iPhone Backup 722

What Should your Meter Really Say?

iPhone Backup 723Nuke BGHypo Hunger

The AlcoPump

iPhone Backup 726

Meter of Mass Destruction

Pre Reset Backup 078

Some of the Amazing People I’ve met…….

 Pre Reset Backup 074Pre Reset Backup 051 Pre Reset Backup 036 Pre Reset Backup 039 Pre Reset Backup 072 Pre Reset Backup 032

Pre Reset Backup 068Pre Reset Backup 066  PB

iPhone Backup 692

iPhone Backup 856

Live Long and Bolus

Grumps.

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