An interesting read. Obviously, we’re on a pump, so we think it’s better for our family, but some of the numbers in this study are striking – namely the higher rate of adverse events on a pump: https://www.bmj.com/content/365/bmj.l1226
As you say an interesting read, but honestly, comparing pump vs no-pump in first year following diagnosis isn’t as helpful as I would like. Learning diabetes, learning MDI, learning pump failures all at the same time seems hard. We were happy to do MDI for 6 months then add the pump. That way we were able to know what was a “normal” variation and what wasn’t. Having to try and figure both out at the same time seems crazy, unless you have a really young kid and need the smaller dosing increments that a pump provides.
But it sounds like the doses for both mdi and pump groups were determined strictly by formula… basically ruling out the learning curves, experience gap, etc etc and just strictly looking at “which one works better” all things being equal…
In other words how much either group knew or didn’t know was systematically cancelled out so that just the performance and adverse effects of the insulin were being measured, or at least that was the design
Which is, of course a large part of the reason that neither group met treatment goals… but it looks like the mdi group was appreciably closer
I am inclined to agree with you. You can parse situations all you want – and in fact, doctors are informally making case-by-case decisions all the time. But to me, this is a pretty robust design which shows not much difference in A1C and greater incidence of DKA, which is unsurprising when your basal insulin is delivered via short-acting through a needle.
That said, there’s no way we could ever get Samson to agree to a dozen injections a day and there’s no way we could get the level of control we do with a pump – not because it’s a better delivery system (I’m inclined to think it worse, all else being equal) – but because there’s no way we could get his current teachers to give boluses via syringe/pen and certainly not with the frequency that we make corrections now. And of course, the fact that his pump automatically starts correcting highs when he starts spiking from a misttimed bolus or food calculation error, makes a huge difference for us. We can be much more aggressive treating highs because of that.
Agreed. Being in the 1st year now, I’m finding the biggest hurdle to be the psychological impact that the “skin breaking” care (MDI, finger pricks, CGM/pump insertions, etc.) is having on my 7 year old. We had some rather insensitive care providers when we were admitted at diagnosis, and that has had a lasting impact on her fears and, by extension, my frustrations. We’d barely recover from a meltdown over a bolus shot before she wanted to eat again.
Pre-diagnosis, she was always very even-keeled and had a ‘grin and bare it” attitude. But those initial days just broke her spirit. And now, two months into the Omnipod with a solid low-pain regimen and calming exercises, she still has a panicked meltdown when it’s time to hit that Start button on a pump change. The benefit is that this only happens every 3 days instead of every 3 hours, which completely changes how we are relating to the disease.
So while a lower a1c is certainly our ultimate goal (we are at 8.2% in month 3 and getting better), my real focus is on getting her there with the fewest tears possible. We’ve now found an Endo who sees eye to eye on this goal and has been wonderful, but sadly damage was already done. I’d love to see more studies, increased careprovider training, and advocacy, that addresses newly diagnosed quality of life.
Do you use numbing cream for the Omnipod and CGM changes? One of our friends who was diagnosed at about your daughters age used numbing cream for their site changes and Dexcom insertions. They were otherwise a very even keeled young person. Might help.
we use numbing cream for Dexcom changeouts and he can’t feel it…but he still gets nervous and watches the site until I hit the button. I think it helps with the pain but not with the mental anticipation.
Yeah the psychological part of this disease sucks. We were lucky that my son was older and that particular problem hasn’t been an issue for us, but we see the remnants of it in many of the young people at our diabetes camp. It seems for many to last well into high school, when my tendency would be to say “suck it up”, but then I realize that is quite unfair from a pancreatic normal.
I tried something with Liam that worked and you may want to try it. It’s a psychological fix. I started asking him if he wanted the big shot or the little shot (of course he always says the little shot), and I would pretend to program that into the PDM. Same shot… But because he believes it’s a “little” shot he doesn’t even cry anymore. This was our biggest hurdle… Before doing this, every change out, he would scream bloody murder.
Your daughter is older than our son so she may not go for it… But it may be worth a shot (no pun intended).
We don’t use numbing cream on Liam because it caused a lot of redness, swelling and rashes.
I find these studies extremely troubling.
Continuous subcutaneous insulin infusion versus multiple daily injection regimens in children and young people at diagnosis of type 1 diabetes: pragmatic randomised controlled trial and economic evaluation
For instance, you know how you might get mad when you are used to using NovoLog and the insurance company says you have to switch to Humalog? Or when United Healthcare said everyone had to use Medtronic pumps?
These kind of studies are what drive those insurance company decisions based on cost factors.
If someone likes MDI, great. If they prefer pumps, then they can do that. Different people have different methods that work best for them.
What is the purpose of this study? Is it like a poll? Which do you prefer, MDI or pump? What works best for you as an individual?
No. It something that will drive decisions for collective treatment, where they can say, “…according to this study, MDI was better for the majority of children based on the factors used and the arbitrary rating system created in the study. So we think your child needs to be on MDI too. Because all children are exactly the same and they need to be treated the same. Plus, it’s cheaper…”
Anyway, that’s what bothers me about things like this. When they try to find a general rule that works best for everyone.
I mean, I agree that’s why these studies are conducted. But they’re being conducted by the National Health Service in the UK. They can’t administer their system given the funds available to them without doing some studies like this. I also thought to myself, “hmm, this probably means kids in the UK will have a tougher time getting a pump.”
But I agree, an insurer like UHC might decide that this study justifies not spending any money at all on pumps for children, for instance.
Still, I also think there is a legitimate question out there – is pump therapy better for children? Some studies suggested this was the case. If new data suggests there’s no difference, then I do think that should guide doctors in general. Case by case situations will always require individualized decision-making, but if a person who is on MDI and doing fine wonders if they should get a pump to improve their control, I think it’s fair to say “odds are getting on a pump is not going to do wonders for your A1C unless you’re avoiding taking injections at specific times, or have specific complicated basal needs.”
I think that is true, but honestly, the first year sucks for almost everyone unless they have a predictable or non-existent honeymoon. I really think the study should be for much longer, or pick people that are in year 3 or something. Of course, that is a tougher cohort to recruit and convince they should participate and have the study dictate the treatment, but year 1 isn’t a breeze for most.
The good news is that UHC should only use this as a reason to delay pump treatment during the first year, and having someone start on MDI and move to a pump isn’t horribly onerous, except in the cases where you need the tiny dosing.
This is genius. Working on a backstory now so I can try this for our pump change tonight. Thanks!
That is so true! And just trying to figure out how your body/your child’s body responds to insulin, types/quantities of food, and activity takes all one’s energy no matter how insulin is delivered!
My back story to Liam was…I just found a setting in the PDM that I had never noticed before. It lets me choose between a “big shot” and a “little shot.”. And I apologized to him for not noticing it earlier. He was just happy to start getting the little shot, finally.
After everything is primed, stuck to his skin and ready for the shot…I ask “Do you want the big shot or the little shot this time?”. His response is always little. I pretend to push some buttons, say “ok…little shot. Got it.”. Push up skin and vwhala.