Don’t know if this has already been posted but found it to be an interesting article regarding user attitudes and expectations of closed-loop systems.
I liked that an interviewee for the article recognized ‘we need to be cautious and mindful as we move forward that there are mismatches between the patient-reported and clinician-reported barriers.’ Absolutely there are, that’s why it’s SO important we, as patients, are vocal about our needs and wants for the best treatment for our OWN individual situation. #wearenotwaiting
Thanks for posting the article. Unfortunately, it appears you need to register as a user in order to view the entire thing. I was hoping to get to the part where they spoke more specifically about people’s expectations with the “artificial pancreas”. I was hoping to hear what they considered reasonable. However, it seemed that the article was really focusing on people’s hesitation to wear insulin pumps in general, as well as sensors and all others “devices”. I didn’t think they really addressed the mismatch between what people hoped for and what they get with the new technology. In fact, one of the two specific benefits they mentioned seemed to be inaccurate, or at least according to the people I’ve heard from. The article mentioned making “fingersticks a thing of the past”, but in my experience, they’ve tripled.
The only expectation I had going into the 670G was the ability to keep up my newfound ability to have good control over my blood sugar. I didn’t do a bit of research before getting it… and had only heard about it in passing. I just wanted to be able to continue doing what I had already begun. It’s why I stifle a laugh when people say that people’s disappointment in the technology is because of their unreasonable expectations… because my own disappointment, disbelief really, was built upon absolutely no expectations at all. In fact, that second benefit, the overnight control, was part of what caused such enormous problems.
I think I read somewhere you’re having a good experience in auto. Is that still true?? I’m eternally interested in people who report good results. Are you in auto all of the time? And for how long? Do you know the secret?
"But what was also interesting is that the younger participants also indicated a lot more diabetes distress. As time went on, that was less of a factor in whether or not people were using diabetes devices,” reported Dr. Hood.
This is a tangent, but I found that interesting, too. A number of studies of early pump users found that pediatric patients tended to be gung-ho, their parents much less so (usually because they were the ones paying the bills). I wonder how much of these young diabetics’ “distress” is transferred from today’s hyper-anxious parents. I don’t recall ever feeling anxious about my diabetes; it was just there. Then again, my parents weren’t overly stressed about it either. My dad never reviewed my urine test results, with me or without me – he might ask “What was your test?” with about the same interest he might ask “How was school?” – and we never discussed treatment beyond him saying, “You can’t eat that.” Compare that with today’s parents who want to discuss everything, who want to view their kids’ Dexcom numbers even after the kids leave home and settle thousands of miles away. Which is not a bad thing in and of itself, I suppose, but if the parents are anxious/distressed/stressed, it’s sure to rub off on the kids. [Oops, did I just step on a hornets’ nest?]
Incidentally, I can see the whole article. Assuming it’s six pages.
So I wasn’t young enough to be able to say how my parents would’ve handled it and what the effect would’ve been on me. I can say, at 27, “distress” wasn’t what was making me resistant to wearing a diabetes device, diabetes devices were what was making me resistant. It was going to cramp my style, no longer a concern because I haven’t had any style since 30, when I started wearing a pump. I wonder if they changed the wording when talking about youth, if it wouldn’t read differently. (Not that 27 is youthful… although, relatively speaking, it’s a baby now).
As far as whether or not I could be a parent who walked that fine line between paying enough attention but not to the level of causing medical-paranoia… DOUBT it. Given my last post where I panicked over a handful of children’s a1c scores. However, I didn’t run off telling them they might have diabetes. So I freaked, ran to you guys, and got it in check before freaking out young children. Still doubt it. In all my best intentions, I’d probably end up with children too “distressed” to wear a diabetes device.
I heartily agree with wanting to see more information about what might be considered reasonable / unreasonable expectations; the article covered a pretty wide area (with a pretty wide paintbrush) more generalized observations, generational (kids/teens to adults - don’t like the appearance of wearing it and how it might affect social interaction), tech-knowledgeable vs. the not-so-tech-savvy (likely to adopt but have high expectations, not at all likely to look into the technology), etc. and what the technological expectations are to those particular groups. I appreciated that the observations recommend a tailored approach to patient education…this is where I think clinicians eff things up (a LOT, in many cases).
I can only speak for my expecations… I fall into an ‘almost tech savvy but not quite’ … experiencing pitfalls, trying, maybe failing, learning, keeping on… frustration and some impatience. In every experience I’ve had with pumping there has been a steep learning curve that culminates in a love-more-than-hate relationship. I think it’s fair to say that I have walked into my pumping experience with high expectations (this will solve everything and I won’t have to think about yadda yadda yadda) to settle in with ’ well, I have to think about yadda yadda yadda and it won’t solve everything, but my (insert better thing here) is improved, and that’s worth it’.
I think the 670G in particular is a huge Your Mileage May Vary instrument. So many have tried fruitlessly, tirelessly, to get the algorithm to work for their particular body and situation…only to experience frustration, stress, and loss of control (or at least sense of it). Is it worth fighting it? It’s totally that individuals call, and I will always support someone’s decision to do what works for them.
For me, the 670G did NOT come without frustrations galore. I started it the end of March, went into auto April, and spent three weeks with the worst BG’s of my life. Decided to do what I kept reading and hearing… ‘let it do it’s thing’ grrrrr this was hard because I am a huge sugar surfer…lied to the pump to get it to give me insulin (‘YES, I DID eat 8 grams of carb, not’), decided this was a bad idea, let it do it’s thing and learn. Slowly BG’S began coming well within line. Began having great overnight readings and my DP has all but disappeared. Still don’t like that I can’t control some aspects regarding set ranges, or do a manual bolus; don’t like that it doesn’t give insulin for hours - but generally it corrects- and overall, it seems to work well for me. It has also forced me to re-approach how I work with this thing, too.
I do kind of wish it were some sort of magical at some points if only…
I bet there was some parental distress, they may have just been good about not displaying it to you.
Couldn’t agree more that parents (well-meaning or not) may have impact on their kiddos… and how the kids eventually approach their self-care. That’s AWESOME if the kid(s) want to keep their loved ones informed - but if not, it’s their decision at that point.
Now I wish there was a hornet emoji. A bee will have to suffice.
Sure… between all of the OTHER things they’re effing up.
Well, that was me, too. But you’re right about the next part,
Which was not my final destination. I did feel that way as I was working my way through it, but I ended up feeling like I could just do better.
That brings back bad memories…
I was able to have a good amount of normal blood sugar, but the highs just drove me crazy. My highs came from that minimum delivery, and my MORNINGS, oh wow… those were unpleasant. But whatever you’ve done looks like it’s successful. Have you changed any settings? That was another area I wouldn’t explore.
Anyway, I’m falling asleep… I’ve gotta end this before I start making less sense than I do already know. I started s Facebook group for members if you’re ever looking for one… vvt
What I ended up tweaking… a lot… was my ICR and my time on board. Dialed both down to a point I KNOW is off (at least from an MDI point and prior pumping point). My ranges used to run ICR of 1:28-30 depending on time of day to NOW of 1:12. Am looking at adjusting back to maybe 1:14 as I have had a few lows. That in itself is crazy.
Time on board has been dialed back to 2 hours, but am considering moving that forward to 2 and a half. My previous was 4. What I’ve kept coming across is people have had to drastically change those two set points to an unheard of / unused personal level to experience better success in auto-mode.
This definitely helped me in my endeavors with the 670G but it had been whole-heartedly un-nerving to dial in. Like I’ve said, I have experienced a few lows, nothing weird, but maybe if dialed back a bit might see improvement. Guinea pig anyone?
I wonder if they changed the wording when talking about youth, if it wouldn’t read differently. (Not that 27 is youthful… although, relatively speaking, it’s a baby now).
… experiencing pitfalls, trying, maybe failing, learning, keeping on… frustration and some impatience. In every experience I’ve had with pumping there has been a steep learning curve that culminates in a love-more-than-hate relationship. I think it’s fair to say that I have walked into my pumping experience with high expectations (this will solve everything and I won’t have to think about yadda yadda yadda) to settle in with ’ well, I have to think about yadda yadda yadda and it won’t solve everything, but my (insert better thing here) is improved, and that’s worth it’.
if only…
I bet there was some parental distress, they may have just been good about not displaying it to you.
A bee will have to suffice.
