I’m a Type-1 diabetic and have been for over 14 years, I’m also a postdoctoral researcher in the UK focussing on the mechanisms of insulin resistance!
In addition to my scientific research, I’m interested in developing potential tools that can further improve the lives of diabetics.
I hope its not rude of me to post this here, but I’d like to get the views of diabetics (both Type-1 and Type-2 but primarily Type-1) and I’ve generated a survey here to gather these thoughts.
It shouldn’t take more than 12 minutes if you happen to fill it in!
Thank you in advance for all that respond.
I’ll definitley be back here with updates!
I had a hard time with some of your questions. There were times where I could not really accept any of the answers. Or none seemed to fit.
This one where it asks if you have had severe hypoglycemia,
Once a year or several times a year or I have never had hypoglycemia. Misses a lot of people where it happens rarely or every few years.
Also when it asks how many times a day do you test blood, there was no option for never. Because with cgm I rarely test my sugars outside that.
Thanks for letting me know! This is due to my poor experience in making a survey. I’m going to re-word those questions so people don’t have those same problems.
Thanks again!!
I’m also having some trouble, and don’t know the appropriate answer to pick, or in retrospect realized I picked the wrong one(s)…
I don’t know if you had a choice in the matter, but the ethnicity question is silly. We might look a certain color, but we’re all a mash-up of regions.
And what about unemployed and not looking, or homemaker?
There are way more than 2 types of diabetes, such as LADA (often distinguished from type 1), MODY, medically/trauma induced, and even “Type 3” for caregivers.
Question 11 should be changed to reflect CGM usage, too, as in “I test constantly throughout the day.”
How does question 12 relate to CGM usage? If every single data point = a test result out of range, then I’m swimming in them. If you mean each high and low episode (series of consecutive data points), then that’s something very different. You might want to also specify a range, i.e. 70-180, because many of us use different target ranges.
26, the question asking if you have any complications should really come BEFORE the one asking if you’re worried about complications, because the “worried about getting” is really confusing when it pops up and you’re thinking about the ones you already have.
I can’t even finish the survey because the last question is mandatory, and I don’t use any tracker apps like that.
Hi Robyn, thank you so much for pointing these things out!! As you can tell I’m still working out some links and your suggestions will definitely improve this work. Apologies for the questions that won’t allow you to move on. I will sort these now so that others can complete the survey.
I am having trouble answering some of the questions relating to a diabetic specialist since I don’t use one. I haven’t in the last 33 yrs since my son was born. If I was on a pump I might use a specialist. I have my GP write my insulin prescriptions. He trusts me to know what I am doing. To reduce insulin resistance I eat very little fat.
Thank you very much for trying to fill out my survey. I will change the wording of this question. But essentially I mean, any healthcare professional you see that helps with your diabetes (like prescriptions/pumps/courses etc) and therefore I would include your GP. Again apologies for the poor wording and thanks for your patience!
Regards,
Dinesh
Thanks to everyone who has responded so far, and for helping me to improve this survey!!
I really appreciate this and I’m extremely thankful for the time you’ve taken to fill this out
Dinesh
The use of the word “test” in Question 10 doesn’t make sense to me: I look at my CGM a lot but only do fingersticks as needed (calibrations, confirming lows or weird readings, etc.).
You’re right there! Another poor wording from me. Im meaning check (including checking your cgm). I’ve changed that to make more sense I hope to: how do you choose when to “check” your blood glucose?
Instead of test.
Also in regards to the A1C, the range was kind of narrow… like if you have an A1c over 6.5, it’s like you have poor control. Not true. My last A1c was 6.6, which is awesome for me. So you may want to give people more choices…
Hi Ame, this is true, I will change this. I was only using those ranges from a purely clinical perspective where most doctors and healthcare professionals will aim for their patient to get in and under a certain range. I’ll add more options though.
Thanks for this idea!
I couldn’t complete the survey. I look at CGM frequently. I use glucose meter for calibration, during CGM sensor warmup and any other time I feel I need to - no fixed times or events, but definitely not random. I use BG targets as operational control, like guard rails on process control. Goals aren’t how many times hypo; I use the International Consensus on Time in Range as shown on Dexcom Clarity AGP report. So it isn’t how many times, it is how long. That’s the point where I quit the survey.
Not sure of your range for A1C, but mine usually comes back as 4.9 or 5.1% (much to the displeasure of the endos who don’t really accept TIR and/or are oblivious to biological variability).
Yes, I agree with you that time in target is a better measure of good blood glucose control, which is why there is more than one question related to ‘time-in target’ and measures of glucose control. This is why I’ve also asked about the number of ‘episodes’ out of range and the time spent in the last month out-of-target ranges as well as HBa1C.
Just to clarify, I wasn’t trying to suggest that goals are based on the number of hypos (although I think its still useful to reduce hypo events).
Again, thanks verry much for looking at the survey and also for your patience. As you can tell I’m still improving this survey in some ways.
Dinesh
Some of us are extremely hard-pressed for spare time in life and we can certainly afford to find 12 minutes to respond to an important survey, but not more, and therefore do not have time to take a “1/2 baked” survey. When you finally have your survey questions reasonably well perfected, please let us know and I am sure that many of us will willingly participate.
Hi CJ,
Thanks for that comment! To be fair, I do believe that the questions are understandable/answerable, however I do care about the comments/feedback of people here and totally believe they will improve it further.
Dinesh
I couldn’t answer all the questions. Does “seeing” my healthcare providers include messaging and video calls?
Question 20 would be “both”. Question 25 “sexual issues” - what does that mean?.
I would definitely include video calls and I would also include messaging if they are able to provide advice about your diabetes over the phone. For example, here in the UK, I can call a diabetes specialised nurse, who can advise me on diabetic issues which is certainly contact with a diabetic specialist.
Sexual issues was in reference to a somewhat common symptom of neuropathy which involves poor sensation in the genital area, particularly for men but can also include women too. For men it can lead to erectile dysfunction and for women reduced blood flow.
I hope this helps, and thanks once again!
