Two weeks ago, we launched a survey in the TuAnalyze application (http://tud4.us/TuSurvey) to complement A1c data with information on diabetes type, treatment and more. So far, hundreds of TuAnalyze users have taken the survey. This is a great start but we need your participation to better understand our strengths and challenges.

Preliminary aggregate data is extremely illuminating. For example, more than 1/3 of the people who have taken the survey report financial struggles to cover the costs of their everyday diabetes care-even people who have insurance. And so far, 1 in 5 survey respondents reports having struggled with depression-and this group tends to show higher A1cs. These are the kinds of findings we think will help mold and improve what we do in the community to better serve everyone.

Please contribute your experience to our understanding of the community and its needs by taking the TuAnalyze survey today. It won't take more than 5 minutes and it will help everyone:
http://tud4.us/TuSurvey

If your interests are not covered by the survey, take a part in the conversation on this topic and share your suggestions about things you would like to see incorporated.

Last, if you entered A1c values on TuAnalyze before, please take a moment to add any recent results you may have: http://tud4.us/TuAnalyzeProfile

Thanks for your support!

Tags: survey, tuanalyze

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"For example, more than 1/3 of the people who have taken the survey report financial struggles to cover the costs of their everyday diabetes care-even people who have insurance."
yes, but the way that is asked, it's hard to answer "no". That's the problem with surveys.
Hello TS, thank you for participating. I agree, surveys are challenging to draft! I would be delighted to consider wording changes for future surveys. So far, the aggregate data are split on this question--suggesting that the wording has not stopped people from describing different perceptions and experiences. We will see what happens as the community continues to respond.

Best,
Elissa Weitzman
One of the questions asks what was the turning point, and none of the answers were really right. I answered that I had experienced a medical complication, but really it was my father & step-father - both diabetic - who had the complications, which led me to take my own diabetes more seriously.

My step-father had had Type I diabetes since he was 17, and was recently having black-outs from drops in his BG levels, which he hadn't told anyone about. (It had been happening at work.) He was on his way home from work, walking up the street, had one of the black-outs, fell and hit his head. It caused bleeding in the brain and he died a few days later without ever waking up. That was in August 2009.

My father has had Type II diabetes for several years now. He also suffers from depression. He fluctuates between taking all his meds and being ok, to getting depressed and not taking any. He started having balance problems in the fall of 2008, then diabetic neuropathy in his hands and feet, which led to him having to retire early. Then his vision and kidneys went, in the fall of 2009, and he can no longer drive or do any of the things he used to, and he has to have dialysis every other day. He still doesn't take care of himself right, and things are only going downhill.

Those events are what prompted me to take my diabetes seriously, and change my diet to control my BG. Without insurance, but making too much money to qualify for the state funded insurance, I have no doctor and no meds, so I have no choice but to do it myself. Thank heavens for the internet where I can find information on the latest research. I was even lucky enough to get a free A1C test kit through one site (here I think!).
Thank you very much for taking the time to describe your experiences.
I think one of the survey questions was how quickly I can get an appointment with my diabetes doctor. The catch is, so far, she is the one who sets when I'm going to see her next. I haven't had an emergency yet to call in an appointment, so I don't know if she would squeeze me in the same week I might want to see her. I think so, as she also is part of an emergency clinic and the hospital is right next door.

Since I am still a new diabetic, there hasn't been a turning point. I happened to find out I was diabetic when I was hospitalized for pneumonia. I suppose that is a complication. The way the survey question was worded, it would seem I didn't take my diabetes seriously until this complication, but I wasn't aware I had it so of course it was out of control.
Than you very much for your explanation and feedback.
As a growing community of at least 10,000 insulin dependent folks and with just a few insulins on the market,
can't we PLEASE poll ourselves to find out SOMETHING ANYTHING about what's going on with us
independently of phama et al?

Here's an example of an issue of some consequence I believe:

How long have you been insulin dependent?

Have you changed your insulin type [added or subtracted a new insulin or switched] during the past three years?

Why? what were the precipitating symptoms? or financial issues?or other reasons?

After x [3 minimum, 6 better] months, what was the result?

Do you feel better worse or the same
[we could get more specific here....]


17000 strong -- what a great opportunity to find something out!!!!
We don't have to go along with pharma run studies,
which are far and few between anyway for obvious reasons.

Anyone else thinking along these lines?
Tess,
Your thinking is our thinking.

It is precisely because of that very reason, because our data is ours, that we have turned down approaches by for-profit companies to sponsor this project. As long as I have something to say about it, TuAnalyze will remain a project funded by federal and foundation grants, as in the case of the funding we've worked with so far (from CDC).

What kind of things would you like to see being learned/studied through TuAnalyze?
aloha Manny,

Apologies for the delay getting back to you. What would be useful to know that we could collect information on and document has been on my mind for days now..... My ability to develop a working model for questionnaire[s] is
severely limited, but perhaps the following will be intelligible.....

Thinking about how to sort TuDiabetes community's database of A1C readings and how to expand on the information?

Perhaps a sort of folks by A1C average over a couple of years would be a place to start:
the Sixes and lower, the Sevens, the Eights, the Nines and higher
Each group might establish its own priority for gathering additional data.

For instance I personally am most interested in sharing / finding out information
among the insulin dependent [more than 5 years say] members whose A1C readings are consistently between 5.5 and 6.5 i.e the Sixes [6 average] and am eager to know:

What correlation[s] there may be between Insulin regime [type and/or combination of types used] and how you feel?

General questions: How do you feel? How is your health?
Then specific questions:
Have you changed your Insulin[s] regime during the past 3 years?
From what to what?
Why?
With what results after 6 months?
ie what has improved ? what's the same? what's worse?
are you feeling better, the same, worse?
functioning better, same, worse?



Also, when we sort A1C levels by overall 2-3 year avg of 6, 7, 8, 9 or higher as mentioned above ,
we can also investigate correlations between them.
One simple example:
1 On average, how often do you check your glucose?
2 With approximately what frequency do you experience Glucose readings between 60-70?
3 Between 50-60?
4 Below 50?
This would be a way to pinpoint which A1C levels go low the most, often or even if there is a noticeable difference
in low frequencies between the average 6s or lower, the 7s, the 8s, the 9s and higher.

Thanks for your time and also for attempting this whole thing.
All the best,

Tess
Thanks so much for taking the time to write such a detailed post, Tess!!!

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