What I am about to share with you, has been shared with me from our friends from Glu, a T1D exchange Community and T1D Exchange. I’m sharing it because so many have been inquiring as to the data from their extensive survey entitled: Driving patient-centric research: DKA & Misdiagnosis.
Let’s be very clear about these findings…..THEY ARE VERY PRELIMINARY and these findings will be reported in much greater depth and with additional context in publications. This is in progress as we speak. After you read this, you will have a ton of questions, and that is fine—-but please know that nothing more can be released at his time until the information is released in publications; when it will be accompanied by more thorough findings.
The study came about because in 2015 there were a few well-publicized tragedies involving children passing away as a result of type 1 diabetes. In these cases, they were not diagnosed in time. Discussions with KOLs (Key Opinion Leaders) revealed that there is not any large-scale, patient centric data available on the diagnosis experience. Glu and T1D Exchange created a survey to collect this information.
The study was created based on seven tiers of interaction: Current events, Discussion with Key Opinion Leaders, Survey Design and Deployment, Analysis to pinpoint predictors (WHERE THEY ARE RIGHT NOW), disseminate findings, Raise Awareness, Affect change and prevent tragedy.
The survey was developed by Glu and the T1D Exchange Clinic Registry with an IRB approval. 2700+ participants’ response were tallied about their diagnosis experience.
Just some preliminary data from T1D Exchange revealed the following:
>35% of all participants reported that they were not diagnosed until more than one month after they noticed symptoms.
>41% of participants reported DKA at the time of their T1D diagnosis
>20% of participants report being admitted to the ICU at the time of their T1D diagnosis.
>24% of participants report being misdiagnosed with another condition at symptom onset.
>16% of pediatric patients were reported as being misdiagnosed compared to 39% of those diagnosed over the age of 18.
ANALYSIS TO BETTER UNDERSTAND THESE FINDINGS IS ONGOING
There will be much more data coming out on this but since so many have been asking, I wanted to you see just some of the data thus far. What is now evident, at this point, is that now there should be no doubt that when 1 in 6 children and 1 in about every 2.5 adults are being misdiagnosed…….this country has a problem with T1D diagnosis.
When this battle started, it was very difficult. We had nothing but a thought. A thought and the belief that there was a problem coming from the so many I had been in touch with over the years. With the outpouring of support from the diabetes community both during and after the news of Little Reegan and Kisses for Kycie interest grew; and grew quickly.
Now—-it’s a movement. In as much as we all could shout from the mountaintops (and did), and even share the horror stories, the constant response was, “Yes, this is horrible but is there data showing larger proof?” Now, we have indisputable data. When I read the data, to be honest…….I burst out crying. Now we know. To the so many doing so much, and way too many to mention here, thank you. To Anna Floreen, Danielle Gianferante, Dr. Henry Anhalt and all those at Glu and T1D Exchange, thank you for caring and creating this survey. We know how much more work you will be doing and we look forward to the comprehensive final findings.
To all those who lost an angel in this battle, and to whom a solemn pledge was made not to not stop until we have changed this paradigm——I share this data but know that it is just a weapon to help us in this ongoing battle. A big weapon. We will not stop.
I am a DiabetesDad.
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*preliminary data collected from over 2,700 individuals who participated in a 2016 T1D Exchange survey about their diagnosis experience.