OPEN published their first scientific study: Self-Reported Clinical Outcomes of Paediatric DIYAPS users

The OPEN consortium published their study on “Real-World Use of Do-It-Yourself Artificial Pancreas Systems in Children and Adolescents with Type 1 Diabetes: Online Survey and Analysis of Self-Reported Clinical Outcomes” in JMIR mHealth uHealth on July 30th, 2019.

The JMIR and JMIR mHealth and uHealth (Journal of Medical Internet Research) are the top #2 journals in digital health. Scientific articles are published online and openly accessible to all free of charge. mHealth is short for ´mobile health´ and describes the use of mobile communication devices (e.g. mobile phones) and wearable devices (e.g. smart watches) for information, data collection and health services. uHealth stands for ´ubiquitous healthcare´ and refers to the accessibility of healthcare to anyone, anytime and anywhere.

The recently published study reports first results of the “DIWHY survey” (more results to come!), an online survey to whom 209 caregivers of children and adolescents from 21 countries, all using a Do-It-Yourself Artificial Pancreas have responded. This survey is currently the largest study of DIYAPS users on a global level and provides new evidence about real-world use of these systems in children and adolescents.

Main findings of the study are:

  • Tight glycemic control and the lowest achievable HbA1c without severe hypoglycemia is important, especially for young people in order to prevent them from long-term complications and other diseases occurring alongside the diabetes.
  • This is far from reality even with modern (commercial) technology: Only 17% of all children and adolescents with diabetes achieve an HbA1c level below 7.5%. The latest guidelines even recommended an HbA1c of <7.0% for people with diabetes of all age groups.
  • Closed-loop insulin delivery systems (“Artificial pancreas”) designed for commercial use have improved the situation for people of all ages during various clinical trials. But these systems are not available, accessible or affordable in all countries. That is the reason why a community of people with diabetes and their families have created own closed-loop systems by combining commercial products with new tools and algorithms in order to adjust the insulin delivery to their glucose levels. This #WeAreNotWaiting community shares knowledge via open source platforms in order to help one another to improve their lives with diabetes. And up until now these systems are used by an increasing number of people with diabetes – including caregivers for their children.
  • Initial observational studies about DIYAPS have been auspicious, but there has not been enough research about children and adolescents using DIY Systems in everyday live. And that was the reason for OPEN to start a corresponding survey. The online survey was distributed via social media platforms generally utilized by the DIYAPS users. This survey was designed by OPEN´s interdisciplinary team of medical doctors, social scientists, public health researchers and patient innovators, so the questions were multifarious.
  • OPEN did not only ask for possible changes of the HbA1c and of the mean time in range (sensor glucose level between 70 and 180 mg/dl – 4 or 10 mmol/L) but also for the country they live in, their income, their education level, the duration of their diabetes and how long they are using their system, which one they are using and what made them create a system for the child they are responsible for.
  • Caregivers reported a significant HbA1c improvement although the average HbA1c of the participating children had already been below the recommended number: 6.91% down to 6.27%. And the longer the children used a DIYAPS, the better the HbA1c became. The mean time in range increased from 64.2% to 80.68%. Users of all DIYAPS systems and all age groups showed similar results.
  • Only a few number of participants (29 of 2009) reported about difficulties with DIYAPS. Mainly, these difficulties had been getting the devices and setting up the closed loop.
  • Comparing the results to the ones with adult users of DIYAPS systems one can say that the findings are in line with each other and with clinical trial results in commercially developed closed-loop systems.

We express our gratitude to the families of the DIYAPS community who supported and greatly contributed to this survey and we are looking forward to your thoughts and comments!

To read the full article, please find the original publication at JMIR mHealth uHealth here.

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DIWHY Survey ended

Today our DIWHY survey has ended. Amongst other things we asked why people decided to use such a system, if and how their HbA1c and Time in Range has changed during DIY APS, and we wanted to hear their individual stories – how did they become aware of these systems, how did they manage to start their own system, how did it change their lives.
More than 1000 people have participated – adults, adolescents, caregivers.
The OPEN team thanks all of them very much!