JMIR Publications

ABSTRACT

Background:

Automated insulin delivery (AID) systems have been shown to be safe and effective in reducing hyper- and hypoglycemia, but are not universally available, accessible, and affordable. Therefore, user-driven open-source AID systems are becoming increasingly popular.

Objective:

This study investigated motivations why people with diabetes or their caregivers decide to build and use a personalized open-source AID.

Methods:

A cross-sectional online survey was conducted to assess personal motivations and associated self-reported clinical outcomes.

Results:

Of 897 participants from 35 countries, 80.4% were adults with diabetes and 19.6% were caregivers of children with diabetes. Primary motivations to commence open-source AID included: improving glycemic outcomes (94% of adults, 95% of caregivers), reducing acute (87%/96%) and long-term (83%/91%) complication risk, interacting less frequently with diabetes technology (81%/76%), improving their/child’s sleep quality (72%/80%), increasing their/child’s life expectancy (72%/85%), lack of commercially available AID systems (71%/70%), and unachieved therapy goals with available therapy options (68%/69%). Improving their own sleep quality was an almost universal motivator for caregivers (94%). Significant improvements, independent of age and gender, were observed in self-reported HbA1C, 7.14±1.13% (54.5±12.4 mmol/mol) to 6.24±0.64% (44.7±7.0 mmol/mol; p<0.0001); and Time-in-Range (62.96±16.18% to 80.34±9.41%; p<0.0001).

Conclusions:

These results highlight the unmet needs of people with diabetes, provide new insights into the evolving phenomenon of open-source AID technology, and indicate improved clinical outcomes. This study may inform healthcare professionals and policymakers about the opportunities provided by open-source AID systems. Clinical Trial: Charité – Universitätsmedizin Berlin Ethics Committee EA2/140/18