@Article{info:doi/10.2196/25409,
author="Braune, Katarina
and Gajewska, Katarzyna Anna
and Thieffry, Axel
and Lewis, Dana Michelle
and Froment, Timoth{\'e}e
and O'Donnell, Shane
and Speight, Jane
and Hendrieckx, Christel
and Schipp, Jasmine
and Skinner, Timothy
and Langstrup, Henriette
and Tappe, Adrian
and Raile, Klemens
and Cleal, Bryan",
title="Why {\#}WeAreNotWaiting---Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey",
journal="J Med Internet Res",
year="2021",
month="Jun",
day="7",
volume="23",
number="6",
pages="e25409",
keywords="diabetes; artificial pancreas; automated insulin delivery; open-source; patient-led; user-led; peer support; online communities; diabetes technology; digital health; mobile health; medical device regulation; motivation; sleep quality; do-it-yourself",
abstract="Background: Automated insulin delivery (AID) systems have been shown to be safe and effective in reducing hyperglycemia and hypoglycemia but are not universally available, accessible, or affordable. Therefore, user-driven open-source AID systems are becoming increasingly popular. Objective: This study aims to investigate the motivations for which people with diabetes (types 1, 2, and other) or their caregivers decide to build and use a personalized open-source AID. Methods: A cross-sectional web-based survey was conducted to assess personal motivations and associated self-reported clinical outcomes. Results: Of 897 participants from 35 countries, 80.5{\%} (722) were adults with diabetes and 19.5{\%} (175) were caregivers of children with diabetes. Primary motivations to commence open-source AID included improving glycemic outcomes (476/509 adults, 93.5{\%}, and 95/100 caregivers, 95{\%}), reducing acute (443/508 adults, 87.2{\%}, and 96/100 caregivers, 96{\%}) and long-term (421/505 adults, 83.3{\%}, and 91/100 caregivers, 91{\%}) complication risk, interacting less frequently with diabetes technology (413/509 adults, 81.1{\%}; 86/100 caregivers, 86{\%}), improving their or child's sleep quality (364/508 adults, 71.6{\%}, and 80/100 caregivers, 80{\%}), increasing their or child's life expectancy (381/507 adults, 75.1{\%}, and 84/100 caregivers, 84{\%}), lack of commercially available AID systems (359/507 adults, 70.8{\%}, and 79/99 caregivers, 80{\%}), and unachieved therapy goals with available therapy options (348/509 adults, 68.4{\%}, and 69/100 caregivers, 69{\%}). Improving their own sleep quality was an almost universal motivator for caregivers (94/100, 94{\%}). Significant improvements, independent of age and gender, were observed in self-reported glycated hemoglobin (HbA1c), 7.14{\%} (SD 1.13{\%}; 54.5 mmol/mol, SD 12.4) to 6.24{\%} (SD 0.64{\%}; 44.7 mmol/mol, SD 7.0; P<.001), and time in range (62.96{\%}, SD 16.18{\%}, to 80.34{\%}, SD 9.41{\%}; P<.001). 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 health care professionals and policy makers about the opportunities provided by open-source AID systems. International Registered Report Identifier (IRRID): RR2-10.2196/15368 ",
issn="1438-8871",
doi="10.2196/25409",
url="https://www.jmir.org/2021/6/e25409",
url="https://doi.org/10.2196/25409",
url="http://www.ncbi.nlm.nih.gov/pubmed/34096874"
}