TY - JOUR
T1 - Why #WeAreNotWaiting-Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems
T2 - Multinational Survey
AU - Braune, Katarina
AU - Gajewska, Katarzyna Anna
AU - Thieffry, Axel
AU - Lewis, Dana Michelle
AU - Froment, Timothée
AU - O'Donnell, Shane
AU - Speight, Jane
AU - Hendrieckx, Christel
AU - Schipp, Jasmine
AU - Skinner, Timothy
AU - Langstrup, Henriette
AU - Tappe, Adrian
AU - Raile, Klemens
AU - Cleal, Bryan
N1 - ©Katarina Braune, Katarzyna Anna Gajewska, Axel Thieffry, Dana Michelle Lewis, Timothée Froment, Shane O'Donnell, Jane Speight, Christel Hendrieckx, Jasmine Schipp, Timothy Skinner, Henriette Langstrup, Adrian Tappe, Klemens Raile, Bryan Cleal. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 07.06.2021.
PY - 2021/6/7
Y1 - 2021/6/7
N2 - 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.
AB - 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.
KW - Artificial pancreas
KW - Automated insulin delivery
KW - Diabetes
KW - Diabetes technology
KW - Digital health
KW - Do-it-yourself
KW - Medical device regulation
KW - Mobile health
KW - Motivation
KW - Online communities
KW - Open-source
KW - Patient-led
KW - Peer support
KW - Sleep quality
KW - User-led
UR - http://www.scopus.com/inward/record.url?scp=85107833226&partnerID=8YFLogxK
U2 - 10.2196/25409
DO - 10.2196/25409
M3 - Journal article
C2 - 34096874
SN - 1439-4456
VL - 23
SP - e25409
JO - Journal of Medical Internet Research
JF - Journal of Medical Internet Research
IS - 6
M1 - e25409
ER -