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Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey

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 stu...

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Autores principales: Braune, Katarina, Gajewska, Katarzyna Anna, Thieffry, Axel, Lewis, Dana Michelle, Froment, Timothée, O'Donnell, Shane, Speight, Jane, Hendrieckx, Christel, Schipp, Jasmine, Skinner, Timothy, Langstrup, Henriette, Tappe, Adrian, Raile, Klemens, Cleal, Bryan
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8218212/
https://www.ncbi.nlm.nih.gov/pubmed/34096874
http://dx.doi.org/10.2196/25409
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author Braune, Katarina
Gajewska, Katarzyna Anna
Thieffry, Axel
Lewis, Dana Michelle
Froment, Timothée
O'Donnell, Shane
Speight, Jane
Hendrieckx, Christel
Schipp, Jasmine
Skinner, Timothy
Langstrup, Henriette
Tappe, Adrian
Raile, Klemens
Cleal, Bryan
author_facet Braune, Katarina
Gajewska, Katarzyna Anna
Thieffry, Axel
Lewis, Dana Michelle
Froment, Timothée
O'Donnell, Shane
Speight, Jane
Hendrieckx, Christel
Schipp, Jasmine
Skinner, Timothy
Langstrup, Henriette
Tappe, Adrian
Raile, Klemens
Cleal, Bryan
author_sort Braune, Katarina
collection PubMed
description 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 (HbA(1c)), 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
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spelling pubmed-82182122021-07-02 Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey Braune, Katarina Gajewska, Katarzyna Anna Thieffry, Axel Lewis, Dana Michelle Froment, Timothée O'Donnell, Shane Speight, Jane Hendrieckx, Christel Schipp, Jasmine Skinner, Timothy Langstrup, Henriette Tappe, Adrian Raile, Klemens Cleal, Bryan J Med Internet Res Original Paper 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 (HbA(1c)), 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 JMIR Publications 2021-06-07 /pmc/articles/PMC8218212/ /pubmed/34096874 http://dx.doi.org/10.2196/25409 Text en ©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. https://creativecommons.org/licenses/by/4.0/This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.
spellingShingle Original Paper
Braune, Katarina
Gajewska, Katarzyna Anna
Thieffry, Axel
Lewis, Dana Michelle
Froment, Timothée
O'Donnell, Shane
Speight, Jane
Hendrieckx, Christel
Schipp, Jasmine
Skinner, Timothy
Langstrup, Henriette
Tappe, Adrian
Raile, Klemens
Cleal, Bryan
Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey
title Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey
title_full Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey
title_fullStr Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey
title_full_unstemmed Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey
title_short Why #WeAreNotWaiting—Motivations and Self-Reported Outcomes Among Users of Open-source Automated Insulin Delivery Systems: Multinational Survey
title_sort why #wearenotwaiting—motivations and self-reported outcomes among users of open-source automated insulin delivery systems: multinational survey
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8218212/
https://www.ncbi.nlm.nih.gov/pubmed/34096874
http://dx.doi.org/10.2196/25409
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