Barriers to Uptake of Open-Source Automated Insulin Delivery Systems: Analysis of Socioeconomic Factors and Perceived Challenges of Caregivers of Children and Adolescents With Type 1 Diabetes From the OPEN Survey

Antonia Huhndt; Yanbing Chen; Shane O'Donnell; Drew Cooper; Hanne Ballhausen; Katarzyna A Gajewska; Timothée Froment; Mandy Wäldchen; Dana M Lewis; Klemens Raile; Timothy C Skinner; Katarina Braune

doi:10.3389/fcdhc.2022.876511

Barriers to Uptake of Open-Source Automated Insulin Delivery Systems: Analysis of Socioeconomic Factors and Perceived Challenges of Caregivers of Children and Adolescents With Type 1 Diabetes From the OPEN Survey

Front Clin Diabetes Healthc. 2022 Jul 25:3:876511. doi: 10.3389/fcdhc.2022.876511. eCollection 2022.

Authors

Antonia Huhndt¹, Yanbing Chen², Shane O'Donnell³, Drew Cooper¹, Hanne Ballhausen^{1

4

5}, Katarzyna A Gajewska^{5

6}, Timothée Froment⁵, Mandy Wäldchen³, Dana M Lewis⁷, Klemens Raile¹, Timothy C Skinner^{8

9

10}, Katarina Braune^{1

4

11}

Affiliations

¹ Department of Paediatric Endocrinology and Diabetes, Charité-Universitätsmedizin Berlin, Berlin, Germany.
² School of Public Health, Physiotherapy & Sports Science, University College Dublin, Belfield, Ireland.
³ School of Sociology, University College Dublin, Belfield, Ireland.
⁴ Berlin Institute of Health (BIH), Berlin, Germany.
⁵ #dedoc° Diabetes Online Community, Dedoc Labs GmbH, Berlin, Germany.
⁶ Population Health Sciences, Royal College of Surgeons in Ireland, Dublin, Ireland.
⁷ OpenAPS, Seattle, WA, United States.
⁸ Department of Psychology, University of Copenhagen, Copenhagen, Denmark.
⁹ Australian Centre for Behavioural Research in Diabetes, Melbourne, Australia.
¹⁰ La Trobe University, Bendigo, Australia.
¹¹ Institute of Medical Informatics, Charité-Universitätsmedizin Berlin, Berlin, Germany.

Abstract

Background: As a treatment option for people living with diabetes, automated insulin delivery (AID) systems are becoming increasingly popular. The #WeAreNotWaiting community plays a crucial role in the provision and distribution of open-source AID technology. However, while a large percentage of children were early adopters of open-source AID, there are regional differences in adoption, which has prompted an investigation into the barriers perceived by caregivers of children with diabetes to creating open-source systems.

Methods: This is a retrospective, cross-sectional and multinational study conducted with caregivers of children and adolescents with diabetes, distributed across the online #WeAreNotWaiting online peer-support groups. Participants-specifically caregivers of children not using AID-responded to a web-based questionnaire concerning their perceived barriers to building and maintaining an open-source AID system.

Results: 56 caregivers of children with diabetes, who were not using open-source AID at the time of data collection responded to the questionnaire. Respondents indicated that their major perceived barriers to building an open-source AID system were their limited technical skills (50%), a lack of support by medical professionals (39%), and therefore the concern with not being able to maintain an AID system (43%). However, barriers relating to confidence in open-source technologies/unapproved products and fear of digital technology taking control of diabetes were not perceived as significant enough to prevent non-users from initiating the use of an open-source AID system.

Conclusions: The results of this study elucidate some of the perceived barriers to uptake of open-source AID experienced by caregivers of children with diabetes. Reducing these barriers may improve the uptake of open-source AID technology for children and adolescents with diabetes. With the continuous development and wider dissemination of educational resources and guidance-for both aspiring users and their healthcare professionals-the adoption of open-source AID systems could be improved.

Keywords: access; automated insulin delivery; barriers; closed-loop; diabetes technology; digital innovation; health inequalities; human factors.