Quality of life and psychological well-being among children and adolescents with diabetes and their caregivers using open-source automated insulin delivery systems: Findings from a multinational survey. (February 2023)

• Record Type: Journal Article
• Authors: Knoll, Christine; Schipp, Jasmine; O'Donnell, Shane; Wäldchen, Mandy; Ballhausen, Hanne; Cleal, Bryan; Gajewska, Katarzyna A.; Raile, Klemens; Skinner, Timothy; Braune, Katarina
• Is Part Of: Diabetes research and clinical practice. Volume 196(2023)
• Publication Date: 2023-02
• Subjects: Automated insulin delivery -- Closed-loop -- Open source -- Patient-reported outcomes -- Quality of life; Diabetes -- Periodicals; Diabetes Mellitus -- Periodicals; 616.462
• DOI: 10.1016/j.diabres.2022.110153
• Languages: English
• ISSNs: 0168-8227

Abstract

Abstract: Background: Open-source automated insulin delivery (AID) systems have shown to be safe and effective in children and adolescents with type 1 diabetes (T1D) in real-world studies. However, there is a lack of evidence on the effect on their caregivers' quality-of-life (QoL) and well-being. The aim of this study was to assess the QoL of caregivers and children and adolescents using open-source AID systems using validated measures. Methods: In this cross-sectional online survey we examined the caregiver-reported QoL and well-being of users and non-users. Validated questionnaires assessed general well-being (WHO-5), diabetes-specific QoL (PAID, PedsQL) and sleep quality (PSQI). Results: 168 caregivers from 27 countries completed at least one questionnaire, including 119 caregivers of children using open-source AID and 49 not using them. After inclusion of covariates, all measures but the PAID and one subscale of the PedsQL showed significant between-group differences with AID users reporting higher general (WHO-5: p = 0.003), sleep-related (PSQI: p = 0.001) and diabetes-related QoL (PedsQL: p < 0.05). Conclusions: The results show the potential impact of open-source AID on QoL and psychological well-being of caregivers and children and adolescents with T1D, and can therefore help to inform academia, regulators, and policymakers about the psychosocial health implications of open-source AID.