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

• Published in: Diabetes research and clinical practice 2023-02, Vol.196, p.110153-110153, Article 110153
• Main Authors: Knoll, Christine, Schipp, Jasmine, O'Donnell, Shane, Wäldchen, Mandy, Ballhausen, Hanne, Cleal, Bryan, Gajewska, Katarzyna A., Raile, Klemens, Skinner, Timothy, Braune, Katarina
• Format: Article
• Language: English
• Subjects: Adolescent; Automated insulin delivery; Caregivers - psychology; Child; Closed-loop; Cross-Sectional Studies; Diabetes Mellitus, Type 1; Humans; Insulins; Open source; Patient-reported outcomes; Psychological Well-Being; Quality of life; Quality of Life - psychology; Surveys and Questionnaires
• ISSN: 0168-8227; 1872-8227
• DOI: 10.1016/j.diabres.2022.110153

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. 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). 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