TY - JOUR
T1 - Quality of life and psychological well-being among children and adolescents with diabetes and their caregivers using open-source automated insulin delivery systems
T2 - Findings from a multinational survey
AU - Knoll, Christine
AU - Schipp, Jasmine
AU - O'Donnell, Shane
AU - Wäldchen, Mandy
AU - Ballhausen, Hanne
AU - Cleal, Bryan
AU - Gajewska, Katarzyna A.
AU - Raile, Klemens
AU - Skinner, Timothy
AU - Braune, Katarina
N1 - Publisher Copyright:
© 2022
PY - 2023/2
Y1 - 2023/2
N2 - 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.
AB - 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.
KW - Automated insulin delivery
KW - Closed-loop
KW - Open source
KW - Patient-reported outcomes
KW - Quality of life
UR - http://www.scopus.com/inward/record.url?scp=85145991420&partnerID=8YFLogxK
U2 - 10.1016/j.diabres.2022.110153
DO - 10.1016/j.diabres.2022.110153
M3 - Journal article
C2 - 36423699
AN - SCOPUS:85145991420
VL - 196
JO - Diabetes Research and Clinical Practice
JF - Diabetes Research and Clinical Practice
SN - 0168-8227
M1 - 110153
ER -