Stefano Passanisi, Claudia Piona, Agata Chobot, Laura Cudizio, Apoorva Gomber, Bastian Hauck, Nathalie Bauer, Ana Alvarez Pagola, Manuela Battaglia, Linda A DiMeglio
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引用次数: 0
Abstract
Aims: To evaluate global caregivers' knowledge, perceptions and willingness to consider disease-modifying therapies for the prevention of clinical onset of type 1 diabetes.
Methods: An online survey was translated into 13 languages and disseminated worldwide from June 2024 to February 2025 to parents and caregivers of youth living with type 1 diabetes.
Results: Among 1281 respondents from 50 countries, awareness of available disease-modifying therapies was low, while the perceived importance of delaying clinical disease onset was high. Reflecting this limited knowledge, only 31% expressed unconditional willingness to accept disease-modifying treatments. Willingness to accept treatment was associated with higher educational attainment, residence in high-income countries and prior knowledge of these therapies. Safety concerns, route of administration and limited information were major barriers.
Conclusion: Informational and socioeconomic barriers to caregivers' awareness and acceptance of disease-modifying therapies may hinder the equitable implementation of preventive immunotherapy, highlighting the need for accessible, multilingual education initiatives.
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