Awareness drives willingness: Results of the ISPAD JENIOUS-PREME T1D project on parents' perspectives on disease-modifying therapy in T1D.

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.