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Caregiver-reported meaningful change in functional domains for individuals with developmental and epileptic encephalopathy: A convergent mixed-methods design

To investigate how caregivers of children with developmental and epileptic encephalopathy and severe developmental impairments describe meaningful change for functional domains and why it is important.

Citation:
Downs J, Haywood S, Ludwig NN, Wojnaroski M, ……. Keeley J, Berg AT. Caregiver-reported meaningful change in functional domains for individuals with developmental and epileptic encephalopathy: A convergent mixed-methods design. Dev Med Child Neurol. 2025.

Keywords:
Child disability; caregiver; epilepsy; encephalopathy

Abstract:
To investigate how caregivers of children with developmental and epileptic encephalopathy and severe developmental impairments describe meaningful change for functional domains and why it is important.