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

Developmental Medicine & Child Neurology, Journal Year: 2025, Volume and Issue: unknown

Published: May 15, 2025

Abstract Aim To investigate how caregivers of children with developmental and epileptic encephalopathy severe impairments describe meaningful change for functional domains why it is important. Method This was a convergent mixed‐methods design study. A survey completed by 267 parents aged 12 months or older. For prioritized (communication, gross motor, fine eating), reported the smallest improvement that would be important explained why. Data were analyzed using directed content analysis codes mapped to impairment levels. Results The median age 8 years (interquartile range 4 2 months–14 6 months) 149 (55.8%) female. Content yielded 86 codes. Common described capacity communicate preferences emotions, gain sitting walking skills, grasp objects play, eat foods without choking, utensils. Some each level (e.g. communicating needs/wants/likes expressive communication); others specific an gaining head control if unable walk). Meaningful anticipated affect health, independence safety, care regimens, quality life affected individual families. Interpretation indicate critical components within evaluations in clinical trials.

Language: Английский

Cyclin-Dependent Kinase-Like 5 Deficiency Disorder: A Calcium Channelopathy?

Epiliepsy currents/Epilepsy currents, Journal Year: 2024, Volume and Issue: 24(3), P. 191 - 193

Published: April 30, 2024

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Language: Английский