ArticleDevelopmental medicine and child neurology2025
Caregiver-reported meaningful change in functional domains for individuals with developmental and epileptic encephalopathy: A convergent mixed-methods design.
Article in Developmental medicine and child neurology, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers, 1 of them a synthesis that pooled it.
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Who cites it
8 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Systematic Review of Patient Focused Drug Development Meeting Reports for Conditions Affecting Neurodevelopment.Therapeutic innovation & regulatory science · 2026Pooled it
- The Burden of Epilepsy: The Contribution of Seizures (AES 2025 Presidential Symposium).Epilepsy currents · 2026Article
- Cognitive and behavioral clinical outcome assessments in children with developmental and epileptic encephalopathies: Issues and instruments.Epilepsia · 2026Review
- Trajectory of skill acquisition, loss, and regain in females with classic Rett syndrome.Journal of neurodevelopmental disorders · 2026Article
- Caregiver-reported quality of life in individuals with developmental and epileptic encephalopathy and other severe neurodevelopmental encephalopathies.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2026Article
- Trajectory of skill acquisition, loss, and regain in females with classic Rett syndrome.Research square · 2025Article
- Parent/caregiver perspectives of meaningful improvement in functional domains for people with CDKL5 deficiency disorder: a mixed-methods study.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2025Article
- Caregiver-reported meaningful change in functional domains for individuals with developmental and epileptic encephalopathy: A convergent mixed-methods design.Developmental medicine and child neurology · 2025Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
aimTo 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.
methodThis was a convergent mixed-methods design study. A survey was completed by 267 parents of children aged 12 months or older. For prioritized functional domains (communication, gross motor, fine motor, eating), parents reported the smallest improvement that would be important and explained why. Data were analyzed using directed content analysis and meaningful change codes were mapped to impairment levels.
resultsThe median age of the children was 8 years 8 months (interquartile range 4 years 2 months-14 years 6 months) and 149 (55.8%) were female. Content analysis yielded 86 meaningful change codes. Common codes described capacity to communicate preferences and emotions, gain sitting and walking skills, grasp objects for play, eat foods without choking, or using utensils. Some codes were reported for each impairment level (e.g. communicating needs/wants/likes for expressive communication); others were specific to an impairment level (e.g. gaining head control if unable to walk). Meaningful change was anticipated to affect health, independence and safety, care regimens, and quality of life of affected individual and families.
interpretationThe meaningful change codes indicate critical components within domains for evaluations in clinical trials.
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