Caregiver-reported meaningful change in functional domains for individuals with developmental and epileptic encephalopathy: A convergent mixed-methods design.
Jenny Downs, Sophie Haywood, Natasha N Ludwig and 7 others
PMID 40372822WHAT IT FOUND
Parents of children with severe developmental and epileptic encephalopathies prioritized small, functional steps like communicating pain or preferences and achieving independent sitting.
These specific changes were valued for reducing frustration and improving daily care, offering a concrete framework for setting realistic therapy goals.
Key findings
01Expressive communication was the most frequently identified priority domain (79.4%), followed by gross motor skills (38.6%) and receptive communication (27.3%).
02The most common meaningful changes desired were demonstrating preferences and expressing pain, hurt, or discomfort.
03Parents anticipated that achieving these meaningful changes would support the child's health, independence, and safety, while also reducing family stress and care burden.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The sample was a convenience sample recruited through advocacy groups, which may not represent the broader population of children with DEE. The study focused exclusively on children with severely impaired communication, limiting transferability to those with milder impairments. Researchers could not probe participants for clarification, and some responses were non-specific. Small numbers in specific genetic subgroups prevented analysis of differences between etiologies. The reliance on parent report means the findings reflect caregiver perspectives, not direct observation of child behavior or preference.
Declared interests
Funded by The Inchstone Project, the Stan Perron Charitable Foundation, and the Eunice Kennedy Shriver National Institute of Child Health & Human Development. The authors declared no conflicts of interest.
The easy way to misread this
Do not assume that these findings apply to children with milder developmental impairments. The study specifically selected for severe communication impairment, so the priorities and meaningful changes described may differ significantly for higher-functioning patients.
Summarised by AI from the full paper, without a clinician reviewing it. Check it against the source before it changes what you do. Read it on PubMed →