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Research paper
Psychological and quality-of-life outcomes in DEE-SWAS
Quality-of-life assessment in children with DEE-SWAS across cognitive, behavioral, educational, and family-functioning domains.
Indexed context
Sahu JK, et al.
dee-swasquality-of-lifepediatricoutcomes2026
Markdown path
content/research/papers/2026-sahu-qol-dee-swas.mdFindings
Quality-of-life assessment in children with DEE-SWAS across cognitive, behavioral, educational, and family-functioning domains.
Why it may matter for Levi
Supports framing Levi's care around QoL outcomes rather than only seizure freedom. Reinforces Zaldumbide-Alcocer 2024 and Tapia 2024 rehabilitation emphasis already in the corpus.
Paper text
Sahu et al. (2026) — Psychological and QoL outcomes in DEE-SWAS
Source
- Epilepsy Research, 2026.
Why in corpus
Documents the psychological and quality-of-life burden of DEE-SWAS on patients and families. Relevant for family-centered care discussions.
Key findings
- Psychological and QoL outcomes in DEE-SWAS are meaningfully worse than control populations.
- Substantial burden on both patients and families, often underrecognized in clinical encounters focused primarily on seizure count.
- Argues for routine QoL assessment as part of DEE-SWAS care.
Levi-relevant takeaways
- Normalizes and quantifies the burden Jake and Miki are experiencing; useful framing for caregiver-support conversations.
- Supports the inclusion of family psychological-support resources in Levi's care plan — complementary to Levi's own therapy stack.
- Reinforces that measuring outcomes should extend beyond SWI and seizure count to functional and quality-of-life measures, consistent with the treatments-rank emphasis on developmental function as the primary outcome.