Psychological and health-related quality of life outcomes in children with developmental and epileptic encephalopathy with spike-wave activation in sleep (D/EE-SWAS): A single-center prospective study.
Sahu A, Sharma R, Lal G, Saini A • Epilepsy research • 2026
Children with D/EE-SWAS experience substantial impairment in health-related quality of life, particularly in physical and social domains, with neurodevelopmental status, functional participation, epilepsy severity, and behavioral difficulties identified as key determinants.
Key Findings
Results
Children with D/EE-SWAS had a mean overall HRQoL score of 60.7 out of 100, with the lowest scores in physical functioning and highest in emotional functioning.
Mean overall QOLCE-55 score was 60.7 ± 22.3 (range 12–94)
Domain-wise scores were highest for emotional functioning (70.9 ± 17.3)
Physical functioning had the lowest domain score (40.4 ± 24.4)
46 children aged 4–18 years were included (29 males, 63%); mean age at assessment was 11 years (range 5–17 years)
17 children (37%) were classified as DEE-SWAS and 29 children (63%) as EE-SWAS
Results
Children with structural etiology had significantly lower HRQoL compared to those with idiopathic etiology.
Structural etiology mean QOLCE-55 score: 49.4 ± 18.6 vs. idiopathic etiology: 74.1 ± 18.8
Difference was statistically significant (p < 0.001)
Etiology was among the clinical variables analyzed for associations with HRQoL
Results
Earlier age at seizure onset was significantly associated with lower HRQoL.
Spearman correlation coefficient ρ = 0.53, p < 0.001, indicating that earlier onset was associated with poorer quality of life
This was among the strongest univariate associations with HRQoL identified in the study
Results
Pre-existing developmental delay was associated with significantly lower HRQoL scores.
Children with pre-existing developmental delay had a mean QOLCE-55 score of 46.2 ± 20.3 vs. 69.2 ± 19.0 in those without (p < 0.001)
Baseline developmental delay was also identified as an independent predictor of HRQoL in multivariable analysis
Results
Microcephaly and abnormal speech were each significantly associated with lower HRQoL.
Microcephaly was associated with lower HRQoL (p = 0.001)
Abnormal speech was associated with lower HRQoL (p = 0.001)
Both variables were among the clinical and developmental factors analyzed
Results
Higher epilepsy severity, as measured by the E-CHESS score, was significantly associated with lower HRQoL.
Spearman correlation coefficient ρ = -0.37, p = 0.01, indicating that greater epilepsy severity correlated with poorer HRQoL
Epilepsy severity (E-CHESS score) was also identified as an independent predictor in multivariable regression
Results
Schooling status was strongly associated with HRQoL, with children attending regular school having significantly higher scores.
Children attending regular school had a mean QOLCE-55 score of 79.6 ± 15.0
Children with delayed schooling scored 56.4 ± 16.9
Children who had dropped out of school scored 40.7 ± 18.2 (p < 0.001 across groups)
Schooling status was identified as an independent predictor of HRQoL in multivariable analysis
Results
Behavioral difficulties were common in children with D/EE-SWAS and were strongly associated with poorer HRQoL.
Mean SDQ total difficulties score was 13.3 ± 7.4
Higher SDQ total, internalizing, externalizing, and impact scores were all significantly associated with lower HRQoL (all p < 0.001)
Behavioral difficulties were assessed using the Strengths and Difficulties Questionnaire (SDQ)
Results
In multivariable regression, schooling status, baseline developmental delay, and epilepsy severity independently predicted HRQoL, together accounting for 60% of the variance.
These three variables were identified as independent predictors of HRQoL
The model accounted for 60% of the variance in QOLCE-55 scores
Multivariable regression was performed to identify independent predictors among clinical, developmental, and epilepsy-related variables
What This Means
This research suggests that children with a condition called developmental and epileptic encephalopathy with spike-wave activation in sleep (D/EE-SWAS) — a type of epilepsy that affects brain development and causes abnormal brain activity during sleep — have significantly reduced quality of life compared to healthy children. The study followed 46 children aged 5 to 17 years in a single center and found that, on average, these children scored about 61 out of 100 on a standardized quality-of-life measure, with particularly low scores in physical functioning and social participation. Children with brain structural abnormalities, those who developed seizures earlier in life, and those with pre-existing developmental delays fared considerably worse than others.
The research also found that behavioral problems were very common in this group, and children with more behavioral difficulties had worse quality of life across multiple dimensions. One of the most striking findings was the strong link between schooling status and quality of life: children attending regular school had much higher scores than those who had fallen behind or dropped out entirely. When all factors were analyzed together, three variables — schooling status, pre-existing developmental delay, and epilepsy severity — independently explained 60% of the differences in quality of life among children in the study.
This research suggests that managing D/EE-SWAS effectively requires much more than just controlling seizures. Supporting children's ability to attend school, addressing behavioral difficulties, and providing early neurodevelopmental support may be just as important for their overall wellbeing. The findings highlight the need for multidisciplinary care teams — including educators, psychologists, and therapists — working alongside neurologists to improve the lives of children with this condition.
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Sahu A, Sharma R, Lal G, Saini A. (2026). Psychological and health-related quality of life outcomes in children with developmental and epileptic encephalopathy with spike-wave activation in sleep (D/EE-SWAS): A single-center prospective study.. Epilepsy research. https://doi.org/10.1016/j.eplepsyres.2026.107794