School attendance the strongest predictor of health-related quality of life
This study is one of the first to look specifically at quality of life in children with DEE-SWAS and EE-SWAS using a validated epilepsy quality-of-life measure.
The researchers found that many children experienced significant challenges in everyday life. Physical functioning was the area most affected, while emotional wellbeing was generally less affected. Difficulties with social participation and cognitive functioning were also common.
Behavioural challenges were frequently reported. Many children had difficulties with peer relationships, emotional wellbeing and day-to-day functioning. Children with more behavioural and emotional difficulties generally had poorer quality of life scores across all areas measured.
The researchers also explored which factors were associated with quality of life. Lower quality of life was linked with earlier seizure onset, developmental delays that were present before SWAS emerged, structural causes of epilepsy, speech difficulties, microcephaly and greater epilepsy severity.
One of the most interesting findings was the relationship between education and quality of life. Children attending regular school had higher quality-of-life scores than children whose schooling was delayed or who were no longer attending school. In the statistical analysis, schooling status was the factor most strongly associated with quality of life.
Importantly, this does not mean that school attendance itself causes better quality of life. Rather, school participation may reflect a range of factors that contribute to wellbeing, including cognitive abilities, communication skills, behavioural regulation, social participation and access to everyday childhood experiences.
For families, this finding might resonate. While seizures and EEGs remain important, they are only part of the picture. Parents often talk about how well their child is learning, communicating, participating in school, building relationships and enjoying life. These everyday experiences may matter just as much to families as seizure counts or EEG findings, and this study highlights how closely they are linked to quality of life.
The study adds to growing evidence that outcomes in DEE-SWAS should be measured using more than seizure counts and EEG findings alone. Understanding how children are functioning in everyday life may be just as important.
Study recommendations
“These findings underscore the necessity of comprehensive multidisciplinary management that extends beyond seizure control, incorporating routine behavioral screening with the SDQ and targeted developmental, educational, and psychological interventions to optimize long-term functional outcomes.”
Link to article
Sahu A, Sharma R, Lal G, Saini AG. 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, 2026.