Aims and objectives. This study aims to describe behavioural aspects, cognition, and epilepsy course and identify predictors for Quality of Life (QoL) in adolescents and adults two to ten years...Show moreAims and objectives. This study aims to describe behavioural aspects, cognition, and epilepsy course and identify predictors for Quality of Life (QoL) in adolescents and adults two to ten years after achieving remission from epileptic encephalopathy with spike-wave activation in sleep (EE-SWAS). Background. Children with EE-SWAS, a childhood epilepsy syndrome, often experience neurodevelopmental arrest or regression, which consists of a heterogeneous combination of behavioural and cognitive deficits. Three-quarters of the patients in EE-SWAS remission have permanent deficits. Long-term follow-up studies are scarce but suggest a relation between the aetiology, EE-SWAS duration, and use of corticosteroid treatment with neurodevelopmental outcome of patients in remission. Design. This study utilised a cross-sectional observational design with questionnaires and retrospective data collection. Methods. Parents or caregivers of patients digitally filled out the Epilepsy Questionnaire and the Quality of Life in Childhood Epilepsy Questionnaire-55 (QOLCE-55). Results. A total of 35 adolescents and adults with a mean age of 18.2 (SD±3.76) years were included in the statistical analysis. The participants consisted of 18 male and 17 female adolescents and adults who were in ≥ 2 years in EE-SWAS remission. An established aetiology occurred in 19 participants, the median EE-SWAS duration was 4.3 (IQR 2.0-7.0) years, and 13 participants received corticosteroid treatment. The mean QOLCE-55 score for the sample size was 50.0 (SD±16.97). A significant difference of 10.3 points between the means of the QOLCE-55 score of patients with an established (M=45.3, SD±16.20) and an unknown (M=55.6, SD±16.65) aetiology has been found (t=1.841, df=33, p=.038). No difference was found in the QOLCE-55 means between patients with and without corticosteroid treatment (t=0.831, df=33, p=.226). Moreover, no correlation was found between the EE-SWAS duration and QOLCE-55 scores (ρ= -.298, p=.052 (n=31). No statically significant predictors of the QOLCE-55 scores were found in the multivariate regression analysis with an established aetiology (B=-4.5, p=.430), duration (B=-0.1, p=.108), and corticosteroid treatment (B=3.2, p=.595). Conclusions. Although no statistically significant predictors of QoL in EE-SWAS remission in adolescents and adults were found, an established aetiology and longer duration of EE-SWAS showed a potential trend as predictors of a poorer QoL. The study’s findings confirm the presence of cognitive deficits experienced in EE-SWAS remission, aligning with previous literature.Show less
