OBJECTIVES : Dravet Syndrome (DS) is a rare, treatment-resistant epileptic disorder. Patients have frequent, debilitating seizures; as well as neurodevelopmental and motor impairments. Real world data regarding DS is sparse providing little insight into patient reported outcomes. The main objective of this study was to examine the impact of seizures on quality of life (QoL) of DS patients.

METHODS : This was a multi-centre cross-sectional study in France, using questionnaires completed by physicians (neurologists with an interest in epilepsy) and DS patients or a proxy (parent or carer). A multivariate linear regression model was built to examine the association between number of patient-reported seizures in the last month and EQ-5D-5L index value after adjusting for other confounding factors. Separate models were constructed for continuous and categorical (0-1; 2; 3; 4-5; >5) number of seizures.

RESULTS : EQ-5D-5L instrument was completed for 86 patients, with mean age of 9.9 [SD=4.9] years old (range: 1 to 18), 72.1% male, and mean number of treatments for DS of 1.8 (SD=0.9) in the last 12 months. After adjusting for current age, presence of motor impairment, learning difficulties, autism and cardio-neuro-vascular chronic conditions, patients with one more seizure in the last month had a lower EQ-5D-5L index value (p<0.001). With each additional seizure experienced by the patient, EQ-5D-5L index value decreased by 1.3% as compared to patients with no seizures in the last month. Additionally, the model with categorical definition showed that patients with 0 or 1 seizure had 37.8% higher EQ-5D-5L index value (p<0.001) compared to patients with more than 5 seizures in the last month.

CONCLUSIONS : In both univariate and multivariate analyses (after adjusting for several confounding factors), DS patients with the higher seizure frequency in the last month had a lower QoL, which could be suggestive of unmet need in treatment and health care.