Oral Presentations

Abstract

Objective: Health- related quality of life (HRQOL) has emerged as a widely accepted measure to evaluate the impact of chronic disease on an individual’s physical, social, and mental well-being. There is a l ack of data focussing on HRQOL in specific epilepsy syndromes and their associated needs. Our aim was to identify areas of difficulty and dis- ease-related predic tors for HRQOL in Dravet syndrome. Method: One hundred and sixty-three in divi duals with Dra- vet syndrome and their families participated in the study. Detailed clinical and demographic information was avail- able from a standardized referral form. HRQOL was eval- uated with two epilepsy-specific instruments, the Impact of Pediatric Epilepsy Scale and the Epilepsy and Learning Disabilities Quality of Life scale, and two generic instru- ments, the Pediatric Quality of Life Inventory and the Strengths and Difficulties Questionnaire. Results: HRQOL was lower for children with Dravet syn - drome than a comparison group (46.8 vs 84.6; p<0.001) and was lower in older compared with younger age gr oups (32.4 vs 59.3; p<0.001). Overall 35% of children scored in the abnormal range for ‘conduct problems’ and 66% for ‘hyperactivity/inattention’. Young age at seizure onset (p=0.019), presence of myoclonic seizures (p=0.029), motor disorder (p=0.048), learning difficulties (p=0.002), epilepsy severity (p<0.001) and b ehavioural difficulties (p<0.001) each independently predicted poorer HRQOL, beha- vioural problems being the strongest predictor. Conclusions: HRQOL in Dravet synd rome depends on sev- eral independent factors including seizure control, beha- viour, cognitive, and motor problems. This illustrates how a well-defined epilepsy syndrome will require a distinct multidimensional approach to treatment in order to address specific needs.