PND88 - DESCRIBING REAL WORLD TREATMENT PATTERNS IN PAEDIATRIC DRAVET SYNDROME PATIENTS IN DENMARK USING ELECTRONIC MEDICAL RECORDS

Dravet Syndrome (DS) is a rare developmental and epileptic encephalopathy generally manifesting itself in the first year of life. Seizures are often prolonged and refractory to treatment with antiepileptic drugs (AED). Treatment patterns therefore vary across patients and longitudinally due to evolving disease severity. This analysis aimed to investigate the real-world treatment patterns of paediatric DS patients in Denmark using EMR data and describe their historical AED use, switching patterns, and the frequency and time on therapy for common drug combinations. A retrospective EMR analysis was performed at the Danish Epilepsy Centre, Filadelfia, a specialist epilepsy hospital in Denmark, on known paediatric patients identified using established diagnostic criteria. The study population included currently diagnosed patients born between 2002-2017 followed at the hospital with available treatment data (N=28). Individual patient records were interrogated to extract longitudinal, itemized data on prescribed therapies. Use of 27 different AEDs were recorded. Most patients (66%) aged 1-3 years were on a dual therapy, while triple therapy was most common for patients 4-6 years old (75%), and 7-12 years old (44%). Current quadruple therapy was only observed in 7-12 years old (33%). Newly diagnosed patients ≤2 years old most often initiated treatment with a monotherapy (64%), followed by dual therapy (25%), and triple therapy (11%). Valproate and stiripentol in combination where the most common dual therapy across age groups, while triple therapy frequently consisted of a stiripentol and valproate or clobazam backbone with cycling in the third agent. The mean cumulative number of different AEDs tried increased gradually with age and plateaued at approximately 8 drugs at 9 years old. As no single combination offers sustained control across DS patients, treatment is largely empirical, with physicians balancing the seizure control effectiveness, AED burden, and side effect profile of combinations as patients progress.