Abstract
Objective: The aim of our study is to explore the complexity of antiepileptic drugs (AEDs) combined therapy in patients with Dravet syndrome (DS) with a special interest in management of the families concerning preparation and administration. Methods: We directed this survey using anonymous, self-administered questionnaire. Results: 92 families answered the questionnaire. Patients were aged from 1.73 to 17.60 years (mean 8.12). 92% of children had at least 3 AEDs: clobazam, valproate, stiripentol and topiramate. Other medications were also used for sleep and behavioral disorders. Mothers (100%), fathers (84%) and grandparents (52%) prepared the drugs and administered it respectively in 100%, 94% and 59% of patients. 31% estimated a major risk of error because of the drug manipulation. 75% agreed on the facility of preparation and administration but they were unhappy with the texture and flavour of medicines. 11% of parents didn't know the side effect of administered medications. 71% of parents refer to their specialist for side effects and their GP for drug interactions. Conclusion: This study raises the difficulties faced by families with children with DS having AEDs polytherapy. Parents estimated a high risk of error and problems with texture and flavors. These results emphasise the need for further development of children friendly formula and education for families with rare and chronic diseases.
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