Journal article

Perception of impact of Dravet syndrome on children and caregivers in multiple countries: looking beyond seizures

Rima Nabbout, Stephane Auvin, Catherine Chiron, Elizabeth Thiele, Helen Cross, Ingrid E Scheffer, Amy L Schneider, Renzo Guerrini, Nicola Williamson, John Irwin, Arun Mistry, Nicola Williamson, Rebecca Grimes, Bryan Bennett

Developmental Medicine & Child Neurology | WILEY | Published : 2019

Abstract

AIM: To assess the relevance and generalizability across countries of concepts of the impact of Dravet syndrome beyond seizures, as recognized by families. METHOD: Caregivers of children with Dravet syndrome in four countries (Australia [n=8]; USA, UK, and Italy [all n=4]) participated in 1-hour qualitative telephone interviews, identifying key Dravet syndrome concepts. Interviews were recorded, transcribed, and, where necessary, translated into English for thematic analysis. Conceptual saturation was assessed and findings compared to the previously developed French conceptual disease model. RESULTS: The most common seizure types reported by caregivers were tonic-clonic, absence, or focal-im..

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