Caregivers’ experiences and challenges of the diagnostic odyssey in Dravet syndrome

Abstract excerpt

BACKGROUND: Although the genetic background of Dravet syndrome (DS) has been determined and is clearly described, and genetics tests that support a clinical diagnosis are available, DS diagnosis is often based on the clinical assessment alone, which may lead to a late or missed diagnosis. This study explores experiences of caregivers' of persons with DS with the diagnostic odyssey and their perception of its...

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