Dataset Information

The social and emotional burden of Dravet syndrome on Spanish caregivers.

ABSTRACT:

Background

Dravet syndrome (DS) is a rare developmental and epileptic encephalopathy that presents with frequent and prolonged seizures resistant to treatment as well as cognitive problems such as behavioral and developmental delays. However, there is a lack of scientific literature on the impact of this condition on caregivers and the family unit.

Objectives

To find out the social and emotional impact of DS on the family unit, to provide a comprehensive understanding of the disease's effects on both the family and caregivers.

Materials and methods

A tailored online survey was administered to Spanish DS families, collecting data on the employment, financial, emotional, and social status of patients and caregivers.