(Whittington MD, et al. 2018) The authors sent out an online survey to 60 caregivers whose patients with Dravet syndrome were treated at Children’s Hospital Colorado. The survey asked in-depth questions about how caring for an individual with Dravet syndrome has affected their family and work experience, and 34 caregivers responded.
The average direct health cost per patient was $27,276 annually, of which $11,565 was from hospitalizations and $9,894 was from in-home health care. However, when the authors took into account the indirect costs due to time lost from jobs for caregiving, the average total cost per patient was $106,378. This represents a significant burden on the family and should be studied further.