(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.

Whittington MD, Knupp KG, Vanderveen G, Kim C, Gammaitoni A, Campbell JD. The direct and indirect costs of Dravet Syndrome. Epilepsy Behav. 2018 Mar;80:109-113. doi: 10.1016/j.yebeh.2017.12.034. Epub 2018 Feb 2. PubMed PMID: 29414539