The humanistic and economic burden of Dravet syndrome on caregivers and families: Implications for future research

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(Jensen, et al. 2017). A team of physicians from Washington, the United Kingdom, Colorado, and Zogenix, Inc. reviewed the published literature on the burden of Dravet syndrome (DS) on caregivers and families. Instead of examining diagnostic criteria, treatment/management, seizure control, etc., they looked specifically for how DS affects the caregiver and families both humanistically and economically. They found that, despite over 500 peer-reviewed articles on DS, only six addressed these caregiver burdens, three of which presented different aspects of data collected from a single study.

The caregiver concerns presented in the articles include sleep problems, stress, depression, ongoing anxiety and fear, disruptions/changes in careers, and relationship disruptions, similar to those found in caregivers of children with epilepsy but not DS specifically. There was no attempt to rank caregiver concerns or measure their frequency or severity in relation to those found with general epilepsy diagnoses, and the authors urge researchers to address this gap in knowledge.

In terms of the economic burden of DS, one German study showed that there were significant direct financial costs of between $13,000 and $14,500 USD in a given year. Because costs vary  widely among different countries, the results of that study are not necessarily generalizable to other areas of the world. In the US, the direct costs of epilepsy (not necessarily DS) ranged from $1022 to $19,749 in one year in one study, somewhat in line with the German study, although the two health care systems are not comparable and the costs associated with caring for a child with DS would be expected to be much higher than those associated with caring for a child with a mere epilepsy diagnosis. The literature review produced no studies on the indirect costs associated with DS. These would include lost work days, a parent needing to stop working partially or completely to care for the patient, lost productivity due to lack of sleep, specialized caregivers needed to watch the patient, etc. As a result of the extreme lack of data in this area, the authors urge research into the economic and humanistic burden on caregivers in Dravet syndrome in order to identify the prioroties of caregivers, identify or develop tools that would measure impact in this area, identify the factors that influence DS caregiving burden, evaluate the efficacy of treatments on their contribution to or alleviation of caregiver burden, quantify the direct and indirect costs of DS.

Jensen MP, Brunklaus A, Dorris L, Zuberi SM, Knupp KG, Galer BS, Gammaitoni AR. The humanistic and economic burden of Dravet syndrome on caregivers and families: Implications for future research. Epilepsy Behav. 2017 Apr 17;70(Pt A):104-109. doi: 10.1016/j.yebeh.2017.02.003. [Epub ahead of print] Review. PubMed PMID: 28431364.
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