(Campbell JD, et al. 2018) This is the second part of the survey described in the last review, in which 30 caregivers of patients with Dravet syndrome treated at Children’s Hospital Colorado responded to questions regarding the impact of caring for their patients. In this part, the authors describe anxiety/depression and discomfort/pain as the greatest impacts on caregivers. Interestingly, those who spent a larger amount of time managing behavior and assisting with walking were more likely to report lower general health, suggesting motor impairment and neurodevelopmental problems impact caregivers significantly. Caregivers reported missing work often, switching or quitting jobs, and attending several outpatient visits per year.

Campbell JD, Whittington MD, Kim CH, VanderVeen GR, Knupp KG, Gammaitoni A. Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey. Epilepsy Behav. 2018 Mar;80:152-156. doi: 10.1016/j.yebeh.2018.01.003. Epub 2018 Feb 2. PubMed PMID: 29414545.