Dravet Caregivers Need Enhanced Support, Recent Survey Shows

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by Alice Melao |

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Caring for patients with Dravet syndrome places significant physical, emotional and time burdens on caregivers. Supportive services for Dravet families are necessary to improve not only the patients’ outcomes, but also to enhance caregivers’ quality of life, according to a recent survey.

The study, “Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey,” was published in Epilepsy & Behavior.

Even with combination therapy, obtaining substantial seizure reduction or seizure-freedom is rare. This greatly affects children with Dravet syndrome and their caregivers. The lack of medical literature regarding treatment of the associated characteristics of Dravet, like accompanying developmental and behavioral issues, also has an impact.

To further identify and quantify the factors affecting the well-being of caregivers of children with Dravet, University of Colorado Anschutz Medical Campus researchers, in collaboration with Zogenix, surveyed 34 caregivers of Dravet patients who ranged in age from 2 to 22 years.

The survey revealed that many aspects of caregivers’ lives are affected in terms of difficulty and time spent. Providing transportation, personalized care, and additional household tasks required the greatest caregiver time commitment. Arranging for child care, communication, and managing behavioral problems presented the greatest difficulty.

Finding ways to coordinate their personal and professional lives with all healthcare needs of their Dravet patient, including hospital visits, outpatient visits and in-home visits, represented a great burden for the caregivers.

About 65 percent of survey respondents reported switching jobs, quitting jobs, or losing a job due to caregiving responsibilities.

Areas with the greatest impact on caregivers were anxiety/depression, and discomfort or pain. Assessment of the caregivers’ quality of life revealed a mean score of 67, in a scale where 0 represents death and 100 perfect health. This finding indicates that Dravet caregivers have significantly reduced quality of life compared to the general population.

Those with lower quality-of-life scores were two to four times more likely to report increased time and difficulty managing their Dravet child behavior problems and assisting them with walking. This suggests that extension of motor and neurodevelopmental problems are critical factors contributing for caregivers’ health.

“Caring for patients with Dravet syndrome exerts physical, emotional, and time burdens on caregivers,” researchers wrote. “These findings highlight the unmet need for better, more comprehensive treatments for Dravet as well as potential areas for which supportive services would be helpful in reducing the overall impact on caregivers,” they added.