Aquarius Population Health

Dravet syndrome (DS) is a rare, early onset, lifelong, epileptic encephalopathy characterised by frequent and severe convulsive seizures. The often-daily seizure episodes are associated with cognitive, motor, behavioural, and sleep impairments with substantial impairment and burden to the health-related quality of life (HRQoL) of patients, primary caregivers and family members.

This study explored the impact of increasing seizure free days (SFDs) on patients’ and carers’ HRQoL and examined and quantified the impact of clinical and epidemiological covariates to understand which factors may predict DS patient and carer HRQoL. The results showed that SFDs have a significant impact on QoL for both patients and carers; this suggests that treatment options that increase SFD can substantially impact both DS patients’ and carers’ QoL.


Pinsent A, Weston G, Adams EJ, Linley W, Hawkins N, Schwenkglenks M, Hamlyn Williams C, Toward T. Determining the Relationship of Seizures, Seizure Free Days and Other Predictors of Health Related Quality of Life in Patients with Dravet Syndrome (DS) and Their Carers. Presented at: International Society for Pharmacoeconomics and Outcomes Research (ISPOR) 2021 Congress, May 17 – 20, 2021; Virtual

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