PRO58 QUALITY OF LIFE IN PATIENTS WITH DRAVET SYNDROME OR LENNOX GASTAUT SYNDROME IN THE UK: HIGHER SEIZURE FREQUENCY HAS A SUBSTANTIAL NEGATIVE IMPACT ON QUALITY OF LIFE

Abstract

Dravet syndrome (DS) and Lennox Gastaut syndrome (LGS) are rare forms of epilepsy and studies exploring the relationship between seizure frequency and quality of life (QoL) are limited. This study aims to determine the QoL in individuals with DS and LGS. Online surveys were conducted, one for each indication, whereby patients and/or caregivers of patients with DS, LGS or epilepsy were asked to score vignettes for a hypothetical patient with DS or LGS. Respondents evaluated QoL for health states defined based on the number of seizures and seizure-free days per month, using a visual analogue scale (VAS) that ranged from 0 (‘worst health you can imagine’) to 100 (‘best health you can imagine’). The mean score associated with each health state was obtained by converting the VAS scores to the 0-1 scale (dividing by 100). The surveys were pilot tested prior to final launch and respondents were recruited from October - November 2018. Aggregated results from the LGS survey (n=30 respondents) showed that mean VAS scores increased with decreasing number of seizures and increasing number of seizure-free days, per month. from the LGS survey are as follows: no seizures: 0.833; ≤45 seizures and >15 seizure-free days: 0.559; ≤; >110 seizures and >15 seizure-free days: 0.458; >110 seizures and ≤3 seizure-free days: 0.235. Health state-specific means scores for the DS survey (n=28 respondents) and the health state-specific scores obtained are as follows: no seizures: 0.753; ≤8 seizures and >24 seizure-free days: 0.611; ≤8 seizures and >18 - ≤24 seizure-free days: 0.572; >25 seizures and >24 seizure-free days: 0.445; >25 seizures and >18 - ≤24 seizure-free days: 0.374. QoL in DS and LGS is influenced by both number of seizures and number of seizure-free days.