Epilepsy & Behavior | 2021
The impact of seizure frequency on quality of life in patients with Lennox-Gastaut syndrome or Dravet syndrome
Abstract
OBJECTIVES\nLennox-Gastaut syndrome (LGS) and Dravet syndrome (DS) are rare treatment-resistant epileptic encephalopathies with limited data describing the relationship between seizures and quality of life (QoL). The objective of this cross-sectional pilot study was to assess the impact on QoL of seizures and seizure-free days for the generation of utility values.\n\n\nMETHODS\nSurveys were conducted in the UK and France, whereby patients and/or caregivers of patients with LGS, DS, or other epilepsies were asked to score health state vignettes for a hypothetical patient with LGS or DS. Respondents evaluated QoL for health states based on the number of seizures and seizure-free days per month, using a visual analog scale (VAS). Visual analog scale scores were converted to the 0-1 scale as a proxy estimate for utility values. Surveys were pilot tested and respondents were recruited from October 2018 to August 2019.\n\n\nRESULTS\nPatient respondents were mainly treatment-responsive (n\u202f=\u202f43/55) whereas caregiver respondents mainly cared for patients with treatment-resistant epilepsy (n\u202f=\u202f38/43). Most respondents and patients were aged ≥18\u202fyears. Results from LGS and DS surveys in the UK (n\u202f=\u202f58) and France (n\u202f=\u202f40) suggested that health states with fewer seizures and more seizure-free days had higher QoL scores for hypothetical patients. For DS, QoL scores for patient health states ranged from 0.20 (32 convulsive seizures and 4 seizure-free days/month, UK) to 0.92 (seizure-free, France). For LGS, scores ranged from 0.14 (130 drop seizures and 1 seizure-free day/month, France) to 0.83 (seizure-free, UK). In all surveys, seizure-free days had a greater impact on QoL than seizure frequency (P\u202f<\u202f0.001).\n\n\nCONCLUSIONS\nFewer seizures and additional seizure-free days improved QoL in patients with LGS or DS; seizure-free days had the greatest impact on QoL.