The impact of seizure frequency on quality of life in patients with Lennox-Gastaut syndrome or Dravet syndrome
| Autor: | Vidya Damera, Rowena Holland, Monique Martin, Kelly Simontacchi, Stéphane Auvin, Andrew Saich |
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| Rok vydání: | 2021 |
| Předmět: |
Adult
Pediatrics medicine.medical_specialty Adolescent Visual analogue scale Epilepsies Myoclonic Pilot Projects Behavioral Neuroscience Epilepsy Dravet syndrome Quality of life Seizures Cannabidiol Humans Medicine In patient Seizure frequency Lennox Gastaut Syndrome business.industry medicine.disease Cross-Sectional Studies Convulsive Seizures Neurology Quality of Life Anticonvulsants Neurology (clinical) business Spasms Infantile Lennox–Gastaut syndrome |
| Zdroj: | Epilepsy & Behavior. 123:108239 |
| ISSN: | 1525-5050 |
| Popis: | Objectives Lennox-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. Methods Surveys 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. Results Patient respondents were mainly treatment-responsive (n = 43/55) whereas caregiver respondents mainly cared for patients with treatment-resistant epilepsy (n = 38/43). Most respondents and patients were aged ≥18 years. Results from LGS and DS surveys in the UK (n = 58) and France (n = 40) 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 Conclusions Fewer seizures and additional seizure-free days improved QoL in patients with LGS or DS; seizure-free days had the greatest impact on QoL. |
| Databáze: | OpenAIRE |
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