A retrospective review of changes and challenges in the use of antiseizure medicines in Dravet syndrome in Norway

Abstract Objective Dravet syndrome is a developmental and epileptic encephalopathy characterized by severe and drug‐resistant seizures in early childhood, followed by developmental delay. The purpose of this study was to investigate aspects of pharmacological treatment of Norwegian patients with Dra...

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Main Authors: Katrine Heger, Caroline Lund, Margrete Larsen Burns, Marit Bjørnvold, Erik Sætre, Svein I. Johannessen, Cecilie Johannessen Landmark
Format: Article
Language:English
Published: Wiley 2020-09-01
Series:Epilepsia Open
Subjects:
Online Access:https://doi.org/10.1002/epi4.12413
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author Katrine Heger
Caroline Lund
Margrete Larsen Burns
Marit Bjørnvold
Erik Sætre
Svein I. Johannessen
Cecilie Johannessen Landmark
author_facet Katrine Heger
Caroline Lund
Margrete Larsen Burns
Marit Bjørnvold
Erik Sætre
Svein I. Johannessen
Cecilie Johannessen Landmark
author_sort Katrine Heger
collection DOAJ
description Abstract Objective Dravet syndrome is a developmental and epileptic encephalopathy characterized by severe and drug‐resistant seizures in early childhood, followed by developmental delay. The purpose of this study was to investigate aspects of pharmacological treatment of Norwegian patients with Dravet syndrome, focusing on the use of antiseizure medicines (ASMs) and identifying treatment challenges. Methods Patients were identified through medical registries at the National Center for Epilepsy in Norway and National Center for Rare Epilepsy Related Disorders during 2008‐2018. Additional clinical data were obtained from medical records and laboratory request forms. Results We identified 53 patients with Dravet syndrome, 30/23 males/females, aged 2‐50 years. The majority of patients with known seizure frequency experienced frequent seizures, 80% (n = 35/44). Only two patients were seizure‐free. Valproate (n = 48), clobazam (n = 45), levetiracetam (n = 30), and stiripentol (n = 38) were most commonly used, previous or current use. More than one‐third (n = 20) had tried sodium channel blockers (including lamotrigine), but these drugs were used less during the last decade. Polytherapy was common, 81% (n = 43) used two or more ASMs, and eight of these patients used 4‐5 drugs (15%). Several challenges were identified: high seizure frequency, comorbidities, treatment changes with a wide range of ASMs, common use of oral gastro‐tubes, extensive polypharmacy, and drug interactions. Significance The use of ASMs has changed over the last decade, in accordance with updated international recommendations. Various treatment challenges were identified. This vulnerable group of patients needs close follow‐up for an optimal treatment outcome.
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spelling doaj.art-caa4f57cd25b41f889fce74ab7eb9dec2022-12-21T23:54:14ZengWileyEpilepsia Open2470-92392020-09-015343244110.1002/epi4.12413A retrospective review of changes and challenges in the use of antiseizure medicines in Dravet syndrome in NorwayKatrine Heger0Caroline Lund1Margrete Larsen Burns2Marit Bjørnvold3Erik Sætre4Svein I. Johannessen5Cecilie Johannessen Landmark6Program for Pharmacy Department of Life Sciences and Health Faculty of Health Sciences Oslo Metropolitan University Oslo NorwayDepartment of Rare Genetic Syndromes Oslo University Hospital Oslo NorwaySection for Clinical Pharmacology The National Center for Epilepsy Department of Pharmacology Oslo University Hospital Oslo NorwayThe National Center for Epilepsy Oslo University Hospital Oslo NorwayThe National Center for Epilepsy Oslo University Hospital Oslo NorwaySection for Clinical Pharmacology The National Center for Epilepsy Department of Pharmacology Oslo University Hospital Oslo NorwayProgram for Pharmacy Department of Life Sciences and Health Faculty of Health Sciences Oslo Metropolitan University Oslo NorwayAbstract Objective Dravet syndrome is a developmental and epileptic encephalopathy characterized by severe and drug‐resistant seizures in early childhood, followed by developmental delay. The purpose of this study was to investigate aspects of pharmacological treatment of Norwegian patients with Dravet syndrome, focusing on the use of antiseizure medicines (ASMs) and identifying treatment challenges. Methods Patients were identified through medical registries at the National Center for Epilepsy in Norway and National Center for Rare Epilepsy Related Disorders during 2008‐2018. Additional clinical data were obtained from medical records and laboratory request forms. Results We identified 53 patients with Dravet syndrome, 30/23 males/females, aged 2‐50 years. The majority of patients with known seizure frequency experienced frequent seizures, 80% (n = 35/44). Only two patients were seizure‐free. Valproate (n = 48), clobazam (n = 45), levetiracetam (n = 30), and stiripentol (n = 38) were most commonly used, previous or current use. More than one‐third (n = 20) had tried sodium channel blockers (including lamotrigine), but these drugs were used less during the last decade. Polytherapy was common, 81% (n = 43) used two or more ASMs, and eight of these patients used 4‐5 drugs (15%). Several challenges were identified: high seizure frequency, comorbidities, treatment changes with a wide range of ASMs, common use of oral gastro‐tubes, extensive polypharmacy, and drug interactions. Significance The use of ASMs has changed over the last decade, in accordance with updated international recommendations. Various treatment challenges were identified. This vulnerable group of patients needs close follow‐up for an optimal treatment outcome.https://doi.org/10.1002/epi4.12413antiseizure medicinesDravet syndromeepilepsypolypharmacy
spellingShingle Katrine Heger
Caroline Lund
Margrete Larsen Burns
Marit Bjørnvold
Erik Sætre
Svein I. Johannessen
Cecilie Johannessen Landmark
A retrospective review of changes and challenges in the use of antiseizure medicines in Dravet syndrome in Norway
Epilepsia Open
antiseizure medicines
Dravet syndrome
epilepsy
polypharmacy
title A retrospective review of changes and challenges in the use of antiseizure medicines in Dravet syndrome in Norway
title_full A retrospective review of changes and challenges in the use of antiseizure medicines in Dravet syndrome in Norway
title_fullStr A retrospective review of changes and challenges in the use of antiseizure medicines in Dravet syndrome in Norway
title_full_unstemmed A retrospective review of changes and challenges in the use of antiseizure medicines in Dravet syndrome in Norway
title_short A retrospective review of changes and challenges in the use of antiseizure medicines in Dravet syndrome in Norway
title_sort retrospective review of changes and challenges in the use of antiseizure medicines in dravet syndrome in norway
topic antiseizure medicines
Dravet syndrome
epilepsy
polypharmacy
url https://doi.org/10.1002/epi4.12413
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