The burden of disease of idiopathic/genetic generalized epilepsy – A nationwide online survey

Sofie Mangaard,Joanna Gesche,Line Delcomyn,Christoph P Beier

doi:10.1016/j.yebeh.2021.108232

Sofie Mangaard, Joanna Gesche + Show 2 more

Open Access

https://doi.org/10.1016/j.yebeh.2021.108232

Copy DOI

Abstract

The aim of the study was to assess the self-reported burden of disease in people with idiopathic/genetic generalized epilepsy and risk factors associated with high disease burden.We performed a nationwide online survey on epilepsy characteristics/treatment, quality of life/daily living followed by Standardized Assessment of Personality-Abbreviated Scale, Major Depression Inventory, Barratt Impulsiveness Scale (brief) and the brief Epilepsy Anxiety Survey Instrument. The survey was sent to 275 representative patients with IGE (‘Funen cohort’) and later publicly distributed via the Danish Epilepsy Association.The characteristics of the responders of the ‘Funen cohort’ (n = 119) did not differ from non-responders and previously assessed data. Out of 753 persons accessing the public survey, 167 had probable IGE. As compared to the ‘Funen cohort’, patients from the public survey reported similar age, time since last seizure, years with disease, seizure types, and IGE syndromes but more current and previously tried anti-seizure medications (ASMs). In both cohorts, patients had higher scores for depression, impulsivity, and personality disorders as compared to Danish normal values irrespective of seizure control or medication. Higher depression and anxiety scores but neither impulsivity nor personality disorders were associated with ongoing seizures. Overall health condition was estimated as bad by 28%. In the last four weeks, 20.4% reported limitations of activities of daily living due to epilepsy; 27.8% felt fed up because of their epilepsy. Patients with high subjective disease burden had more current ASMs, shorter time since last seizure and increased scores for depression, anxiety, impulsivity, and personality disorders.In conclusion, having IGE was associated with higher scores for impulsivity, depression, and personality disorders irrespective of seizure control and current treatment. High subjective disease burden was common and associated with ongoing seizures, absence/myoclonic seizures and high scores for impulsivity, depression, anxiety, and personality disorders.

Highlights

In adults, idiopathic/genetic generalized epilepsy (IGE) comprises Juvenile Myoclonic Epilepsy (JME), Juvenile Absence Epilepsy (JAE), and Epilepsy with Generalized Tonic-Clonic SeizuresAbbreviations: IGE, idiopathic/genetic generalized epilepsy; JME, Juvenile Myoclonic Epilepsy; JAE, Juvenile Absence Epilepsy; EGTCS, Epilepsy with Generalized Tonic-Clonic Seizures alone; anti-seizure medication (ASM), Anti-seizure medication; BIS-8, The Barratt Impulsiveness Scale-Brief; SAPAS-AV, Standardized Assessment of Personality Abbreviated Scale Adolescent version; MDI, Major Depression Inventory; brEASI, The Epilepsy Anxiety Survey Instrument brief version.alone (EGTCS) [1]
IGE is not associated with severe cognitive decline or deficits [2] and the majority of patients achieve seizure control on anti-seizure medication (ASM), most patients need to try multiple ASMs [3,4]
85 patients previously completed a BIS-8 as part of a telephone interview as part of a related project [25], which allowed for validating the online survey

Summary

Introduction

Idiopathic/genetic generalized epilepsy (IGE) comprises Juvenile Myoclonic Epilepsy (JME), Juvenile Absence Epilepsy (JAE), and Epilepsy with Generalized Tonic-Clonic Seizuresalone (EGTCS) [1]. Idiopathic/genetic generalized epilepsy (IGE) comprises Juvenile Myoclonic Epilepsy (JME), Juvenile Absence Epilepsy (JAE), and Epilepsy with Generalized Tonic-Clonic Seizures. IGE is not associated with severe cognitive decline or deficits [2] and the majority of patients achieve seizure control on anti-seizure medication (ASM), most patients need to try multiple ASMs [3,4]. A minority of patients suffer from drug-resistant epilepsy, which is associated with negative socioeconomic outcome [2] and more psychiatric comorbidities than the background population [5]. Patients without recent seizures tend to have fewer children, lower education, employment, and income than healthy controls [5] suggesting that social outcome is not merely determined by seizure control.

Objectives

Methods

Results

Conclusion