The reliability and validity of the Revised Liverpool Impact of Epilepsy Scale for use in people with new-onset epilepsy

Crossley, Joanne; Jacoby, Ann; Baker, Gus A.

doi:10.1016/j.yebeh.2012.11.046

Cited by 12 publications

(6 citation statements)

References 32 publications

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“…Unfortunately, drug-resistant epilepsy (DRE) can present at any age across the spectrum of patients with newly diagnosed epilepsy. Patients with DRE experience decreased quality of life (QOL) ( 9 ), significant medical, social, and financial burden, and increased mortality ( 10 ). Thus, the early identification of risk factors in adult patients who develop DRE will allow physicians a timelier identification for planned management and treatment, and for instance, allow for earlier referral for pre-surgical evaluation.…”

Section: Introductionmentioning

confidence: 99%

Definitions and Risk Factors for Drug-Resistant Epilepsy in an Adult Cohort

et al. 2021

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Background: Less than one-third of people with epilepsy will develop drug-resistant epilepsy (DRE). Establishing the prognosis of each unique epilepsy case is an important part of evaluation and treatment.Most studies on DRE prognosis have been based on a pooled, heterogeneous group, including children, adults, and older adults, in the absence of clear recognition and control of important confounders, such as age group. Furthermore, previous studies were done before the 2010 definition of DRE by the International League Against Epilepsy (ILAE), so data based on the current definitions have not been entirely elucidated. This study aimed to explore the difference between 3 definitions of DRE and clinical predictors of DRE in adults and older adults.Methods: Patients with a new diagnosis of epilepsy ascertained at a Single Seizure Clinic (SSC) in Saskatchewan, Canada were included if they had at least 1 year of follow-up. The first study outcome was the diagnosis of DRE epilepsy at follow-up using the 2010 ILAE definition. This was compared with 2 alternative definitions of DRE by Kwan and Brodie and Camfield and Camfield. Finally, risk factors were analyzed using the ILAE definition.Results: In total, 95 patients with a new diagnosis of epilepsy and a median follow-up of 24 months were included. The median age of patients at the diagnosis of epilepsy was 33 years, and 51% were men. In the cohort, 32% of patients were diagnosed with DRE by the Kwan and Brodie definition, 10% by Camfield and Camfield definition, and 15% by the ILAE definition by the end of follow-up. The only statistically significant risk factor for DRE development was the failure to respond to the first anti-seizure medication (ASM).Conclusion: There were important differences in the percentage of patients diagnosed with DRE when using 3 concurrent definitions. However, the use of the ILAE definition appeared to be the most consistent through an extended follow-up. Finally, failure to respond to the first ASM was the sole significant risk factor for DRE in the cohort after considering the age group.

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Section: Introductionmentioning

confidence: 99%

Definitions and Risk Factors for Drug-Resistant Epilepsy in an Adult Cohort

et al. 2021

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“…These comprised seizure frequency scales, seizure recency (number of days since last seizure), Hospital Anxiety and Depression Scale (HADS) for psychological distress (anxiety and depression), Impact of Epilepsy, Stigma of Epilepsy, Medication Adherence, medication adverse effects extracted from the QOLIE‐31‐P, and Self‐Mastery and Control . Only, the QOLIE‐31‐P, seizure frequency and recency, and Impact of Epilepsy were completed at the 6‐month follow‐up.…”

Section: Methodsmentioning

confidence: 99%

The effectiveness of a group self‐management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial

et al. 2018

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SummaryObjectiveEpilepsy is one of the most common neurological conditions affecting about 1% of adults. Up to 40% of people with epilepsy (PWE) report recurring seizures while on medication. And optimal functioning requires good self‐management. Our objective was to evaluate a group self‐management education courses for people with epilepsy and drug‐resistant seizures by means of a multicenter, pragmatic, parallel group, randomized controlled trial.MethodsWe recruited adults with epilepsy, having ≥2 seizures in the prior 12 months, from specialist clinics. Consenting participants were randomized 1:1 to a group course or treatment as usual. The primary outcome measure was quality of life 12 months after randomization using Quality of Life 31‐P (QOLIE‐31‐P). Secondary outcome measures were seizure frequency and recency, psychological distress, impact and stigma of epilepsy, self‐mastery, medication adherence, and adverse effects. Analysis of outcomes followed the intention‐to‐treat principle using mixed‐effects regression models.ResultsWe enrolled 404 participants (intervention: n = 205, control: n = 199) with 331 (82%) completing 12‐month follow‐up (intervention: n = 163, control: n = 168). Mean age was 41.7 years, ranging from 16 to 85, 54% were female and 75% were white. From the intervention arm, 73.7% attended all or some of the course. At 12‐month follow‐up, there were no statistically significant differences between trial arms in QOLIE‐31‐P (intervention mean: 67.4, standard deviation [SD]: 13.5; control mean: 69.5, SD 14.8) or in secondary outcome measures.SignificanceThis is the first pragmatic trial of group education for people with poorly controlled epilepsy. Recruitment, course attendance, and follow‐up rates were higher than expected. The results show that the primary outcome and quality of life did not differ between the trial arms after 12 months. We found a high prevalence of felt‐stigma and psychological distress in this group of people with drug‐resistant seizures. To address this, social and psychological interventions require evaluation, and may be necessary before or alongside self‐management‐education courses.

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“…The latter was captured using Thapar et al's [40] scale which asks about the number of seizures (of any type) the patient experienced in the previous 12 months. Using the Impact of Epilepsy scale (Revised) [41], participants also rated the extent to which epilepsy imposed restrictions on their life. Finally, ToM performance may hold an association with verbal intelligence.…”

Section: Methodsmentioning

confidence: 99%

Are “Theory of Mind” Skills in People with Epilepsy Related to How Stigmatised They Feel? An Exploratory Study

Noble

Robinson

Marson

2016

Behavioural Neurology

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Feelings of stigma are one of the main burdens reported by people with epilepsy (PWE). Adults with temporal or frontal lobe epilepsy and children with idiopathic generalised epilepsy are at risk of Theory of Mind (ToM) deficits. ToM refers to social cognitive skills, including the ability to understand the thoughts, intentions, beliefs, and emotions of others. It has been proffered that ToM deficits may contribute to the feelings of stigma experienced by PWE. In this study we tested this for the first time. We also determined the association between clinical and demographic factors and ToM performance. Five hundred and three PWE were recruited via epilepsy organisations and completed measures online. Feelings of stigma were measured using Jacoby's Stigma Scale, whilst the Reading the Mind in the Eyes Test and the Faux Pas Test measured ToM. The median age of participants was 37 years, their median years living with epilepsy were 15, and 70% had experienced seizures in the prior 12 months. Feelings of stigma held a negligible, negative, and nonsignificant association with ToM performance (r s −0.02 and −0.05). Our results indicate that the ToM model for understanding epilepsy stigma has limited utility and alternative approaches to understanding and addressing epilepsy-related stigma are required.

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The reliability and validity of the Revised Liverpool Impact of Epilepsy Scale for use in people with new-onset epilepsy

Cited by 12 publications

References 32 publications

Definitions and Risk Factors for Drug-Resistant Epilepsy in an Adult Cohort

Definitions and Risk Factors for Drug-Resistant Epilepsy in an Adult Cohort

The effectiveness of a group self‐management education course for adults with poorly controlled epilepsy, SMILE (UK): A randomized controlled trial

Are “Theory of Mind” Skills in People with Epilepsy Related to How Stigmatised They Feel? An Exploratory Study

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