Dataset Information

The Epilepsy Risk Awareness (ERA) Scale: A New Era for Holistic Risk Assessment in Epilepsy.

ABSTRACT: Objective: Best care in epilepsy balances protecting people with epilepsy from risks and avoiding undue restrictions in order to improve quality of life. To date, no single risk assessment tool has been widely adopted by both people with epilepsy and health-care professionals such as specialist epilepsy nurses. The present research refined the Epilepsy Risk Awareness (ERA) Scale, a validated and holistic risk assessment tool, by assessing test-retest reliability of each question and incorporating suggestions from patients regarding design and content. Methods: The draft clinical scale was administered to 102 adult participants from the Epilepsy Service at the Royal Free London National Health Service (NHS) Foundation Trust on two occasions. Quantitative and qualitative analyses were conducted-intraclass correlation coefficient (ICC) estimates were used to assess test-retest reliability of questions, and thematic analysis was used to analyze participants' comments and feedback. Following analysis, the ERA Scale was amended. Of the 102 participants, 32 conducted a further review of the revised ERA Scale to test completion time and provide final comments. Results: ICC reliability level estimates varied from "poor to moderate" to "good to excellent," and four qualitative themes were identified. The ERA Scale was amended accordingly to enhance practicality and usefulness, reducing completion time to approximately 5 min. Significance: The ERA Scale is a validated tool that aims to change clinical practice by standardizing risk assessment in epilepsy, providing a holistic approach that focuses on improved safety and quality of life.

SUBMITTER: Ison R

PROVIDER: S-EPMC7300212 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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Publications

The Epilepsy Risk Awareness (ERA) Scale: A New Era for Holistic Risk Assessment in Epilepsy.

Ison Rachel R Kisan Virad V Cole Christine C Angus-Leppan Heather H

Frontiers in neurology 20200611

<b>Objective:</b> Best care in epilepsy balances protecting people with epilepsy from risks and avoiding undue restrictions in order to improve quality of life. To date, no single risk assessment tool has been widely adopted by both people with epilepsy and health-care professionals such as specialist epilepsy nurses. The present research refined the Epilepsy Risk Awareness (ERA) Scale, a validated and holistic risk assessment tool, by assessing test-retest reliability of each question and incor ...[more]

PMID: 32595587

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Project description:BACKGROUND:Sudden unexpected death in epilepsy (SUDEP) is a major cause of death in those with drug-resistant epilepsy (DRE). There is a need for inventories and biomarkers associated with the risk for SUDEP. OBJECTIVE:To explore the revised SUDEP Risk Inventory (SUDEP-7) in a cohort with DRE and determine the association with Heart Rate and other covariates. METHODS:Twenty-five subjects with severe DRE were enrolled in a clinical trial for epilepsy. Baseline demographics, duration of epilepsy, seizure types, seizure frequency, seizure severity, AEDs, and vital signs were collected. Heart rate variability (HRV) was calculated from 1-h recordings of ECG. A SUDEP Risk Inventory (SUDEP-7) was administered, which included seven validated and weighted risk factors initially identified by Walczak et al. as factors associated with SUDEP risk. RESULTS:The total score on the revised SUDEP-7 ranged from 1 to 7, mean?=?3.4 (SD 1.8). The SUDEP Risk Inventory score was inversely correlated with RMSSD (Pearson r?=?-0.45, p?=?0.027). The following variables were significantly associated with RMSSD: epilepsy duration (p?=?0.02), age (p?=?0.03), and developmental intellectual disability (p?<?0.001). The correlation between RMSSD and SUDEP-7 tended to persist also after the adjustment for patient age (r?=?-0.40, p?=?0.05). Two subjects died of SUDEP: their SUDEP-7 scores were above average and in the upper twenty-fifth and fiftieth percentiles, respectively (6 and 4, mean?=?3.4). CONCLUSION:RMSSD, a measure of low frequency HRV, was significantly associated with SUDEP Risk Inventory (SUDEP-7) scores. Using a multivariate model, the covariates of developmental intellectual disability, age, and duration of epilepsy were also significantly associated with decreased HRV. The correlation between decreased HRV and a higher SUDEP-7 score remained unchanged even after the adjustment for patient age. The results suggest that older age, greater duration of epilepsy, and the presence of developmental intellectual disability may increase the risk of SUDEP through their direct influence on decreasing the vagus nerve-mediated HRV. Further validation of the SUDEP-7 inventory is indicated. TRIAL REGISTRATION:ClinicalTrials.gov, NCT00871377.

Dataset Information

The Epilepsy Risk Awareness (ERA) Scale: A New Era for Holistic Risk Assessment in Epilepsy.

Publications

The Epilepsy Risk Awareness (ERA) Scale: A New Era for Holistic Risk Assessment in Epilepsy.

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