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

Rachel Ison,Virad Kisan,Christine Cole,Heather Angus-Leppan

doi:10.3389/fneur.2020.00465

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.

Highlights

Health-care professionals face the challenge of helping people with epilepsy live longer and better
No single tool has been widely adopted by people with epilepsy and health-care professionals, such as specialist epilepsy nurses, to standardize and unify risk assessment in epilepsy
The test–retest of Part A (General Information), B [the Chalfont Seizure Severity Scale [14]], and C of the questionnaire was completed by 102 participants, and 47 participants completed the test–retest of the optional Part D [the Epilepsy Self-Management Scale [13]]

Summary

Introduction

Health-care professionals face the challenge of helping people with epilepsy live longer and better. Epilepsy is one of the most common neurological conditions [1] with associated medical, environmental, psychological, and social consequences that may profoundly affect an individual’s life. ERA Scale employment [2], social isolation [3], and stigma [4] are well documented. As seizure recurrence is unpredictable and fluctuating, there is an ongoing risk for people with epilepsy [3]. While accurate diagnosis and treatment are vital, it is essential to consider individuals’ lives holistically when assessing risk. No single tool has been widely adopted by people with epilepsy and health-care professionals, such as specialist epilepsy nurses, to standardize and unify risk assessment in epilepsy

Methods

Results

Conclusion