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.
Keywords: clinical scale; epilepsy; holistic; quality of life; risk assessment; risk awareness; sudden unexpected death in epilepsy.
Copyright © 2020 Ison, Kisan, Cole and Angus-Leppan.