Tamara Herrera-Fortin1, Elie Bou Assi2, Marie-Pierre Gagnon3, Dang K Nguyen2. 1. Research Center of the University of Montreal Health Center, Montreal, Quebec H2X 0A9, Canada. Electronic address: tamara.herrera.fortin@umontreal.ca. 2. Research Center of the University of Montreal Health Center, Montreal, Quebec H2X 0A9, Canada. 3. University Health Center of Quebec - University of Laval, Quebec City, Quebec G1V 4G2, Canada.
Abstract
AIMS: Seizure detectors could have many positive effects on the quality of life of people with epilepsy (PWE) such as alarms to reduce seizure-related injuries or reliable seizure counts leading to improved epilepsy management. As seizure detection gains increasing interest within the epilepsy research community, guidelines for patient-centered designs are needed. This study aims to detail the preferences, needs and concerns regarding potential seizure detectors, of PWE and their caregivers across Canada. METHODS: Two questionnaires were designed to survey PWE and their caregivers on seizure detection acceptability and to collect general clinical characteristics. The surveys were available online for nine weeks and were promoted by Canadian organizations of PWE. Participation was voluntary and anonymous. RESULTS: Responses from 221 PWE and 171 caregivers were collected. Ninety-seven percent of PWE and 99% of caregivers expressed interest in seizure detection. Most would use seizure detectors continuously, in conjunction with a seizure diary, and wanted automated alarms. Smartwatches and bracelets/rings were considered most acceptable and would be worn continuously by 58% and 61% of PWE, respectively. Additional value was attributed to multimodal seizure detection. Responders were most concerned about false negatives, comfort and cost. They expected seizure detection to improve their quality of life and quality of care, and felt confident in their ability to use a seizure detector. CONCLUSIONS: While PWE and caregivers in Canada show great enthusiasm for seizure detection, their opinions are shaped by their perception of the effectiveness and reliability of this technology and its cost. A preliminary technology acceptance model and recommendations promoting the development of seizure detectors demonstrating an understanding of their future users are presented. Future investigations should focus on a larger population of patients who have previously used seizure detection devices to assess user-feedback.
AIMS: Seizure detectors could have many positive effects on the quality of life of people with epilepsy (PWE) such as alarms to reduce seizure-related injuries or reliable seizure counts leading to improved epilepsy management. As seizure detection gains increasing interest within the epilepsy research community, guidelines for patient-centered designs are needed. This study aims to detail the preferences, needs and concerns regarding potential seizure detectors, of PWE and their caregivers across Canada. METHODS: Two questionnaires were designed to survey PWE and their caregivers on seizure detection acceptability and to collect general clinical characteristics. The surveys were available online for nine weeks and were promoted by Canadian organizations of PWE. Participation was voluntary and anonymous. RESULTS: Responses from 221 PWE and 171 caregivers were collected. Ninety-seven percent of PWE and 99% of caregivers expressed interest in seizure detection. Most would use seizure detectors continuously, in conjunction with a seizure diary, and wanted automated alarms. Smartwatches and bracelets/rings were considered most acceptable and would be worn continuously by 58% and 61% of PWE, respectively. Additional value was attributed to multimodal seizure detection. Responders were most concerned about false negatives, comfort and cost. They expected seizure detection to improve their quality of life and quality of care, and felt confident in their ability to use a seizure detector. CONCLUSIONS: While PWE and caregivers in Canada show great enthusiasm for seizure detection, their opinions are shaped by their perception of the effectiveness and reliability of this technology and its cost. A preliminary technology acceptance model and recommendations promoting the development of seizure detectors demonstrating an understanding of their future users are presented. Future investigations should focus on a larger population of patients who have previously used seizure detection devices to assess user-feedback.
Authors: Taneeta Mindy Ganguly; Colin A Ellis; Danni Tu; Russell T Shinohara; Kathryn A Davis; Brian Litt; Jay Pathmanathan Journal: Neurology Date: 2022-04-11 Impact factor: 11.800