TY - JOUR
T1 - Feasibility and acceptability of an ultra-long-term at-home EEG monitoring system (EEG@HOME) for people with epilepsy
AU - Biondi, Andrea
AU - Simblett, Sara K
AU - Viana, Pedro F
AU - Laiou, Petroula
AU - Fiori, Anna M G
AU - Nurse, Ewan
AU - Schreuder, Martijn
AU - Pal, Deb K
AU - Richardson, Mark P
N1 - Funding Information:
The study is funded by Epilepsy Research UK, award number 1803. MPR, PFV, and EN are supported by the Epilepsy Foundation of America's Epilepsy Innovation Institute My Seizure Gauge grant. The funding bodies have not been involved in the design of the study, the collection or analysis of data, or the interpretation of data.
Funding Information:
The study is funded by Epilepsy Research UK , award number 1803 . MPR, PFV, and EN are supported by the Epilepsy Foundation of America’s Epilepsy Innovation Institute My Seizure Gauge grant. The funding bodies have not been involved in the design of the study, the collection or analysis of data, or the interpretation of data.
Publisher Copyright:
© 2023 Elsevier Inc.
PY - 2024/2
Y1 - 2024/2
N2 - BACKGROUND: Recent technological advancements offer new ways to monitor and manage epilepsy. The adoption of these devices in routine clinical practice will strongly depend on patient acceptability and usability, with their perspectives being crucial. Previous studies provided feedback from patients, but few explored the experience of them using independently multiple devices independently at home.PURPOSE: The study, assessed through a mixed methods design, the direct experiences of people with epilepsy independently using a non-invasive monitoring system (EEG@HOME) for an extended duration of 6 months, at home. We aimed to investigate factors affecting engagement, gather qualitative insights, and provide recommendations for future home epilepsy monitoring systems.MATERIALS AND METHODS: Adults with epilepsy independently were trained to use a wearable dry EEG system, a wrist-worn device, and a smartphone app for seizure tracking and behaviour monitoring for 6 months at home. Monthly acceptability questionnaires (PSSUQ, SUS) and semi-structured interviews were conducted to explore participant experience. Adherence with the procedure, acceptability scores and systematic thematic analysis of the interviews, focusing on the experience with the procedure, motivation and benefits and opinion about the procedure were assessed.RESULTS: Twelve people with epilepsy took part into the study for an average of 193.8 days (range 61 to 312) with a likelihood of using the system at six months of 83 %. The e-diary and the smartwatch were highly acceptable and preferred to a wearable EEG system (PSSUQ score of 1.9, 1.9, 2.4). Participants showed an acceptable level of adherence with all solutions (Average usage of 63 %, 66 %, 92 %) reporting more difficulties using the EEG twice a day and remembering to complete the daily behavioural questionnaires. Clear information and training, continuous remote support, perceived direct and indirect benefits and the possibility to have a flexible, tailored to daily routine monitoring were defined as key factors to ensure compliance with long-term monitoring systems.CONCLUSIONS: EEG@HOME study demonstrated people with epilepsy' interest and ability in active health monitoring using new technologies. Remote training and support enable independent home use of new non-invasive technologies, but to ensure long term acceptability and usability systems will require to be integrated into patients' routines, include healthcare providers, and offer continuous support and personalized feedback.
AB - BACKGROUND: Recent technological advancements offer new ways to monitor and manage epilepsy. The adoption of these devices in routine clinical practice will strongly depend on patient acceptability and usability, with their perspectives being crucial. Previous studies provided feedback from patients, but few explored the experience of them using independently multiple devices independently at home.PURPOSE: The study, assessed through a mixed methods design, the direct experiences of people with epilepsy independently using a non-invasive monitoring system (EEG@HOME) for an extended duration of 6 months, at home. We aimed to investigate factors affecting engagement, gather qualitative insights, and provide recommendations for future home epilepsy monitoring systems.MATERIALS AND METHODS: Adults with epilepsy independently were trained to use a wearable dry EEG system, a wrist-worn device, and a smartphone app for seizure tracking and behaviour monitoring for 6 months at home. Monthly acceptability questionnaires (PSSUQ, SUS) and semi-structured interviews were conducted to explore participant experience. Adherence with the procedure, acceptability scores and systematic thematic analysis of the interviews, focusing on the experience with the procedure, motivation and benefits and opinion about the procedure were assessed.RESULTS: Twelve people with epilepsy took part into the study for an average of 193.8 days (range 61 to 312) with a likelihood of using the system at six months of 83 %. The e-diary and the smartwatch were highly acceptable and preferred to a wearable EEG system (PSSUQ score of 1.9, 1.9, 2.4). Participants showed an acceptable level of adherence with all solutions (Average usage of 63 %, 66 %, 92 %) reporting more difficulties using the EEG twice a day and remembering to complete the daily behavioural questionnaires. Clear information and training, continuous remote support, perceived direct and indirect benefits and the possibility to have a flexible, tailored to daily routine monitoring were defined as key factors to ensure compliance with long-term monitoring systems.CONCLUSIONS: EEG@HOME study demonstrated people with epilepsy' interest and ability in active health monitoring using new technologies. Remote training and support enable independent home use of new non-invasive technologies, but to ensure long term acceptability and usability systems will require to be integrated into patients' routines, include healthcare providers, and offer continuous support and personalized feedback.
KW - Adult
KW - Humans
KW - Feasibility Studies
KW - Epilepsy/diagnosis
KW - Health Personnel
KW - Surveys and Questionnaires
KW - Electroencephalography
UR - http://www.scopus.com/inward/record.url?scp=85181673867&partnerID=8YFLogxK
U2 - 10.1016/j.yebeh.2023.109609
DO - 10.1016/j.yebeh.2023.109609
M3 - Article
C2 - 38160578
SN - 1525-5050
VL - 151
SP - 109609
JO - Epilepsy & Behavior
JF - Epilepsy & Behavior
M1 - 109609
ER -