User experience of a seizure risk forecasting app: A mixed methods investigation

Rachel E Stirling; Ewan S Nurse; Daniel Payne; Jodie Naim-Feil; Honor Coleman; Dean R Freestone; Mark P Richarson; Benjamin H Brinkmann; Wendyl J D'Souza; David B Grayden; Mark J Cook; Philippa J Karoly

doi:10.1016/j.yebeh.2024.109876

User experience of a seizure risk forecasting app: A mixed methods investigation

Epilepsy Behav. 2024 Aug:157:109876. doi: 10.1016/j.yebeh.2024.109876. Epub 2024 Jun 7.

Authors

Affiliations

¹ Department of Biomedical Engineering, University of Melbourne, Melbourne, Victoria, Australia; Graeme Clark Institute of Biomedical Engineering, University of Melbourne, Melbourne, Victoria, Australia. Electronic address: [email protected].
² Graeme Clark Institute of Biomedical Engineering, University of Melbourne, Melbourne, Victoria, Australia; Seer Medical, Melbourne, Victoria, Australia; Department of Medicine, St Vincent's Hospital Melbourne, The University of Melbourne, Australia. Electronic address: [email protected].
³ Seer Medical, Melbourne, Victoria, Australia. Electronic address: [email protected].
⁴ Department of Biomedical Engineering, University of Melbourne, Melbourne, Victoria, Australia; Graeme Clark Institute of Biomedical Engineering, University of Melbourne, Melbourne, Victoria, Australia. Electronic address: [email protected].
⁵ Melbourne School of Psychological Sciences, The University of Melbourne, Melbourne, Victoria, Australia; Epilepsy Research Centre, Department of Medicine (Austin Health), University of Melbourne, Victoria, Melbourne, Australia; Department of Neuroscience, Faculty of Medicine, Nursing & Health Science, Monash University, Melbourne, Australia. Electronic address: [email protected].
⁶ Seer Medical, Melbourne, Victoria, Australia. Electronic address: [email protected].
⁷ Division of Neuroscience, King's College London, London, UK. Electronic address: [email protected].
⁸ Department of Neurology, Mayo Foundation, Rochester, MN, United States. Electronic address: [email protected].
⁹ Department of Medicine, St Vincent's Hospital Melbourne, The University of Melbourne, Australia. Electronic address: [email protected].
¹⁰ Department of Biomedical Engineering, University of Melbourne, Melbourne, Victoria, Australia; Graeme Clark Institute of Biomedical Engineering, University of Melbourne, Melbourne, Victoria, Australia; Department of Medicine, St Vincent's Hospital Melbourne, The University of Melbourne, Australia. Electronic address: [email protected].
¹¹ Graeme Clark Institute of Biomedical Engineering, University of Melbourne, Melbourne, Victoria, Australia; Seer Medical, Melbourne, Victoria, Australia; Department of Medicine, St Vincent's Hospital Melbourne, The University of Melbourne, Australia. Electronic address: [email protected].
¹² Department of Biomedical Engineering, University of Melbourne, Melbourne, Victoria, Australia; Graeme Clark Institute of Biomedical Engineering, University of Melbourne, Melbourne, Victoria, Australia. Electronic address: [email protected].

PMID: 38851123
DOI: 10.1016/j.yebeh.2024.109876

Abstract

Objective: Over recent years, there has been a growing interest in exploring the utility of seizure risk forecasting, particularly how it could improve quality of life for people living with epilepsy. This study reports on user experiences and perspectives of a seizure risk forecaster app, as well as the potential impact on mood and adjustment to epilepsy.

Methods: Active app users were asked to complete a survey (baseline and 3-month follow-up) to assess perspectives on the forecast feature as well as mood and adjustment. Post-hoc, nine neutral forecast users (neither agreed nor disagreed it was useful) completed semi-structured interviews, to gain further insight into their perspectives of epilepsy management and seizure forecasting. Non-parametric statistical tests and inductive thematic analyses were used to analyse the quantitative and qualitative data, respectively.

Results: Surveys were completed by 111 users. Responders consisted of "app users" (n = 58), and "app and forecast users" (n = 53). Of the "app and forecast users", 40 % believed the forecast was accurate enough to be useful in monitoring for seizure risk, and 60 % adopted it for purposes like scheduling activities and helping mental state. Feeling more in control was the most common response to both high and low risk forecasted states. In-depth interviews revealed five broad themes, of which 'frustrations with lack of direction' (regarding their current epilepsy management approach), 'benefits of increased self-knowledge' and 'current and anticipated usefulness of forecasting' were the most common.

Significance: Preliminary results suggest that seizure risk forecasting can be a useful tool for people with epilepsy to make lifestyle changes, such as scheduling daily events, and experience greater feelings of control. These improvements may be attributed, at least partly, to the improvements in self-knowledge experienced through forecast use.

Keywords: Community survey; Mood questionnaires; Non-invasive wearables; Patient experience; Seizure forecasting devices.

MeSH terms

Adolescent
Adult
Aged
Epilepsy / psychology
Female
Follow-Up Studies
Forecasting
Humans
Male
Middle Aged
Mobile Applications
Quality of Life
Risk
Seizures* / diagnosis
Seizures* / psychology
Surveys and Questionnaires
Young Adult