Sara K Simblett1, Elisa Bruno2, Sara Siddi3, Faith Matcham2, Loretta Giuliano4, Jorge Hortas López5, Andrea Biondi2, Hannah Curtis2, José Ferrão6, Ashley Polhemus6, Mario Zappia4, Antonio Callen3, Peter Gamble6, Til Wykes7. 1. Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK. Electronic address: sara.simblett@kcl.ac.uk. 2. Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK. 3. Parc Sanitari Sant Joan de Déu, Sant Boi de Llobregat, Centro de Investigació Biomedica en Red CIBERSAM, Spain; University of Barcelona, Barcelona, Spain. 4. Department of Medical and Surgical Sciences and Advanced Technologies "G.F. Ingrassia", Section of Neurosciences, University of Catania, Catania, Italy. 5. QITERIA Investigación Social Aplicada, Madrid, Spain. 6. MSD Czech Republic, Prague, Czech Republic. 7. Institute of Psychiatry, Psychology and Neuroscience, King's College London, UK; NIHR Biomedical Research Centre for Mental Health at the South London and Maudsley NHS Foundation Trust, King's College London, UK.
Abstract
BACKGROUND: Innovative uses of mobile health (mHealth) technology for real-time measurement and management of epilepsy may improve the care provided to patients. For instance, seizure detection and quantifying related problems will have an impact on quality of life and improve clinical management for people experiencing frequent and uncontrolled seizures. Engaging patients with mHealth technology is essential, but little is known about patient perspectives on their acceptability. The aim of this study was to conduct an in-depth qualitative analysis of what people with uncontrolled epilepsy think could be the potential uses of mHealth technology and to identify early potential barriers and facilitators to engagement in three European countries. METHOD: Twenty people currently experiencing epileptic seizures took part in five focus groups held across the UK, Italy, and Spain. Participants all completed written consent and a demographic questionnaire prior to the focus group commencing, and each group discussion lasted 60-120 min. A coding frame, developed from a systematic review of the previous literature, was used to structure a thematic analysis. We extracted themes and subthemes from the discussions, focusing first on possible uses of mHealth and then the barriers and facilitators to engagement. RESULTS: Participants were interested in mHealth technology as a clinical detection tool, e.g., to aid communication about seizure occurrence with their doctors. Other suggested uses included being able to predict or prevent seizures, and to improve self-management. Key facilitators to engagement were the ability to raise awareness, plan activities better, and improve safety. Key barriers were the potential for increased stigma and anxiety. Using familiar and customizable products could be important moderators of engagement. CONCLUSION: People with uncontrolled epilepsy think that there is a scope for mHealth technology to be useful in healthcare as a detection or prediction tool. The costs will be compared with the benefits when it comes to engagement, and ongoing work with patients and other stakeholders is needed to design practical resources.
BACKGROUND: Innovative uses of mobile health (mHealth) technology for real-time measurement and management of epilepsy may improve the care provided to patients. For instance, seizure detection and quantifying related problems will have an impact on quality of life and improve clinical management for people experiencing frequent and uncontrolled seizures. Engaging patients with mHealth technology is essential, but little is known about patient perspectives on their acceptability. The aim of this study was to conduct an in-depth qualitative analysis of what people with uncontrolled epilepsy think could be the potential uses of mHealth technology and to identify early potential barriers and facilitators to engagement in three European countries. METHOD: Twenty people currently experiencing epileptic seizures took part in five focus groups held across the UK, Italy, and Spain. Participants all completed written consent and a demographic questionnaire prior to the focus group commencing, and each group discussion lasted 60-120 min. A coding frame, developed from a systematic review of the previous literature, was used to structure a thematic analysis. We extracted themes and subthemes from the discussions, focusing first on possible uses of mHealth and then the barriers and facilitators to engagement. RESULTS:Participants were interested in mHealth technology as a clinical detection tool, e.g., to aid communication about seizure occurrence with their doctors. Other suggested uses included being able to predict or prevent seizures, and to improve self-management. Key facilitators to engagement were the ability to raise awareness, plan activities better, and improve safety. Key barriers were the potential for increased stigma and anxiety. Using familiar and customizable products could be important moderators of engagement. CONCLUSION:People with uncontrolled epilepsy think that there is a scope for mHealth technology to be useful in healthcare as a detection or prediction tool. The costs will be compared with the benefits when it comes to engagement, and ongoing work with patients and other stakeholders is needed to design practical resources.
Authors: Katie M White; Charlotte Williamson; Nicol Bergou; Carolin Oetzmann; Valeria de Angel; Faith Matcham; Claire Henderson; Matthew Hotopf Journal: NPJ Digit Med Date: 2022-06-29
Authors: Sara Simblett; Mark Pennington; Matthew Quaife; Evangelia Theochari; Patrick Burke; Giampaolo Brichetto; Julie Devonshire; Simon Lees; Ann Little; Angie Pullen; Amanda Stoneman; Sarah Thorpe; Janice Weyer; Ashley Polhemus; Jan Novak; Erin Dawe-Lane; Daniel Morris; Magano Mutepua; Clarissa Odoi; Emma Wilson; Til Wykes Journal: JMIR Form Res Date: 2022-05-23
Authors: Elisa Bruno; Andrea Biondi; Sebastian Böttcher; Gergely Vértes; Richard Dobson; Amos Folarin; Yatharth Ranjan; Zulqarnain Rashid; Nikolay Manyakov; Aki Rintala; Inez Myin-Germeys; Sara Simblett; Til Wykes; Amanda Stoneman; Ann Little; Sarah Thorpe; Simon Lees; Andreas Schulze-Bonhage; Mark Richardson Journal: JMIR Res Protoc Date: 2020-12-16
Authors: Sara Simblett; Faith Matcham; Hannah Curtis; Ben Greer; Ashley Polhemus; Jan Novák; Jose Ferrao; Peter Gamble; Matthew Hotopf; Vaibhav Narayan; Til Wykes Journal: JMIR Mhealth Uhealth Date: 2020-06-10 Impact factor: 4.773
Authors: Allison A Lewinski; Abigail Shapiro; Jennifer M Gierisch; Karen M Goldstein; Dan V Blalock; Matthew W Luedke; Adelaide M Gordon; Hayden B Bosworth; Connor Drake; Jeffrey D Lewis; Saurabh R Sinha; Aatif M Husain; Tung T Tran; Megan G Van Noord; John W Williams Journal: Syst Rev Date: 2020-04-25
Authors: Michael P Craven; Jacob A Andrews; Alexandra R Lang; Sara K Simblett; Stuart Bruce; Sarah Thorpe; Til Wykes; Richard Morriss; Chris Hollis Journal: JMIR Form Res Date: 2020-11-26