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Towards user-centered design of medical devices for SUDEP prediction and prevention: Insights from persons with epilepsy and caregivers.
Ferreira, João; França, Miguel; Rei, Mariana; Peixoto, Ricardo; Armand Larsen, Sidsel; Bernini, Adriano; Lopes, Lígia; Conde, Carlos; Claro, João.
Afiliación
  • Ferreira J; Faculty of Engineering, University of Porto, Porto, Portugal; Biostrike Unipessoal Lda, Porto, Portugal. Electronic address: joao.ferreira@biostrike.pt.
  • França M; i3S - Instituto de Investigação e Inovação em Saúde, University of Porto, Porto, Portugal.
  • Rei M; Faculty of Nutrition and Food Sciences, University of Porto, Porto, Portugal; EPIUnit - Epidemiology Research Unit, Institute of Public Health, University of Porto, Porto, Portugal; ITR - Laboratory for Integrative and Translational Research in Population Health, University of Porto, Porto, Portugal
  • Peixoto R; Faculty of Engineering, University of Porto, Porto, Portugal; Biostrike Unipessoal Lda, Porto, Portugal.
  • Armand Larsen S; Department of Clinical Neurophysiology, Danish Epilepsy Centre, Dianalund, Denmark.
  • Bernini A; Department of Clinical Neurosciences, Lausanne University Hospital (CHUV), University of Lausanne, Rue du Bugnon 46, 1005 Lausanne, Switzerland.
  • Lopes L; Faculty of Engineering, University of Porto, Porto, Portugal; FBAUP - Faculty of Fine Arts, University of Porto, Porto, Portugal.
  • Conde C; i3S - Instituto de Investigação e Inovação em Saúde, University of Porto, Porto, Portugal; ICBAS - School of Medicine and Biomedical Sciences, University of Porto, Porto, Portugal; Institute for Molecular and Cell Biology, University of Porto, Porto, Portugal. Electronic address: cconde@ibmc.up.pt.
  • Claro J; Faculty of Engineering, University of Porto, Porto, Portugal; INESC TEC, Porto, Portugal. Electronic address: jclaro@fe.up.pt.
Epilepsy Behav ; 161: 110034, 2024 Sep 21.
Article en En | MEDLINE | ID: mdl-39306979
ABSTRACT

OBJECTIVES:

As epilepsy management medical devices emerge as potential technological solutions for prediction and prevention of sudden death in epilepsy (SUDEP), there is a gap in understanding the features and priorities that should be included in the design of these devices. This study aims to bridge the gap between current technology and emerging needs by leveraging insights from persons with epilepsy (PWE) and caregivers (CG) on current epilepsy management devices and understanding how SUDEP awareness influences preferences and design considerations for potential future solutions.

METHODS:

Two cross-sectional surveys were designed to survey PWE and CG on medical device design features, SUDEP awareness, and participation in medical device research. Data analysis included both qualitative thematic analysis and quantitative statistical analysis.

RESULTS:

The survey revealed that among 284 responses, CG were more aware of SUDEP than PWE. Comfort was identified as the primary concern regarding wearable medical devices for epilepsy management with significant differences between PWE and CG regarding acceptance and continuous use preferences. The thematic analysis identified integration with daily life, aesthetic and emotional resonance, adaptability to seizure characteristics, and user-centric design specifications as crucial factors to be considered for enhanced medical device adoption. The integration of a companion app is seen as an important tool to enhance communication and data sharing.

DISCUSSION:

This study reveals that while SUDEP awareness can promote the development of future SUDEP predictive and preventive medical devices, these should be designed to mitigate its impact on daily life and anxiety of both PWE and CG. Comfort and acceptance are seen as key priorities to support continuous use and are seen as a technical requirement of future medical devices for SUDEP prediction and prevention. Widespread adoption requires these technologies to be customizable to adapt to different lifestyles and social situations. A holistic approach should be used in the design of future medical devices to capture several dimensions of PWE and CG epilepsy management journey and uphold communication between healthcare professionals, PWE and CG.

CONCLUSION:

Data from this study highlight the importance of considering user preferences and experiences in the design of epilepsy management medical devices with potential applicability for SUDEP prediction and prevention. By employing user-centered design methods this research provides valuable insights to inform the development of future SUDEP prediction and prevention devices.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Epilepsy Behav Asunto de la revista: CIENCIAS DO COMPORTAMENTO / NEUROLOGIA Año: 2024 Tipo del documento: Article Pais de publicación: Estados Unidos
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Epilepsy Behav Asunto de la revista: CIENCIAS DO COMPORTAMENTO / NEUROLOGIA Año: 2024 Tipo del documento: Article Pais de publicación: Estados Unidos