Towards user-centered design of medical devices for SUDEP prediction and prevention: Insights from persons with epilepsy and caregivers.

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.

User involvement in the design and development of medical devices in epilepsy: A systematic review.

OBJECTIVE: This systematic review aims to describe the involvement of persons with epilepsy (PWE), healthcare professionals (HP) and caregivers (CG) in the design and development of medical devices is epilepsy. METHODS: A systematic review was conducted, adhering to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Eligibility criteria included peer-reviewed research focusing on medical devices for epilepsy management, involving users (PWE, CG, and HP) during the MDD process. Searches were performed on PubMed, Web of Science, and Scopus, and a total of 55 relevant articles were identified and reviewed. RESULTS: From 1999 to 2023, there was a gradual increase in the number of publications related to user involvement in epilepsy medical device development (MDD), highlighting the growing interest in this field. The medical devices involved in these studies encompassed a range of seizure detection tools, healthcare information systems, vagus nerve stimulation (VNS) and electroencephalogram (EEG) technologies reflecting the emphasis on seizure detection, prediction, and prevention. PWE and CG were the primary users involved, underscoring the importance of their perspectives. Surveys, usability testing, interviews, and focus groups were the methods used for capturing user perspectives. User involvement occurs in four out of the five stages of MDD, with production being the exception. SIGNIFICANCE: User involvement in the MDD process for epilepsy management is an emerging area of interest holding a significant promise for improving device quality and patient outcomes. This review highlights the need for broader and more effective user involvement, as it currently lags in the development of commercially available medical devices for epilepsy management. Future research should explore the benefits and barriers of user involvement to enhance medical device technologies for epilepsy. PLAIN LANGUAGE SUMMARY: This review covers studies that have involved users in the development process of medical devices for epilepsy. The studies reported here have focused on getting input from people with epilepsy, their caregivers, and healthcare providers. These devices include tools for detecting seizures, stimulating nerves, and tracking brain activity. Most user feedback was gathered through surveys, usability tests, interviews, and focus groups. Users were involved in nearly every stage of device development except production. The review highlights that involving users can improve device quality and patient outcomes, but more effective involvement is needed in commercial device development. Future research should focus on the benefits and challenges of user involvement.

Inclusive design in the implementation of projects for schools modernization in Portugal - case studies.

The Project for Schools Modernization taking place in Portugal, with an estimated total investment of 2450 million for the intervention in the first 205 schools, provide the reclassification of 332 secondary schools by 2015. One of the questions we can pose is if the authorities and the teams of architects selected to design these schools considered fundamental for the correctness of architectural barriers within the school and its accessibility the implementation of standards and principles of inclusion of children/teenagers with special needs within their school environment. As most of the projects are already being implemented, the main aim of this paper is to present the outcomes of a comparative analysis and synthesis of six schools located in the northern part of the country. This analysis occurs from the of Participatory Design perspective which appeals to the experience of the disable children to look (or evaluate) the negative and positive factors in terms of physical space, interpreted by inclusive design rules and orientations. Therefore, the evaluation of schools modernization project, and its discussion, is central for the understanding how these children are addressed in projects which are directed at them.

Investimento parental e desenvolvimento da criança / Parental investment and child development

Segundo a teoria do investimento parental, seria esperada uma relação entre condições de criação da mãe e sua carreira reprodutiva e, por conseqüência, seus padrões de cuidado aos filhos, com repercussões no desenvolvimento das crianças. Esta pesquisa buscou verificar essas relações, em amostra de 37 mães e seus filhos entre um e quatro anos, de um bairro pobre de Salvador, Bahia. Foi investigada a história familiar e reprodutiva das mães, associada a resultados desenvolvimentais das crianças, medidos através das escalas Bayley e WIPPSI-R, em quatro avaliações realizadas ao longo de três anos. Foram encontradas correlações entre condições de criação da mãe e sua carreira reprodutiva subseqüente. Por sua vez, esses padrões mostraram-se modestamente relacionados ao desenvolvimento cognitivo de seus filhos, favorecendo as crianças cujas mães iniciaram sua vida reprodutiva mais tarde. Os resultados são, em geral, compatíveis com a teoria do investimento parental. Limitações do estudo e perspectivas futuras são discutidas.

According to the parental investment theory, it would be expected an association between maternal family environment and her reproductive behavior and, as a consequence, her patterns of parental investment on her children, with effects on their development. This study aimed to verify that association, in a sample of 37 mothers and their children (one to four years old), in a poor neighborhood of Salvador, in the state of Bahia, Brazil. We studied the family and reproductive history of the mothers and assessed the cognitive development of children, through Bayley and WIPPSI-R scales, in four assessments during three years. We found correlation between the raising environment of the mother and her subsequent reproductive patterns. These patterns were related to cognitive development of children, favoring children whose mothers started their reproductive life later. The results are, in general, compatible with the parental investment theory. Limitations of the study and future perspectives are discussed.