RESUMO
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.
RESUMO
OBJECTIVE: The objective of the study was to assess level of knowledge and attitudes of SUDEP among people living with epilepsy (PLWE) and healthcare workers providing epilepsy care in Uganda. METHODS: This cross-sectional study of 48 PLWE and 19 epilepsy care providers used a tailored questionnaire to evaluate epilepsy and SUDEP knowledge, frequency of SUDEP discussion, reasons for not discussing SUDEP, timing of SUDEP discussions, and perceived patient reactions to being provided information on SUDEP. RESULTS: Median PLWE sample age was 25 (IQR; 19-34) years, 10 (20.8%) were male, median age of onset of epilepsy 12 (IQR; 6-18) years. Half of the PLWE reported that they had never heard of SUDEP. Most PLWE desired detailed information regarding SUDEP and preferred this information during the subsequent visits. Healthcare provider sample mean age was 35.7 (22.8) years, 12 (63.2%) were male and composed of 4 physicians (21.1%). Only 15% (3/20) of providers discussed SUDEP with their patients while 85% (17/20) have never discussed it. The main reasons for not discussing SUDEP were not knowing enough about SUDEP (89.5%) and no adequate support network available (30%). Providers that discussed SUDEP (100%) reported that negative reactions were the most common patient response. SIGNIFICANCE: In this Ugandan sample, most PLWE are not aware of SUDEP and epilepsy care providers rarely discuss SUDEP with their patients or patient caregivers. Negative reactions to SUDEP discussions are common but not universal. There is an urgent need for epilepsy educational programs in clinics and targeted communities addressing SUDEP.