Preferences and User Experiences of Wearable Devices in Epilepsy

Abstract

Background and Objectives:To examine the preferences and user experiences of people with epilepsy and caregivers regarding automated wearable seizure detection devices.Methods:We performed a mixed-methods systematic review. We searched electronic databases for original peer-reviewed publications between January 1, 2000, and May 26, 2021. Key search terms included “epilepsy”, “seizure”, “wearable”, and “non-invasive”. We performed a descriptive and a qualitative thematic analysis of the studies included according to the technology acceptance model. Full texts of the discussion sections were further analyzed to identify word frequency and word mapping.Results:Twenty-two observational studies were identified. Collectively, they comprised responses from 3299 participants including patients with epilepsy, caregivers and healthcare workers. Sixteen studies examined user preferences, five examined user experiences, and one examined both experiences and preferences. Important preferences for wearables included improving care, cost, accuracy, and design. Patients desired real-time detection with a latency of ≤15 minutes from seizure occurrence, along with high sensitivity (≥90%) and low false-alarm rates. Device related costs were a major factor for device acceptance, where device costs of <$300 USD and a monthly subscription fee of <$20 USD were preferred. Despite being a major driver of wearable-based technologies, sudden unexpected death in epilepsy (SUDEP) was rarely discussed. Among studies evaluating user experiences, there was a greater acceptance towards wristwatches. Thematic coding analysis showed that attitudes towards device use, and perceived usefulness were reported consistently. Word mapping identified ‘specificity’, ‘cost’, and ‘battery’ as key single terms, and ‘battery life’, ‘insurance coverage’, ‘prediction/detection quality’, and the effect of devices on ‘daily life’ as key bigrams.Discussion:User acceptance of wearable technology for seizure detection was strongly influenced by accuracy, design, comfort, and cost. Our findings emphasise the need for standardised and validated tools to comprehensively examine preferences and user experiences of wearable devices in this population, using the themes identified in this study. Greater efforts to incorporate perspectives and user experiences in developing wearables for seizure detection, particularly in community-based settings are needed.PROSPERO Registration:CRD42020193565.

Multimodal nocturnal seizure detection in children with epilepsy: A prospective, multicenter, long‐term, in‐home trial

“…Nonetheless, not all wanted to continue NightWatch, mainly due to cost (NightWatch is not yet reimbursable in the Netherlands), FAR, or seizure remission, thus emphasizing that SDD implementation is a multifactorial process. Acceptance of a device into a family home depends on device performance and even more on contextual factors like the burden of care 8 and taking time to trust the device 35,36 …”

“…Acceptance of a device into a family home depends on device performance and even more on contextual factors like the burden of care 8 and taking time to trust the device. 35,36 Future SDD studies should focus on ways to reduce FAR, which could facilitate implementation. Possible avenues include validating multiple algorithms that improve performance in specific subgroups (e.g., by focusing more on HR parameters than movement) and applying machine learning techniques to create individual-specific algorithms.…”

Feasibility of cardiac‐based seizure detection and prediction: A systematic review of non‐invasive wearable sensor‐based studies

“…A recent systematic review discovered that performance, design, comfort, and cost are crucial factors that determine the acceptance of wearable devices in real-world settings although this was not specific to seizure detection or prediction. 62 Additionally, people with epilepsy highly prefer non-stigmatizing devices that can be seamlessly integrated into their daily lives thereby justifying the need for real-world usability studies for these cardiac-based seizure detection and prediction devices. 61 Once validated, the cardiac-based seizure device, particularly the seizure prediction device, will be a game-changer in epilepsy management, as treatment against seizures can be utilized more efficiently in a proactive manner than the current reactive seizure management strategies, thereby ensuring timely prevention of seizures and reducing the occurrence of drug adverse effects and resistance caused by overloading of current ASMs.…”

Sudden unexpected death in epilepsy

“…Devices will not be foolproof, and just having a device will not eradicate SUDEP, but devices have the potential to reduce the likelihood of SUDEP. The choice of which device and how it will be monitored is a personal one [142][143][144]. Many encounters with bereaved family members of those who died from SUDEP begin with the bereaved saying that they were not told about the risk of SUDEP.…”