Seizure detection devices and health-related quality of life: A patient- and caregiver-centered evaluation

Abstract

Introduction: The unpredictability of epilepsy has a severe impact on health-related quality of life (HR-QOL) for people with epilepsy. Seizure detection devices have the potential to improve HR-QOL by improving seizure safety, reducing caregiver hypervigilance, and reducing seizure anxiety. Emerging data have led to an improved understanding of characteristics that promote acceptability of detection devices for people with epilepsy and caregivers. However, whether usage of seizure detection devices is associated with clinically meaningful improvement in anxiety and HR-QOL remains poorly understood.

Methods: We analyzed cross-sectional survey data collected first-hand from 371 people with epilepsy and caregivers on seizure detection device and HR-QOL using an enriched population of electronic seizure diary users. Metrics related to quality of life and anxiety reduction were compared between users and nonusers of seizure detection devices.

Results: Compared with nonusers of seizure detection devices, device users were significantly more likely to have been impacted by epilepsy in multiple HR-QOL domains, including anxiety, mood, emotional regulation/aggression, speech/language, sleep quality, social life, activities of daily living, independence, and education/academic potential. The majority (80.2%) of people using seizure detection devices experienced moderate or greater anxiety reduction from seizure detection device usage, while 11.1% reported that detection devices did not help at all with anxiety. Despite potential benefit, seizure detection devices were used only by a minority (21.8%) of people with epilepsy surveyed, and usage tended to be skewed toward younger patient age, higher income, and caregivers. There was no significant difference in overall HR-QOL between users and nonusers.

Conclusions: Seizure detection devices provide moderate or greater anxiety reduction among the majority of people with epilepsy and their caregivers, but current translatability into improvements in overall HR-QOL may be limited. Affordability and technological support are potential barriers to maximizing benefit equally among the epilepsy community. These considerations may be useful to help guide future device development and inform patient-clinician discussions on device usage and HR-QOL.

Keywords: Epilepsy; Medical devices; Patient preferences; Quality of life; Seizure detection.