Seizure Forecasting: Patient and Caregiver Perspectives

Area of Science:

• Neurology
• Biomedical Engineering
• Data Science

Background:

• Recent advancements in machine learning and EEG technology are enabling accurate seizure forecasting.
• Unpredictability of seizures significantly impacts the quality of life for individuals with epilepsy and their caregivers.

Purpose of the Study:

• To understand user needs and acceptance of seizure forecasting tools.
• To guide the development of personalized seizure prediction algorithms and products.

Main Methods:

• Analysis of survey data from individuals with epilepsy and caregivers conducted by the Epilepsy Foundation in 2021.
• Leveraging large-scale data curation and consumer wearable data for algorithm development.

Main Results:

• The 2016 survey highlighted unpredictability as a major challenge.
• The 2021 survey aims to gather insights on practical use-cases and user acceptance.

Conclusions:

• Community input is crucial for developing seizure forecasting tools that meet the needs of people living with epilepsy.
• Ensuring user acceptance and integration into daily life is paramount for successful seizure prediction technology.