Mind the Gap! What do people with epilepsy want to know?

The study highlights a gap between the concerns of people with epilepsy and accurate, readily available information. The unsupervised topic modelling algorithm successfully grouped the questions into themes. Most questions focused on restrictions and loss of opportunities and enjoyment. These currently unanswered questions could lead people to rely on unverified information. The work highlights the need for evidence-based answers, and a focus on positive messages about what people with epilepsy can do to preserve autonomy and maximise quality of life. Future work will seek patient and carer questions in different languages and settings and develop systems to improve information provision for people with epilepsy.