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

There is little research about the questions asked by people with epilepsy, and how these are answered. Information sources include standardised medical or charity websites, responses generated by artificial intelligence paradigms and informal peer support.

Through social media (X, formerly Twitter) people with epilepsy were asked "what would you ask a neurologist/epileptologist" and "do you have any questions relating to your epilepsy". Responses were themed using an unsupervised topic modelling algorithm to categorise into an aggregated question set.Thematic qualitative analysis characterised emotional content and underlying patterns of the responses.

Questions and responses were in English. There were 2752 responses from Europe, North America and Australia, in the format of natural language. 74% of the questions generated are not currently answered by verified sources. 83% centred on restrictions and limitations.

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.