We characterize online search data for status epilepticus (SE) to identify areas for targeted patient education.

Status epilepticus (SE) represents a life-threatening neurologic emergency with a high mortality rate approaching 30% and significant healthcare costs, estimated at more than $4 billion USD/year. Improving patient education may be one of the most important measures to reduce epilepsy-related mortality. As many patients turn to web-based educational information, understanding SE search trends serves as an opportunity for targeted patient education.

Google search data based on the search term “Status Epilepticus” were analyzed according to the most common People Also Ask (PAA) questions. “Search Response” (https://searchresponse.io/) was used to perform searches against a dataset of over 150 million PAA questions. The top 100 PAA questions relevant to the keyword were ranked based on popularity. Two authors (MT and AZ) independently grouped the questions into categories adapted from the National Academy of Medicine, which highlight the general educational needs for any person with epilepsy.

“Search Response” retrieved 601 questions relating to the term “Status Epilepticus”. Categorizing the top 100 questions revealed the greatest number of questions related to Definition, Signs, and Symptoms (43) (e.g., “What is status epilepticus”), followed by Treatment and Management (28) (e.g., “How is refractory status epilepticus treated?”), Causes (9) (e.g., “What is the most common cause of status epilepticus?”), Complications (7) (e.g., “What are the 5 major complications of status epilepticus?”), and Prognosis (4) (e.g., “Can you recover from status epilepticus?”). A small number of questions were uncategorized (10) (e.g., “Why is it called status epilepticus?”).

The most common themes for questions relating to SE were definition, signs, and symptoms, followed by treatment and management, causes, complications, then prognosis. Therefore, targeting patient education towards understanding SE and recognizing its signs and symptoms may represent an opportunity to improve care.