How Do You Learn About SUDEP?

In the span of less than two decades, SUDEP (sudden unexpected death in epilepsy) has gone from a seldom-mentioned, poorly understood tragic outcome of epilepsy to an emerging focus of research for clinicians and scientists. A review of PubMed reveals more publications on the topic of sudden death in epilepsy in the past five years than in the prior three decades. Significant private and federal research funding has been devoted to understanding the mechanisms of SUDEP.

In parallel with this growing scientific interest in SUDEP, there has been increased awareness of SUDEP among patients with epilepsy. Surveys performed in several countries suggest that most neurologists are not discussing SUDEP with the majority of their epilepsy patients, often for fear of causing distress. Instead, it is likely that many patients with epilepsy first hear about SUDEP on the Internet.

A recent study published by Brigo and colleagues in Epilepsy and Behavior found that Google searches for the phrase “SUDEP epilepsy” have increased 50-fold between 2004 and 2012. This means that many patients, while not explicitly told about SUDEP by their provider, will likely encounter information about it while learning about their own condition.

• While patients and caregivers are searching for it, where they click to learn about SUDEP is unknown.

• While many sources exist to learn about epilepsy in general and SUDEP in particular, how patients process the information presented on the most reputable websites, how well they understand their own (or family member’s) risk for SUDEP or how patients respond to their new knowledge is not known.

Neurologists could use the fact that many of their patients have read about SUDEP on the Internet to ensure that patients have the most accurate information about their personal risk and know what measures can reduce this risk.

• Simply asking what the patient or caregiver has read about epilepsy may be an opening for a discussion about the risks of epilepsy and seizures and about strategies to reduce those risks.

• For many patients, especially with well-controlled epilepsy or non-convulsive seizures, the discussion can be an opportunity to reinforce their low risk for SUDEP and reduce the anxiety that comes from reading about SUDEP after searching for information about a newly diagnosed seizure disorder.

The SUDEP Institute is actively working to improve both the quality of SUDEP information available to people with epilepsy as well as providing information and tools to help neurologists discuss the serious risks of SUDEP. In November, the Managing Epilepsy and Seizures infographic was released and is being distributed nationwide by neurologists and the Epilepsy Foundation affiliate network. More than 100,000 people have viewed it online. Through a partnership with AES, the SUDEP Institute is hosting the Talking about SUDEP Webinar series, which is designed to provide medical professionals with knowledge and understanding of the risks and examples of strategies for disclosing the risk for SUDEP.