Results of a study presented at the American Epilepsy Society Annual Meeting December 6-10, 2019 in Baltimore, MD show that teens with epilepsy are more than twice as likely as adults with the condition to talk about suicide online. The data suggests that teens are concerned with the unknown aspects of the illness.
Other studies show the incidence of suicide among people with epilepsy is 12%, which is 22% higher than the general population. Teens worry when they can’t figure out new symptoms or a change in the pattern of their seizures—that fear may perpetuate stress and contribute to depression and suicidal thoughts.
Researchers used artificial intelligence tools to collect and analyze 222,000 conversations and comments about epilepsy that were accessible to the public.
They assessed 181,000 adult posts and 41,000 teen posts on message boards such as the one provided by the Epilepsy Foundation, websites such as Medscape, and social media sites such as Facebook, Instagram, and Twitter.
More than 3 out of 4 (77%) of the posts about suicide by teenagers occurred on message boards and topical sites rather than social media.
Of all the posts, 9,000 (4%) were related to epilepsy and suicide. Of the posts by teens, 3,200 (7.8%) were related to epilepsy and suicide compared to 5,800 (3.2%) adult posts.
Other findings include:
• 63% of posts by teens expressed fear about the unknown vs. 12% of posts by adults
• 30% of posts by teens discussed social consequences of seizures vs. 21% of posts by adults
• Teenagers sought emotional support in 29% of their posts vs. 19% of adults in their posts
• Conversely, 46% of adults expressed helplessness vs. 33% of teens
• 42% of adults expressed hopelessness vs. 4% of teens
“Parents often fear overwhelming their child by providing too much information about the characteristics of epilepsy, but if teens don’t get the answers they’ll go looking online, and sometimes that information is not correct or is incomplete,” said Tatiana Falcone, MD, child and adolescent psychiatrist at the Epilepsy Center, Cleveland Clinic. “The fact that teenagers are still seeking information and haven’t given up suggests we have a window of opportunity for providing them supportive and therapeutic information. Social media-based outreach programs could have a significant impact on suicide prevention among teens, who clearly are motivated to improve their well-being. It’s important that teens know there is always hope, that knowledge is power and the more they know, the better they can take care of themselves and their epilepsy.”
F. Stephen Benesh, MD, and Shruti P. Agnihotri, MD
Peter McAllister, MD
Fabio Fieni Toso, MD; Rene de Araújo Gleizer, MD; and Lívia Almeida Dutra, MD, PhD