Using artificial tools to collect and analyze conversations and comments about epilepsy posted online, researchers revealed that 7.8% of all posts by teenagers with epilepsy were related to suicide, compared with 3.2% of adult posts,1 according to study results presented at the American Epilepsy Society 2019 Annual Meeting, held in Baltimore, Maryland from December 6 to 10.
Previous studies have reported that roughly 30%-50% of patients with epilepsy may suffer from depression and the incidence of suicide in this population was found to be approximately 12%, which is 22% higher than the general population.2 The goal of the current study was to assess the major motivations for suicide thoughts among teenagers and adults with epilepsy, using artificial tools to analyze online conversations.1
The researchers collected data on 222,000 conversations from the USA internet protocol, posted in a 12-month period between September 2017 and September 2018. These posts were on message boards such as the Epilepsy Foundation, Medscape and social media (Facebook, Instagram, and Twitter) and included 181,000 posts by adults and 41,000 posts by teenagers.
Of those posts, 9000 (4%) were related to epilepsy and suicide2, including 8% of all posts by teenagers (3200 of 41,000 posts), and 3% of posts by adults (5800 of 181,000 posts). 1
Most of the teenagers with epilepsy (63%) expressed fear about the unknown in their posts, compared with a minority of the adults (12%).
Social consequences of seizures were discussed in 30% of posts by teenagers and 21% of posts by adults. Search for emotion support to deal with epilepsy was the focus of 29% of posts by teenagers, compared to 19% of adult posts. On the other hand, adults focused more on concerns regarding physical impairment secondary to seizures (29% of adult posts, compared to 21% of posts by teenagers). Furthermore, 42% of posts by adults expressed hopelessness, compared to 4% of post by teenagers.
“This first of its kind research highlights the differences in concerns and the shared sentiments among teenagers and adults suffering suicidality related to epilepsy”, concluded the researchers.
Of note, 77% of posts about suicide by teenagers with epilepsy were on message boards instead of social media platforms, which lead the lead author of this study Tatiana Falcone MD, a child and adolescent psychiatrist at the Epilepsy Center at the Cleveland Clinic to highlight that though “parents often fear overwhelming their child by providing too much information about the characteristics of epilepsy, but if teens don’t get answers they’ll go looking online, and sometimes that information is not correct or is incomplete.” She goes on to add that, “it’s important that teens know there is always hope, that knowledge is power and that the more they know, the better they can take care of themselves and their epilepsy.”
1. Falcone T, Timmons-Mitchell J. Artificial intelligence (AI) to understand suicidality among teenagers and adults suffering from epilepsy: The value of digital conversation to understand their mindset. Presented at: The American Epilepsy Society 2019 Annual Meeting; December 6-10, 2019; Baltimore, MD. Abstract 1.283.
2. Teens with epilepsy much more likely than adults to discuss suicide online social media offers opportunity to provide support, suggests big data study [news release]. Baltimore, MD: American Epilepsy Society; December 7, 2019. Accessed December 5, 2019.