BALTIMORE ― A small but significant percentage of epilepsy patients express and discuss their suicidal thoughts and behaviors online, thereby providing a potential opportunity for intervention.
In the first study of its kind, researchers used artificial intelligence (AI) to investigate suicidality in persons with epilepsy (PWE), a patient population that is at high risk for depression.
Investigators at the Cleveland Clinic in Ohio captured 222,000 conversations/comments that included suicide, suicidal thoughts, intent, plans, and attempts among individuals who suffered from epilepsy. Of these conversations, 41,000 were among teens; the remainder were among adults.
The results showed that teens were twice as likely as their adult counterparts to discuss suicide online.
Using AI to identify these conversations offers "a great opportunity" to provide teens with tools and resources, study coinvestigator Elia Pestana-Knight, MD, assistant professor of neurology, told Medscape Medical News.
Individuals who initiate conversations related to suicidal thoughts "can be redirected to places where they can get help," including patient support group Web sites and suicide prevention hotlines, she added.
The findings were presented here at the American Epilepsy Society (AES) 73rd Annual Meeting 2019.
High Rates of Suicidal Ideation
Previous research shows that about 32% of teens with epilepsy experience suicidal ideation, a figure that is 22% higher than in the general teen population, study coinvestigator Anjali Dagar, MD, research fellow in child and adolescent psychiatry, noted.
Approximately 30% to 50% of PWE suffer from depression, a risk factor for suicidal behavior, but not much is known about the major motivations for suicidal thoughts in this patient population, the investigators note.
To learn more, the researchers used CulturIntel, a data science and marketing firm that used AI tools to mine digital conversations about epilepsy. They conducted an Internet search for discussions among Americans between September 2017 and September 2018.
The search captured about 222,000 "unique" conversations.
The goal was to determine how many teens and adults were talking about suicide online. The AI "detectives" found that about 8% of posts by teens and 3% by adults were about suicidal thoughts.
Although this big-data analysis doesn't explain why so many more teens with epilepsy discuss suicide, it does suggest that they're dealing with a lot of issues, Dagar said.
Pestana-Knight pointed out that 29% of the posts by teens indicated they were looking for emotional support to deal with the impact of their illness. In adults, this figure was 19%.
In contrast, more of the adult posts than teen posts expressed concerns about physical impairments from seizures ― 29% vs 21%, respectively. In addition, fear of the unknown was discussed in 63% of teen posts and in 12% of adult posts.
The researchers also assessed which Internet sites were more popular among PWE.
"Before we started this project, we thought most of the conversations would be happening on social media, but this wasn't the case," Dagar said.
About 39% of the conversations were on message boards, and 38% were on topical or health-related sites. Only 19% of the discussions were on social media sites such as Facebook.
Message boards may be preferred because they provide more privacy than social media sites and posts on these boards may be less likely to be shared, Dagar noted.
However, she pointed out that all conversations were "open source" and did not take place behind a firewall. "We didn't invade anyone's privacy. These conversations were openly available to everyone," she said.
Hearing From the Unheard
Commenting on the findings for Medscape Medical News, Daniel M. Goldenholz, MD, PhD, Beth Israel Deaconess Medical Center and Harvard Medical School, Boston, Massachusetts, said the study was "interesting" because of its "massive scale."
"As more of the world's population develops a presence online and more languages become easily translatable, previously unheard voices can participate in meaningful conversations about the most important problems subgroups within epilepsy face. This study is part of that trend," said Goldenholz, who was not involved with the research.
However, he noted his concern that such studies may not use proper controls to ensure that the information collected reflects the sentiments of target groups.
"Younger people today are more likely to share private information on social media, and older people are less likely to do so. As a result, one may incorrectly assume that younger people posting more about something reflects an age divide, when in fact it reflects more typical modes of communication among specific age groups," he said.
Goldenholz added that he would like to see a clarification of the accuracy and scientific validation of the methodology used to collect the data.
Also commenting for Medscape Medical News, Michael Privitera, MD, director of the Epilepsy Center and professor at the University of Cincinnati Gardner Neuroscience Institute, noted that the study highlights "a new method to detect how people with epilepsy are expressing their feelings and needs."
Clinicians have typically gathered this information through direct patient interviews or surveys, but patients may be less willing to reveal certain emotions using these methods, said Privitera.
Analyzing online content "opens a new door to understanding some of these emotions, and in the case of suicidality, a measure of the well-being and potential mortality of our patients," he said.
However, such analyses do have drawbacks, including not providing "a full picture" of the patient, Privitera concluded.
The study was funded by Project IMPACTT (Integrating Mobile Provider Access for Telemedicine and Transition) and the Health Resources and Services Administration. The study authors, Goldenholz, and Privitera have disclosed no relevant financial relationships.
American Epilepsy Society (AES) 73rd Annual Meeting 2019: Abstract 1.283. Presented December 7, 2019.
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Cite this: AI Sheds New Light on Suicidality in Epilepsy - Medscape - Dec 11, 2019.