Adolescents with psychogenic non-epileptic seizures (PNES) experience severe bullying by fellow students and school staff alike, results of a small study suggest.\
The school experience of teens with PNES is overwhelmingly negative, study investigator Andrea Tanner, PhD, postdoctoral fellow, Indiana University School of Nursing, Indianapolis, told Medscape Medical News.
She hopes this research will spur a collaborative effort between students, schools, families, and healthcare providers "to develop an effective plan to help these adolescents cope, to manage this condition, and hopefully reach seizure freedom."
The findings were presented at the American Epilepsy Society (AES) 75th Annual Meeting 2021.
Although psychogenic seizures resemble epileptic seizures, they have a psychological basis and, unlike epilepsy, are not caused by abnormal electrical brain activity.
While the school experience has previously been identified as a source of predisposing, precipitating, and perpetuating factors for PNES, little is known about the school experience of adolescents with the disorder and the role it may play in PNES management, the investigators note.
During her 20 years as a school nurse, Tanner saw first hand how school staff struggled with responding appropriately to teens with PNES. "They wanted to call 911 every time; they wanted to respond as if it was an epileptic seizure."
For the study, she interviewed 10 teens with PNES, aged 12 to 19 years, whom she found mostly through Facebook support groups but also through flyers. All participants had undergone video EEG and been diagnosed with PNES.
From the interviews, Tanner and colleagues conducted a qualitative content analysis and uncovered "overarching" themes.
A main theme was stress, some of which focused on bullying by peers or harassment by school personnel, much of which was related to accusations of the children "faking" seizures to get attention, said Tanner.
Some teens reported being banned from school events, such as field trips, out of concern they would be a "distraction," which led to feelings of isolation and exclusion, said Tanner.
Research points to a growing incidence of PNES among adolescents. This may be because it is now better recognized, or it may stem from the unique stressors today's teens face, said Tanner.
Adolescents discussed the pressures they feel to be the best at everything. "They wanted to be good in athletics; they wanted to be good in academics; they wanted to get into a good college," said Tanner.
Some study participants had undergone psychotherapy, including cognitive-behavioral therapy, and others had investigated mindfulness-based therapy. However, not all were receiving treatment. For some, such care was inaccessible, while others had tried a mental health care intervention but had abandoned it.
Although all the study participants were female, Tanner has interviewed males outside this study and found their experiences are similar.
Her next research step is to try to quantify the findings. "I would like to begin to look at what would be the appropriate outcomes if I were to do an intervention to improve the school experience."
Her message for doctors is to see school nurses as a "partner" or "liaison" who "can bridge the world of healthcare and education."
Important, Novel Research
Commenting on the research for Medscape Medical News, Barbara Dworetzky, MD, Chief, Epilepsy, Brigham and Women's Hospital, and professor of neurology, Harvard Medical School, said it's "important and novel."
The study focuses on the main factors ― or themes ― that lead to increased stress, such as bullying, isolation, and "not being believed," that are likely triggers for PNES, said Dworetzky.
The study is also important because it focuses on factors that help make the girls "feel supported and protected," for example, having staff "take the episodes seriously," she said.
The study's qualitative measures "are a valid way of understanding these girls and giving them a voice," said Dworetzky. She added the study provides "practical information" that could help target treatments to improve outcomes in this group.
A limitation of the study was that the very small cohort of teenage girls was selected only through families in Facebook support groups or flyers to school nurses, said Dworetzky.
"There are likely many other groups who don't even have families trying to help them. Larger cohorts without this type of bias may be next steps."
American Epilepsy Society (AES) 75th Annual Meeting 2021: Abstract 2.334. Presented December 5, 2021.
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Image 1: Chris Tanner
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Cite this: New Insight Into Psychogenic Seizures in Teens - Medscape - Dec 07, 2021.