Room for Improvement in Frontline Care of Psychogenic Nonepileptic Seizures
EXECUTIVE SUMMARY
Patients with psychogenic nonepileptic seizures (PNES) exhibit symptoms similar to epilepsy, but the underlying causes are different, requiring alternative treatment approaches. Experts note patients with PNES often are misdiagnosed, leading to potential treatment-related harm.
- The first step in treating a patient with PNES is making an accurate diagnosis. A combination of video EEG, patient history, and input from witnesses help.
- Many patients with PNES are inappropriately treated with anti-seizure medications, which can exacerbate PNES.
- Once a suspicion for PNES is established, the key is to calm the situation as much as possible and avoid causing treatment-related harm.
- Some patients with PNES report they have been treated dismissively in the ED. Frontline providers should establish a rapport with patients and families, and avoid using pejorative terms like “pseudo-seizures.”
Psychogenic nonepileptic seizures (PNES) can be frightening and debilitating. It is not uncommon for patients suffering from PNES to present to the ED for help. However, arriving at an accurate diagnosis in these cases can be tricky. Many patients with PNES are misdiagnosed, leading to frustration, morbidity, and (in many cases) harm related to inappropriate treatment.
Experts say a better understanding of how to differentiate PNES from epileptic or other types of seizures is crucial to progress in this area. They also note there is ample room for improvement in the way frontline providers respond to patients and families who arrive in the ED seeking help for a condition that is not well understood. The International League Against Epilepsy (ILAE) recognizes PNES as a top neuropsychiatric issue associated with epilepsy. Indeed, the presentation of PNES can appear quite similar to that of epileptic seizures. Both typically present with sudden, time-limited, changes in motor, sensory, autonomic, and/or cognitive signs and symptoms.1
However, what sets the two types of seizures apart are the causes, according to the guidelines. While epileptic seizures are attributed to “excessive and hypersynchronous discharges in the brain,” the underlying causes of PNES are psychological.
That is why an accurate diagnosis is a crucial first step in the treatment of PNES, according to W. Curt LaFrance, Jr., MD, MPH, FAAN, FANPA, DFAPA, director of neuropsychiatry and behavioral neurology at Rhode Island Hospital (RIH). However, he notes that too often, an accurate diagnosis does not take place.
“Many people are treated for presumed epilepsy inappropriately with anti-seizure medications when the patients actually have PNES,” says LaFrance, a professor of psychiatry and neurology at Brown University.
LaFrance adds that anti-seizure medications are not indicated for treating PNES, and the guidelines state that antiepileptic drugs may exacerbate the condition. “Video EEG is the gold standard for accurate diagnosis and it is underutilized to establish the diagnosis,” he adds.
The guidelines indicate that video EEG, in combination with patient history and input from witnesses, is essential in making a differential diagnosis, although experts acknowledge video EEG is unavailable in many locations.
Other factors that may help providers ascertain whether a patient may have PNES come from background information gleaned from research about the condition. For instance, LaFrance and colleagues reported that PNES most often presents in patients in their 20s and 30s, and three-quarters of patients suffering from PNES are women. They also noted that roughly half of patients with PNES report a precipitating or triggering event, and current or previous mental health or psychosocial problems are common in these patients.
Researchers observed that events tend to happen more frequently in patients with PNES than those with epilepsy, and that daily events are suggestive of PNES. Further, when stressful situations trigger events, that is suggestive of PNES, although surgery or physical trauma can set off a PNES disorder.
One complicating but important point researchers made is epilepsy itself is a risk factor for the development of PNES, and that both conditions are present in roughly 10% of patients diagnosed with PNES, according to estimates.
Benjamin Tolchin, MD, MS, an assistant professor of neurology at Yale, stresses that when it comes to identifying PNES no one factor is 100% sensitive or specific. “For example, semiological characteristics suggestive of psychogenic seizures include asynchronous movements, fluctuating course, eye closure, horizontal movements of the head and torso, and back arching/hip thrusting,” he explains.
Additionally, once a suspicion for PNES is established, the ED must calm the situation as much as possible and avoid causing treatment-related harm by inappropriately administering anti-seizure medications, sedatives, or intubation.
Tolchin urges emergency providers to take steps to facilitate a diagnosis in cases for which a definitive diagnosis has not been made.
“This usually involves a referral to neurology, typically leading to epilepsy monitoring unit-admission for spell characterization and/or psychiatry ... leading to long-term psychotherapy,” Tolchin notes. For cases in which patients have been definitively diagnosed with PNES, the next step is to facilitate psychotherapeutic treatment.
A central area of research for Tolchin has been nonadherence to treatment among patients with PNES, a factor that may be relevant regarding some patients who present to the ED with symptoms of PNES. Tolchin has found that as many as 60% of patients drop out of psychotherapy within 16 weeks, and that roughly 85% drop out within 18 months.
However, Tolchin stresses PNES patients who remain in treatment experience fewer seizures, enjoy a better quality of life, and tend to use the ED less often.
In a study, Tolchin found motivational interviewing (MI) can be useful in improving adherence to medical interventions for PNES, including medication and psychotherapeutic interventions. The technique is essentially used to make treatment initiation or adherence a patient decision rather than the decision of the provider, Tolchin observes. In his study, 60 patients with PNES were referred to psychotherapy, with half also randomized to receive 30 minutes of MI before psychotherapy commenced. At 16 weeks, 65% of patients in the MI group remained in psychotherapy, compared to just 31% of the control group.
Further, Tolchin reports the group that received MI reported significantly fewer seizures and a better quality of life. He adds that 31% of the MI group was seizure-free vs. just 11% of participants in the control group. Tolchin concludes that training healthcare professionals to use MI could provide significant benefits at a low cost.2
It is important for frontline providers to understand that patients suffering from PNES experience real symptoms and face potential morbidity, disability, and negative effects on quality of life. Many also suffer from treatment-related harm because of misdiagnoses. However, when these patients present to the ED, they are not always given the care they deserve.
“Patients from around the country and their family members often tell me of the dismissive treatment they receive in the ED,” LaFrance observes. “Establishing rapport with patients and their families by not using pejorative terms like ‘pseudo-seizures’ may help transition [them] to helpful management.”
REFERENCES
- LaFrance WC Jr, Baker GA, Duncan R, et al. Minimum requirements for the diagnosis of psychogenic nonepileptic seizures: A staged approach. A report from the International League Against Epilepsy Nonepileptic Seizures Task Force. Epilepsia 2013;54:2005-2018.
- Tolchin B, Baslet G, Suzuki J, et al. Randomized controlled trial of motivational interviewing for psychogenic nonepileptic seizures. Epilepsia 2019;60:986-995.
Psychogenic nonepileptic seizures (PNES) can be frightening and debilitating. It is not uncommon for patients suffering from PNES to present to the ED for help. However, arriving at an accurate diagnosis in these cases can be tricky. Many patients with PNES are misdiagnosed, leading to frustration, morbidity, and (in many cases) harm related to inappropriate treatment.
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