One in four people admitted to hospital for an epilepsy evaluation because they are experiencing uncontrolled seizures have psychogenic non-epileptic seizures (PNES), an Australian study has found.
And patients diagnosed with PNES have an almost three-fold higher mortality rate above the general population, dying at a rate comparable to those with drug-resistant epilepsy, according to Professor Terence O’Brien, Head, Department of Neuroscience, Monash University.
Published in Neurology, the findings for the psychiatric condition also known as “functional seizures” come from a retrospective cohort study of over 5500 patients evaluated in video-EEG monitoring (VEM) units at the Royal Melbourne, St Vincent’s, Alfred and Austin Hospitals between 1995 and 2015.
Of the 5,508 patients enrolled one in 8 (674 or 12.5%) were diagnosed with PNES, slightly more than half (3064 or 55.6%) with epilepsy, while 175 (3.2%) were found to have both conditions, and 1,595 (29.0%) received other diagnoses or had no diagnosis made.
The standardised mortality ratio (SMR) of patients diagnosed with PNES was 2.5 above that of the general population. Patients with PNES younger than 30 had an 8-fold higher risk of death, and direct comparison revealed no significant difference in mortality rate between diagnostic groups.
Among deaths in patients diagnosed with PNES (n = 55), external causes contributed 18%, with 20% of deaths in those younger than 50 years attributed to suicide, and “epilepsy” was recorded as the cause of death in 24%.
Amongst deaths in patients diagnosed with PNES, 20% of deaths in those younger than 50 years attributed to suicide, and “epilepsy” was recorded as the cause of death in 24%.
According to Professor O’Brien, the high mortality rate for people with PNES “emphasises the importance of prompt diagnosis, identification of risk factors, and the implementation of appropriate strategies to prevent potential avoidable deaths.”
He said PNES was often misdiagnosed by clinicians because of the similarity of the attacks to epilepsy, and treated inappropriately with anti-epileptic drugs even on occasions ICU admissions.
People with PNES often had a history of early life abuse, he noted, but their management often fell between cracks of neurologists and psychiatrists.
“Patients present to neurologists clinics and when diagnosed as not having epilepsy are usually discharged, but most psychiatrists are also unwilling to manage them because of its physical manifestations such as seizures,” he said.
“The condition is often under diagnosed, often inappropriately treated and those with it can struggle to find someone to treat it. To further confuse matters, up to one in five people with PNES also suffer from epilepsy.”
Professor O’Brien works with Dr Toby Winton-Brown, a neuropsychiatrist at Monash University and Alfred Health, who has started Australia’s first PNES Clinic in Australia at the Alfred Hospital. The clinic is so over-subscribed that it already has a greater than 6 months waiting list despite only being started for the last year.