The death rate for patients with functional, non-epileptic seizures is higher than expected, with a rate comparable to epilepsy and serious mental illness, a Michigan Medicine study finds.
A team of researchers looked at data from 700 patients diagnosed with functional seizures, also called psychogenic or non-epileptic seizures, from 2014 to mid-2023 and followed for a median of 15 months.
It is the largest study of its kind in the United States, matching international studies in Australia, Denmark, Sweden and the United Kingdom, which have nationalized health care systems.
Of the 700 patients with functional seizures, 11 of them died -? a death rate nearly 2.5 times greater than the number of people who would be expected to die in the same time period among similar people without functional seizures.
The results are published in Neurology: Clinical Practice.
“Functional seizures have long been stigmatized among healthcare professionals, and our results underscore the serious nature of the diagnosis,” said senior author Nicholas J. Beimer, MD, clinical associate professor in the Departments of Neurology and Psychiatry at UM Medical School.
“The results show that the stigma of this disease not being relevant or serious to healthcare professionals can clearly be dismissed, as well as the need to improve access to care for this population.”
The death rate, the researchers found, was comparable to patients with epilepsy and serious mental health conditions, including schizophrenia and depression.
Almost all patient deaths in the registry had a known cause related to comorbid functional crises, such as stroke, neurodegenerative disease, and cancer.
All patients who died in our study had significant medical comorbidities, and this should encourage us to care for patients with functional crises from a holistic perspective, considering both their mental health and their medical condition simultaneously rather than separately.”
Elissa H. Patterson, Ph.D., co-author, clinical assistant professor of psychiatry at the UM School of Medicine
Our health care system in the United States routinely separates mental and physical health into different silos, and it shouldn’t be that way, says co-author G. Scott Winder, MD, M.Sc., clinical associate professor of psychiatry at UM School of Medicine.
The first death of the patients studied occurred just over five months after they were referred for care. The researchers suggest that access to holistic, multidisciplinary treatment for functional neurological disorders needs to be improved so that treatment can start earlier for patients.
“Because of the limited number of health care centers with multidisciplinary clinics dedicated to the assessment and treatment of functional crises, this research should motivate current clinics to increase capacity and meet these time-based goals, as well as to encourage other centers to establish new treatment clinics for this serious condition,” said Najda Robinson-Mayer, LMSW, a clinical social worker at UM Health who co-facilitates the Psychogenic Nonepileptic Seizure/Functional Seizure Teletherapy Team in the Department of Neurology .
“We recently created a virtual group therapy program for functional seizures so that patients can begin treatment within weeks of diagnosis, rather than months.”
Functional seizures are often misdiagnosed as epilepsy. Many patients are treated for epilepsy for years before receiving the correct diagnosis.
“Not only does early diagnosis and treatment have the potential to improve outcomes for people living with functional seizures, but it will also greatly reduce the chance of being treated with expensive anticonvulsant drugs that won’t work for their condition,” said the first author. Wesley T. Kerr, MD, an assistant professor of neurology at the University of Pittsburgh Medical Center who was working at UM Health at the time the study was conducted.
“The goal is to get these patients the right treatment and as soon as possible.”
Source:
Journal Reference:
Kerr, WT, et al. (2024). Increased mortality in patients with functional seizures after diagnosis and referral. Neurological Clinical Medicine. doi.org/10.1212/cpj.0000000000200227.
