Scientists have found that adding cognitive behavioral therapy (CBT) to standardized medical care gives patients with psychogenic nonepileptic seizures (PNES) longer periods of seizure freedom, less bothersome seizures and a greater quality of life, in a study published in Lancet Psychiatry today and by the Cognitive behavioral therapy for adults with PNES study group funded by National Institute for Health Research (NIHR).
PNES, also called dissociative seizures, look similar in appearance to epileptic seizures or fainting but are related to a different type of involuntary blackout that is typically distressing and disabling for patients and their carers. Up to 1 in 5 adults presenting in epilepsy clinics have this hidden condition which is one of several types of Functional Neurological Disorder (FND). Historically patients with PNES have often been ignored or disbelieved by doctors and research on treatment is limited. They are more likely to be found in women and usually have a poor outcome with a worse quality of life than people with epilepsy alone. People with PNES have a marked increase in health service use.
In the largest treatment trial to date for PNES, 368 patients from centers across England, Scotland, and Wales were followed up 6 months and 12 months after treatment courses began. Researchers found patients treated with PNES specific CBT alongside standardized medical care reported the highest number of consecutive dissociative seizure-free days in the previous 6 months, along with greater functional status, self-rated and doctor-rated change in global impression scores, and satisfaction with treatment when compared with standardized medical care alone.
Lead author Laura Goldstein, Professor of Clinical Neuropsychology at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN), King’s College London said, “We have delivered the first large-scale multi-center and multi-professional trial investigating treatments for adults with PNES. This is especially important as the availability of treatment for people with this disorder has been so variable in the UK and elsewhere.
While overall there appeared to be a reduction in how often people in both groups of the study were having PNES at the end of the trial, with no clear difference between the groups, the group who had received our package of PNES-specific CBT were reporting better functioning across a range of everyday situations. They described their PNES as less bothersome, they were less distressed, reported better health and fewer symptoms, and were more satisfied with their treatment. It is important to consider providing dissociative seizure-specific CBT in addition to specialist care from neurologists and psychiatrists to treat people with dissociative seizures.”
In the UK, there is currently no standardized care pathway for people with PNES. The researchers recommend the incorporation of seizure-specific CBT within specialist care from neurologists and psychiatrists. Furthermore, as participants received treatment in varied medical settings, this study suggests that the CBT combination intervention does not have to be limited to highly specialized centers and can be delivered by a range of clinical psychologists or cognitive behavioral psychotherapists. Researchers suggest future work is needed to identify which patients would benefit most from a dissociative seizure-specific CBT approach.
Neurologist, Professor Jon Stone, who was a co-investigator in the study said, “The CODES Trial is a landmark study for a condition which has, for too long, been ignored by health services. The trial has encouraged participating neurologists, psychiatrists and psychotherapists across the UK to raise their standard of care for these patients. The trial has set a new bar for evidence in this area, making it clear that there are thousands of new patients with this condition in the UK every year who we need to keep doing better for in terms of treatment and research in the future.”
Co-investigator Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy at IoPPN, said, “With appropriate training and supervision, we now have evidence for the effectiveness of PNES specific CBT combined with standardized medical care. This is good news for patients who have often felt misunderstood and health care professionals (HCP’s) who have wanted guidance on best practice.”
Notes to editors
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Further information about Dissociative Seizures
To find out more about Dissociative Seizures and the umbrella condition, Functional Neurological Disorder you can read more at
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