Dissociative seizures, also called functional and non-epileptic 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 dissociative seizures 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 dissociative seizures have a marked increase in health service use.
In the largest treatment trial to date for dissociative seizures, 368 patients from centres across England, Scotland, and Wales were followed up 6 months and 12 months after treatment courses began. Researchers found patients treated with dissociative seizure specific CBT alongside standardised 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 standardised medical care alone.
We have delivered the first large-scale multi-centre and multi-professional trial investigating treatments for adults with dissociative seizures. This is especially important as the availability of treatment for people with this disorder has been so variable in the UK and elsewhere.– Lead author Laura Goldstein, Professor of Clinical Neuropsychology at the Institute of Psychiatry, Psychology & Neuroscience (IoPPN), King’s College London
While overall there appeared to be a reduction in how often people in both groups of the study were having dissociative seizures at the end of the trial, with no clear difference between the groups, the group who had received our package of dissociative seizure-specific CBT were reporting better functioning across a range of everyday situations. They described their dissociative seizures 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 standardised care pathway for people with dissociative seizures. 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 specialised centres and can be delivered by a range of clinical psychologists or cognitive behavioural 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.”
With appropriate training and supervision, we now have evidence for the effectiveness of dissociative seizure specific CBT combined with standardised 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.– Co-investigator Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy at IoPPN