HOUSTON — A new study shows a very high rate of dropout from cognitive-behavioral therapy (CBT) among patients with psychogenic nonepileptic seizures (PNES), with almost 90% of patients not attending the fourth follow-up appointment.
A prior diagnosis of PNES was the main risk factor for nonadherence to CBT, and a higher score on the Bereaved Illness Perception Questionnaire (BIPQ) — indicating higher concern about their illness — predicted better adherence, the researchers found. Preliminary data also suggest that adherence to therapy reduces seizure frequency in these patients.
"Neurologists diagnosing PNES, and behavioral health specialists treating the condition, need new interventions to improve adherence with treatment and to prevent long-term disability," said Benjamin Tolchin, MD, a clinical neurophysiology fellow at Brigham and Women's Hospital, Boston, Massachusetts.
One potential intervention to improve adherence might be the use of text message reminders, said Dr Tolchin.
He presented the findings at a platform session during the American Epilepsy Society (AES) 2016 Annual Meeting. His work received the Rebecca Goldberg Kaufman Honor, awarded to the highest-ranking abstract in the category of comorbidities.
PNES is a relatively common condition; 25% to 40% of patients admitted to epilepsy monitoring units are ultimately diagnosed with it, Dr Tolchin said.
It's also highly disabling. Most patients with PNES are economically and socially dependent, frequently visit emergency departments, and incur high medical care costs.
Multiple studies have shown that CBT is effective in reducing seizure frequency and improving quality of life for patients with PNES. Despite this evidence, however, most patients don't receive effective therapy.
For the current study, Dr Tolchin and colleagues prospectively followed 123 patients, mean age 38 years, who were newly diagnosed with video electroencephalography–confirmed PNES. About 85% were female and 77% were white and non-Hispanic.
About a third of the sample was single and another third was married. The rest were split evenly between divorced patients and those living with partners.
Notably, 61% of the sample was unemployed, most of whom were on disability. Only 8% worked full time.
Seizure Frequency
The psychogenic seizure frequency rate among the sample varied from 0 to 350 per week (median, 2). "This means that most subjects were having 1 or 2 seizures per week, but there were a few outliers having literally hundreds of psychogenic seizures per week," said Dr Tolchin.
The rate of delayed diagnosis also varied substantially: from 0 to 51 years (median, 1 year). Again, there were a few outliers who weren't diagnosed for decades, said Dr Tolchin.
Just over a third (37%) of patients had been diagnosed with PNES before. About 94% had at least one psychiatric comorbidity, most commonly depression, anxiety, or post-traumatic stress disorder. Just under a third had a personality disorder; 23% had a history of at least one suicide attempt; 39% had been hospitalized for a psychiatric condition; and 74% had a history of physical, sexual, or emotional abuse.
After their diagnosis, patients were referred for psychotherapy for a period of at least 12 weeks and scheduled for a minimum of four regular visits with a psychiatrist.
The study found that adherence to treatment fell steadily over the course of 18 months. About 80% of the patients attended their first postdiagnosis psychiatric appointment, but that fell to 42% for the second visit and 24% for the third visit. Only 14% were still adherent at the fourth visit.
"This level of nonadherence is dramatically worse than appreciated among most neurologists and behavioral health specialists caring for patients with PNES," said Dr Tolchin.
Researchers examined potential risk factors for nonadherence, including psychogenic seizure frequency, delay to diagnosis, history of a prior diagnosis of PNES, psychiatric comorbidities, history of abuse, and illness perception as measured by the BIPQ (a validated 80-point scale, with 0 indicating no concern about their illness and 80 the greatest concern).
The analysis uncovered two covariates with a statistically significant correlation with dropout from psychiatric treatment. A prior diagnosis of PNES was associated with increased odds of leaving therapy (hazard ratio [HR], 1.57; P = .047), and a higher score on the BIPQ correlated with decreased odds of dropout (HR, 0.77 for every 10-point increment on the scale; P = .008).
A history of substance abuse trended to a greater risk for drop-out but didn't reach statistical significance.
Outcome Impact
The researchers are now following up on these patients to determine whether nonadherence is associated with worse outcomes in terms of seizure frequency, quality of life, and healthcare utilization.
So far, they have data on 59 patients. Among nonadherent patients, 61% had a 50% or greater reduction in seizure frequency from baseline to 24 months. This compares to 90% in the adherent group.
"Based on this preliminary data, adherence to treatment does appear to correlate with greater improvement in seizure frequency," said Dr Tolchin.
Asked by a delegate whether patients didn't come back for appointments because they felt "cured," Dr Tolchin said this is an "important question." That is precisely what is now being studied, he noted, with preliminary findings showing that this is not the case.
Another session attendee inquired about the profile of patients who were adherent throughout the study. In addition to most having a 50% or greater reduction in seizure frequency, those adherent to therapy also appear to have a "substantial" improvement in quality of life, said Dr Tolchin.
"Is that because they were getting all this CBT or because they were initially less sick?' he speculated. "We are working on studies that might get at that, but we can't answer that with this data."
Dr Tolchin received research support from the American Academy of Neurology and the American Brain Foundation.
American Epilepsy Society (AES) 2016 Annual Meeting. Abstract 1.247. Presented December 5, 2016.
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Cite this: CBT Nonadherence Common in Patients With Psychogenic Seizures - Medscape - Dec 14, 2016.
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