Frank Gilliam, M.D., M.P.H., Director of Columbia's Comprehensive Epilepsy Center, wants to change physicians' attitudes about epilepsy. Though epilepsy accounts for more outpatient visits to neurologists than any other illness, it is often undertreated in the United States, where about 40 percent of patients still experience seizures despite medication. Many of these patients could be cured with surgery, but they typically don't come into the center for evaluation until they've lived with active epilepsy for an average of 18 years. "It's a bizarre situation," Dr. Gilliam says. "If this was the standard of care in cardiology, I think the cardiologists would be camped out in the ER in protest." It is these patients with uncontrolled epilepsy who are the focus of Columbia's epileptologists.
Before arriving at Columbia in November 2004, Dr. Gilliam was the director of the adult epilepsy center at Washington University in St. Louis for five years and an assistant professor of neurology at the University of Alabama at Birmingham where he began to gain a national reputation.
"He is one of a very select and small group of outstanding academic neurologists who are rapidly becoming major leaders in the epilepsy field," says Tim Pedley, M.D., chairman of neurology. "Columbia's epilepsy center has been energized in the few months since his arrival. Simply put, Dr. Gilliam is one of the most outstanding academic epileptologists of his generation." InVivo's Susan Conova spoke with Dr. Gilliam about his perspective on epilepsy.
In a paper published last year, you wrote that epilepsy is closer to spinal cord injury than to many other chronic illnesses such as diabetes or hypertension. What did you mean by that?
When I say that having epilepsy may be closer to spinal cord injury than to a chronic disease like, say, diabetes, it's because when someone is diagnosed with diabetes he or she is educated about how to comply with treatment to prevent future disability. Whereas at the time of an epilepsy diagnosis, the patient is actually deprived of a fundamental ability the ability to drive. Think about the limits on employment and social life that not being able to drive places on someone. That's why I say that in terms of disability, epilepsy may be closer to spinal cord injury than to diabetes or hypertension.
What are the risks of recurrent seizures and are patients aware of the risks?
Of the estimated 2.5 million people in the United States with epilepsy, the disease is controlled in about 50 to 60 percent; these people report no significant disability or problems with their medication. That leaves about 40 percent who have recurrent seizures, which means in most states they cannot legally drive a car. They suffer the social embarrassment of intermittent seizures in public, they suffer work limitations, and some have substantially high medication toxicity problems or mood disorders that diminish quality of life. And, finally, mortality in this group although this is an area that has limited research looks like 0.5 to 1.5 percent a year, which is higher than diabetes for every decade of life.
The average person we evaluate for epilepsy surgery in our center has had recurrent seizures, uncontrolled by medication, for about 20 years. Most of them say no one had ever discussed the real risks of their recurrent seizures or offered them treatment options.
Why do you think it takes so long for patients who can't control their seizures with medication to get better treatment?
It's not that the neurological and general medical community doesn't understand that surgery can be highly beneficial. Resective surgery has a higher success rate with lower morbidity than any other surgical procedure in neuroscience that I'm aware of.
The problem is that most neurologists don't think a patient who has two or three complex partial seizures a month is a candidate for surgery. Unlike epilepsy specialists, they don't perceive that as refractory epilepsy. This is why I've stopped using the term refractory, because when the general neurologist thinks about refractory epilepsy, he or she thinks about the child who has 20 seizures a day.
My bottom line is: If you're not legally driving a car, you're a candidate for epilepsy surgery. That could be one seizure every three months, which very few neurologists would call refractory epilepsy. Neurologists think very quantitatively, but I feel strongly that the goals of treatment should be determined in close collaboration with the patient. Most patients want to drive a car and be free of the restrictions related to seizures, and if we're not achieving that we need to consider all alternatives. One reason surgery is not offered earlier in care is that the patient's goals are not considered.
Lately your research has focused on depression. Are patients being evaluated and treated, or is the problem under-recognized?
Depression has gained attention in the past few years as a real issue in epilepsy, and we're finding it affects about 40 percent of those with active epilepsy. Last year we surveyed a group of neurologists and found that 80 percent do not routinely screen patients for depression, but they would if a randomized controlled trial showed that treatment improved quality of life. I became interested in depression during a large NIH-funded study we had at the University of Alabama of the benefits of temporal lobectomy. About three years after surgery, depression was the strongest predictor of how the patients rated their health. That's not news in itself, because for any illness depression is associated with worse outcomes, but what surprised us was depression was a stronger predictor than being seizure-free.
But it's not clear how these patients should be treated for depression. There's a fear based on case reports that some antidepressants lower seizure threshold and actually worsen epilepsy. And by adding another CNS-active drug on top of antiepileptic drugs, we may increase toxicity of the treatment regimen.
Based on that data we've designed a clinical trial to answer these questions and define optimal treatment of depression in epilepsy by comparing sertraline, a common antidepressant, with cognitive behavioral therapy. We're now about halfway through and have enrolled about 100 patients.
There are 10 to 15 other investigators in the country who are also interested in depression, and there's real momentum now to learn the extent of the problem and how to effectively address it. It's very exciting and something I'm very optimistic about.