Despite the very real chance of living a seizure-free life, many epilepsy patients with an excellent surgical prognosis continue to walk away from the procedures.
Researchers at the annual meeting of the American Epilepsy Society agreed: It’s not always easy to convince a patient with refractory seizures that removing part of his or her brain could be the best treatment option.
“Many times, you bring up the idea of surgery, and see a look of shock and horror,” Dr. Chad Carlson said in a press briefing. “Some are intrigued by the idea that their seizures could be reduced or even eliminated, but there is a real population who are either apprehensive or who flatly say: ‘You are not taking out a piece of my brain.’ ”
Dr. Carlson and his colleagues categorized 445 patients with intractable seizures into three groups, using a set of clinical characteristics predictive of surgical outcome. Grade 1 patients (110) had the highest likelihood of becoming seizure free.
“What surprised us was that only 43 of these patients went on to have surgery” at the center, he said. The attrition rate for epilepsy surgery is frustrating, especially in light of the outcomes for those who did have it. “At 18 months, 89% were completely free of seizures,” Dr. Carlson said.
In a second study examining why patients refuse surgery, Dr. Christopher T. Anderson, director of the epilepsy monitoring unit at the University of Pennsylvania, Philadelphia, discussed a cohort of 32 patients, all of whom were good surgical candidates and who underwent an intensive, year-long presurgical evaluation.
The process is time consuming, expensive, and not without risk, since some of the tests are invasive – electroencephalograms, high-resolution MRIs, positron emission tomography, the intracarotid sodium amobarbital procedure to localize the brain’s language center, and a comprehensive neuropsychological test battery. The evaluation costs up to $10,000, he added.
After completing the process, 9 of the 23 surgical candidates refused to go forward with the procedure. The review identified several characteristics that predicted both acceptance and rejection of surgery.
The patients were an average of 48 years; their epilepsy began at a median age of 22 years. Despite having tried a median of six drugs, the patients continued to have up to 10 or more seizures each month.
There were some significant between-group differences, which Dr. Anderson said could be used to predict which patients eventually would accept or refuse surgery. Easily treatable psychiatric disorders were some of the most striking. Nearly half (44%) of the refusers had anxiety and 11% had depression, compared with 4% for each disorder among the surgery group. In fact, Dr. Anderson said, most of those who accepted surgery (83%) had no psychiatric disorder.
“These problems are ones that are easily treatable, if not completely solvable,” he said.
Factors associated with the seizures themselves also influenced decision-making. Patients who had more seizures each month (average, 12) were more likely to accept the procedure than those with fewer seizures (average, 3).
Patients who perceived that their seizures seriously impeded their life also were more likely to accept surgery. “Those who thought of their seizures as very disabling or as a stigma, embarrassing, or dangerous were much more likely to opt for surgery,” Dr. Anderson noted.
Patients who deferred surgery were significantly more likely to have a general fear of surgery and surgical complications. “They cited a lack of comfort with surgery, complications with the surgery and anesthesia, and other health conditions that might affect surgery, like diabetes, hypertension, even though these are all easily managed in the operating room,” he said.
Some patients perceived the surgery as experimental and expressed worry about being a “guinea pig.”
“I think we need to try a lot more to educate patients on the safety of epilepsy surgery,” he said. “In no way is this experimental.”
The study drives home the point that some perceived barriers could be overcome with education and open communication. “We might want to look at interventions to help patients understand the surgery. Even a program of desensitizing patients to the operating room might help,” Dr. Anderson said.
Dr. Carlson, director of the Comprehensive Epilepsy Center’s video EEG lab at NYU Langone Medical Center, New York, faced a similar issue. The 39% of his cohort (43) who did have resection had excellent outcomes, but the rest of the patients were not ready to make the decision.
“Many of them did not even progress to our multidisciplinary conference, even though they were admitted for presurgical evaluation. At some point, 37% of the cohort (41) voted with their feet. They left and never followed up with us.”
Among this group were 25 who had become seizure-free during the observation time. Although the data say that this probably wouldn’t continue, they still decided not to pursue the surgery, Dr. Carlson said.
A small group (8) was not seizure free but decided that their seizure control was “good enough,” he said. “It wasn’t what an epileptologist would consider good control, but it wasn’t serious enough for those patients to have the surgery.”
The remaining patients were lost to follow-up or had no record of a specific reason for refusing surgery. Insurance denials only affected two patients who wanted surgery.
Some of those lost who were to follow-up probably eventually had surgery at another center. Patients seek multiple opinions “until they find one that they agree with” or a provider “clicks” with them, Dr. Carlson said.
Both researchers said that primary neurologists and other providers could help by getting the topic of surgery on the table earlier. “It’s something that should be done at multiple time points,” Dr. Anderson said. “Mention that they might be a candidate for brain surgery since medical therapy isn’t working well. Explain this means removal of part of the brain and ask what they feel about that – would they consider it if it would get rid of their seizures?
“If they hear this multiple times, then you are introducing this concept and revisiting it with more detailed information each time. Then the patient might be more willing to take that leap.”
Neither Dr. Anderson nor Dr. Carlson had any financial declarations.