Social, personal, and medical concerns help determine whether patients choose or defer surgery for epilepsy.
BALTIMORE—Approximately 44% of patients with epilepsy who undergo a presurgical evaluation but decline epilepsy surgery have an anxiety disorder, according to a study presented at the 65th Annual Meeting of the American Epilepsy Society.
In contrast, about 4% of patients who elect to have epilepsy surgery have an anxiety disorder. Other psychiatric disorders are correlated with patients’ decision to decline surgery as well. For example, 66.7% of patients who refuse surgery have comorbid depression, compared with 52.2% of patients who choose to have surgery. These were the findings of a study conducted by Christopher Todd Anderson, MD, Director of the Epilepsy Monitoring Unit at the Hospital of the University of Pennsylvania in Philadelphia, and Eva Noble, a researcher at Johns Hopkins Bloomberg School of Public Health in Baltimore.
Asking Patients for Answers
To determine whether they would benefit from epilepsy surgery, patients must undergo a long and expensive evaluation process that includes several scans, in-patient recording of seizures, and hours of neuropsychologic tests. The reasons that good candidates for surgery sometimes refuse the procedure were not well understood, Dr. Anderson told Neurology Reviews. No previous study had investigated why certain patients undergo testing but refuse the actual surgery, and Dr. Anderson and his colleagues decided to ask the patients themselves.
The researchers developed a questionnaire and administered it to 32 patients who had undergone a presurgical evaluation. Of the patients, 23 had decided to have surgery, and nine had refused. The patients’ ages ranged from 32 to 56, and they had had seizures for nine to 35 years.
The questionnaire asked patients for demographic information (eg, place of residence, marital status, employment status, and comorbid conditions) and information about the severity, frequency, and duration of their seizures. The questionnaire also asked patients to rate the importance, on a scale of 0 to 4, of various factors on their decision whether to have epilepsy surgery. These factors included the embarrassment caused by seizures in public, the general fear of surgery, physicians’ predictions about the chance that surgery will be successful, and patients’ personal beliefs.
In addition to the questionnaires, the investigators gathered information from documents such as patients’ medical charts, video EEG results, and neuropsychologic tests. They also interviewed each patient in person or on the phone for 15 to 60 minutes.
Fears Are an Obstacle to Treatment
Besides the greater prevalence of comorbid psychiatric disorders among patients who refused surgery, the researchers found differences in the relative importance of certain factors to the decisions about surgery that the two groups made. The frequency and severity of seizures, the stigma of having epilepsy, and frustration with epilepsy were more important factors to patients who had surgery than to those who did not. The majority of patients who had surgery (52.2%) had had 10 or more seizures per month, but a plurality of patients who refused surgery (44.4%) had one to three seizures per month.
Factors related to surgery, including general fear of surgery, general comfort with surgery, fear of complications during surgery, and concerns that other health conditions might affect surgery, were more important to patients who refused surgery than to those who chose it. The majority of patients who refused surgery had a prior surgical history, but 88.9% of these patients had not had a bad experience with surgery.
A Need for Knowledge and Dialogue
Epilepsy can be treated with medications, lifestyle modifications, hormonal therapy, and medical devices, as well as surgery. After discussing the options with a patient, a clinician should treat him or her in as many ways as possible, depending on what is appropriate and what the patient’s preferences are, said Dr. Anderson. Asking a patient questions similar to those in the questionnaire could help a physician decide whether to encourage a patient to have surgery.
“I think that not enough neurologists, or people in medicine in general, know how successful epilepsy surgery can be,” added Dr. Anderson. Patients should be educated about the types of surgery that have been proven in randomized, controlled trials, such as anterior temporal lobectomy, which “typically works better than medications alone for patients who are chosen well,” he said.
The questionnaire revealed that many patients with epilepsy have other medical problems that could be managed or resolved. “It’s a shame to let a patient have an anxiety disorder go untreated and miss an opportunity at epilepsy surgery who has a chance of getting rid of his or her seizures for years,” said Dr. Anderson.