Baltimore– Epilepsy surgery is safe, effective and often curative in selected candidates. Although candidates for epilepsy surgery in the United States are estimated between 100,000 and 200,000, fewer than 5,000 such surgeries are conducted each year. There may be many causes of this disparity, including an unexplained low level of referrals by physicians and choices made by patients themselves. Two studies investigating why patients choose to defer or forego epilepsy surgery were presented at the American Epilepsy Society’s 65th annual meeting.
Investigators at New York University’s Langone Medical Center looked into potential medical and social barriers to resective epilepsy surgery in patients following pre-surgical evaluations that showed a high likelihood of achieving seizure freedom. A similar study conducted by investigators at the University of Pennsylvania explored the socio-cultural, medical, personal, and neuropsychological factors affecting patient decision-making for or against epilepsy surgery.
In a retrospective analysis of patients admitted to the epilepsy monitoring unit at their medical center between January 2007 and July 2008, the NYU team identified 110 patients who were good candidates for resective surgery based upon neuroimaging, electroencephalography, clinical semiology and IQ. Only 45 patients (41%) out of this group underwent surgery. Of the 65 (59%) that did not undergo invasive monitoring or resective surgery within the follow-up period, 14 (22%) were seizure free at last follow-up. Surgery was clearly declined by 10 patients (15%) and another 12 patients had no further discussion of surgery after the initial evaluation.
“Multiple factors can contribute to patients failing to pursue epilepsy surgery,” says lead author Chad Carlson. “Over one-half of patients in our study declined surgery due to seizure freedom, perceived adequate seizure control, or having no desire to pursue surgery despite continued seizures.”
To gain insight into patient attitudes toward epilepsy surgery, investigators at the University of Pennsylvania Penn Epilepsy Center developed a questionnaire to survey both post-surgery patients and surgery refusers, and also reviewed their medical charts and pre-surgical test results. Among core factors they found to affect patient decisions for or against surgery are frequency and severity of seizures, length of time with seizures, the stigma of having epilepsy, embarrassment of seizures in public, the need/desire to be seizure free and general comfort with or fears concerning surgery.
The chance of surgical success quoted by the doctor, and having a personal belief that surgery would work were also found to be significant.
“Our study has documented differences between surgical candidates who choose to have epilepsy surgery and those who opt against a proposed procedure,” says Christopher Todd Anderson, the primary investigator. “The results could aid in focusing on specific issues with patients who could benefit from epilepsy surgery, and, importantly, prevent unnecessary pre-surgical evaluations of patients who are adamantly opposed to surgery regardless of medical opinion.”
Another study regarding epilepsy care, lead by Dr. Sandra Helmers, conducted two surveys to investigate the barriers to epilepsy care. Dr. Helmers is on the Epilepsy Foundation’s Professional Advisory Board. Two surveys of 63 physicians and about 700 patients that were posted on our website and the American Epilepsy Society’s website. The surveys identified underinsurance, lack of insurance, transportation issues, cost, memory problems, poor doctor-patient communication, and patients’ lack of understanding about epilepsy and their educational level as barriers to optimal epilepsy care.