Epilepsy Surgery: Factors That Affect Patient Decision-Making in Choosing or Deferring a Procedure

Surgical resection for well-selected patients with refractory epilepsy provides seizure freedom approximately two-thirds of the time. Despite this, many good candidates for surgery, after a presurgical workup, ultimately do not consent to a procedure. The reasons why patients decline potentially effective surgery are not completely understood. We explored the socio cultural, medical, personal, and psychological differences between candidates who chose (n = 23) and those who declined surgical intervention (n = 9). We created a novel questionnaire addressing a range of possible factors important in patient decision making. We found that patients who declined surgery were less bothered by their epilepsy (despite comparable severity), more anxious about surgery, and less likely to listen to their doctors (and others) and had more comorbid psychiatric disease. Patients who chose surgery were more embarrassed by their seizures, more interested in being “seizure-free”, and less anxious about specific aspects of surgery. Patient attitudes, beliefs, and anxiety serve as barriers to ideal care. These results can provide opportunities for education, treatment, and intervention. Additionally, patients who fit a profile of someone who is likely to defer surgery may not be appropriate for risky and expensive presurgical testing. 1. Introduction Approximately one-third of patients with epilepsy will not attain seizure freedom through medications alone. If patients are not free of seizures after trying two different antiepileptic drugs (AEDs), their chance of relief from a third is between five and ten percent [1]. After multiple AEDs have failed, physicians often propose resective epilepsy surgery. In 2001, a randomized, controlled trial comparing temporal lobectomy to continued pharmacologic therapy found that 58% of the surgical group was seizure-free at one year, compared with 8% in the pharmacologic group [2]. These results have been replicated, and meta-analyses show that approximately two-thirds of patients are seizure-free at long-term followup after a temporal lobe resection [3, 4]. There are more candidates for epilepsy surgery than those who actually receive a procedure. There are many factors involved in this disparity: patients’ lack of access to comprehensive epilepsy surgery centers, low levels of referrals by physicians, and an unclear medical consensus regarding the appropriateness of recommending surgery versus continued AED treatment [5]. Even when referred to an epilepsy center, some good candidates for epilepsy surgery decline the procedure and