Abstracts

Rationale: Although good candidates for epilepsy surgery often decline a procedure, even after having undergone a tedious and expensive presurgical evaluation, there is no study that quantitatively explores how much sociocultural, medical, personal, and neuropsychological factors affect patients decision-making for or against surgery. We sought to uncover the reasons why some candidates for surgery undergo a presurgical evaluation, are offered surgery but then decline the procedure. Our ultimate goal was to determine what issues should be addressed with these patients throughout presurgical evaluation to prevent unnecessary testing and help candidates make appropriate, evidence-based decisions. We had three hypotheses-- factors that would be different between surgery choosers and refusers. 1) Those refusing surgery were more frightened of some aspect of surgery, and this fear of surgery was a salient factor in their decision, 2) Those refusing surgery are more tolerant of their epilepsy, judging it not as disabling or dangerous as those who chose surgery, 3) We questioned whether we would find a cognitive or neuropsychological difference between those choosing and refusing surgery. Methods: To gain subjective information from participants regarding attitudes towards surgery, we developed a novel questionnaire. We gathered objective information through review of medical charts, pre-surgical imaging (PET & MRI), video-EEG results, and neuropsychological tests. An interview was completed either in person at our neurology clinic or over the phone, and took 15-60 minutes.Results: 23 post-surgery patients participated and 9 surgical refusers participated. There were several core factors that revealed significant differences between the two groups (Wilcoxen Ranksum p values): frequency and severity of seizures (p = .002), length of time with seizures (p = .031), the stigma of having epilepsy (p = .022), embarrassment from seizures in public (p = .037), the need/desire to be seizure-free (p = 0.000), and frustration with epilepsy (p = 0.000), general comfort with surgery (p = 0.019), fear of surgery in general (p = 0.005), fear of complications during surgery (p = 0.002), and concerns that my other health conditions may impact surgery (p = 0.045). There was also a significant difference for the chances of success quoted by the doctor (p = 0.040). Lastly, there was a difference across groups for 'belief that surgery would work' (p = 0.002). The non-surgical group cited surgical fears as more important that the surgical group.Conclusions: Our study provides differences between pre-surgical epilepsy patients who chose to have the procedure and those who opted against a proposed procedure. These differences are social, personal, and medical, and help create a profile of patients who will opt against a procedure despite medical need and physician recommendation. These results could aid in focusing on specific issues with patients who could benefit from surgery as well as prevent unnecessary pre-surgical evaluations for patients who are adamantly against surgery regardless of medical opinion.