Abstracts

Rationale: To investigate the incidence of mortality in a refractory epilepsy population followed prospectively. Methods: In 2000, we identified a cohort of 246 patients at the University of Pennsylvania Epilepsy Center who met a strict definition of drug refractory epilepsy (failure of at least two antiepileptic drugs and seizure frequency greater than once per month). Median age at entry was 40, mean duration of epilepsy was 25 years, and mean duration of intractability was 20 years. We have now followed this cohort for over six years. Follow-up methods included chart review, and for those not seen within the past year, search of the National Social Security death index prior to additional attempts at direct contact using last known phone number. Results: Over the observation period, 13 patients were known to have died based upon record review. Of the 57 patients who had not had a clinic visit within the past year, an additional 11 were found to be deceased after search of the social security index. Thus, the case fatality for this intractable cohort was 9.8% over the six year period of follow-up; an average of 1.5% per year. The median age of death was 53. In all, 11/24 (46%) of patients who had died during follow-up were not known to be deceased by the treating physician or center before the social security index was queried. Conclusions: Among patients with refractory epilepsy, the case fatality is substantial (almost 10% in 6 years). Of note, 1/5 of the 23.4% of patients who had not returned for follow-up were deceased. Many of these deaths among patients followed at a comprehensive epilepsy center were unknown to the treating physician or center. A systematic follow-up is necessary if we truly wish to understand short and long term consequences of intractable epilepsy. Loss to follow-up may be more than just a desire for a different opinion.