Abstracts

RATIONALE: Although most published studies of epilepsy surgery report average durations of refractory epilepsy of 15-20 years prior to presurgical evaluation, little is known about the medical care of epilepsy patients prior to treatment at subsepcialty epilepsy centers.
METHODS: We present preliminary data from a prospective, nine-center study (target enrollment is 50 patients/center) of patient perceptions of their care prior to referral to a tertiary epilepsy center. We used the Epilepsy Specialty Clinic Referral Survey developed by the authors to assess multiple aspects of previous epilepsy care. All patients signed an informed consent document approved by our IRB. Data was stored and analysed in a SPSS database.
RESULTS: These are the preliminary results from the initial 37 patients enrolled in the study. Twenty-one were women and 16 were men, ranging in age form 19 years to 70 years. Twenty-nine (78%) patients were currently cared for by a neurologist, and all others had seen a neurologist in the past. Only 10 (27%) patients were referred for subspecialty epilepsy care by their neurologist, whereas 13 (35%) were referred by their primary care physician and 14 (38%) were self-referred or sent by a friend or family member. A specific event, such as seizure at work, MVA, or injury, initiated the referral in over over 80% of patients. Forty-one percent of the patients reported that they wished they had been referred earlier to an epilepsy specialist.
CONCLUSIONS: Although most patients with refractory seizures are cared for by a neurologist prior to evaluation at subspecialty epilepsy centers, nearly three-fourths of patients are referred by non-neurologists. The referrals for most patients were initiated by a specific event such as an accident or seizure at work, and 41% wished they had been referred to an epilepsy center earlier.
Support: NIH Grant NS01794-01