So far little is known about the long-term outcome of difficult-to-treat epilepsy syndromes of childhood. The aim of this study was to evaluate precise long-term data concerning the course of such epilepsies after 20 years. By means of a questionnaire we assessed the current situation of patients who had been treated as in-patients at the Department of Children and Adolescents at our Centre due to their difficult-to-treat epilepsy. Of 287 patients who met the inclusion criteria (diagnosis of difficult-to-treat epilepsy according to the final hospital record and hospitalisation for a therapy-resistant epilepsy), 176 were traced successfully and 81 completed and returned the questionnaire. A significant improvement of seizure frequency was reported by 49.7% and complete remission (with or without AEDs) by 25.9% of the patients. Social integration and work was attained by 21%. Cognitive impairment and treatment with more than 3 antiepileptic drugs proved to be significant negative outcome predictors. Among the patient population addressed in this study a high percentage had neurological impairments and/or cognitive deficiencies. Still, with 25.9% an unexpectedly high proportion of patients reached complete clinical remission after 20 years. Our data indicate that the natural course of difficult-to-treat epilepsies of childhood may be better than previously suggested.
© Georg Thieme Verlag KG Stuttgart · New York.