A comprehensive, interdisciplinary approach to the care of the institutionalized person with epilepsy

This report summarizes the experience of a comprehensive, interdisciplinary pilot program for improved care of institutionalized persons with epilepsy. From a hospital population of nearly 3,000 persons with diseases of the nervous system, virtually all having varying degrees of retardation, 892 persons were identified as epileptic and classified by seizure frequency: 13% uncontrolled, 24% partially controlled, and 63% controlled. These three categories were similar in respect to levels of retardation and functional disability. The project personnel consisted of a full-time nurse specialist in epilepsy, a part-time health resource analyst, and neurological consultants. Effects on health status were identified by comparing demographic and health data collected during the project. The typical patient was an adult epileptic, functioning at a severely to profoundly retarded level and institutionalized for over 15 years. A significant reduction in anticonvulsant toxicity was observed. A 48% decrease in episodes of status epilepticus and a 73% decrease in the number of seizure-related deaths were demonstrated. During the second year, 23% of the uncontrolled group, representing all retardation levels, became seizure free. In addition to improved care, an effective model for dealing with institutionalized epileptics is proposed.