The perceived rehabilitation needs of a hospital-based outpatient sample of people with epilepsy

A postal survey was carried out to identify the perceived epilepsy rehabilitation needs of a hospital-based outpatient population. A response rate of 70% resulted in 245 patients being surveyed. Data showed that 65% of the total sample wanted more rehabilitation assistance and that 27% required substantial contact with the rehabilitation services. The most common request was for more medical information both via written material and telephone contact with a specially trained epilepsy nurse. Approximately one in six patients would like to attend a course on how to live with epilepsy. Access to a psychologist was most often requested during the first year following diagnosis and demand for courses on how to live with epilepsy was highest in the second to fourth year following diagnosis. Requests for social worker assistance were associated with employment issues. Frequency of seizures, duration of epilepsy and age were significant variables in relation to demands for rehabilitation resources. The general conclusions are that (1) the minimum standards of a rehabilitation service should include greater access to medical information via a variety of authoritative sources; and (2) that team-based resources are wanted by a substantial proportion of the population in relation to specific and definable problems, which would involve intensive input from psychologists and social workers.