The goal of the social management of epilepsy is to decrease the physical, psychological, and social consequences for persons with epilepsy (PWEs). The objective of this observational study was to determine the needs and issues of PWEs in the utilization of epilepsy counseling services between 2008 and 2012 in the German state of Hessen. Sociodemographic data, employment status, counseling issues, and characteristics were collected at first and follow-up visits. An average of 492 (272 males, 55.3%) PWEs presented at counseling services per year. These were mainly children or adolescents below the age of 20years (22.4%) and PWEs in working age between 20 and 65years (73.6%). The majority of PWEs seeking counseling were employed (44.4%, annual average: 219 PWEs, SD: 39). However, a substantial part (114/219, 52.1%) of these employed PWEs reported problems or difficulties at their workplace associated with the diagnosis of epilepsy. We could identify four major issues addressed by the PWEs as 1) diagnosis of epilepsy, 2) employment, 3) family-related matters, and 4) social or medical aids linked with public authorities. This study demonstrated the continuous demand for epilepsy counseling with at least one out of twenty (5.8%) PWEs in need of counseling per year. Further studies are warranted to answer questions on outcome and long-term course. Epilepsy counseling should be available to all PWEs on a national level and may be helpful in preventing long-term unemployment and early retirement while maintaining quality of care for PWEs.
Keywords: Burden; Counseling; Epilepsy; Retirement; Social work; Work loss.
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