[Acceptance, demand, reasons for consultation and outcome of counseling on epilepsy in Hesse and Lower Franconia]

Background and aim: The diagnosis of epilepsy is often accompanied by relevant restrictions for patients, which may result in disease-specific daily problems that need targeted and professional counseling. Specialized epilepsy counseling services (ECS) were introduced in some German states since 1996 to provide an additional and independent service for epilepsy-related problems. The objective of this prospective, multicenter cohort study at six ECS was to determine and analyze the acceptance, demand and frequent reasons for consultation in Hesse and Lower Franconia.

Results: A total of 435 clients were enrolled during the 12-month observation period (June 2014-May 2015) of which 74.3% were adults (n = 323, mean age 40.3 ± 14.7 years, range 18-76 years, 51.7% female) and 25.7% children and adolescents (n = 112, mean age 9.4 ± 4.8 years, range 1-17 years, 52.7% female). The mean number of outpatient consultations per year was 2.5 (median 2.0, SD ± 2.8, range 1-20), whereby a general counseling on dealing with epilepsy (adults 55.7%, children and adolescents 51.8%), clarification and information about the disease (43.7% and 41.1%, respectively) and assistance in applying for support (39.0% and 46.4%, respectively) were the most frequent issues. The distance from the place of residence to the ECS was significantly shorter in Lower Franconia compared to Hesse (p < 0.002). Client satisfaction was high with a mean patient satisfaction questionnaire (ZUF-8) score of 29.0 (maximum score 32). Overall 96.4% of the clients rated the quality of counseling as good or very good and 96.6% would consider consulting the ECS again in case of new problems. In cases of threatened workplace, training position or situation at school, counseling helped to avoid negative consequences in 72.0% of cases.

Conclusion: The ECS are frequently used, appreciated and effective institutions for adults and children with epilepsy as well as for their caregivers. The ECS complements the existing comprehensive specialized outpatient and inpatient care for epilepsy in Germany; however, in view of their limited numbers and inhomogeneous allocation, the number and the availability of ECS should be expanded on the national level.