Kondziela Jacqueline M, Schulz Juliane, Brunst Bernhard, Fuchs Simone, Gerlinger Stefan, Neif Birgit, Staab-Kupke Henrike, Vasileiadis Silke, Brodisch Peter, Knake Susanne, Kniess Tobias, Schade Bernd, Neubauer Bernd A, Rosenow Felix, Schubert-Bast Susanne, Strzelczyk Adam, Willems Laurent M
Epilepsiezentrum Hessen und Klinik für Neurologie, Philipps-Universität Marburg, Marburg, Deutschland.
Epilepsieberatung Diakonisches Werk Hochtaunus, Frankfurt am Main, Deutschland.
Nervenarzt. 2019 Aug;90(8):832-839. doi: 10.1007/s00115-019-0676-8.
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.
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.
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.
癫痫的诊断往往会给患者带来相关限制，这可能导致特定于该疾病的日常问题，而这些问题需要有针对性的专业咨询。自1996年起，德国一些州引入了专门的癫痫咨询服务（ECS），以便为与癫痫相关的问题提供一项额外且独立的服务。这项在六个ECS机构开展的前瞻性多中心队列研究的目的是确定并分析黑森州和下弗兰肯行政区对该服务的接受度、需求以及常见咨询原因。
在12个月的观察期（2014年6月至2015年5月）内，共招募了435名客户，其中74.3%为成年人（n = 323，平均年龄40.3 ± 14.7岁，年龄范围18 - 76岁，女性占51.7%），25.7%为儿童和青少年（n = 112，平均年龄9.4 ± 4.8岁，年龄范围1 - 17岁，女性占52.7%）。每年门诊咨询的平均次数为2.5次（中位数为2.0，标准差±2.8，范围为1 - 20次），其中关于应对癫痫的一般咨询（成年人占55.7%，儿童和青少年占51.8%）、对疾病的澄清和信息获取（分别为43.7%和41.1%）以及申请支持方面的协助（分别为39.0%和46.4%）是最常见的问题。与黑森州相比，下弗兰肯行政区客户居住地到ECS机构的距离明显更短（p < 0.002）。客户满意度较高，患者满意度问卷（ZUF - 8）的平均得分为29.0分（满分32分）。总体而言，96.4%的客户将咨询质量评为良好或非常好，96.6%的客户表示如果出现新问题会考虑再次咨询ECS。在面临工作场所、培训岗位或学校相关威胁的情况下，咨询在72.0%的案例中帮助避免了负面后果。
ECS是癫痫患者及其照顾者常用、受赞赏且有效的机构。ECS补充了德国现有的针对癫痫的全面专科门诊和住院护理；然而，鉴于其数量有限且分布不均，应在国家层面扩大ECS的数量和可及性。
