Laurent M Willems1, Jacqueline M Kondziela2, Susanne Knake2, Juliane Schulz2, Birgit Neif3, Bernd Schade3, Stefan Gerlinger4, Bernd A Neubauer4, Bernhard Brunst5, Susanne Schubert-Bast6, Simone Fuchs7, Henrike Staab-Kupke7, Tobias Kniess8, Felix Rosenow1, Adam Strzelczyk9. 1. Epilepsy Center Frankfurt Rhine-Main, Department of Neurology, Goethe-University Frankfurt, Frankfurt am Main, Germany. 2. Epilepsy Center Hessen, Department of Neurology, Philipps-University Marburg, Marburg (Lahn), Germany. 3. Department of Neurology, Hephata-Klinik, Schwalmstadt-Treysa, Germany. 4. Department of Pediatric Neurology, Justus-Liebig-University Giessen, Giessen, Germany. 5. Epilepsy Counseling Diakonisches Werk Hochtaunus, Frankfurt am Main, Germany. 6. Epilepsy Center Frankfurt Rhine-Main, Department of Neurology, Goethe-University Frankfurt, Frankfurt am Main, Germany; Department of Neuropediatrics, Goethe University Frankfurt, Frankfurt am Main, Germany. 7. Epilepsy Counseling Unterfranken, Stiftung Juliusspital, Würzburg, Germany. 8. Department of Neurology, Campus Rhön Klinikum AG, Bad Neustadt a.d. Saale, Germany. 9. Epilepsy Center Frankfurt Rhine-Main, Department of Neurology, Goethe-University Frankfurt, Frankfurt am Main, Germany; Epilepsy Center Hessen, Department of Neurology, Philipps-University Marburg, Marburg (Lahn), Germany. Electronic address: strzelczyk@med.uni-frankfurt.de.
Abstract
BACKGROUND: The diagnosis of epilepsy is accompanied by relevant personal, interpersonal, and professional restrictions for patients and their caregivers. Specialized epilepsy counseling services (ECS) have been introduced to inform, advise, and support patients with disease-related problems. AIM AND SCOPE: The objective of this cross-sectional, multicenter study was to determine the demand, typical content, and outcomes of ECS in children, adolescents, and adults in two adjacent German regions of Hessen and Lower Franconia. All ECS sites in these regions participated in 2014 and 2015, offering a total population of 7.5 million inhabitants. RESULTS: A total number of 435 patients [323 adults (74.3%), 51.7% female, mean age: 40.3 ± 14.7 years and 112 children/adolescents (25.7%), 52.7% female, mean age: 9.4 ± 4.6 years] were enrolled at six ECS sites. The most common reasons for counseling were general information needs (n = 304; 69.9%), administrative help (n = 208; 47.8%), problems with education or work (n = 176; 40.5%), and recreational activities (n = 119; 27.3%). In addition, 6.2% reported epilepsy-related questions on family planning as a specific reason for desiring counseling. Recommendation by the treating physicians was the most frequent reason for receiving counseling through ECS (62.5%), and most patients preferred to receive a personal consultation (73.1%). Patient satisfaction as measured by the ZUF-8 client satisfaction score was high with a mean of 29.7 points (standard deviation: ±2.7 points, median: 29.9 points), and 83.9% of patients said they would recommend ECS. Disease-related job loss or change in school was avoided in 72% of 82 patients. Suggestions for improvement of ECS included an extension of service hours (58.6%) and a better availability of more sites located nearby (32.8%). CONCLUSION: Epilepsy counseling services are necessary, valued, and effective institutions for people with epilepsy complementing outpatient and inpatient care. To improve the care for people with epilepsy, access to and availability of ECS should be improved.
BACKGROUND: The diagnosis of epilepsy is accompanied by relevant personal, interpersonal, and professional restrictions for patients and their caregivers. Specialized epilepsy counseling services (ECS) have been introduced to inform, advise, and support patients with disease-related problems. AIM AND SCOPE: The objective of this cross-sectional, multicenter study was to determine the demand, typical content, and outcomes of ECS in children, adolescents, and adults in two adjacent German regions of Hessen and Lower Franconia. All ECS sites in these regions participated in 2014 and 2015, offering a total population of 7.5 million inhabitants. RESULTS: A total number of 435 patients [323 adults (74.3%), 51.7% female, mean age: 40.3 ± 14.7 years and 112 children/adolescents (25.7%), 52.7% female, mean age: 9.4 ± 4.6 years] were enrolled at six ECS sites. The most common reasons for counseling were general information needs (n = 304; 69.9%), administrative help (n = 208; 47.8%), problems with education or work (n = 176; 40.5%), and recreational activities (n = 119; 27.3%). In addition, 6.2% reported epilepsy-related questions on family planning as a specific reason for desiring counseling. Recommendation by the treating physicians was the most frequent reason for receiving counseling through ECS (62.5%), and most patients preferred to receive a personal consultation (73.1%). Patient satisfaction as measured by the ZUF-8 client satisfaction score was high with a mean of 29.7 points (standard deviation: ±2.7 points, median: 29.9 points), and 83.9% of patients said they would recommend ECS. Disease-related job loss or change in school was avoided in 72% of 82 patients. Suggestions for improvement of ECS included an extension of service hours (58.6%) and a better availability of more sites located nearby (32.8%). CONCLUSION:Epilepsy counseling services are necessary, valued, and effective institutions for people with epilepsy complementing outpatient and inpatient care. To improve the care for people with epilepsy, access to and availability of ECS should be improved.
Authors: Jacqueline M Kondziela; Juliane Schulz; Bernhard Brunst; Simone Fuchs; Stefan Gerlinger; Birgit Neif; Henrike Staab-Kupke; Silke Vasileiadis; Peter Brodisch; Susanne Knake; Tobias Kniess; Bernd Schade; Bernd A Neubauer; Felix Rosenow; Susanne Schubert-Bast; Adam Strzelczyk; Laurent M Willems Journal: Nervenarzt Date: 2019-08 Impact factor: 1.214
Authors: Nils Mühlenfeld; Philipp Störmann; Ingo Marzi; Felix Rosenow; Adam Strzelczyk; René D Verboket; Laurent M Willems Journal: Chin J Traumatol Date: 2021-10-15