Rupprecht Thorbecke

Commission on Outcome Measurement in Epilepsy, 1994–1997: Final Report

University Department of Neurosciences, The Walfon Centre, Liverpool, U. K.; *Dalhousie University, Izaak Walton Killam Hospital jor Children, Halqm, Nova Scotia, Canada; ?Yale University School of Medicine, New Haven, Connecticut, U.S.A.;

MOSES: An Educational Program for Patients with Epilepsy and Their Relatives

Department of Epileptology, University of Bonn, Bonn, Germany;

Long-term outcome and determinants of quality of life after temporal lobe epilepsy surgery in adults.

MRC Biostatics Unit, Institute of Public Health, University Forvie Site, Cambridge, U. K.; I‘Department of Neurophysiology, Hospital Geral de Santo Antonio, Porto, Portugal; ¶Department of Physiology, Leyden University, Leiden, The Netherlands; **Centre Regionale per la Chirurgia dell’Epilessia, Ospedale Niguarda, Milan, Italy; f f Clinical Pharmacology Unit, University of Pavia, Pavia, Italy; and

Predictors of quality of life after resective extratemporal epilepsy surgery in adults in long-term follow-up

Epilepsy Centre Bethel, Bielefeld, Germany

PESOS-Fragebogen für Menschen mit Epilepsie—

Summary: The knowledge of patients with epilepsy about their own condition is poor, and thus the need for educational programs for people with epilepsy has long been recognized. However, no such programs have been established in their routine care. The Modular Service Package Epilepsy (MOSES) now tries to fill this gap for patients in German‐speaking countries. The program was developed by a multidisciplinary group (neurologists, nonmedical professional helpers, and representatives of national epilepsy associations) for people with epilepsy older than 16 years, independent of the kind and severity of their epilepsy. MOSES is designed for group education and can be used in inpatient and outpatient settings in epilepsy centers, in clinics, and by neurologists in private practice. The program aims to help patients achieve a better understanding of their disease, to gain more self‐confidence, and to take over responsibility, thus supporting patients to become experts in managing their own illness. Being modular in structure, MOSES includes nine units: living with epilepsy, epidemiology, basic knowledge, diagnostics, therapy, self‐control, prognosis, psychosocial aspects, and network epilepsy. MOSES consists of a workout manual for patients and a trainer manual. For potential trainers, special “train‐the‐trainer seminars” are offered and considered mandatory. About 400 patients have participated in a MOSES training program in Germany, Switzerland, and Austria. The efficacy of the program is currently been evaluated.

Should patients with psychogenic nonepileptic seizures be allowed to drive? Recommendations of German experts

AIM OF THE STUDY To find determinants of quality of life (QOL) in long-term follow-up after temporal lobe epilepsy (TLE) surgery in adults. METHODS The QOLIE-31 questionnaire was sent to 400 of 524 patients who were operated on for refractory TLE between 1991 and 2003 in the Bethel Epilepsy Centre fulfilling the inclusion criteria of this study. Mainly patients with severe cognitive deficits and patients with progressive brain disorders were excluded. There were 222/400 patients who replied to the QOLIE-31 questionnaire and 147/222 of these patients replied to an additional questionnaire. RESULTS Univariate analyses showed that seizure freedom, presence of auras, intake of antiepileptic drugs (AEDs), severity of AED side effects, and driving a car were significantly correlated with all subscales of QOLIE-31. Furthermore, employment status, psychiatric problems, tumors and hippocampus sclerosis pathology, the presence of a partner, age at reply, age at surgery and medical co-morbidities were significantly correlated with some subscales of the QOLIE-31. Multivariate analyses (stepwise regression analyses) revealed that especially the time since the last seizure and the severity of AED side effects had a strong impact on QOL. However, aura at last follow-up, psychiatric treatment and employment were seen in the multivariate analyses as significant predictors of some QOL subscales as well. Most subscales of QOL showed a steep, non-linear increase within the first years of seizure freedom and remained relatively stable except for cognitive function which showed continuous improvement parallel to seizure freedom. For patients who were seizure free since surgery, side effects of AED and/or psychiatric treatment were the strongest determinants of QOL. CONCLUSION Duration of seizure freedom and AED side effects have the strongest impact on QOL in the long-term follow-up. Therefore it is important not only to register intake of AEDs but also to assess side effects of AEDs. Persistence of auras also had an impact on different facets of QOL, but was significantly correlated with intake of AEDs. Apart from factors directly related to epilepsy QOL was dependent of psychosocial factors as employment status, psychiatric complications, and driving a car underlining the necessity of postoperative rehabilitation in this group.

Social aspects of epilepsy and rehabilitation

To evaluate the effects of a postsurgical rehabilitation program on employment status 2 years after temporal lobe epilepsy surgery in relation to other predictors.

Beratung und sozialrechtliche Hilfen für (noch nicht) fahrgeeignete Epilepsiepatienten

PURPOSE To present long-term outcome and predictors of the health related quality of life (HRQOL) in a large group of patients operated for refractory extratemporal epilepsy. METHODS A German QOLIE-31 questionnaire and additional questions has been mailed for all adult patients operated for extratemporal epilepsy in the Bethel Epilepsy Centre, between 1992 and 2003, 87 patients were eligible for this study. RESULTS Seizure freedom, intake of antiepileptic drugs (AEDs), presence of AEDs side effect medical comorbidities and driving a car were significantly correlated to HRQOL in all subscales of QOLIE-31. Gender, age at epilepsy onset, the presence of a partner, psychiatric disease, the presence of auras and tumour pathology have a correlation to QOL in some subscales. Stepwise regression for all patients revealed that seizure freedom and medical comorbidities were highly predictive for most of the subscales of QOLIE-31. Intake of anti-epileptic drugs and AED side effects had a modest effect on QOL. The need for psychiatric treatment predicted poor cognitive function scores. Epilepsy onset at an older age predicted a minimal increase in the overall health scores. An aura at the last follow-up predicted poor medication scores. Regarding the importance of the predictors, seizure freedom and medical comorbidities were the most important predictors of QOL after surgery. AED intake and side effects had an intermediate effect on QOL; however, the gender of the patient and age at epilepsy onset had a minimal effect on QOL. CONCLUSIONS HRQOL after extratemporal epilepsy surgery has multiple determinants. Medical comorbidities should be considered a negative risk factor for QOL during preoperative and postoperative evaluation process.

Krankheitsverarbeitung bei Epilepsien im Kindesalter

The PESOS questionnaire was developed at the Epilepsy Center Bethel in order to assess individual problems of patients with epilepsy in social and occupational surroundings (diagnostic function) and to investigate effects of treatment and counselling on quality of life (evaluative function). Clinical and demographic data, objective and subjective indicators of quality of life and modules (subscales) for specific patient groups (e. g. for students, employees) are included. The psychometric properties of the PESOS scales ‘Restrictions in daily life due to epilepsy’ ‘Epilepsy-related fear’, ‘Stigma’, and ‘Emotional adaptation’ were investigated in a multi-center study. The results indicate that the investigated subscales of the PESOS are reliable, valid and sensitive regarding effects of seizure frequency and tolerability of antiepileptic drugs.ZusammenfassungDer PESOS-Fragebogen wurde im Epilepsiezentrum Bethel entwickelt, um die individuellen Auswirkungen von Epilepsien auf soziale und berufliche Bereiche zu erfassen (diagnostische Funktion) und Effekte der Behandlung und Beratung auf die Lebensqualität der Betroffenen zu untersuchen (evaluierende Funktion). Erfasste Bereiche: medizinische und demographische Daten, objektive und subjektive Indikatoren der Lebensqualität sowie Module für spezielle Patientengruppen (z. B. Schüler/Studenten, Beschäftigte/Arbeitslose). Die psychometrischen Eigenschaften der PESOS-Skalen ‚Beeinträchtigungen im täglichen Leben durch die Epilepsie‘, ‚Epilepsiespezifische Angst‘, ‚Stigma‘ und ‚Emotionale Adaption an Epilepsie‘) wurden in einer multizentrischen Studie überprüft. Die Ergebnisse zeigen, dass die untersuchten Skalen des PESOS reliabel, valide und sensitiv hinsichtlich der Anfallsfrequenz sowie der Verträglichkeit der Antiepileptika-Therapie sind.