Margarete Pfäfflin

Incidence of Epilepsies and Epileptic Syndromes in Children and Adolescents: A Population-Based Prospective Study in Germany

Summary:  Purpose: To estimate the incidence rate of epilepsies and epileptic syndromes in German children and adolescents aged 1 month to <15 years, and to provide data on their classification.

Psychometric Properties of the German Translation of the QOLIE-31

The purpose of this work was to assess the psychometric properties of the German Translation of the Quality of Life in Epilepsy Inventory, QOLIE-31. Internal consistency, construct and criterion validity, and responsiveness were tested in 509 patients with epilepsy who were administered the questionnaires at application or at admittance to the epilepsy center Bethel. Construct validity was tested in patients with different seizure frequencies and different degrees of tolerability of antiepileptic drug (AED) therapy (adverse effects). The scales Epilepsy-Related Fears und Restrictions in Daily Life due to Epilepsy were used as criterion measures. Test-retest reliability (long-term stability) and responsiveness of the questionnaire were analyzed in subgroups of patients who responded to the questionnaires a second time (n = 256). Cronbachs alpha of the QOLIE-31 was 0.94 and varied between 0.76 and 0.90 for the seven subscales. The correlations of the QOLIE with Epilepsy-Related Fears and Restrictions in Daily Life revealed high correlations between Epilepsy-Related Fears and the QOLIE subscale Seizure Worry (r = 0.81, P < 0.01) and the total score (r = 0.62, P < 0.01) and between Restrictions in Daily Life and the QOLIE subscale Social Functioning (r = 0.71) and the total score (r = 0.70, P < 0.01). Seizure frequency had a significant effect especially on the QOLIE subscales Social Functioning, Seizure Worry, and Overall QOL, whereas tolerability of AED therapy affected especially the subscales Medication Effects, Overall QOL, and Energy-Fatigue. The test-retest reliability (intraclass correlation coefficient) was 0.79 for the overall score and varied between 0.59 and 0.78 for the seven subscales. The German Translation of QOLIE-31 is a reliable and valid questionnaire with which to assess QOL in patients with epilepsy and is conceptually similar to the English version. It is a sensitive questionnaire with respect to seizure frequency and tolerability of antiepileptic drug treatment.

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

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.

Trends in epilepsy surgery: stable surgical numbers despite increasing presurgical volumes

Introduction Despite the success of epilepsy surgery, recent reports suggest a decline in surgical numbers. We tested these trends in our cohort to elucidate potential reasons. Patients and methods Presurgical, surgical and postsurgical data of all patients undergoing presurgical evaluation in between 1990 and 2013 were retrospectively analysed. Patients were grouped according to the underlying pathology. Results A total of 3060 patients were presurgically studied, and resective surgery was performed in 66.8% (n=2044) of them: medial temporal sclerosis (MTS): n=675, 33.0%; benign tumour (BT): n=408, 20.0%; and focal cortical dysplasia (FCD): n=284, 13.9%. Of these, 1929 patients (94.4%) had a follow-up of 2 years, and 50.8% were completely seizure free (Engel IA). Seizure freedom rate slightly improved over time. Presurgical evaluations continuously increased, whereas surgical interventions did not. Numbers for MTS, BT and temporal lobe resections decreased since 2009. The number of non-lesional patients and the need for intracranial recordings increased. More evaluated patients did not undergo surgery (more than 50% in 2010–2013) because patients were not suitable (mainly due to missing hypothesis: 4.5% in 1990–1993 up to 21.1% in 2010–2013, total 13.4%) or declined from surgery (maximum 21.0% in 2010–2013, total 10.9%). One potential reason may be that increasingly detailed information on chances and risks were given over time. Conclusions The increasing volume of the presurgical programme largely compensates for decreasing numbers of surgically remediable syndromes and a growing rate of informed choice against epilepsy surgery. Although comprehensive diagnostic evaluation is offered to a larger group of epilepsy patients, surgical numbers remain stable.

Psychoeducational Programs for Patients with Epilepsy

Epilepsy is a common neurological disease, which affects people of all ages. Patients often have deficits regarding their knowledge of epilepsy. Many of them have recurrent seizures, psychosocial, and emotional problems and report restrictions in daily living as a result of their epilepsy. Meanwhile, a variety of psychoeducational programs have been developed with the intention to improve knowledge, coping with epilepsy, quality of life, compliance, and health status.This review article discusses the content and designs of formal patient educational programs for persons with epilepsy and reviews their role in improving patient outcomes. A systematic research of medical and psychological literature reveals that a sizeable amount of literature has been produced within the last decade that focuses on (psycho-) educational programs for adults, adolescents, and children with epilepsy as well as their families. These educational programs vary considerably in regard to content, didactic approach, and objectives. It is sometimes difficult to differentiate educational programs from psychological treatments or other interventions (e.g. by specialist epilepsy nurses). Information given about the theoretical frameworks guiding interventions, teaching strategies, and methodological approach of the programs is often sparse or lacking.The crucial point is that only very few educational programs have been evaluated in a randomized controlled trial. Furthermore, the methods of evaluation (e.g. questionnaires, inclusion and exclusion criteria, randomization, follow-up period) vary substantially and sometimes the number of subjects included in the study is too small for sufficient statistical evaluation.Overall, from the small number of evaluated programs it is evident that educational programs can improve epilepsy-related knowledge, improve the management of seizures, and reduce misinformation and misconceptions about epilepsy. They can support adults, adolescents, and children with epilepsy and their families and enable them to cope with the disease; they can sometimes also reduce seizure frequency and improve compliance with antiepileptic drugs. The effects on emotional disorders (e.g. depression) and quality of life are less obvious.Evaluated or standardized psychoeducational programs are available for specific target groups of patients with epilepsy. The review indicates that it is reasonable to perform or to adapt these educational programs for the benefit of the patients. Future research should focus on controlled evaluation studies of educational programs.

PESOS-Fragebogen für Menschen mit Epilepsie—

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.

Predictors of and attitudes toward counseling about SUDEP and other epilepsy risk factors among Austrian, German, and Swiss neurologists and neuropediatricians.

To examine the attitudes toward counseling about sudden unexpected death in epilepsy (SUDEP) and other epilepsy risk factors among Austrian, German, and Swiss neurologists and neuropediatricians, and to determine factors associated with not discussing SUDEP.

Frauen mit Epilepsie: Befürchtungen, Wissen, Beratungsbedarf

BACKGROUND Women with epilepsy are particularly affected by their condition and need therefore specific counseling and comprehensive information about issues related to contraception, pregnancy, hormone effects on seizure control, bone mineral density, etc. The primary aim of this study was to investigate the knowledge of women with epilepsy about their condition and their need for information and counseling. METHODS A total of 365 women with epilepsy aged from 16 to 75 years of age took part in this prospective, cross-sectional study. All were treated by neurologists in private practice or outpatient clinics. The physicians distributed anonymous questionnaires to the women, who mailed them unsigned to the Society for Epilepsy Research. Sociodemographic and epilepsy-specific data of the women, their experiences and fears regarding partnership, family planning, pregnancy, care of children, and their self-rated and actual knowledge were assessed. RESULTS Most women (80.9%) lived together with partners, and about half of the women (44.9%) had children. The majority of those with children were greatly worried during pregnancy about risks to their newborn child. They were afraid of potential handicaps (57.9%) and potential epileptic seizures of the child (52.5%) because of their own epilepsy or antiepileptic drugs. Another 39.0% had had great reservations about becoming pregnant. About every fifth woman (18.2%) stopped or reduced antiepileptic medication during pregnancy without consulting her doctor. Women who consciously abstained from having own children (n=87, 23.8%) often reported epilepsy-related reasons (e.g. risk of malformation caused by antiepileptic drugs, 40.8%). Epilepsy also affects the mother-child relationship. For example 40.8% of the women were worried that the child could be harmed during a mothers seizure and 36% reported that their seizures would frighten their children. About 56-66% of the epileptic women stated that they were well to very well informed about topics on contraception, pregnancy, prophylaxis of malformations, and heredity of epilepsies. The knowledge questionnaires revealed however considerable knowledge deficits. These were especially widespread concerning older women and epilepsy, e.g. antiepileptic drugs and osteoporosis, and more pronounced in older women (>50 years) and those with low school education. In all, self-rated and actual knowledge correlated only slightly (r=0.25). Of the women, 60% preferred personal counseling by their physicians. However, especially younger women wanted further information, primarily easy-to-understand brochures (32%) and educational courses (31%). CONCLUSION Our results are in accordance with other studies from Great Britain and the U.S. They confirm that women with epilepsy have considerable deficits in epilepsy-specific knowledge and a great need of counselling and information.

The Impact on Family Scale: Psychometric analysis of long and short forms in parents of children with epilepsy

Epilepsy in a child or adolescent can have severe psychosocial impact on the whole family and burdens them, especially the parents. As the familial background is essential for the childs coping and the progression of the epilepsy, parental burden should be considered within a comprehensive treatment approach. This study validated the applicability of the Impact on Family Scale (IOFS), a well-established instrument that assesses the strains of families with chronically ill or disabled children, in parents of children with epilepsy. In a sample of 219 parents, the psychometric properties of the original IOFS version (33 items) and two short forms (15 and 11 items, respectively) were examined. Both short forms revealed good reliability (Cronbachs alpha, test-retest reliability), and construct validity was verified by correlations with epilepsy- and burden-related variables. However, exploratory and confirmatory factor analyses indicated superior characteristics of the short form with 11 items (IOFS-11). In conclusion, the IOFS-11 as well as the IOFS-15 proved to be practicable, reliable, and valid tools to assess the impact of childhood epilepsy on family life in research and clinical practice.

[Fears, knowledge, and need of counseling for women with epilepsy. Results of an outpatient study].

BACKGROUND Women with epilepsy are particularly affected by their condition and need therefore specific counseling and comprehensive information about issues related to contraception, pregnancy, hormone effects on seizure control, bone mineral density, etc. The primary aim of this study was to investigate the knowledge of women with epilepsy about their condition and their need for information and counseling. METHODS A total of 365 women with epilepsy aged from 16 to 75 years of age took part in this prospective, cross-sectional study. All were treated by neurologists in private practice or outpatient clinics. The physicians distributed anonymous questionnaires to the women, who mailed them unsigned to the Society for Epilepsy Research. Sociodemographic and epilepsy-specific data of the women, their experiences and fears regarding partnership, family planning, pregnancy, care of children, and their self-rated and actual knowledge were assessed. RESULTS Most women (80.9%) lived together with partners, and about half of the women (44.9%) had children. The majority of those with children were greatly worried during pregnancy about risks to their newborn child. They were afraid of potential handicaps (57.9%) and potential epileptic seizures of the child (52.5%) because of their own epilepsy or antiepileptic drugs. Another 39.0% had had great reservations about becoming pregnant. About every fifth woman (18.2%) stopped or reduced antiepileptic medication during pregnancy without consulting her doctor. Women who consciously abstained from having own children (n=87, 23.8%) often reported epilepsy-related reasons (e.g. risk of malformation caused by antiepileptic drugs, 40.8%). Epilepsy also affects the mother-child relationship. For example 40.8% of the women were worried that the child could be harmed during a mothers seizure and 36% reported that their seizures would frighten their children. About 56-66% of the epileptic women stated that they were well to very well informed about topics on contraception, pregnancy, prophylaxis of malformations, and heredity of epilepsies. The knowledge questionnaires revealed however considerable knowledge deficits. These were especially widespread concerning older women and epilepsy, e.g. antiepileptic drugs and osteoporosis, and more pronounced in older women (>50 years) and those with low school education. In all, self-rated and actual knowledge correlated only slightly (r=0.25). Of the women, 60% preferred personal counseling by their physicians. However, especially younger women wanted further information, primarily easy-to-understand brochures (32%) and educational courses (31%). CONCLUSION Our results are in accordance with other studies from Great Britain and the U.S. They confirm that women with epilepsy have considerable deficits in epilepsy-specific knowledge and a great need of counselling and information.