Search

Objective The aim of the article was to examine the psychometric properties of the Epilepsy-related Fears in Parents Questionnaire (EFPQ). Method Internal consistency, factor structure, and construct validity were analyzed based on data from 291 parents participating in the baseline assessment of a quasi-experimental study on the efficacy of the FAMOSES ( modulares Schulungsprogramm Epilepsie für Familien ) parents' program. The control group of this study was used to calculate the test–retest reliability, while the responsiveness of the questionnaire was evaluated by comparing matched groups of FAMOSES participants and control parents. Results An exploratory factor analysis revealed two factors of epilepsy-related fears, “Fears about short-term consequences of the child's epilepsy” (8 items) and “Fears about the future development of the child and the child's epilepsy” (9 items). Both showed good reliability ( Cronbach's α = .89 and .91, resp.; test–retest reliability: ICC = .77 and .80, resp.), and construct validity was confirmed by correlations with epilepsy-related variables and psychosocial outcomes, e.g., with the Impact on Family Scale ( r = .48 and .61, resp.). The FAMOSES parents' program significantly reduced epilepsy-related fears ( p < .05 for both subscales). Conclusion The EFPQ proved to be a reliable, valid, and responsive instrument for the assessment of parental fears about their child's epilepsy and can be recommended for use in future studies. [ABSTRACT FROM AUTHOR]

Objective The objective of the present study was to collect systematic data on the care of adult patients with tuberous sclerosis complex (TSC) in German epilepsy centers, to describe the characteristics of patients in this age group, and to clarify whether and how the recommended interdisciplinary care is implemented. Methods This retrospective survey involved 12 major epilepsy centers in Germany. Aggregated data were collected based on an electronic questionnaire that addressed the sociodemographic data, characteristics of the epilepsy syndromes, and general healthcare setting of adult patients with TSC. Results The survey included 262 patients (mean age: 36.2 ± 9.0 years) with TSC, most of whom were reported to live in either a home for persons with a disability (37.0%), a residential care home (6.9%), or with their parents (31.1%). A further 13.0% were self-sustaining, and 8.8% were living with a partner. Most patients presented with focal (49.6%) or multifocal (33.2%) epilepsy, with complex partial, dialeptic, and automotor seizures in 66% of patients and generalized tonic–clonic seizures in 63%. Drug-refractory epilepsy was seen in 78.2% of patients, and 17.6% were seizure-free at the time of the survey. Of the 262 patients, presurgical diagnostics were performed in 27% and epilepsy surgery in 9%, which rendered 50% of these patients seizure-free. Renal screening had been performed in 56.1% within the last three years and was scheduled to be performed in 58.0%. Cases of renal angiomyolipoma were present in 46.9% of the patients. Dermatologic and pulmonary screenings were known to be planned for only few patients. Conclusion Despite TSC being a multisystem disorder causing considerable impairment, every fifth adult patient is self-sustaining or living with a partner. In clinical practice, uncontrolled epilepsy and renal angiomyolipoma are of major importance in adult patients with TSC. Most patients suffer from focal or multifocal epilepsy, but epilepsy surgery is performed in less than 10% of these patients. Interdisciplinary TSC centers may help to optimize the management of patients with TSC regardless of age and ensure early and adequate treatment that also considers the advances in new therapeutic options. [ABSTRACT FROM AUTHOR]

Objective The objective of this study was to evaluate the efficacy of the educational program FAMOSES (modular service package epilepsy for families) for parents of children with epilepsy. Method Parents of children with epilepsy from Germany and Austria were included in a controlled prospective multicenter study using a pre–post design. Participants of the FAMOSES program (FAMOSES group, n = 148) completed a standardized questionnaire immediately before the program and six months later. The matched control group of parents not participating in the program ( n = 74, matching ratio 2:1) also answered the questionnaire twice, at an interval of six months. The questionnaire comprised epilepsy-specific outcome measures (e.g., knowledge, coping, fears) and disease-related variables (e.g., seizure frequency). The generalized estimation equation approach was used for statistical analysis. In addition, parents' satisfaction with the FAMOSES program was assessed six months after participation. Results Parents of the FAMOSES group significantly improved in epilepsy-specific knowledge (group × time interaction: p < .001), coping ( p < .01), epilepsy-related fears ( p < .05), and in speaking about epilepsy with their child ( p < .05) compared with the control group. No effects were found on disease-related variables. Nearly all of the participants rated the FAMOSES parents' program as “very good” (71%) or “good” (27%). Conclusion The efficacy of the FAMOSES parents' program was confirmed. The results indicate that imparting knowledge and the interactive approach help parents in coping with their child's epilepsy and reduce epilepsy-related fears. [ABSTRACT FROM AUTHOR]

Objective: We investigated the efficacy of epilepsy nurses on satisfaction with counseling about epilepsy in a randomized, controlled, prospective trial. Methods: Patients with epilepsy treated by neurologists in outpatient clinics were consecutively enrolled and randomly allocated to either the epilepsy nurse (EN) group (n = 92) or the control group (n = 95). Patients in the EN group were advised according to their needs by epilepsy nurses. The control group received routine care without additional counseling. The EN group completed the questionnaires before the first consultation (T1) and 6 months later (T2); the control group completed the questionnaires twice with an interval of 6 months. Primary outcome measure was satisfaction of patients with information and support. Secondary outcome measures were satisfaction with patient-doctor relationship, organization of treatment, epilepsy knowledge, coping, and restrictions in daily life. Anxiety and depression (Hospital Anxiety and Depression Scale) and global Quality of Life (item from QOLIE-31) were also assessed. Statistical analysis included generalized estimating equation (GEE) and nonparametric tests. Results: Satisfaction with information and support improved significantly in the EN group compared to the control group (GEE, interaction group 3 time, p = 0.001). In addition, Epilepsy Knowledge (p = 0.014) and Coping (subscale Information Seeking) (p = 0.023) improved. Increase in satisfaction with counseling was dependent on patients' needs for information and on the amount of received information (Jonckheere-Terpstra test, p < 0.001). No differences between the groups were observed on other epilepsy-specific scales. Significance: A reliable questionnaire for satisfaction with epilepsy care has been developed. Epilepsy nurses improve the satisfaction of patients with counseling and information about epilepsy and concomitant problems. [ABSTRACT FROM AUTHOR]

Purpose: To evaluate the efficacy of the e-learning course “Genetics of Epilepsies” and to assess the experiences of the participants and e-moderators with this new approach. Methods: Prospective, controlled study with waiting group (control group, n = 18) and e-learning group (n = 20). The control group got the same reference literature list as the e-learning group. Both groups were assessed twice: The e-learning group before and after the course; the control group was assessed at the same times. Primary outcome measure: increase in knowledge about genetics of epilepsies using questionnaires based on items formulated by experts (internal consistency, Cronbach's alpha = 0.86). Main hypothesis: greater increase of knowledge in the e-learning group compared to control group. Secondary outcome measures: assessment of the educational course and learning environment by participants and by tutors/e-moderators. Results: Significant time × group interaction and group effect (ANOVA, each p < 0.01) with regard to knowledge. At baseline, the groups did not differ with respect to knowledge about genetics of epilepsy. In contrast to the control group, the increase of knowledge in the e-learning group was highly significant (p < 0.001). The majority of the participants of the e-learning course was content with their personal learning process (75% agree, 15% strongly agree). Most of them reported a gain in competence in the treatment and counseling of people with epilepsy (38.9% agree, 50% strongly agree). All participants would recommend this course to others and all but one participant are interested in other e-learning courses. Conclusion: The study indicates e-learning courses are an appropriate tool to improve knowledge of physicians in genetics of epilepsy. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Summary: Purpose: To evaluate the efficacy of the educational program MOSES (Modular Service Package Epilepsy). It was developed to improve patients' knowledge and understanding about their epilepsy, its treatment, and psychosocial consequences. The program intends to improve patients' coping with the disease, to strengthen self-esteem, and to support patients to become experts in managing their epilepsy. Methods: A controlled, randomized study design was used to examine the efficacy of MOSES. Patients from 22 epilepsy centers in Germany, Austria, and Switzerland were randomly allocated to either MOSES group (treatment group) or waiting-list group (control group). The 242 patients were aged from 16 to 80 years. The MOSES group (n = 113) completed the questionnaires immediately before the educational course (T1) and 6 months later (T2), and the control group (n = 129), 6 months before (T1) and immediately before (T2) the course. The questionnaires included generic instruments (SF-36, Rosenberg self-esteem Scale, von Zerssen Depression Scale), and epilepsy-specific scales (Restrictions in Daily Life, Epilepsy-Related Fears, Coping with Epilepsy and Adaptation). Depression was used as a moderator variable. Seizure frequency and satisfaction with therapy also were assessed. Multivariate analysis of variance (MANOVA) with repeated measurements and univariate analyses of variance were performed. Results: The MANOVA showed that participants of the educational program improved significantly. Univariate analyses revealed improvements in knowledge (p < 0.001) and coping with epilepsy (p = 0.004), whereas important effects of MOSES on other epilepsy-specific measures and on generic questionnaires (SF-36, self-esteem) were not found. Participants of the MOSES program also improved in seizure outcome (p = 0.041) and became more satisfied with the therapy [better tolerability of antiepileptic drug (AED) therapy, fewer side effects; p = 0.014]. In addition, participants... [ABSTRACT FROM AUTHOR]

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. Methods: A population-based prospective study was performed between July 1, 1999, and June 30, 2000. All children aged 1 month to <15 years with a newly diagnosed epilepsy or epileptic syndrome were recorded by private pediatricians, EEG laboratories, and the two University Children's Hospitals in the neighboring cities of Heidelberg and Mannheim. The diagnoses were classified according to the International Classification of Epilepsies and Epileptic Syndromes of the International League Against Epilepsy (ILAE). Results: The total age-adjusted annual incidence rate was 60/100,000 (95% confidence interval, 42–84), with the highest incidence in the first year of life (146/100,000). Focal epilepsies or epileptic syndromes (58%; incidence rate, 35/100,000) were more common than were generalized ones (39%; incidence rate, 24/100,000), and 3% (incidence rate, 2/100,000) of the epilepsies or epileptic syndromes were undetermined. The rate of idiopathic (47%; incidence rate, 29/100,000) and symptomatic or cryptogenic epilepsies (50%; incidence rate, 30/100,000) was equal. No significant difference in incidence between boys and girls was found. Conclusions: Incidence rates for epilepsy in German children aged 1 month to <15 years are about equal to those of other countries in Europe and North America. In accordance with studies from the United States and from many European countries, incidence was highest in the first year of life, and no difference in the incidence between girls and boys was found. In Germany as throughout Europe, idiopathic generalized epileptic syndromes are more often diagnosed than in the United States. [ABSTRACT FROM AUTHOR]

Objective evidence is limited for the value of transition programs for youth with chronic illness moving from pediatric to adult care; however, such programs intuitively "make sense". We describe the strengths and weaknesses of a variety of transition programs from around the world for adolescents with epilepsy. Consequences of poorly organized transition beyond suboptimal seizure control may include an increased risk of sudden unexpected death in epilepsy (SUDEP), poor psychological and social outcome, and inadequate management of comorbidities. The content of transition programs for those with normal intelligence differs from those with intellectual disability, but both groups may benefit from an emphasis on sporting activities. Concerns that may interfere with optimal transition include lack of nursing or social work services, limited numbers of adult neurologists/epileptologists confident in the treatment of complex pediatric epilepsy problems, institutional financial support, and time constraints for pediatric and adult physicians who treat epilepsy and the provision of multidisciplinary care. Successful programs eventually need to rely on a several adult physicians, nurses, and other key healthcare providers and use novel approaches to complex care. More research is needed to document the value and effectiveness of transition programs for youth with epilepsy to persuade institutions and healthcare professionals to support these ventures. • Transition should reevaluate diagnosis, treatment plan, and psychosocial needs. • Epilepsy nurses can improve communication with patients and families during transition. • Patients with intellectual disability (ID) are at increased risk of unsuccessful transition. • Adult neurologists are not comfortable with some pediatric syndromes, drugs, and special diets. • Including transition in epilepsy and neurology training programs will be increasingly important. [ABSTRACT FROM AUTHOR]

Objective 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. Methods Questionnaires were sent to approximately 5,000 neurologists and neuropediatricians in 2014 regarding respondents' demographics, their working environments, and how often they discussed SUDEP, suicidal ideations on anticonvulsive medication, driving restrictions, and risks in daily life activities. Results In total, 519 surveys were completed (respondents' mean age: 45.5 years, 41.6% female, 66.9% adult neurologists, 31.0% neuropediatricians). A minority of 2.7% reported that they counseled all of their patients on SUDEP, 8.7% counseled most of the time (50-90%), 20.8% sometimes (10-49%), 44.5% rarely (1-9%), and 23.3% reported not counseling about SUDEP at all. In contrast, 92.9% reported that they counseled all patients about driving restrictions and 81.5% about risks in daily life activities. Suicidal ideations were discussed in 59.0% for some and in 3.3% for all patients, whereas 35.1% of respondents reported never discussing suicidal ideations. Independent predictors of not discussing SUDEP were no additional epilepsy training, no or uncertain SUDEP cases in the past, <10 years in practice, <25 epilepsy patients seen per quarter, and the opinion of a lack of consequences in SUDEP prevention. The opinion that SUDEP is a risk factor in particular patient groups and the attitude that all risks should be discussed predicted counseling on SUDEP. Significance Our findings show a discrepancy between guidelines and practice regarding the discussion of premature mortality due to SUDEP or suicidality. Both are not discussed at all by a substantial proportion of neurologists and neuropediatricians. This is in contrast to ubiquitous education about driving restrictions. Dissemination of knowledge among physicians about potential preventive strategies might increase the likelihood of discussion. Clinical practice guidelines are welcomed by the majority of physicians in this process. [ABSTRACT FROM AUTHOR]

Abstract: Background: It is known that most adult patients with epilepsy often have poor knowledge of their disorder, treatment options, and social and vocational consequences, despite the huge amount of information available. Being pressed for time, health care professionals often are not able to provide the repetitive counseling and instruction necessary to address epilepsy care adequately. Therefore educational programs are considered extremely important in filling the gap. Method: For German-speaking countries, two educational programs called famoses, modulares Schulungsprogramm Epilepsie fűr Familien [modular service package epilepsy for families], were developed by a multidisciplinary group of neuropediatricians, psychologists, social workers, and educators. The aims of the famoses programs are to improve children’s and parents’ knowledge about epilepsy and to help patients of childhood age and their parents achieve a better understanding of their disease, gain more self-confidence, and reduce specific fears regarding epilepsy. famoses comprises two different educational programs: famoses for kids with epilepsy within the developmental period of ages 7 to 13, and famoses for parents or caretakers. The programs are designed for interactive small-group education. Results: The child-centered educational program is based on a fictional story: The children are sailors on a virtual cruise, sailing from island to island, accompanied by educated trainers. On each island there is something new to discover about epilepsy. The parent (and caretaker)-centered educational program covers different topics—overview and content of the program, basic knowledge, diagnostics, therapy, prognosis and development, and living with epilepsy—within six modules. The program was implemented in Germany and Switzerland in the spring of 2005 and is now operating in different epilepsy centers. Conclusion: Within comprehensive therapeutic management of epilepsy, educational programs for patients, and for parents (caretakers) of children with epilepsy, are considered to be extremely important. Such educational programs have two main goals: to increase knowledge about the disorder, and to strengthen the patients’ responsibility for themselves, with the consequence of living with as few limitations as possible. famoses is an effective component of this comprehensive care. The program has been operating successfully in different epilepsy centers in Germany and Switzerland since the spring of 2005. [Copyright &y& Elsevier]

Education for patients, for families, for professionals, and for officials is one of the most important tools for improving knowledge about epilepsy and fighting discrimination. There are many educational initiatives worldwide, but they are often known only at a local level. Studies on epilepsy educational programs are rare and therefore published to a limited extent. The newly established International Bureau for Epilepsy (IBE) Education Commission enforces the exchange of educational activities and best practices, discussing education content and topics, target groups, and their educational needs, timing, tutors, and funding. A brief review of examples of all continents will be given. The needs for studies and for more exchange and closer cooperation will be addressed with proposals for further actions. • The newly established Education Commission of IBE presents examples of good educational practice. • Education on epilepsy focus not only to patients and relatives but also to the public and officials. • Target groups with educational needs are listed. [ABSTRACT FROM AUTHOR]

Education for patients, for families, for professionals, and for officials is one of the most important tools for improving knowledge about epilepsy and fighting discrimination. There are many educational initiatives worldwide, but they are often known only at a local level. Studies on epilepsy educational programs are rare and therefore published to a limited extent. The newly established International Bureau for Epilepsy (IBE) Education Commission enforces the exchange of educational activities and best practices, discussing education content and topics, target groups, and their educational needs, timing, tutors, and funding. A brief review of examples of all continents will be given. The needs for studies and for more exchange and closer cooperation will be addressed with proposals for further actions. • The newly established Education Commission of IBE presents examples of good educational practice. • Education on epilepsy focus not only to patients and relatives but also to the public and officials. • Target groups with educational needs are listed. [ABSTRACT FROM AUTHOR]

The objective of this study was to perform a cross-cultural adaption and psychometric evaluation of the Spanish version of the Satisfaction with Epilepsy Care (SEC) questionnaire and analyze patient satisfaction with epilepsy care. Transcultural adaptation and validation of the SEC were carried out using translation and back-translation with pilot testing and an expert panel. The SEC-E (Spanish) was analyzed in 213 patients with epilepsy to examine construct and criterion validity and internal consistency. The SEC-E achieved conceptual, semantic, and content equivalence with the original version. For content validity, one question was eliminated from the original questionnaire as it has little relevance in our cultural setting. Positive correlations for criterion validity were obtained using the gold standard measure (Satisfaction in Hospitalized Patients scale). Construct validity replicated the three dimensions of the original questionnaire. The scale showed adequate reliability through internal consistency (Cronbach's α of 0.94) and temporal stability on retest (n = 85). Patients scored (0 to 100) 77.5 [standard deviation (SD): 19.9] for satisfaction with communication, 76.9 (SD: 17) for organization, and 67.2 (SD: 22.1) for information. The SEC-E is a valid and reliable tool for the assessment of educational interventions aiming to improve the quality of care in patients with epilepsy in Spanish clinical practice. The results showed a good level of patient satisfaction with epilepsy care. • A Spanish language adaptation of the SEC questionnaire was made using the translation and back-translation process. • A panel of patients and another of experts were used to assess cultural adaptation and content validity. • A psychometric test was carried out to check Cronbach's alpha. Reliability was also verified by re-testing. • Criterion validity was assessed by comparison with the Satisfaction in Hospitalized Patients Scale. • Construct validity was verified using explanatory factor analysis to examine the underlying structure of the survey. [ABSTRACT FROM AUTHOR]