Psychosocial Weil-Being and Epilepsy: An Empirical Study

The study examined the self-esteem, life fulfillments, social and interpersonal difficulties, general physical health, worries, and happiness of 392 adults with epilepsy using various psychometric instruments. A questionnaire method was used, and the sample was drawn from urban and rural epilepsy support groups in several regions of Great Britain and Ireland and a hospital outpatient population. The findings indicated general low well-being among the epilepsy sample when compared with a nonepilepsy sample matched for age and sex. Factors associated with high and low well-being within the epilepsy sample were also investigated. People's perceptions of themselves and of their epilepsy were strongly related to overall well-being, and seizure frequency, ratings of certainty of diagnosis, time since diagnosis, and a diagnosis of absence seizures also seemed of some significance. From a range of background factors, only employment status showed any significant association with well-being. The research findings have implications for the management of people with epilepsy and suggest that ratings of subjective experience could be usefully incorporated into future research into the quality of life of people with epilepsy.     

Sepulveda Epilepsy Education: The Efficacy of a Psychoeducational Treatment Program in Treating Medical and Psychosocial Aspects of Epilepsy

The present study evaluated the efficacy of the Sepulveda Epilepsy Education program (SEE), using a controlled outcome design. SEE is a 2-day psychoeducational treatment program designed to provide medical education and psychosocial therapy. Thirty-eight outpatients, matched according to seizure type and frequency, were randomly assigned to treatment (n = 20) or waiting-list control (n = 18) groups. The major outcome measures used were a 50-item true-false test specifically designed to evaluate the SEE program, the Washington Psychosocial Seizure Inventory, the Beck Depression Inventory, Lubin's Depression Adjective Checklist, the State-Trait Anxiety Inventory, the Acceptance of Disability Scale, and Sherer's Self-Efficacy Scale. Significant differences between the two groups were found on the three major subscales of the 50-item true-false test. The treatment group demonstrated a significant increase in overall understanding of epilepsy, a significant decrease in fear of seizures, and a significant decrease in hazardous medical self-management practices. In addition, an objective measure of blood levels of antiepileptic drugs (AEDs) showed the treatment group to have a significant increase in medication compliance.     

Epilepsy and Mortality in Africa: A Review of the Literature

Summary:  Problem: The prevalence of epilepsy is high in many areas of Africa. This condition is stigmatized, and there are limited health personnel and facilities for diagnosis and treatment. A huge treatment gap is suspected for epilepsy, and data suggest that nearly 80–85% of people with epilepsy have never been diagnosed or treated. It is reported worldwide that the mortality among people with epilepsy is two- to threefold higher than in general population. An increase of at least this magnitude is suspected in Africa, but there are very few data. Verbal autopsy studies may be one way of carrying out studies of mortality for epilepsy in Africa because these methods do not rely on autopsies, which are rare, or upon death certificates, which are a poor source of information on death in Africa.
Methods: This paper presents the literature on mortality after seizures in Africa, although there are few studies of mortality among people with epilepsy in Africa.
Results: The existing studies suggest an increased risk of dying and a greater proportion of deaths that are epilepsy-related. One study reports a sixfold increase in mortality in people with epilepsy. This is higher than the two- to threefold increase reported in developed countries.
Conclusions: Considering the high prevalence of this condition, the public health impact of epilepsy mortality is likely to be enormous.     

Total Patient Care in Epilepsy

Summary: The aim of total care in epilepsy is to ensure the best possible management for each individual patient. Although pharmacotherapy for reduction or suppression of seizures is the basis of treatment in epilepsy, social and environmental problems are as likely to distress patients as continuing seizures. One often neglected aspect of management is the provision of adequate information for patients and relatives with regard to the various aspects of the seizure disorder. Better education of society regarding epilepsy is necessary to remove the many preconceptions and prejudices that still prevail. It is important to encourage self-confidence in the patient and to avoid overprotection. Restrictions on lifestyle, including driving and employment, should be decided on a case-by-case basis, and only imposed if really necessary. Patients with epilepsy refractory to treatment should have access to specialized referral centers and institutions. One of the major goals of total patient care should be to help the patient with a seizure disorder lead a normal life, insofar as this is not prevented by additional mental retardation or cognitive dysfunctions.     

Refractory Calculation-induced Idiopathic Generalized Epilepsy: A Case Report and Review of the Literature

Summary:  We report a case with calculation-induced idiopathic generalized epilepsy (IGE) that, unlike most patients with IGE, was refractory to medications. This patient had a family history of (1) a similar condition in a relative of hers who, however, did not have identical manifestations, and (2) a mother who had migraine. Our observations illustrate that the occurrence of IGE in families usually follows rather complex patterns of inheritance and that some of them can be refractory to therapy.     

Psychosocial Consequences of Postoperative Seizure Relief

Summary: To address the question of whether complete seizure relief has a positive effect on psychosocial functioning in patients with temporal lobe epilepsy, a follow-up study was conducted at the Montreal Neurological Institute. The approach was one of "before-after" study, with focus on the successfully operated patients, those in whom complete seizure relief was obtained. The Washington Psychosocial Seizure Inventory, specifically developed and validated for use with epilepsy patients, was used for psychosocial assessments. Of 30 surgically treated patients screened for the study, 15 gained complete relief from seizures. At 1-year postoperative followup, they showed reductions in their problem scores on all but one of eight psychosocial scales; the average reduction ranged from 24% in Vocational Adjustment to 60% in Adjustment to Seizures. In the areas of Emotional Adjustment and Interpersonal Adjustment reductions were 37 and 48%, respectively. Among the component items, improvement was greatest in ability to concentrate and make decisions, confidence in interpersonal skills, ability to express personal opinions, and perception by others. No appreciable changes occurred in the 15 patients who did not gain complete relief of seizures; indeed, on six of the eight scales they showed a modest increase in their problem scores. This study provides evidence that complete relief from seizures leads to appreciable improvements in psychosocial well-being, manifest as early as 1-year postoperatively, in young adult patients.     

Socioeconomic Accompaniments of Severe Epilepsy

Summary: : Limited quantitative research has been undertaken on the social accompaniments of severe epilepsy. In this study we present new data from 92 patients with uncontrolled seizures necessitating admission to a special assessment unit in the United Kingdom. Comprehensive information on the medical, educational, and social history of each subject was obtained; moreover, they completed the Social Problems Questionnaire, which examines the respondent's level of satisfaction with various aspects of living including employment, finances, housing, etc. Thirty-nine percent of the sample reported moderate or severe dissatisfaction in four problem areas. The most frequently reported problems were with social contacts (73%) and employment (71%). The significance of these findings is discussed and some remedial strategies outlined.     

Neurological Morbidity of Severe Epilepsy

Summary: : The “severity” of a disease is a relative expression and its definition will vary depending on the perspective of the observer. The patient's subjective perception of the disease, the way it is regarded socially by the community, and the doctor's objective assessment rarely coincide. In fact, they are frequently diametrically opposed. As far as the patient's personal perception of epilepsy is concerned, there has apparently been no satisfactory attempt thus far at a systematic grading of the subjective handicap, despite the growth of interest in psychological matters and the self-help movement. Similarly, social ability or disability cannot be adequately assessed on the basis of medical criteria such as frequency and type of seizures. We present a grading system which will serve as an example of an appropriate method of assessing social abilities, and which will permit the patient's occupational potential to be estimated in relation to the risk of accidents resulting from seizures. From the medical point of view, the impairment of a patient's abilities due to epilepsy is a function of the patient's responsiveness to treatment. We present a critical review of the factors which have an effect on the therapeutic prognosis: the causes of epilepsy, underlying structural lesions, the incidence of convulsive status epilepticus, various types of attacks, and the different epileptic syndromes. Taking two examples–epilepsy presenting in the form of absence and epilepsy with complex focal seizures–we show that ultimately the “severity of epilepsy” can only be defined from the medical standpoint on the basis of several factors whose value is of a predictive nature.     

Familial Aggregation of Epilepsy and Clef ting Disorders: A Review of the Literature

Nine studies have attempted to address the issue of whether familial aggregation of epilepsy and clefting disorders exists. This is an important issue as a genetic predisposition to clefting among relatives of individuals with epilepsy could potentiate any teratogenic effects of antiepileptic drugs (AEDs). The summary relative risk estimate derived from published studies does not show that epilepsy and clefting disorders aggregate in families. Rather, these studies suggest that the clefting abnormalities in offspring of women with epilepsy receiving AEDs are most likely related to a teratogenic effect of these medications.     

Neurobiology of Behavior: Anatomic and Physiological Implications Related to Epilepsy

Summary: Controversy exists concerning whether epileptic seizures can produce enduring alterations in neuronal function that cause interictal behavioral disturbances. Although arguments favoring the occurrence of epilepsy-induced disorders of behavior must not be presented in a way that adds to the stigmata associated with epilepsy, it is not in the best interest of epileptic patients to deny this possible relationship and overlook an opportunity to prevent or treat a major cause of disability. There is evidence to suggest that psychosocial factors cannot account for all the behavioral problems suffered by patients with epilepsy. Behavioral disturbances ascribed to antiepileptic drugs and specific structural lesions may also be due, in part, to epileptogenic mechanisms. Some interictal behavioral disturbances may actually reflect unrecognized ictal events. Most importantly, data obtained from clinical research and animal investigations suggest testable hypotheses of how recurrent epileptic seizures can alter neuronal function in ways that would predispose to specific disruptive interictal behaviors, such as aggression, depression and schizophrenia.     

Perceptions of Control in Adults with Epilepsy

Summary: That psychosocial problems are extant in epilepsy is evidenced by a suicide rate among epileptic persons five times that of the general population and an unemployment rate estimated to be more than twice that of the population as a whole. External perceptions of control secondary to repeated episodes of seizure activity that generalize to the social sphere have been implicated as causes of these problems. The hypothesis that individuals who continue to have seizures become more and more external in perceptions of control was tested by a survey mailed to a sample of individuals with epilepsy in a metropolitan area of the Midwest. Dependent variables were scores on instruments measuring locus of control and attributional style. The independent variable was a measure of seizure control based on present age, age at onset, and length of time since last seizure. Gender, socioeconomic status, and certain parenting characteristics were included as control variables, as they are also known to affect perceptions of control. Analysis by multiple regression techniques supported the study's hypothesis when perceptions of control was conceptualized as learned helplessness for bad, but not for good, events. The hypothesis was not confirmed when perceptions of control was conceptualized as either general or health locus of control.     

Overview and Perspectives of Employment in People with Epilepsy

Summary:  Even though it is now the viewpoint of the majority of professionals working in epilepsy care that most people with epilepsy should and can perform on the labor market as does anybody else, research tells a different story. Most figures concerning employment rates of people with epilepsy indicate that they do not perform as well on the labor market as others do. Although both research figures and research groups vary, generally unemployment rates are higher for people with epilepsy than for the general population. Early studies showed that the situation for people with epilepsy was rather grim. Later studies showed similar outcomes. Unemployment rates vary between groups and countries. Research shows that being employed is an important ingredient of the quality of life of people with epilepsy. The World Health Organization also recognizes the importance of employment as a part of social health, and therefore, improving the quality of life. It is important to know the perspectives on the labor market for people with epilepsy and what the possible problems are. I describe a Dutch research project and give an overview of the findings concerning the employment and consequent employability of people with epilepsy and questions pertaining to employment and epilepsy. Possible interventions [i.e., public education and employment programs for people with epilepsy with the aim to improve the (re)integration of people with epilepsy into the labor market, thus improving the quality of life of (potential) employees with epilepsy], are described extensively.     

Cysticercosis and Epilepsy: A Critical Review

Summary: Neurocysticercosis (NC) remains a major public health problem in developing and some developed countries. Currently, the best procedures for diagnosing NC are neuroimaging studies. Immunoserologic assays, such as enzyme-linked immunoelectrotransfer blot assay (EITB) or enzyme-linked immunosorbent assay (ELISA), detect antibodies against Taenia solium, or cysticercus. Consequently, they are useful in identifying a population at risk of contact with the parasite but do not necessarily indicate a systemic active infection. Most seropositive individuals are asymptomatic. No data from prospective studies concern the proportion of these individuals that will develop seizures or other neurologic symptoms. There is a discrepancy between the results of serologic assays and neuroimaging studies: >50% of those individuals with NC diagnosed by computed tomography (CT) scan test EITB negative. Pathophysiologic classification of NC into active, transitional, and inactive forms permits a good correlation between clinical manifestations and neuroimaging procedures and facilitates medical and surgical management and research. The most frequent clinical manifestations of NC are seizures. We assume that NC is the main cause of symptomatic epilepsy in developing countries; however, no case-control or cohort studies demonstrate this association. Most patients with NC with seizures have a good prognosis; nevertheless, further studies analyzing factors related to recurrence of seizures and possibilities of discontinuation of antiepileptic medications (AEDs) are needed. Regarding treatment of NC with antihelminthic drugs, no controlled clinical trials exist that establish specific indications, definitive doses, and duration of treatment. The most effective approach to taeniasis/cysticercosis infection is prevention. This should be a primary public health focus for developing countries. We critically review the available information regarding the epidemiology and diagnosis of human cysticercosis, the physiopathology and imaging correlation of the parasite in the central nervous system (CNS) of the host, the relation between seizures or epilepsy and NC, and the issues surrounding the treatment and prognosis of NC, including the use of antihelminthic therapy.     

Cerebral Neurocytoma: An Unusual Cause of Refractory Epilepsy. Case Report and Review of the Literature

Summary: We report a patient with medically refractory complex partial seizures (CPS) caused by a cerebral neurocytoma located near the amygdala. Neurocytoma represents an important addition to the differential diagnosis and, in particular, must be differentiated from oligoden-droglioma and dysembryoplastic neuroepithelial tumor. Accurate pathological differentiation has therapeutic and prognostic implications.     

Cross-Cultural Adaptation and Use of the Epilepsy Psychosocial Effects Scale: Comparison Between the Psychosocial Effects of Chronic Epilepsy in Sweden and the United Kingdom

Summary: Purpose: To establish Swedish weightings for the Epilepsy Psycho-Social Effects Scale (EPSES) and examine differences between Sweden and the U.K. in attitudes toward chronic epilepsy.
Methods: After translation and back-translation of the EPSES into Swedish, weightings were established through a paired comparison study in which 24 epilepsy professionals participated. The EPSES was then given to a hospital-based sample of 57 patients with chronic epilepsy and the results compared with a British sample matched for age, sex, and frequency of seizures.
Results: In the professional judgments of the EPSES statements, there were statistically significant differences in only four of 42 statements. Attitudes to employment, to medication, and to fear of seizures were considered more serious in the U.K., whereas social isolation was considered more a problem in Sweden. Patient attitudes to chronic epilepsy were found to be largely similar in the U.K. and Sweden; however, attitudes to employment, to the future, and to fear of seizures were significantly more a problem for patients in the U.K.
Conclusions: The results indicate a great similarity in the interpretation of problems as measured by the EPSES in the U.K. and in Sweden. The differences in attitudes found are discussed in relation to economic and legislative differences between the two countries. Social as well as cultural differences should be taken into account when using standardized questionnaires. It is suggested that culturally specific weightings should be calculated and that these should be reevaluated at regular intervals.