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.     

Presurgery Expectations, Postsurgery Satisfaction, and Psychosocial Adjustment After Epilepsy Surgery

Summary: Purpose: The medical benefits of epilepsy surgery are well documented, but the psychosocial consequences of surgery have received less attention. This is especially true of the roles of expectations and satisfaction in postsurgery functioning. The present study was designed to examine the relationships between expectation, satisfaction with surgery, and psychosocial functioning in patients and their significant others before and after epilepsy surgery. Methods: The neuropsychology findings of 79 patients undergoing epilepsy surgery were examined from assessments made before, 2 months after, and 1 year after anterior temporal lobectomy (ATL) was performed. The Minnesota Multiphasic Personality Inventory (MMPI) and the Washington Psychosocial Seizure Inventory (WPSI) were used to assess psychosocial functioning. A subset of 32 patients and their significant others were followed prospectively with an additional semistructured interview to assess expectations for and satisfaction with surgery outcome. Results: Before surgery, patients showed considerable problems with psychosocial adjustment. After surgery, patients in the seizure-free group showed improvements on the psychosocial measures at both follow-ups, whereas patients with continued seizures showed improvement at the 2-month follow -up and then a decline to baseline or worse at the time of the 1-year follow-up. Subjects who were studied prospectively had high presurgery expectations for seizure elimination. After surgery, subjects whose expectations were met reported high satisfaction whereas subjects whose expectations were not met reported low satisfaction. Satisfaction with surgery was associated with better psychosocial functioning. Conclusions: Such data help elucidate the ways in which successful epilepsy surgery results in improved psychosocial functioning. The results identify ways to increase the likelihood that both patients who are seizure-free and those with reduced seizure frequency may benefit from surgery.     

Outcome Assessment in Epilepsy: Comparative Responsiveness of Quality of Life and Psychosocial Instruments

Summary: Purpose: Few data exist on the ability of instruments to detect within-patient change over time in epilepsy, a property referred to as responsiveness. Our aim was to compare the responsiveness of three instruments [i.e., Epilepsy Surgery Inventory-55 (ESI-55) and Washington Psychosocial Inventory (WPSI), both epilepsy specific, and Symptom Checklist-90–Revised (SCL-90–R), non-epilepsy specific]. Methods: Instruments were administered at baseline and at 1 year in a prospective cohort of surgically (43) and medically (14) treated patients with temporal lobe epilepsy. Coefficient of Responsiveness and relative efficiency were computed for each scale and for the dimensions of mental health, physical health, and role function. Results: The ESI-55 contained the most responsive scales, whereas SCL-90–R contained the largest number of scales with moderate responsiveness. The largest number of scales with low responsiveness belonged to the WPSI. Sensitivity to between-treatment differences in change was highest for ESI-55 and SCL-90–R. The most efficient scales in detecting differences between treatment groups in the mental, physical, and role-function dimensions were ESI-55 emotional well-being, ESI-55 health perceptions, and SCL-90–R hostility, respectively. Conclusions: Our results support the responsiveness of ESI-55 scales and suggest that SCL-90–R is a responsive tool for the assessment of psychologic function and distress in epilepsy. Comparatively, WPSI is relatively unresponsive to small or medium-size changes.     

The Clinical Course of Epilepsy and Its Psychosocial Correlates: Findings from a U.K. Community Study

As part of a large community-based study, we retrospectively examined the clinical course of epilepsy in an unselected population of people who had a recent history of seizures or were receiving antiepileptic drugs (AEDs). Clinical information was collected from medical records, and information about psychosocial functioning was obtained by means of postal questionnaires sent to identified subjects. The response rate to the postal questionnaire was 71%. There were some deficiencies in the recording of clinical data, which is not unusual since data were taken from records held by primary physicians rather than from hospital clinics. Nevertheless, findings regarding the clinical course of epilepsy corresponded to those of earlier studies. Fifty-seven percent of the sample had had at least a 2-year seizure-free period and 46% of subjects were currently in a remission of at least 2-year duration. There was a clear relationship between current seizure frequency and levels of anxiety and depression, perceived impact of epilepsy, perceived stigma, and marital and employment status. The relationship of seizure frequency and other clinical variables to psychosocial function was explored by multivariate analysis techniques. The amount of variation in scores on the various measures of function accounted for by the clinical variables was small. The most important predictor was current seizure activity, which was the first variable to enter the regression analyses for six of the eight measures of psychosocial function considered. Age at epilepsy onset also emerged as a significant predictor for depression, stigma, and marital status. In individuals with epilepsy in remission, there was little evidence that psychosocial functioning was associated with length of remission, a finding which may in part reflect the nature of this study population. The results indicate that there are several more important predictors of psychopathology and social dysfunction in epilepsy and suggest several implications for treatment interventions.     

Neuroticism in Temporal Lobe Epilepsy: Assessment and Implications for Pre- and Postoperative Psychosocial Adjustment and Health-Related Quality of Life

Summary: We assessed 77 candidates for epilepsy surgery to determine the association among neuroticism (a dimension of personality characterized by chronic negative emotions and behaviors), psychosocial adjustment as measured by the Washington Psychosocial Seizure Inventory (WPSI), and health-related quality of life (HRQOL) as measured by the Epilepsy Surgery Inventory 55 (ESI-55). Minnesota Multiphasic Personality Inventory 2 (MMPI-2) Neuroticism scale scores were significantly correlated with many domains of patient-perceived psychosocial adjustment and HRQOL regardless of frequency or type of seizures. We then followed 45 of the patients who subsequently underwent epilepsy surgery to determine the influence of neuroticism on postoperative functioning. Two-way analysis of variance (ANOVA) indicated that patients with high preoperative neuroticism had significantly poorer postoperative psychosocial adjustment and HRQOL scores than patients who had low or moderate preoperative neuroticism scores. These results support the validity of the MMPI-2 as a useful measure of neuroticism. Preoperative neuroticism has an important influence on postoperative psychosocial adjustment and HRQOL that is independent of postoperative seizure outcome. Understanding the influence of personality variables, such as neuroticism, on psychosocial functioning both before and after epilepsy surgery is essential in managing intractable seizures.     

The Development and Standardization of a Spanish Version of the Washington Psychosocial Seizure Inventory

The Washington Psychosocial Seizure Inventory (WPSI) was translated from English into Spanish, reviewed by a bilingual panel, and then standardized on 107 Spanish-speakers and 45 bilinguals in Miami, Florida. The 152 subjects were active clients of the Epilepsy Foundation of South Florida. Subjects were assigned to one of three treatment groups: Monolingual (Spanish WPSI only), Bilingual (Spanish WPSI first), or Bilingual (English WPSI first). All three groups were given two administrations of the WPSI at least 30 days apart. Resulting data were submitted to measures of split-half reliability, test-retest reliability, and concurrent validity. The psychosocial scales were found to be internally consistent and showed stability across administrations with a marked similarity between the Spanish and English forms. The concurrent validity of the Spanish scales was established at the 0.01 level of significance or better. It was concluded that the Spanish WPSI was statistically comparable to the original English language version, thus establishing a basis for its usage in the psychological assessment of Spanish-speaking epileptics throughout the world.     

Cerebral Arteriovenous Malformations and Epilepsy: Factors in the Development of Epilepsy

Sixty-one patients of a population of 343 with cerebral arteriovenous malformations (AVMs) were diagnosed with seizures. Their AVMs were larger (p less than 0.02) and more frequently superficial (p less than 0.05) as compared with the AVMs of patients who were diagnosed with haemorrhage. The factors influencing the development of denovo seizures in patients with diagnosed AVMs were surgical treatment, a presentation with haemorrhage, and age at diagnosis.     

Psychosocial problems among adults with epilepsy

The psychosocial functioning of adults with epilepsy was evaluated by the administration of the Washington Psychosocial Seizure Inventory, which was given to five groups of patients across the United States. In four of the five samples, the results were indistinguishable from one another, with similar psychosocial problems suggested despite substantially different patient characteristics and referral sources. Emotional, interpersonal, vocational, and financial concerns were most commonly found, as well as difficulties in dealing with seizures. Persons in the fifth sample were selected somewhat differently; they had fewer vocational and financial problems, but were otherwise similar. The results have implications for the study of psychosocial problems in epilepsy and for the establishment of treatment programs.     

Psychosocial and neuropsychological function in children with epilepsy

This paper reviews the psychosocial and neuropsychological effects of epilepsy on children and families across environments in which children function, specifically home and school. Epilepsy is a chronic disorder, affecting one percent of the population, that alters neurocognitive functioning effecting learning, memory and family adaptation. A review of epilepsy and its impact on quality of life, family and school function and psychiatric comorbidity are discussed.     

Psychosocial impact of epileptic seizures in a Dutch epilepsy population: a comparative Washington Psychosocial Seizure Inventory study

PURPOSE: The psychosocial functioning of epilepsy patients from the Netherlands was investigated and compared with results from other countries. The impact of epilepsy was also studied in two different groups of Dutch epilepsy patients, inpatients and outpatients. METHODS: The Washington Psychosocial Seizure Inventory (WPSI) was used to study the psychosocial problems of 134 Dutch outpatients and 181 Dutch inpatients. WPSI profiles were compared with those from the former German Democratic Republic (West Germany), Finland, Canada, the United States, Chile, and Japan. RESULTS: For the Dutch epilepsy patients, most of the psychosocial problems were experienced by inpatients; they had serious problems in emotional, interpersonal, and vocational adjustment, adjustment to seizures, and overall psychosocial functioning. Seizure-free outpatients, however, experienced significant problems only in the emotional adjustment area. Comparing the outcomes of various countries, Dutch outpatients and patients from West Germany and Finland experienced the least psychosocial difficulties, whereas epilepsy patients from Chile, Japan, and Canada have serious problems in most areas of psychosocial functioning. CONCLUSIONS: Patients with epilepsy experience psychosocial problems, although the amount of psychosocial difficulties depends on the seizure frequency and the culture that patients live in.     

癫痫患者切除病灶病理学分析

目的分析癫痫患者切除的致痫灶标本的病理形态学特点。方法将切除的新鲜脑内致痫灶组织标本进行常规处理，HE染色、特殊染色及免疫组化染色，显微镜下观察其病理学改变。结果133例患者中，原发性癫痫58例（43．6％），包括皮质微发育不良15例，局灶性皮层发育不良（FCD）ⅠA14例，FCDⅠB8例，FCDⅡA11例，FCDⅡB6例，皮层发育不良2例，皮层发育畸形2例；继发性癫痫75例（56．4％），包括肿瘤60例，其中胶质瘤41例，其他原发和转移恶性肿瘤9例，良性肿瘤10例；非肿瘤者15例。结论癫痫是多种病因、多种病变引起的一组疾病，其病理形态学最常见的是脑肿瘤，其次是脑原发性结构异常。     

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.     

Psychometric properties of the Dutch version of the Washington Psychosocial Seizure Inventory

PURPOSE: The psychometric properties of the Dutch version of the Washington Psychosocial Seizure Inventory (WPSI) were investigated. METHODS: The dimensional structure, reliability, and validity of the WPSI scales were assessed in 218 patients with epilepsy. The association with relevant patient and epilepsy characteristics also was studied. RESULTS: An exploratory seven-factor principal components analysis was compared with a confirmatory factor analysis, and a loss of 3.36% of total variance was found. To increase the homogeneity of the scales, 30 items with low factor loadings or highest factor loading on the wrong clinical scale were excluded. This resulted in a higher amount of explained variance and improvement of the factor loadings of the remaining items. The reliability and validity of the WPSI scales was satisfactory to good. No clinically relevant associations were found between the WPSI scales and patient and epilepsy characteristics. CONCLUSIONS: The factor structure, reliability, and validity of the Dutch translation of the WPSI are good and comparable to the original English version of Dodrill. The results demonstrate that shortening the WPSI makes the inventory more reliable and the clinical scales less dependent on each other.     

Pharyngeal Dysesthesias as an Aura in Temporal Lobe Epilepsy Associated with Amygdalar Pathology

PURPOSE: Pharyngeal dysesthetic auras are typically described with centrotemporal and opercular seizure-onset localizations. In this report we describe the fourth case in literature with temporal lobe seizures, apparently secondary to an amygdalar lesion on magnetic resonance imaging (MRI), presenting with prominent pharyngeal dysesthesias as the initial, or only, seizure manifestation. METHODS: Because of diagnostic uncertainty regarding the nature of the pharyngeal sensations, our case underwent prolonged extracranial video-EEG monitoring. RESULTS: Video-EEG information documented the epileptic origin of the dysesthesias and was concordant with the side and location of the amygdalar lesion. CONCLUSIONS: Pharyngeal dysesthetic auras may be produced by epileptic activity originating from the amygdala, and perhaps other mediotemporal structures. The underlying topography of this aura is not known with certainty, and it may reflect seizure spread from the amygdala and adjacent areas to the closely interconnected insular and opercular cortex, whose secondary activation could elicit similar sensations.     

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.     

A Psychosocial Approach to Epileptic Patients

Summary: A psychoeducational approach was taken with 174 epileptic patients. Using this approach, no family problems were recognized among patients with idiopathic generalized epilepsy (IGE) or among those with symptomatic generalized epilepsy (SGE). However, 11 patients with temporal lobe epilepsy (TLE) and 1 patient with non-temporal lobe epilepsy (non-TLE) did exhibit family problems indicating that such problems involving IGE or SGE cases can be prevented through educational programs using a psychoeducational approach. This fails, however, to prevent such problems for TLE or non-TLE cases. Furthermore, small group psychotherapy was given to 10 patients with intractable TLE. They were directed to make self-evaluations regarding therapeutic factors originally introduced by Yalom but specially modified for these particular patients. Relatively high evaluations were given on every factor when compared with the results of individual psychotherapy. These results point out the importance of providing such psychotherapeutic approaches as group psychotherapy and self-help groups in addition to educational programs in order to enhance the quality of life (QOL) of epileptic patients and their families.     

Epilepsy in Pakistan: Stigma and Psychosocial Problems. A Population-Based Epidemiologic Study

Summary: Purpose: To assess the stigmatization and psycho-social problems of persons with epilepsy in Pakistan. Methods: A population-based, cross-sectional epidemiologic study of 241 persons with epilepsy identified from an at-risk population of 24,130 individuals (64.7% from urban and 35.3% from rural areas). Of these patients, 77% suffered from recurrent non-febrile generalized convulsions. We evaluated degree of stigmatizations (i.e., avoidance by friends, neighbors, and others), and the effect of epilepsy on other psychosocial aspects (e.g., marriage), and also the relationships between gender and level of education of the patients, and stigmatization. Results: Patients with epilepsy in Pakistan do not appear to be highly stigmatized, but their education and grades are affected by the disorder. They have difficulty performing activities of daily living and find it hard to make decisions about whether to marry or to have children. Women believed that they were more dangerous to others, received less help from their families, and, more frequently than men, encouraged others to avoid them. Women were also more likely than men to express the belief that people with epilepsy should not marry, but in fact, women more frequently married as compared men—a fact influenced by social and cultural pressures, including pressure from family, because it is nearly always the responsibility of the parents to arrange the marriage of a daughter. Influence of education indicates that people with epilepsy who have higher education, as compared with those with less education, had fewer children, were less often avoided by their classmates and neighbors, had fewer problems with plans for education, less frequently encouraged others to avoid them, were more frequently married, and believed that they were more dangerous to others. Most people believed that their conditions had a physical basis; only 3.1% attributed their epilepsy to supernatural causes. Conclusions: Stigmatization regarding epilepsy has not been proven to be an important feature in the culture of Pakistan because none of the observations are statistically significant as per P-value.     

Psychosocial adjustment of people with epilepsy in Hong Kong

PURPOSE: In light of the issues associated with the psychosocial adjustment of people with epilepsy that have been widely reported, this study examined these issues within a Chinese cultural context. METHODS: Fifty patients with epilepsy completed The Washington Psychosocial Inventory, the Coping Inventory for Stressful Situations, and a questionnaire that assessed their psychosocial difficulties and coping styles. Multiple regression procedure was used to examine the strength of various medical and social factors in predicting the psychosocial adjustment problems of these participants. RESULTS: Social factors, such as self-perception and coping strategies, were more powerful predictors of psychosocial adjustment in people with epilepsy than the medical factors associated with epilepsy. CONCLUSIONS: These findings showed that psychosocial maladjustment is a significant issue for people with epilepsy in Hong Kong. The emerging importance of social factors as predictors of psychosocial adjustment in epilepsy, as compared with medical factors, highlights the need for developing tailored counseling therapy and social support groups for people with epilepsy.