Uptake and Costs of Care for Epilepsy: Findings from a U.K. Regional Study

Summary: Purpose: Epilepsy is a common neurological condition, with significant resource implications for the health services, but few studies to date have examined the uptake and costs of care for this condition. As part of a large prevalence study of epilepsy conducted in one U.K. Health Region, we investigated both direct and indirect costs of epilepsy care and measured and valued the direct costs.
Methods: Data about service use were obtained from primary physician records and patient questionnaires. Unit costs for each item of resource use were generated from several sources.
Results: The greatest direct health care cost is that of hospital-based care. Pharmaceutical services also represent a significant element of the cost of epilepsy, the financial costs of prescribing newly developed antiepileptic drugs (AEDs) being large relative to those of the older drugs; therefore, the benefits derived from their use must be carefully assessed. The importance of good seizure control is amply illustrated by the findings about the differential costs associated with epilepsy of varying severity. The direct costs of caring for people with poorly controlled epilepsy are significant, with more than half the total cost of epilepsy care accounted for by patients with frequent seizures even though this group represented only a quarter of all patients in the present study.
Conclusions: Our data emphasize the importance of optimizing seizure control as a means of reducing the costs of epilepsy, not only to the person with the condition, but also to society.     

Psychosocial Sequelae of Epilepsy: The Role of Associated Cerebral Pathology

The psychosocial problems of a group of subjects with idiopathic epilepsy and another with posttraumatic epilepsy were assessed using the Washington Psychosocial Seizure Inventory (WPSI). A comparison between the two aetiological groups suggests that the associated cerebral pathology is the salient epilepsy-related factor in the emergence of psychosocial disability in a proportion of people with epilepsy. It is suggested that cerebral pathology may account for variations in previous psychosocial comparisons and future research should minimise possible confounding by attempting to control this factor.     

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 Natural History of Untreated Epilepsy in a Rural Community in Africa

The duration of epilepsy was evaluated in over 460 previously untreated patients who attended newly established epilepsy clinics in a rural area of Malawi. The mean duration at first attendance was 6.5 years. It was found that as the duration of active epilepsy increased, the number of patients having epilepsy of a given duration decreased. Possible explanations for this result, such as an increasing incidence of epilepsy or a high mortality rate, are considered, but thought to be unlikely. Since the distribution of patients with epilepsy of differing durations is similar to that described in a study carried out in Tonbridge, Kent, England, where the number of patients in remission was found to increase over time, it is postulated that the observed distribution also reflects remission, and that spontaneous remission of epilepsy is a frequent occurrence, independent of antiepileptic drug treatment.     

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.     

Vascular Determinants of Epilepsy: The Rotterdam Study

Summary: Purpose: To investigate the relation between vascular determinants and epilepsy in an elderly population. Methods: This is a cross-sectional, community-based, case-control study. The total study population was comprised of 4,944 subjects, 65 of whom had epilepsy which conformed to International League Against Epilepsy (ILAE) criteria. Vascular determinants that were evaluated included a history of stroke or myocardial infarction, peripheral vascular disease, hypertension, serum total cholesterol and left ventricular hypertrophy. Multivariate logistic regression analysis was used to calculate prevalence odds ratios (OR), adjusted for age and gender, as a measure of the strength of the associations. Results: A history of stroke was strongly associated with lifetime epilepsy (OR 3.3; 95% CI [Confidence Interval] 1.3–8.5), as well as with late-onset epilepsy (OR 3.1; 95% CI 0.9–10.6). All vascular determinants were associated with lifetime epilepsy and late-onset epilepsy, with odds ratios >1. When stroke patients were excluded, the odds ratios were statistically significant for the relationships between total cholesterol and late-onset epilepsy (OR 1.3, 95% CI 1.O–1.6) and left ventricular hypertrophy and late-onset epilepsy (OR 2.9, 95% CI 1.0–8.6). Furthermore, presence of any of these vascular indicators was twice as common among subjects with late–onset epilepsy as compared with subjects without epilepsy (OR 2.0, 95% CI 0.9–4.2), and this was statistically significant when stroke patients were excluded (OR 2.1, 95% CI 1.04.7). Conclusions: These results suggest that there may be a relationship between vascular factors and the risk of late–onset epilepsy, apart from the relationship that exists through clinically overt stroke.     

Epilepsy and mortality: a record linkage study in a U.K. population

PURPOSE: To examine patterns of mortality for a population with epilepsy compared with the nonepilepsy population. METHODS: The study used cross-sectional record linkage, combining an electronic death register with an epilepsy patient register constructed from a variety of routine health data sources collected from 1991 to 1997. The study was conducted in Cardiff and the Vale of Glamorgan, Wales, U.K., and included all deaths recorded between 1993 and 1996. RESULTS: There were 352 deaths for patients with epilepsy, 2.0% of all deaths. The crude mortality rates for patients with and without epilepsy were 36.2 and 9.9 per 1,000. The Standardised Mortality Ratio was 2.14 (95% CI, 1.74-2.55) for 1996 deaths. The single most common disease group was cancer, accounting for 66 (18.8%) of deaths for people with epilepsy (SMR, 1.47; 95% CI, 1.11-1.82). Significant excesses were demonstrated for cerebrovascular disease, diseases of the digestive system, respiratory diseases, and other causes of death. CONCLUSIONS: People with epilepsy have an increased mortality over the population as a whole. The main causes of death are those most common in the population as a whole and those that underlie the epilepsy itself.     

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.     

Patients' Understanding of and Adjustment to Epilepsy: Interim Findings from a European Survey

Summary: The purpose of the study was to discover how much European patients with epilepsy and their carers understand about epilepsy. This article reports the interim results for the first four European countries recruited to the study and includes data collected from 1,920 people with epilepsy and 2,136 carers. Clinical and demographic details and data on understanding of epilepsy were collected using self-completed questionnaires mailed to members of epilepsy support groups. There were no significant differences between people with epilepsy and carers for scores on the Epilepsy Knowledge Questionnaire, although people with epilepsy were more likely to score in the higher ranges. Higher scorers on the questionnaire were more likely to be better educated, to have lower scores on the impact of epilepsy scales, to have higher scores on the adjustment to epilepsy scale, and were less likely to report feeling stigmatized. The study confirms the findings of previous studies that people with epilepsy are reasonably well informed, although some gaps in their knowledge were evident. A comparison of country differences will be made and multivariate statistical analysis will allow a better understanding of the contribution of knowledge to people's overall adjustment to their condition.     

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.     

Psychosocial,Physical, and Autonomic Correlates of Depression in Korean Adults: Results from a County-Based Depression Screening Study

Objective

We aimed to investigate the prevalence and psychosocial and neurophysiological correlates of depression in a large county-based cohort of Korean adults.

Methods

We recruited 2355 adults from a rural county-based health promotion program. The following psychometric scales were used: the Center for Epidemiologic Studies Depression scale (CES-D) was used to assess depression, the General Health Questionnaire (GHQ) was used to evaluate stress, and the Medical Outcome Study Social Support Survey (MOS-SSS) was used to determine perceived social support. Heart rate variability (HRV) was used to assess neurophysiological properties. The psychosocial and neurophysiological variables of adults with depression (CES-D score ≥25) and without depression (CES-D score <25) were statistically compared. A logistic regression model was constructed to identify factors independently associated with depression.

Results

We estimated that 17.7% of the subjects had depression, which was associated with old age, being female, being single, less religious affiliation, high education, low body mass index (BMI), low levels of aerobic exercise, low social support, and a low HRV triangular index. The explanatory factors of depression included high education, less religious affiliation, low levels of current aerobic exercise, low BMI, and low social support.

Conclusion

Given the relatively high prevalence of overall depression, subsyndromal depression should also be regarded as an important issue in screening. The independent factors associated with depression suggest that practical psychosocial intervention, including brief psychotherapy, aerobic exercise, and other self-help methods should be considered. In addition, the HRV results suggest that further depression screening accompanied by neurophysiological features would require fine methodological modifications with proactive efforts to prevent depressive symptoms.     

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.     

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.     

Psychosocial predictors of the onset of anxiety disorders in women: Results from a prospective 3-year longitudinal study

In a prospective, longitudinal, population-based study of 643 women participating in the Harvard Study of Moods and Cycles we examined whether psychosocial variables predicted a new or recurrent onset of an anxiety disorder. Presence of anxiety disorders was assessed every 6 months over 3 years via structured clinical interviews. Among individuals who had a new episode of anxiety, we confirmed previous findings that history of anxiety, increased anxiety sensitivity (the fear of anxiety related sensations), and increased neuroticism were significant predictors. We also found trend level support for assertiveness as a predictor of anxiety onset. However, of these variables, only history of anxiety and anxiety sensitivity provided unique prediction. We did not find evidence for negative life events as a predictor of onset of anxiety either alone or in interaction with other variables in a diathesis–stress model. These findings from a prospective longitudinal study are discussed in relation to the potential role of such predictors in primary or relapse prevention efforts.     

Surgical Treatment of Extratemporal Epilepsy: Clinical, Radiologic, and Histopathologic Findings in 60 Patients

Summary: Purpose and Methods: The aim of this study was to analyze clinical, radiologic, and histopathologic findings in 60 consecutive patients with medically intractable extratemporal epilepsy who were operated on between November 1987 and May 1993.
Results: Histologically, there were distinct structural abnormalities in 50 (83%) of the surgical specimens. Signal abnormalities on magnetic resonance imaging (MRI) were present in all patients with neoplastic lesions (n = 17) and in 94% of patients with nonneoplastic focal lesions (n = 32). Overall, structural abnormalities were detected by MRI in 47 (96%) of 49 patients with focal lesions. During a mean follow-up of 4 years, 30 (54%) patients remained completely seizure free, 11 (20%) had ≤2 seizures per year, seven (12%) showed a seizure reduction of ≥75%, and eight (14%) had <75% reduction in seizure frequency. The fraction of seizure-free patients was 12 (80%) of 15 in patients with neoplastic lesions, 16 (52%) of 31 in patients with nonneoplastic focal lesions, and two (20%) of 10 for those without histopathologic abnormalities. The differences in seizure outcome between patients with and without focal lesions were statistically significant (p < 0.05), if seizure-free outcome was compared with persistent seizures.
Conclusions: Focal lesions and particularly neoplasms are associated with improved postoperative seizure control compared with patients without histopathologic abnormalities. We advise caution in considering surgery to treat extratemporal epilepsy in patients who have normal MRI scans, because the outcome with the approach described in this study is poor in such cases.     

Public Attitudes Toward Epilepsy in Italy: Results of a Survey and Comparison with U.S.A. and West German Data

In May 1983, the Italian Institute of Public Opinion DOXA ran, for the Italian League Against Epilepsy, a survey to evaluate public attitudes toward epilepsy in Italy. Eight questions were addressed to a sample of 1,043 adults. Twenty-seven percent did not know what epilepsy was. The least knowledge was observed among elderly people, in the southern regions and the islands, in villages more than in cities, and, in particular, among the poorest social classes. Sixty-one percent had known someone who had epilepsy, and 52% had seen someone having a seizure. When those familiar with epilepsy were asked if they would object to having their children in school or at play associate with persons with seizures, only 11% replied they would object. Seventy percent thought that persons with epilepsy should be employed in jobs like other people, and only 8% thought epilepsy to be a form of insanity. When those familiar with epilepsy were asked if epilepsy is a curable illness, one-third answered negatively, one-third answered affirmatively, and one-third had no personal opinion. The Italian data seem to fall within the standard of the American (1979) and West German (1978) surveys.     

The social causes of inequality in epilepsy and developing a rehabilitation strategy: A U.K.-based analysis

A rehabilitation approach has been adopted for many long-term neurologic conditions, but not for epilepsy. The disabilities associated with epilepsy are cognitive, psychological, and social, which are not as readily identified by medical doctors as are physical disabilities. A rehabilitation approach moves the emphasis from a medically driven process to a focus on the personal, social, and physical context of long-term illness. It is suggested that a missed opportunity for education and support for self-management occurs after diagnosis. This results in disadvantage to those whose educational level and knowledge of epilepsy are low. People who do not achieve epilepsy control may then experience higher levels of psychological distress, and a negative cycle of loss of self-efficacy, poor epilepsy control, social disadvantage, and disability. Rehabilitation services have benefited communities surrounding centers of excellence. Not so in epilepsy. Despite centers of excellence, areas with deprivation have higher than national average levels of patients reporting a seizure in the prior year, and higher emergency hospital admissions. Specialists working in partnership with general practitioners (GPs) and practice nurses can do more to increase participation and reduce distress for people with epilepsy. When available, GPs and nurses with special interest in epilepsy promote integrated services. Primary–secondary networks are likely to be more effective in preventing downward drift. This requires evaluation.