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.     

Dental status and oral health of patients with epilepsy: an epidemiologic study

PURPOSE: We performed a dental survey of epilepsy patients to examine their oral health by statistical means and to provide a guide for the dental treatment of these patients. METHODS: We first set up four "dental" subgroups of epilepsy patients, based on the types of seizures, seizure frequency, and mental state. One hundred one patients underwent a survey concerning their dental, medical, and epilepsy histories, followed by a dental examination. Indexes quantifying oral hygiene, the number and condition of the remaining teeth, periodontium, and the degree of prosthetic treatment were measured. An age-matched control group of general (nonepilepsy) population underwent an identical dental examination. Statistical comparison was performed between the patient and the control groups and between subgroups of epilepsy patients. RESULTS: In almost all aspects of oral health and dental status, patients with epilepsy showed a significantly worse condition compared with the control group. Comparison of the subgroups of epilepsy patients revealed that the most severe findings concern patients who have poorly controlled epilepsy, especially those who have frequent generalized tonic-clonic seizures. CONCLUSIONS: The observed difference probably results from a combination of factors such as the effect of the seizures themselves, socioeconomic conditions, and the negative attitude of dentists. We recommend that the planning of dental treatment of such patients should start with the assessment of their disease and determination of the "dental" subgroup to which they belong. For each subgroup, specific recommendations for interventions are given.     

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.     

Epilepsy in General Practice: The Dutch Situation

Treatment and supervision of epileptic patients is part of specialist medicine. A possible change in the role of specialists and general practitioners in the care of these patients was explored by a questionnaire mailed to all Dutch neurologists and a random sample of general practitioners. Patients were also asked their opinion. The real situation was studied in a group of patients retrieved from the registers of general practitioners. Demographic, psychosocial, and epilepsy characteristics were sampled. Specialists tend not to want a change in their role; general practitioners desire a change. At present, patients do not want a change, but in future a change might be acceptable to them. More patients than expected were supervised by their general practitioner only. Their demographic and psychosocial characteristics did not differ from those in the population at large. Epilepsy characteristics corresponded with those in other studies.     

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.     

Epilepsy Care in the World: results of an ILAE/IBE/WHO Global Campaign Against Epilepsy survey

PURPOSE: Information about existing resources available within the countries to tackle the huge medical, social, and economic burden caused by epilepsy is lacking. To fill this information gap, a survey of country resources available for epilepsy care was conducted within the framework of the ILAE/IBE/WHO Global Campaign Against Epilepsy. METHODS: The study represents a major collaborative effort involving the World Health Organization (WHO), the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE). RESULTS: Data were collected from 160 countries representing 97.5% of the world population. The information included availability, role, and involvement of professional and patient associations for epilepsy, epilepsy treatment and services including antiepileptic drugs, human resources involved in epilepsy care, teaching in epileptology, disability benefits, and problems encountered by people with epilepsy and health professionals involved in epilepsy care. The data confirm that epilepsy care is grossly inadequate compared with the needs in most countries. In addition, large inequities exist across regions and income groups of countries, with low-income countries having extremely meager resources. Complete results of this survey can be found in the Atlas: Epilepsy Care in the World. CONCLUSIONS: The data reinforce the need for urgent, substantial, and systematic action to enhance resources for epilepsy care, especially in low-income countries.     

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.     

Prognosis of Epilepsy: A Review and Further Analysis of the First Nine Years of the British National General Practice Study of Epilepsy, a Prospective Population-Based Study

Summary: Purpose: To understand the prognosis of newly diagnosed epilepsy to provide rational therapy and advice for patients and their physicians. Methods: The National General Practice Study of Epilepsy (NGPSE) is the first large population-based study that has assessed the prognosis of patients with newly diagnosed epilepsy prospectively over a prolonged period. We review the previously published data on the prognosis of epilepsy after 9 years of follow-up. One thousand ninety-one patients with newly diagnosed or suspected epilepsy who were attending 1 of 275 general practices throughout the United Kingdom between 1984 and 1987 were ascertained. Cases in this study were defined as the occurrence of one or more seizures, including provoked seizures. Prognosis in terms of remission of seizures, and mortality, was analyzed in the patients who were classified 6 months after recruitment as having definite epilepsy (n = 564) or possible/probable epilepsy (n = 228). Results: Only 33 patients were completely lost to follow-up. After 9 years, 86% [95% confidence interval (CI) 81, 901 of patients with definite epilepsy had achieved a remission of 3 years, and 68% (CI 61, 73, had achieved a remission of 5 years. For the complete cohort, with possible/probable epilepsy included, the rates increased to 87% (CI 83, 91) for 3-year remission and 71% (CI 65, 77) for 5–year remission. The proportion of patients with definite epilepsy who were still in remission at 9-year follow-up (terminal remission) was 68% (CI 62, 74) for 3-year remission and 54% (CI 48, 60) for 5-year remission. When stratified by etiology, the proportions achieving 5–year remission by 9 years was 69% (CI 60, 77) for idiopathic seizures, and 61% (CI 46, 75) for remote symptomatic epilepsy. Age and seizure type had small effects on the chances of achieving remission, with children experiencing slightly lower rates than older patients, and partial seizures having lower remission rates than generalized seizures. The overall standardized mortality ratio (SMR) for patients with definite or possible/probable epilepsy was 2.5 (CI 2.1, 2.9), and 3.0 (CI 2.5, 3.7) for patients who were classified as having definite epilepsy. The SMR for patients with idiopathic epilepsy was 1.6 (CI 1.0, 2.4), for those with remote symptomatic epilepsy it was 4.3 (CI 3.3, 5.3, and for those with acute symptomatic epilepsy it was 2.9 (CI 1.7, 4.5). Conclusions: Overall, most patients with epilepsy wiil enter remission; however, there is a higher than expected risk of death, especially in those with symptomatic epilepsy.     

Assessment of Quality of Life in People with Epilepsy: Some Practical Implications

Summary: Growing recognition of the need to assess the impact of epilepsy on psychosocial functioning has led to a number of initiatives to quantify quality of life (QOL) in patients with this condition. To understand the impact of epilepsy and its treatment, physical, social, neuropsychological, and psychological functioning aspects must be considered. It also is apparent from previous research work that measures of QOL should be comprehensive enough to address the question under consideration, but also simple and as brief as possible. A number of QOL measures for assessing the impact of epilepsy and its treatment exist, such as the Washington Psychosocial Seizure Inventory, the Social Effects Scale, the Epilepsy Surgery Inventory, the Quality of Life in Epilepsy (QOLIE) questionnaire, and the Liverpool QOL Battery. These measures have in most cases been shown to be reliable, valid, and sensitive to change, although at the current stage of development, some are better validated than others. It is generally agreed that the best approach is to use a standard generic instrument with disease-specific additions. Selection of a measure already in existence is recommended, as the process of producing a new measure is costly in terms of both resources and time. Some consideration also needs to be given to factors such as the process of administration (e.g., self-completion or administration at interview) or the timing of data collection. Then questions such as the cross-cultural applicability of QOL measures and the real relevance of the changes remain to be answered. It is hoped that, over the next few years, significant progress will be made in addressing these issues.     

Epilepsy and trimethylaminuria: A new case report and literature review

Trimethylaminuria is a metabolic disorder characterized by the excessive excretion of trimethylamine in bodily secretions, which confers a very unpleasant odour resembling that of dead fish. Literature reports only two cases affected by trimethylaminuria and epilepsy. We describe a third patient who, from the age of seven, was affected by temporal focal seizures with nocturnal episodes of nausea, vomiting, anxiety and autonomic activation followed by headache. EEG showed focal paroxysmal abnormalities prevailing on the right temporo-parieto-occipital regions. We began administering levetiracetam and seizures stopped. Our patient also showed learning disabilities despite a normal intelligence quotient (IQ), while another described patient had an IQ varying from borderline to mild mental retardation. We discuss the association between trimethylaminuria and epilepsy, and formulate some hypotheses on the relationship between trimethylamine convulsive effect and the anticonvulsive role of levetiracetam.     

Epilepsy and the inner city schools: a school-based program that makes a difference

A program was developed within the Baltimore City School System to comply with U.S. Public Laws 94-142 and 94-484. The program provided assessment, appropriate placement, counseling, work experience, and epilepsy education. Self-identified students were primarily black and poor, more likely to be either 1 year behind in reading or in special education. Seventy percent had psychosocial problems but for less than half were the problems directly related to seizures. The program decreased the nonpromotion rate and the dropout rate to less than half of that for the school system as a whole, and cut in half the percentage of youths who were unemployed or not in school or training 1 and 2 years after graduation. The per pupil cost was 10% greater than current expenditures for the system as a whole.     

Quality of Life of People with Epilepsy: A European Study

Summary: Purpose: To study the impact of epilepsy and its treatment on people with epilepsy in Europe. We therefore aimed to collect data from as many countries as possible.
Methods: Clinical and demographic details and information about psychosocial functioning was collected using self-completed questionnaires mailed to members of epilepsy support groups.
Results: Quality of life data was collected from >5,000 patients living in 15 countries in Europe. Over a third of all respondents had frequent seizures, and a fifth believed that their seizures were not well enough controlled by antiepileptic medication. Reported levels of side effects from medication were high. A significant number of respondents reported changing their medication because of side effects or poor control. Respondents reported that epilepsy and its treatment had a significant impact on a number of different aspects of their daily lives. Half of all respondents felt stigmatised by their epilepsy. There were significant differences by seizure type and frequency in the way respondents scored on measures of the perceived impact of their condition, the stigma associated with it and their health status as measured by a generic scale, the SF36.
Conclusions: This study confirms the findings of previous smaller-scale studies that reducing side effects and achieving better control of seizures are key to improving the quality of life of people with epilepsy, as is reducing the stigma and handicap associated with it.     

A natural history study of medical cannabis consumption in pediatric autism in the United States

BackgroundAutism spectrum disorder is specifically approved for medical cannabis consumption in 20 U.S. states, the District of Columbia, and the Territory of Puerto Rico. Despite increased access, there is limited knowledge about who consumes medical cannabis, what they consume, and perceived effectiveness. We addressed these gaps by conducting a natural history study of medical cannabis consumption.MethodChildren and their families engaged with a large pediatric care system were recruited to complete a telephonic study regarding their medical cannabis consumption. All children had to be consuming approved medical cannabis products issued from a state that had legalized medical cannabis for the treatment of ASD or related behaviors (irritability, hyperactivity, anxiety) (N = 89).ResultsThe sample’s ‘level of support’ and gender-ratio reflected the general autism population (~33 % requiring ‘Very Substantial Support’ and ~80 % male). The most common treatment targets were ASD behaviors (repetitive behaviors) and irritability. More children consumed compounds with high cannabidiol (CBD) and low or no tetrahydrocannabinol (THC). While dose did not affect overall perceived effectiveness, compounds with high-levels of CBD and low-levels of THC (CBD-dominant) were perceived as more effective than CBD-only.ConclusionsThis “real world” study revealed that medical cannabis is being used to treat a wide range of behaviors. Our study also suggests that children consume CBD-rich products, and the effectiveness of CBD-dosing may be tied to the inclusion of THC in the compound. Future research should evaluate optimal dosing with a particular focus on the CBD-to-THC ratio.     

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.     

Epilepsy care in Zambia: a study of traditional healers

PURPOSE: Most people with epilepsy (PWE) reside in developing countries with limited access to medical care. In sub-Saharan Africa (SSA), traditional healers (THs) play a prominent role in caring for PWE, yet little is known about epilepsy care by THs. We conducted a multimethod, qualitative study to better understand the epilepsy care delivered by THs in Zambia. METHODS: We conducted focus-group discussions with THs, in-depth semistructured interviews with a well-recognized TH at his place of work, and multiple informal interviews with healthcare providers in rural Zambia. RESULTS: THs recognize the same symptoms that a neurologist elicits to characterize seizure onset (e.g., olfactory hallucinations, jacksonian march, automatisms). Although THs acknowledge a familial propensity for some seizures and endorse causes of symptomatic epilepsy, they believe witchcraft plays a central, provocative role in most seizures. Treatment is initiated after the first seizure and usually incorporates certain plant and animal products. Patients who do not experience further seizures are considered cured. Those who do not respond to therapy may be referred to other healers. Signs of concomitant systemic illness are the most common reason for referral to a hospital. As a consequence of this work, our local Epilepsy Care Team has developed a more collaborative relationship with THs in the region. CONCLUSIONS: THs obtain detailed event histories, are treatment focused, and may refer patients who have refractory seizures to therapy to other healers. Under some circumstances, they recognize a role for modern health care and refer patients to the hospital. Given their predominance as care providers for PWE, further understanding of their approach to care is important. Collaborative relationships between physicians and THs are needed if we hope to bridge the treatment gap in SSA.     

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 principal component structure of the general health questionnaire among Greek and Turkish adolescents

Summary The 28-item version of the General Health Questionnaire was administered to Greek and Turkish school pupils in their mother country as well as to Greeks in Munich. Principal component analysis with varimax rotation was carried out separately for both the individual populations and sexes separately. Visual inspection of the matrices suggested overall agreement with the sub-scales obtained by Goldberg and Hillier (1979). The coefficient of factor similarity, calculated between matrices, suggested a highly similar principal component structure between the population samples as a whole and separately for the sexes living in their own country, but not between male and female Greek pupils in Germany. Highly similar component matrices were obtained for Greek males living in Greece with those in Germany, but not for females.Dedicated to Prof. Dr. Dr. Heinz Häfner on the occasion of his 60th birthday.     

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.