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Development of the quality of life in epilepsy inventory.

We developed an instrument to measure health-related quality of life (HRQOL) in epilepsy. A 99-item inventory was constructed from the RAND 36-Item Health Survey (generic core), with 9 additional generic items, 48 epilepsy-targeted items, and 6 other items concerning attitudes toward epilepsy and self-esteem. We administered the 99-item inventory to 304 adults with epilepsy at 25 epilepsy centers. Patients and patient-designated proxies completed the inventory and were retested 1-91 days later. A multitrait scaling analysis of these data led to retention of 86 items distributed in 17 multiitem scales (Cronbach's alpha ranged from 0.78 to 0.92). Factor analysis of the 17 multiitem scales yielded four underlying dimensions of health: an epilepsy-targeted dimension, a cognitive factor, mental health, and physical health. Construct validity was supported by significant patient-proxy correlations for all scales and correlations between neuropsychologic tests and self-reported emotional and cognitive function (all p values < 0.05). There were significant negative correlations between the four factor scores derived from the HRQOL scales and neurotoxicity, systemic toxicity, and health care utilization (except for the correlation between mental health factor and health care utilization; all p values < 0.05). Patients who were seizure-free in the preceding year reported better HRQOL for the overall score, three of the four factor scores, and 8 of the 17 scale scores than did patients with a high frequency of seizures. Relative validity analysis showed that the epilepsy-targeted factor and three of its four component scales were more sensitive to categorization of patients by severity of seizure frequency and type than scales tapping physical health, mental health, or cognitive function. These cross-sectional data support the reliability and validity of this measure of HRQOL in epilepsy. The addition of an epilepsy-targeted supplement to the generic core improved the sensitivity to severity of epilepsy. The 86 items included in the field testing were supplemented by three additional items to form the Quality of Life in Epilepsy (QOLIE-89) inventory.

Adolescent↗

Survey of public awareness, understanding, and attitudes toward epilepsy in Taiwan.

A survey of public awareness and understanding of and attitudes toward epilepsy was made in Taipei City and Chin-San Village, Taiwan in 1992. In a population sample of 2,610 adults, 87% had read or heard about epilepsy, 70% knew someone who had epilepsy, 56% had seen someone having a seizure, 18% would object to having their children associated with persons with epilepsy, 72% would object to having their children marry a person with epilepsy, 31% believed that epileptic persons should not be employed in jobs as other persons are, 7% believed that epilepsy was a form of insanity, 34% did not know the cause of epilepsy, 13% did not know what an epileptic attack was like, and 18% did not know what to recommend if their friends or relatives had epilepsy. Youth, higher education, and upper levels of employment were correlated with answers that were more favorable concerning epilepsy in all survey questions except for the question regarding marriage, for which the reverse was noted. The attitudes toward epilepsy disclosed by this study were more favorable than those detected in a similar survey conducted in Henan Province, China. The comparison suggests that the exposure to Western culture and socioeconomic system in Taiwan might have helped reduce the discrimination against epilepsy.

Age Factors↗

Pediatric epilepsy syndromes: an update and critical review.

Epilepsy syndromes occupy an important position in the current nosology of the epilepsies, describing and classifying seizure disorders with shared clinical and EEG features. Increasingly, this schema is being refined as new information becomes available and our understanding of etiology and presentation of each syndrome widens. Advances in neuroimaging and neurogenetics have been particularly important and are likely to fundamentally change our concepts of syndrome classification. At present, the International League Against Epilepsy classification of epilepsy syndromes according to presumed localization (partial, generalized, undetermined) and etiology (idiopathic, cryptogenic, symptomatic). In clinical practice, it is often useful to conceptualize epilepsy syndromes according to their usual age at presentation, which greatly facilitates syndrome identification in new patients and recognizes the age-related expression of many childhood epilepsies. Definitional problems exist for many pediatric epilepsy syndromes, particularly the epileptic encephalopathies of early infancy, the benign epilepsies of infancy and childhood, the myoclonic epilepsies of infancy and early childhood, and the idiopathic generalized epilepsies of childhood and adolescence. It is likely that further input from the fields of molecular genetics and neuroimaging will enable the classification of epilepsies to become more etiologically oriented and disease specific.

Adolescent↗

Quantitative MRI in outpatient childhood epilepsy.

PURPOSE: In adult studies, MRI volumetrics is a proven technique in presurgical assessment of epilepsy. Hippocampal volume loss is maximal in the syndrome of mesial temporal lobe epilepsy. We aimed (a) to validate this methodology in a pediatric outpatient epilepsy population (b) to determine the relationship of hippocampal asymmetry (HA) to epileptic syndromes and risk factors. METHODS: Two neurologists classified the epileptic syndrome in 79 pediatric outpatients, according to the International Classification of Epilepsies and Epileptic Syndromes (ILAE). Hippocampal volumetrics were performed in all patients. HA was defined according to adult control values. RESULTS: Inter-rater variability on measurement of HA was very small (Correlation of test retest of 0.97 on 17 children <3 years old). The rate of HA was 44/79 (57%). In 21 patients, (27%) potentially epileptogenic lesions (other than HA) were identified (cerebral dysgenesis n = 11). HA was present in 9/15 (60%) of temporal lobe epilepsy and in 15/28 (54%) extratemporal onset epilepsy and 5/11 (46%) of generalized symptomatic epilepsy. Analysis confined to <13 years also showed HA was not specific for epileptic syndrome. There was no significant association of febrile convulsions (13%) with HA or temporal lobe epilepsy. CONCLUSIONS: There is a high incidence of HA in childhood epilepsy. HA was not confined to clinically defined temporal lobe epilepsy. The poor correlation of epileptic syndrome to quantitative MRI findings may be due to the inadequacies of epilepsy classification in the younger child, with the clinical semiology providing misleading localizing information. Normative childhood data for hippocampal volumes and symmetry is needed.

Adolescent↗

Interictal cardiovascular autonomic responses in patients with epilepsy.

PURPOSE: To evaluate the interictal autonomic nervous system function in 84 patients with epilepsy: 37 with newly diagnosed, previously untreated epilepsy, and 47 patients receiving long-term carbamazepine (CBZ), phenytoin (PHT), or valproate (VPA) monotherapy, or CBZ plus PHT, or CBZ plus VPA for their seizure disorder. METHODS: We assessed autonomic control of the cardiovascular regulatory system by standardized cardiovascular reflex tests measuring changes in heart rate (HR) and blood pressure (BP) at rest and after certain stimuli. RESULTS: The HR and BP responses were similar to those of control subjects in patients with newly diagnosed epilepsy. However, HR variation during normal breathing and maximum systolic BP increase in isometric work were diminished in patients, who had been treated with antiepileptic drugs (AEDs) for epilepsy for a long time. Diminished HR responses to the Valsalva maneuver were noted in patients receiving CBZ as monotherapy and during deep breathing in patients receiving CBZ combined with PHT or VPA. Furthermore, patients receiving CBZ had diminished BP responses in isometric work. When analyzed in relation to epilepsy type, suppressed HR responses in normal breathing were associated with primary generalized epilepsy (PGE), whereas diminished BP responses in isometric work were associated with partial epilepsy. Two patients with recently diagnosed partial epilepsy and 1 patient receiving long-term CBZ monotherapy for partial epilepsy had two abnormal cardiovascular response test results. CONCLUSIONS: Our results show that cardiovascular responses mediated by both the parasympathetic and sympathetic nervous system are diminished in patients with epilepsy. However, the changes appear to be clinically significant in only a few of them and appear to be associated with CBZ medication. Further studies are needed to detect the underlying complex interactions and clinical significance of autonomic nervous system dysfunction in patients with epilepsy.

Adolescent↗

Morbus sacer in Africa: some religious aspects of epilepsy in traditional cultures.

Epilepsy when manifested as grand mal seizure provokes strong and ambivalent feelings in those witnessing it. Terms such as morbus sacer, denoting both a sacred and demoniac condition, or folk names indicating divine punishment, have expressed these feelings in European societies from antiquity to the Middle Ages and beyond. An atmosphere of fear, shame and mysticism surrounds epilepsy even in our days in many non-Western and also in Western cultures. In the course of work and studies in Tanzania, where I organized the Mahenge Clinic for Epilepsy in 1960, and in other parts of Africa, I found that epilepsy is conceived of as an "African'' affliction, a manifestation of supernatural forces that makes it difficult to reach epilepsy sufferers with modern medical treatment. Epilepsy is traditionally looked on as caused by ancestral spirits or attributed to possession by evil spirits. It is also thought to be due to witchcraft, and "poisoning," and often taken to be contagious. Epilepsy may, under Christian missionary teaching, have come to be considered as due to demoniac possession or divine punishment for sins, in accordance with biblical examples. In many parts of Africa, syncretic amalgamation of indigenous traditions with Judeo-Christian doctrines influenced popular attitudes toward epilepsy. We demonstrated that persistent efforts at health education in the context of organized treatment of epilepsy can result in a change of popular notions about epilepsy and consequently lead to significant improvement in the quality of life of epilepsy sufferers.

Africa↗

Risk of epilepsy in patients with multiple sclerosis: a population-based study in Iceland.

PURPOSE: Several clinical series reported an association between multiple sclerosis (MS) and epilepsy. We conducted a total population study in Iceland to determine the risk for developing epilepsy in patients with MS compared with that expected in the general population. METHODS: Medical records of the 188 incidence cases of clinically definite MS first diagnosed in Iceland during the 25-year study period (1965-1989) were reviewed. The cases were followed up through 1994 or until death to identify those developing seizures or epilepsy. The expected number of cases with epilepsy in the MS-incidence cohort were calculated based on the age-specific incidence for epilepsy in Iceland and the age-specific person years of follow-up in the MS cohort. RESULTS: During the 2,771 person years of observation after diagnosis of clinically definite MS, three MS patients developed epilepsy. One additional case developed epilepsy after onset of MS symptoms but before diagnosis of MS. The cumulative incidence of epilepsy by 10 years after diagnosis of MS was 1.9%. Given the age-specific person years of follow-up after diagnosis of MS, only one case of epilepsy would have been expected; standardized incidence ratio (SIR), 3.0 (95% confidence interval (CI), 0.6-8.8). CONCLUSIONS: MS is a risk factor for developing epilepsy. Patients with MS have a threefold increase in risk for developing epilepsy when compared with that expected in the general population. The reason for this increased risk is unclear and needs further investigation.

Adult↗

Patients' understanding of and adjustment to epilepsy: interim findings from a European survey.

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.

Adaptation, Psychological↗

Parent- and patient-validated content for pediatric epilepsy quality-of-life assessment.

PURPOSE: The purpose of this study was to assess the parent-and patient-validated content of quality-of-life measurement for use in children with epilepsy. METHODS: We asked the parents of 80 consecutive children and adolescents with epilepsy to list in order of importance their concerns about living with or caring for their children with epilepsy. Patients were 3 months to 18 years of age (mean, 10 years) and identified at the outpatient clinic or during hospital stay. To minimize investigator bias, parents and children listed their concerns in a private setting without staff involvement. RESULTS: Twenty-six distinct domains were generated by the parents and children. Concerns listed by more than 20 of parents included medication adverse effects (58), cognitive effects of epilepsy (46), prospects for the future (41), safety (35), independence (31), and brain damage caused by seizures (30). Concerns ranked by parents as most important included safety (18), brain damage from seizures (12), enigma of epilepsy (12), cognitive effects of epilepsy (11), and prospects for the future (10). Concerns listed by more than 20 of children included social problems (35), cognitive effects of epilepsy (29), driving (29), sports (27), medication adverse effects (25), and schooling (21). Concerns ranked by children as most important included issues related to medication adverse effects (13), cognitive effects of epilepsy (10), hatred of epilepsy (8), social embarrassment (6), fear of seizures (6), injury (6), and dislike of hospital visits (6). CONCLUSION: The effect of epilepsy on health-related quality of life in pediatric patients is defined by a limited number of domains. A 20-item inventory was chosen from the 26 domains generated by the parents and children. Our study provides insight into parents' and children's perception of seizures and the impact of epilepsy on everyday life.

Adolescent↗

Negative emotions in children with newly diagnosed epilepsy.

PURPOSE: To understand the emotional predicament in children with recently diagnosed idiopathic or cryptogenic epilepsy. METHODS: We used the well-tried method of structured projection for the first time in children with epilepsy. Thirty-six children with epilepsy, aged 7-15 years (mean age, 9.5 years) and in 35 control children aged 7-15 years (mean age, 9.4 years), attributed shame and guilt in relation to three types of situation (non-illness related, illness related, and epilepsy related). Children were evaluated twice: shortly after diagnosis, before antiepileptic drug (AED) use and after an interval of 3 months. RESULTS: Children with epilepsy and healthy controls were similar in their way of attributing shame and guilt. However, the type of situation was of influence: Both children with epilepsy and healthy children attributed more shame to incompetence due to epilepsy than to incompetence due to other illnesses. CONCLUSIONS: Increased affective problems in childhood epilepsy cannot be explained by excessive attribution of shame and guilt, affects known to be important precursors of psychopathology, yet both healthy children and children with epilepsy attribute more shame to epilepsy than to other illnesses. Epilepsy is not like any other disease.

Adolescent↗

An assessment of epilepsy patients' knowledge of their disorder.

PURPOSE: Patient education is an effective component of comprehensive care. Studies assessing patient's knowledge of their epilepsy are scarce. We report the first objective study evaluating knowledge of epilepsy patients referred to an American tertiary care center. METHODS: Two hundred twenty epilepsy patients referred to an epilepsy center completed a knowledge questionnaire. The questionnaire included topics related to safety, compliance, and legal issues of driving and employment. Questionnaire scores were correlated with demographics, number of years with epilepsy, and educational background. RESULTS: Of 220 patients, 175 were included in study analysis. Thirteen percent (n = 28) were excluded because of the diagnosis of nonepileptic seizures, and 8% (n = 17) were excluded because of having a diagnosis other than epilepsy. The average age and number of years with epilepsy was 34.7 +/- 13 and 14. 4 +/- 13.1, respectively. Neither age (r = 0.20, p </=0.01), number of years with epilepsy (r = 0.09, p = 0.2), nor years of education (r = 0.34, p </=0.01) correlated with questionnaire scores. Thirty percent believed that epilepsy is a mental disorder or contagious. Forty-one percent believed it is appropriate to place an object in a patient's mouth during a seizure to prevent injury. Two of the lowest scores, 13.6% and 47.5%, pertained to the legal issues of driving and employment, respectively. CONCLUSIONS: Patients with epilepsy are not knowledgeable about their disorder. This is true regardless of age, educational background, or number of years with epilepsy. There is a need for educational intervention in this population, particularly related to injury prevention and the legalities of driving and employment.

Adult↗

Prevalence, classification, and severity of epilepsy in children in western Norway.

PURPOSE: To determine prevalence of active epilepsy in school children in a defined area and assess the usefulness of International League Against Epilepsy classification of seizures and epileptic syndromes, with special emphasis on frequency, additional handicaps, and therapeutic problems of severe cases. METHODS: The latest International League Against Epilepsy International Classification of Epileptic Seizures (ICES, 1981) and Epilepsies and Epileptic Syndromes (ICE, 1989) were used for determination of prevalence rates, seizure types, epilepsies and epileptic syndromes, and additional neurological deficits in all 6-to 12-year-old children with epilepsy in a Norwegian county. Children had neuropediatric and EEG examination, intelligence evaluation, and, when necessary, additional investigations. RESULTS: Prevalence of active epilepsy on January 1, 1995, was 5.1 per 1,000. Main seizure type and epilepsy syndrome could be classified in 98% and 90% of patients, respectively. Seizure types/epileptic syndromes were more often partial/localization related than generalized. Among generalized epilepsies, idiopathic forms were more frequent in girls, and cryptogenic and symptomatic forms more frequent in boys. Epileptogenic EEG activity was most often generalized or localized to one or two areas of the brain and was never found in 14% of patients. Symptomatic etiology was found in 46% of all children and in 81% of therapy-resistant cases, respectively. Over the years, 11% of children had never used antiepileptic drugs (AED), 62% had tried one or two AEDs, and 26% had tried from three to 15 AEDs. Twenty-five percent of children were without present AED treatment. Complementary/alternative medicine had been tried by 12% of children. CONCLUSIONS: Although most epilepsies could be classified, the number of cases in non-specific categories was relatively high. Symptomatic etiology was frequent, especially in therapy-resistant cases. Multidisciplinary therapeutic and habilitation approaches are often needed in childhood epilepsy.

Child↗

Comparison of the epilepsy surgery programs in Cartagena, Colombia, and Zürich, Switzerland.

The organization, financing, productivity, quality of work, and cost-effectiveness of the Epilepsy Center in Cartagena, Colombia, were studied and compared with the epilepsy surgery program at the University Hospital Zürich, Switzerland. During a 2-month visit, one of the authors (I.T.) evaluated the center in Cartagena as a welfare institution and evaluated its epilepsy surgery program. The postoperative results of the Cartagena program were compared with those reported at the Second International Palm Desert Conference 1992, which revealed a similar rate of postoperative seizure control in temporal lobe epilepsy, slightly inferior results with hemispherectomy, and slightly better results with anterior callosotomy. A comparison between the two epilepsy centers showed that pre and postoperative antiepileptic drug treatment is more restricted in Colombia because of high costs. Although important diagnostic tools such as electroencephalography, seizure monitoring, neuropsychology, computed tomography, and magnetic resonance imaging are available in both centers, the Zürich program also has access to positron emission tomography, single photon emission computed tomography, magnetic resonance spectroscopy, and intracarotid and selective amobarbital tests. The postoperative seizure outcome is similar in surgical temporal lobe epilepsy patients (temporal lobectomy series, Cartagena; selective amygdalohippocampectomy series, Zürich). The comparison of direct costs of epilepsy surgery in Cartagena and Zürich showed that for the average patient undergoing epilepsy surgery in Cartagena, the cost is 5.5% of that in Zürich. This study presents evidence that epilepsy surgery is an inexpensive and efficient treatment option for epilepsy patients in developing countries. Epilepsy surgery in developing countries may even be considered at an early stage in patients who cannot afford the costs of lifetime medical treatment but can afford the one-time cost of a surgical treatment.

Anticonvulsants↗

New insights into the clinical management of partial epilepsies.

The diagnosis, treatment, and prognosis of seizure disorders depend on the correct identification of epileptic syndromes. Partial epilepsies are heterogeneous and can be divided into idiopathic, cryptogenic, and symptomatic epilepsies. The most common of the idiopathic localization-related epilepsies is benign epilepsy with rolandic or centrotemporal spikes (BECTS). Seizures remain rare and the use of antiepileptic drug (AED) treatment in all patients does not appear justified. Children who present with some of the electroclinical characteristics of BECTS may also display severe unusual neurologic, neuropsychological, or atypical symptoms. In some cases, carbamazepine has been implicated as a triggering factor. Primary reading epilepsy and idiopathic occipital lobe epilepsies with photosensitivity are examples of an overlap between idiopathic localization-related and generalized epilepsies and respond well to sodium valproate. Autosomal dominant nocturnal frontal lobe epilepsy and benign familial infantile convulsions are recently described syndromes, differing in several ways from classical idiopathic localization-related epileptic syndromes. In cryptogenic or symptomatic epilepsy, the topography of the epileptogenic zone might influence drug efficacy. An individualized approach to AED selection, tailored to each patient's needs, should be used. Resistance of seizures to antiepileptic therapy may be due to diagnostic and/or treatment error or may be the result of noncompliance. Increasing the dosage, discontinuation or replacement of a drug, or addition of a second drug is indicated in truly resistant cases. The use of more than two AEDs rarely optimizes seizure control, and in some cases reduction of treatment may improve seizure control while lessening side effects. EEG-video assessment of patients with refractory epilepsy is important. Indications for and timing of epilepsy surgery should be reconsidered. Surgical therapy should probably be used more often and earlier than it is at present.

Anticonvulsants↗

Survey of public awareness, understanding, and attitudes toward epilepsy in Henan province, China.

The awareness, understanding, and attitudes toward epilepsy in 1,278 men and women were surveyed in Henan, China in 1988. Results showed that 93% had read or heard about epilepsy; 77% knew someone who had epilepsy; 72% had seen someone who was having a seizure; 57% would object to having their children associate with persons with epilepsy in school or at play; 87% would object to having their children marry a person with epilepsy; 53% believed that epileptic persons should not be employed in jobs as other persons are; 16% believed that epilepsy was a form of insanity; 40% did not know the cause of epilepsy; 10% did not know what an epileptic attack was like; and 17% did not know what to recommend if their friends or relatives had epilepsy. The relationship between the responses and the respondents' age, sex, marital status, number of offspring, level of education, occupation, and residence was analyzed. Education reduced the respondent's prejudice against play and employment, but did not change their objection to marriage and appeared to have reinforced their linking epilepsy with insanity. As compared with the surveys conducted in Western countries, our survey showed that awareness of epilepsy in China was greater, if not the same, but the attitudes toward epilepsy were much more negative.

Adolescent↗

Methodologic issues in studies of mortality following epilepsy: measures, types of studies, sources of cases, cohort effects, and competing risks.

This paper addresses methodologic issues in studies of mortality, and the impact of these issues in studies of mortality in epilepsy. One important issue is to identify the question: Is it whether epilepsy increases the risk of dying? Or is it whether the underlying condition that led to epilepsy, itself associated with an increased risk for death, is the cause of increased mortality observed in epilepsy? Each measure for estimating mortality requires specific study designs. The mortality rate, case fatality, standardized mortality ratio (SMR) are calculated in prospective or retrospective cohort studies of death in epilepsy. Because the SMR is obtained by indirect standardization, it uses the age- and gender-distribution of the study group with epilepsy, which differs across studies. Thus, the SMR is impossible to compare across studies. The proportionate mortality ratio considers only the proportion of deaths that are due to epilepsy and is useful when denominators are unavailable, often the case in the developing world. Mortality studies in prevalent cohorts of people with epilepsy are compared to those in incident cohorts of epilepsy. The impact of different sources of cases on mortality in epilepsy is discussed. Finally, cohort effects and competing risks are examined. We conclude that the gold standard for studies on mortality should be a population-based cohort of incident cases. Only this type of cohort permits a complete collection of data and the observation of the clinical phase of the disease from the diagnosis of epilepsy to the outcome of the study, death.

Age Distribution↗

Socioeconomic status is a risk factor for epilepsy in Icelandic adults but not in children.

PURPOSE: Two earlier population-based studies provide conflicting information on the association between low socioeconomic status (SES) and risk for epilepsy. Seizure etiologies (e.g., head injury, stroke) associated with low SES were not addressed in prior analyses. We assess the relation between SES indices and incident epilepsy separately for children and adults and in subgroups defined by seizure etiology. METHODS: In this population-based case-control study, a surveillance system identified incident unprovoked seizure or first diagnosis of epilepsy throughout Iceland (n = 418). Controls were selected from the population registry as the next two same-sex births alive, residing in Iceland at the time of the index seizure, and without a history of unprovoked seizure on the date of the case's incident seizure (n = 835). The odds ratio measured the association between SES and epilepsy. RESULTS: An association was found between epilepsy and SES among adults, but not among children. Among adults, low education was associated with an increased risk for epilepsy [odds ratio (OR), 2.29; 95% confidence interval (CI), 1.21-4.34), and home ownership was protective (OR, 0.63; 95% CI, 0.43-0.92). When analyses were repeated by seizure etiology, this association remained only in the group with epilepsy of unknown cause, even after adjusting for alcohol consumption. CONCLUSIONS: Low SES, indexed by low education or lack of home ownership, is a risk factor for epilepsy in adults, but not in children, suggesting a cumulative effect of SES on risk for epilepsy. This association is not explained by established risk factors for epilepsy (e.g., head injury, stroke). We find no evidence of a downward social drift among cases whose parents had epilepsy.

Adolescent↗

Epilepsy in young adults with autism: a prospective population-based follow-up study of 120 individuals diagnosed in childhood.

PURPOSE: Little is known about the long-term outcome of epilepsy in autism and the epilepsy characteristics of adults with autism. This prospective population-based study was conducted in an attempt to point out differences on a group basis between adults with autism with or without epilepsy, and to describe the occurrence, the seizure characteristics, and the outcome of epilepsy in autism. METHODS: One hundred eight of 120 individuals with autism diagnosed in childhood and followed up prospectively for a period of 13-22 years were reevaluated at ages 17-40 years. As adults, the majority had mental retardation and autistic disorder or autistic-like condition. Interviews were performed with the caretakers of 42 of 43 individuals with a history of epilepsy, and their medical records were reviewed. RESULTS: Adults with autism and mental retardation constituted a severely disabled group. On a group basis, both the cognitive level and the adaptive behavior level were lower in the epilepsy group than in the nonepilepsy group (p<0.05). In all, 38% had epilepsy. One third had epilepsy onset before age 2 years. Remission of epilepsy was seen in 16%. Partial seizures with or without secondarily generalized seizures were the dominating seizure type. CONCLUSIONS: In a community sample of individuals with autism followed up from childhood through to adult age, one of three had epilepsy since childhood/adolescence. Severe mental retardation and autism are significantly associated with epilepsy, especially in female patients. Seizure frequency has a great impact on the individuals' lives. Specialist medical care is needed in this severely communication-disabled population.

Adaptation, Psychological↗