Estimated cost of inpatient admissions and outpatient appointments for a population with epilepsy: a record linkage study

Purpose: This study describes the hospital costs for a population with epilepsy in 1 year (1999). The study was conducted in a defined geographic United Kingdom population of 424,000. METHODS: A register of patients with epilepsy was constructed by using a variety of data sources that had undergone a process of record linkage. Hospital admissions were coded by using Healthcare Resource Group (HRG) and costed by using published National Health Service reference costs. A population of 3,892 people with epilepsy was recorded. RESULTS: The cost of inpatient care for these patients with epilepsy was pound 2,537,386 ($4,135,939), an excess of pound 1,598,909 ($2,606,222) compared with the population as a whole. Of this, pound 320,182 ($521,897) was associated with a primary diagnosis of epilepsy, and pound 679,757 ($1,108,004) was associated with secondary diagnoses. Outpatient expenditure was pound 732,823 ($1,194,501). CONCLUSIONS: This study demonstrates that people with epilepsy use excess resources and that this is not explained solely by either the direct or indirect effects of their epilepsy. These data may help in understanding of the complex issues surrounding the health economics of epilepsy.     

Stroke and mental health care: a record linkage study

Background Stroke is associated with psychiatric morbidity but little is known about mental health care use in stroke patients. Method A probability record linkage study was conducted linking stroke cases admitted to a teaching hospital serving a catchment area between 1987 and 1995 with records from a psychiatric case register covering the same area. Results Stroke patients had a more than twofold increased risk of contact with mental health care than individuals in the general population (yearly prevalences of respectively 88 and 39 per 1000; risk ratio 2.24; 95 % CI 2.04–2.45). One-third of all stroke admissions had had mental health care before and more than half had had mental health care after the stroke. In the year of admission for stroke, the probability of receiving mental health care was highest, while in the more remote years the risk was lower. Conclusion Stroke is associated with an increased probability of contact with mental health services. The pattern of mental health care of a stroke patient is different from that of other mental health patients: more episodic and concentrated around the time of admission for stroke. Accepted: 19 September 2001     

Cause-Specific Mortality in Epilepsy

Summary:  Epilepsy is associated with a two- to three-fold increase in mortality. Studies of cause-specific mortality show that deaths may be classified into those that are directly or indirectly related to epilepsy, those that are related to the underlying pathology giving rise to epilepsy, and those that are unrelated to both epilepsy and its causes. Overall, direct epilepsy related deaths are infrequent. Pneumonia, especially in the elderly, central nervous system (CNS) and non-CNS neoplasias, and cerebrovascular disease are frequent causes of death. Suicides, accidental deaths, and ischemic heart disease do not appear to be significant contributors to mortality in community-based studies. In hospital/institution-based analyses, epilepsy-related deaths are common and sudden unexpected death in epilepsy (SUDEP) may account for up to 17% of all deaths in epilepsy. A small proportion of these deaths may be witnessed and most such witnessed deaths occur in relation to convulsive seizures. The exact pathogenetic mechanisms are unknown although it is very probable that lack of seizure control is an important risk factor. Patients who continue to suffer seizures appear to have an almost 40 times higher risk of mortality than those in remission.     

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.     

Increasing rates of suicide in Western Australian psychiatric patients: a record linkage study.

OBJECTIVE: To investigate the risk of suicide following contact with mental health services and whether it has changed over time. METHOD: Record linkage was used to obtain the records of previous hospital admissions and mental health service contacts for deaths due to suicide in the period 1980-98. Standardized incidence rates were calculated for the general population and for users of mental health services. Proportional hazards regression was used to assess risk factors within the cohort of people with mental health service contact. RESULTS: Suicide risk was significantly increased in users of mental health services (rate ratio 6.66 in males and 7.52 in females). Suicide risk was highest in the first 7 days after discharge from in-patient care, and decreased exponentially with time since discharge. Suicide risk in users of mental health services has increased over the study period. CONCLUSION: These results highlight the importance of adequate follow-up of patients discharged from in-patient services, and the need for adequate resources for community-based services.     

Sudden Death in Epilepsy: A Study of Incidence in a Young Cohort with Epilepsy and Learning Difficulty

Summary: Sudden death, often seizure related, may occur in patients with epilepsy. Population-based incidence is probably on the order of 1:1,000/year. The incidence is much higher in selected groups, however. We wished to establish the incidence of sudden unexpected death (SUD) in a young cohort with severe epilepsy and learning difficulties. The study cohort included 310 pupils with epilepsy enrolled at a special residential school between April 1970 and April 1993. The follow-up period totaling 4,135 person-years included a period of residence at the school as well as time after leaving. Age and sex standardized overall mortality ratio was 15.9 [95% confidence interval (CI) 10.6–23.0], with 20 of 28 deaths considered epilepsy related. An incidence of sudden death cases of 1:295/year was noted. All 14 sudden deaths occurred when the pupils were not under the close supervision of the school and most were unwitnessed, which has implications for prevention.     

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.     

Natural history and mortality of chronic epilepsy in an untreated population of rural Bolivia: A follow-up after 10 years

Purpose:   To evaluate the natural history and mortality of chronic epilepsy in an untreated prevalence cohort of people with epilepsy (PWE) in a rural area of Bolivia.
Methods:   During 1994–1996 we carried out an epidemiologic survey in a sample of 9,995 subjects in the Cordillera province. At the end of the survey we identified 130 PWE, of whom 118 were classified as having "active epilepsy." We revisited this cohort 10 years after the prevalence survey.
Results:   We were able to trace 103 (87.3%) of the 118 PWE previously identified. Ten of the 103 subjects died during the follow-up period. Of the 93 PWE still alive, adequate information on the occurrence of seizures was available for 71 subjects, of whom 31 (43.7%) were seizure-free for more than 5 years; only 3 of these 31 subjects have taken an antiepileptic drug (AED) for more than 1 year. Generalized seizures were associated with a better prognosis. Mortality rate in our prevalent cohort was 10.0/1,000 person-year at risk [95% confidence interval (CI) 5.5–18.3], without a significant increased risk respect to the general population [standardized mortality rate (SMR) 1.34; 95% CI 0.68–2.39]; a significant increased risk of death was found for patients with remote symptomatic epilepsy (SMR 3.0; 95% CI 1.2–6.3) but not with idiopathic epilepsy. Three of the 10 subjects died of causes possibly related to epilepsy.
Discussion:   Our data suggest that spontaneous remission of epilepsy occurs in a substantial proportion of untreated patients affected by chronic epilepsy; concerning mortality, we found a 3-fold increased mortality in patients with remote symptomatic epilepsy.     

Risk of multiple sclerosis after head injury: record linkage study

BACKGROUND: The possibility that head injury may influence the development of multiple sclerosis (MS) has been studied inconclusively in the past. OBJECTIVE: To determine whether head injury is associated with an increased risk of MS. METHOD: Analysis of database of linked hospital and death records, comparing the occurrence of MS in a cohort of people admitted to hospital with head injury and a reference cohort. RESULTS: The rate ratio for MS after head injury, compared with the reference cohort, was 1.1 (95% confidence interval, 0.88 to 1.36). There was no significant increase in the risk of MS at either short or long time periods after head injury. Using length of hospital stay as a proxy for severity of injury, there was no significant increase in the rate ratio for MS after head injuries with hospital stays of less than two days (rate ratio = 1.1 (0.71 to 1.57)), two or more days (rate ratio = 1.0 (0.68 to 1.45)), or seven or more days (rate ratio = 1.3 (0.64 to 2.34)). CONCLUSIONS: The method used, record linkage, ensures that patients' recollection of injury, or any tendency to attribute MS to injury, cannot have influenced the results. Injuries to the head were not associated with either the aetiological initiation or the clinical precipitation of onset of multiple sclerosis.     

Coexistence of schizophrenia and epilepsy: record-linkage studies

For many years, there has been interest in a possible link between epilepsy and schizophrenia. A recent study found a strong, bidirectional link between the two conditions: people with one had a higher than average risk of having the other. Using two large data sets of hospital admission data, we investigated whether schizophrenia and epilepsy occur together in individuals more commonly than expected by chance. We undertook a retrospective cohort study using the Oxford Record Linkage Study (ORLS) and English national linked Hospital Episode Statistics to investigate the coexistence of these conditions. There was an elevated risk of epilepsy in people admitted to hospital with schizophrenia (ORLS rate ratio 2.1, 95% confidence interval 1.6-2.6; England 3.0, 2.9-3.1) and an elevated risk of schizophrenia in people admitted to hospital with epilepsy (ORLS 5.1, 4.1-6.2; England 4.5, 4.3-4.6). We found no consistent difference between male and female patients. Schizophrenia and epilepsy occur together in individuals more frequently than expected by chance.     

Epilepsy and Sudden Death: A Personal View

Summary: Epilepsy Bereaved? is a charity that aims to inform, support, and empower partners, relatives, and friends of people affected by sudden unexpected death in epilepsy (SUDEP). It also works toward preventing mortality due to SUDEP through raising awareness and promoting research. The aim of Epilepsy Bereaved? is to enable bereaved families to be heard. The charity represents more than 200 families in the United Kingdom and overseas. This article presents some of their experiences. All the deaths involved young people, many of whom had been recently diagnosed with epilepsy or had experienced only infrequent seizures. Their families report that they have been unaware of the risk for sudden death. Explanations and counseling from health professionals were rare. This was often felt by families of the victims to be symptomatic of a continuing failure to provide adequate information and support to people with epilepsy. In many cases, distress was exacerbated by the belief that death certificates were inaccurate. In supporting this workshop, Epilepsy Bereaved? hopes that further progress will be made to prevent deaths and suffering from this tragic syndrome.     

Death from suicide versus mortality from epilepsy in the epilepsies: a meta-analysis

OBJECTIVE: Epilepsy is associated with an increased risk of mortality, which, however, is rarely due to the epilepsy itself; suicide, on the other hand, is a chief cause of death among persons with epilepsy. We conducted a meta-analysis to compare data reported in representative studies of suicide mortality in epilepsy with data on mortality from epilepsy in the general population. METHODS: We searched Index Medicus to 2006 through MedLine. We also searched the World Health Statistics Annual to ascertain rates of mortality from epilepsy in the age groups indicated in the studies on patients with epilepsy for specific years and countries. RESULTS: We selected 30 studies comprising 51,216 persons, 188 of whom committed suicide and died. Results obtained for each study were processed together to calculate, per 100,000 individuals in the general population per year, the mean number of suicide deaths expected in persons with epilepsy with respect to the current prevalence of epilepsy. We found that the number of suicide deaths among persons with epilepsy is the same as the number of deaths from epilepsy, suggesting that the former are not included in mortality rates for epilepsy. Also, we found that, according to data derived from cohorts we selected, 32.5% of all deaths of persons with epilepsy are due to suicide and at least 13.5% of all registered suicides are committed by these persons. Study findings may not generalize to other samples, settings, and treatments, thus perhaps tending to exaggerate the phenomenon actually attainable under broader clinical conditions. CONCLUSIONS: Our meta-analysis indicates that suicide deaths in persons with epilepsy are a disturbingly frequent phenomenon that should be addressed to reduce mortality among patients with epilepsy dramatically. In particular, mortality rates for persons with epilepsy do not include mortality from suicide, greatly underestimating death rates and the need for suicide prevention strategies for these patients.     

Epilepsy and Mortality in Africa: A Review of the Literature

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

Cause‐specific mortality among patients with epilepsy: Results from a 30‐year cohort study

Purpose: Death rates of patients with epilepsy are two to three times higher than expected. The aim of our study was to further delineate the causes and the patterns of premature death in patients with epilepsy. Methods: We included all patients who were prospectively enrolled between 1970 and 1999 in our epilepsy outpatient clinical database. Patients were followed until death or December 31, 2003. Standardized mortality ratios (SMRs) were calculated using reference rates from the same region. Key Findings: After 48,595 person years of follow‐up, 648 of 3,334 patients had died, resulting in an overall SMR of 2.2 (95% confidence interval [CI] 2.0–2.4). The highest SMRs were for patients aged 26–45 years (6.8, 95% CI 3.8–11.2) and with symptomatic epilepsies (3.1, 95% CI 2.3–4.9); those for cryptogenic causes (2.2, 95% CI 1.6–3.1) were also elevated, whereas those for idiopathic causes were not increased (2.7, 95% CI 0.7–7.0) after 2 years of follow‐up. SMRs for patients with persistent seizures (3.3, 95% CI 2.6–4.4) were higher than those for seizure‐free patients (1.4, 95% CI 0.8–2.3). The highest cause‐specific SMRs were for epilepsy (91.6, 95% CI 66.3–123.4), brain tumors (22.7, 95% CI 15.7–31.8), and external causes (2.4, 95% CI 1.8–3.3) at end of study period. Significance: Epilepsy patients have a higher‐than‐expected risk of death throughout life and especially during the first 2 years following diagnosis. Standardized mortality rates were especially high in younger patients and in patients with symptomatic epilepsies. Persistent seizures are strongly related to excess mortality.     

Epilepsy, vagal nerve stimulation by the NCP system, all-cause mortality, and sudden, unexpected, unexplained death

PURPOSE: This report concerns the 2-year extension of the study of mortality and sudden, unexpected, unexplained death in epilepsy (SUDEP) in the cohort of patients receiving vagal nerve stimulation by the NCP System for the treatment of epilepsy. METHODS: A cohort of 1,819 individuals was followed 3,176.3 person-years from implantation. The 25 deaths that occurred during NCP System activation were reviewed for SUDEP by a panel. RESULTS: The mortality rates were lower [standardized mortality ratio (SMR = 3.6)] with the extended follow-up compared to the previous finding (SMR = 5.3). The SUDEP rates (4.1 vs. 4.5 per 1,000 person-years) were similar to those in the previous study of this cohort. When the vagal nerve stimulation experience is stratified by duration of use, the rate of SUDEP was 5.5 per 1,000 over the first 2 years, but only 1.7 per 1,000 thereafter. CONCLUSIONS: The mortality and SUDEP rates are similar to those reported from clinical trials of new drugs and cohorts of severe epilepsy. The lower SUDEP rates after 2 years of follow-up are intriguing, but require further investigation.     

Epilepsy and multiple sclerosis in Sicily: a population-based study

PURPOSE: To evaluate the association between epilepsy and multiple sclerosis (MS), we analyzed the incidence of epilepsy in a population-based incidence cohort of MS in Catania, Sicily. METHODS: According to Poser's diagnostic criteria, 170 incident cases of MS have been identified from 1975 to 1994 in the city of Catania. All these subjects underwent a complete neurological examination to confirm the diagnosis of MS and to identify those patients with a history of seizures. Diagnosis of epilepsy was based on the criteria proposed by the International League Against Epilepsy (ILAE) in 1993, and seizures were classified according to the classification of the ILAE, 1981. RESULTS: From 1975 to 1994, 170 subjects with MS had the clinical onset of the disease. The mean annual incidence of MS was 2.3/100,000 (95% CI, 2.0-2.6). Of the 170 defined MS patients, four developed epilepsy after the onset and also diagnosis of MS, giving an incidence rate of epilepsy of 285/100,000 person years at risk (95% CI, 119-684) and 147.8/100,000 when age adjusted to the world standard population. The cumulative risk of developing epilepsy after the onset of MS, evaluated by using the life-table methods, was zero at 1 year and 1.76% at 5 years. Of these four patients, three were classified as having partial seizures with secondary generalization and one with tonic-clonic seizures. CONCLUSIONS: Our data are consistent with those reported in literature suggesting that the risk of developing epilepsy is threefold higher among MS patients than in the general population.