The costs of epilepsy in three different populations of patients with epilepsy

doi:10.1016/S0920-1211(03)00062-7

Epilepsy Research

Volume 54, Issues 2–3, May 2003, Pages 131-140

https://doi.org/10.1016/S0920-1211(03)00062-7 Get rights and content

Abstract

The purpose of this study was to estimate the costs of care in three different populations of patients with epilepsy (general practices (GP), University Hospital (UH), and Epilepsy Center (EC)), and to analyse the distribution of costs by type of services for each patient group. A cost diary was developed to obtain prospective information on epilepsy-attributable service use over a period of 3 months. Similar information over the previous 3 months was obtained from a cost questionnaire. In addition, a quality of life inventory (QOLIE-31) was used. Standard cost lists were applied for the valuation of the direct cost items. A sensitivity analysis was performed for certain cost items for which no reliable data were available. One hundred and sixteen patients with established epilepsy were included, and the mean costs per patient per month (in Euros €) ranged from 52.08 to 357.63. Patients from GP appeared to have lower direct costs, spent less time in seeking or undergoing a treatment, and reported lower seizure frequencies and less severe seizure types than the patients from the other patient groups. Patients from the EC reported the highest productivity changes and unemployment rates and also had the lowest scores on the QOLIE-31. The cost items anti-epileptic drugs, hospital services, unpaid care, and transportation accounted for the majority of the total direct costs.

Introduction

As a chronic health condition, epilepsy has, along with the medical costs, a wide range of added healthcare costs, such as the costs of unemployment and the costs of caregivers.

Because of the time and resources involved in obtaining direct actual data, estimates of the costs of epilepsy are often based on retrospective data or models of epilepsy management (Begley et al., 1999). There are various sources from which direct data can be obtained, such as patient records, insurance company data bases, questionnaires, and cost diaries. Cost diaries can provide detailed resource use information prospectively. Thus, they generally provide detailed and reliable reporting of data over a period of time. Although cost diaries have been used for estimating the direct and indirect costs of chronic diseases, such as fibromyalgia and chronic back pain (Goossens et al., 2000), until now no cost diary has been developed to estimate total resource use for patients with epilepsy. In contrast, cost questionnaires have been applied earlier as a method for measuring the direct and indirect costs of epilepsy retrospectively (Jacoby et al., 1998).

So far, only one study has compared the costs of epilepsy from three different healthcare settings (Guerrini et al., 2001).

With these considerations in mind, we conducted a study of the costs of epilepsy care in three different populations of patients with epilepsy in The Netherlands. The objectives of this study were: (a) to gain insight into the direct and indirect costs of epilepsy care, (b) to analyse the distribution of these costs by type of services for each patient group, and (c) to compare the costs estimated prospectively by means of a cost diary and retrospectively by means of a cost questionnaire. In addition, for each group of patients the seizure frequency and the patients’ perception of their quality of life have been explored.

Section snippets

Selection of patients

Patients with established epilepsy were recruited from three different patient populations. The first subgroup of patients was selected from 14 general practices (GP) throughout the province of Limburg, which is located in the south of The Netherlands. They were included in the study if (a) only general practitioners were responsible for their actual care and (b) at least 3 months before their enrollment in the study, they had been discharged from further follow-up visits at the outpatient

Study population

In total, 116 patients with established epilepsy (24 patients from GP, 49 from the outpatient Department of Neurology of the UH, and 43 patients from the outpatient department of the EC) returned at least one cost diary or cost questionnaire. In total, 67% of the returned diaries and cost questionnaires were completed for all variables, whereas the rest were partly completed for some of the variables. Specifically, 71% of the patients from the GP, 81% of the patients from the UH, and 51% of the

Discussion

In this study, we estimated the costs of care in three different populations of patients with epilepsy by obtaining direct actual data on epilepsy-attributable services from cost diaries and questionnaires. The mean direct costs per month varied between 52.08 and 357.63€.

In total, two-thirds of the returned cost diaries and questionnaires were completed, which corresponds with the response rate reported by Goossens et al. (2000). In estimating direct costs, we attempted to be complete by

Acknowledgements

The authors thank the RNH (Registration Network of General Practices) who assisted in the inclusion of patients from general practices throughout the province of Limburg.

References (22)

G.A. Baker et al.
The relationship between seizure frequency, seizure type and quality of life: findings from three European countries
Epilepsy Res.
(1998)
C.E. Begley et al.
Methodological issues in estimating the costs of epilepsy
Epilepsy Res.
(1999)
O.C. Cockerell et al.
The cost of epilepsy in the United Kingdom: an estimation based on the results of the two population-based studies
Epilepsy Res.
(1994)
M.E. Goossens et al.
The cost diary: a method to measure direct and indirect costs in cost-effectiveness research
J. Clin. Epidemiol.
(2000)
C.E. Begley et al.
The costs of epilepsy in the United States: an estimate from population-based clinical and survey data
Epilepsia
(2000)
P. Berto et al.
Cost-of-illness of epilepsy in Italy
Pharmacoeconomics
(2000)
Blom, J., 1995. The value for society of epidemiology and economics of epilepsy. In: Beran, R.G., Pachlatko, C. (Eds.),...
College van zorgverzekeringen, 1999/2000. Farmacotherapeutisch Kompas....
J.A. Cramer et al.
Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory
Epilepsia
(1998)
R.D. Elwes et al.
Epilepsy and employment. A community based survey in an area of high unemployment
J. Neurol. Neurosurg. Psychiatry
(1991)

S.M.A.A. Evers et al.

Cost of stroke in The Netherlands from a societal perspective

Stroke

(1997)

Cited by (35)

Effect of Epilepsy on Families, Communities, and Society
2017, Seminars in Pediatric Neurology
The effect of epilepsy extends beyond those with the diagnosis and impacts families, communities and society. Caregiver and sibling quality of life is often negatively affected by frequent seizures, comorbid behavioral and sleep disorders and stigma surrounding the diagnosis. Furthermore, the negative effects can be magnified by individual coping styles and resources available to families of those with epilepsy. Beyond the family and immediate caregivers, epilepsy affects local communities by drawing additional resources from education systems. The direct costs of caring for an individual with epilepsy and the indirect costs associated with decreased productivity place financial strain on individuals and health care systems throughout the world. This review details factors affecting family and caregiver quality of life and provides several approaches through which health care providers may address these concerns. Furthermore, we examine the financial effect of epilepsy on society and review emerging strategies to lessen health care use for individuals with epilepsy.
Process evaluation of a multi-component self-management intervention for adults with epilepsy (ZMILE study)
2017, Epilepsy and Behavior
Citation Excerpt :
The psychological burden of having epilepsy is substantial, and is reflected in a reduced quality of life [2,3]. Furthermore, the societal costs are considerable [4,5]. Unemployment rates, for instance, are twice as high among people with epilepsy compared to the general population [6,7].
People with epilepsy need to monitor and manage their symptoms. They, as well as their relatives, have to deal with the psychological burden, reflected in a reduced quality of life. Support in self-management can be of importance. We have developed a multi-component self-management intervention for patients and their relatives (MCI). This eight-week group intervention is conducted by nurse practitioners and consists of six two-hour sessions. The main components are: 1) providing self-management education, 2) stimulating proactive coping and goal-setting and 3) facilitating peer and social support.
This study is a process evaluation to establish the feasibility, fidelity and acceptability of the intervention by assessing performance according to protocol, attendance and adherence, and the opinion of patients, relatives and facilitators about the intervention.
Study population consists of 52 patients with epilepsy living in the community (e.g. at home), 37 relatives and six facilitators. In this prospective mixed methods study, data were gathered using questionnaires for patients and relatives, registration forms for facilitators and by carrying out semi-structured group interviews with patients, relatives and facilitators.
Patients and relatives attended a mean of 5.2 sessions. Forty-seven (90%) patients and 32 (86.5%) relatives attended at least five sessions. The mean group size was 8.1 (SD = 1.3; range 6–10). All elements of the intervention were offered to participants, except for one e-Health tool which was only available at the start of the study. Overall, the sessions were considered useful by patients, their relatives and facilitators. The participation of a relative (social support) and sharing ideas and feelings about having epilepsy with peers (peer support) were rated as important aspects.
This process evaluation revealed that the MCI was largely performed according to protocol, attendance rate was high, and participants and facilitators had, on the whole, a favourable opinion about the MCI, and would recommend it to others with epilepsy and their relatives. Overall, the adherence of patients and relatives was high. The MCI is considered feasible according to patients, relatives and facilitators. Implementation is recommended if the intervention proves to be effective.
Side-effects of antiepileptic drugs: The economic burden
2014, Seizure
Citation Excerpt :
It can be stated that the economic burden of common side-effects is considerable compared with the costs of the disease itself. For example, estimates show total costs of epilepsy per patient per year ranging between €625 and €4292 (US$803–5517) in The Netherlands,24 €8275 (US$10,638) in Sweden,25 €14,575 (US$18,736) in Denmark,26 and €7738 (US$9947) in Germany.27 Although these cost of illness studies used different methods, databases and study periods, they included roughly the same cost categories (e.g. direct and indirect) as those used in this article.
Antiepileptic drugs are a potentially effective treatment for epilepsy. Side-effects are, however, common and the negative consequences necessitate treatment ranging from minor interventions to very expensive hospitalization. This analysis has been conducted to provide insight into the costs of side-effects due to antiepileptic drugs in The Netherlands from a societal perspective.
Resources allocated to care (grouped according to health, patient and family and other) for five different categories of side-effect were measured using a questionnaire. Standard cost prices were derived from the Dutch costing manual. Chronic epilepsy patients were invited to complete the questionnaire if they had experienced side-effects during the previous 12 months.
Based on data from 203 patients, the total societal costs of common side-effects in 2012 are estimated to be €20,751 CI:15,049–27,196 (US$26,675 CI:19,345–34,960) per patient per year. These consist of: health care costs (mean €4458; US$5731), patient and family costs (i.e. informal care, mean €10,526; US$13,531) and other costs (i.e. productivity losses, mean €5761; US$7406). Examining the different categories of side-effects separately, ranging from the most to the least expensive category, the cost estimates per patient per year were as follows: other (mean €13,228; US$17,005), behavioral (mean €9689; US$12,455), general health (mean €7454; US$9582), cognitive (mean €7285; US$9365) and cosmetic side-effects (mean €2845; US$3657). Subgroup analyses showed significant differences in costs between patients using monotherapy and those using polytherapy when looking at cognitive and cosmetic side-effects.
These estimates should be considered in the overall assessment of the economic impact of a pharmacotherapy.
Eliciting patients' preferences for epilepsy diagnostics: A discrete choice experiment
2014, Epilepsy and Behavior
Citation Excerpt :
Epilepsy is a severe brain disease with a large impact on patients' quality of life [1,2], their family and surroundings, and society as a whole [3,4].
Diagnosing epilepsy is a lengthy and burdensome process for patients and their family. Although the need for a more patient-centered approach in clinical practice is widely acknowledged, empirical evidence regarding patient preferences for diagnostic modalities in epilepsy is missing. The objectives of this study were 1) to identify to what extent important attributes of diagnostic procedures in epilepsy affect preferences for a procedure, 2) to determine the relative importance of these attributes, and 3) to calculate overall utility scores for routine electroencephalography (EEG) and magnetoencephalography (MEG) recordings.
A discrete choice experiment was performed to determine patients' preferences, which involved presentation of pairwise choice tasks regarding hypothetical scenarios. Scenarios varied along six attributes: “way of measuring brain activity”, “duration”, “freedom of movement”, “travel time”, “type of additional examination”, and “chance of additional examination”. Choice tasks were constructed using a statistically efficient design, and the questionnaire contained 15 unique unlabeled choice tasks. Mixed multinomial logistic regression was used to estimate patients' preferences.
A total of 289 questionnaires were included in the analysis. McFadden's pseudo R² showed a model fit of 0.28, and all attributes were statistically significant. Heterogeneity in preferences was present for all attributes. “Freedom of movement” and “Chance of additional examination” were perceived as the most important attributes. Overall utility scores did not substantially differ between routine EEG and MEG.
This study suggests that the identified attributes are important in determining patients' preference for epilepsy diagnostics. It can be concluded that MEG is not necessarily more patient-friendly than a routine EEG in primary diagnostics and, regarding additional diagnostics, patients have a strong preference for long-term 24-h EEG over EEG after sleep deprivation. Furthermore, barring substantial heterogeneity within the parameters in mind, our study suggests that it is important to take individual preferences into account in medical decision-making.
Cost of disorders of the brain in Europe 2010
2011, European Neuropsychopharmacology
Citation Excerpt :
The search included articles published between January 1995 and December 2010. Studies on the cost of illness of epilepsy in Europe were available from France, Germany, Italy, the Netherlands, Spain, Sweden, Switzerland and the UK (Beghi et al., 2004; Berto et al., 2000; Cockerell et al., 1994; De Zélicourt et al., 2000; Gessner et al., 1993; Guerrini et al., 2001; Hamer et al., 2006; Jacoby et al., 1998; Kotsopoulos et al., 2003; Sancho et al., 2008; Swingler et al., 1994; Tetto et al., 2002; van Hout et al., 1997) (Table 25). A limitation in the data is that it is often difficult to distinguish whether the epilepsy-specific costs have been separated from costs for co-morbidities.
The spectrum of disorders of the brain is large, covering hundreds of disorders that are listed in either the mental or neurological disorder chapters of the established international diagnostic classification systems. These disorders have a high prevalence as well as short- and long-term impairments and disabilities. Therefore they are an emotional, financial and social burden to the patients, their families and their social network. In a 2005 landmark study, we estimated for the first time the annual cost of 12 major groups of disorders of the brain in Europe and gave a conservative estimate of €386 billion for the year 2004. This estimate was limited in scope and conservative due to the lack of sufficiently comprehensive epidemiological and/or economic data on several important diagnostic groups. We are now in a position to substantially improve and revise the 2004 estimates. In the present report we cover 19 major groups of disorders, 7 more than previously, of an increased range of age groups and more cost items. We therefore present much improved cost estimates. Our revised estimates also now include the new EU member states, and hence a population of 514 million people.
To estimate the number of persons with defined disorders of the brain in Europe in 2010, the total cost per person related to each disease in terms of direct and indirect costs, and an estimate of the total cost per disorder and country.
The best available estimates of the prevalence and cost per person for 19 groups of disorders of the brain (covering well over 100 specific disorders) were identified via a systematic review of the published literature. Together with the twelve disorders included in 2004, the following range of mental and neurologic groups of disorders is covered: addictive disorders, affective disorders, anxiety disorders, brain tumor, childhood and adolescent disorders (developmental disorders), dementia, eating disorders, epilepsy, mental retardation, migraine, multiple sclerosis, neuromuscular disorders, Parkinson's disease, personality disorders, psychotic disorders, sleep disorders, somatoform disorders, stroke, and traumatic brain injury. Epidemiologic panels were charged to complete the literature review for each disorder in order to estimate the 12-month prevalence, and health economic panels were charged to estimate best cost-estimates. A cost model was developed to combine the epidemiologic and economic data and estimate the total cost of each disorder in each of 30 European countries (EU27 + Iceland, Norway and Switzerland). The cost model was populated with national statistics from Eurostat to adjust all costs to 2010 values, converting all local currencies to Euro, imputing costs for countries where no data were available, and aggregating country estimates to purchasing power parity adjusted estimates for the total cost of disorders of the brain in Europe 2010.
The total cost of disorders of the brain was estimated at €798 billion in 2010. Direct costs constitute the majority of costs (37% direct healthcare costs and 23% direct non-medical costs) whereas the remaining 40% were indirect costs associated with patients' production losses. On average, the estimated cost per person with a disorder of the brain in Europe ranged between €285 for headache and €30,000 for neuromuscular disorders. The European per capita cost of disorders of the brain was €1550 on average but varied by country. The cost (in billion €PPP 2010) of the disorders of the brain included in this study was as follows: addiction: €65.7; anxiety disorders: €74.4; brain tumor: €5.2; child/adolescent disorders: €21.3; dementia: €105.2; eating disorders: €0.8; epilepsy: €13.8; headache: €43.5; mental retardation: €43.3; mood disorders: €113.4; multiple sclerosis: €14.6; neuromuscular disorders: €7.7; Parkinson's disease: €13.9; personality disorders: €27.3; psychotic disorders: €93.9; sleep disorders: €35.4; somatoform disorder: €21.2; stroke: €64.1; traumatic brain injury: €33.0. It should be noted that the revised estimate of those disorders included in the previous 2004 report constituted €477 billion, by and large confirming our previous study results after considering the inflation and population increase since 2004. Further, our results were consistent with administrative data on the health care expenditure in Europe, and comparable to previous studies on the cost of specific disorders in Europe. Our estimates were lower than comparable estimates from the US.
This study was based on the best currently available data in Europe and our model enabled extrapolation to countries where no data could be found. Still, the scarcity of data is an important source of uncertainty in our estimates and may imply over- or underestimations in some disorders and countries. Even though this review included many disorders, diagnoses, age groups and cost items that were omitted in 2004, there are still remaining disorders that could not be included due to limitations in the available data. We therefore consider our estimate of the total cost of the disorders of the brain in Europe to be conservative. In terms of the health economic burden outlined in this report, disorders of the brain likely constitute the number one economic challenge for European health care, now and in the future. Data presented in this report should be considered by all stakeholder groups, including policy makers, industry and patient advocacy groups, to reconsider the current science, research and public health agenda and define a coordinated plan of action of various levels to address the associated challenges.
Political action is required in light of the present high cost of disorders of the brain. Funding of brain research must be increased; care for patients with brain disorders as well as teaching at medical schools and other health related educations must be quantitatively and qualitatively improved, including psychological treatments. The current move of the pharmaceutical industry away from brain related indications must be halted and reversed. Continued research into the cost of the many disorders not included in the present study is warranted. It is essential that not only the EU but also the national governments forcefully support these initiatives.
Factors associated with utilization of healthcare resources among epilepsy patients
2008, Epilepsy Research
To determine those variables associated with utilization of healthcare resources in epilepsy patients.
We interviewed 256 epilepsy patients. Target variables included the number of clinic visits, ER visits and in-patient admissions over the past year and AEDs currently being used. Predictor variables were age, race/ethnicity, marital status, education, income, insurance, seizure frequency and QOLIE-10 results. We used univariate analysis to determine those factors associated with the target variables and multivariate analysis to ascertain those independently significant.
On univariate analysis, higher seizure frequency and poorer QOLIE-10 scores were associated with the number of clinic visits, ER visits and in-patient admissions. Increased seizure frequency and male gender were associated with higher use of AEDs. Using ordinal logistic regression, QOLIE-10 scores was the only variable associated with the number of clinic visits. Both seizure frequency and QOLIE-10 scores were independently associated with the number of in-patient admissions while seizure frequency and male gender remained independently associated with AED use. Using binary logistic regression, QOLIE-10 scores and seizure frequency were independently associated with the number of ER visits.
Seizure frequency and quality of life are major factors associated with utilization of healthcare resources in epilepsy patients.

View all citing articles on Scopus

View full text

The costs of epilepsy in three different populations of patients with epilepsy

Abstract

Introduction

Section snippets

Selection of patients

Study population

Discussion

Acknowledgements

Epilepsy Res.

Epilepsy Res.

Epilepsy Res.

J. Clin. Epidemiol.

The costs of epilepsy in the United States: an estimate from population-based clinical and survey data

Epilepsia

Cost-of-illness of epilepsy in Italy

Pharmacoeconomics

Development and cross-cultural translations of a 31-item quality of life in epilepsy inventory

Epilepsia

Epilepsy and employment. A community based survey in an area of high unemployment

J. Neurol. Neurosurg. Psychiatry

Cost of stroke in The Netherlands from a societal perspective

Stroke