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Current status of epilepsy health care for adult patients from Central and Eastern European Union Countries—A survey of members of the Central Europe Epilepsy Experts Working Group
Corresponding author at: Department of Neurology and Epileptology, Medical Center for Postgraduate Education, Czerniakowska Street 231, 04-305 Warsaw, Poland. Tel.: +48 22 629 43 49; fax: +48 22 625 10 14.
Centre of Neurology, Vilnius University Hospital Santariškių Klinikos, Clinic of Neurology and Neurosurgery, Faculty of Medicine, Vilnius University, Vilnius, Lithuania
Department of Child, Adolescent and Developmental Neurology, Division of Pediatrics – University Children's Hospital, University Medical Centre Ljubljana, Slovenia
The aim of this survey was to review and compare the current approaches to epilepsy management in Central and Eastern EU (CEEU) countries.
Method
The questionnaire was sent to ten invited experts from Bulgaria, Czech Republic, Estonia, Hungary, Latvia, Lithuania, Poland, Romania, Slovakia, and Slovenia. It focused on the treatment of adults.
Results
The number of neurologists and epilepsy reference centers is highly variable in CEEU countries. None of the analyzed states has a formal specialization in epileptology. No universal state-approved criteria for reference centers exist in Czech Republic, Estonia, Hungary, Latvia, and Slovenia. Generally, the protocols for epilepsy treatment in CEEU countries, including drug-resistant epilepsy, are in accordance with international guidelines; however, most countries have their own national standards of care and some have local clinical guidelines. Also, the reimbursement systems for antiepileptic drugs in CEEU countries are highly variable. Seven countries have epilepsy surgery centers. The costs of epilepsy surgeries are fully reimbursed, procedures performed abroad may also be covered. The length of time spent on waiting lists for surgery following the completion of preoperative investigations varies from two weeks to three years. The fraction of patients who qualified and were operated on within 12 months ranges from 20% to 100%.
Conclusion
The lack of unified procedures pertaining to the evaluation and therapy of epilepsy is reflected by marked differences in access to treatment modalities for patients from CEEU countries.
Similarly to other chronic disorders, the management of epilepsy constitutes a significant financial burden for healthcare systems. The central role of pharmacotherapy makes the cooperation between specialized healthcare providers and those with budgetary power particularly important to ensure optimal delivery of care.
It is believed that the socioeconomic changes that took place in Central and Eastern European countries over the last two decades, including accession to the European Union (EU), have had highly variable effects on access to care for people with epilepsy; however, there is a lack of relevant data. The aim of this survey was to review and compare current approaches to epilepsy management in Central and Eastern EU (CEEU) countries.
2. Methods
The data presented in this paper was gathered from the Central Europe Epilepsy Experts Working Group. In 2010, all respective experts in the field of epileptology were invited to participate in this body, including representatives of ILAE chapters and reference centers. In March 2012, the questionnaire developed by the Group's Steering Committee (Fig. 1) was sent to ten experts from Bulgaria, Czech Republic, Estonia, Hungary, Latvia, Lithuania, Poland, Romania, Slovakia, and Slovenia who had responded to the invitation. The survey questions focused on the characteristics of the healthcare system, diagnostic process for epilepsy and patient flow, treatment options and other health services available for patients with epilepsy, pharmacoeconomics of epilepsy, as well as on country-specific issues relating to epilepsy management in CEEU states. The availability of epilepsy reference centers was analyzed on the basis of the state-approved criteria of participating countries (if any) and in relation to the International League Against Epilepsy (ILAE) criteria (i.e. availability of at least two neurologists/epileptologists, 24-h availability of video-EEG, availability of neuroimaging – MRI, and availability of a neuropsychologist).
Fig. 1Questionnaire on the management of epilepsy in adult patients.
The participating specialists were asked to complete the survey based on validated sources of information, e.g. literature databases, ministerial registries, registries run by local medical councils, etc. The outcome of the survey was summarized in the form of an initial report, which constituted the basis for this paper.
3. Results
3.1 Healthcare systems of CEEU member countries
CEEU member countries’ health care systems are mainly financed by all citizens, who make compulsory health insurance contributions. The differences between particular countries pertain to the characteristics of the insurer – in most cases it is a centralized organization (national health or sickness fund) with regional branches. However, in some countries, e.g. Czech Republic and Slovakia, patients can choose amongst several insurance providers. In this case, the insurer sets the rules and limits for financing healthcare service in agreement with the local health ministry.
3.2 Availability of specialist care
In all analyzed countries, the care of patients with epilepsy falls into the domain of neurology. However, the number of physicians specializing in neurology is highly variable. This variability is reflected by the number of specialists per 100,000 of the population, ranging from 4.2/100,000 in Slovenia to 14.4/100,000 in Latvia (see Table 1 for more detail).
Table 1Availability of specialist resources in Central and Eastern EU countries.
None of the analyzed countries has a formal specialization in epileptology; however, unofficial titles of epilepsy specialists are issued by scientific societies in the Czech Republic, Hungary and Poland. The Czech Republic is the only country that provides recognized epilepsy experts with additional entitlements (higher limits for antiepileptic drug prescriptions). In all CEEU countries, epileptology is included in neurology training curricula. The courses are organized and certified by various organizations: medical universities, scientific and professional societies, and specialized units dedicated to postgraduate training and specialized training of physicians.
There is also a great variability of the number of epilepsy reference centers available in particular countries. Expressed per number of inhabitants, the most state-licensed reference centers are available in Bulgaria and the fewest in Poland and Romania. Noticeably, no universal state-approved criteria exist for reference centers in the Czech Republic, Estonia, Hungary, Latvia, and Slovenia; consequently, centers located in these countries range from specialized epilepsy surgery centers to academic neurology clinics and privately owned clinics. If universal ILAE criteria are applied, the relative availability of reference centers is greatest in Estonia and Slovakia and the lowest in Poland and Romania. No centers fulfill the ILAE criteria in Latvia (see Table 1).
3.3 Patient organizations
Epilepsy patients’ organizations are registered in all CEEU countries. Their numbers vary from one to more than ten (Table 1). The role of these organizations is limited to the individual support of patients rather than to system-oriented activities in most countries. However, patient organizations are involved in the development of reimbursement policies for antiepileptic agents in Bulgaria, the Czech Republic, Estonia, Romania, Slovakia, and Slovenia.
3.4 Organization of diagnostic and therapeutic process
Neurologists are at the center of the diagnostic and therapeutic processes for patients with epilepsy. General practitioners play a supportive role, while complicated cases are typically seen in reference centers (if available).
In most CEEU countries, emergency medicine specialists constitute the initial point of contact in the diagnostic process of epilepsy. If this disorder is suspected based on the reported symptoms, the patient is referred to a neurologist, who confirms diagnosis and provides treatment. Usually, the general practitioner assumes direct charge of the patient's treatment subsequently, with neurological follow-up visits every 6 months. However, the optimal cooperation between neurologists and general practitioners is a problem in many countries. Furthermore, the local factors lead to some deviations from typical diagnostic and therapeutic processes. For instance, approximately 20% of epilepsy patients in Latvia are treated by psychiatrists due to the markedly shorter waiting time for a psychiatric consultation.
Typically, it is recommended that the highest-ranked reference center should be involved in cases involving particular diagnostic and/or therapeutic challenges, but the criteria for such cases are not clearly defined in most countries. Theoretically, similarly to other EU countries, drug-resistant epilepsy should be one of the domains of the highest-ranked reference centers. The most frequently applied criterion for drug resistance is the failure of at least two appropriately chosen and well-tolerated antiepileptic drugs in monotherapy, usually within a defined period of time. However, many physicians do not adhere to this criterion as it is not been officially adopted. In most cases, this leads to the marked overloading of reference centers with less complicated cases, which limits their capacity to see patients with truly drug-resistant epilepsy. The only exception is Bulgaria, where only a reference center is allowed to confirm diagnosis of drug-resistant epilepsy and can provide access to fully reimbursed antiepileptic drug treatment (including treatment involving newer antiepileptic agents).
3.5 Therapeutic possibilities and pharmacoeconomics
Generally, the protocols for epilepsy treatment in CEEU countries, including for drug-resistant epilepsy, are consistent with ILAE guidelines. However, most countries have their own national standards of care and, in some areas, local clinical guidelines are used. These standards are usually determined by the possibilities of reimbursement for pharmacotherapy in a given country. In some cases, new generation drugs can be reimbursed as the first-line treatment (Table 2).
Table 2Reimbursement systems of pharmacotherapy in Central and Eastern EU countries.
Country
Full/partial reimbursement
Reimbursed in drug-resistant epilepsy only/special indications
In most countries, seizure control or reduction is the basic criterion of treatment effectiveness. Officially, the monitoring of adverse effects of antiepileptic agents is obligatory in all analyzed countries. However, this requirement is usually not reflected by any prescribed practical activities other than the recording of adverse effects in medical documentation.
The reimbursement systems for antiepileptic drugs in CEEU countries are highly variable. In some countries, most or all licensed antiepileptic agents are fully reimbursed: Bulgaria, the Czech Republic, Estonia, Latvia and Slovenia. In others, several drugs are fully reimbursed, while the patient is responsible for the remaining cost, in part or in full (Table 2). Various reimbursement restrictions exist in most countries, including restrictions based on patient's age, seizure type, and the type, brand, and dosage of a particular medication. In Poland, adjunctive treatment with the so-called “new generation drugs” (Table 2) is only reimbursed in patients with drug resistant epilepsy.
The healthcare systems in many countries force physicians to prescribe generic drugs. In all CEEU countries, with the exception of Poland and Slovakia, the reimbursement of generics constitutes the reference price covered by the insurer.
3.6 Availability of epilepsy surgery
The following seven countries have epilepsy surgery centers: Bulgaria, the Czech Republic, Estonia, Hungary, Lithuania, Poland and Romania (Table 3). In all the countries mentioned, these centers offer their own pre-operative diagnostics. The length of time spent on the waiting-list for surgery, following the completion of preoperative investigations, varies from two weeks to three years. The proportion of patients found suitable for surgery and operated within 12 months can range from 20% to 100%. The costs of epilepsy surgery are fully reimbursed in all countries; procedures performed abroad may also be covered by the healthcare systems of Bulgaria, Slovakia and Slovenia. In most CEEU countries access to vagus nerve stimulation or dietary epilepsy treatments is limited.
Table 3Availability of epilepsy surgery procedures in Central and Eastern EU countries (2010–2011 status).
Our study reveals that the availability of epileptologists and specialized reference centers varies greatly between different CEEU countries. There are significant provision shortfalls in some areas. However, in view of the lack of reliable epidemiological data, representing one of the major problems in the region, it is difficult to be certain of specific deficiencies. The few epidemiologic studies available are limited for the most part by the selection of particular populations or by being out of date.
Therefore, in most cases, the national health insurer is the principal source of data concerning the prevalence of epilepsy. In some countries, these data are not available to healthcare providers and scientific societies. Slovakia is the only country that has a national register of patients with epilepsy. This system is far from perfect, however, as suggested by marked discrepancies between the number of cases registered and the statistics provided by national insurers. Latvia is at the other extreme, lacking any documented data on the epidemiology of epilepsy. Consequently, the prevalence of this disease in Latvia can only be estimated based on the statistics from the surrounding countries.
Estimating the prevalence of drug-resistant epilepsy is even more problematic. In the majority of the studied countries, it is assumed not to exceed 30% of all cases. However, these are only rough estimates based on imperfect systems of data collection. Drug-resistant cases cannot be identified on the basis of data provided by insurers as evidence of polytherapy is considered a criterion for the definition of drug resistant epilepsy in some countries. This approach can lead to an underestimation of the prevalence of drug resistant epilepsy. In contrast, medication use data (but not allowing for patients using polytherapy) can lead to an overestimation of the total prevalence of epilepsy.
When looking at drug consumption, one should keep in mind that some patients do not take prescribed medications for a variety of reasons. Estimating the prevalence of drug-resistant epilepsy based on drug consumption rates is also an imperfect approach as some antiepileptic agents are prescribed for other indications, such as other neurologic conditions or psychiatric disorders. Furthermore, other factors related to local traditions can influence prescription patterns of antiepileptic agents irrespective of insurers’ policies.
Finally, the insurer's statistics are difficult to obtain. Administrative red tape or the decentralization of healthcare systems, such as in the Czech Republic, further complicates the process. Regardless of the accessibility of insurer's prevalence data, these types of data can also be confounded by reporting bias. For instance, Hungary cases registered as having “epilepsy” by the national insurer include patients who have experienced alcohol withdrawal seizures.
Another obstacle identified by this study is the lack of unified procedures for the diagnostic and therapeutic management of epilepsy, including drug-resistant cases. This is reflected by marked differences in access to modern treatment modalities for patients from some CEEU countries. Due to the lack of standardization of diagnostic and therapeutic procedures, the estimation of costs associated with the management of refractory epilepsy in CEEU countries is virtually impossible. A marked difference in the costs of epilepsy management within one country was confirmed by the results of a Polish multicenter study. This study also revealed that medications and social services generate most of the costs associated with epilepsy treatment, and that diagnostic procedures account for less than 5% of costs spent by healthcare system on the management of this disease.
On the basis of these observations, finding a regional consensus for diagnosing and treating epilepsy seems the next logical step. Such guidelines, similar to the standards approved in other EU states,
could be presented to local health ministries, serving as a platform for medical and administrative cooperation oriented toward the optimization of care for patients with epilepsy. However, the coordination of these activities requires defined criteria and reference center expertise. By design, such centers should control the care of patients and play an important role in the allocation of healthcare resources. Furthermore, they would be responsible for the coordination of cooperation within the region.
This study constitutes a unique presentation of previously unpublished data and experience of experts dealing with the management of epilepsy in CEEU countries. Although the 2003 survey on the provision of epilepsy care across Europe, performed by the ILAE Commission of European Affairs: Subcommission on European Guidelines, included most CEEU countries participating in our study, the findings were reported collectively and the specific problems of Central and Eastern Europe were not addressed separately.
We hope that, aside from providing information about the status of epilepsy care in CEEU countries, our publication will stimulate specific organizational activities, which in turn will be supported by the expert knowledge and experience of our colleagues from Western EU centers.
Acknowledgements
The scientific meeting on which this article is based (Central Europe Epilepsy Experts Working Group Meeting, January 2011, Warsaw, Poland) was initiated and supported by GlaxoSmithKline (GSK). Members of the Scientific Committee who developed the meeting program were selected by the Chairman, Professor Joanna Jędrzejczak, in consultation with GSK. Scientific Committee members were paid an honorarium for their participation in the meeting.
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