Epilepsia, 44(5):727–731, 2003 Blackwell Publishing, Inc. © 2003 International League Against Epilepsy

Special Report ILAE Commission of European Affairs Subcommission on European Guidelines 1998–2001

The Provision of Epilepsy Care across Europe *Kristina Malmgren, †Roland Flink, ‡Alla B. Guekht, §Roberto Michelucci, 㛳Brian Neville, ¶Birthe Pedersen, **Francisco Pinto, ††Ulrich Stephani, and ‡‡Cigdem Özkara *Epilepsy Research Group, Institute of Clinical Neuroscience, Sahlgrenska University Hospital, Göteborg, Sweden; †Department of Neuroscience, Clinical Neurophysiology, Academic Hospital, Uppsala, Sweden; ‡Department of Neurology and Neurosurgery, Russian State Medical University, Moscow, Russia; §Divisione di Neurologia, Dipartimento di Neuroscienze, Ospedale Bellaria, Bologna, Italy; 㛳Neuroscience Unit, Institute of Child Health, University College, London, England; ¶Neurologisk Avdelning, Aalborg Sygehus Nord, Denmark; **Consulta de Epilepsia, Hospital Santa Maria, Lisboa, Portugal; ††Klinik für Neuropädiatrie der Universität, Kiel, Germany; and ‡‡Cerrahpasa Medical Faculty, Department of Neurosurgery, Istanbul University, Istanbul, Turkey

Summary: Purpose: To assess the needs and resources available in the provision of basic epilepsy care across Europe. Methods: A mailed questionnaire was used, the European Epilepsy Services inventory (EESI). The EESI was distributed to all 36 European chapters of the International League Against Epilepsy (ILAE), and answers were obtained from 32, a response rate of 89%. For the purpose of studying trends across Europe, the chapters were divided into a Western, an Eastern, a Central, and a Southern group. Results: The survey results showed that there was a wide range in the number of physicians and specialists involved in epilepsy care across Europe, with a trend toward higher numbers of neurologists, pediatricians, and pediatric neurologists in Eastern Europe. Many different specialities were involved in epilepsy care, and many chapters reported differences in the

provision of care across their countries, with less possibility for patients to see a specialist in the least provided areas, where most epilepsy patients were cared for by general practitioners and internists. Problems with high costs of the newer antiepileptic drugs were most pronounced in Eastern Europe. Problems with lack of comprehensive care and of epilepsy specialists, with stigma and social problems, and with insufficient professional education and knowledge about epilepsy were reported all across Europe. Conclusions: Knowledge about differences in the pattern of provision of epilepsy care and about the main problems encountered by the European ILAE chapters is of importance in the continuing efforts to improve management of epilepsy all over Europe. Key Words: Epilepsy care—Inventory— Antiepileptic drugs—Stigma.

The International League Against Epilepsy (ILAE) Commission of European Affairs (CEA) in 1997 published a report entitled “Appropriate Standards of Epilepsy Care Across Europe” (1), an outline of a consensus view achieved after consultation of the European Advisory Council (representing all European chapters of the ILAE). After this initiative, the CEA Subcommission on European Guidelines assessed the provision of epilepsy care in Europe to identify weaknesses and strengths. This is important to direct the efforts of the epilepsy profes-

sional community and government agencies in the appropriate direction. METHODS The European Epilepsy Services Inventory The European Epilepsy Services Inventory (EESI) was developed. The EESI is divided in two parts, the first containing objective questions, and a second part with more subjective assessments. The questions in the first section concerned official population data and data about the medical profession (e.g., total number of physicians and number of physicians in specialities relevant for epilepsy treatment). There also were questions about the availability of and reimbursement for antiepileptic drugs (AEDs) and the economic availability of epilepsy care

Accepted December 28, 2002. Address correspondence and reprint requests to Dr. K. Malmgren at Institute of Clinical Neuroscience, Epilepsy Research Group, Sahlgrenska University Hospital, SE-413 45 Göteborg, Sweden. E-mail: [email protected]

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(outpatient care as well as hospitalization and investigations). In the second section, the chapters were asked to assess the extent to which physicians/specialists provide basic epilepsy care (diagnosis and first-line treatment) in two settings, the best-provided area and the leastprovided area of each country. We requested the approximate number of specialized multidisciplinary epilepsy teams (with and without epilepsy surgery programs). At the end of the inventory, an open-ended question asked each respondent to list the three most important problems of epilepsy care in the country. All questions allowed additional comments. The EESI was distributed to presidents and first secretaries of all European ILAE chapters in July 1999. Answers were obtained from 32 of the 36 European chapters (Table 1) by the autumn of 2000 (i.e., the response rate was 89%). Analyses The results were analyzed at group level by using descriptive statistics. Data from identified individual chapters are not reported, but to study whether there were any discernible trends in different parts of Europe, the chapters were subdivided into a Western, a Central, an Eastern, and a Southern group of countries. The Western group comprised Austria, Belgium, Denmark, Finland, France, Germany, Ireland, the Netherlands, Norway, Sweden, Switzerland, and the United Kingdom. The Central group was represented by Hungary, Poland, Slovakia, and Slovenia; and the Southern group, by Greece, Israel, Italy, Malta, Portugal, Spain, and Turkey. The Eastern group comprised Bulgaria, Croatia, Estonia, Georgia, Latvia, Lithuania, Romania, Russia, and Yugoslavia. RESULTS Number of physicians and specialists of relevance for epilepsy treatment The total number of physicians in each country as well as the numbers of general practitioners and internists, neurologists, clinical neurophysiologists, pediatricians, pediatric neurologists, psychiatrists, child psychiatrists, TABLE 1. European Epilepsy Services Inventory: responding ILAE chapters (N = 32) Austria Belgium Bulgaria Croatia Denmark Estonia Finland France Georgia Germany Greece

Hungary Ireland Israel Italy Latvia Lithuania Malta Netherlands Norway Poland Portugal

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Romania Russia Slovakia Slovenia Spain Sweden Switzerland Turkey United Kingdom Yugoslavia

geriatricians, and neurosurgeons were requested and related to the total population of each country. Certain specialities were found to exist only in a limited number of countries: clinical neurophysiology, pediatric neurology, child psychiatry, and geriatrics. Several chapters commented that other specialists were involved in epilepsy treatment in their countries, such as nursing home physicians and community physicians. In a few southern countries, neurology and psychiatry have been a combined speciality, and in one country, pediatric neurology and child psychiatry remained a combined discipline. Several chapters also commented that the numbers listed do not necessarily equal the number of active specialists. As illustrated in Table 2, there is a wide range in the number of physicians and specialists per million inhabitants across Europe. The range is wide in all groups, with a trend toward higher numbers of neurologists, pediatricians, and pediatric neurologists in the Eastern group. Availability of antiepileptic drugs As illustrated in Table 3, the following antiepileptic drugs (AEDs) were registered in all countries: carbamazepine (CBZ), clonazepam (CZP), diazepam (DZP), lamotrigine (LTG), phenytoin (PHT), primidone (PRM), and valproate (VPA). Nonregistered drugs were sometimes available for compassionate use. The pattern of registered versus nonregistered drugs varies between the groups. In the Western group, ethosuximide (ESM), gabapentin (GBP), nitrazepam (NTZ), topiramate (TPM), and vigabatrin (VGB) were registered in all countries. In the Central group, the additional registered drugs were acetazolamide (ACZ), clobazam (CLB), GBP, NTZ, phenobarbital (PB), TPM, and VGB. In the Eastern group of countries, ESM and PB were registered, and in the Southern group, lorazepam (LZP), PB, and VGB were registered in all countries. Additional

TABLE 2. Number of physicians and certain specialists per million inhabitants across Europe

Total number of physicians Specialists: Neurologists Neurosurgeons Clinical neurophysiologistsa Pediatricians Pediatric neurologistsa Psychiatrists Child psychiatrists General practitioners Internists Geriatriciansa

N

Median

Range

31

3,380

667–5,439

32 31 21 31 21 31 24 30 29 18

33 11 5 125 6 87 12 540 211 13

3–131 2–26 1–34 22–426 1–25 15–218 1–45 61–2,000 37–607 2–70

N, number of responding ILAE chapters; ILAE, International League Against Epilepsy. a Speciality in a restricted number of countries.

EPILEPSY CARE IN EUROPE TABLE 3. Availability of antiepileptic drugs across Europe (N = 32)

Generic drug name Acetazolamide Bromide Carbamazepine Clobazam Clonazepam Diazepam Ethosuximide Felbamate Fosphenytoin Gabapentin Lamotrigine Lorazepam Nitrazepam Oxcarbazepine Phenobarbital Phenytoin Primidone Sulthiame Tiagabine Topiramate Valproate Vigabatrin

Countries where Countries where the AED is the AED is registered not registered no. (%) no. (%) 28 (87) 10 (31) 32 (100) 22 (69) 32 (100) 32 (100) 29 (91) 12 (38) 9 (28) 25 (78) 32 (100) 22 (69) 30 (94) 15 (47) 31 (97) 32 (100) 32 (100) 10 (31) 13 (41) 25 (78) 32 (100) 26 (81)

4 (13) 18 (56) 0 (0) 8 (25) 0 (0) 0 (0) 2 (6) 15 (46) 18 (56) 6 (19) 0 (0) 7 (22) 2 (6) 11 (34) 0 (0) 0 (0) 0 (0) 19 (60) 16 (50) 7 (22) 0 (0) 5 (16)

Countries where the AED is available for compassionate use no. (%) 0 (0) 4 (13) 0 (0) 2 (6) 0 (0) 0 (0) 1 (3) 5 (16) 5 (16) 1 (3) 0 (0) 3 (9) 0 (0) 6 (19) 1 (3) 0 (0) 0 (0) 3 (9) 3 (9) 0 (0) 0 (0) 1 (3)

drugs (not asked for in the EESI but reported by chapters) available in the Western group of countries were barbexaclone, ethadione, mephenytoin (MPH), midazolam (MDL), piracetam, stiripentol (STP), tetracasactid, and zonisamide (ZNS). In the Southern group, barbexaclone and buxamina were mentioned. Several chapters commented that registration of a certain drug may be limited to very specific conditions or age groups only. The economic availability of AEDS was another topic. Several systems of reimbursement could be discerned among the 25 chapters that answered this question. These could be divided as follows: 1. All registered AEDs are 100% reimbursed. This was reported by 12 chapters from all groups. Several chapters, however, commented that in some cases, the reimbursement would depend on the kind of insurance the patient had. In other cases, the reimbursement would depend on regional funds. 2. A variable percentage of reimbursement was paid, from 100% for older AEDs to much less for the newer drugs. Eight chapters, particularly from Eastern and Southern Europe, reported this system. 3. A general percentage of reimbursement was paid up to an annual “ceiling” for total drug cost for individual patients. Three chapters in the Western group reported this system. 4. A fixed percentage of reimbursement was paid across all AEDs (one country). 5. No reimbursement at all (one country).

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Economic availability of epilepsy care Hospital care is public and free of charge in the majority of the European countries, although some have a patient fee. As illustrated in Table 4, epilepsy care is most commonly free in the Southern and Central countries, whereas several of the countries in the Western group have patient fees. In some Eastern European countries, difficulties are found with financial support, and one country reported no financial support at all and had in recent years relied on help from the Red Cross. Provision of basic epilepsy care The Chapters were asked to rate which categories of physicians usually provide basic epilepsy care (diagnosis and first-line treatment) to different categories of epilepsy patients in two different settings: the best-provided and the least-provided areas. Several categories of physicians could be considered for each choice. In most cases, the assessments about the provision of basic epilepsy care were personal, by the chapter representative answering the EESI. A limited number of chapters had answers based on nationally or internationally published reports about the provision of epilepsy care (2–8). As illustrated in Table 5, adults are most commonly treated by neurologists, children by pediatric neurologists, the elderly by neurologists, and the cognitively impaired equally by neurologists and pediatric neurologists in the best-provided (usually urban) areas. It is, however, also common for children with epilepsy to be treated by pediatricians. A proportion of patients in all groups are treated by general practitioners. The cognitively impaired patients with epilepsy are those for whom the care is most divided between different specialities: general practitioners, neurologists, pediatric neurologists, pediatricians, and psychiatrists. Psychiatrists to a certain extent provide services for cognitively impaired patients with epilepsy all across Europe, but in Eastern Europe, they are reported to provide care commonly to adults and elderly with epilepsy, and child psychiatrists to some extent provide care to children with epilepsy. Some chapters stated that the provision of care is equal across the country, but for many, differences exist between rural and urban areas and sometimes north versus south. In the least-provided areas, there is less possibility for patients to see a specialist: fewer patients are seen by neurologists, pediatric neurologists, or pediatricians, and more are taken care of by general practitioners, internists, and in the Southern and Eastern group, even by paramedicals (Table 6). Multidisciplinary epilepsy teams All chapters except one stated that they have multidisciplinary epilepsy teams working in epilepsy, and 26 of 32 chapters reported having teams with epilepsy surgery Epilepsia, Vol. 44, No. 5, 2003

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K. MALMGREN ET AL. TABLE 4. Economic availability of epilepsy care Public (free of charge)

Partly free (patient fee)

No financial support

W S C E Total W S C E Total W S C E Total (n ⳱ 12) (n ⳱ 7) (n ⳱ 4) (n ⳱ 9) (N ⳱ 32) (n ⳱ 12) (n ⳱ 7) (n ⳱ 4) (n ⳱ 9) (N ⳱ 32) (n ⳱ 12) (n ⳱ 7) (n ⳱ 4) (n ⳱ 9) (N ⳱ 32) Outpatient visits Hospitalization Investigations: Neuroradiology EEG Blood chemistry TDM

6 8

6 7

4 3

7 6

23 24

6 4

1 0

0 1

1 2

8 7

0 0

0 0

0 0

1 1

1 1

7 7 8 6

5 5 5 6

4 4 4 3

4 5 5 6

20 21 22 21

5 5 4 4

2 2 2 1

0 0 0 1

4 2 2 0

11 9 8 6

0 0 0 0

0 0 0 0

0 0 0 0

1 2 2 2

1 2 2 2

programs. The number of epilepsy teams ranged from 0.07 to 5.3 per million inhabitants, with no clear difference between the geographic groups as to number of epilepsy teams per million inhabitants. Teams with epilepsy surgery programs ranged from 0.03 to 0.8 per million. Of the six countries without epilepsy surgery programs, five are from the Eastern and one from the Southern group.

care also was reported as a major problem all over Europe. The lack of knowledge and the educational needs of physicians and other medical professionals were underlined by chapters all across Europe. DISCUSSION

Main problem areas of epilepsy care across Europe An open-ended question asked for a list of the most important problems of epilepsy care in the respective countries. The most common problem areas were the following: Lack of, or underuse of, epilepsy surgery; lack of comprehensive care; stigma and social problems; high cost of AEDs (especially newer drugs); lack of specialists and of specialized epilepsy care; problems with financing, equipment, and resource allocation; insufficient professional education and knowledge about epilepsy; and lack of epidemiologic data. Lack of epilepsy surgery was more commonly reported from the Eastern, Central, and Southern groups, whereas several Western chapters mentioned that epilepsy surgery was underused (i.e., underused even when present). Lack of comprehensive care, stigmatization, and social problems such as unemployment were reported all across Europe. As expected, problems with the high AED costs as well as with financing and equipment provision were most important in Eastern Europe. Lack of epilepsy specialists and lack of specialized epilepsy

In the last few years, several important European initiatives have been taken to change and improve the conditions of people with epilepsy. The Commission on European Affairs outlined the “Appropriate Standards for Epilepsy Care” (1), and the European Epilepsy Academy (EUREPA) has organized a successful program for improving expertise in epileptology in all parts of Europe. Under the auspices of the Global Campaign “Epilepsy—Out of the Shadows,” the Heidelberg conference in 1998 led to the formulation of the European Declaration on Epilepsy, and in 2001, the European White Paper on Epilepsy was launched in the European Union (9). As part of this European agenda, the present survey was an initiative from the Commission on European Affairs. Knowledge about differences in the pattern of provision of epilepsy care about the main problem areas encountered by the European ILAE chapters is helpful in the continuing efforts to develop high-quality management of epilepsy all over Europe. The EESI concentrates on the prerequisites for and the provision of basic epilepsy care, and it became evident that large variations exist across Europe. The wide range in numbers of physicians in general and of specialists

TABLE 5. Frequency of the provision of basic epilepsy care by different specialists in the best-provided areas across Europe (N = 32)

TABLE 6. Frequency of provision of basic epilepsy care by different specialists in the least-provided areas across Europe (N = 32)

Physicians General practitioners Internists Neurologists Pediatricians Pediatric neurologists Psychiatrists Child psychiatrists Paramedics

Adults no. (%)

Children no. (%)

Elderly no. (%)

Cognitively impaired no. (%)

9 (28) 2 (6) 28 (88) 2 (6) 1 (3) 4 (13) 0 (0) 1 (3)

4 (13) 1 (3) 6 (19) 19 (59) 24 (75) 0 (0) 2 (6) 1 (3)

12 (38) 2 (6) 25 (78) 2 (6) 1 (3) 3 (9) 0 (0) 1 (3)

9 (28) 2 (6) 17 (53) 7 (22) 16 (50) 9 (28) 2 (6) 1 (3)

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Physicians General practitioners Internists Neurologists Pediatricians Pediatric neurologists Psychiatrists Child psychiatrists Paramedics

Adults no. (%)

Children no. (%)

Elderly no. (%)

Cognitively impaired no. (%)

10 (31) 4 (13) 15 (47) 0 (0) 0 (0) 1 (3) 0 (0) 3 (9)

8 (25) 2 (6) 9 (28) 14 (44) 9 (28) 0 (0) 0 (0) 3 (9)

12 (38) 4 (13) 11 (34) 0 (0) 0 (0) 2 (6) 0 (0) 2 (6)

12 (38) 5 (16) 11 (34) 6 (19) 5 (16) 6 (19) 2 (6) 2 (6)

EPILEPSY CARE IN EUROPE relevant to epilepsy patients in particular implies that many patients are treated by physicians with a limited knowledge of epilepsy and without the multiprofessional resources offered by an epilepsy team. Lack of comprehensive care, lack of epilepsy specialists, as well as lack of knowledge of epilepsy within the medical profession are all among the major problems reported by chapters all across Europe. In many countries, clear differences are found between areas (rural vs. urban or south vs. north). In some Southern and Eastern European countries, even paramedics are involved in the basic treatment of epilepsy, reflecting the influence of superstition and religious beliefs about epilepsy and its management. This is especially common in rural areas. In a recent epidemiologic study from a rural area of Turkey (10), 65% of the confirmed cases with epilepsy were reported to have consulted a religious person (a hodca) at the onset of or during the course of the disease in the hope of being cured. This compares with 63% who had sought help from physicians. Concerning the availability of AEDs, the main problem area concerns the economic availability of newer drugs. The reimbursement systems vary across Europe, and it is difficult to know the implications of each system for patients because of different insurance systems and funding. The availability of AEDs is a major problem in Eastern Europe, but also in other parts of Europe, the availability of the newer AEDs is limited because of higher costs that are not sufficiently reimbursed. Problems with the economic availability of epilepsy care, both outpatient and hospitalization, also were most pronounced in Eastern Europe. Even with large national and regional variations in the provision of epilepsy care across Europe, it is striking that the same main problem areas are reported throughout Europe. These problem areas are clearly more pronounced in eastern Europe, but even European countries with the best provision of epilepsy care have problems with lack of comprehensive care and of epilepsy specialists, with stigmatization and social problems, and with lack of knowledge, even within the medical profession. The latter problem may be one reason for the underuse of epilepsy surgery and of specialized epilepsy care reported from these chapters. Among the few published surveys about epilepsy care, a recent study reported the needs and resources of epilepsy care in Latin America and the Caribbean (11). Also in this region of the world, the number of neurologists as well as physicians in general varied widely between countries. The availability of AEDs varied, but in general, the drugs inquired about were more available

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in the private than in the public sector. Also in this survey, lack of knowledge about epilepsy among primary care physicians was found to be a problem, and linkages between medical personnel and social workers were found to be almost nonexistent. Based on the survey data, the authors outlined the special needs of the region to improve epilepsy care in Latin America and the Caribbean (11). Concerted efforts at a global level are needed to improve epilepsy care, and regional surveys concerning the provision of epilepsy care at different levels may be informative and helpful instruments. The EESI has helped to elucidate some of the problems of epilepsy care in Europe, especially the specific need for education of medical professionals at community and specialist level. This is vital because these groups often are responsible for the provision of basic epilepsy care. The complete questionnaire can be requested from the first author and also is available as an appendix to the Web version of the report. Acknowledgment: We thank EUCARE and especially Karen Donaldson for administrative help with collating the surveys and all European chapters of the ILAE for the effort and time taken to answer the EESI.

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