Provision of epilepsy
care across Europe
Kristina Malmgren
ILAE Commission of
European Affairs
Subcommission on
European Guidelines 1998-2001
European Epilepsy Services Inventory
(EESI)

Purpose: To assess the needs and resources
available in the provision of basic epilepsy care
across Europe

Methods: Distribution of a mailed questionnaire
to all European ILAE chapters, the EESI.
Response rate 89%, 32 of 36 chapters
K Malmgren et al.,Epilepsia 2003:44(5):727-31
EESI – responding ILAE Chapters
Austria
Belgium
Bulgaria
Croatia
Denmark
Estonia
Finland
France
Georgia
Germany
Greece
Hungary
Ireland
Israel
Italy
Latvia
Lithuania
Malta
Netherlands
Norway
Poland
Portugal
Romania
Russia
Slovakia
Slovenia
Spain
Sweden
Switzerland
Turkey
United Kingdom
Yugoslavia
Number of physicians and certain specialists across
Europe
(per million inhabitants)
N
Median
Range

Total number of physicians
31
3 380
667-5 439
Neurologists
32
33
3-131
Neurosurgeons
31
11
2-26
Clinical neurophysiologists
21
5
1-34
Pediatricians
31
125
22-426
Neuropediatricians
21
6
1-25
Psychiatrists
31
87
15-218
Child psychiatrists
24
12
1-45
General practitioners
30
540
61-2 000
Internists
29
211
37-607
Geriatricians
18
13
2-70
Availability of established AED across Europe
Chapters
AED
registered
N
%
Acetazolamide
28
87
Carbamazepine
32
100
Clonazepam
32
100
Clobazam
22
69
Diazepam
32
100
Ethosuximide
29
91
Phenobarbital
31
97
Phenytoin
32
100
Primidone
32
100
Valproate
32
100
Generic drug name
Availability of newer AED across Europe
Chapters
AED
registered
N
%
Felbamate
12
38
Gabapentin
25
78
Lamotrigine
32
100
Oxcarbazepine
15
47
Tiagabine
13
41
Topiramate
25
78
Vigabatrin
26
81
Lorazepam
22
69
Fosphenytoin
9
28
Generic drug name
Frequency of provision of basic epilepsy care by different
specialists in the BEST provided areas across Europe (N=32)
General practitioners
30
22
14
6
-2
-10
-18
Paramedicals
Pediatric psychiatrists
Internists
Neurologists
Psychiatrists
Pediatricians
Neuropediatricians
Adults
Children
Elderly
Mentally retarded
Frequency of provision of basic epilepsy care by different
specialists in the LEAST provided areas across Europe (N=32)
General practitioners
30
22
14
6
-2
-10
-18
Paramedicals
Pediatric
psychiatrists
Internists
Neurologists
Psychiatrists
Pediatricians
Neuropediatricians
Adults
Children
Elderly
Mentally retarded
Epilepsy teams across Europe
N
Range/million
Multidisciplinary
epilepsy teams
31/32
0.07 - 5.3
Epilepsy Surgery
teams
26/32
0.03 - 0.8
Economical availability of AEDs

Different reimbursement systems:



100% reimbursement of drug cost – but in reality this
may apply only for certain insurances (12 countries)
Variable percentage of reimbursement, from 100% for
older drugs to much less for newer drugs (8 countries)
General percentage of reimbursement up to a ’ceiling’
(3 countries)

Fixed percentage of drug cost reimbursed (1 country)

No reimbursement at all (1 country)
Economical availability of care

Hospital care in general public and free of
charge (24 countries), patient fee in some (8
countries) no financial support in one country

Approximately the same for outpatient visits

In some countries quality of care, or availability
of care, much better with private insurance

Investigations free of charge in 20 countries,
patient fee in 11, no support in 2 countries
Main problem areas of epilepsy care
cross Europe








Lack of, or under-utilisation of, epilepsy surgery
Lack of comprehensive care
Stigma and social problems
High cost of AED (especially newer drugs)
Lack of specialists and of specialised epilepsy care
Problems with financing, equipment and resource
allocation
Insufficient professional education and knowledge
Lack of epidemiological data
Summary

Wide range in the number of physicians and
specialists involved in epilepsy care across Europe

Many different specialists involved in epilepsy care

In some countries small possibilities for patients in
least provided areas to see a specialist

Widely varying availability of multidisciplinary
epilepsy teams

Economic availability of epilepsy care varies with
several different systems for reimbursement and
insurance
Conclusions


Knowledge about differences in the patterns
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 epilepsy care
across Europe.
Education about epilepsy at all levels of
health care as well as to the public and to the
patients is a number one priority