Provision of epilepsy care across Europe Kristina Malmgren ILAE Commission of European Affairs Subcommission on European Guidelines

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 Spain Sweden Switzerland Turkey United Kingdom Yugoslavia

Number of physicians and certain specialists across Europe (per million inhabitants) N MedianRange Total number of physicians Neurologists Neurosurgeons Clinical neurophysiologists Pediatricians Neuropediatricians Psychiatrists Child psychiatrists General practitioners Internists Geriatricians

Availability of established AED across Europe Generic drug name Chapters AED registered N% Acetazolamide2887 Carbamazepine32100 Clonazepam32100 Clobazam2269 Diazepam32100 Ethosuximide2991 Phenobarbital3197 Phenytoin32100 Primidone32100 Valproate32100

Availability of newer AED across Europe Generic drug name Chapters AED registered N% Felbamate1238 Gabapentin2578 Lamotrigine32100 Oxcarbazepine1547 Tiagabine1341 Topiramate2578 Vigabatrin2681 Lorazepam2269 Fosphenytoin928

Frequency of provision of basic epilepsy care by different specialists in the BEST provided areas across Europe (N=32)

Frequency of provision of basic epilepsy care by different specialists in the LEAST provided areas across Europe (N=32)

Epilepsy teams across Europe NRange/million Multidisciplinary epilepsy teams31/ Epilepsy Surgery teams26/

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