Provision of epilepsy care across Europe Kristina Malmgren

Provision of epilepsy care across Europe Kristina Malmgren ILAE Commission of European Affairs Subcommission on European Guidelines 1998 -2001

European Epilepsy Services Inventory (EESI) n Purpose: To assess the needs and resources available in the provision of basic epilepsy care across Europe n 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) Median Range 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 n N Total number of physicians

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)

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

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 n Different reimbursement systems: q q q 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) q Fixed percentage of drug cost reimbursed (1 country) q No reimbursement at all (1 country)

Economical availability of care n Hospital care in general public and free of charge (24 countries), patient fee in some (8 countries) no financial support in one country n Approximately the same for outpatient visits n In some countries quality of care, or availability of care, much better with private insurance n Investigations free of charge in 20 countries, patient fee in 11, no support in 2 countries

Main problem areas of epilepsy care cross Europe n n n n 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 n Wide range in the number of physicians and specialists involved in epilepsy care across Europe n Many different specialists involved in epilepsy care n In some countries small possibilities for patients in least provided areas to see a specialist n Widely varying availability of multidisciplinary epilepsy teams n Economic availability of epilepsy care varies with several different systems for reimbursement and insurance

Conclusions n n 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