ESBACE Project: Understanding Epilepsy Care in Europe

1. ESBACE – EUROPEAN STUDY ON THE BURDEN AND CARE OF EPILEPSY Studiuleuropeanprivindprevalenţa,impactul şi implicaţiileepilepsiei

2. Background • Current published studies on the prevalence of epilepsy in European countries show different data, due to methodological differences/other factors • Reliable cost estimates depends on accurate data on the prevalence rates of epilepsy. • The definition of epilepsy varies across studies and the methods to establish diagnosis of epilepsy are highly variable

3. Background • In 2013, Epilepsy Alliance Europe, a joint task force of the International League Against Epilepsy (ILAE) and the International Bureau for Epilepsy (IBE) held a workshop in the European Parliament in Brussels to highlight the need for a European-wide study on prevalence rates of epilepsy, using appropriate and standardized methodology.

4. Background • In response to a Call for proposals for a prevalence research project, issued in June 2014 by the European Commission Directorate-General for Health and Food Safety, the ESBACE project was successfully submitted.

5. What is ESBACE? • ESBACE- a pan-European research project. • ESBACE - will provide data on the burden of epilepsy and on current provision and organization of care in selected EU member states

6. The specific objectives of ESBACE • ESBACE’s first objective is to define appropriate standard methods for a population-based study of prevalence, cost and stigma of epilepsy, and also to survey organization and quality of epilepsy care.

7. The specific objectives of ESBACE • ESBACE will apply the methods to assess prevalence, cost, and stigma of epilepsy in four member states, selected to represent different types of regions in Europe. • To assess epilepsy care, ESBACE will study patients attending emergency services and assess their prior, acute and onward care pathways in these same countries. • The project will also undertake a survey of the current epilepsy care, resources and organisation, across all member states.

8. About the project • ESBACE has established a consortium of - 10 centers as associate partners - 9 collaborating centers • Runs with support of The European Agency for Health and Consumers.   • Project partner/coordinator: Aarhus University Hospital, Aarhus, Denmark

9. Associated partners • 1. University College Dublin, School of Psychology, Dublin, Ireland • 2. Karolinska Institutet, Stockholm, Sweden • 3. Christian Doppler Klinik, Salzburg, Austria • 4. “Carol Davila” University of Medicine and Pharmacy, Department of neurology, neurosurgery, psychiatry and child and adolescent psychiatry, Bucharest, Romania

10. Associated partners • 5. Umea University, Umea, Sweden • 6. Glostrup Hospital, Department of Clinical Neurophysiology, Glostrup, Denmark • 7. University of Liverpool, United Kingdom • 8. University of Gothenburg, Gothenburg, Sweden • 9. ILAE/IBE Congresss Secretariat, Dublin, Ireland

11. About the project • Ireland, Denmark, Austria, and Romania – selected countries • A population based study to identify patients with epilepsy will be carried out in a representative region through systematic search at general practitioners, hospitals and other relevant institutions. • Potential cases will have their epilepsy diagnosis validated by the research group, the type of epilepsy classified, and comorbidity recorded.

12. About the project • For the cost study, the patients with epilepsy will be grouped into three categories: 1. recently diagnosed; 2. epilepsy in remission; 3. chronic epilepsy non seizure free. • Controls matched for age and sex will be selected from the general population, and epilepsy cases and controls followed for one year to determine direct and indirect costs. • These data will be compared with cost estimates based on National Health Registries in Denmark.

13. About the project • Stigma and Quality of Life (QoL) will be assessed in every epilepsy patient using stigma and QoL questionnaire translated into the local language • An updated questionnaire, that was used 15 years ago to survey provision of epilepsy care in Europe, will be distributed also

14. About the project • An audit of the care of patients, following attendance at emergency departments at hospitals, in the four chosen regions is also to be run- EuroNASH

15. The aims of EuroNASH: • To identify adult cases attending emergency departments with an unprovoked epileptic seizure from a range of European countries who require assessment by a neurologist or seizure expert. • Audit the care provided to those adult patients including the audit of - Care during attendance or hospital admission - Prior care for epilepsy or neurology services - Onward care to epilepsy or neurology services • To assess the feasibility of an Europe wide audit

16. Expected outcome of Esbace • To deliver new information on the prevalence of epilepsy in four EU states from different regions and with different resources and health care ( to reveal if there are significant differences in the prevalence of epilepsy) • To provide a comparison of prevalence estimates using different methods and to demonstrate if the burden of epilepsy can be assessed through data generated from national health registries, which in that case could be a recommendation for sustained monitoring.

17. Esbace in Romania • Coordinator: • Catrinel Iliescu - University of Medicine and Pharmacy “Carol Davila”, Department of Clinical Neurosciences, Bucharest, Romania • Team of 2 researchers: • Carmen Sandu • Madalina Leanca

18. Selected Regions in Romania • Ilfov and Giurgiu selected counties • A lot of 50.000 selected population • Estimated to be covered by 30-40 GP

19. Selected Regions in Romania

20. Proposed ESBACE Centers 1) GP’s practice from Ilfov and Giurgiu; 2)Ambulatory services : neurology and pediatric neurology from Ilfov and Giurgiu; 3) Emergency hospitals , hospitals and ambulatory services covering this specialty for Ilfovși Giurgiu: a.Spitalul de UrgențăFloreasca; b.Spitalul Universitar de UrgențăBucurești;

21. Proposed ESBACE centers c.Spitalul Bagdasar-Arseni; d.Spitalul Sf Pantelimon; e.Spitalul Clinic de Copii Gr Alexandrescu; f.Spitalul Clinic de Copii Marie Curie; g.Spitalul Clinic Pr Dr Al Obregia Neurologie Pediatrică h.Spitalul județean de urgențăGiurgiu.

22. Practical issues • GP’s approach and collaboration • GP’s data base research: complete identification of patients ( not using ICD)/uninssurred persons/ no complete data in the electronic file • How to identify a single unprovoked seizure ( not treated) - code • EuroNash- the need of collaborating hospitals

23. Further reading www.esbace.eu.