ESBACE

Improving the Life of People with Epilepsy:

A European Perspective

A European study on the burden and care of epilepsy

Funded by the European Commission Directorate-General for Health and Food Safety – Contract No. 2014/1/1995648

In 2013, Epilepsy Alliance Europe 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 standarised methodology.

It was reported that 66 studies on the prevalence of epilepsy in European countries had been published in English, which presented conflicting data, mostly likely due to methodological differences and shortcomings. Reliable cost estimates depended, among other things, on accurate data on the prevalence rates of epilepsy. The definition of epilepsy also varies across studies and the methods to ascertain epilepsy cases are also highly variable.

A sub-task force, created by Epilepsy Alliance Europe, pointed up that the prevalence and cost of epilepsy in Europe was a field with major knowledge gaps, which should be addressed urgently. Obtaining reliable information on the issue is essential for the rational allocation of resources to ensure adequate and cost-effective epilepsy care across Europe.

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.

The specific objectives of ESBACE are as follows:

In accordance with the tasks set in the by the Commission (Commission decision 4319), 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.

As a second step 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.

Examples of good care will be identified. The project will also undertake a survey of the current epilepsy care, resources and organisation, across all member states. The data will inform appropriate resource allocations aiming at equity in access to good quality epilepsy care across the EU.

For the cost study, the patients with epilepsy will be grouped into three categories:

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 Registers in Denmark.

Stigma and Quality of Life (QoL) will be assessed in every epilepsy patient using stigma and QoL inventories translated to the local language.

We will undertake an audit of the care of patients, ascertained following attendance at emergency departments at hospitals, in the four chosen regions. This will allow assessment of care pathways for patients with new and established epilepsy, and of the coordination of care across sectors including emergency services, neurology and primary care, using the same methods as the UK National Audit of Seizure Management in Hospitals www.nash.org, which collected data from around 150 hospitals.

An updated questionnaire, that was used 15 years ago to survey provision of epilepsy care in Europe, will be distributed to all ILAE chapters of the EU member states.