29-09-2015 | European Study on the Burden and Care of Epilepsy (ESBACE)

29 September 2015
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The general objective of the pan-European research project, ESBACE (European Study on the Burden and Care of Epilepsy), is to facilitate the development of high-quality epilepsy care at all stages of the disease, equitable across EU countries. ESBACE will provide information on the burden of epilepsy and on current provision and organisation of care in selected EU member states.

Ireland, Denmark, Austria, and Romania have been selected as representing different regions of the EU. In all, a population-based study to identify patients with epilepsy will be carried out in a representative region through methodical research at general practitioners, hospitals and other relevant institutions. Potential cases will have their epilepsy diagnosis confirmed by the research team, the form of epilepsy shall be classified, and comorbidity recorded. In Ireland and Denmark, the epilepsy prevalence will also be determined for the same study populations through utilisation of National Drug Prescription and Health Care Registries.

 The participants will be grouped into three categories:

  1. recently diagnosed;
  2. epilepsy in remission;
  3. chronic epilepsy non seizure free.

Controls matched for age and gender 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 into the local language. An audit of the care of patients will be undertaken; this will be established by recording attendance at emergency departments in 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  which collected data from approximately 150 hospitals.

An updated questionnaire, which was used 15 years ago to survey provision of epilepsy care in Europe, will be distributed to all International League Against Epilepsy (ILAE) chapters of the EU member states.

ESBACE has established a consortium of 10 centres as associate partners, with a further 9 collaborating centres to drive this project. The associate partners include UCD Centre for Disability Studies while three Irish institutions, Dublin City University, Beaumont Hospital and St James's Hospital are among the 10 collaborating partners. The specific objectives of ESBACE are as follows:

  1. Provide data on the prevalence of epilepsy in European countries
  2. Provide information on the cost of epilepsy in European countries
  3. Provide information on the stigma and quality of life of people with epilepsy
  4. Provide information on the coordination of services for patients with seizures, through an audit that ascertains patients attending emergency services
  5. Provide an update on provision and organization of epilepsy care in Europe
  6. Disseminate to health care providers and decision makers information on the burden of epilepsy in Europe, and of deficiencies as well as examples of good quality care

Source: International Bureau for Epilepsy

The ESBACE article is available online.

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