Epilepsy in the WHO European region: Fostering epilepsy care in Europe

Abstract

On 26th August 2010 at the European International Bureau for Epilepsy (IBE) congress in Oporto, Portugal, the report “Epilepsy in the WHO European Region” was launched, a joint publication produced by SEIN (WHO Collaborating Centre for Research, Training and Treatment in Epilepsy), WHO Headquarters, and the ILAE/IBE/WHO Global Campaign Against Epilepsy. The European Region of the World Health Organisation comprises 53 countries. It has a population of 850 million people, who speak approximately 45 official languages. Striking is the diversity in economy and culture seen across the region, with 11 countries designated as low or low middle income by World Bank categories. This report examines the prevalence of epilepsy and its management across the region, highlighting some key areas that require action. Within Europe there is a relatively large number of individuals with epilepsy. With a prevalence of 8.2 per 1,000, around 6 million individuals have epilepsy, and 15 million people will have had epilepsy at some time in their lives. Despite the fact that up to 70% of individuals can be treated effectively, the treatment gap between those requiring treatment and those receiving it is large. This may not be surprising in the low income countries, not helped by cultural perceptions of the condition, as well as the high cost of and availability of antiepileptic drugs (AEDs) and services, but it has been demonstrated that even the more “developed” countries are “developing” where epilepsy management is considered. The provision of epilepsy treatment and care across Europe was investigated in a survey of the European International League Against Epilepsy (ILAE) chapters by the Commission for European Affairs. A questionnaire, the European Epilepsy Services Inventory, was sent to all 36 European chapters of the ILAE, with responses from 32. In addition to showing the regional variations in provision of epilepsy care, the results also demonstrated a wide range in the numbers of physicians and specialists involved in epilepsy care. Furthermore, although there was a high number of epilepsy specialists listed in many countries, the highest of all the World Health Organization (WHO) regions, access to comprehensive epilepsy care in many countries was limited, with a high rate of misdiagnosis, over investigation, as well as over treatment and under treatment. In addition, although epilepsy surgery is recognized as curative for selected individuals, the survey demonstrated such management to be underutilized in many countries in Europe. Although there were large regional and national variations in the provision of epilepsy care, similar problems were reported. The most common problems were lack or underuse of epilepsy surgery; lack of comprehensive care; stigma and social problems; the high cost of AEDs (especially the newer drugs); lack of specialists and of specialized epilepsy care; lack of financing, equipment, and resource allocation; insufficient professional education and knowledge about epilepsy; and lack of epidemiologic data, violation of patients rights, and employment problems. Furthermore, the mortality rate among people with epilepsy is higher than that among the general population; it is estimated that there are 33,000 epilepsy deaths in Europe each year, 13,000 of which are preventable. In response, several initiatives are already in process in an attempt to address the situation. These include communication with the European Medicines Agency (EMEA) to contribute to the process of and guidelines for the approval of new AEDs, the development of European guidelines for the treatment of status epilepticus, and harmonizing the availability of and indications for AEDs across Europe. However, there is a need for further action to raise the profile of epilepsy within the European community, to reduce the stigma, enhance policy making and services for individuals with epilepsy, and improve access to care. This includes access to appropriate specialist care, medication, and surgery. The need for the promotion of existing and collaborative research across the region is also emphasized. The ILAE Commission for European Affairs has prepared a position paper on research priorities for use as a tool for communication with regard to further European support. I confirm that I have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines. I am currently Co-Chair Global Outreach Task Force ILAE and IBE. I have no conflicts of interest to disclose.