In Europe, although around 70% of people with epilepsy respond to treatment, around 40% – and up to 90% in some areas – do not receive satisfactory care. This is what emerges from the report ‘Headway – a new roadmap in brain health: focus epilessia’. The results of the study were presented in Rome, on the occasion of an event organized at the Europa space, managed by the European Parliament office in Italy and by the European Commission representation in Italy, with the aim of promoting the sharing of experiences of various countries on the subject.
Headway, created in collaboration with Angelini pharma, provides an updated picture and further analysis of the results of previous years’ reports, providing overall data from all over Europe and individual countries, with the aim of identifying challenges and finding possible solutions that reduce the weight that epilepsy has on healthcare and society at large. The report demonstrated the persistence of a treatment gap for epilepsy care in Europe, with significant differences in access to care across countries.
In Italy, the prevalence of epilepsy is around 7.9 cases per 1,000 inhabitants, among the highest among the EU countries included in the report. In total, it is estimated that around 500,000 people are affected and that the direct annual cost to the health system is more than €900 million. In addition, every year, 1 in 1,000 patients die from sudep, sudden unexpected death in epilepsysudden and unexpected death.
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The problem of young people
The report also revealed that epilepsy is a condition that jeopardizes the integration of young patients even within the school environment. According to data, almost half of Italian teachers had a pupil with epilepsy in their class, but 64% of them did not receive adequate training on how to deal with possible epileptic seizures and only two thirds of the cases of pupils with epilepsy are reported to educational institutions, due to the difficulty of talking about this pathology.
Epilepsy has a major impact on those living with the disease and studies show that quality of life goes far beyond just seizure control and affects almost all aspects of daily life including stigma in social interactions, ‘esteem, independence, memory, sleep and mental health,” he explains Elisa Milani, project coordinator e consultant area Healthcare di the European house-Ambrosetti.
Although there is currently no cure for epilepsy, if correctly diagnosed, it can be managed with ad hoc innovative treatments that allow patients to have a satisfactory quality of life.
“It is of fundamental importance for patients and society to continue to stimulate the debate on brain health issues and on the daily lives of people with neurological diseases for the benefit of the whole system. The global impact of neurological diseases on society and health services , in fact, is very high. A diagnosis of epilepsy gives the individual a significant disability, which includes physical, psychological and social problems and it is, therefore, essential to find adequate solutions, improve knowledge and awareness of the disease to raise awareness and to break down prejudices and set priorities for the next 10 years,” he explained Nicholas Mirrorhead of the rare and complex epilepsies operating unit in the neuroscience department at the Bambino Gesù pediatric hospital in Rome.
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The results of the report indicate that a greater study on the clinical and economic effects of the disease, the development of research tools and data collection methods and the creation of training sessions would help to increase a greater capacity to respond to the health and socio-economic needs of the people with epilepsy.
Furthermore, the homogeneity of policy-makers’ guidelines at the transnational level would help ensure a holistic European approach and simplify the implementation of the global intersectoral action plan on epilepsy and other neurological disorders (igap) in these countries. Continuing education and public and media awareness remain a key pillar in fostering more inclusive and responsive working, educational and social environments.