Addressing disparities and stigma in epilepsy
New report highlights the disparities in epilepsy care across Europe and emphasizes the role stigma plays in the lives of those with epilepsy.
Epilepsy is a chronic neurological disorder that affects around 50 million people worldwide, making it one of the most common neurological disorders. Despite this, a lack of awareness and stigma is associated with the disease, which, as a new report describes, has a detrimental impact on the lives of those affected by epilepsy. The Headway report, led by The European House – Ambrosetti (Milan, Italy), an Italian Think Tank, and Angelini Pharma (Rome, Italy), outlines a number of priority areas that can be addressed to help reduce the burden of epilepsy across Europe.
The report identified that a critical issue facing people with epilepsy is a lack of access to quality care. Differences in European healthcare systems, variable levels of urbanization and a number of socioeconomic factors, all contribute to disparities in the availability, accessibility and quality of care provided to those with epilepsy. An average of 40% of people miss out on treatment across Europe; however, this figure is as high as 90% in some areas of Europe. The gap emphasizes the need for more cost-effective epilepsy care programs to be rolled out across Europe.
The report also identified stigma – from the public but also healthcare professionals – as a key issue. Of the adults surveyed for the report, 51% reported feeling stigmatized, 18% of which highly so. This stigma was found to contribute to poor mental and physical health amongst those with epilepsy, with some people reporting that they delayed seeking appropriate healthcare because of it. The causes of stigma vary, but in general, the report found that a poor understanding and a lack of public awareness of the disease were driving factors.
“The Headway epilepsy report highlights the detrimental impact that stigma associated with epilepsy continues to have across Europe,” commented Francesca Sophia, President of the International Bureau of Epilepsy. “Identifying the scope and nature of this problem is a first move in changing attitudes and addressing the social marginalization encountered by many people who experience seizures.”
The report also identified diagnostic delays and misdiagnosis as areas to address, as well as outlining the impacts of the COVID-19 pandemic on epilepsy care and the epilepsy community.
Although developments in epilepsy research over the past 20 years have resulted in over 14 new anti-seizure medicines being developed, continued research is needed to further progress. The report identified several barriers to successful research, including a lack of consistent epidemiological data, complicated regulatory processes, insufficient funding for research and cultural stigma. Overcoming these barriers could result in research that leads to faster diagnosis and better treatments.
“Epilepsy is still highly misunderstood in many countries. Creating a multidisciplinary, inter-European platform to stimulate dialogue and knowledge sharing around the most prominent issues in the healthcare sector, but also in workplaces, schools and society in general with the objective of contributing to reducing the burden of disease in Europe is a vital step,” commented Daniela Bianco (The European House – Ambrosetti).
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