Report: 40% of European epilepsy patients receiving inadequate care

The research reveals that, although 70% of people with epilepsy are likely to respond to treatment, around 40% across Europe - and up to 90% in some areas - are not receiving optimal care.

In addition, the decreased capacity in healthcare systems, inequitable distribution of resources and lower prioritization of epilepsy care were also found to result in direct, higher costs to healthcare systems and diminish the quality of life for these patients.

Part of the ongoing Headway initiative, Angelini Pharma and The European House – Ambrosetti’s “Headway – A new roadmap in Brain Health: Focus Epilepsy” comprised a multi-stakeholder and multi-dimensional analysis from various sectors such as healthcare, private industry, academia and government while also gathering personal perspectives from patient associations, clinicians and policy makers.

The report results also indicate focus on capacity building, including more clinical and economic research on the burden of epilepsy, developing research tools and data collection methods and creating training and mentoring opportunities for stakeholders – would help encourage higher responsiveness to health and socioeconomic-related needs for people living with the condition.

Additionally, harmonization from a cross-country policy and guidelines perspective would help ensure a 'holistic' European approach and streamline the implementation of the Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders (IGAP) across these countries.

Ongoing education and awareness building within the general public and media remain a key pillar to drive more inclusive and responsive working, educational and social environments.

Jacopo Andreose, CEO of Angelini Pharma, said: “Today’s Headway Report not only demonstrates how much more we need to do to improve the state of epilepsy care in Europe, but also that collaboration across industry, clinical and patient associations, academia and government is essential to bring epilepsy to the top of the public health agenda.”

“Although one of the most widespread chronic neurological diseases in Europe, only a few countries have implemented national plans to manage this condition and still fewer recognize it as a brain disorder. We are committed to continuing shedding light on the true burden of this disease for patients and healthcare systems in Europe.”

Elisa Milani, project coordinator and consultant at The European House, Ambrosetti, added: “Epilepsy has a profound impact on those living with this disease and research shows quality of life extends far beyond seizure control to nearly every aspect of everyday life, including stigma in social interactions, self-esteem, independence, memory, sleep and mental health.”

“We are proud of our work with Angelini Pharma to share the Headway platform, and hope this will encourage more investigation and dialogue around the many impacts of epilepsy and how we can give these patients a better chance at living life on their terms.”

Dr. Francesca Sofia, president at the International Bureau of Epilepsy, also noted that the report reaffirms the urgent need for the broader epilepsy community to collaborate around a shared ‘call to action’ to ensure better access to quality care.