Supporting International Epilepsy Day 2020

Konrad Werhahn, Global Epilepsy Strategy
Posted by
Konrad Werhahn, Global Epilepsy Strategy
10-Feb-2020

Today is International Epilepsy Day, a day where people from around the world come together to raise awareness of epilepsy and the challenges faced by patients, their families and carers. Over 65 million people live with epilepsy worldwide yet despite this and the available treatments, public fear and misunderstanding about epilepsy persists and the treatment gap remains high. At UCB, we are proud to be sponsors of International Epilepsy Day and remain devoted to improving the lives of those affected by epilepsy around the globe. Read on to find out about UCB’s commitment to epilepsy and our current research on the treatment gap in new onset epilepsy.

In a  previous blog post, my colleague Cédric Laloyaux, Global Medical Lead, - Neurology, spoke about how UCB had embarked on a new global initiative aiming to improve real-world outcomes for people living with epilepsy. Since then, as part of the UCB Epilepsy Outcomes Project (EOP), the team has continued to collaborate with experts to assess the epilepsy treatment gap. One collaboration, the results of which were published in Neurology, was a retrospective study of newly diagnosed epilepsy patients in the U.S. and the effects the lack of treatment may have on health outcomes. This followed on from an initial editorial piece in The Lancet which highlighted the factors contributing to why people with epilepsy often don’t receive the care they require.

The retrospective analysis found that one-third of newly diagnosed epilepsy patients remained untreated up to three years after their diagnosis. Previous studies have focused on low-income nations and have reported treatment gaps of up to 95%, yet this study strongly suggests that the treatment gap in epilepsy is present not only in developing countries, but also high-income countries where antiepileptic drugs (AEDs) are readily available.

It was found that compared to treated patients, untreated epileptic patients are 20% more likely to encounter a medical event associated with epilepsy such as; burns, falls, fractures, motor accidents and suicidality. Unsurprisingly, patients not receiving treatment for their epilepsy were also at a greater than two-fold increased risk of hospitalizations, and emergency department visits, suggesting that untreated epilepsy results in medical events necessitating increased use of health care resources.

Given the impact on patient outcomes and healthcare resources, such a significant treatment gap should be seen as worrisome. As the authors conclude, the treatment gap in epilepsy is not a phenomenon confined to developing countries, but an issue that is also prominent in high-income nations, and one that needs to be addressed.

This collaboration is one of the first steps in the EOP initiative, which aims to identify and analyse communication gaps between patients and healthcare professionals about epilepsy and epilepsy treatments, factors leading to treatment gaps related to AED selection initiation, and epilepsy diagnosis in emergency departments. Identifying a gap in epilepsy treatment and assessing some of the reasons for this is one step towards improving access to care and quality of life for patients with epilepsy.

UCB remains committed to improving experiences for people with epilepsy and progress towards eradicating the impact of epilepsy around the world. Keep an eye out on UCB’s Twitter and Facebook pages for more insights on the epilepsy treatment gap.

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