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UCB Presents New Insights on Quality of Life for Epilepsy Patients at AAN 2026

At the recently held American Academy of Neurology (AAN) 2026 Annual Meeting, UCB, a global leader in biopharmaceuticals, unveiled revealing data detailing the quality-of-life concerns for individuals living with developmental and epileptic encephalopathies (DEEs) and their caregivers. This dataset highlights the importance of acknowledging the broader impacts of epilepsy beyond seizures themselves.

Sleep Disturbances and Their Effects

According to a new interim survey involving caregivers of patients with DEEs, a staggering 27% of individuals reported experiencing daily sleep disturbances. This disruption adversely affected their activities of daily living (ADLs) and communications. The survey included responses from 489 caregivers who detailed the extent to which sleep issues hindered daily functions and well-being. For instance, 9.6% of patients had sleep patterns that appeared unpredictable, translating into a significant challenge for both patients and their caregivers.

Andrea Wilkinson, UCB's Global Head of Patient Engagement and Advocacy, emphasized the need for increased focus on these sleep-related issues: "Many individuals living with DEEs face serious sleep problems and behavioral challenges that can detrimentally influence their quality of life. Addressing these concerns is just as crucial as managing the seizures themselves."

Prolonged Seizures and Their Consequences

Further data gathered from a broad group of epilepsy patients revealed the profound effects prolonged seizures have on daily living. An alarming 88% of patients and 96% of caregivers indicated that seizures interfered with their routine activities, leading to an average loss of nearly three work hours per week due to seizure events. This highlighted the burdens placed not only on the patients but also on their caregivers, who similarly reported heightened anxiety and depressive symptoms as a result of living with the consequences of prolonged seizures.

In a subgroup analysis of patients who endured a minimum of one prolonged seizure, 70% required a rescue medication, and 67% had a seizure action plan in place to manage the episodes, underscoring the critical need for ongoing support and treatment strategies.

Treatment Persistence and Its Benefits

UCB's findings also demonstrated that treatment persistence with FINTEPLA® (fenfluramine) offered significant advantages for patients diagnosed with Lennox-Gastaut syndrome (LGS). A retrospective analysis indicated there were marked reductions in healthcare resource utilization following sustained treatment—patients experienced fewer hospital visits and reduced reliance on emergency care.

This data illuminates the importance of maintaining treatment regimens for patients battling LGS, showing that effective medications can lead to fewer disruptions and promote a more stable quality of life for families impacted by the condition.

A Call for Further Research

UCB presented a total of 21 abstracts at AAN, encompassing findings related to epilepsy and rare diseases, including myasthenia gravis. These contributions underscore the company's commitment to improving outcomes for patients and caregivers alike by shedding light on the complex challenges they face.

In summary, the findings illustrate that the effects of epilepsy extend far beyond the physical seizures themselves—impacting sleep, emotional well-being, and overall quality of life. As experts continue to parse the relationship between epilepsy and various quality-of-life issues, it becomes imperative that future research prioritizes comprehensive treatment approaches that address these broader aspects. UCB is dedicated to pushing forward this agenda, ensuring that patients' voices remain central to the development of effective therapies in the future.