UCB presents new data demonstrating quality-of-life impacts for epilepsy patients and caregivers at AAN 2026 meeting

• Substantial impact of sleep disturbances: New interim caregiver survey results found that a quarter of patients with developmental and epileptic encephalopathies (DEEs) experienced daily sleep disturbances, leading to a negative impact on activities of daily living and communication.¹
• Impact of prolonged seizures: Results from global real-world data illustrate the impacts of prolonged seizures on both people living with epilepsy and their caregivers’ ability to perform daily activities, with 88% and 96% respectively, reporting that seizures impacted their ability to perform normal daily activities.^2,3 
• Benefits of persistence: Claims analysis data evaluating treatment persistence with FINTEPLA^®▼ ^4,5 (fenfluramine) for people in the U.S. living with Lennox-Gastaut syndrome (LGS) show reductions in healthcare resource utilization and antiseizure medication claims for patients with treatment persistence at 6 and 12 months.⁶

Brussels (Belgium) 15 APRIL 2026, 07:00 (CEST) – UCB (Euronext Brussels: UCB), a global biopharmaceutical company, today presented new global, real-world, patient-centric data, including data from a study assessing the impacts on quality of life that developmental and epileptic encephalopathies (DEEs) have on individuals and caregivers, as well as the impact of living with prolonged seizures on patients and their caregivers. The company is presenting 21 abstracts in total from its innovative neurology portfolio (14 epilepsy abstracts, and seven rare abstracts including six myasthenia gravis (MG) abstracts) at the American Academy of Neurology (AAN) 2026 Annual Meeting (April 18-22, 2026).  

New interim survey results demonstrated the impacts of sleep disturbances on activities of daily living (ADL) and communication¹

Caregivers of people living with DEEs (n=489) – rare, severe, and lifelong epileptic syndromes  –  completed an anonymous 63-question survey, providing information on sleep disruptions and their impact on activities of daily living (ADLs) and communication. 

• Results demonstrated that 9.6% of patients’ (n=47) sleep was “unpredictable with no typical pattern,” while daily disruptive sleep was experienced by over a quarter of patients (27.0%; n=132). 
• These sleep disturbances in approximately a quarter of patients (24.5%; n=120) were associated with temporary loss of one or more ADL and temporary loss of communication (21.5%; n=105), further underlining the impacts of sleep disruptions for these patients and their caregivers.

“Many people living with developmental and epileptic encephalopathies or DEEs experience significant sleep problems and behavioral difficulties, which can have real and long-lasting impacts on quality of life,” said Andrea Wilkinson, Global Head of Patient Engagement & Advocacy, Epilepsy & Neuromuscular, and lead author of the study. “These results demonstrate the clear relationship between disrupted sleep and temporary losses in daily function and communications, underscoring the importance of addressing disease impacts beyond seizure alone and continuing to prioritize sleep as an endpoint in future research to improve outcomes.”

Prolonged seizures impacted both patients and their caregivers’ ability to perform daily activities with negative impacts on anxiety and depression^2,3

Self-reported data from both people living with epilepsy and their caregivers illustrated the impacts of prolonged seizures.

• 88% of patients (n=438/498) and 96% of caregivers (n=270/282) reported that these seizures had impacted their ability to perform normal daily activities.
• Among patients (n=196) and caregivers (n=107), an average of 2.9 and 2.6 work hours per week, respectively, were missed due to prolonged seizures. Additionally, 79% of patients (n=181/229) and 94% of caregivers (n=157/167) reported that prolonged seizures negatively impacted their work productivity.
• Seizure worry also impacted both patients and caregivers, with over half of patients (58%; n=292/506) reporting they were at least slightly anxious/depressed, and almost a quarter (24%; n=62/263) of caregivers reporting a health condition developing or worsening due to their care of a patient with prolonged seizures.

A U.S. subgroup analysis of 545 patients with epilepsy who experienced ≥1 prolonged seizure (PS) evaluated seizure events, treatment use, healthcare resource utilization (HCRU), and overall disease burden. In this subgroup, 70% of patients were currently prescribed a rescue medication, 67% had a seizure action plan in place, and a higher proportion of patients required HCRU for their PS than their non-PS events. Seizure clusters and injuries were more commonly experienced among patients with PS events compared with non-PS events (14% vs. 9% and 21% vs. 17%, respectively), underscoring the need for additional treatment options to help prevent progression to more severe seizure states.

Treatment persistence with fenfluramine led to reductions in Healthcare Resource Utilization and antiseizure medication burden for people living with LGS in the U.S.⁶

Results from a retrospective analysis of people living with LGS in the U.S. using the Komodo U.S. healthcare claims database demonstrated that initiating fenfluramine was associated with reductions in HCRU and antiseizure medication (ASM) burden. 

• Among patients with 12 months of fenfluramine continuous claims data before and after initiation (n=148), all-cause inpatient hospitalization claims decreased (mean 4.0 pre vs. 3.1 post; p=0.04), alongside reductions in seizure-related inpatient hospitalization claims (−23.6%; p=0.04), all-cause emergency room (ER) visit claims (−42.4%; p<0.01), seizure-related ER visit claims (−46.4%; p<0.01), and ambulance use claims (−61.8%; p<0.01). 
• Patients who met the primary endpoint also experienced decreases in all ASM claims (−9.3%; p<0.01) and the average number of unique ASMs (−12.2%; p<0.01). 
• In a broader cohort evaluating treatment persistence (n=544) with no fenfluramine gaps >90 days, fenfluramine persistence was 73% at 6 months and 61% at 12 months and the cohort treated with fenfluramine had a greater disease severity as indicated by number of comorbidities and HCRU, compared to the non-fenfluramine-treated cohort. 

“Families living with LGS manage far more than seizures alone. Fewer emergency room visits, hospitalizations, and ambulance use can translate into less disruption, fewer crises and more stability for families,” said Hugo Xi, Head of US Medical Neurology. “Seeing strong treatment persistence over time also reinforces that this therapy is fitting into real lives.”