Abstract Details

Title Loss of Productivity, Seizure Worry, and Patient and Caregiver Quality of Life Associated with Prolonged Seizures: Results from a Global Real-world Point-in-time Study

Topic Epilepsy/Clinical Neurophysiology (EEG)

Presentation(s) P4 - Poster Session 4 (8:00 AM-9:00 AM)

Poster/Presentation
Number 11-008

Objective Describe loss of productivity/seizure worry/quality of life associated with prolonged seizures (PS) among patients with epilepsy (PwE; aged ≥12 years who received a stable regimen of antiseizure medication and experienced ≥1 PS [lasting ≥2 minutes/longer than their normal seizures] in the prior 12 months) and their caregivers.

Background Seizures can become prolonged or progress in severity to convulsive seizures, seizure clusters, and status epilepticus. Such seizures can be associated with loss of productivity and a lower quality of life.

Design/Methods Analyses of PwE/caregiver self-reported data from France/Germany/Italy/Spain/US/China/Japan, drawn from Adelphi’s PS Disease Specific Programme™ (DSP), a real-world, point-in-time study (March 2023-February 2024). PwE/caregivers completed questionnaires: WPAI/self-report of seizure worry (0-10 scale; 10=“worry all the time”)/QOLIE-10-P/EQ-5D-5L/self-report of health condition developing/worsening.

Results 515/286 PwE/caregivers completed self-report forms. During the prior 7 days, PwE/caregivers missed a mean (SD; median [Q1-Q3]) of 2.9 (8.71; 0 [0-2.0])/2.6 (5.10; 0 [0-4.0]) work hours due to problems with their/their PwE’s PS (n=196/n=107); 79% (n=181/229)/94% (n=157/167) and 88% (n=438/498)/96% (n=270/282) reported that their/their PwE’s PS had affected work productivity, and their ability to perform normal daily activities, respectively. During the prior 3 months, PwE/caregivers reported being more worried about the occurrence of their/their PwE’s next PS than the next non-PS (PwE/caregiver self-reported seizure worry: PS median [Q1-Q3]: 6.5 [4.0-8.0], n=426/7.0 [4.0-8.0], n=276; non-PS: 5.0 [3.0-7.0], n=425/6.0 [4.0-8.0], n=277). EQ-5D-5L anxiety/depression: 58% of PwE (n=292/506) were at least slightly anxious/depressed. QOLIE-10-P question 9: 17% of PwE (n=86/505) reported being very fearful of having a fit during the next 4 weeks. 24% of caregivers (n=62/263) reported a health condition developing/worsening due to caring for a PwE with PS.

Conclusions PS affected PwE and their caregivers’ productivity/ability to perform daily activities, with both worried about occurrence of the next PS. PS have a negative impact on PwEs’ anxiety/depression, and may induce/worsen caregiver health conditions.

Authors/Disclosures
Paula Ferraris (CEREBRO SPAIN BIDCO, S.L.) PRESENTER	Mrs. Ferraris has received personal compensation for serving as an employee of UCB.
Eugen Trinka	Eugen Trinka has received personal compensation in the range of $500-$4,999 for serving as a Consultant for UCB. Eugen Trinka has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Eisai. Eugen Trinka has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Bial. Eugen Trinka has received personal compensation in the range of $500-$4,999 for serving as a Consultant for GW Pharmaceuticals. The institution of Eugen Trinka has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Rapport. The institution of Eugen Trinka has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Abbott. The institution of Eugen Trinka has received personal compensation in the range of $500-$4,999 for serving on a Scientific Advisory or Data Safety Monitoring board for UCB. Eugen Trinka has received research support from European Union. Eugen Trinka has received publishing royalties from a publication relating to health care.
Matthew Walker, MBBS, PhD, FRCP	Prof. Walker has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for EpilepsyGtx. The institution of Prof. Walker has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for Angelini. The institution of Prof. Walker has received personal compensation in the range of $500-$4,999 for serving on a Speakers Bureau for UCB pharma. Prof. Walker has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for Sage. Prof. Walker has received personal compensation in the range of $500-$4,999 for serving as an Expert Witness for Pfizer. Prof. Walker has stock in EpilepsyGtx. The institution of Prof. Walker has received research support from MRC. The institution of Prof. Walker has received research support from MRC. The institution of Prof. Walker has received research support from Epilepsy Research Institute. The institution of Prof. Walker has received research support from NIHR. Prof. Walker has received intellectual property interests from a discovery or technology relating to health care.
Reetta Kalviainen, MD (University of Kuopio)	No disclosure on file
John M. Stern, MD, FAAN	Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for UCB Pharma. Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for SK Life Science. Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Neurelis. Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving as a Consultant for Ceribell. Dr. Stern has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Jazz Pharma. Dr. Stern has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for LivaNova. Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for Neurelis. Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for LivaNova. Dr. Stern has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Sunovion. Dr. Stern has received personal compensation in the range of $5,000-$9,999 for serving on a Speakers Bureau for Jazz. Dr. Stern has received personal compensation in the range of $10,000-$49,999 for serving on a Speakers Bureau for SK Life Sciences. Dr. Stern has received personal compensation in the range of $500-$4,999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for MedLink Neurology. Dr. Stern has stock in DEARhealth. Dr. Stern has stock in Ceribell. Dr. Stern has received publishing royalties from a publication relating to health care. Dr. Stern has received publishing royalties from a publication relating to health care. Dr. Stern has received publishing royalties from a publication relating to health care. Dr. Stern has received publishing royalties from a publication relating to health care.
Lawrence J. Hirsch, MD, FAAN (Yale University Comprehensive Epilepsy Center)	Dr. Hirsch has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for Ceribell. Dr. Hirsch has received personal compensation in the range of $500-$4,999 for serving as a Consultant for marinus. The institution of Dr. Hirsch has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant for UCB. Dr. Hirsch has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Natus. Dr. Hirsch has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Neurelis. Dr. Hirsch has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Eisai. Dr. Hirsch has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Rapport Therapeutics. Dr. Hirsch has received publishing royalties from a publication relating to health care. Dr. Hirsch has received publishing royalties from a publication relating to health care. Dr. Hirsch has received personal compensation in the range of $5,000-$9,999 for serving as a Speaker; Faculty for Fellows' training course with Neuropace. Dr. Hirsch has received personal compensation in the range of $500-$4,999 for serving as a Speaker with Natus.
Alexander J. Gillespie	Mr. Gillespie has nothing to disclose.
Laura E. Le Brocq	Miss Le Brocq has nothing to disclose.
Cedric Laloyaux, PhD (UCBMedical Affairs Center of Expertise)	Dr. Laloyaux has received personal compensation for serving as an employee of UCB.
Olaf Radunz, MSC	Mr. Radunz has received personal compensation for serving as an employee of UCB Pharma GmbH.
Jessica C. Wilson, PhD	Dr. Wilson has received personal compensation for serving as an employee of UCB. Dr. Wilson has stock in UCB.

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