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
Eugen Trinka1, Matthew Walker2, Reetta Kalviainen3, John Stern4, Lawrence Hirsch5, Alexander Gillespie6, Laura LeBrocq6, Cedric Laloyaux7, Olaf Radunz8, J Claire Wilson9
1Department of Neurology, Neurocritical Care, and Neurorehabilitation, Member of European Reference Network EpiCARE, Center for Cognitive Neuroscience, Christian Doppler University Hospital, Paracelsus Medical University, Salzburg, Austria; Neuroscience Institute, Center for Cognitive Neuroscience, Christian Doppler University Hospital, Paracelsus Medical University, Salzburg, Austria; Institute of Public Health, Medical Decision Making and Health Technology Assessment, University for Health Sciences, Medical Informatics and Technology, Hall in Tirol, Austria, 2UCL Queen Square Institute of Neurology, Department of Clinical & Experimental Epilepsy, UCL, UK, 3Department of Neurology, School of Medicine, University of Eastern Finland and Kuopio Epilepsy Center, Kuopio, Finland, 4Department of Neurology, University of California, Los Angeles, CA, USA, 5Comprehensive Epilepsy Center, Department of Neurology, Yale University, New Haven, CT, USA, 6Adelphi Real World, Bollington, UK, 7Medical Affairs Center of Expertise, UCB, Brussels, Belgium, 8UCB, Monheim am Rhein, Germany, 9UCB, Slough, UK
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.
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