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Abstracts

Patient and Caregiver Perceptions of Acute Seizure Medications and the Rapid and Early Seizure Termination (REST) Approach: Qualitative Interviews

Abstract number : 1.317
Submission category : 4. Clinical Epilepsy / 4C. Clinical Treatments
Year : 2025
Submission ID : 759
Source : www.aesnet.org
Presentation date : 12/6/2025 12:00:00 AM
Published date :

Authors :
Kerrie-Anne Ho, PhD – UCB, Slough, United Kingdom
Tommi Tervonen, PhD – Kielo Research, Zug, Switzerland
Presenting Author: Jesus Eric Pina-Garza, MD – Centennial Children's Hospital, Nashville, TN, United States

Manuel Toledo Argany, MD, PhD – Epilepsy Unit, Neurology Department, Hospital Vall d´Hebron
Sheryl Haut, MD – Montefiore Medical Center, Albert Einstein Center, Albert Einstein College of Medicine, Bronx, NY, United States
Tanya Bhatia, MA – Patient Author, Chicago, IL, United States
Cecilia Jimenez-Moreno, PhD – Kielo Research, York, United Kingdom
Cédric Laloyaux, PhD – UCB, Brussels, Belgium

Rationale: Rapid and Early Seizure Termination (REST) is essential to prevent seizures becoming prolonged seizures (PS)/progressing in severity. However, among people with epilepsy (PwE) and caregivers, awareness of the REST paradigm and perceptions around acute (on-demand) medications are not well known.

Methods: Participants included PwE (aged ≥ 18 yrs, with a diagnosis of epilepsy/an epilepsy syndrome who had experienced ≥1 PS [≥ 2 min] in the prior 12 months) and caregivers (aged ≥ 18 yrs) of PwE (aged ≥ 12 yrs) from France/Italy/Poland/Spain/UK/US. They participated in 60-minute qualitative interviews regarding experiences with auras/epilepsy concepts/experience and unmet needs of acute medications/perceptions of the REST paradigm. Interviews were recorded and analyzed using formal qualitative coding techniques.

Results: 53 participants (18 PwE and 35 caregivers): 83% female and median (Q1, Q3) age was 47 (40, 51) years (Table 1). When asked about experiencing/observing auras or symptoms of seizure onset, 21 (40%) participants answered yes, for most or all seizures. Of 44 participants who reported experiencing auras, 30 (68%) were extremely/very confident that they could predict a seizure from auras. The most frequent description of PS given was longer than 5 minutes (32%), followed by longer than normal or usual (17%). Only 8 (15%) participants did not use/administer benzodiazepines (BZDs) as acute medication for PS. 23 (43%) participants would use/administer acute medication to stop a current or ongoing seizure, but 16 (30%) participants only sometimes, 11 (21%) rarely, and 9 (17%) had not used it in the last 12 months. Regarding unmet needs of current acute medication, 19 (36%) participants expressed a desire to change the mode of administration, and 12 (23%) mentioned improvement in effectiveness, mentioning: “First and foremost, it should work effectively and stop the seizure very quickly”, “it doesn’t always work”. Of 38 participants who answered questions on time for medication to act, 28 (74%) perceived a REST medication as quick/fast if it acts within the first minute of the seizure. Regarding the REST concept, 8 (15%) participants were aware of the concept; 39 (74%) mentioned perceived advantages (Table 2), with 31 (58%) mentioning relief with being able to act earlier before seizures progress; 28 (53%) mentioned a concern of REST, with side-effects mentioned by 20 (38%). Of 45 participants not currently following the REST approach, 30 (67%) perceived REST to be a feasible approach.

Conclusions: Most participants reported they could confidently predict seizures based on auras, and few did not use/administer BZDs as acute medication for PS. Unmet needs of current acute medication were effectiveness (being more effective/quicker to act) and mode of administration. Most felt that REST is a feasible approach and suggested it could provide relief with being able to act earlier before seizures progress. REST could be a beneficial and fast-acting approach to prevent seizures becoming PS/progressing in severity.

Funding: UCB-sponsored

Clinical Epilepsy