Kerrie-Anne Ho, PhD, Patient Preference Lead at UCB, discusses preferences and perceptions of acute seizure medications.
Data from interviews with people with seizures (PwS) and caregiver interviews were presented at the American Academy of Neurology (AAN) 2026 Annual Meeting.
Patient and Caregiver Perceptions of Acute Seizure Medications and the Rapid and Early Seizure Termination (REST) Approach: Qualitative Interviews
The objective of this study was to assess understanding of the awareness of the Rapid and Early Seizure Termination (REST) paradigm and perceptions around acute (on-demand) medications among PwE and caregivers. REST is essential in preventing seizures from becoming prolonged seizures and progressing in severity.
A total of 53 participants (18 PwE, 35 caregivers) participated in 60-90-minute qualitative interviews regarding experiences with auras/epilepsy concepts/experience and unmet needs of acute medications/perceptions of REST. Of 44 participants who reported experiencing auras, 68% were extremely/very confident that they could predict a seizure from auras. The most frequent description of prolonged seizures given was longer than 5 minutes. Only 13% of participants did not use/administer benzodiazepines as acute medication for prolonged seizures. Regarding acute medication, 36% of participants desired to change the mode of administration and 23% wanted improved effectiveness.
53% of respondents perceived REST medication as quick/fast if it acts within the first minute of the seizure and 15% were aware of the REST concept. Of 45 participants not currently following the REST approach, 67% perceived REST to be feasible.
To read the abstract, click here.
Patient and Caregiver Preferences for Acute Seizure Medications: A Quantitative Survey
The objective of this study was to explore the preferences of PwE and caregivers on attributes of acute (on-demand) seizure medications.
PwE aged 18 years and older who had experienced 1 or more prolonged seizures of 2 minutes or longer in the past 12 months and caregivers of PwE aged 12 years and older were included in the survey.
A total of 135 adult PwE and 239 caregivers participated (n=374). Overall, 46% of participants reported generalized or bilateral/tonic-clonic as their most common seizure type, 52% reported 3-5 seizures/month on average, and 57% reported an average duration of 1 to 4 minutes for the most common seizure type over the past 12 months. 57% of participants reported using oral acute medication for prolonged seizures.
The survey noted that all attributes significantly influenced treatment preferences, with the most important being time to seizure cessation and mode of administration. Nasal spray and single-use inhaler were most preferred, whereas rectal was least preferred. Participants preferred treating early in the seizure and faster-acting medications. Willingness-to-wait exercise showed that 88% of participants would be willing to wait 30 seconds (the minimum time proposed) to administer acute seizure medication.
To read the abstract, click here.
To learn more about DEEs and other rare neurological disorders, visit https://checkrare.com/diseases/neurology-nervous-system-diseases/
