Patient and Caregiver Perceptions of Acute Seizure Medications and the Rapid and Early Seizure Termination (REST) Approach: Qualitative Interviews
Kerrie-Anne Ho1, Tommi Tervonen2, Jesus Eric Pina-Garza3, Manuel Toledo Argany4, Sheryl R Haut5, Tanya Bhatia6, Cecilia Jimenez-Moreno2, Cedric Laloyaux7
1UCB, Slough, UK, 2Kielo Research, Zug, Switzerland, 3Centennial Children's Hospital, Nashville, TN, USA, 4Vall d'Hebron University Hospital, Barcelona, Spain, 5Montefiore Medical Center, Bronx, NY, USA, 6Patient Author, Chicago, IL, USA, 7UCB, Brussels, Belgium
Objective:
To assess understanding of the awareness of the Rapid and Early Seizure Termination (REST) paradigm and perceptions around acute (on-demand) medications among people with epilepsy (PwE) and caregivers.
Background:
REST is essential to prevent seizures becoming prolonged seizures (PS)/progressing in severity.
Design/Methods:
Participants included PwE (aged ≥18 years, with a diagnosis of epilepsy/an epilepsy syndrome and ≥1 PS [≥2 minutes] in prior 12 months) and caregivers (aged ≥18 years) of PwE (aged ≥12 years) from France/Italy/Poland/Spain/UK/US. They participated in 60-90-minute qualitative interviews regarding experiences with auras/epilepsy concepts/experience and unmet needs of acute medications/perceptions of REST. Interviews were recorded/analyzed using formal qualitative coding techniques.
Results:
53 participants (18 PwE, 35 caregivers): 83% female and median (Q1, Q3) age 47 (40, 51) years. 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%). Only 7 (13%) participants did not use/administer benzodiazepines (BZDs) as acute medication for PS. Regarding acute medication, 19 (36%) participants desired to change the mode of administration; 12 (23%) wanted improved effectiveness: “First and foremost, it should work effectively and stop the seizure very quickly.” 28 (53%) respondents perceived REST medication as quick/fast if it acts within the first minute of the seizure. 8 (15%) participants were aware of the REST concept. Of 45 participants not currently following the REST approach, 30 (67%) perceived REST to be feasible.
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 medications were effectiveness and mode of administration. Most participants felt that REST is a feasible approach. REST could be a beneficial, fast-acting approach to prevent prolonged/more severe seizures.
Disclaimer: Abstracts were not reviewed by Neurology® and do not reflect the views of Neurology® editors or staff.