Preferencje opiekunów i ich potrzeby szkoleniowe w podawaniu leków ratunkowych przy przedłużających się drgawkach u dzieci i młodzieży z epilepsją: Wyniki badania międzynarodowego
Caregiver preferences and training needs in the administration of rescue medication for prolonged convulsive seizures in children and adolescents with epilepsy: Results from a multinational survey
W skrócie
Badanie przeprowadzone wśród opiekunów dzieci z epilepsją z siedmiu krajów europejskich pokazało, że większość preferuje lek ratunkowy podawany do policzka (midazolam) zamiast innych sposobów, ponieważ jest łatwiejszy w użyciu i bardziej skuteczny. Niestety aż 44% opiekunów nigdy nie otrzymało właściwego szkolenia z tego zakresu, a ci którzy zostali wyszkoleni, chcą uczyć się poprzez bezpośredni kontakt z instruktorem. Wyniki wskazują na potrzebę lepszych i ustandaryzowanych programów szkoleniowych dla opiekunów dzieci z epilepsją.
Oryginalny abstract (angielski)
PURPOSE: This multinational survey explored caregivers' preferences and training needs regarding the administration of rescue medication for prolonged convulsive seizures in children and adolescents with epilepsy across 7 European countries. METHODS: A total of 68 caregivers of children with epilepsy (aged 6 months to 18 years) who had experienced a prolonged convulsive seizure in the past 12 months completed an anonymous survey in 2024. The survey assessed caregiver preferences and satisfaction with buccal, nasal, or rectal rescue medication, quality of life (QoL), valued medication attributes, and training experience. Intranasal formulations were not consistently available across countries during the study period. RESULTS: Most caregivers (80.9%) preferred buccal over rectal or nasal administration, and satisfaction was higher among users of buccal midazolam compared with rectal diazepam. This preference aligned with a positive impact on patients' and caregivers' QoL. Caregivers rated ease of administration as the most important attribute of rescue medication (mean: 4.8/5), followed by effectiveness in stopping seizures (mean: 4.1/5). Despite their critical role, 44.1% had received no specific training; among those trained, 62.2% preferred face-to-face sessions. Training satisfaction was higher among caregivers who administered buccal midazolam (mean: 8.3/10; standard deviation [SD]: 2.4) compared with those using rectal diazepam (mean: 5.3/10; SD: 3.3). CONCLUSION: This survey underscores a strong caregiver preference for buccal midazolam in pediatric out-of-hospital settings. However, caregiver training remains a substantial unmet need, and standardized programs could improve preparedness for managing prolonged seizures. These findings reinforce the importance of integrating caregiver perspectives to optimize emergency pediatric epilepsy care.