Ocena wiedzy i postaw opiekunów wobec padaczki u dzieci podczas pobytu w specjalistycznej klinice monitorowania padaczki
Assessment of caregiver knowledge and attitudes toward pediatric epilepsy during an epilepsy monitoring unit admission
W skrócie
Badanie wykazało, że opiekunowie dzieci z padaczką przebywających krótko w specjalistycznej klinice obserwacyjnej zwiększyli swoją wiedzę na temat choroby i ulepszyili swoje nastawienie do niej. Wymiana informacji z lekarzami podczas codziennych wizyt przy łóżku pacjenta przyczyniła się do tego, że opiekunowie lepiej rozumieją bezpieczeństwo dziecka podczas ataków i opcje leczenia. Badacze uważają, że sformalizowane programy edukacyjne mogą jeszcze bardziej poprawić wiedzę i postawy opiekunów w takich klinikach.
Oryginalny abstract (angielski)
BACKGROUND: Caregiver knowledge and attitudes are critical to effective pediatric epilepsy management, yet misconceptions about seizure safety, treatment options, and long-term outcomes remain common. The Epilepsy Monitoring Unit (EMU) provides a unique opportunity for real-time education during diagnostic evaluation and clinical care. OBJECTIVE: To assess changes in epilepsy-related knowledge and attitudes among caregivers of pediatric patients during a short-term EMU admission. METHODS: This prospective pre-post observational study enrolled caregivers of children aged 2-18 years admitted to the EMU at Nemours Children's Hospital for epilepsy-related diagnostic evaluation or management. Caregivers completed the 16-item Epilepsy Knowledge Scale (EKS) and 14-item Epilepsy Attitude Scale (EAS) shortly after admission and again prior to discharge in English or professionally translated Spanish. Routine education occurred during bedside rounds without a structured study intervention. Paired analyses were used to compare pre- and post-stay scores, and item-level changes were assessed using exact McNemar tests, with Benjamini-Hochberg false discovery rate correction as a sensitivity analysis. RESULTS: Of 63 caregivers approached, 57 completed both pre- and post-surveys, yielding a response rate of 90.5 %. The mean EMU length of stay was 1.74 ± 1.29 days. Mean EKS scores increased from 7.33 ± 2.02 at baseline to 10.07 ± 1.83 at discharge, representing a mean increase of 2.74 points (95 % CI: 2.03-3.44p < 0.001) and an effect size of Cohen's d = 1.03. Median EAS scores increased from 39 (IQR: 35, 41) to 40 (IQR: 37, 42; p < 0.001; r = 0.48). Item-level results were mixed, and four of 16 EKS items remained significant after false discovery rate correction; no individual EAS item remained significant after correction. CONCLUSIONS: Caregiver knowledge and overall attitude scores improved during a brief pediatric EMU admission. Because this was an uncontrolled observational study without a standardized educational intervention, the observed changes cannot be attributed specifically to routine education. Test-retest effects and language-related measurement differences are also possible. These findings support prospective evaluation of structured, standardized caregiver education integrated into EMU care.