PP07.13 – 2777: Disease characteristics and learning disabilities in a European survey of children with epilepsy who experience prolonged acute convulsive seizures

Abstract

Objective To survey epilepsy aetiology, seizure frequency, and educational needs in children with epilepsy who experience prolonged acute convulsive seizures (PACS). Methods Practices in Emergency and Rescue medication For Epilepsy managed with Community-administered Therapy 3 (PERFECT-3) was an international, cross-sectional, observational study. Eligible patients were non-institutionalized children with epilepsy (aged 3–16 years) who had experienced ≥1 PACS within the last 12 months and had current prescription(s) for PACS rescue medication. Investigators provided clinical assessments and patients' parents/guardians completed web-based questionnaires. Results A total of 286 patients were enrolled in Germany (n=92 [32.2%]), Italy (n=75 [26.2%]), Spain (n=77 [26.9%]) and the UK (n=42 [14.7%]). Their mean age was 8.9 years (standard deviation [SD], 3.8) and 54.9% were male. The median time since diagnosis was 4 years (range, 0–16). Epilepsy aetiology was genetic in 30.6%, structural in 29.9%, other/unknown in 37.7% and metabolic in 1.8% of patients. In the 12 months before enrolment, patients had experienced 1–400 PACS (median, 4; mean, 23.6 [SD, 59.8]); 54.9% experienced 1–5 and 9.8% experienced ≥51. Parents (n=258) reported that their children experienced PACS lasting >5 minutes daily (4.7%), weekly (10.2%), monthly (10.5%), every two (8.6%) or three (17.2%) months, or 2–3 times per year (44.9%). The majority of patients (52.7%) could not undertake typical day-to-day activities and most (76.9%) had learning disabilities. Of these, 28.2%, 41.7% and 30.1% had severe, moderate or mild learning disabilities, respectively. Only 42.0% of parents reported that their child attended mainstream school. Conclusions The frequency of PACS ranged widely in this European cross-sectional survey. The study confirmed that children with epilepsy who experience PACS often face learning disabilities and need specialist education. Study funded by ViroPharma (part of the Shire Group of Companies).