Abstracts

Rationale: There is limited information on the interval (IN) from initial presentation of infantile spasms (IS) to diagnosis and initiation of first-line therapy. Our objective was to describe the period elapsed between detection of first IS, diagnosis and initiation of treatment. Methods: This is a prospective cohort study conducted at 22 centers participating in the Pediatric Epilepsy Research Consortium (PERC) across the US. Inclusion criteria: Patients newly diagnosed with IS (onset 0-18 months) who had an EEG showing abnormal inter-ictal pattern including irregular high amplitude background with multifocal spikes and slow waves or ictal pattern of a high-voltage slow wave followed by flattening, consistent with the diagnosis of IS. Exclusion criteria: Patients with no information on date of IS onset and patients diagnosed elsewhere and referred to the study center due to poor response to initial treatment. Data were kept in a REDCap © data base. Results: 244 patients with new onset IS [129 (53%) females] were enrolled (Table 1). The median (p25-p75) IN from the first recognized spasms to diagnosis was 13 days (4.5-32) while 26% of patients were diagnosed more than one month past their first recognized spasms. This IN did not significantly vary in children with public or private insurance (Wilcoxon, p=0.3). The IN was also not significantly greater in children who lived further away from the hospital site (Kruskal-Wallis, p=0.5). On the other hand, the history of seizures was associated with the IN to diagnosis; the IN is 9 days (4-28) with prior seizures and 19 days (7-43) without prior seizure, (Wilcoxon, p=0.008). The presence of cognitive or motor abnormality was also related to lengthening the IN: A median of 18 days (6-46) with cognitive delay vs. 6 days (2-18) with normal function (Wilcoxon, p<0.001), and 17.5 days (5.5-45.5) with motor delay vs. 6 days (3-18) with normal motor function (Wilcoxon, p<0.001). 189 patients received the first-line therapy, ACTH, vigabatrin, prednisone or prednisolone, as their first treatment for IS. The median IN between the onset of spasms and date of first-line treatment was 17 days (6-43). The delay from diagnosis of IS to initiation of the first-line therapy was a median of 1 day (0-3days). The distance to center (Wilcoxon, p=0.4) did not seem to be related to lengthening the IN to treatment. Rather, the insurance type (Wilcoxon, p=0.03) the presence of history of seizure (Wilcoxon, p=0.02) and the presence of motor (Wilcoxon test, p=0.005) or cognitive abnormality (Wilcoxon, p<0.001) were associated with delay in initiation of treatment (Figure 1). Conclusions: The IN between onset of detected IS and diagnosis was about 2 weeks and the IN between first recognized spasms and initiation of medical treatment was about 2.5 weeks, while 26% of patients were diagnosed > 1 month post-first recognized spasms. Distance factors do not seem to play a role in lengthening the time to receiving appropriate care; yet, public insurance, history of seizure, motor and cognitive abnormality were associated to delayed diagnosis and/or treatment.