Challenges of determination in date of onset of infantile spasms: A tertiary health center’s experience

OBJECTIVE: Initiation of first-line treatment of infantile spasms (IS) within 1 week of onset is standard of care due to effect of delays on outcomes. Date of onset (DOS) is therefore important for quality monitoring and prognostication. We compared patients with clear DOS to those that could not be estimated to within 1 week, as well as reasons for unclear DOS.

METHODS: Authors conducted a retrospective chart review including all children with initial IS diagnosis at a single center between 2019-2022. Four reviewers independently collected information regarding DOS to verify accuracy.

RESULTS: DOS could be estimated to the nearest week in 50% (49/98) and within one month in 78% (77/98). Parental (21/49), physician (14/49), and patient-related (24/49), factors contributed to the difficulties in estimating the DOS to the nearest week; in 12/49 (24%) there were multiple factors. Inadequate documentation contributed in 10% (5/49).

CONCLUSIONS: We found that for approximately half of IS patients, determination of DOS nearest week was not possible. We propose interventions that could lead to improvement in DOS determination, thereby decreasing delays to treatment and quality monitoring.
Keywords: infantile spasms, diagnosis, diagnostic delay