Purpose: The objective of this study was to delineate the long-term impact of pediatric convulsive status epilepticus (CSE) on health-related quality of life (HRQOL) in children recently diagnosed with epilepsy.
Methods: Children with newly-diagnosed epilepsy were recruited between 2004-2007 through a Canada-wide population-based study, the Health-Related Quality of Life Study in Children with Epilepsy Study (HERQULES). Eligible children were 4-12 years of age at epilepsy diagnosis; consequently, children with the more catastrophic syndromes and epileptic encephalopathies typically diagnosed at younger ages were ineligible. Participants were followed over 10 years, and neurologists identified those with CSE in the first two years after epilepsy diagnosis. HRQOL was self-reported by adolescents and young adults (AYAs) in the long-term, and reported by parents at multiple time points throughout the 10-year follow-up.
Results: A total of 204 AYAs were followed over the long-term, 12 of whom had a history of CSE. Parents of those with CSE reported poorer HRQOL in their children two years after the epilepsy diagnosis, (Cohen's d = 0.58, p = .037), though not at the 10-year follow-up (d = 0.28, p = .19). Results from AYAs' self-reports at the 10-year follow-up were similar, such that mean HRQOL scores were poorer for AYAs with CSE, though this difference was not significant (d = 0.39, p = .11). Results were similar when adjusting for HRQOL at the time of epilepsy diagnosis.
Conclusion: These findings suggest that compromised HRQOL in the short-term after CSE may resolve over the long-term. It will be important for future studies to focus on patient-reported outcomes in reporting the long-term sequelae of CSE.
Keywords: Children; Mental health; Patient reported outcome; Pediatric.
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