Abstract, published in Epilepsia
Objective: To determine risk factors and causes for mortality during childhood in patients with infantile spasms (IS). The team describe the overall goals of care for those who died.
Methods: Researchers reviewed the charts of IS patients born between 2000 and 2011, focusing on potential risk factors for mortality, including cause, neurologic impairment, medication use, persistence of epileptic spasms, and comorbid systemic involvement. For patients who died, the team described cause of death and resuscitation status or end-of-life care measures.
Results: Of the 150 IS patients identified and followed over a 12 year period, 25 (17%) of them died, 13 before 5 years of age. Analysis demonstrated that developmental delay, identifiable cause, hormonal use for IS, persistence of epileptic spasms, treatment with multiple antiseizure medications, refractory epilepsy, respiratory system comorbidity, and the need for a feeding tube placed directly into the stomach were significant risk factors for mortality.
Significance: Mortality at this single-center IS cohort was 17%, and persistence of epileptic spasms and comorbid respiratory system disorders were the most important determinants of mortality. Early deaths were related to neurological impairments/comorbidities. SUDEP was more common in children who died after 5 years of age than in those who died younger than 5 years.