Long-term function, quality of life and healthcare utilization among survivors of pediatric out-of-hospital cardiac arrest

Background: Survival following pediatric out-of-hospital cardiac arrest (OHCA) has improved over the past 2 decades but data on survivors’ long-term outcomes are limited. We aimed to evaluate long-term outcomes in pediatric OHCA survivors more than one year after cardiac arrest. Methods: OHCA survivors <18 years old who received post-cardiac arrest care in the PICU at a single center between 2008–2018 were included. Parents of patients <18 years and patients ≥18 years at least one year after cardiac arrest completed a telephone interview. We assessed neurologic outcome (Pediatric Cerebral Performance Category [PCPC]), activities of daily living (Pediatric Glasgow Outcomes Scale-Extended, Functional Status Scale (FSS)), HRQL (Pediatric Quality of Life Core and Family Impact Modules), and healthcare utilization. Unfavorable neurologic outcome was defined as PCPC > 1 or worsening from pre-arrest baseline to discharge. Findings: Forty four patients were evaluable. Follow-up occurred at a median of 5.6 years [IQR 4.4, 8.9] post-arrest. Median age at arrest was 5.3 [1.3,12.6] years; median CPR duration was 5 [1.5, 7] minutes. Survivors with unfavorable outcome at discharge had worse FSS Sensory and Motor Function scores and higher rates of rehabilitation service utilization. Parents of survivors with unfavorable outcome reported greater disruption to family functioning. Healthcare utilization and educational support requirements were common among all survivors. Conclusions: Survivors of pediatric OHCA with unfavorable outcome at discharge have more impaired function multiple years post-arrest. Survivors with favorable outcome may experience impairments and significant healthcare needs not fully captured by the PCPC at hospital discharge.