P-ICECAP Extended

Project Summary Children who survive out-of-hospital cardiac arrest (OHCA) have high rates of disability and substantial caregiver burden 1-year after arrest, yet little is known about longer term child function, caregiver burden, or the factors influencing these outcomes. Prior studies of outcomes more than 1-year after OHCA used small/single-site samples, included only children presenting for clinical follow-up, or combined children with OHCA with those with in-hospital arrest despite very different characteristics. Our team capitalized on the first major multi-center clinical trial for children with OHCA (THAPCA-OH, 2009-2012) to yield the most detailed data on 1-year adaptive functioning outcomes. One year after OHCA, child functioning was divided across 3 disability levels (1/3 with no disability, 1/3 with mild/moderate disability, 1/3 with severe disability). Family burden was high in this cohort and associated with greater child disability. Almost a third of these children were <3 years of age (and >60% were <6 years of age) at the 1-year follow-up, and thus it remains unknown how these children will present at school age and later when additional cognitive and functional skills are expected to be present. We now have the unique opportunity to capitalize on the NHLBI/NINDS funded P-ICECAP (Pediatric Influence of Cooling duration on Efficacy in Cardiac Arrest Patients; NIH UH3HL159134/U24HL159132) which aims to identify the shortest cooling duration that provides the best 1- year outcome for survival and neurobehavioral function. P-ICECAP will enroll up to 900 children after OHCA with an expected 450 survivors with a wide range of outcomes. We propose this ancillary study to build upon P-ICECAP. Our overall objectives are to determine long-term adaptive functioning and neuropsychological performance in children and caregiver/family burden after pediatric OHCA and to identify risk/protective factors that could lead to interventions to promote improved outcomes. The aims are to 1a) detect trajectories in adaptive functioning from 3 months to 4 years after OHCA; 1b) detect neurocognitive impairments 2 to 4 years after OHCA in children >6 years of age at follow-up; 2) identify predictors of better child adaptive functioning 2 and 4 years after OHCA based on level of child disability at 1-year; 3) identify predictors of lower caregiver/family burden at 2 and 4 years after OHCA based on level of child disability at 1-year. We will enroll 350 participants after the 1-year P-ICECAP follow-up is complete and collect data centrally at Kennedy Krieger Institute via electronic interim surveys and 2- and 4-year telephone interviews. The subset of children >6 years with functional communication will participate in centralized, virtual neuropsychological evaluation.