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.