Clinical paperLong-term function, quality of life and healthcare utilization among survivors of pediatric out-of-hospital cardiac arrest
Introduction
An estimated 8 in 100,000 children in North America experience an out-of-hospital cardiac arrest (OHCA) annually.1 Up to 13% survive to hospital discharge, and of those, only 6–20% have favorable neurologic function.1, 2, 3 While pediatric OHCA survival has improved over the past decade,3 these children remain at-risk of substantial long-term neurobehavioral morbidity.4
The American Heart Association emphasizes the need to address the long-term impacts of cardiac arrest on survivors.3 Data on long-term (>1 year after cardiac arrest) survivor outcomes are mixed. A secondary analysis of a randomized, controlled trial Therapeutic Hypothermia After Pediatric Cardiac Arrest Out-of-Hospital (THAPCA-OH) among children with post-arrest coma upon admission to the pediatric intensive care unit demonstrated that one-third of survivors discharged with severe neurologic impairment improved within the first year after cardiac arrest.4 However, several studies demonstrated high rates of special education enrollment, chronic symptoms, cognitive impairment, and emotional disabilities amongst survivors long-term.5, 6, 7 One recent study showed that, although 73% of survivors had good neurobehavioral outcome defined by Pediatric Cerebral Performance Category (PCPC) score of 1 or 2, almost 50% had lower IQ scores, worse attention, and slower processing speed two years post-cardiac arrest when compared to normative data.5 Data on survivor outcomes after 5 years post-arrest are limited.
The primary objectives of this study were to measure long-term (>1 year after cardiac arrest) outcomes in pediatric OHCA survivors to characterize survivors’ neurologic outcomes, functional status, survivor and family HRQL, survivor healthcare utilization, and barriers to accessing health services. We secondarily evaluated change in survivor neurologic outcome from hospital discharge to long-term follow-up.
Section snippets
Study design and participants
This was a cross-sectional study of children with OHCA who received post-arrest care in the pediatric intensive care unit (PICU) at the Children’s Hospital of Philadelphia (CHOP) between 2008–2018. This study was approved by the CHOP Institutional Review Board (IRB 16–013130). Caregivers and children age ≥18 years at follow-up provided verbal informed consent. Assent was obtained from children age ≥7 years at follow-up when appropriate.
Children were screened using an institutional cardiac
Results
Of the 210 OHCA survivors who survived to hospital discharge, 24 died prior to follow-up and nine were excluded (2 due to limited caregiver English proficiency and 7 due to placement in foster care). We attempted to contact 177 eligible families, of whom 102 were unable to be contacted/failed to maintain contact/or refused to participate after consenting, 28 declined, 3 had insufficient data, and 44 consented to study participation. PCPC data were incomplete for one consented survivor who was
Discussion
In this single-center, cross-sectional study, we assessed outcomes in a convenience sample of pediatric survivors from OHCA at a median of 5.6 years post-arrest. More than half of survivors had a favorable outcome at discharge and long-term follow-up. Not surprisingly, children with unfavorable outcome at hospital discharge had worse neurologic function at long-term follow-up. However, some children who had unfavorable outcome at discharge improved over time while others with a favorable
Conclusions
When evaluating long-term outcomes in a cohort of all OHCA cardiac arrest survivors admitted to a PICU, survivors with unfavorable outcome at discharge have more impaired function multiple years post-arrest. Survivors with a favorable outcome may also experience impairments and significant healthcare needs not fully captured by the PCPC. Pediatric OHCA survivors may benefit from close follow-up and partnership with caregivers to ensure optimal long-term recovery and access to services to
Disclaimer Statement
The views expressed in the submitted manuscript are those of the authors alone and not those of the Children’s Hospital of Philadelphia or the University of Pennsylvania. Dr. Nadkarni serves on the Executive Committee of the Society of Critical Care Medicine. The views expressed are the author’s alone, and not those of the Society of Critical Care Medicine.
Sources of support
Children’s Hospital of Philadelphia Division of Critical Care Medicine, Pediatric Critical Care Medicine Endowed Chair.
Declaration of Competing Interest
The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.
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Topjian and Pinto are co-senior authors.