• Kathleen L Meert, Beth S Slomine, James R Christensen, Russell Telford, Richard Holubkov, J Michael Dean, Frank W Moler, and Therapeutic Hypothermia after Pediatric Cardiac Arrest Trial Investigators.
• 1Children's Hospital of Michigan, Detroit, MI. 2Department of Pediatrics, Wayne State University, Detroit, MI. 3Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD. 4Department of Pediatric Rehabilitation, Kennedy Krieger Institute, Baltimore, MD. 5Johns Hopkins University, Baltimore, MD. 6Department of Pediatrics, University of Utah, Salt Lake City, UT. 7Department of Pediatrics and Communicable Diseases, University of Michigan, Ann Arbor, MI.
• Pediatr Crit Care Me. 2016 Jun 1; 17 (6): 498-507.

ObjectivesTo describe family burden among caregivers of children who survived out-of-hospital cardiac arrest and who were at high risk for neurologic disability and examine relationships between family burden, child functioning, and other factors during the first year post arrest.DesignSecondary analysis of data from the Therapeutic Hypothermia after Pediatric Cardiac Arrest Out-of-Hospital trial.SettingThirty-six PICUs in the United States and Canada.PatientsSeventy-seven children recruited to the Therapeutic Hypothermia after Pediatric Cardiac Arrest Out-of-Hospital trial who had normal prearrest neurologic functioning and were alive 1 year post arrest.InterventionsFamily burden was assessed using the Infant Toddler Quality of Life Questionnaire for children less than 5 years old and the Child Health Questionnaire for children 5 years old or older at baseline (reflecting prearrest status), 3 months, and 12 months post arrest. Child functioning was assessed using the Vineland Adaptive Behavior Scale II, the Pediatric Overall Performance Category, and Pediatric Cerebral Performance Category scales and caregiver perception of global functioning.Measurements And Main ResultsFifty-six children (72.7%) were boys, 48 (62.3%) were whites, and 50 (64.9%) were less than 5 years old prior to out-of-hospital cardiac arrest. Family burden at baseline was not significantly different from reference values. Family burden was increased at 3 and 12 months post arrest compared with reference values (p < 0.001). Worse Pediatric Overall Performance Category and Pediatric Cerebral Performance Category, lower adaptive behavior, lower global functioning, and higher family burden all measured 3 months post arrest were associated with higher family burden 12 months post arrest (p < 0.05). Sociodemographics and prearrest child functioning were not associated with family burden 12 months post arrest.ConclusionsFamilies of children who survive out-of-hospital cardiac arrest and have high risk for neurologic disability often experience substantial burden during the first year post arrest. The extent of child dysfunction 3 months post arrest is associated with family burden at 12 months.

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