Components of Health-Related Quality of Life Most Affected following Pediatric Critical Illness

OBJECTIVES: To evaluate which individual elements of health-related quality of life contribute most to decline in overall health-related quality of life status following pediatric critical care. DESIGN: Retrospective cohort study. SETTING: Seattle Children's Hospital. PATIENTS: ICU patients age 1 month to 18 years admitted between December 2011 and February 2017. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We assessed health-relatedquality of life decline from baseline to postdischarge (median, 6 wk) and determined the individual items of the Pediatric Quality of Life Inventory Infant Scales (< 2 yr) and Generic Core Scales (2-18 yr) with the highest prevalence of decline. We used multivariable regression to estimate the risk of decline in each of seven thematic categories by patient age, baseline health status, diagnosis, Pediatric Risk of Mortality score, and ICU length of stay. Decline from baseline healthrelated quality of life occurred in 22.5% of 539 patients. Items most commonly affected for infants less than 2 years were primarily emotional (cranky/crying, sleep, and self-soothing). Children 2-18 years most commonly experienced declines in physical functioning (play/exercise, lifting, and pain). Across the entire cohort, declines in categories of energy (31.5%), activity (31.0%), sleep (28.0%), and fear (24.7%) were most commonly endorsed. Risk of decline in each category varied with patient age, medical complexity, and diagnosis. CONCLUSIONS: Deconditioning, sleep, fear, and pain are important targets for intervention to improve health-related quality of life outcomes for critically ill children.