• Stefanie G Ames, Aline B Maddux, Lauren Burgunder, Huong Meeks, Erica L Fink, Kathleen L Meert, Matt S Zinter, Peter M Mourani, Joseph A Carcillo, Todd Carpenter, Murray M Pollack, Manvita Mareboina, Daniel A Notterman, Anil Sapru, and for the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN).
• Department of Pediatrics, University of Utah, Salt Lake City, UT.
• Pediatr Crit Care Me. 2024 Jun 1; 25 (6): 518527518-527.

ObjectivesTo describe family healthcare burden and health resource utilization in pediatric survivors of acute respiratory distress syndrome (ARDS) at 3 and 9 months.DesignSecondary analysis of a prospective multisite cohort study.SettingEight academic PICUs in the United States (2019-2020).PatientsCritically ill children with ARDS and follow-up survey data collected at 3 and/or 9 months after the event.InterventionsNone.Methods And MeasurementWe evaluated family healthcare burden, a measure of healthcare provided by families at home, and child health resource use including medication use and emergency department (ED) and hospital readmissions during the initial 3- and 9-month post-ARDS using proxy-report. Using multivariable logistic regression, we evaluated patient characteristics associated with family healthcare burden at 3 months.Main ResultsOf 109 eligible patients, 74 (68%) and 63 patients (58%) had follow-up at 3- and 9-month post-ARDS. At 3 months, 46 families (62%) reported healthcare burden including (22%) with unmet care coordination needs. At 9 months, 33 families (52%) reported healthcare burden including 10 families (16%) with unmet care coordination needs. At month 3, 61 patients (82%) required prescription medications, 13 patients (18%) had ED visits and 16 patients (22%) required hospital readmission. At month 9, 41 patients (65%) required prescription medications, 19 patients (30%) had ED visits, and 16 (25%) required hospital readmission were reported. Medication use was associated with family healthcare burden at both 3 and 9 months. In a multivariable analysis, preillness functional status and chronic conditions were associated with healthcare burden at month 3 but illness characteristics were not.ConclusionsPediatric ARDS survivors report high rates of healthcare burden and health resource utilization at 3- and 9-month post-ARDS. Future studies should assess the impact of improved care coordination to simplify care (e.g., medication management) and improve family burden.Copyright © 2024 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.

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