@article{d6b133863f434972894ec93402d03080,
title = "Assessment of Patient Health-Related Quality of Life and Functional Outcomes in Pediatric Acute Respiratory Distress Syndrome∗",
abstract = "OBJECTIVES: To describe health-related quality of life (HRQL) and functional outcomes in pediatric acute respiratory distress syndrome (ARDS) and to determine risk factors associated with poor outcome defined as death or severe reduction in HRQL at 28 days or ICU discharge. DESIGN: Prospective multisite cohort-outcome study conducted between 2019 and 2020. SETTING: Eight academic PICUs in the United States. PATIENTS: Children with ARDS based on standard criteria. INTERVENTIONS: Patient characteristics and illness severity were collected during PICU admission. Parent proxy-report measurements were obtained at baseline, day 28/ICU discharge, month 3, and month 9, utilizing Pediatric Quality of Life Inventory and Functional Status Scale (FSS). A composite outcome evaluated using univariate and multivariate analysis was death or severe reduction in HRQL (>25% reduction in the Pediatric Quality of Life Inventory at day 28/ICU discharge. MEASUREMENTS AND MAIN RESULTS: This study enrolled 122 patients with a median age of 3 years (interquartile range, 1-12 yr). Common etiologies of ARDS included pneumonia (n = 63; 52%) and sepsis (n = 27; 22%). At day 28/ICU discharge, half (50/95; 53%) of surviving patients with follow-up data reported a greater than 10% decrease in HRQL from baseline, and approximately one-third of participants (n = 19/61; 31%) reported a greater than 10% decrease in HRQL at 9 months. Trends in FSS were similar. Of 104 patients with data, 47 patients (45%) died or reported a severe decrease of greater than 25% in HRQL at day 28/ICU discharge. Older age was associated with an increased risk of death or severe reduction in HRQL (odds ratio, 1.08; CI, 1.01-1.16). CONCLUSIONS: Children with ARDS are at risk for deterioration in HRQL and FSS that persists up to 9 months after ARDS. Almost half of children with ARDS experience a poor outcome including death or severe reduction in HRQL at day 28/ICU discharge.",
keywords = "PICU, acute respiratory distress syndrome, functional status, patient-reported outcome measures, quality of life, survivors",
author = "Ames, {Stefanie G.} and Banks, {Russell K.} and Zinter, {Matt S.} and Fink, {Ericka L.} and McQuillen, {Patrick S.} and Hall, {Mark W.} and Athena Zuppa and Meert, {Kathleen L.} and Mourani, {Peter M.} and Carcillo, {Joseph A.} and Todd Carpenter and Pollack, {Murray M.} and Berg, {Robert A.} and Manvita Mareboina and Richard Holubkov and Dean, {J. Michael} and Notterman, {Daniel A.} and Anil Sapru",
note = "Funding Information: Supported, in part, by the Collaborative Pediatric Critical Care Research Network Sites. These sites are supported by Cooperative Agreements UG1HD050096 (Children{\textquoteright}s Hospital of Michigan), UG1HD063108 (Children{\textquoteright}s Hospital of Philadelphia), UG1HD049983 (Children{\textquoteright}s Hospital of Pittsburgh), UG1HD049981 (Children{\textquoteright}s National Hospital), UG1HD083170 (Nationwide Children{\textquoteright}s Hospital), UG1HD083171 (Children{\textquoteright}s Hospital Colorado), UG1HD083166 (UCSF Benioff Children{\textquoteright}s Hospital), and U01HD049934 (University of Utah), from the Eunice Kennedy Shriver National Institute for Child Health and Human Development. Funding Information: Drs. Banks{\textquoteright}, Fink{\textquoteright}s, Hall{\textquoteright}s, Zuppa{\textquoteright}s, Meert{\textquoteright}s, Mourani{\textquoteright}s, Pollack{\textquoteright}s, Berg{\textquoteright}s, Holubkov{\textquoteright}s, and Dean{\textquoteright}s institutions received funding from the National Institutes of Health (NIH). Drs. Banks, Zinter, Fink, McQuillen, Hall, Zuppa, Meert, Mourani, Carcillo, Carpenter, Pollack, and Berg, Ms. Mareboina, and Drs. Holubkov, Dean, and Sapru received support for article research from the NIH. Dr. Banks disclosed government work. Dr. Zinter received funding from the National Heart, Lung, and Blood Institute K Award and the American Thoracic Society. Dr. Fink{\textquoteright}s institution received funding from the Neurocritical Care Society. Dr. Hall received funding from La Jolla Pharmaceuticals and Kiadis. Drs. Carcillo{\textquoteright}s and Carpenter{\textquoteright}s institutions received funding from the National Institute for Child Health and Human Development (NICHD). Dr. Holubkov received funding from Pfizer, Physicians Committee for Responsible Medicine, Revance, and Medimmune. Dr. Sapru{\textquoteright}s institution received funding from the NICHD (U01HD049934). The remaining authors have disclosed that they do not have any potential conflicts of interest. Publisher Copyright: {\textcopyright} 2022 Lippincott Williams and Wilkins. All rights reserved.",
year = "2022",
month = jul,
day = "1",
doi = "10.1097/PCC.0000000000002959",
language = "English",
volume = "23",
pages = "E319--E328",
journal = "Pediatric Critical Care Medicine",
issn = "1529-7535",
number = "7",
}