@article{0f7b89b0266c498ab2a8623ec7fed3fd,
title = "A Core Outcome Set for Pediatric Critical Care∗",
abstract = "Objectives: More children are surviving critical illness but are at risk of residual or new health conditions. An evidence-informed and stakeholder-recommended core outcome set is lacking for pediatric critical care outcomes. Our objective was to create a multinational, multistakeholder-recommended pediatric critical care core outcome set for inclusion in clinical and research programs. Design: A two-round modified Delphi electronic survey was conducted with 333 invited research, clinical, and family/advocate stakeholders. Stakeholders completing the first round were invited to participate in the second. Outcomes scoring greater than 69% {"}critical{"} and less than 15% {"}not important{"} advanced to round 2 with write-in outcomes considered. The Steering Committee held a virtual consensus conference to determine the final components. Setting: Multinational survey. Patients: Stakeholder participants from six continents representing clinicians, researchers, and family/advocates. Measurements and Main Results: Overall response rates were 75% and 82% for each round. Participants voted on seven Global Domains and 45 Specific Outcomes in round 1, and six Global Domains and 30 Specific Outcomes in round 2. Using overall (three stakeholder groups combined) results, consensus was defined as outcomes scoring greater than 90% {"}critical{"} and less than 15% {"}not important{"} and were included in the final PICU core outcome set: Four Global Domains (Cognitive, Emotional, Physical, and Overall Health) and four Specific Outcomes (Child Health-Related Quality of Life, Pain, Survival, and Communication). Families (n = 21) suggested additional critically important outcomes that did not meet consensus, which were included in the PICU core outcome set-extended. Conclusions: The PICU core outcome set and PICU core outcome set-extended are multistakeholder-recommended resources for clinical and research programs that seek to improve outcomes for children with critical illness and their families.",
keywords = "child, critical care, family, outcome assessment, postintensive care syndrome",
author = "Fink, {Ericka L.} and Maddux, {Aline B.} and Neethi Pinto and Samuel Sorenson and Daniel Notterman and Dean, {J. Michael} and Carcillo, {Joseph A.} and Berg, {Robert A.} and Athena Zuppa and Pollack, {Murray M.} and Meert, {Kathleen L.} and Hall, {Mark W.} and Anil Sapru and Mcquillen, {Patrick S.} and Mourani, {Peter M.} and David Wessel and Deborah Amey and Andrew Argent and {Brunow De Carvalho}, Werther and Warwick Butt and Karen Choong and Curley, {Martha A.Q.} and {Del Pilar Arias Lopez}, Maria and Demet Demirkol and Ruth Grosskreuz and Houtrow, {Amy J.} and Hennie Knoester and Lee, {Jan Hau} and Debbie Long and Manning, {Joseph C.} and Brenda Morrow and Jhuma Sankar and Slomine, {Beth S.} and McKenna Smith and Olson, {Lenora M.} and Watson, {R. Scott}",
note = "Funding Information: Drs. Fink{\textquoteright}s, Dean{\textquoteright}s, Berg{\textquoteright}s, Pollack{\textquoteright}s, Meert{\textquoteright}s, Hall{\textquoteright}s, Sapru{\textquoteright}s, Mourani{\textquoteright}s, Wessel{\textquoteright}s, and Olson{\textquoteright}s institutions received funding from the National Institutes of Health (NIH). Drs. Fink, Maddux, Sorenson, Dean, Carcillo, Berg, Zuppa, Pollack, Meert, Hall, Sapru, McQuillen, Mourani, Wessel, Demirkol, and Olson received support for article research from the NIH. Drs. Maddux{\textquoteright}s, Sorenson{\textquoteright}s, Carcillo{\textquoteright}s, Zuppa{\textquoteright}s, and McQuillen{\textquoteright}s institutions received funding from the NIH/Eunice Kennedy Shriver National Institute of Child Health and Human Development. Dr. Maddux{\textquoteright}s institution received funding from the Francis Family Foundation, and he receives support from the National Institute for Health Research. Dr. Hall received funding from La Jolla Pharmaceuticals. Dr. Argent received funding for transport, accommodation, and conference registration to a number of local and international congresses as invited speaker. Dr. Choong{\textquoteright}s institution received funding from Alternative Funding Plan Innovation Fund (for PICU Liber8 study), and she received funding from McMaster University. Dr. Lee received funding from KK Women{\textquoteright}s and Children{\textquoteright}s Hospital. Dr. Morrow received funding from University of Cape Town, Imperial College Press (royalties), and Critical Care Society of Southern Africa. Dr. Slomine received funding from law firms and rehabilitation hospitals. The remaining authors have disclosed that they do not have any potential conflicts of interest. Funding Information: Supported, in part, by the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN). It was approved by the CPCCRN Steering Committee and funded by grant numbers U01-HD049934, UG1-HD083171, UG1-HD050096, UG1-HD063108, UG1-HD049983, UG1-HD049981, UG1-HD083170, and UG-HD083166. Additional support from NICHD K23HD096018 (Maddux) and the Francis Family Foundation (Maddux). Publisher Copyright: {\textcopyright} 2020 Lippincott Williams and Wilkins. All rights reserved.",
year = "2020",
month = dec,
day = "1",
doi = "10.1097/CCM.0000000000004660",
language = "English (US)",
volume = "48",
pages = "1819--1828",
journal = "Critical Care Medicine",
issn = "0090-3493",
publisher = "Lippincott Williams and Wilkins",
number = "12",
}