Ericka L Fink1, Aline B Maddux2, Neethi Pinto3, Samuel Sorenson4, Daniel Notterman5, J Michael Dean4, Joseph A Carcillo1, Robert A Berg3, Athena Zuppa3, Murray M Pollack6, Kathleen L Meert7, Mark W Hall8, Anil Sapru9, Patrick S McQuillen10, Peter M Mourani2, David Wessel6, Deborah Amey11, Andrew Argent12, Werther Brunow de Carvalho13, Warwick Butt14, Karen Choong15, Martha A Q Curley16, Maria Del Pilar Arias Lopez17, Demet Demirkol18, Ruth Grosskreuz2, Amy J Houtrow19, Hennie Knoester20, Jan Hau Lee21, Debbie Long22, Joseph C Manning23, Brenda Morrow24, Jhuma Sankar25, Beth S Slomine26, McKenna Smith4, Lenora M Olson4, R Scott Watson27. 1. Department of Critical Care Medicine, UPMC Children's Hospital of Pittsburgh, Pittsburgh, PA. 2. Department of Pediatrics, Critical Care Medicine, University of Colorado School of Medicine, Children's Hospital Colorado, Aurora, CO. 3. Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, PA. 4. Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT. 5. Department of Molecular Biology, Princeton University, Princeton, NJ. 6. Department of Pediatrics, Children's National Hospital, Washington, DC. 7. Department of Pediatrics, Children's Hospital of Michigan, Detroit, MI. 8. Department of Pediatrics, Nationwide Children's Hospital, Columbus, OH. 9. Department of Pediatrics, Mattel Children's Hospital, University of California Los Angeles, Los Angeles, CA. 10. Department of Pediatrics, Benioff Children's Hospital, University of California, San Francisco, San Francisco, CA. 11. Collaborative Pediatric Critical Care Research Network Family Collaborative, Great Falls, VA. 12. Department of Paediatrics and Child Health, University of Cape Town, and Red Cross War Memorial Children's Hospital, Cape Town, South Africa. 13. Department of Pediatrics, University of São Paulo, São Paulo, Brazil. 14. Intensive Care Department of Paediatrics, The Royal Childrens Hospital, Melbourne, VIC, Australia. 15. Departments of Pediatrics and Critical Care, McMaster University, Hamilton, ON, Canada. 16. Department of Family and Community Health (Nursing), Anesthesiology and Critical Care (Perelman School of Medicine), University of Pennsylvania; Research Institute, Children's Hospital of Philadelphia, Philadelphia, PA. 17. Department of Pediatric Critical Care, Hospital de Niños Dr R. Gutierrez, Buenos Aires, Argentina. 18. Department of Pediatric Intensive Care, Istanbul University, Child Health Institute and Istanbul Faculty of Medicine, Istanbul, Turkey. 19. Department of Physical Medicine & Rehabilitation, University of Pittsburgh, Pittsburgh, PA. 20. Department of Paediatrics, Centrum Universiteit van Amsterdam, Amsterdam, The Netherlands. 21. Department of Pediatric Subspecialities, KK Women's and Children's Hospital, Singapore. 22. School of Nursing, Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD, Australia. 23. Children and Young People Health Research, School of Health Sciences, University of Nottingham and Nottingham Children's Hospital, Nottingham University Hospitals NHS Trust, Nottingham, United Kingdom. 24. Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa. 25. Department of Pediatrics, All India Institute of Medical Sciences, Chandigarh, India. 26. Department of Neuropsychology, Kennedy Krieger Institute and Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD. 27. Department of Pediatrics, University of Washington School of Medicine and Center for Child Health, Behavior, and Development, Seattle Children's Research Institute, Seattle, WA.
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.
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.
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