Crit Care Med 2020 Dec;48(12):1819-1828
1Department of Critical Care Medicine, UPMC Children's Hospital of Pittsburgh, Pittsburgh, PA. 2Department of Pediatrics, Critical Care Medicine, University of Colorado School of Medicine, Children's Hospital Colorado, Aurora, CO. 3Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, PA. 4Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, UT. 5Department of Molecular Biology, Princeton University, Princeton, NJ. 6Department of Pediatrics, Children's National Hospital, Washington, DC. 7Department of Pediatrics, Children's Hospital of Michigan, Detroit, MI. 8Department of Pediatrics, Nationwide Children's Hospital, Columbus, OH. 9Department of Pediatrics, Mattel Children's Hospital, University of California Los Angeles, Los Angeles, CA. 10Department of Pediatrics, Benioff Children's Hospital, University of California, San Francisco, San Francisco, CA. 11Collaborative Pediatric Critical Care Research Network Family Collaborative, Great Falls, VA. 12Department of Paediatrics and Child Health, University of Cape Town, and Red Cross War Memorial Children's Hospital, Cape Town, South Africa. 13Department of Pediatrics, University of São Paulo, São Paulo, Brazil. 14Intensive Care Department of Paediatrics, The Royal Childrens Hospital, Melbourne, VIC, Australia. 15Departments of Pediatrics and Critical Care, McMaster University, Hamilton, ON, Canada. 16Department 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. 17Department of Pediatric Critical Care, Hospital de Niños Dr R. Gutierrez, Buenos Aires, Argentina. 18Department of Pediatric Intensive Care, Istanbul University, Child Health Institute and Istanbul Faculty of Medicine, Istanbul, Turkey. 19Department of Physical Medicine & Rehabilitation, University of Pittsburgh, Pittsburgh, PA. 20Department of Paediatrics, Centrum Universiteit van Amsterdam, Amsterdam, The Netherlands. 21Department of Pediatric Subspecialities, KK Women's and Children's Hospital, Singapore. 22School of Nursing, Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD, Australia. 23Children 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. 24Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa. 25Department of Pediatrics, All India Institute of Medical Sciences, Chandigarh, India. 26Department of Neuropsychology, Kennedy Krieger Institute and Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD. 27Department of Pediatrics, University of Washington School of Medicine and Center for Child Health, Behavior, and Development, Seattle Children's Research Institute, Seattle, WA.
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.