. 2022 Nov 1;23(11):893-907.

doi: 10.1097/PCC.0000000000003055. Epub 2022 Aug 29.

A Core Outcome Measurement Set for Pediatric Critical Care

Neethi P Pinto^{1

2}, Aline B Maddux³, Leslie A Dervan⁴, Alan G Woodruff⁵, Jessica M Jarvis⁶, Sholeen Nett⁷, Elizabeth Y Killien⁴, Robert J Graham⁸, Karen Choong⁹, Peter M Luckett^{10

11}, Julia A Heneghan¹², Katherine Biagas¹³, Erin F Carlton^{14

15}, Mary E Hartman¹⁶, Lauren Yagiela^{17

18}, Kelly N Michelson^{19

20}, Joseph C Manning^{21

22}, Debbie A Long²³, Jan Hau Lee²⁴, Beth S Slomine^{25

26}, Sue R Beers²⁷, Trevor Hall²⁸, Brenda M Morrow²⁹, Kathleen Meert^{17

18}, Maria Del Pilar Arias Lopez³⁰, Hennie Knoester³¹, Amy Houtrow³², Lenora Olson³³, Lisa Steele³⁴, Luregn J Schlapbach^{35

36}, Randall S Burd³⁷, Ruth Grosskreuz³⁸, Warwick Butt³⁹, Ericka L Fink⁴⁰, R Scott Watson⁴; POST-PICU Investigators of the Pediatric Acute Lung Injury and Sepsis Investigators (PALISI) Network and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN)

Collaborators, Affiliations

Collaborators

POST-PICU Investigators of the Pediatric Acute Lung Injury and Sepsis Investigators (PALISI) Network and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN):
R Scott Watson, Mike Cronin, Andy Geneslaw, Michele Loi, Sarah Murphy, Vinay Nadkarni, Katie R Nielsen, Steven L Shein, Kristen Smith, Samer Abu-Sultaneh, Alexis Topjian, Reinis Balmaks, Jane Lin Di Gennaro, Reid W D Farris, Madhura Hallman, Mara Leimanis, Mary McNally, Julie Menzies, Danielle Van Damme, Jane E Whitney, K Sarah Hoehn, Neelima Marupudi, Jonna Clark, J Dean Jarvis, Laura Loftis, Jennifer A Muszynski, Brian Rissmiller, Marcy Singleton, Ben White, Jerry Zimmerman, Alicia M Alcamo, Stefanie G Ames, Anoopindar Bhalla, Meredith Bone, Jay M Hunter, Sapna R Kudchadkar, Haifa Mtaweh, Andrew Prout, Madiha Raees, Joan S Roberts, Shilpa Shah, Manzilat Akande, Kevin Hummel, Catherine Madurski, Am Iqbal O'Meara, Elizabeth Pace, Monique Radman, Mekela Whyte-Nesfield, LeeAnn M Christie, Sabrina Derrington, Idris Evans, Denise M Goodman, Simon Li, John C Lin, Maureen A Madden, Lindy Moake, Katherine N Slain, Sara K VandenBranden, Robert A Berg, Joseph A Carcillo, J Michael Dean, Mark W Hall, Patrick S McQuillen, Peter M Mourani, Murray M Pollack, Anil Sapru, David Wessel, Athena Zuppa

Affiliations

¹ Department of Anesthesiology and Critical Care, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA.
² Division of Critical Care Medicine, Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, PA.
³ Department of Pediatrics, Section of Critical Care Medicine, University of Colorado School of Medicine and Children's Hospital Colorado, Aurora, CO.
⁴ Division of Pediatric Critical Care Medicine, Department of Pediatrics, University of Washington and Seattle Children's, Seattle, WA.
⁵ Department of Anesthesiology, Section of Pediatric Critical Care Medicine, Wake Forest School of Medicine, Winston Salem, NC.
⁶ Department of Physical Medicine and Rehabilitation, Division of Pediatric Rehabilitation Medicine, University of Pittsburgh, Pittsburgh, PA.
⁷ Department of Pediatrics, Section of Critical Care Medicine, Dartmouth Hitchcock Medical Center, Lebanon, NH.
⁸ Division of Critical Care Medicine, Department of Anesthesiology, Critical Care and Pain Medicine, Boston Children's Hospital, Boston, MA.
⁹ Departments of Pediatrics, Critical Care, Health Evidence and Impact, McMaster University, Hamilton, ON, Canada.
¹⁰ Department of Pediatrics, UT Southwestern Medical Center, Dallas, TX.
¹¹ Division of Pediatric Critical Care Medicine, Children's Health, Dallas, TX.
¹² Division of Critical Care, Department of Pediatrics, University of Minnesota Masonic Children's Hospital, Minneapolis, MN.
¹³ Department of Pediatrics, Division of Pediatric Critical Care Medicine, The Renaissance School of Medicine at Stony Brook University and the Stony Brook Children's Hospital, Stony Brook, NY.
¹⁴ Division of Pediatric Critical Care Medicine, Department of Pediatrics, University of Michigan, Ann Arbor, MI.
¹⁵ Susan B. Meister Child Health Evaluation and Research Center, Department of Pediatrics, University of Michigan, Ann Arbor, MI.
¹⁶ Division of Pediatric Critical Care Medicine, Department of Pediatrics, Washington University in St. Louis, St. Louis, MO.
¹⁷ Division of Critical Care, Department of Pediatrics, Children's Hospital of Michigan, Detroit, MI.
¹⁸ Department of Pediatrics, Central Michigan University, Mount Pleasant, MI.
¹⁹ Division of Pediatric Critical Care Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL.
²⁰ Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL.
²¹ Centre for Children and Young People Health Research, School of Health Sciences, University of Nottingham, Nottingham, United Kingdom.
²² Nottingham Children's Hospital, Nottingham University Hospitals NHS Trust, Nottingham, United Kingdom.
²³ School of Nursing, Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD, Australia.
²⁴ Children's Intensive Care Unit, KK Women's and Children's Hospital, Singapore.
²⁵ Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD.
²⁶ Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD.
²⁷ Department of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, PA.
²⁸ Department of Pediatrics, Division of Pediatric Psychology, Pediatric Critical Care and Neurotrauma Recovery Program, Oregon Health & Science University, Portland, OR.
²⁹ Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa.
³⁰ Department of Pediatric Critical Care, Hospital de Niños Ricardo Gutierrez, SATI-Q Program, Argentine Society of Intensive Care, Buenos Aires, Argentina.
³¹ Pediatric Intensive Care Unit, Emma Children's Hospital, Amsterdam University Medical Centers, Amsterdam, The Netherlands.
³² Department of Physical Medicine & Rehabilitation, University of Pittsburgh School of Medicine, Pittsburgh, PA.
³³ Department of Pediatrics, University of Utah, Salt Lake City, UT.
³⁴ Research Institute, Nationwide Children's Hospital, Columbus, OH.
³⁵ Department of Intensive Care and Neonatology, Children`s Research Center, University Children`s Hospital Zurich, Zurich, Switzerland.
³⁶ Department of Intensive Care and Neonatology, Child Health Research Centre, University of Queensland, Brisbane, QLD, Australia.
³⁷ Division of Trauma and Burn Surgery, Center for Surgical Care, Children's National Hospital, Washington, DC.
³⁸ Research Institute, Children's Hospital Colorado, Aurora, CO.
³⁹ Intensive Care Unit, Royal Children's Hospital Melbourne, Melbourne, VIC, Australia.
⁴⁰ Department of Critical Care Medicine, Division of Pediatric Critical Care Medicine, UPMC Children's Hospital of Pittsburgh, Pittsburgh, PA.

PMID: 36040097
PMCID: PMC9633391
DOI: 10.1097/PCC.0000000000003055

A Core Outcome Measurement Set for Pediatric Critical Care

Neethi P Pinto et al. Pediatr Crit Care Med. 2022.

. 2022 Nov 1;23(11):893-907.

doi: 10.1097/PCC.0000000000003055. Epub 2022 Aug 29.

Authors

Collaborators

POST-PICU Investigators of the Pediatric Acute Lung Injury and Sepsis Investigators (PALISI) Network and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network (CPCCRN):
R Scott Watson, Mike Cronin, Andy Geneslaw, Michele Loi, Sarah Murphy, Vinay Nadkarni, Katie R Nielsen, Steven L Shein, Kristen Smith, Samer Abu-Sultaneh, Alexis Topjian, Reinis Balmaks, Jane Lin Di Gennaro, Reid W D Farris, Madhura Hallman, Mara Leimanis, Mary McNally, Julie Menzies, Danielle Van Damme, Jane E Whitney, K Sarah Hoehn, Neelima Marupudi, Jonna Clark, J Dean Jarvis, Laura Loftis, Jennifer A Muszynski, Brian Rissmiller, Marcy Singleton, Ben White, Jerry Zimmerman, Alicia M Alcamo, Stefanie G Ames, Anoopindar Bhalla, Meredith Bone, Jay M Hunter, Sapna R Kudchadkar, Haifa Mtaweh, Andrew Prout, Madiha Raees, Joan S Roberts, Shilpa Shah, Manzilat Akande, Kevin Hummel, Catherine Madurski, Am Iqbal O'Meara, Elizabeth Pace, Monique Radman, Mekela Whyte-Nesfield, LeeAnn M Christie, Sabrina Derrington, Idris Evans, Denise M Goodman, Simon Li, John C Lin, Maureen A Madden, Lindy Moake, Katherine N Slain, Sara K VandenBranden, Robert A Berg, Joseph A Carcillo, J Michael Dean, Mark W Hall, Patrick S McQuillen, Peter M Mourani, Murray M Pollack, Anil Sapru, David Wessel, Athena Zuppa

Affiliations

¹ Department of Anesthesiology and Critical Care, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA.
² Division of Critical Care Medicine, Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia, Philadelphia, PA.
³ Department of Pediatrics, Section of Critical Care Medicine, University of Colorado School of Medicine and Children's Hospital Colorado, Aurora, CO.
⁴ Division of Pediatric Critical Care Medicine, Department of Pediatrics, University of Washington and Seattle Children's, Seattle, WA.
⁵ Department of Anesthesiology, Section of Pediatric Critical Care Medicine, Wake Forest School of Medicine, Winston Salem, NC.
⁶ Department of Physical Medicine and Rehabilitation, Division of Pediatric Rehabilitation Medicine, University of Pittsburgh, Pittsburgh, PA.
⁷ Department of Pediatrics, Section of Critical Care Medicine, Dartmouth Hitchcock Medical Center, Lebanon, NH.
⁸ Division of Critical Care Medicine, Department of Anesthesiology, Critical Care and Pain Medicine, Boston Children's Hospital, Boston, MA.
⁹ Departments of Pediatrics, Critical Care, Health Evidence and Impact, McMaster University, Hamilton, ON, Canada.
¹⁰ Department of Pediatrics, UT Southwestern Medical Center, Dallas, TX.
¹¹ Division of Pediatric Critical Care Medicine, Children's Health, Dallas, TX.
¹² Division of Critical Care, Department of Pediatrics, University of Minnesota Masonic Children's Hospital, Minneapolis, MN.
¹³ Department of Pediatrics, Division of Pediatric Critical Care Medicine, The Renaissance School of Medicine at Stony Brook University and the Stony Brook Children's Hospital, Stony Brook, NY.
¹⁴ Division of Pediatric Critical Care Medicine, Department of Pediatrics, University of Michigan, Ann Arbor, MI.
¹⁵ Susan B. Meister Child Health Evaluation and Research Center, Department of Pediatrics, University of Michigan, Ann Arbor, MI.
¹⁶ Division of Pediatric Critical Care Medicine, Department of Pediatrics, Washington University in St. Louis, St. Louis, MO.
¹⁷ Division of Critical Care, Department of Pediatrics, Children's Hospital of Michigan, Detroit, MI.
¹⁸ Department of Pediatrics, Central Michigan University, Mount Pleasant, MI.
¹⁹ Division of Pediatric Critical Care Medicine, Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL.
²⁰ Department of Pediatrics, Northwestern University Feinberg School of Medicine, Chicago, IL.
²¹ Centre for Children and Young People Health Research, School of Health Sciences, University of Nottingham, Nottingham, United Kingdom.
²² Nottingham Children's Hospital, Nottingham University Hospitals NHS Trust, Nottingham, United Kingdom.
²³ School of Nursing, Centre for Healthcare Transformation, Queensland University of Technology, Brisbane, QLD, Australia.
²⁴ Children's Intensive Care Unit, KK Women's and Children's Hospital, Singapore.
²⁵ Department of Neuropsychology, Kennedy Krieger Institute, Baltimore, MD.
²⁶ Department of Psychiatry and Behavioral Sciences, Johns Hopkins University School of Medicine, Baltimore, MD.
²⁷ Department of Psychiatry, University of Pittsburgh School of Medicine, Pittsburgh, PA.
²⁸ Department of Pediatrics, Division of Pediatric Psychology, Pediatric Critical Care and Neurotrauma Recovery Program, Oregon Health & Science University, Portland, OR.
²⁹ Department of Paediatrics and Child Health, University of Cape Town, Cape Town, South Africa.
³⁰ Department of Pediatric Critical Care, Hospital de Niños Ricardo Gutierrez, SATI-Q Program, Argentine Society of Intensive Care, Buenos Aires, Argentina.
³¹ Pediatric Intensive Care Unit, Emma Children's Hospital, Amsterdam University Medical Centers, Amsterdam, The Netherlands.
³² Department of Physical Medicine & Rehabilitation, University of Pittsburgh School of Medicine, Pittsburgh, PA.
³³ Department of Pediatrics, University of Utah, Salt Lake City, UT.
³⁴ Research Institute, Nationwide Children's Hospital, Columbus, OH.
³⁵ Department of Intensive Care and Neonatology, Children`s Research Center, University Children`s Hospital Zurich, Zurich, Switzerland.
³⁶ Department of Intensive Care and Neonatology, Child Health Research Centre, University of Queensland, Brisbane, QLD, Australia.
³⁷ Division of Trauma and Burn Surgery, Center for Surgical Care, Children's National Hospital, Washington, DC.
³⁸ Research Institute, Children's Hospital Colorado, Aurora, CO.
³⁹ Intensive Care Unit, Royal Children's Hospital Melbourne, Melbourne, VIC, Australia.
⁴⁰ Department of Critical Care Medicine, Division of Pediatric Critical Care Medicine, UPMC Children's Hospital of Pittsburgh, Pittsburgh, PA.

PMID: 36040097
PMCID: PMC9633391
DOI: 10.1097/PCC.0000000000003055

Abstract

Objectives: To identify a PICU Core Outcome Measurement Set (PICU COMS), a set of measures that can be used to evaluate the PICU Core Outcome Set (PICU COS) domains in PICU patients and their families.

Design: A modified Delphi consensus process.

Setting: Four webinars attended by PICU physicians and nurses, pediatric surgeons, rehabilitation physicians, and scientists with expertise in PICU clinical care or research ( n = 35). Attendees were from eight countries and convened from the Pediatric Acute Lung Injury and Sepsis Investigators Pediatric Outcomes STudies after PICU Investigators and the Eunice Kennedy Shriver National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network PICU COS Investigators.

Subjects: Measures to assess outcome domains of the PICU COS are as follows: cognitive, emotional, overall (including health-related quality of life), physical, and family health. Measures evaluating social health were also considered.

Interventions: None.

Measurements and main results: Measures were classified as general or additional based on generalizability across PICU populations, feasibility, and relevance to specific COS domains. Measures with high consensus, defined as 80% agreement for inclusion, were selected for the PICU COMS. Among 140 candidate measures, 24 were delineated as general (broadly applicable) and, of these, 10 achieved consensus for inclusion in the COMS (7 patient-oriented and 3 family-oriented). Six of the seven patient measures were applicable to the broadest range of patients, diagnoses, and developmental abilities. All were validated in pediatric populations and have normative pediatric data. Twenty additional measures focusing on specific populations or in-depth evaluation of a COS subdomain also met consensus for inclusion as COMS additional measures.

Conclusions: The PICU COMS delineates measures to evaluate domains in the PICU COS and facilitates comparability across future research studies to characterize PICU survivorship and enable interventional studies to target long-term outcomes after critical illness.

PubMed Disclaimer

Conflict of interest statement

Dr. Maddux’s institution received funding from the National Institute of Child Health and Human Development (NICHD) (K23HD096018) and the Francis Family Foundation, Parker B Francis Fellowship. Drs. Maddux, Jarvis, Killien, Meert, Olson, and Fink received support for article research from the National Institutes of Health (NIH). Drs. Jarvis, Michelson, Beers, Meert, and Fink’s institutions received funding from the NIH. Dr. Jarvis received funding from the NIH (T32 HD040686). Dr. Killien and Olson’s institutions received funding from the NICHD. Dr. Choong’s institution received funding from the AFP Innovation Fund; she received funding from McMaster University. Dr. Michelson’s institution received funding from The National Palliative Care Research Center, and the Greenwall Foundation. Dr. Lee’s institution received funding from the National Medical Research Council, Singapore. Dr. Slomine received funding from the National Academy of Neuropsychology and Cambridge University Press. Dr. Beers’ institution received funding from the National Football League Brain Health Study. Dr. Morrow received funding from EduPro, Imperial College Press, the University of Cape Town, and the South African Society of Physiotherapy. Dr. Fink’s institution received funding from the Neurocritical Care Society; she received funding from the Child Nervous Society and the American Board of Pediatrics CCM Subsection member. The remaining authors have disclosed that they do not have any potential conflicts of interest.

Figures

**Figure 1:. Core Outcome Measurement Set Instrument Selection**
^aMeasures which had their first use in publications of the scoping review in the final 10 years of the inclusion dates (2007–2017) were not excluded as these instruments may not have had time to reach a sufficient publication threshold ^bThe 140 candidate measures included 31 cognitive, 23 emotional, 26 overall health/HRQL, 17 physical, 24 family, and 19 social measures. ^c The 58 recommended measures included 9 cognitive, 16 emotional, 10 overall health/HRQL, 7 physical, 11 family, and 5 social measures. ^d The 5 write-in measures included 2 emotional and 3 family measures. ^e The 20 write-in measures included 8 cognitive, 8 overall health/HRQL, 1 family, and 3 social measures ^fMeasures that evaluated more than one domain had a round of voting for each applicable domain. Thus, there were more rounds of voting than unique measures. PCCM: pediatric critical care medicine; COMS: core outcomes measurement set; PALISI POST-PICU: Pediatric acute lung injury and sepsis investigators Pediatric Outcomes STudies after Pediatric Intensive Care Unit; CPCCRN: Collaborate Pediatric Critical Care Research Network.

**Figure 2:. Integrating PICS-p, the PICU COS, and PICU COMS**
The Pediatric Intensive Care Unit (PICU) Core Outcome Measures Set (COMS) provides recommended measures to assess the outcomes domains identified in the Post-Intensive Care Syndrome-pediatrics (PICS-p) conceptual framework and the PICU Core Outcome Set (COS), enabling investigators to consistently measure the impact of critical illness on PICU survivorship. (Adapted with permission from Manning JC, Pinto NP, Rennick JE, et al, Conceptualizing Post-Intensive Care Syndrome in Children-The PICS-p Framework, *Pediatric Critical Care Medicine* 2018, 19 (4) 298–300.) PEDICAT = Pediatric Evaluation of Disability Inventory – Computer Adaptive Test, PROMIS = Patient Reported Outcomes Measurement Information System, NIH = National Institutes of Health, Pediatric Quality of Life Inventory COS Subdomain COMS General Measure

See this image and copyright information in PMC

Comment in

Measure to Improve Like PROs: Patient-Related Outcomes in Survivors of Pediatric Critical Illness.
LaRosa JM, Scholefield BR, Kudchadkar SR. LaRosa JM, et al. Pediatr Crit Care Med. 2022 Nov 1;23(11):946-949. doi: 10.1097/PCC.0000000000003084. Epub 2022 Nov 3. Pediatr Crit Care Med. 2022. PMID: 36326460 No abstract available.

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A Core Outcome Measurement Set for Pediatric Critical Care

Collaborators

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A Core Outcome Measurement Set for Pediatric Critical Care

Authors

Collaborators

Affiliations

Abstract

Conflict of interest statement

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