Continuing Care For Critically Ill Children Beyond Hospital Discharge: Current State of Follow-up

doi:10.1542/hpeds.2021-006464

. 2022 Apr 1;12(4):359-393.

doi: 10.1542/hpeds.2021-006464.

Continuing Care For Critically Ill Children Beyond Hospital Discharge: Current State of Follow-up

Cydni N Williams^{1

2}, Trevor A Hall^{3

2}, Conall Francoeur⁴, Jonathan Kurz⁵, Lindsey Rasmussen⁶, Mary E Hartman⁷, Am Iqbal O'meara⁸, Nikki Miller Ferguson⁸, Ericka L Fink⁹, Tracie Walker¹⁰, Kurt Drury¹, Jessica L Carpenter¹¹, Jennifer Erklauer¹², Craig Press¹³, Mark S Wainwright¹⁴, Marlina Lovett¹⁵, Heda Dapul¹⁶, Sarah Murphy¹⁷, Sarah Risen¹⁸, Rejean M Guerriero¹⁹, Alan Woodruff^{20

21}, Kristin P Guilliams^{7

20

22}; PEDIATRIC NEUROCRITICAL CARE RESEARCH GROUP (PNCRG).

Affiliations

¹ aDivisions of Pediatric Critical Care.
² bPediatric Critical Care and Neurotrauma Recovery Program, Oregon Health & Science University, Portland, Oregon.
³ cPediatric Psychology.
⁴ dDepartment of Pediatrics, CHU de Québec - Université Laval Research Center, Quebec, QC, Canada.
⁵ dTranslational Pharmacology, Merck & Co., Inc., North Wales, Pennsylvania.
⁶ fDivision of Pediatric Critical Care Medicine, Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California.
⁷ gDivision of Pediatric Critical Care, Department of Pediatrics, Washington University School of Medicine, St. Louis, Missouri.
⁸ hDivision of Pediatric Critical Care, Department of Pediatrics, Children's Hospital of Richmond at Virginia Commonwealth University, Richmond, Virginia.
⁹ IDepartment of Critical Care Medicine, University of Pittsburgh Medical Center, Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania.
¹⁰ jDivision of Pediatric Critical Care, Department of Pediatrics, University of North Carolina, Chapel Hill, North Carolina.
¹¹ kDivision of Pediatric Neurology, Departments of Pediatrics and Neurology, University of Maryland School of Medicine, Baltimore, Maryland.
¹² lSections of Critical Care Medicine and Pediatric Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine and Texas Children's Hospital, Houston, Texas.
¹³ mSection of Child Neurology, Department of Pediatrics, University of Colorado, Boulder, Colorado.
¹⁴ nDivision of Pediatric Neurology, Department of Neurology, University of Washington, Seattle, Washington.
¹⁵ oDivision of Critical Care Medicine, Department of Pediatrics, The Ohio State University College of Medicine, Nationwide Children's Hospital, Columbus, Ohio.
¹⁶ pDivision of Pediatric Critical Care, Department of Pediatrics, New York University Grossman School of Medicine, New York, New York.
¹⁷ qDivision of Pediatric Critical Care, Department of Pediatrics, Harvard Medical School, Boston, Massachusetts.
¹⁸ rSection of Pediatric Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine and Texas Children's Hospital, Houston, Texas.
¹⁹ sDivision of Pediatric and Developmental Neurology, Department of Neurology, Washington University School of Medicine, St. Louis, Missouri.
²⁰ tSection of Pediatric Critical Care, Department of Anesthesiology.
²¹ uCritical Illness, Injury and Recovery Research Center, Wake Forest School of Medicine, Winston-Salem, North Carolina.
²² vWashington University School of Medicine, Mallinckrodt Institute of Radiology, Division of Neuroradiology, St. Louis, Missouri.

PMID: 35314865
PMCID: PMC9182716
DOI: 10.1542/hpeds.2021-006464

Continuing Care For Critically Ill Children Beyond Hospital Discharge: Current State of Follow-up

Cydni N Williams et al. Hosp Pediatr. 2022.

. 2022 Apr 1;12(4):359-393.

doi: 10.1542/hpeds.2021-006464.

Authors

Affiliations

¹ aDivisions of Pediatric Critical Care.
² bPediatric Critical Care and Neurotrauma Recovery Program, Oregon Health & Science University, Portland, Oregon.
³ cPediatric Psychology.
⁴ dDepartment of Pediatrics, CHU de Québec - Université Laval Research Center, Quebec, QC, Canada.
⁵ dTranslational Pharmacology, Merck & Co., Inc., North Wales, Pennsylvania.
⁶ fDivision of Pediatric Critical Care Medicine, Department of Pediatrics, Stanford University School of Medicine, Palo Alto, California.
⁷ gDivision of Pediatric Critical Care, Department of Pediatrics, Washington University School of Medicine, St. Louis, Missouri.
⁸ hDivision of Pediatric Critical Care, Department of Pediatrics, Children's Hospital of Richmond at Virginia Commonwealth University, Richmond, Virginia.
⁹ IDepartment of Critical Care Medicine, University of Pittsburgh Medical Center, Children's Hospital of Pittsburgh, Pittsburgh, Pennsylvania.
¹⁰ jDivision of Pediatric Critical Care, Department of Pediatrics, University of North Carolina, Chapel Hill, North Carolina.
¹¹ kDivision of Pediatric Neurology, Departments of Pediatrics and Neurology, University of Maryland School of Medicine, Baltimore, Maryland.
¹² lSections of Critical Care Medicine and Pediatric Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine and Texas Children's Hospital, Houston, Texas.
¹³ mSection of Child Neurology, Department of Pediatrics, University of Colorado, Boulder, Colorado.
¹⁴ nDivision of Pediatric Neurology, Department of Neurology, University of Washington, Seattle, Washington.
¹⁵ oDivision of Critical Care Medicine, Department of Pediatrics, The Ohio State University College of Medicine, Nationwide Children's Hospital, Columbus, Ohio.
¹⁶ pDivision of Pediatric Critical Care, Department of Pediatrics, New York University Grossman School of Medicine, New York, New York.
¹⁷ qDivision of Pediatric Critical Care, Department of Pediatrics, Harvard Medical School, Boston, Massachusetts.
¹⁸ rSection of Pediatric Neurology and Developmental Neuroscience, Department of Pediatrics, Baylor College of Medicine and Texas Children's Hospital, Houston, Texas.
¹⁹ sDivision of Pediatric and Developmental Neurology, Department of Neurology, Washington University School of Medicine, St. Louis, Missouri.
²⁰ tSection of Pediatric Critical Care, Department of Anesthesiology.
²¹ uCritical Illness, Injury and Recovery Research Center, Wake Forest School of Medicine, Winston-Salem, North Carolina.
²² vWashington University School of Medicine, Mallinckrodt Institute of Radiology, Division of Neuroradiology, St. Louis, Missouri.

PMID: 35314865
PMCID: PMC9182716
DOI: 10.1542/hpeds.2021-006464

Abstract

Objectives: Survivors of the PICU face long-term morbidities across health domains. In this study, we detail active PICU follow-up programs (PFUPs) and identify perceptions and barriers about development and maintenance of PFUPs.

Methods: A web link to an adaptive survey was distributed through organizational listservs. Descriptive statistics characterized the sample and details of existing PFUPs. Likert responses regarding benefits and barriers were summarized.

Results: One hundred eleven respondents represented 60 institutions located in the United States (n = 55), Canada (n = 3), Australia (n = 1), and the United Kingdom (n = 1). Details for 17 active programs were provided. Five programs included broad PICU populations, while the majority were neurocritical care (53%) focused. Despite strong agreement on the need to assess and treat morbidity across multiple health domains, 29% were physician only programs, and considerable variation existed in services provided by programs across settings. More than 80% of all respondents agreed PFUPs provide direct benefits and are essential to advancing knowledge on long-term PICU outcomes. Respondents identified "lack of support" as the most important barrier, particularly funding for providers and staff, and lack of clinical space, though successful programs overcome this challenge using a variety of funding resources.

Conclusions: Few systematic multidisciplinary PFUPs exist despite strong agreement about importance of this care and direct benefit to patients and families. We recommend stakeholders use our description of successful programs as a framework to develop multidisciplinary models to elevate continuity across inpatient and outpatient settings, improve patient care, and foster collaboration to advance knowledge.

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Conflict of interest statement

Conflicts of Interest: The authors have no conflicts of interest relevant to this article to disclose.

Figures

**Figure 1.**
Program activities and perceived benefits among respondents with active pediatric intensive care unit follow-up programs indicated by agreement with survey prompts.

**Figure 2.**
Agreement ratings of team members’ essentialness to pediatric intensive care unit follow-up programs

**Figure 3.**
Average ratings of barrier composite variables between respondents with active pediatric intensive care unit follow-up programs and those with interest in starting programs. Higher numerical ratings depict larger barrier.

**Figure 4.**
Key findings and recommendations for Pediatric Intensive Care Unit Follow-up Programs

See this image and copyright information in PMC

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References

1. Hartman ME, Williams CN, Hall TA, Bosworth CC, Piantino JA. Post-Intensive-Care Syndrome for the Pediatric Neurologist. Pediatr Neurol. Jul 2020;108:47–53. doi:10.1016/j.pediatrneurol.2020.02.003 - DOI - PMC - PubMed
1. Williams CN, Piantino J, McEvoy C, Fino N, Eriksson CO. The Burden of Pediatric Neurocritical Care in the United States. Pediatr Neurol. Dec 2018;89:31–38. doi:10.1016/j.pediatrneurol.2018.07.013 - DOI - PMC - PubMed
1. Pollack MM, Holubkov R, Funai T, et al. Pediatric intensive care outcomes: development of new morbidities during pediatric critical care. Pediatr Crit Care Med. Nov 2014;15(9):821–7. doi:10.1097/pcc.0000000000000250 - DOI - PMC - PubMed
1. Manning JC, Pinto NP, Rennick JE, Colville G, Curley MAQ. Conceptualizing Post Intensive Care Syndrome in Children-The PICS-p Framework. Pediatr Crit Care Med. Apr 2018;19(4):298–300. doi:10.1097/PCC.0000000000001476 - DOI - PubMed
1. Williams CN, Eriksson CO, Kirby A, et al. Hospital Mortality and Functional Outcomes in Pediatric Neurocritical Care. Hosp Pediatr. Dec 2019;9(12):958–966. doi:10.1542/hpeds.2019-0173 - DOI - PMC - PubMed

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[1] Hartman ME, Williams CN, Hall TA, Bosworth CC, Piantino JA. Post-Intensive-Care Syndrome for the Pediatric Neurologist. Pediatr Neurol. Jul 2020;108:47–53. doi:10.1016/j.pediatrneurol.2020.02.003 - DOI - PMC - PubMed

[2] Hartman ME, Williams CN, Hall TA, Bosworth CC, Piantino JA. Post-Intensive-Care Syndrome for the Pediatric Neurologist. Pediatr Neurol. Jul 2020;108:47–53. doi:10.1016/j.pediatrneurol.2020.02.003 - DOI - PMC - PubMed

[3] Williams CN, Piantino J, McEvoy C, Fino N, Eriksson CO. The Burden of Pediatric Neurocritical Care in the United States. Pediatr Neurol. Dec 2018;89:31–38. doi:10.1016/j.pediatrneurol.2018.07.013 - DOI - PMC - PubMed

[4] Williams CN, Piantino J, McEvoy C, Fino N, Eriksson CO. The Burden of Pediatric Neurocritical Care in the United States. Pediatr Neurol. Dec 2018;89:31–38. doi:10.1016/j.pediatrneurol.2018.07.013 - DOI - PMC - PubMed

[5] Pollack MM, Holubkov R, Funai T, et al. Pediatric intensive care outcomes: development of new morbidities during pediatric critical care. Pediatr Crit Care Med. Nov 2014;15(9):821–7. doi:10.1097/pcc.0000000000000250 - DOI - PMC - PubMed

[6] Pollack MM, Holubkov R, Funai T, et al. Pediatric intensive care outcomes: development of new morbidities during pediatric critical care. Pediatr Crit Care Med. Nov 2014;15(9):821–7. doi:10.1097/pcc.0000000000000250 - DOI - PMC - PubMed

[7] Manning JC, Pinto NP, Rennick JE, Colville G, Curley MAQ. Conceptualizing Post Intensive Care Syndrome in Children-The PICS-p Framework. Pediatr Crit Care Med. Apr 2018;19(4):298–300. doi:10.1097/PCC.0000000000001476 - DOI - PubMed

[8] Manning JC, Pinto NP, Rennick JE, Colville G, Curley MAQ. Conceptualizing Post Intensive Care Syndrome in Children-The PICS-p Framework. Pediatr Crit Care Med. Apr 2018;19(4):298–300. doi:10.1097/PCC.0000000000001476 - DOI - PubMed

[9] Williams CN, Eriksson CO, Kirby A, et al. Hospital Mortality and Functional Outcomes in Pediatric Neurocritical Care. Hosp Pediatr. Dec 2019;9(12):958–966. doi:10.1542/hpeds.2019-0173 - DOI - PMC - PubMed

[10] Williams CN, Eriksson CO, Kirby A, et al. Hospital Mortality and Functional Outcomes in Pediatric Neurocritical Care. Hosp Pediatr. Dec 2019;9(12):958–966. doi:10.1542/hpeds.2019-0173 - DOI - PMC - PubMed

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Continuing Care For Critically Ill Children Beyond Hospital Discharge: Current State of Follow-up

Affiliations

Continuing Care For Critically Ill Children Beyond Hospital Discharge: Current State of Follow-up

Authors

Affiliations

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Conflict of interest statement

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