Cydni N Williams1,2, Trevor A Hall3,2, 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 Woodruff20,21, Kristin P Guilliams7,20,22. 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.
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.
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.
Authors: Jonathan N Dodd; Trevor A Hall; Kristin Guilliams; Réjean M Guerriero; Amanda Wagner; Sara Malone; Cydni N Williams; Mary E Hartman; Juan Piantino Journal: Pediatr Neurol Date: 2018-09-18 Impact factor: 3.372
Authors: Neethi P Pinto; Elizabeth W Rhinesmith; Tae Yeon Kim; Peter H Ladner; Murray M Pollack Journal: Pediatr Crit Care Med Date: 2017-03 Impact factor: 3.624
Authors: Frank J Attenello; Alvin Ng; Timothy Wen; Steven Y Cen; Nerses Sanossian; Arun P Amar; Gabriel Zada; Mark D Krieger; J Gordon McComb; William J Mack Journal: J Neurosurg Pediatr Date: 2015-03-20 Impact factor: 2.375
Authors: Mary E Hartman; Cydni N Williams; Trevor A Hall; Christopher C Bosworth; Juan A Piantino Journal: Pediatr Neurol Date: 2020-02-20 Impact factor: 3.372
Authors: Bradley S Marino; Paul H Lipkin; Jane W Newburger; Georgina Peacock; Marsha Gerdes; J William Gaynor; Kathleen A Mussatto; Karen Uzark; Caren S Goldberg; Walter H Johnson; Jennifer Li; Sabrina E Smith; David C Bellinger; William T Mahle Journal: Circulation Date: 2012-07-30 Impact factor: 29.690
Authors: Florian Von Borell; Juliane Engel; Felix Neunhoeffer; Florian Hoffmann; Jörg Michel Journal: Front Pediatr Date: 2022-05-31 Impact factor: 3.569