Pediatric Chronic Critical Illness Research & Ethics

A Snapshot of Pediatric CCI Across the United States

Understanding how to adapt systems of care for children with chronic critical illness requires knowing how many of these patients account for acute care hospitalizations.

Objective

  • Determine number of children with chronic critical illness hospitalized in acute care pediatric beds across 6 pediatric centers.

Methodology & Progress

On one day, researchers at 6 pediatric medical centers across the U.S. collected data on all hospitalized infants and children meeting eligibility criteria for chronic critical illness.

Presentations

Chronically Critically Ill Children: Adapting Care for Patients with Very Long Hospitalizations. Department of Neonatology, Children’s National Medical Center

Publications

A Snapshot of Chronic Critical Illness in Pediatric Intensive Care Units. J Peds Intens Care 2021. Shapiro MC, Boss RD, Donohue PK, Weiss E, Madrigal V, Henderson CM on behalf of the Pediatric Chronic Critical Illness Collaborative

Rogozinski L, Young A, Grybauskas C, Donohue PK, Boss RD, Biondi E. Point Prevalence of Children Hospitalized with Chronic Critical Illness on the General Inpatient Units. Hosp Ped 2019;9(7):545-49.

Boss RD, Henderson CM, Weiss EM, Falck A, Madrigal V, Shapiro MC, Williams EP, Donohue PK on behalf of the Pediatric Chronic Critical Illness Collaborative. The Changing Landscape in Pediatric Hospitals: A multicenter study of how pediatric chronic critical illness impacts NICU throughput. Am J Perinat 2020

Low prevalence of palliative care and ethics consultations for children with chronic critical illness. Boss RD, Falck A, Goloff N, Hutton N, Miles A, Shapiro M, Weiss E, Donohue P on behalf of the Pediatric Chronic Critical Illness Collaborative. Acta Ped (2018)

Ruth A, Boss RD, Donohue P, Shapiro M, Raisanen J, Henderson CM. Living in the Hospital: The Vulnerability of Children with Chronic Critical Illness. J Clin Ethics 2020;31(4):340-352.

Core Team

Renee D. Boss, MD, MHS

Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics

Carrie M. Henderson, MD

University of Mississippi Medical Center

Pamela K. Donohue, ScD, MS

Johns Hopkins School of Medicine, Johns Hopkins Bloomberg School of Public Health

Elliott Weiss, MD

University of Washington School of Medicine

Vanessa Madrigal

Children’s National Medical Center

Miriam Shapiro, MD

University of Minnesota School of Medicine

Alison Falck, MD

University of Maryland School of Medicine

Erin P. Williams, MBE

Johns Hopkins Berman Institute of Bioethics, Columbia University Vagelos College of Physicians and Surgeons