Pediatric Chronic Critical Illness Collaborative

Connecting researchers and trainees to increase quantity, quality, and impact of research about care for children with chronic critical illness

A growing number of children survive serious illness but develop dependence on medical technologies and have repeated and prolonged hospitalizations.  These “chronically critically ill” children are the sickest of children with medical complexity.

Johns Hopkins is home to the Pediatric Chronic Critical Illness (PCCI) Collaborative, an interdisciplinary group of individuals dedicated to research and practice that supports children with PCCI and their families. Researchers, clinicians and parents from around the United States meet regularly and collaborate on research projects related to PCCI.

Any researcher interested PCCI is invited to join the PCCI Collaborative.  To get on our email list please send a request to Dr. Renee Boss.

PCCI Collaborative members represent:

  • Boston Children’s Hospital
  • Children’s National Medical Center
  • Columbia University Vagelos College of Physicians and Surgeons
  • Johns Hopkins Berman Institute of Bioethics
  • Johns Hopkins School of Medicine
  • Johns Hopkins Bloomberg School of Public Health
  • Lurie Children’s Hospital
  • Seattle Children’s Hospital and Research Institute
  • Jude Children’s Research Hospital
  • University of Maryland Medical Center
  • University of Minnesota Department of Pediatrics
  • University of Mississippi Medical Center

Current PCCI Collaborative Projects

Raising Children with Medical Complexity: Issues in Housing and Household Expenses
Assessing the housing challenges for children with special health care needs in the State of Maryland
Building Clinician-Parent Partnerships to Improve Care for Chronically Critically Ill Children
Designing targeted, innovative educational interventions to optimize patient well-being, empower family partners, and harness hospital resources
Through the Family’s Lens
Identifying opportunities to optimize the home environment for children with medical complexity

Past PCCI Collaborative Projects

Pediatric Home Health Care for Children with Pediatric Chronic Critical Illness

Documenting pediatric home health care barriers and facilitators to help children live at home with their families.

Click here to learn more about this project.

A Snapshot of Pediatric Chronic Critical Illness in the United States

Assessing the point prevalence of pediatric chronic critical illness at six academic pediatric referral centers in the United States.

Click here to learn more about this project.

Stakeholder Perspectives of Pediatric Chronic Critical Illness

Highlighting concerns of experts in pediatric chronic critical illness (e.g. providers and parents).

Project Lead

Renee Boss, MD, MHS
Rembrandt Foundation Professor of Pediatric Palliative Care