Eight PICU Follow-Up Programs in the United States Established From 2013 to 2022: Report From the Pediatric Outcomes Studies After PICU (POST-PICU) Investigators

OBJECTIVES: – Children surviving critical illness are at risk for new morbidities collectively termed “post-intensive care syndrome-pediatrics” (PICS-p). Because PICU teams are familiar with PICS-p and motivated to improve patient outcomes, intensivists are ideally positioned to improve access to PICU follow-up care. We aimed to describe various models of care developed by existing U.S. PICU follow-up programs. DESIGN: – The Pediatric Outcomes Studies after PICU (POST-PICU) subgroup of the Pediatric Acute Lung Injury and Sepsis Investigators network convened a virtual meeting with presentations and discussion by 11 leaders of eight follow-up programs, structured using input from the 125 POST-PICU members including advance questions. SETTING: – Ninety-minute virtual meeting, September 2024. We recorded and transcribed the presentations and discussion to draft this report. PANEL PROCEEDINGS: – Each leader presented their program and participated in discussion, organized into three domains based on the provided questions: 1) the program’s target population and interventions; 2) program administration and funding; and 3) program outcomes. Each program aimed to identify patients considered at-risk for physiologic, neurologic, and/or psychologic PICU sequelae and to provide screening, referral to supportive or specialist services as indicated, and collaboration with their existing healthcare teams. Funding influenced program structure and processes. Many programs provided clinical services alongside services tied to research efforts. Tracking program outcomes helped programs advocate for long-term funding and institutional support. Panelists described their programs as providing “wraparound care, ” “transition care, ” and “connection”—supporting patients and families through different stages of the PICU and hospital stay, rehabilitation, and transition to home care. CONCLUSIONS: – This information can support PICU teams in developing infrastructure to provide clinically indicated education, screening, and support for their patients, as the PICU community engages in further research and advocacy to improve access to PICU follow-up care.