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Eight PICU Follow-Up Programs in the United States Established From 2013 to 2022: Report From the Pediatric Outcomes
Leslie A Dervan1,2, Mary Hartman3, Ericka L Fink4
1Division of Pediatric Critical Care Medicine, Department of Pediatrics, University of Washington, Seattle, WA.
Insights
Pediatric intensive care survivors face long-term health issues. This study reviews U.S. follow-up programs to help PICU teams improve care and support for these children.
Area of Science:
- Pediatric critical care medicine
- Post-intensive care syndrome-pediatrics (PICS-p)
- Healthcare delivery models
Background:
- Children surviving critical illness are at risk for post-intensive care syndrome-pediatrics (PICS-p).
- Pediatric intensive care unit (PICU) teams are well-positioned to address PICS-p due to their familiarity and motivation.
- Existing U.S. PICU follow-up programs offer valuable insights into care models.
Purpose of the Study:
- To describe various care models implemented by existing U.S. PICU follow-up programs.
- To inform PICU teams on developing infrastructure for PICS-p care.
- To support improved access to PICU follow-up care for pediatric survivors.
Main Methods:
- A virtual meeting was convened with leaders from eight U.S. PICU follow-up programs.
- Discussions were structured around target populations, interventions, administration, funding, and outcomes.
- Input was gathered from 125 members of the Pediatric Outcomes Studies after PICU (POST-PICU) network.
Main Results:
- Programs identified at-risk patients for physiologic, neurologic, and psychologic sequelae.
- Interventions included screening, referrals, and collaboration with existing healthcare teams.
- Funding significantly influenced program structure; many offered clinical and research services, using outcome tracking for advocacy.
Conclusions:
- PICU follow-up programs provide essential 'wraparound,' 'transition,' and 'connection' care.
- Information gathered can guide PICU teams in establishing education, screening, and support infrastructure.
- Further research and advocacy are crucial to enhance access to PICU follow-up care.
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.
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