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Updated: Dec 10, 2025
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Published on: April 7, 2023
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Priority Outcomes in Critically Ill Children: A Patient and Parent Perspective
Nora Fayed1, Saoirse Cameron2, Douglas Fraser2
1Nora Fayed and Karen Choong contributed equally to the execution of this study and the writing of this manuscript. Nora Fayed is an assistant professor, Maha Wakim and Lily Chiu are occupational therapy students, School of Rehabilitation Therapy, Queen's University, Kingston, Ontario, Canada.
Summary
Patient priorities in pediatric critical care research include functioning and quality of life, which are often missed by standard clinical outcomes. Incorporating patient-centered outcomes is crucial for comprehensive recovery assessment.
Area of Science:
- Pediatric critical care medicine
- Patient-centered outcomes research
- Qualitative research methodology
Background:
- Research outcomes in pediatric critical care are typically researcher-defined.
- A gap exists between researcher-selected outcomes and patient/family priorities.
Purpose of the Study:
- Identify patient and family-prioritized outcomes after pediatric critical illness.
- Assess overlap between patient-centered and researcher-selected study outcomes.
Main Methods:
- Exploratory descriptive qualitative study nested within a longitudinal cohort study.
- Conducted in two pediatric intensive care units (PICUs).
- Utilized purposive sampling, naturalistic observation, and the ICF-CY framework for data analysis.
Main Results:
- Interviews with 21 participants 5.1 months post-PICU discharge revealed patient-centered outcomes focusing on functioning (physical, cognitive, emotional) and recovery factors (rehabilitation, environment, quality of life).
- Family-centered outcomes included parental psychosocial functioning and experience of care.
- Patient-centered functioning outcomes were adequately captured by study measures, but clinical outcomes did not align well.
Conclusions:
- Functioning and quality of life are paramount patient-centered outcomes during recovery from critical illness.
- Current pediatric intensive care unit (PICU) study endpoints inadequately capture these crucial patient-centered outcomes.
- There is a need to integrate patient- and family-centered outcomes and develop comprehensive measurement strategies in PICU research.
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