Attending Physician Children's Hospital of Philadelphia Cherry Hill, NJ, United States
Introduction: Mortality is prioritized in critical care studies, and is invariably a component of composite outcomes. Composites, such as ventilator-free days, combine mortality with other outcomes, such as duration of mechanical ventilation (MV). However, little research has been done to evaluate what outcomes patients’ families and pediatric intensive care unit (PICU) providers prioritize for intubated patients. Therefore, we aimed to determine families’ and providers’ priorities regarding outcomes for ventilated PICU patients. We hypothesized that families and providers prioritize different non-mortality outcomes.
Methods: We conducted a prospective cohort study of families and PICU faculty between 1/2023 and 6/2023 at the Children’s Hospital of Philadelphia. Eligible families were identified by screening newly intubated PICU patients, and were approached once their child had experienced both MV and non-invasive ventilation (NIV). We excluded parents < 18 years old, patients who were wards of the state, and those at end of life. Families were provided with a short survey instructing them to rank 5 non-mortality outcomes in order of their personal priority: duration of MV, duration of MV + NIV, duration of all oxygen support, PICU length of stay (LOS), and hospital LOS. PICU faculty were provided with the same survey and instructions. Responses were assessed for agreement within (Krippendorff’s alpha) and between (rank-sum test) the two groups.
Results: A total of 26 families and 14 providers were included. While both families (alpha = 0.29) and providers (alpha = 0.35) demonstrated poor overall agreement of rankings, most families (69%) and providers (64%) ranked duration of MV highest and MV + NIV second. However, families ranked their subsequent priorities as duration of all oxygen support, PICU LOS, and lastly hospital LOS. Providers ranked PICU LOS, then hospital LOS, and lastly duration of all oxygen support. Families scored MV + NIV (p=0.029) and duration of all oxygen support (p < 0.001) higher than did providers.
Conclusions: Families and PICU providers have internal variability in prioritizing outcomes for ventilated patients, and disagreement after duration of MV and MV + NIV. Understanding both families’ and providers’ priorities is crucial for designing valid composites for future studies.
