Parent and provider perspectives on short-term outcomes of critically ill ventilated children

OBJECTIVES: As mortality is rare in pediatrics, alternative composite outcomes such as ventilator-free days (VFDs), PICU-free days, or hospital-free days, are often used in pediatric critical care research. However, it is unclear which of these nonmortality components of composite outcomes are prioritized by families, and thus reflect true patient-centered outcomes. We therefore aimed to determine and compare families’ and PICU providers’ priorities regarding outcomes for ventilated patients in the PICU. We hypothesized that families and providers would prioritize different nonmortality outcomes.

DESIGN: This is a single-center, prospective cross-sectional survey of immediate caregivers of children experiencing both invasive and noninvasive ventilation and asynchronously of PICU attending providers. Subjects were asked to rank, in order of priority, five nonmortality outcomes: duration of invasive ventilation, duration of invasive and noninvasive ventilation, duration of any oxygen support, PICU length of stay (LOS), and hospital LOS.

SETTING: Quaternary, academic PICU in urban setting.

SUBJECTS: We surveyed 50 adult caregivers and 30 PICU faculty.

INTEVENTIONS: Survey administration at a single timepoint.

MEASUREMENTS AND MAIN RESULTS: While both families (kappa = 0.11) and providers (kappa = 0.15) demonstrated poor overall intra-group agreement of rankings, most families and providers ranked duration of invasive ventilation highest, and duration of invasive and noninvasive ventilation second highest. However, families ranked their subsequent priorities (in order) as the duration of all oxygen support, PICU LOS, and then hospital LOS. In contrast, providers ranked PICU LOS, then hospital LOS, and lastly, duration of all oxygen support.

CONCLUSIONS: In a study that directly assessed family and provider preferences of nonmortality outcomes, we found that duration of invasive ventilation is indeed a patient- and family-centered outcome measure, while LOS is less prioritized in intubated PICU patients. This suggests that composites based on ventilator duration, such as VFDs, are indeed patient-centered.

National Heart, Lung and Blood Institute

Megan M Shannon, Garrett Keim, Michael O Harhay, Nadir Yehya