Shannon Megan M, Keim Garrett, Harhay Michael O, Yehya Nadir
Department of Anesthesiology and Critical Care Medicine, Children's Hospital of Philadelphia and University of Pennsylvania, Philadelphia, PA.
Department of Biostatistics, Epidemiology and Informatics, University of Pennsylvania, Perelman School of Medicine, Philadelphia, PA.
Pediatr Crit Care Med. 2025 Jul 22. doi: 10.1097/PCC.0000000000003794.
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.
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.
Quaternary, academic PICU in urban setting.
We surveyed 50 adult caregivers and 30 PICU faculty.
Survey administration at a single timepoint.
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.
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.
由于儿科死亡率较低，儿科重症监护研究中常使用其他综合结局指标，如无呼吸机天数（VFDs）、无儿科重症监护病房（PICU）天数或无住院天数。然而，尚不清楚这些综合结局指标中的非死亡组成部分哪些是家庭优先考虑的，从而反映真正以患者为中心的结局。因此，我们旨在确定并比较家庭和PICU医护人员对PICU中接受通气治疗患者结局的优先排序。我们假设家庭和医护人员会优先考虑不同的非死亡结局。
这是一项针对经历有创和无创通气的儿童的直接照料者以及PICU主治医护人员的单中心前瞻性横断面调查。受试者被要求按优先顺序对五个非死亡结局进行排序：有创通气持续时间、有创和无创通气持续时间、任何氧疗支持持续时间、PICU住院时长（LOS）以及医院住院时长。
城市环境中的四级学术性PICU。
我们调查了50名成年照料者和30名PICU医护人员。
在单个时间点进行问卷调查。
虽然家庭（kappa = 0.11）和医护人员（kappa = 0.15）在组内排序的总体一致性都较差，但大多数家庭和医护人员将有创通气持续时间排在最高位，将有创和无创通气持续时间排在第二位。然而，家庭随后的优先排序（依次）是所有氧疗支持持续时间、PICU住院时长，然后是医院住院时长。相比之下，医护人员将PICU住院时长排在首位，然后是医院住院时长，最后是所有氧疗支持持续时间。
在一项直接评估家庭和医护人员对非死亡结局偏好的研究中，我们发现有创通气持续时间确实是以患者和家庭为中心的结局指标，而在接受气管插管的PICU患者中，住院时长的优先级较低。这表明基于通气持续时间的综合指标，如VFDs，确实是以患者为中心的。
