Value of Patient-Family Advisory Councils

In this episode of the Society of Critical Care Medicine (SCCM) Podcast, host Elizabeth H. Mack, MD, MS, FCCM, speaks with Nadir Yehya, MD, MSCE, an attending physician in the Pediatric Sepsis Program and the Division of Critical Care Medicine at the Children's Hospital of Philadelphia in Philadelphia, Pennsylvania, USA. They discuss Dr. Yehya’s study, “Parent and Provider Perspectives on Short-Term Outcomes of Critically Ill Ventilated Children,” published in the September 2025 issue of Pediatric Critical Care Medicine. The study explores whether widely used composite clinical outcomes such as ventilator-free days truly reflect what families value most when their child is in the pediatric intensive care unit (PICU).

Dr. Yehya discusses how the project emerged from a long-standing question in pediatric critical care research: Are the outcomes we measure in clinical trials aligned with the priorities and lived experiences of families? Because mortality is low in pediatrics, composite short-term outcomes such as ventilator-free days, ICU-free days, and hospital-free days are commonly used. However, little is known about whether these metrics are truly patient- and family-centered.

Using survey data from parents and PICU clinicians, the study found strong agreement between parents and clinicians on the importance of minimizing duration of invasive mechanical ventilation. But parents and clinicians diverged on other short-term outcomes. Families ranked oxygen duration as more important than ICU or hospital length of stay, reflecting concerns about ongoing medical needs, missed work, and the possibility of going home on oxygen. Clinicians prioritized ICU and hospital days over oxygen use. Substantial variation was also found within both groups.

Dr. Yehya highlights the value of feedback from patient and family advisory councils in designing this type of research, explaining that such feedback informed the study’s instrument design and family approach. He calls for deeper investigation into post-discharge recovery, functional outcomes, and long-term developmental trajectories—areas families consistently identify as their greatest concerns.

Resources referenced in this episode:

• Parent and Provider Perspectives on Short-Term Outcomes of Critically Ill Ventilated Children (Shannon MM, et al. Pediatr Crit Care Med. 2025;26:e1149-e1153)