Understanding the ECMO, Recovery, and Outcome Experience of Pediatric Respiratory ECMO Survivors

Abstract Extracorporeal membrane oxygenation (ECMO) is deployed to support children with severe respiratory failure. Unlike neonatal and cardiac ECMO populations, childhood respiratory ECMO survivors are rarely studied as a distinct population, leading to gaps in our understanding of their experiences. This study aimed to describe the family and patient experiences and functional outcomes of childhood respiratory ECMO survivors. Retrospective, mixed-methods, single center cohort study of children who required ECMO for respiratory failure in the pediatric intensive care unit and survived to discharge from May 2014 to December 2020. Semi-structured interviews were conducted with parents, and functional assessments of children were conducted via Vineland Adaptive Behavior Scales, 3rd edition (VABS-3). Of 22 respiratory ECMO survivors, 15 (68%) were successfully contacted and 12 (55%) completed interviews. Median age was 7 years (IQR: 1-16) at cannulation and 12 years (IQR: 5-16) at interview. Interviews revealed the need for greater preparation before ECMO, and practitioner-led guidance and education during ECMO. Only 50% had a medical home. The magnitude of physical and psychological recovery was unexpected, and mental health needs continued after discharge. VABS-3 was assessed in 92% of participants and varied widely (median, 85, IQR: 74-107). Despite wide ranging outcomes, families shared difficulties surrounding rehabilitation, centralized care, and the emotional toll of their child’s illness. Families desired additional support before, during, and after ECMO, particularly anticipatory guidance. Psychiatric needs were underestimated. Understanding the challenges faced by survivors and their parents will enable pediatric intensivists to better advise families through all phases of ECMO.