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J Pediatr Intensive Care
DOI: 10.1055/s-0044-1800963
Original Article

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

Claire M. Hennigan
1   Department of Pediatrics, Columbia University Irving Medical Center, New York, New York, United States
,
Eva W. Cheung
1   Department of Pediatrics, Columbia University Irving Medical Center, New York, New York, United States
,
Annette P. Zygmunt
2   Department of Psychiatry, Columbia University Irving Medical Center, New York, New York, United States
,
Donna Garey
3   Department of Pediatrics, Creighton University School of Medicine, Phoenix Regional Campus, Phoenix, Arizona, United States
,
Marilyn C. Morris
1   Department of Pediatrics, Columbia University Irving Medical Center, New York, New York, United States
,
Andrew S. Geneslaw
1   Department of Pediatrics, Columbia University Irving Medical Center, New York, New York, United States
› Author Affiliations
Funding This study was supported in part by the Columbia University Department of Pediatrics Innovation Nucleation Fund. Dr. Geneslaw received support from the National Center for Advancing Translational Sciences, National Institutes of Health, through grant number: KL2TR001874.
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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.

Keywords

extracorporeal membrane oxygenation - respiratory failure - follow-up - family-centered - outcomes - pediatric

Note

This study was performed at NewYork-Presbyterian Morgan Stanley Children's Hospital, Columbia University Irving Medical Center, New York, New York, United States. Claire M. Hennigan is now a faculty member at NYU Langone Medical Center.


Authors' Contributions

C.M.H. conceptualized and designed the study, designed the data collection instruments, collected data, performed data analysis, drafted the initial manuscript, and critically reviewed and revised the manuscript.


E.W.C. advised on the design of the study, curated data, and critically reviewed and revised the manuscript.


A.P.Z. advised on the selection of the data collection instruments, supervised interpretation of VABS-3 data, and critically reviewed and revised the manuscript.


D.G. advised on design of the study and critically reviewed and revised the manuscript.


M.C.M. designed the data collection instruments and supervised data collection, supervised qualitative data analysis, and critically reviewed and revised the manuscript for important intellectual content.


A.S.G. conceptualized and designed the study, supervised data collection and analysis, supervised the project, and critically reviewed and revised the manuscript for important intellectual content.


All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.


Supplementary Material



Publication History

Received: 29 May 2024

Accepted: 30 October 2024

Article published online:
26 December 2024

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