Follow-up of Pediatric Respiratory ECMO Survivors: Understanding the Recovery Experience and Examining Functional Outcomes

Background: Extracorporeal membrane oxygenation (ECMO) is an established treatment for severe cardiopulmonary failure in children. Although mortality remains high, ten-year survival approaches 90% for those who survive to hospital discharge, which has placed a new emphasis on morbidity and its impact on survivors.

Up to 10% of children suffer major neurologic injury following ECMO, and as many as 50% of cardiac and neonatal ECMO survivors experience more subtle neurodevelopmental and functional problems. While cardiac and especially neonatal ECMO survivors receive neurodevelopmental evaluation through established follow-up programs, the respiratory ECMO population lacks a clear follow-up path or provider. This has limited understanding of the type and degree of impairment experienced by respiratory ECMO patients, as well as the challenges faced by patients and families as they return home. Better understanding of the recovery course after respiratory ECMO is essential to inform follow-up guidelines and improve the counseling provided by critical care physicians.

Methods: Cross-sectional, mixed-methods study of respiratory ECMO survivors from a single regional pediatric ECMO referral center. All survivors less than 21 years of age who received ECMO for respiratory failure in the PICU from 2014 to 2020 were eligible for inclusion. Neonates and children who required ECMO for cardiac indications or during CPR were excluded. Parental experiences of both ECMO and the home recovery period were explored via semi-structured telephone interviews. Functional status was assessed via the Vineland Adaptive Behavior Scales, 3rd Edition (VABS-3) Parent/Caregiver Form.

Results: Of 300 ECMO patients, 96 (32%) required ECMO for respiratory indications, of whom 22 (23%) survived to discharge and were eligible for inclusion. Age at ECMO ranged from 3 months to 20 years. Diagnoses included ARDS (10, 45%), pulmonary hypertension (7, 32%), status asthmaticus (2, 9%), airway pathology (2, 9%), and cystic fibrosis (1, 5%). Fourteen patients (63%) were successfully contacted and 8 interviews have been completed. Common themes from interviews included the visual shock of an ECMO circuit, desire for anticipatory communication before ECMO, uncertainty regarding functional outcome, parental psychosocial stress, and variability in follow-up therapies and services provided to survivors. The need for mental health counseling emerged as a theme among those who experienced ECMO as young adults. VABS-3 results (Table) varied widely, with survivor mean scores across each domain approximately 1.5 SD below standard scores.

Conclusion: Children who survive respiratory ECMO are united by shared challenges surrounding rehabilitation and therapies to regain function, parental and adolescent psychosocial stress, and a desire to know what to expect following ECMO. Functional scores are generally below population norms, but covered a wide range. Increased understanding of these challenges and limitations will enable us to better advise and assist families during and after ECMO.