The 1-Year Follow-Up Clinic for Neonates and Children After Respiratory Extracorporeal Membrane Oxygenation Support: A 10-Year Single Institution Experience*

Abstract

All extracorporeal membrane oxygenation survivors need follow-up either at the extracorporeal membrane oxygenation center or in their community, as evidenced by the 1-year follow-up data. Our 1-year extracorporeal membrane oxygenation follow-up clinic provides an opportunity to engage with families, identify neurodevelopmental concerns, and signpost to appropriate services. Of concern, one third of survivors are lost to follow-up, some with an acute neurologic event on extracorporeal membrane oxygenation, a significant risk factor. A consensus-based standardized national follow-up program is vital.

Tracheostomy and long‐term mechanical ventilation in children after veno‐venous extracorporeal membrane oxygenation

“…Our data did not capture timing of tracheostomy placement in relation to ECMO cannulation/decannulation, nor did it capture the number of extubation attempts. While discharge on long‐term mechanical ventilation improves survival to ICU and hospital discharge, our data do not further describe outcome measures such as patient and family well‐being, long‐term quality of life, and functional status, all of which are affected by treatment with ECMO and by long‐term mechanical ventilation 30–33 . These are critical considerations that parents and clinicians should take into account when making the decision to support a child with ECMO.…”

Hematologic concerns in extracorporeal membrane oxygenation

“…Thirty percent of patients followed up were identified as having neurodevelopmental concerns. Having had an acute neurologic event on ECMO was the only identified risk factor 149 . In a 7‐year follow‐up of critically ill neonates randomly assigned to ECMO versus non‐ECMO treatment, survivors in both groups had similar neuromotor impairment and hearing deficits, and the non‐ECMO treatment group had an increased rate of behavioral issues and respiratory problems at the time of follow‐up 150 .…”

“…Survival to decannulation misses significant later morbidity and mortality, and as the longest ECMO run reported now has reached 605 days, 30‐ and 90‐day mortality also may miss the significance, difficulties, demands, and consequence of long ECMO runs 87,152 . In pediatric patients, there is good demonstration that while mortality rates on ECMO are high, there is also significant impact and burden from the long‐term developmental effects that follow 149 . We have not yet adequately elucidated the effect disease process versus ECMO complications or ECMO techniques has on long‐term development 87 .…”

Improving Long-Term Outcomes After Extracorporeal Membrane Oxygenation: From Observational Follow-Up Programs Toward Risk Stratification

“…Only very few ECMO centers in the world provide comprehensive multi-disciplinary follow up right from the time of discharge from hospital to adolescence. The 10 years' experience of a single center follow-up program in the UK for children supported for respiratory ECMO has recently been published ( 97 ). Follow-up was offered to all 194 survivors at the age of 1 year.…”

“…Follow-up was offered to all 194 survivors at the age of 1 year. Neurodevelopmental problems were identified in 30% of 98 participants, but alarmingly, 66 of 96 non-participants (34% of all ECMO survivors) were completely lost to follow-up and did not seem to attend local health care services ( 97 ). Most data on long-term outcomes after neonatal ECMO have become available from a nationwide longitudinal follow-up program in the Netherlands, which is offered as standard of care to all neonates and children discharged after ECMO treatment ( 98 ).…”