Long-Term Morbidity and Mortality in Children After Cardiac Extracorporeal Membrane Oxygenation*

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Enormous progress has been made in the treatment of congenital heart disease (CHD) over the last few decades (1, 2), with many centers now reporting less than 1%–2% mortality for operative repair. One tool that has facilitated this progress in more complex forms of CHD is extracorporeal membrane oxygenation (ECMO). ECMO was first used as mechanical circulatory support in 1972, in a child with low cardiac output syndrome following a Mustard procedure for transposition of the great vessels (3, 4). Forty-five years later, data on over 21,000 children have been reported to the Extracorporeal Life Support Organization (ELSO) Registry after they received ECMO for cardiac indications, including cardiac arrest. Survival to hospital discharge was 45% (5). However, it has taken time for researchers and clinicians to look beyond survival to discharge. Now, progressively more research focuses on long-term neurodevelopmental outcomes in both CHD and ECMO patients, as well as late mortality (6).
In this issue of Pediatric Critical Care Medicine, Elias et al (7) report their single-center experience of long-term follow-up of cardiac ECMO patients. Over an 18-year period, 43% of 396 patients survived to hospital discharge. At a median duration of 6 years after discharge, only a third of the original cohort was alive. These sobering figures are similar to other groups’ published experience (8). Although the majority of survivors were reported to have positive outcomes in terms of physical ability and quality of life, the overall morbidity in the group was high. Over half had seen a neurologist, and nearly one fifth reported that they required ongoing neurologic follow-up. Over a third required allied health support such as speech therapy, physiotherapy, or occupational therapy. Nearly half of the survivors had learning disabilities, although this term is very broad and can be applied to any barrier to learning, including problems with concentration, memory, or processing skills. Verbal interviews or written surveys such as those used by the authors would not be as accurate in ascertaining the various types of learning problems as comprehensive cognitive, neuropsychological, and achievement assessments. Since this study only provided a single time-point survey of outcomes, the authors were not able to outline the developmental trajectory of these early learning issues, which may change over time (9).
The study highlights that comprehensive care provision for patients after ECMO should not finish after hospital discharge and suggests that the sequelae from critical illness and ECMO have ramifications years later. Many of the survivors in this study would need an individualized education plan and other therapies requiring significant financial commitment and coordination of care. Children with learning difficulties can be helped with therapy, but a lack of treatment during sensitive periods of neurodevelopment may require significant societal resources later in life. The study underscores the need to periodically screen all ECMO survivors for neurodevelopmental delay and learning difficulties.
The authors were unable to demonstrate any specific risk factors for poor long-term outcomes. It would have been interesting to compare these patients with a matched cohort of CHD patients who did not receive ECMO in order to assess the additional rates of complications that ECMO may be associated with. It was also interesting to note that, although the quality of life scores were lower than a healthy population, the scores were comparable to or higher than those in other studies of cardiac ECMO (10) and not that dissimilar to children with complex heart disease.
The study suffered from a number of limitations. The response rate was only 58%, and this may have biased the results in a number of ways.

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