Cardiac patients supported by ECMO as infants report good health, but lower quality of life years later

Adults who struggled with heart disease as infants and had to be supported by extracorporeal membrane oxygenation reported positive health outcomes but lower quality of life 18 years later, according to a study published in Pediatric Critical Care Medicine.

During the nearly two-decade-long study, Matthew D. Elias, MD, and colleagues focused on patients at the Children’s Hospital of Philadelphia (CHOP) whose cardiac disease was managed by extracorporeal membrane oxygenation (ECMO) between 1995 and 2012. The purpose of the research was to determine the long-term outcomes of ECMO on infants as they grew up, Elias and co-authors wrote in the study, since there isn’t much information about how the treatment affects patients’ quality of life.

ECMO is an important option for short-term care in children with cardiovascular disease, the authors wrote, and its use in tertiary-care hospitals has increased over the past few decades. Still, mortality and morbidity rates have stayed static, resulting in a survival rate to discharge of between 30 and 70 percent. Other studies have discovered long-term neurodevelopmental abnormalities in 35 to 59 percent of all patients who undergo the treatment.

“The use of ECMO has increased considerably over the years for children with heart disease,” Elias told Cardiovascular Business. “However, there have been very few studies evaluating long-term outcomes after ECMO, particularly quality of life and neurodevelopmental outcomes. With the large number of children with heart disease treated at CHOP over the years, we were able to review 396 patients who were managed with ECMO over an 18-year period. To our knowledge, this study represents one of the largest cohorts of pediatric ECMO patients undergoing detailed assessment of long-term outcomes and quality of life.”

The majority of the 396 patients in Elias and colleagues’ study were white (66.4 percent) and male (59.1 percent). The average age at cannulation was just 78 days, or just over 11 weeks, with children weighing around 4.2 kg at the time of treatment. Eighty-six percent of the study pool, the authors wrote, were referred for ECMO due to a diagnosis of congenital heart disease.

At a six-year follow-up, the researchers found the majority of patients who had been on ECMO were deceased. A total 66 percent of the population had died, including 38 deaths after hospital discharge, the study stated.

Of the survivors, 65 completed a phone survey about their quality of life and 33 filled out a written survey. The reports were completed by both patients and parents and involved questions about physical limitations, health status, neurological health and school.

The study’s authors found no evidence of ECMO-related negative outcomes in their univariate analyses, though negative clinical outcomes resulting in “fair” or “poor” health were present in 18 percent of patients, and children reported lower quality of life compared to their healthy counterparts. Still, the majority of the cohort reported positive outcomes, including good health, lack of physical limitations and average performance in school after ECMO.

“I spent a significant amount of time on the phone with the patients’ families who completed the verbal survey, and it was extremely helpful and rewarding to hear about their experiences with ECMO and about their child’s progress over the years,” Elias said. “Families were generally eager to share these stories and experiences, and the majority of these families reported positive outcomes.”

Elias said the heart team at CHOP will continue to work on advancing the field of pediatric cardiology, keeping an emphasis on long-term outcomes in those patients.

“The long-term results in this study suggested favorable outcomes among survivors of ECMO,” he said. “These results should allow for improved family counseling with data-driven discussions of their children’s long-term quality of life and realistic long-term expectations when ECMO is a possibility.”