More and more, kids with heart problems are making it. And happily, from the day they are discharged from the hospital, many mature to adulthood—living decades beyond what was expected in previous generations.
However, such success sometimes comes at a high price. Some patients struggle with developmental and neurological problems. Others have lingering heart problems, such as heart beat irregularities, that plague them as they mature. And many struggle with other damaged organs, the result of years of poor blood flow.
“It’s simply not enough any more to get them out the door,” said Dr. Matt Oster, Cardiac Outcomes Researcher. “ We really need to study what kind of developmental problems these kids are having – and figure out what we can do earlier in the process to prevent these sometimes terrible results.”
Last year, Oster and his colleagues set three key goals to specifically address the long-term needs and concerns of pediatric cardiac patients and their families, including:
- Determine what gives most cardiac pediatric patients an improved quality of life
- Prevent later complications tied to their heart conditions
- Harness electronic medical records to do research and improve long-term follow-up care for these patients
“We needed to think about ways to improve the long-term outcomes of our kids.,” said Dr. Matt Oster, also a pediatric cardiologist at Children’s Healthcare of Atlanta.
Already, there are nearly 30 projects in the works – a research mixture of public health policy, clinical review and technical innovation. “We’ve got tons of data,” he said, “and lots of ideas.”
Oster points to one project, for example, that is evaluating whether all newborns should receive a screening test that could detect previously missed heart defects. The test, called pulse oximetry screening—a method in which doctors or nurses put a probe at the tip of the finger and the foot to measure the level of oxygen—could detect problems in a newborn. If it consistently finds low oxygen levels, that could indicate a heart defect.
But does it make sense for all newborns to undergo this for the rare chance of a missed heart defect - which could increase health care costs and, in some cases, needlessly worry new parents?
This is a great example of the kinds of research challenges the center faces, Oster said. “We have to measure whether it’s medically effective and cost-effective.”
In addition, the center is looking at clinical practices to determine whether it can find trends of consistently good long-term outcomes – or if treatment at a certain point of a child’s development results in better outcomes when they’re adults.
“Our results are improving,” Oster said. “But now the question is, ‘How high can we go?’”