AHA.18: What needs to change to improve CHD outcomes in kids

Under the United Nations’ Sustainable Development Goals, a blueprint for global well-being penned in 2015, officials aim to end all preventable deaths in newborns and children under 5 by 2030. And to Jackie Boucher, MS, BS, president of Children’s HealthLink in Minneapolis, that means better understanding congenital heart disease (CHD).

“Under-5 mortality rates are decreasing over time,” Boucher explained. “A lot of that is caused from improvements in tuberculosis or malaria, but children born with heart disease remains constant. So it’s becoming more visible as the communicable diseases decrease.”

Boucher said, according to the UN, “very few” countries are on target to meet the 2030 goals. Congenital heart defects are now the No. 1 cause of death in adults under 30, and 10 children with CHD are born every five minutes. One of those ten kids won’t have access to the care they need—something Boucher identified as a major barrier to overcoming CHD.

CHD has an access problem, Boucher said, and it’s apparent when comparing lower-income countries to developed nations like the U.S. and Western Europe. While in North America there’s one cardiac surgeon per 3.5 million people, in Africa that figure is one per 38 million. Just 7 percent of kids diagnosed with CHD have access to necessary surgery.

Diagnosis itself can be an issue, too, since underdeveloped countries often lack a well-qualified medical force.

“I think one of the challenges that was really clear at the UN meetings back in September [is that] healthcare systems are constrained in terms of prioritizing healthcare needs of their population and building out that both infrastructure and workforce and sort of addressing all the different issues related to increasing access to care, especially for these children born with heart disease,” Boucher said.

Even if every low-income country could recruit a qualified cardiologist to take on each CHD case that came their way, Boucher said the healthcare system needs to consider low-income families who may not be able to afford treatment as is. Hospital bills themselves are pricey, but Boucher said it’s also important to take into account the possibility of job loss, loss of productivity and lack of disposable income that comes with caring for a sick child full-time.

Boucher said innovation for new technologies will be important in coming years to could reduce the costs associated with CHD, as will increased financing from organizations like multilateral agencies, the WHO, local governments and ministries of health. She said it would be helpful for hospitals in these lower-income countries to track and report their financial data, “such that analyses can be made on the cost of scaling up care for children with heart disease.”

Perhaps most important to Boucher is building up a stronger pediatric cardiology workforce—one saturated with representatives from ministries of health, finance and education, regional professional bodies and civil society and patient advocates. Expansion programs should also include opportunities for medical professionals to grow and learn within their sector.

“Different teams have different needs,” Boucher said. “Some teams that we’re working with, it’s more about the team collaboration and communication, and how do we work with the team in terms of improving their progress. In other areas, it’s more knowledge and skills training. And I think building that culture of quality improvement can really help the team in terms of collaboration and improving their outcomes, and it spills over into other areas in the hospital, as well.”