Supporting the next generation of heart patients

Dr. Andrew Mackie’s research aims to smooth the risky transition from children’s hospital to adult clinic for Canada’s youth.

Like most young adults, Sara Rodrigue faced a host of new demands when she turned 18, from starting university with its new academic and social challenges to assuming greater independence in her day-to-day life.

However, unlike her peers, she also became responsible for managing her complex health conditions on her own. Born with three congenital heart defects (CHDs), Rodrigue had her first surgery as a newborn and two more in childhood. By adolescence, her condition was stable.

Rodrigue wasn’t worried about transitioning out of pediatric care until her first appointment with the new cardiologist. “I assumed it would go well, as all of the previous appointments at the Stollery Children’s Hospital had gone,” she says. But things did not go according to plan.

After sitting alone in a waiting room surrounded by senior citizens, she got some unexpected news: her condition had worsened, and she might need major surgery soon. “It was shocking,” she says, all the more so in a new environment with a new doctor.

Rodrigue’s experience is far from unique. Today, more than 90 per cent of children born with CHD survive into adulthood — a remarkable success story driven by decades of advances in pediatric cardiology research at medical centres like the Stollery Children’s Hospital in Edmonton. But that success has created a new challenge: ensuring young people continue to receive the medical care they need once they age out of the pediatric system.

Teenagers don’t magically develop self-management skills. Their brains are still developing.

— DR. ANDREW MACKIE

Dr. Andrew Mackie, a pediatric cardiologist at the Stollery who treated Rodrigue, is conducting research to close that gap. He first became aware of the problem through his own clinical practice, when patients who should have been receiving ongoing care returned years later — sometimes through the emergency department — with serious complications.

“We don’t want young people dropping out of care,” Mackie says, “because that leads to late recognition of complications and poorer long-term outcomes.”

Historically, the transition from pediatric to adult care has often been treated as a single event — typically at age 18 — rather than a gradual process. As a result, many teens with CHD lack the knowledge and skills to independently manage their condition.

“Teenagers don’t magically develop self-management skills,” Mackie says. “Their brains are still developing. We can’t expect them to function like fully independent adults overnight.”

Through a series of studies known as CHAPTER (Congenital Heart Adolescents Participating in Transition Evaluation Research), Mackie and his team demonstrated that structured, nurse-led education can significantly improve adolescents’ understanding of their condition and their ability to manage appointments, medications and communication with health-care providers. The research also showed that patients should begin preparing for the transition at age 13 or 14.

Long-standing support from the Stollery Children’s Hospital Foundation (SCHF) through the Women and Children’s Health Research Institute (WCHRI) at the U of A has been critical in advancing this work. It helped him build a strong research foundation and secure significant funding from external agencies, including the Canadian Institutes of Health Research.

A major milestone came in 2019, when Mackie was named a Stollery Science Lab Distinguished Researcher. The $750,000 award from the SCHF allowed him to expand his research program, including adding a focus on Indigenous and immigrant youth, who are at higher risk of falling out of care during transitions.

Mackie notes that he has also benefited from WCHRI’s research services, including support for clinical trials and data coordination. His team works closely with Dr. Padma Kaul, academic lead of WCHRI’s AI + Data Hub and Alberta principal investigator for the Canadian Mother-Child Cohort, a dataset capturing more than 400,000 pregnancies in Alberta between 2009 and 2018.

That collaboration has allowed Mackie to expand to research about the care of women with CHD during pregnancy, a high-risk period that remains under-studied. Using population-level data, his team is identifying gaps in care and barriers to accessing cardiology services to improve health outcomes for both mothers and babies.

For Rodrigue, now 27 and a registered nurse, Mackie’s research is reassuring.

“I wish I’d had that kind of support, but I’m really glad they’re doing it now,” she says. “It could make a huge difference for someone else.”

Story by Caitlin Crawshaw
Photos by William Au

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