An 18th birthday means grown-up privileges and adult opportunities. For teens with congenital heart disease, it also brings an abrupt end to their time in the pediatric medical system and the uncomfortable new reality of taking responsibility for their health.
But doctors and researchers at the University of Alberta and Stollery Children’s Hospital are aiming to ease that difficult transition by helping teens understand their condition, its future complications and how to advocate for themselves.
“Studies have shown consistently that most adolescents have very little knowledge of their congenital heart disease. And without knowledge of your heart condition and what the future might bring, it’s very difficult to enter the adult health-care system,” said Andrew Mackie, a pediatric cardiologist, Stollery Science Lab Distinguished Researcher and professor in the U of A’s Department of Pediatrics.
“They are the decision-makers — whether or not they are fully equipped to be decision-makers.”
About one in 100 babies is born with a heart defect and more than half of those will have surgery within months.
By the time they reach their teen years, visits to the cardiologist could be as infrequent as once every three years, Mackie said.
For parents, the passage of time blurs what they know about their child's heart defect and its lifelong ramifications. Pediatric cardiologists, meanwhile, often just don't have the time for deeper conversations, he noted.
Tackling that knowledge gap was the goal behind a series of clinical trials Mackie has led over the past decade. Researchers wondered whether nurse-led interventions — one-on-one sessions involving videos, role-playing and plain talk — could prepare teens for that inevitable transfer into the adult system.
The first two clinical trials focused on heart patients aged 15 to 17 and tackled the nuts and bolts of what they need to know before aging out of pediatric health care.
The third study was with younger teens. Funded by the Stollery Children’s Hospital Foundation through the Women and Children’s Health Research Institute, the study involved 60 teen patients aged 13 or 14 with moderate or complex heart conditions.
“Most of them have the capacity to start learning about their heart defect,” Mackie said about the younger cohort. “Most have the capacity to start taking some responsibility for daily health-care behaviours, such as taking your medication independent of your parent handing it to you.”
Half of the study participants received usual care from their cardiologist. The rest had their usual appointment plus a one-hour session with registered nurse Jody Gingrich, transition co-ordinator for the Stollery’s pediatric cardiology clinic.
The researchers looked at how the teens scored on questionnaires given one and six months later. Those who had the teaching sessions scored better, especially in explaining their medical history and acting independently at medical appointments.
“Nobody else knows what’s going on with your body except for you," Gingrich said of her teaching approach with the younger teens. "You need to tell your parents. You need to learn how to speak up, advocate for yourself.”
Gingrich’s position as transition co-ordinator exists in part due to the success of Mackie’s studies. Her work doesn’t currently include 13- and 14-year-old patients, but it will.
Sessions with the older teens get straight to the point: an anatomy lesson, a recap of the defect, the importance of the medications, and potential risks associated with sex, drugs and tattoos.
“We’ve often found that these kids have already made those decisions,” Gingrich said about the lifestyle warnings. “We’ve missed the window.”
Starting younger means Gingrich can take a gentler approach, building knowledge — and relationships — over many sessions. Those are the kids, she said, who will reach out to her for support when they need help or a listening ear.
“I tell these kids, ‘I don’t care if you are 15 or 25, I am there for you as a resource," she said.
"My job is to transition you. And transition doesn’t happen the morning you turn 18.”