Lifelong care for congenital heart disease patients

Dr. Andrew Mackie loves his work as a pediatric cardiologist, especially treating children born with heart defects. “So much happens between newborn and age 17. It's rewarding to see children grow up to be relatively healthy adolescents,” says Dr. Mackie, a professor of pediatrics at the University of Alberta and cardiologist at Stollery Children’s Hospital in Edmonton.

The outlook for kids with congenital heart disease (CHD) has improved dramatically over recent decades. Nine out of 10 now survive to adulthood, thanks to advances in diagnosis, surgery and pre- and post-operative care.

While these innovations can correct many complex heart defects, they are not a cure. Most patients need specialized follow-ups throughout their lives, as new heart problems can appear at any age.

It’s not easy growing up with CHD. Anxiety and depression are about three times more common in adolescents with CHD than in others, Dr. Mackie says.

“It can relate in part to feeling isolation — many don't know anyone else who lives with what they live with — the stigma of having a scar on their chest, and fear of premature death, which is a real possibility for some of them,” he says. Some kids are nervous about participating in physical activity or may be protected by anxious parents — leading to a higher risk of other health conditions.

As kids with CHD live longer, they also face new challenges — like transitioning to adult cardiac care from a specialized pediatric clinic.

It’s hard to leave a familiar environment and establish new relationships, Dr. Mackie says. Navigating a complex system and managing appointments and prescriptions takes skills and knowledge they may not have. The difficulties can be even greater for young people who live in remote areas or face socio-economic or cultural barriers.

All this means some patients experience lapses in care, putting their heart health at risk, Dr. Mackie says. “We invest so much in our infants and children with congenital heart disease, that not setting them up for success in adulthood seems like a huge missed opportunity.”

To find solutions, Dr. Mackie is leading a multi-disciplinary team in an exciting research program called Optimizing Care Transitions Across the Lifespan in Congenital Heart Disease. They were awarded one of three Congenital Heart Disease Team Grants, co-funded by Heart & Stroke donors, together with Brain Canada and the Canadian Institutes of Health Research.  

“The whole goal here is to improve the experience of patients and families, reduce their anxiety and improve their medical outcomes when it comes to going through care transitions,” Dr. Mackie says.  

The shift from pediatric to adult care is just one of three life transitions being studied by the researchers; the others are pregnancy and end-of-life care.  

Because the population of adults living with CHD is rapidly growing, the multi-part program will gather data — including age, sex, type of heart defect and life expectancy — to paint a detailed picture of the lifespan challenges faced by this group.  

Here’s how the team will approach each transition. 

• Transition to adulthood: The researchers will develop and test a 12-week virtual mentorship program aimed at people aged 16 to 25, to provide advice and emotional support as they move to adult cardiac care. A parallel peer support program for parents will also be tested. 
• Transition to parenthood: Pregnancy increases heart risks, especially for mothers-to-be with CHD, and the challenges facing new parents living with CHD can be higher than those faced by other new parents. So, the researchers will identify psychosocial needs of both women and men with CHD as they become parents. Then they’ll test a peer mentorship program aimed at supporting these new mothers and fathers. 
• Transition to end-of-life: While there’s no typical path for the end of a life with CHD, it is recognized that there is a need to improve end-of-life care for adults with CHD. So, the researchers want to help healthcare providers understand when and how to conduct a serious illness conversation. The goal is to support the person and their family by clarifying what the last stages of illness are likely to bring, as well as their values and wishes, and opening the opportunity for palliative care at the right time. 

The team grant is unique in several ways, Dr. Mackie says. “We have an interdisciplinary team, made up not only of pediatric and adult cardiologists, but also nurses, psychologists, statisticians, palliative care specialists and persons with lived experience.”

He stresses the importance of that lived experience perspective. “Throughout the research process, we will learn from and be guided by a lived experience council comprised of some younger adults with CHD, some older adults with CHD and some parents of children with CHD.”

Dr. Mackie is especially excited about the potential impact of peer mentoring, which is new to the field of CHD. “If it is shown to be successful, I would like to see virtual peer mentorship become available across Canada for adolescents and young adults with CHD, wherever they live.” 

For pregnancy, he hopes the research will support improved access to cardiology care for women with CHD. And he’d like to see better educational and psychosocial support for both women and men with CHD who are becoming parents. 

When it comes to end-of-life care, he hopes the research will have identified appropriate triggers for serious illness conversations. Even more important, he says, “We will have developed educational resources for cardiologists in terms of conducting these conversations successfully.” 

Throughout all this research, Dr. Mackie sees the key to success as keeping the focus on the experience of patients and families, to help more people survive and thrive with CHD.

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