Clinic eases transition from pediatric to adult care for congenital heart patients

Between eight and 10 of every 1,000 children in Alberta are born with a congenital heart abnormality. Management of these heart conditions – which impact the structure and function of the heart – has vastly improved over the last few decades. 

This has resulted in a significant increase in the number of children surviving to adulthood (from less than 50 per cent in the early 1960s to between 90-95 per cent today). 

“Because our surgeons and interventional cardiologists do such a great job repairing the hearts of children born with abnormalities, and because we are better able to care for these patients, from a medical perspective, the adult congenital heart population is cardiology’s fastest growing patient group,” says Dr. Nanette Alvarez, a congenital heart specialist. 

“The number of patients grows by about five per cent annually.” 

In the early 1990s, Alvarez, who trained in Toronto at the first adult congenital heart clinic in Canada, recognized the growing need to support congenital heart patients into adulthood.  

In 1991, Alvarez led development of the Southern Alberta Adult Congenital Clinic at the Peter Lougheed Centre. Today the clinic, which is one of the largest in Canada, follows about 3,000 patients with a range of moderate to severe structural cardiovascular problems, with conditions like Tetralogy of Fallot and Transposition of the Great Arteries. 

Early on, the group realized the importance of easing the transition from pediatric to adult care and began collaborating with pediatric cardiologists, hosting a clinic together before a child formally moved to adult care. 

Formalized program

In 2017, the Adult Congenital Heart Clinic team developed a more formal program to equip young adults with the skills needed to take responsibility for their own care. Led by then clinic director, Alvarez, the program provided young patients with several unique services including family planning and career counselling, in addition to assessment, treatment and follow-up. 

“When you are a child, everything is done for you,” says Alvarez. “So when you are suddenly responsible for your own care, it can be quite difficult. “Our goal is to provide the support our patients need to be successful.”

In 2021, Dr. Michelle Keir, a clinician-researcher specializing in adult congenital care, took over as medical lead at the Southern Alberta Adult Congenital Heart Clinic. Since then, the pediatric to adult transition program has continued to evolve into a multidisciplinary approach with long-term support for patients throughout their transition years. 

“Research has shown that transition to adult care isn’t a one-day event. It’s something that occurs over years,” says Keir. “But it’s critical because follow up with an adult congenital expert prolongs life for these patients and helps them live their lives to the fullest.” 

Today, the transition program begins at the pediatric stage. In their early teens, patients are encouraged to begin their transition by speaking to their doctor rather than just allowing their parents to do the talking. They are also encouraged to understand exactly what is wrong with their heart and explain their symptoms. 

According to Keir, starting early prepares older teens to better manage their own care.  

But in Calgary, patients don’t lose their support at age 18. The multidisciplinary specialists at the clinic support their patients at all life stages including family planning, pregnancy and childbirth, through transplants and even palliative care. 

This support is offered by numerous specialists, ranging from respirologists and liver specialists to social workers, mental health specialists and nurse clinicians.  

This collaborative approach improves patient outcomes, according to Keir. 

“The clinic has grown a great deal and the focus is on quality of life for our patients,” says Keir. “Our job is to make sure they are not just living, but thriving, and that has been really rewarding.” 

Keir expects the clinic, and the transition program, to grow as innovation continues to allow more children with congenital heart defects to live to adulthood.

“We are seeing the middle of the iceberg, and it’s going to continue to grow,” she says. “We hope to continue to educate our colleagues about these conditions, because there are lots of patients and there are going to be more. 

“In the future, I expect to see more patients live a normal life span and to enjoy a fulfilling life. It’s exciting.”