Research Gives Lifelong Skills to Teens with Heart Disease

Sessions steer youth towards better knowledge, self-management skills

EDMONTON — Youth with heart disease are gaining the knowledge and self-management skills to transition to a healthier lifetime of followup care as adults thanks to clinical research at the Stollery Children’s Hospital.

The findings of the Congenital Heart Adolescents Participating in Transition Evaluation Research (CHAPTER) study show that educational sessions do make a positive difference for youth with congenital or acquired heart disease.

Many children born with a heart condition grow up mistakenly thinking they’re cured, unaware of problems that can develop in later years, while others feel intimidated by the adult health care system and skip appointments.

“These adolescents have complex health needs and require lifelong cardiology followup,” says principal investigator and pediatric cardiologist Dr. Andrew Mackie, also an Associate Professor in the Faculty of Medicine & Dentistry at the University of Alberta. “By becoming more knowledgeable about their cardiac condition, they’re more likely to continue with followup care, which will improve the detection of new heart problems that they’re at risk of developing.”

With his team of Alberta Health Services (AHS) and university associates, Dr. Mackie recruited 58 teens, ages 15 to 17, to participate in one-on-one, nurse-led information sessions designed to ease their transition from pediatric to adult health care.

The sessions taught the teens their heart anatomy, reviewed their previous operations and procedures, and showed them how to obtain adult cardiology care.

Half of the teens received a teaching session, while half did not; both groups were tested six months later on transition readiness and cardiac knowledge. The ‘educated’ group scored significantly higher on both counts.

With 10 to 15 per cent of all Canadian kids living with chronic conditions ranging from asthma to congenital heart disease, instilling a sense of confidence is vital, says Dr. Mackie. “We help them develop a willingness to ask questions, advocate for themselves, or do simple tasks like renew a prescription or make a doctor’s appointment on their own.”

Study participant Ashley Gawlik underwent two heart surgeries at 13, including an aortic valve repair.

“When people ask me what my condition is, I can explain it easier now. (The researchers) also gave me a ‘heart passport’ that I carry in my wallet if I need to inform people about my condition in an emergency,” says the 19-year-old Grant MacEwan University nursing student.

“I’m confident now. I feel very comfortable when I need to go by myself to the doctor or the hospital. Part of the reason I want to be a pediatric nurse is because of the great care I received as a heart patient.”

Keeping in touch is important, as well. After the sessions, Dr. Mackie’s team texted the teens to invite them to ask more questions any time — and many already have.

“Most of their followup questions have to do with adolescent risk-taking behaviours — sex, drugs and rock and roll,” says Mackie. “They know they have a resource that they can go to, to ask questions that they may not want to ask in the cardiology clinic with their parents sitting right next to them.”

The CHAPTER pilot study received funding from the Women & Children’s Health Research Institute through funds provided by the Stollery Children’s Hospital Foundation. The study’s findings will be published in Heart, an international peer-reviewed journal that keeps cardiologists up to date with advances in the diagnosis and treatment of cardiovascular disease.

The study paved the way for a larger, multi-year study of 120 adolescents with cardiac disease, which received $300,000 in funding from the University Hospital Foundation. The results of this ongoing study will allow Dr. Mackie and his CHAPTER team to further improve the care provided to congenital cardiac patients transitioning from child to adult cardiac care.

An abstract of the CHAPTER study findings can be viewed on the Heart website at: