Edmonton Study Educates Teen Heart Patients
Written by Trevor Robb
Ashley Gawlik was just 13 years old when she first underwent heart surgery.
It was the first of two required surgeries Gawlik, now 19, underwent, including an aortic valve repair. Back then, if you asked Gawlik the specifics regarding her condition, she honestly couldn’t tell you.
“When people would ask me what kind of heart condition I had, I would just say that I have heart problems,” said Gawlik, one of 58 teenagers, ages 15 to 17, who took part in a recent clinical research study conducted at the Stollery Children’s hospital.
The study was aimed at educating teens on the specifics of heart anatomy in preparation for their eventual transition from pediatric to adult health care. It was an experience that benefited Gawlik first-hand.
“Now I can actually say that I have bicuspid aortic stenosis and I can explain a little bit more about my condition. You need to know about your body, so when the doctors are talking to you it’s nice to know and understand what they’re talking about versus just going through one ear and out the other,” said Gawlik,
The Congenital Heart Adolescents Participating in Transition Evaluation Research (CHAPTER) study saw half the participants receive one-on-one nurse-led information sessions, while the other half did not. Six months later, the groups were tested on their knowledge of transition readiness and cardiac knowledge, and the results showed that the ‘educated’ group scored significantly higher.
Pediatric cardiologist Dr. Andrew Mackie was the principal investigator involved with CHAPTER. Part of the study’s intention was to help instil confidence in adolescents with chronic heart conditions, helping ensure they routinely visit hospitals later on in life.
“Some of these adolescents may think they’re cured — which they are not — and they are at risk of later cardiac complications later in life, which is why they need lifelong follow up,” said Mackie.
“Half of young adults born with heart defects never show up at adult cardiology clinics, and our job is to help turn that around and have them graduate from pediatric programs armed with knowledge of their specific heart condition, but also armed with the self-management skills that are necessary to continue to be a healthy adult.”
The whole experience has inspired Gawlik, who is now entering her third year of studies in the MacEwan University nursing program, with aspirations to pursue a career in pediatrics. She owes it all to her experiences at the Stollery.
“The surgery I had played a really big interest because the nurse that I had was fantastic. I was a kid when I had my surgery and I just loved that nurse and I want to do the same for someone else.”
The CHAPTER pilot program was funded from the Women & Children’s Health Research Institute through funds provided by the Stollery Children’s Hospital Foundation. The success of the program has paved the way for an additional multi-year, $300,000 study involving 120 adolescents, aged 13 to 14.
The CHAPTER study will be published in the peer-reviewed journal, Heart, and can be found online at heart.bmj.com.
Published June 26, 2014, Edmonton Sun