In 2013, Children’s Healthcare of Atlanta and Emory Healthcare partnered to create a comprehensive program for children and adults with congenital heart disease (CHD). The Congenital Heart Center of Georgia is the first comprehensive program in the South and the one of the largest in the country. It will offer quality care to children and adults and aims to make it easier for adolescents to transition to an adult practice for management of their disease. Recent research shows that 40 percent of patients ages 13-21 with congenital heart defects discontinue care for their heart condition.
The need to switch patients from pediatric to adult heart specialists is a good problem to have, according to Robert Campbell, MD, chief of cardiac services and director of cardiology at Children’s Sibley Heart Center.
“When I started my practice in 1981, the conservative estimate for surgical mortality was 25-30 percent of patients. In many cases there was no surgical option. We knew that babies born with certain heart defects were going to die,” said Campbell. “With new research, surgical techniques, devices and medicines many of our patients now survive. We have a whole new population of adult patients. Their heart defects have been repaired, but they are not cured. They will need lifelong management of their disease.”
The Sibley Heart Center performed 880 cardiac surgeries in 2013. Most congenital heart defects are diagnosed in infants or children. Only in recent years have doctors realized the need to teach teenage patients what they need to do to keep their heart healthy. An annual check-up is considered best practice for many patients. Too many fall through the cracks as they get older, however, for a variety of reasons, said Campbell.
“First of all, 16 year-olds think they are bullet proof. If they aren’t experiencing symptoms, they don’t want to be different from their friends. They don’t want to go to doctor appointments,” he said. “Secondly, moms tend to view early surgery as life-saving, and want to believe that nothing is wrong with their children now.”
Campbell realized that his own attitude played a part in patients not continuing care. “If they were stable, then we’d say they were doing great and we could see them in three years. We were sending the message that they were fine and that contributed to the loss of follow-up care. We’ve had to learn to do things differently,” he said. “We need to tell them what needs to happen and why early and often, and from different people, so that the message is heard. At 13, they don’t understand; at 16 they don’t care, but at 19 they begin to get that it’s about them and they should listen.”
Not having the physical capacity or credentials to treat patients after 21, the Sibley Heart Center has begun preparing patients to find adult specialists. “We had a world-class cardiac practice across the street at Emory, so it just made sense to partner with them to form this unique program,” said Campbell.
Educating and empowering young patients to manage their own health
“We began focusing on tools to help the adolescent patient transition to adult care about six years ago. We started teaching kids about their own conditions and empowering them to self-manage their care starting at age 13. When you start early, repeat it every year and encourage them to ask questions, we hope the message finally sinks in,” said Kathy Murphy, MSN, RN, PNP, clinical nurse specialist with CHOA’s Sibley Heart Center.
A nurse since 1983, Murphy’s multi-faceted role includes staff and patient/family education with the purpose of improving outcomes. “We see our patients and their families from a very early age. They come back for routine check-ups, problems and additional surgeries or procedures,” she said. Many patients attend Camp Braveheart and special CHOA activities. “We’re a big part of their lives, so sending one of our patients off is almost like a mother sending her child to college. It’s hard to let them go, but we’re also happy that they’re adults, and we know that they’ll be best served in an adult facility.”
Research shows that there are about 1 million pediatric CHD patients and 1.25 million adult CHD patients in the U.S., and medical advances allow them to live longer, fuller lives. “We just want them to do well. You can’t work in this field and see the long-term effects of the disease and operations and not be constantly looking for ways to improve the quality of care,” said Murphy.
CHOA has developed multiple tools to help patients overcome the natural barriers to finding adult care. Teens often have lack of medical knowledge and many other things going on in their lives, such as college, jobs, relationships and risky behaviors.
“In 2009, the Sibley Heart Center cardiologists put together an adolescent visit check-off sheet that goes into every chart. It encourages physicians to talk with their patients about the importance of completing high school, going to college, sports, insurability, pregnancy, unhealthy habits and the need for lifelong follow-up care,” she said.
About two years ago, Murphy worked with Georgia Tech Research Institute researchers and Living Stories to develop a computer-based training tool, called “Taking Charge of Your Heart.” “It encourages teens aged 13 to 17 to learn about their own conditions with 9 sections on topics like the heart’s anatomy, self-care concepts, genetics, pregnancy, healthy choices, insurance, advance directives and more,” said Murphy. “Each section is written by a member of the cardiac team and comes with a post-test.
Using this non-threatening, computer-based tool helps teens begin health self- management skills. “I consider this tool one of my greatest accomplishments. You don’t have to be a CHOA patient to use it, and we get calls about it from health care providers all over the country,” said Murphy. See http://www.choa.org/childrens-hospital-services/cardiac/resources/just-for-teens.
The Sibley Heart Center also sponsors an annual Adolescent Transition Conference each fall for patients and their families. “It really takes a team to help patients ages 18-21 make a healthy transition,” she said. “Providing education for our patients’ futures is one way we’re improving our practice.”
A success story
Allie Griner, who was Dr. Campbell’s patient #10, is great example. The 25-year-old works as a health insurance navigator for the UGA Cooperative Extension Service and is earning her PHD in public administration and policy.
Diagnosed with a congenital heart defect a few hours after birth, she was airlifted to CHOA from Macon. “I’ve had 8 surgeries over the years and Dr. Campbell was the only doctor I knew until I switched to the Emory Adult Congenital Heart Center at 21,” said Griner. Heart problems didn’t limit her activities. She was on the Flag Team for the marching band and belonged to the Future Farmers of America, the Academic Bowl and Math Team in high school. She was also one of the earliest campers at Camp Braveheart.
“I saw Dr. Campbell every six months growing up. I trusted him. I knew that he knew what was normal for my heart. What he said was gold in my family,” she said. “So I went kicking and screaming into adult practice.” What helped was compiling a long list of questions for her last appointment with Dr. Campbell. “I asked about tattoos and piercings, but I always wanted to know what he thought I should be doing to keep my heart healthy,” she said. “Then I had a really good first appointment at Emory and they explained how their cardiologists work as a team. I like that different experts are looking at my history and case before making decisions,” she said.
Last fall, Griner attributed her tiredness to doctoral exams and her October wedding. Her doctors attributed it to a leaky valve. She underwent a transcatheter aortic valve replacement surgery in December. “It was a relatively new procedure and less invasive. I was back to work in two weeks,” said Griner.
When Griner talks to younger CHD patients as a counselor at Camp Braveheart and a speaker at Sibley Heart Center activities, she tells them that having a heart condition doesn’t have to define everything about them. “You have to set your own limits and go as far as you can go. And you have to take charge of your own health,” she said. “Asking your doctor questions is a great way to start.”
