Preparing Teens to Manage Their Healthcare as Adults

Our Heart Center team helps teens learn to manage their health as they prepare to leave the comfortable nest of pediatric care.

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Drs. Laura Richardson and Leslie Walker lead the effort to standardize how Seattle Children’s helps teen patients learn to manage their own healthcare as they reach adulthood.

When Dr. Leslie Walker joined Seattle Children’s seven years ago, she figured her days of caring for adolescents at Georgetown University Hospital were over. She was wrong.

“I still get calls from people living in Washington, D.C., who are now in their late 20s. They track me down and say, ‘I haven’t seen a doctor in seven or eight years and you know me and I trust you, can you please just do this one thing for me?’”

Walker’s experience underscores a national problem. Each year millions of young adults (ages 18 to 21) in the U.S. “graduate” from pediatric care and must move on to an adult provider, yet many aren’t ready to leave the trusted relationships they’ve developed with their pediatricians. What’s more, the maturity they need to take responsibility for their own healthcare competes with feelings of invincibility, rebelliousness and desire to be like their peers. It’s a mix that often results in years spent without a medical home.

For those with chronic illnesses, this scenario can be downright dangerous.

“Teens with chronic conditions flounder during this transition and their baseline health takes a dive because of it,” says Dr. Laura Richardson, an adolescent medicine specialist at Seattle Children’s. “As pediatric providers, we’re trained to embrace the whole family and create nurturing environments that support the delivery of care. Where we fall short is making sure our teens are prepared to sit in the driver’s seat of their own healthcare when they reach adulthood.”

Teens with chronic health issues often flounder as they move from pediatric to adult healthcare.

Walker and Richardson are leading the effort to standardize the way teen patients at Seattle Children’s are transitioned to adult care – a best practice modeled on national standards developed by the Center for Health Care Transition Improvement. One example of Seattle Children’s innovative work involves a unique partnership between cardiologists at Seattle Children’s and the University of Washington (UW).

Bridging two systems

Autumn Rusch

Autumn Rusch (at work in the playroom at Seattle Children’s Bellevue Clinic and Surgery Center) received the eighth heart transplant at Seattle Children’s in 1996. Every year, she shares her tips for maintaining the health of a transplanted heart with teens at an annual healthcare transition day.

Dr. Karen Stout made an important realization during her fellowship training at UW to specialize in adult cardiology: kids with heart disease need lifelong cardiology care to manage the heart defects they were born with, yet most cardiologists are trained to manage heart disease acquired in adulthood.

Stout completed extra training in congenital heart disease at Seattle Children’s to better understand the needs of young people born with heart issues. Her training in both worlds led her to develop one of the only programs in the nation where a small team of providers works at Seattle Children’s and UW's heart clinics to meet teens’ evolving needs as they mature into adults with congenital heart issues.

Connecting the dots

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Latosha Evans, 17, gets some encouraging words from her cardiologist, Dr. Yuk Law, before a stent procedure. A Seattle Children’s patient since she was one day old, Latosha says Law helped her make peace with her heart condition and be more self-directed in her healthcare.

Latosha Evans had a heart transplant at the age of 12. At 13, she felt so good she decided she no longer needed to take the daily medications that kept her body from rejecting her heart, so she threw her pills out the window without telling a soul. Two weeks later, Latosha suffered a severe heart rejection episode and spent weeks in the hospital.

“Heart disease is an imposition for teens. It’s common for them to pretend like their condition doesn’t exist,”explains Dr. Yuk Law, medical director of Seattle Children’s Heart Transplant Program. “Lecturing or scaring them about the consequences of not taking their meds or getting their blood work isn’t as effective as helping them figure out what their interests are and where they want to go in life. That’s when they start to see the benefit of taking responsibility for their own health.”

That ongoing conversation helped Latosha, now 17 and a senior in high school, make peace with her heart condition – and be more self-directed in her care. “Dr. Law is like a dad to me,sometimes stern and sometimes loving. He helped me understand more about who I am, and that makes me want to keep my health together. I want to be a family therapist or a social worker, and I know caring for my health will be up to me when I go to college.”

Preparing to fly solo

Karen Stout and McCay Cash

When McCay Cash was 16, his pediatric cardiologist shifted his care to Dr. Karen Stout, a cardiologist at the University of Washington who specializes in helping bridge teen patients at Seattle Children’s to adult care.

When McCay Cash was a year old, he had angioplasty – a procedure to widen the valve that connects to his aorta, the main artery that carries oxygenated blood to his body. Twice McCay underwent open heart surgery to implant bigger valves as his body grew. His mom, Angela Cash, noticed over the years that McCay’s clinical team was having him take ever-increasing responsibility for his care.

“When he was little, his nurses would give him choices: ‘Do you want the blood pressure cuff on your right or left arm? Which do you want to do first, your blood work or the breathing treatment?’” remembers Cash.

By the time he was 13, the early practice making decisions paid off. “McCay really got that he had more to do than offer his body up for the exam and let others make the hard choices. He even questioned the second open heart surgery and his team took his concerns very seriously.”

About five years ago, McCay’s pediatric cardiologist at Seattle Children’s shifted his care to Stout so that she could help McCay move toward adult care by developing skills like ordering medications, making appointments, asking questions about his condition and acting on treatment recommendations. Stout’s goal is to instill teens with the ability to advocate for themselves and take charge of their own care in any medical setting.

“Today, we have more adults with congenital heart  disease than children, because kids with heart disease now live into adulthood.”

Dr. Karen Stout

“We spend a lot of time and resources making sure kids get the very best care at Seattle Children’s,” she says. “We want to make sure patients like McCay extend this health and well-being throughout adulthood.”

Training the next generation

Jason Deen

Dr. Jason Deen, a pediatric cardiology fellow, is doing an additional year of training in adult cardiology – with funding supplied by longtime Heart Center supporter John Thompson – to help teens make the critical transition to adult care.

Lynn Thompson was in her mid-20s in 2004 when she finally had to cut the cord and leave Seattle Children’s.

“She loved Dr. Stanley Stamm, her cardiologist. He’d been her doctor since the day she was born,” explains her dad, John Thompson. “I think it took her two years to make an appointment with a cardiologist who works with adults.”

Thompson, a long-time Heart Center supporter who started funding the cardiology fellowship program in partnership with Seattle Children’s, wanted to make sure some of that talent stayed in this region. In 2013, he decided to fund an additional year of training for cardiology fellow Dr. Jason Deen – training that gives Deen both pediatric and adult cardiology expertise.

“Dr. Deen’s commitment to his patients is exceptional,” says Thompson. “I’m proud that my support will allow him to stay in Seattle and help hundreds of kids make that critical transition to adult care.”

Published in Connection magazine, April 2014