Our Heart Center team helps teens learn to manage their health as they prepare to leave the comfortable nest of pediatric care.
Drs. Laura Richardson and Leslie Walker lead the effort to standardize how Seattle Children’s helpsteen patients learn to manage their own healthcare as they reach adulthood.
When Dr. Leslie Walker joined SeattleChildren’s seven years ago, she figuredher days of caring for adolescents atGeorgetown University Hospital wereover. She was wrong.
“I still get calls from people living inWashington, D.C., who are now in theirlate 20s. They track me down and say,‘I haven’t seen a doctor in seven oreight years and you know me and Itrust you, can you please just do thisone thing for me?’”
Walker’s experience underscoresa national problem. Each year millionsof young adults (ages 18 to 21) in theU.S. “graduate” from pediatric careand must move on to an adult provider,yet many aren’t ready to leave thetrusted relationships they’ve developedwith their pediatricians. What’s more,the maturity they need to takeresponsibility for their own healthcarecompetes with feelings of invincibility,rebelliousness and desire to be liketheir peers. It’s a mix that often resultsin years spent without a medical home.
For those with chronic illnesses, thisscenario can be downright dangerous.
“Teens with chronic conditionsflounder during this transition andtheir baseline health takes a divebecause of it,” says Dr. Laura Richardson,an adolescent medicine specialist at Seattle Children’s. “As pediatric providers,we’re trained to embrace the wholefamily and create nurturing environmentsthat support the delivery ofcare. Where we fall short is makingsure our teens are prepared to sit inthe driver’s seat of their own healthcarewhen they reach adulthood.”
Teens with chronic health issues oftenflounder as they move from pediatric toadult healthcare.
Walker and Richardson are leadingthe effort to standardize the way teenpatients at Seattle Children’s are transitionedto adult care – a best practice modeled on national standards developed bythe Center for Health Care TransitionImprovement. One example of Seattle Children’s innovative work involvesa unique partnership betweencardiologists at Seattle Children’s and theUniversity of Washington (UW).
Bridging two systems
Autumn Rusch (at work in the playroom at Seattle Children’s Bellevue Clinic and Surgery Center) received the eighthheart transplant at Seattle Children’s in 1996. Every year, she shares her tips for maintaining the health ofa transplanted heart with teens at an annual healthcare transition day.
Dr. Karen Stout made an importantrealization during her fellowshiptraining at UW to specialize in adultcardiology: kids with heart diseaseneed lifelong cardiology care tomanage the heart defects they wereborn with, yet most cardiologists aretrained to manage heart diseaseacquired in adulthood.
Stout completed extra training incongenital heart disease at Seattle Children’sto better understand the needs of young people born with heart issues.Her training in both worlds led herto develop one of the only programsin the nation where a small team ofproviders works at Seattle Children’s and UW's heart clinics to meet teens’ evolvingneeds as they mature into adults withcongenital heart issues.
Connecting the dots
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 transplantat the age of 12. At 13, she felt so goodshe decided she no longer needed totake the daily medications that kept herbody from rejecting her heart, so shethrew her pills out the window withouttelling a soul. Two weeks later, Latoshasuffered a severe heart rejection episodeand spent weeks in the hospital.
“Heart disease is an imposition forteens. It’s common for them to pretend like their condition doesn’t exist,”explains Dr. Yuk Law, medical directorof Seattle Children’s Heart Transplant Program. “Lecturing or scaring them about theconsequences of not taking their medsor getting their blood work isn’t aseffective as helping them figure outwhat their interests are and where theywant to go in life. That’s when theystart to see the benefit of takingresponsibility for their own health.”
That ongoing conversation helpedLatosha, now 17 and a senior in highschool, make peace with her heartcondition – and be more self-directedin her care. “Dr. Law is like a dad to me,sometimes stern and sometimes loving.He helped me understand more aboutwho I am, and that makes me want tokeep my health together. I want to bea family therapist or a social worker,and I know caring for my health willbe up to me when I go to college.”
Preparing to fly solo
When McCay Cash was 16, his pediatric cardiologist shifted his care to Dr. Karen Stout, a cardiologistat 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 towiden the valve that connects to hisaorta, the main artery that carriesoxygenated blood to his body. TwiceMcCay underwent open heart surgery to implant bigger valves as his bodygrew. His mom, Angela Cash, noticedover the years that McCay’s clinicalteam was having him take ever-increasingresponsibility for his care.
“When he was little, his nurses wouldgive him choices: ‘Do you want theblood pressure cuff on your right or leftarm? Which do you want to do first, your blood work or the breathingtreatment?’” remembers Cash.
By the time he was 13, the earlypractice making decisions paid off. “McCay really got that he had more todo than offer his body up for the examand let others make the hard choices.He even questioned the second openheart surgery and his team took hisconcerns very seriously.”
About five years ago, McCay’spediatric cardiologist at Seattle Children’sshifted his care to Stout so that shecould help McCay move toward adultcare by developing skills like orderingmedications, making appointments,asking questions about his conditionand acting on treatment recommendations.Stout’s goal is to instill teens withthe ability to advocate for themselvesand take charge of their own care inany medical setting.
“Today, we havemore adults withcongenital heartdisease thanchildren, becausekids with heartdisease now liveinto adulthood.”
“We spend a lot of time and resourcesmaking sure kids get the very best careat Seattle Children’s,” she says. “We want tomake sure patients like McCay extendthis health and well-being throughoutadulthood.”
Training the next generation
Dr. Jason Deen, a pediatric cardiology fellow,is doing an additional year of training in adultcardiology – with funding supplied by longtimeHeart Center supporter John Thompson – to helpteens make the critical transition to adult care.
Lynn Thompson was in her mid-20sin 2004 when she finally had to cutthe cord and leave Seattle Children’s.
“She loved Dr. Stanley Stamm, hercardiologist. He’d been her doctorsince the day she was born,” explainsher dad, John Thompson. “I thinkit took her two years to make anappointment with a cardiologistwho works with adults.”
Thompson, a long-time Heart Center supporter who started funding thecardiology fellowship program inpartnership with Seattle Children’s, wanted tomake sure some of that talent stayedin this region. In 2013, he decided tofund an additional year of training forcardiology fellow Dr. Jason Deen – training that gives Deen both pediatricand adult cardiology expertise.
“Dr. Deen’s commitment to hispatients is exceptional,” saysThompson. “I’m proud that my supportwill allow him to stay in Seattle andhelp hundreds of kids make that criticaltransition to adult care.”
Published in Connection magazine, April 2014