Mind the Gap

Innovative programs provide bridge between pediatric and adult care

The teen years can be strewn with anxiety as kids ride the rocky road into adulthood. But teen angst takes on a new meaning when a major health issue is thrown into the mix.

As kids grow into adolescents and young adults, their health needs change—especially if they have a disease like congenital heart disease or cancer. After years in the nurturing care of pediatric specialists, teens can be left in a lurch when it comes to transitioning to adult care.

Now medical specialists are collaborating to eliminate the boundaries between pediatric and adult care, developing specialized programs to help mind the gap.

Making the transition

For patients with congenital heart disease, it’s crucial to have ongoing medical care to prevent or minimize long-term issues. But making the switch from a pediatric cardiologist to a cardiologist who specializes in treating adults with congenital heart disease can be difficult.

Improved care has helped patients extend their survival horizon, says Patrick McCarthy, MD, executive director of the Bluhm Cardiovascular Institute at Northwestern Memorial Hospital. “Over the past several decades, many children with congenital heart disease were successfully treated and survived into adulthood,” he explains.

Twenty years ago, many children who underwent cardiovascular surgery didn’t survive. Today the survival rate for those who undergo the surgery at the Ann & Robert H. Lurie Children’s Hospital of Chicago is 98 percent. This significant increase has resulted in an ever-growing population of adolescent survivors who need appropriate transition and long-term treatment plans.

Congenital heart disease survivors require care throughout their lifetime. About two-thirds of infant neonatal survivors of cardiovascular surgery may have suffered brain injury as a result of low oxygen levels or decreased blood flow to the brain, according to Bradley S. Marino, MD, MPP, MSCE, pediatric cardiologist at Lurie Children’s Hospital.

This can lead to neurodevelopmental and psychosocial impairments, plus patients may be at risk for further heart problems, as well as lung, liver and kidney issues.

But the transition to adult care can be difficult, partly because the cases can be complicated and partly because not enough cardiologists are trained to treat adults with congenital heart disease, McCarthy says.

Follow-up presents another challenge, Marino says. “When children mature into young adults, their pediatric cardiologist generally refers them to an adult cardiologist with the hope that the patients will follow up on their own,” he says. “Unfortunately, at best 50 percent of patients transition to adult care, and some studies say it is as low as 25 percent.”

Creating a bridge

To eliminate gaps in treatment, Lurie Children’s Heart Center and Northwestern’s Bluhm Cardiovascular Institute recently established the Cardiovascular Bridge Program, where patients between the ages of 16 and 26 see both pediatric and adult-care cardiologists and advanced practice nurses to ensure an appropriate transition to adult care.

“Medical records don’t tell the whole story,” McCarthy says. “There is nothing that beats the clear hand-off of one physician explaining to another what has happened in a complex patient.”

There’s an education component, too. “We help our patients become their own best advocates and take on the responsibility of managing their healthcare,” Marino says. “We help parents cede some control and decision-making to their older adolescent or young adult.”

Geneva resident Kerry Ciesielski and her 18-year-old son Canan experienced those benefits from the Bridge Program. Canan was diagnosed with congenital heart disease when he was only one day old. A recent MRI showed some deterioration in Canan’s condition, which threatened his ability to play his favorite sports.

“We met with a cardiologist from Lurie and an adult cardiologist from Northwestern,” says Kerry Ciesielski. The specialists gave Canan restrictions on his physical activities, staving off surgery.

“They talked to him in a way that was clear, but not frightening, about how to manage his own care when he was in college. They explained that his life would be in jeopardy if he didn’t follow the restrictions, and they answered all his questions,” she says.

If Canan needs surgery in the future, Ciesielski takes comfort in the fact that the adult cardiologist will know her son well. “We will know the cardiologist, and he’ll be familiar with Canan as a whole person. They’ll know what’s important to him, instead of just looking at his heart valve in isolation.”

Help for cancer patients

The collaboration between pediatric and adult-care specialists is also an integral part of the Adolescent and Young Adult (AYA) Oncology Program at University of Chicago Medicine, which offers a team of pediatric and adult-care hematologists/oncologists to treat patients ages 15 to 30 diagnosed with leukemia or lymphoma.

Wendy Stock, MD, co-director of the adult leukemia program, says the AYA program began after a study showed that young adults with acute lymphoblastic leukemia had improved survival rates when they were treated with a high-intensity pediatric regimen rather than the standard low-intensity one used for adults.

The childhood survival rate for leukemia had been about 35 to 40 percent for the AYA age group, but now it’s approaching a high 70 percent with the more intensive treatment, Stock says.

In addition to treating patients’ cancer, the program also offers a comprehensive support system that includes a social worker, psychologist, physical therapist and massage therapist.

Young adults get help with challenges common to this age group including assistance with insurance coverage, help with minimizing missed days of school or work, and psychological support for anxiety, depression and feelings of isolation, says Jennifer McNeer, MD, a pediatric specialist in hematology and oncology at University of Chicago Medicine Comer Children’s Hospital and co-director of the AYA program.

Members of the AYA team also ensure that patients take their oral medication regularly at home. “Compliance with treatment has been shown to affect the outcome, so it’s important for us to come up with strategies to help them remember their home medications,” McNeer says. The program is not only beneficial for patients, but also for medical professionals who learn from each other’s expertise, she adds.

Research being conducted by the Bridge Program and the AYA Oncology Program will explore how bridging the boundary between pediatric and adult care can improve survival rates and quality of life for adolescent and young adult patients. And improved outcomes mean less angst for teens, their parents and their healthcare providers.