Katie Kelly, 20, has been coming to Children’s since the day she was born and diagnosed with cystic fibrosis. Kelly, like many lifelong patients, says she considers the hospital her second home. She’s always greeted by name and often a hug, and is deeply attached to her doctors and nurses, who feel like family.
But eventually, as they grow older, teenaged patients like Kelly must begin the process of “graduating” from the warm, kid-focused atmosphere of Children’s to the sometimes daunting world of adult medicine. Imagine having to say goodbye to the only caregivers you’ve ever known to move to an adult hospital, where everything is unfamiliar and you’re expected to manage your own appointments, medications and health insurance.
“Understandably, for many teens who have grown up at Children’s, the prospect of transitioning to an adult hospital can be overwhelming and emotional,” says Parag Shah, MD, newly-appointed medical director of the chronic illness transition team.
Dr. Shah is working with social worker, Rebecca Boudos, to establish hospital-wide programs and guidelines to help improve transitional care, which they emphasize is a process, not a singular event, and one that includes preparing patients, finding adult providers and effectively transferring care.
“Ideally the process should start years before the actual transfer of care because there are so many aspects to it,” Boudos says. For example, finding adult providers who treat certain congenital conditions or childhood diseases isn’t always easy. Another major barrier to care has been the loss of health insurance coverage once patients reach a certain age.
Perhaps most importantly, patients must strive to become as knowledgeable about their medical conditions, treatments and prescriptions as their parents are, while parents must practice letting go, trusting their children to manage their own health and the myriad of responsibilities it entails.
As more children with serious medical conditions, like cystic fibrosis, are surviving into adulthood, the need for comprehensive and compassionate transitional care is greater than ever. Without it, these young people are at a much higher risk of major complications, increased hospitalizations, even death, if medication adherence and follow-up visits wane.
At Children’s, there is no set age for transitioning kids to adult care; it varies by medical condition and hospital division, some of which have joint programs with Northwestern Memorial Hospital. Because of this partnership, cystic fibrosis patients like Kelly have the opportunity to meet with their new adult care team at Children’s until their care is officially transferred.
Kelly recently met with her friends on the hospital’s Kids' Advisory Board to share her experience and to encourage them to initiate transition discussions with their caregivers and parents as early as possible. “I also wanted to dispel some of the myths about adult hospitals to let them know there are some upsides — like better TVs!” she laughs.
“While we can’t change the inherent cultural differences between children’s hospitals and adult hospitals, we can better prepare our patients for this major change in their lives, and assist their parents and caregivers through the process as well,” says Boudos.
Dr. Shah adds, “Ultimately our goal is to empower young people to fully manage their own health so that they can thrive as adults and pursue their goals and dreams.”
The cystic fibrosis program is generously supported by Liv for a Cure, Stephanie and John Harris and the Harris Foundation, and Maggie’s Miracle Makers.
This article first appeared in the spring 2010 issue of Heroes magazine.