Medical Professional Publications

Helping Adolescents Take the Reins on Their Cystic Fibrosis Care

(From the July 2015 Issue of PediatricsOnline)

For adolescents, part of the transition to adulthood is learning personal responsibility for their health care. For those with chronic health conditions such as cystic fibrosis, the transition from pediatric care to adult care can be an especially challenging time.

“We wanted to be able to offer our patients a well-defined pathway for their transition,” says Karen McCoy, MD, who is chief of the Section of Pulmonary Medicine at Nationwide Children’s Hospital and leader of the transition program initiative. “Until now, we’ve been providing transition support in a more haphazard way, and things may get missed.”

The quality initiative to standardize and improve the transition experience is supported by a grant to Nationwide Children’s Hospital and 19 other centers by the Cystic Fibrosis Foundation. The program at Nationwide Children’s, called One CF Buckeye Nation, is part of a larger 20-center collaborative, called One CFLLC2 (One Cystic Fibrosis Learning and Leadership Collaborative). These centers regularly meet to share their challenges and successes and to work on problem solving together.

To get started, Dr. McCoy and her team surveyed roughly 30 patients and their families who were in or near the transition age. She says that while it had been suggested that families and patients would want something high-tech and online, what they really want is face-to-face communication.

Armed with this survey information, Dr. McCoy and her team assembled a class of transition patients and got to work.

“We have an advantage over some of the other centers in the collaborative in that, for us, the adult clinic is just down the hall,” says Dr. McCoy, who is also the principal investigator on the CF Foundation grant. “At its most basic level, seeing the adult providers versus the pediatric providers is a matter of turning right or left down the hall.”  There is regular communication between pediatric and adult teams, making the medical transition pretty seamless.

Even so, the transition from pediatric to adult care can cause a lot of trepidation for patients and families, she says. Changing doctors, often moving on from the physician who has been caring for the patient his or her whole life, is intimidating. For that reason, meeting with the adult providers before the transition is complete is an important part of the program.  Likewise, at the first actual adult provider appointment the pediatric provider will join the visit to demonstrate the completion of hand-off information. 

For patients, becoming the decision makers for their own care can also be daunting. Among the topics covered in the transition program’s modules, the assignment of a medical power of attorney is one that makes a lot of patients, families and even providers a little squeamish.

“The term power of attorney is often associated with a DNR order (do not resuscitate) order, which it is not,” Dr. McCoy says. “It is simply a designation of someone empowered to make medical decisions if a patient is unable to do so.”

“We talk about why it is a matter of great importance to decide who will make health care decisions on your behalf if you are unable to communicate your wishes at any point. The health crisis might not be disease-related at all,” she explains. “If you are in a car accident and can’t communicate, you need someone who can express your wishes for you. Every 18-year-old should think about this and designate a health care power of attorney.”

Other issues covered in the program include insurance, medications, fertility, nutrition and respiratory therapy.

Once the current class has completed transition, the team plans to survey the class as well as those patients who have recently transitioned before the current curriculum for satisfaction, and to monitor clinical progress for the year following transition. 

“So far, the (current) transition class is embracing the process and the experience, and we want to see if they are keeping up with their medications, attending clinic regularly and making good lifestyle choices,” says Dr. McCoy, who is also professor of Pediatrics at The Ohio State University College of Medicine. “We can use those data to refine further the transition program and other education tools for patients with CF.”

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