Smoothing road for child-to-adult health care

CONCORD, N.H. — As a high school senior, Mallory Cyr was a classic overachiever. As a college freshman, she was overwhelmed.

Besides the usual adjustments — being away from home, more difficult coursework — Cyr struggled to manage a rare digestive disorder that requires daily intravenous infusions. Doctors had said she wouldn't live past age 2 but she's been proving them wrong since. She tried to barrel her way through college with the same determination but ended up hospitalized with severe pneumonia.

Now 25, the Maine native looks back to that rough first semester as the start of a transition from pediatric to adult medical care. She's thrilled to be part of a new national project to smooth the road for other young adults with disabilities or chronic health conditions.

New Hampshire's Center for Medical Home Improvement has been awarded $1.3 million by the federal government to create a National Health Care Transition Center for Youth with Special Health Care Needs. It will oversee physicians in Boston, Denver and Washington, D.C., who will test new methods to improve the hand-off between pediatric and adult primary care.

"Adolescents tend to drift into adult care without a lot of planning," said Dr. Carl Cooley, director of the New Hampshire center.

Though that's true of adolescents in general as well as those with health conditions, the latter group doesn't have the luxury of staying away for long. They often face obstacles, including pediatric providers who aren't sure of their role in the transition and primary care physicians who may have little experience treating conditions that once killed children before they reached adulthood.

"Kids are living longer than they used to with a lot more complicated medical conditions, but unfortunately, the medical system is not set up to accommodate them on the adult side," said Dr. Laura Pickler, a family physician in Colorado whose practice serves children and youth with special health care needs and is one of the project's participants.

Besides finding adult health care providers that are a good fit medically, youth with special needs and their families need to prepare mentally or emotionally for the shift away from the pediatric system, which tends to be a "fluffy, nice warm fuzzy place to be," Pickler said.

"When you don't show up, we call you. If you don't fill your prescriptions when you're supposed to, we have a nurse who knows and they call you and bug you about it," she said. "That's a definite part of transition planning, to help young adults be able to go to a doctor's appointment and do it safely without their parents hovering over them and then make good decisions in the world."

As part of the project, several pediatric offices in each test city will be paired with adult primary care offices.

Cyr will focus on helping youth become better advocates for themselves, in part by sharing her own experiences. After being referred to an adult gastrointestinal specialist by her pediatric specialist and finding a primary care physician on her own, her main challenge has been finding in-home nursing for her daily infusions so that she can become truly independent.

"Right now I'm still going back and forth to my parents' house. There just isn't anybody willing to do the hours or the commute," she said.

College was a turning point, she said, because it made her realize that she needed to be upfront with her professors and others about her health needs and not be afraid to ask for help.

"I jumped into it trying to do everything myself — balancing my school work and my medical care and just going about how I had always gone," she said. "All of sudden I was getting sick, and I wasn't starting my homework until 11 o'clock at night. I had no friends because I hadn't had time to do anything for me."

She took most of a semester off to recover from pneumonia and came back determined to take better care of herself. The rest of college was a success.

"It's actually respectable to be that person who says, 'I'm going to need support so I can do this right,'" she said.

Some youth, however, can't speak up for themselves, which makes the health care transition even trickier. Holly Forlenza, 21, is nonverbal, has a significant seizure disorder and functions cognitively like a toddler. She relies on a neurologist for most of her medical needs after a primary care physician rejected her, said her mother, Eileen Forlenza, director of the Colorado Medical Home Initiative and a parent adviser to the new project.

Forlenza said she tried to give the doctor a "transition workbook" she had put together with her daughter's photo and information so the doctor could get to know her.

"The physician said, 'I don't really want this. I have no place to file it,'" Forlenza recalled. "I said, 'I don't want you to file it. I want you to read it.'"

Despite that experience, she said she is hopeful that the project will lead to change.

"With health care reform and this conversation being so open in our country right now, people are at least talking about these kind of issues more," she said.

Dr. Marie Mann is a project director at the U.S. Department of Health and Human Services' Maternal and Child Health Bureau, which awarded the grant and is collaborating with the center. She estimated that as much as 13 percent of all U.S. children have some kind of chronic condition, and at least half a million a year are adolescents nearing adulthood. But she said the project could end up helping others beyond that population by emphasizing that all adolescents should learn how to take responsibility for their own health and become smart consumers of health care.