Treating childhood-onset disease when the patient is no longer a child

    Down syndrome, cystic fibrosis, muscular dystrophy — thanks to advances in medicine and science, many people affected by these conditions live longer today. One side effect of this positive development?

    It’s tough for them to find appropriate medical care.

    The transition care practice at Christiana Care Health System’s Wilmington Hospital is stepping in to care for people who have so-called “childhood disease” but are no longer children.

    Trey Howell, 28, is one of those patients. He has Down syndrome, and most recently came in to see his doctor, Jen LeComte, because he hurt his foot.

    • WHYY thanks our sponsors — become a WHYY sponsor

    Finding a doctor to take care of Trey’s basic medical needs and preventive care has not been easy says his mother, Kim Howell.

    “Most of them aren’t used to being around disabled adults,” explained Howell. “So they are not sure how to react to them, how to respond to them if they have question, so it’s been difficult finding medical doctors.”

    Howell, a Newark resident, says many young adults end up staying with their pediatricians, but it’s not ideal.

    “When they start being 25, 26 or 27, it’s awkward going to a pediatric office,” she said.

    A health-care captain

    Enter the transition care practice. LeComte, who heads the practice, says young adults such as Trey receive a lot of specialty care, but someone — and not a pediatrician– has to be in charge to connect the dots.

    “A lot of times, our patients don’t just have one problem, so they are seeing multiple specialists,” said LeComte. “They are getting multiple prescriptions from each of them, so they need somebody to be the captain.”

    The practice serves about 100 patients, but LeComte says the demand is growing.

    “For instance, with cystic fibrosis, in the 1970s patients only lived until they were about 7. Now they are aging, and it’s important to find a primary care provider,” she said.

    LeComte’s patients have very diverse and complex medical histories. Many have genetic disorders such as cystic fibrosis, or physical and developmental disabilities.

    “About a third of our patients … are wheelchair-dependent,” explained LeComte. “And about the same number … are nonverbal. That’s a big challenge to providers.”

    Directly addressing patients

    One of LeComte’s goals is to empower her patients, no matter what they condition, to take charge of their own health-care needs.

    “We speak directly to the patients and include the family and caregivers as needed, depending on what their level of independence is,” she said.

    During Trey Howell’s visit, LeComte asked him to sit next to her, and directed all of her questions to him.

    That’s a major change for them, said his mother. Trey’s last doctor, who was their family doctor, never spoke to Trey directly. “He wasn’t rude with him, but he would talk around him,” Howell recalled.

    Trey says he is happy with the care he receives here.

    “I love this place and Dr. LeComte, Dr. Jen, she is very nice,” he said.

    Before he left, the young man showed off a few dance moves to make his doctor smile – he is currently taking a salsa dancing class. Trey also works and audits college courses.

    Keeping well, keeping connected

    The transition care practice focuses on clients’ overall well-being and connections. The office has a social worker on staff who connects families to resources — to make sure the patients are engaged and able to participate in activities.

    “What would they like to do, if the opportunity was there, what kinds of programs would they be interested in?” said Christiana Care social worker Lauren Gillespie, describing the kinds of questions she asks.

    Gillespie says the transition into adulthood is a difficult one, and she makes sure families feel like they have a partner.

    “There’s a perception that adult world is a cold world where nobody cares,” said Gillespie. “When they come to us, they realize it’s still very warm, you are in a medical home, you’re not a name and number.”

    Jen LeComte says the practice’s other main goal is to train more physicians to serve this growing group of adult patients with childhood-onset conditions.

    “Part of our mission is to make sure that we train doctors to be comfortable with this population, to take care of them in the future, so that that’s not a barrier anymore,” she said.


    Watch a TV version of this story Friday at 5:30 p.m. on our Delaware news magazine FIRST on WHYY TV 12

    Want a digest of WHYY’s programs, events & stories? Sign up for our weekly newsletter.

    Together we can reach 100% of WHYY’s fiscal year goal