With chronic illness, moving from pediatric to adult care takes planning

When teenagers have a chronic illness, the transition from pediatric care to adult care will be easier for doctors, parents and patients with discussion and planning in advance, researchers say.

“Because pediatricians generally only see kids and internists generally only see adults, it can be hard for doctors to see the journey that families are on during their move from pediatric to adult care,” said Dr. Laura Hart of Nationwide Children’s Hospital in Columbus, Ohio, coauthor of a new article in the journal Pediatrics offering advice for smoothing these transitions.

“Without planning for the transition to adult care, adolescents and young adults with chronic health conditions can lose touch with their healthcare providers and often experience health problems when they do,” she told Reuters Health by email. “We think doing some planning for the transition can prevent these health problems from happening.” Hart and colleagues base their recommendations on 2018 transition guidelines from the American Academy of Pediatrics, American Academy of Family Physicians and American College of Physicians.

The guidelines advise starting a conversation about transition when patients are between ages 12 and 14. And by the time patients are aged 14-18, a transition plan should be taking shape, including a medical summary letter that will help the new doctor understand the patient’s history and needs. Patients should transfer to adult-centered care between ages 18 and 21 and evaluate the transition during their early to mid-20s.

Overall, the guidelines highlight the importance of continuing the discussion after patients move to adult care to ensure they’re comfortable with new doctors and established with new services.

To better illustrate the process and challenges of these transitions, Hart and co-author Dr. Garey Noritz of Ohio State University in Columbus interviewed Marie Crawford, a mother with two sons with intellectual and developmental disabilities who made the transition. Her son Peter, who has Down syndrome and a colostomy from surgery, spoke as well. Her son Patrick, who has autism and communicates nonverbally, didn’t join the interview.

Crawford worked with state- and county-level services for adults with disabilities to help her two sons transition to adult care. She has also helped other families through the process. Noritz worked with the family during the transition.

Crawford said she hadn’t anticipated a transition because her sons’ doctor said his patients with intellectual and developmental disabilities should stay with him through adulthood. When he decided to retire, however, she knew all of their care would change. Overall, it went well.

The “getting-to-know-you” period is the key part, Crawford said, and it’s individual for each patient. Peter doesn’t mind going to the doctor, for instance, and can speak for himself for the most part. However, Patrick doesn’t like the doctor and is nonverbal.

To help with this, she recommends an initial parent or guardian visit without the patient, followed by practice visits to the new doctor’s office for the patient, to see the waiting room, meet the staff and maybe even have their blood pressure taken without seeing the doctor.

For the first few appointments, Crawford recommends being scheduled as the first or last appointment of the day, and she asks the front desk to text her when the doctor is ready so she and her sons can wait in the car. Finally, she works hard to establish mutually realistic appointment times with the new doctor.

Noritz suggested that doctors ask specifics about what is likely to make the patient upset, what parts of the physical examination are tough to do, and if adjustments to the usual clinic routine might help.

“Think of the transition like a flight. You travel down a runway to go up in the air and then land and have another runway on the other side,” said Dr. Patience White, a Washington, D.C.-based rheumatologist and co-director of Got Transition, a national initiative to improve the transition from pediatric to adult healthcare. White was also lead author of the 2018 guidelines.

“People should ask their pediatricians what the plan is and what the clinic offers to create that plan,” she told Reuters Health by phone. “We should prepare for a good, warm handoff.”