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Transitioning Pediatric Patients with Chronic Conditions


Last September, Seattle Children’s Hospital hosted a “graduation day” party for one of its longtime patients, Robyn Nichols.

Robyn first entered the hospital as a 21-month-old after a major car accident that left her a quadriplegic and ventilator-dependent. She was in a coma for nine weeks and spent many days and nights in the children’s hospital. Now 20 years old, she’s ready to be cared for in an adult hospital when the need arises.

Her mother, Amy Thompson, wrote a letter thanking the staff for their dedication. And while she’s sad to say goodbye, she’s grateful for their efforts in overseeing the shift in Robyn’s care to adult specialists.

“If I were to let a doctor know one thing about transitioning a pediatric [patient] to adult care, [it] is for them to recognize how scary it is for the patient as well as the family,” Thompson says. “After being in the adult world with a special-needs adult daughter for a couple of months, I want to go back [to the children’s hospital]. The unknown, when you are talking life and death, can be terrorizing.”

As pediatric patients with chronic medical conditions enter adolescence and the young adult years, proper transitions can make a significant difference in their inpatient and outpatient care. And with thoughtful collaboration, hospitalists can deliver solutions that lead to good outcomes.

“A safe transition provides a great deal of relief and comfort to the families of these patients,” says Moises Auron, MD, FAAP, FACP, assistant professor of medicine and pediatrics at The Cleveland Clinic.

Delayed Dangers

Anticipating a maturing adolescent’s care needs is paramount. Chronic diseases diagnosed in childhood often lead to complications in the teen years and early adulthood. Over time, more complex treatments might be necessary. For instance, Dr. Auron says, a patient living with diabetes since age 5 could require a kidney transplant at age 25.

Childhood cancer survivors also tend to encounter major health challenges as adults, according to an Oct. 13, 2011, report in the New England Journal of Medicine. Acute lymphoblastic leukemia (ALL) is the most common pediatric cancer, with a cure rate surpassing 70%. However, adult survivors of childhood leukemia have heightened risks of secondary cancers, cardiovascular disease, and other chronic illnesses.1

Assembling transitions-of-care teams is one way that hospitals can help coordinate services for such patients. As these patients mature and “quit seeing their pediatrician, they don’t usually see anybody,” says W. Benjamin Rothwell, MD, associate director of the “med-peds” residency at Tulane University School of Medicine in New Orleans. “At that point, they kind of fall off the map, so to speak, until they present to the hospital acutely ill.”

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Chronic diseases diagnosed in childhood, such as cerebral palsy and sickle-cell anemia, often lead to complications in the teen years and early adulthood.

New Orleans has a large population of pediatric patients with sickle-cell anemia, a genetic disease that is more prevalent in blacks. Dr. Rothwell says he and his colleagues strive to transition these patients between the ages of 16 and 26. “The goal,” he says, “is to try to catch people in that 10-year span.”

Other conditions that add to the complexity of care for hospitalists include cerebral palsy, chromosomal abnormalities, congenital heart disease, and pregnancy in teenagers with chronic illnesses. Adult hospitalists might not be fully prepared to deal with developmentally disabled patients.

In such cases, “the family member or caregiver is a trusted ally in knowing what’s going on,” says Susan Hunt, MD, a hospitalist at Seattle Children’s Hospital and University of Washington Medical Center. “It may not be typical for adult providers to expect that kind of communication.” When put into this situation, hospitalists can enlist the caregiver’s input—for instance, asking, “How does your child show pain?”

When patients rely on medical devices, such as a gastric feeding tube, tracheotomy, or wheelchair, it helps to know where the family or previous facility obtained the specific equipment in case a replacement becomes necessary. Staying on top of the patient’s insurance coverage also is vital in a transition, Dr. Hunt says.

Communication should flow easily between providers in inpatient and outpatient settings, as adolescents with chronic conditions are “aging out of the pediatric system,” says Allen Friedland, MD, program director of the combined med-peds residency at Christiana Care Health System in Newark, Del.

Soon they are “thrust into the adult world, which has an entirely different paradigm,” Dr. Friedland says. Among the challenges is linking a hospital’s electronic health records to interface with the information given to the outpatient physicians overseeing a patient’s care.

Christiana Care Health System has collaborated with Nemours/Alfred I. duPont Hospital for Children in nearby Wilmington, Del., to transition patients with complex medical conditions into adult care. Nemours is providing comprehensive summaries, which indicate the types of subspecialty care that a patient could require in the future. “We sort of take some of the mystery out,” Dr. Friedland says. “We really anticipate the issues.”

The worst mistake you can make is to put off planning for the transition. When families are in crisis, they return to what they know, so they are likely to show up in your pediatric emergency room even though their child is now 19 or 20 years old.

—Emily Chapman, MD, pediatric hospitalist, Children’s Hospitals & Clinics of Minnesota, Minneapolis

Meanwhile, Christiana Care started an outpatient primary-care practice staffed by two physicians, a social worker, and a psychologist liaison. They coordinate with a physician and social worker at Nemours. Secure email also helps facilitate discussions about transitions of care between the pediatric and adult settings.

The teams have access to the transition-care practice providers for round-the-clock consultations, and Dr. Friedland assists in admitting patients to the most appropriate level of hospitalized care. “When a person goes to the ED,” he explains, “there’s already a set of expectations and orders.”

The Choice Is Yours

When staying in the hospital, some patients feel more comfortable on a pediatric floor, others in an adult environment. That’s why Keely Dwyer-Matzky, MD, and Amy Blatt, MD, both Med-Peds hospitalists, created an educational video for adolescent patients at the University of Rochester Medical Center in New York.

“There’s a lot of fear about transitioning, not knowing what it’s going to be like, what the expectations are, or the feeling of the floor itself,” Dr. Dwyer-Matzky says. The video informs viewers about the importance of keeping medical summaries of their problems and speaking up for themselves at visits to their doctors’ offices. It also mentions that the Rochester facility gives adolescents the option to tour an adult floor.

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Increasing Survival to Adulthood

“There are a lot of variables,” says Shelley W. Collins, MD, chief of the pediatric hospitalist division at the University of Florida at Gainesville. “If their cognitive level allows them to be participants in their own care, then I think we have obligation to ask them what their preference is.”

The state law that governs where an HM group practices also factors into the equation. In an emergency, a court order could be obtained if a procedure is deemed necessary and a legal guardian has not been established or the patient will not consent, Dr. Collins says of Florida law. “But we prefer to have a patient agree to it. In fact, we like and require the assent of a teenage patient, who can give it in addition to the consent of the parents.”

Dr. Collins and her colleague Arwa Saidi, MD, a pediatric cardiologist, propose “a transition checklist” for hospitalists to review and update every time a pediatric or adolescent patient with a chronic condition arrives at the hospital. This aggregate of information becomes part of the medical record for hospitalists to consult in the future.

Adolescents can present with adult-related problems such as heart disease or stroke. These are the sorts of issues that pediatric hospitalist may not be as comfortable handling. Meanwhile, adult hospitalists encounter child-related issues that don’t normally enter their territory.

For instance, with a patient admitted to the hospital for an asthma flare or diabetic ketoacidosis, adult hospitalists might be unaware of school rules pertaining to inhalers and insulin injections, says Weijen Chang, MD, FAAP, FACP, a hospitalist experienced in treating both adult and pediatric patients at the University of California at San Diego (UCSD).

“They’re not used to interacting with school systems in regards to someone’s health care,” says Dr. Chang, a Team Hospitalist member. “The best solution, as always, is education.”

Recognize how scary it is for the patient as well as the family. After being in the adult world with a special-needs adult daughter for a couple of months, I want to go back [to the children’s hospital]. The unknown, when you are talking life and death, can be terrorizing.

—Amy Thompson, parent

In April, hospitalists trained in both internal medicine and pediatrics will convene at SHM’s annual meeting in San Diego to educate their peers in managing difficult and unfamiliar situations. (The April 4 workshop, “Demystifying Medical Care of Adults with Chronic Diseases of Childhood: What the Hospitalist Should Know,” has limited seating; visit to register.)

At UCSD-affiliated Rady Children’s Hospital, hospitalists encountered a patient who was very agitated and combative toward staff. That wasn’t so unusual, except that the patient was quite large in size. “They were uncomfortable with the physical nature of the interaction,” Dr. Chang says.

The physicians and nurses on a pediatric floor also might not be comfortable with obstetrics, and they might lack the equipment for monitoring fetal heart tones and other vitals. In this case, a pregnant teen would be best served in an adult hospital. On the flip side, an adult hospital might not have a blood pressure cuff small enough for some adolescent patients, says Heather Toth, MD, program director of the med-peds residency at the Medical College of Wisconsin in Milwaukee. Collaboration between adult and pediatric providers is essential in ironing out these types of kinks.

Ironing out these types of kinks is crucial. “The worst mistake you can make is to put off planning for the transition,” says Emily Chapman, MD, a pediatric hospitalist at Children’s Hospitals & Clinics of Minnesota in Minneapolis. “When families are in crisis, they return to what they know, so they are likely to show up in your pediatric emergency room even though their child is now 19 or 20 years old.”

That’s why Dr. Chapman recommends introducing the family to a new health provider for a “get-acquainted visit,” she says. “The medical history can be reviewed, and the patient and doctor can begin to build a relationship.” Once that initial rapport has been established, in crisis, “they’re much more likely to seek out the new provider rather than fall back on their old support system.”

Dr. Chapman was part of a team that assisted with the move to adult care for a Down syndrome patient whom she had known since the patient was about 7 years old. “As he approached about the age of 16, we worked on transitioning his care over a few years period of time,” she explains, “to involve him with adult specialists and adult primary care that could manage him as he got older.”

However, Dr. Chapman cautions against switching the patient’s providers all at once. Instead, she says, “You would change an element of the team, have some period of overlap with the old players and new players, before transitioning the rest of the team.”

Susan Kreimer is a freelance medical writer based in New York.


  1. Diller L. Adult primary care after childhood acute lymphoblastic leukemia. N Engl J Med. 2011;365:1417-1424.

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