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?”