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When treating adolescent patients who are making the important, sometimes bumpy crossing from a pediatric to an adult rheumatology practice, there’s no one-size-fits-all approach.
“We have to be flexible on the receiving end when talking with these patients, and flexible with their families, too,” says Peter A. Nigrovic, MD, director of the Center for Adults with Pediatric Rheumatic Illness (CAPRI) at the Brigham and Women’s Hospital and associate professor of medicine at Harvard Medical School. He’s also an attending physician at Boston Children’s Hospital. While one becomes a legal adult at 18, “cognitively, nothing happens abruptly. Everything happens gradually,” he says.
Dr. Nigrovic’s perspective on pediatric-to-adult care transitions is unique. He’s board certified in both pediatric and adult rheumatology, one of only about 30 such rheumatologists in the U.S. His research delves into how to best manage transition and the unique mechanisms of the conditions he treats. While these kids grow up, their chronic diseases are quite different from the adults they will one day sit beside in rheumatology waiting rooms.
At CAPRI, Dr. Nigrovic’s team includes two other attending physicians, a clinical fellow, a registered nurse, a physical therapist and a licensed clinical social worker. More than 500 patients have gone through transition at the clinic, founded in 2005. Patients are often referred directly to CAPRI by local pediatric rheumatologists. Some CAPRI patients are students coming to Boston to attend college who need a new rheumatology practice to continue their treatment.
Out on Their Own
Patients, their parents and clinicians all face challenges when adolescents transition from pediatric to adult rheumatologic care. Transition often starts around age 16, but “patients transition at different times and for different reasons. Sometimes, it’s just because they are getting older,” Dr. Nigrovic says.
One reason some patients transition is provider fatigue. “They have been at one practice for a while and need a fresh start. They need a new perspective on their care. Teens get sick of being in pediatric rheumatology practices, sitting in a waiting room full of toys and games. They don’t feel they belong there.”
Although patients may be ready to move on, self-management of a chronic, serious disease brings unfamiliar hurdles, Dr. Nigrovic says. Tasks that may seem simple to adults, such as scheduling an appointment or refilling prescriptions, are brand-new responsibilities for these patients. The Affordable Care Act allows children to stay on their parents’ insurance policies through age 26, which eases some of the financial stress of transition for many of his patients, he says.
Moving from a “model of care … that is family centered to one that’s self-driven is an abrupt transition that can be difficult for some patients,” says Dr. Nigrovic. Also, some parents may worry about their now-adult child’s health and want to retain control over his or her medical care, he says. “We typically find it best to manage family involvement on a case-by-case basis, most often easing the family gradually out of the decision process while recognizing that the final responsibility always resides with the adult patient.”
Transition should be carefully planned on an ad hoc basis, tailored to suit the individual patient, his or her family, finances or insurance coverage, and schedule with school, work or both, says Dr. Nigrovic. Most importantly, a patient needs to be emotionally prepared to take on new responsibilities. For cases where he expects transition to be challenging, Dr. Nigrovic may begin the process by first meeting the patient at Boston Children’s Hospital, even taking over care there so patients feel confident that no important medical issues will be neglected upon transfer.
“Every individual [differs in] how ready they are to be in charge of their own care. The process of independence, in most cases, happens gradually, naturally and doesn’t have to be forced” by parents, doctors or the healthcare system, he says. In the first few clinic visits, parents may accompany the young patient. Once they feel secure their child is ready to self-manage their care without their constant input, they’ll drop back.
“Some patients may need more logistical support. Originally, we thought that most transitioning patients would need a lot of help organizing their schedules and treatments, but most have not needed much.”
Some individuals face emotional and practical challenges as they grow up with a rheumatic disease. They may delay taking on care responsibilities or even thinking about what’s down the road, he says.
“In normal childhood, kids start to think seriously about their future, about money, jobs and lifelong ambitions, beginning in early adolescence. But if they are sick, their attention is diverted to focusing on their health. If a kid is lying in the hospital with a fever, you don’t ask what he wants to do after high school. Often, we see vocational problems among these patients. If a child is sick during the high school years, it’s hard to make the jump to college, or they may have physical disabilities that make it hard to get a job,” says Dr. Nigrovic. Some of his transitioning patients are small in stature or have joint deformities, and employers simply don’t give them a chance. “I try to hook them up with social workers, but we would like to do better.”
One new resource for clinicians, patients and their families is www.gottransition.org, which features tips and tracking tools to smooth transition. Dr. Nigrovic is one of the advisors for this program, created by the National Alliance to Advance Adolescent Health.
Pediatric Medical Challenges
Age at onset is not the only difference between pediatric and adult rheumatic disease, says Dr. Nigrovic. The two often have different clinical manifestations, including symptoms and lab findings. “Pediatric arthritis often can be accompanied by uveitis. Children with arthritis may have accumulated injuries over time, especially if their disease was not well controlled. They can have osteoarthritis in their joints at a young age, and their disease activity may be harder to determine,” he says.
Once they begin treatment at an adult-focused practice, these patients may present with unusual clinical issues or test results. Rheumatologists who treat adults may take it for granted that 70% of their arthritis patients will be seropositive, but “in pediatric patients, it’s rare to have seropositive disease, and before age 8, it’s almost unheard of,” he says.
These are intriguing questions for his ongoing research, including studies of the roles of mast cells and neutrophils in inflammatory synovitis, the genetics of juvenile arthritis, and how glycosylation affects immune function. He’s also chair of the Translational Research and Technology Committee of the Childhood Arthritis and Rheumatology Research Alliance (CARRA), a U.S./Canadian pediatric rheumatologic research alliance.
Pediatric lupus patients in transition to adult care are a particularly vulnerable population. They may present with a variety of serious manifestations, including skin, eye, joint or organ problems. Lupus may affect their brains, making critical thinking or decision making more of a challenge. They can have major setbacks if their transition isn’t managed properly, and discontinuity of care, because they disappear from the system after childhood, is a common problem, he says.
Culture Shock
Young patients new to an adult rheumatology practice may experience culture shock. “They are no longer treated with kid gloves,” says Dr. Nigrovic.
They need to learn to be less passive in their care and to ask questions, he says. “One of the most surprising things to me is how many of these patients aren’t aware of what disease they have. At diagnosis, when most of these explanatory conversations take place, many children are too young to understand. Then when they’re older, the fundamental questions, what do I have, and why? tend to get lost in the day-to-day management discussions.”
Transition is a nuanced process, more art than science in some aspects, says Dr. Nigrovic. “The transition to adult rheumatologic care is not as big of a shock as you might think. [Young adults] are not as naive as we make them out to be. … I think most of our patients feel that making this transition is not a big deal.”
Susan Bernstein is a freelance medical journalist based in Atlanta.
