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.”
