Bridging the treatment gap between pediatric, adult rheumatology care
FORT WORTH, Texas — With only approximately 300 pediatric rheumatologists practicing in the United States, many adult rheumatologists are accepting pediatric patients in their practice, with notable differences in degree of aggressive treatment and prescribing patterns, according to a presentation at the Rheumatology Nurses Society Annual Conference.
“There are not many children affected by rheumatic diseases in the United States, if you consider it collectively,” Karen Brandt Onel, MD, chief of the department of pediatric rheumatology, Hospital for Special Surgery, said. “As a nation of over 300 million people, none of these diseases are exactly common: Juvenile idiopathic arthritis is the most common and estimated to affect about 300,00 children in the U.S., while lupus affects about 30,000, dermatomyositis around 3,000, systemic vasculitis around 300, and [chronic recurrent multifocal osteomyelitis] about 100.”
According to the FDA criteria, among these rheumatic diseases, only JIA would not qualify for a rare or orphan disease status, Onel noted.
“Compared with a million and half people in the U.S. with rheumatoid arthritis alone, the magnitude is much different if we are discussing adult rheumatic diseases compared with pediatric rheumatic diseases,” she said.
Considering the rarity of these conditions among children, Onel warned that children treated by rheumatologists who do not specialize in pediatrics may not receive the same level of appropriate care as those treated by pediatric rheumatologists. Citing data from van Mater and colleagues published in Arthritis Care & Research, Onel noted that although 23% of surveyed adult rheumatologists reported treating children, most limited their practice to older adolescents. Additionally, 94% of adult rheumatologists reported that they were comfortable in diagnosing JIA, compared with 76% who felt comfortable treating this condition.
“What they found is that although one-quarter of adult rheumatologists treated children, they were much less likely to start children on biologic therapies, including conventional [disease-modifying antirheumatic drugs], than pediatric rheumatologists were, especially for children younger than 10 years of age,” Onel said. “It does make a difference, especially if there is discomfort in treating a patient as aggressively as one might otherwise treat an adult.”
Additionally, Onel cited that adult rheumatologists express discomfort due to the lack of pediatric dosing guidelines, especially those accounting for weight and age discrepancies.
“Because these are rare diseases, we do not have FDA-approved doses for medications,” Onel said. “No matter how much we would want pharmaceutical companies to test a medication in children, the companies will only manage them if it gives them something. Although there are rules within the FDA for patent exclusivity that will grant companies additional years if they test in children, there is not a real fiscal advantage to conducting these pediatric trials.”
Given the national shortage of pediatric rheumatologists, many of whom are confined predominantly to metropolitan areas, an estimated 50% of children with rheumatic diseases are being cared for by adult rheumatologists, according to Onel.
As the shortage of subspecialists continues, Onel emphasized the importance staying current with recent management guidelines and noted that increasing exposure to pediatric rheumatology in fellowship programs could help reduce treatment disparity and improve care of children with rheumatic diseases.
“The CDC estimates more than 800,000 visits to the doctor each year, just due to childhood arthritis alone,” Onel said. “As every pediatrician and pediatric nurse would know, if we don’t fix it when they are children, they will not be healthy adults — you don’t get a second chance.” – by Robert Stott
Onel KB. CARRA Registry and Current Pediatric Practice. Presented at: Rheumatology Nurses Society Annual Conference; Aug. 8-11, 2018; Fort Worth, Texas.
Disclosure: Onel reports no relevant financial disclosures.