It is, therefore, a particular challenge to decide whether and how to discontinue therapy in a patient in remission on DMARDs. A key prospective study recently examined this question in patients with JIA in remission on methotrexate. After discontinuation of therapy, more than half flared over the ensuing two years. Some of these patients had elevated inflammatory markers using very sensitive assays, suggesting that they were probably not really in full remission after all, but others did not, and no clinical, demographic, or laboratory features could fully distinguish patients who flared from those who did not.8,9 Compounding the problem, some patients who flare after discontinuation of methotrexate cannot be “recaptured” on the same regimen, but may need addition of biologics to regain control, if indeed control can be established. Discontinuing therapy is, therefore, not without risk.
Transitioning to Adult Rheumatology
Based on these prognostic considerations, it is evident that many—if not most—children with JIA will need ongoing care as adults. Transition of care can be difficult for patient and providers alike. The barriers are several, and ideally, they should be addressed by pediatric rheumatologists well before the time of transfer.7,10 These barriers include attachment to long-time providers, lack of familiarity with the new provider and institution, the need to establish care not only in rheumatology but also in primary care and sometimes in other subspecialties, and the culture shock associated with moving from a family-centered care model to one in which the patient bears most of the responsibility. Medical records are usually transferred incompletely. Insurance changes may arise. All told, transition is a difficult period with a clear risk that important details, or even the patient himself or herself, may fall between the cracks.
At the Brigham and Women’s Hospital, we addressed this need by forming the Center for Adults with Pediatric Rheumatic Illness (CAPRI), which has become the transfer destination of the majority of pediatric rheumatology patients remaining in Boston after completing care at Boston Children’s Hospital. Some of these patients are cared for long term in CAPRI, while others are transferred to other providers—for example, the Brigham Lupus Center—once the transition has been accomplished successfully. Having directed CAPRI since its foundation in 2005, I have come to several conclusions with respect to such transitioning patients.
First, well-worn pathways for patient transition are important. At our adult hospital, out of more than forty rheumatology faculty members, only two handle the majority of these transfers—myself, as a rheumatologist trained in both the pediatric and adult medicine and rheumatology, and my colleague Derrick Todd MD, PhD, who spent several years working in CAPRI as a rheumatology fellow. Maintaining a single pathway for transition breeds familiarity and collegiality between pediatric and adult providers. Further, our CAPRI fellows and staff have particular knowledge and interest in pediatric rheumatic illnesses, something that patients recognize and that inspires trust and confidence. Having access to musculoskeletal ultrasound in the clinic facilitates the advanced imaging of involved joints without the need for ionizing radiation in adolescents and young adults.