Second, access to prior medical records is critical. In our center, this process is greatly facilitated through my concomitant staff appointment at Boston Children’s Hospital, our major referring center. More challenging has been the transition of patients who received care in other pediatric rheumatology centers, where we have no direct access to medical records. In these instances, contact with referring pediatric rheumatologists becomes especially important, since transferring patients often have a long history of studies and therapeutic attempts that the patient and family may remember only dimly.
In children with JIA, extinction of inflammation is the only acceptable therapeutic outcome.
Third, transition is a gradual process. Patients are usually accompanied by a parent at the first visit, and depending on the individual, parents may continue to come for some time. But they do not come forever, and we have not found it necessary to exclude parents at any specific point. By communicating directly with the patient, and indicating in various ways (such as addressing the patient as Mr. or Ms.) that the patient is expected to run the show, patients gradually assume responsibility. The timeframe over which this transition occurs varies markedly from individual to individual, in parallel with emotional maturation that often progresses into the mid-twenties. For patients in whom compliance and other issues pose a particular difficulty, we work closely with a CAPRI-affiliated social worker and nurse to provide optimal care.
An issue of particular difficulty in transitioning patients relates to addressing vocational failure. Career aspirations are typically formed in early adolescence. When this period is spent focusing on illness, opportunities pass by and can be difficult to recapture later. Pediatric rheumatologists, and other pediatric providers, need to help ensure that transitioning young adults are ready not only for adult care but also for adult life.7
Our CAPRI model is only one of many possibilities. For example, in Vancouver, British Columbia, pediatric rheumatology patients are referred around age 18 to the Young Adults with Rheumatic Diseases (YARD) clinic, directed by Lori Tucker, MD, and David Cabral, MBBS, where pediatric and adult rheumatologists work together to prepare patients for transfer to the adult clinic by age 22.11 Both CAPRI and YARD are built around the skills, interests, and physical and financial/insurance resources available locally. To the extent that these differ from center to center, transition programs will invariably require considerable customization.
Specific Issues in Management of the Adult with JIA
By and large, the management of the adult with JIA differs little from that of the adult arthritic patient. These issues have been reviewed in detail.7 The agents used, and the dosages employed, are all identical. It does not appear that cumulative exposure through childhood substantially limits the ability to use DMARDs in this population. As in any patient with longstanding arthritis, the ability to discern active inflammation from pain and stiffness due to chronic joint injury can become difficult. Joint replacement is sometimes necessary, and should be deferred as long as tolerable given the limited lifespan of prostheses. However, it is important not to delay joint replacement beyond the “window of opportunity,” which may be limited by progressive loss of bone stock, joint contracture, and muscle wasting. Osteoporosis should be managed appropriately, since adults with JIA tend to have lower bone density than healthy adults, in particular if there was substantial steroid exposure during adolescence.
