Background/Purpose: The chronic and complex nature of pediatric-onset rheumatic diseases (PRD) necessitates the need for effective health care transition from pediatric to adult providers. Prior studies suggest suboptimal transition and health outcomes for patients with PRD.  We utilized the Childhood Arthritis and Rheumatology Research Alliance (CARRA) registry to describe a large transition aged cohort with JIA and jSLE.

Methods: Baseline, cross-sectional data were obtained from the CARRA registry, a pediatric rheumatology database contributed to by 60 pediatric rheumatology centers in North America. Patients (pts) included were diagnosed with JIA or jSLE at ≤18 years (yrs) of age.  Pts ≥18 yrs of age were considered “transition aged.” Data abstracted included demographics, measures of disease activity (Systemic Lupus Erythematosus Disease Activity Index (SLEDAI), Childhood Arthritis Questionnaire (CHAQ), Health Related Quality of Life (HRQOL), parent or self-report pain scores with a Likert scale: 0 = no pain,10 = very severe pain) and current and past medications at baseline visit. Descriptive statistics and tests of comparison were used to compare the variables between pts younger and older than 18 yrs with JIA and jSLE.

Results:

Data from 6572 JIA and 1014 jSLE pts were analyzed; 466 (7.1%) JIA pts and 251 (24.7%) jSLE pts were ≥18 yrs old at baseline visit (Table 1).

Transition JIA pts were more likely than younger JIA pts to have enthesitis related arthritis or rheumatoid factor positive polyarticular JIA subtypes and had higher pain scores (3.2 vs 2.6, p=0.000). There was no difference in insurance, CHAQ, or HRQOL between transition and younger JIA pts. Among the transition JIA pts, 13% were on oral steroids, 45% were on methotrexate and 67% were on a TNF inhibitor.

Transition jSLE pts had longer disease duration and were more likely to be uninsured than younger jSLE pts (6% vs. 2.8%, p=0.03), but there was no difference in CHAQ, HRQOL and pain scores. SLEDAI scores were moderate (median of 4.0, range 0-45), and younger pts had higher SLEDAI scores than transition pts (5.1 vs. 4.3, p=0.046). As in transition JIA pts, older jSLE pts demonstrated polypharmacy with 62% taking steroids, 48% taking mycophenalate mofetil, and 30% ever prescribed intravenous cyclophosphamide.

Disease measures in transition JIA and jSLE cohorts were also compared (Table 2).

Conclusion:  In this large cohort of transition aged pts with PRD, there was significant disease activity and polypharmacy. This analysis highlights the need for comprehensive transitional support for disease management, medication monitoring and follow-up care.

Table 1. 

Table 2. 

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/a-description-of-the-transition-aged-population-in-the-childhood-arthritis-and-rheumatology-research-alliance-carra-registry/