Background/Purpose: Transition of pediatric lupus (pSLE) patients from pediatric to adult rheumatology care is historically difficult and challenging. We aim to investigate disease activity and medication use in pediatric lupus patients before and after transition to adult care.

Methods: A retrospective chart review was conducted of all patients who were seen in our pediatric rheumatology clinic between the years 2003-2019 who fulfilled 1997 ACR classification criteria, were diagnosed with pSLE, and transitioned to our institution’s adult rheumatology division within 2-3 years of their last pediatric visit. Post-transition data was collected 4-24 months after initial adult visit. Descriptive statistics and Wilcoxon signed rank tests were used.

Results: Thirty three patients with pSLE had documentation of transition from pediatric to adult rheumatology within our institution. Twenty-six patients were female (78%). Fourteen patients were Black (42%), 7 patients were White (21%), 6 patients were Asian (18%), and 6 patients (18%) other/unknown. Four patients (12%) reported Hispanic ethnicity. The mean age at diagnosis was 12.7 +/- 2.9 years. The most common disease manifestations were presence of dsDNA antibody, low complements, and arthritis. Fourteen patients (42%) had been diagnosed with nephritis while under pediatric care. The mean age at final pediatric visit was 20.3 +/-1.6 years. The mean age at the first adult visit was 20.8 +/- 1.6 (range 18-24) years. The median time between final pediatric visit and first adult visit was 3.0 months (interquartile range [IQR] 1.6-9.2). The mean SLEDAI score at final pediatric visit was 3.44 +/- 3.7, and the mean SLEDAI score post-transition was 6.78 (median 6.0) +/- 5.8. The median increase in SLEDAI score between final pediatric visit and post-transition visit was 2.0 (IQR 0-6), and the mean increase was 3.3+/-5.2 (p=0.001). Of the 20 patients taking prednisone at final pediatric visit, the median daily dose was 10 mg (IQR 5-27.5 mg). Of the 19 patients taking prednisone post-transition, the median daily dose was 10 mg (IQR 5-30 mg). Fifty-four percent (7/13) of patients not taking prednisone prior to transition were on prednisone post-transition. Twenty patients (60%) were on at least one immunosuppressive at final pediatric visit, and 4 out of 13 additional patients (30%) were started on an immunosuppressive post-transition. The mean number of total medications (excluding steroids) increased after transition from 1.7+/-0.98 to 2.12 +/-1.11 (p=0.0493).  Younger age (< 22 years) at transition was not associated increased disease activity post transition (p=NS). Black race was not associated with increased disease activity post transition (p=NS).

Conclusion: Disease activity in pSLE increases as early as within the first 4 months after transition to adult rheumatology. Daily steroid dosing did not decrease and overall number of medications increased post-transition, suggesting continued active or worsening disease. Race and earlier age at transition did not have a significant effect on future disease activity, suggesting individual transition preparedness may affect future outcomes.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/worsening-disease-activity-and-inability-to-taper-corticosteroids-in-an-ethnically-diverse-cohort-of-pediatric-onset-lupus-patients-after-transition-to-adult-care-2/