Background/Purpose: Transition of pediatric lupus (pSLE) patients from pediatric to adult rheumatology care is historically difficult and challenging. Although our division routinely assesses for transition readiness, we do not administer a formal transition readiness questionnaire to evaluate ways in which transition preparedness can improve. 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. Descriptive statistics and paired t-tests were used.

Results: Thirty three patients with pSLE had documentation of transition from pediatric rheumatology to adult rheumatology within our institution. Twenty-six patients were female. Twelve patients were Black (36%), 7 patients were White (21%), and 5 patients were Asian (15%). 6 patients reported race as unknown or other. Four patients (12%) reported Hispanic ethnicity. The mean age at diagnosis was 12.7 +/- 2.9 years. The mean age at the first adult visit was 20.8 +/- 1.6 (range 18-24) years. The average time between last pediatric visit and first adult visit was 6.7 (median 3.0) +/-7.9 months. The mean SLEDAI score at final pediatric visit was 3.44 (median 3.0) +/- 3.7, and the mean SLEDAI score at approximately 12 (range 4-24) months after first adult visit was 6.59 (median 6.0) +/- 5.7 (p= 0.0008). The mean daily dose of prednisone at final pediatric visit was 10.6 (range 0-60, median 2.5) +/- 16.2 mg, and the mean daily dose of prednisone approximately 12 (range 4-24) months after first adult visit was 9.2 (range 0-50, median 2.5) +/- 14.2 mg (p=0.5898). Nineteen patients were on at least one steroid sparing medication at final pediatric visit, and 4 additional patients were started on a steroid sparing medication approximately 1 year (range 4 months-2 years) after first adult visit. Fourteen patients had been diagnosed with nephritis and underwent induction treatment while under pediatric care, and 2 additional patients developed nephritis post-transition.

Conclusion: Disease activity in pSLE increases as early as within the first 4 months after transition to adult rheumatology in our primarily Black cohort of pSLE patients. Daily prednisone dosing in patients on prednisone during pediatric care did not significantly decrease post-transition, suggesting continued active disease. Similarly, 4 patients who were not on treatment with immunosuppressive medications were started on at least 1 immunosuppressive post-transition. Analyses are currently underway to determine whether demographic and socioeconomic factors affect disease activity and medication use after transition in this population. Use of a formal assessment of transition readiness to assist with areas of weakness prior to transition may be beneficial.

« Back to 2019 ACR/ARP Annual Meeting

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/