Background Individuals with childhood-onset systemic lupus erythematosus (cSLE) must transfer from paediatric- to adult-oriented health care as they enter adulthood. However, few studies have assessed outcomes of the transition from paediatric to adult care in cSLE. The goal of this study is to examine disease activity and health care utilisation among young adults with cSLE who are undergoing or have recently completed the transition to adult care.

Materials and methods Data derive from the baseline interview of the Paediatric Lupus Outcomes Study, an annual longitudinal telephone survey of 91 diverse English- and Spanish-speaking participants age 18–30 with confirmed cSLE (age of onset <18 years). Subjects were recruited from paediatric and adult rheumatology clinics; diagnosis of cSLE was confirmed by chart review. To define a cohort undergoing transition from paediatric to adult care, we included respondents who received care from a paediatric rheumatologist currently or in the past (N = 85). We assessed disease activity according to the Systemic Lupus Activity Questionnaire (SLAQ), self-reported SLE flare in the past 3 months, current immunosuppressive medication use (any steroid, DMARD or biologic medication), current health insurance coverage, and health care utilisation over the past year. Bivariate analyses were used to compare individuals cared for by adult rheumatologists to those who continue in paediatric care.

Results Mean baseline age was 21 ± 3 years, and mean age at diagnosis was 13 ± 3 years. Ethnicities included White (48%), Black (5%), Asian (20%), Latino (24%), multi-ethnic (5%) and other (6%). 38 respondents (45%) had transferred care out of paediatric rheumatology (Table 1). Most respondents were currently insured (93%), however those who had transferred were more likely to report difficulty obtaining insurance (34% v. 11%, p = 0.008). 32% had visited an emergency department and 27% had received inpatient care in the past year, with similar rates in adult and paediatric care groups. There was no difference in disease activity (SLAQ score 9 v. 11) or likelihood of self-reported flare over the last 3 months (31% vs. 26%) among those who had transferred to adult rheumatology vs. those who had not. Those who remained in paediatric care were significantly more likely to have seen a rheumatologist in the past year (94% v. 68%, p = 0.002) and more likely to be taking immunosuppressive medications (89% v. 34%, p < 0.001).

Conclusions Many individuals in this cohort of young adults with cSLE continue with active lupus. In spite of similar disease activity among those who had left paediatric care and those who had not, young adults who had transferred to adult care were significantly less likely to access routine rheumatology care or take immunosuppressive medication, and more likely to encounter difficulty obtaining health insurance coverage. Improving access to adult rheumatology care may be important to prevent poor health outcomes in cSLE.

Acknowledgements Research reported in this publication was supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases of the National Institutes of Health under Award Number 5K23AR066064-03. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.”