Race, ethnicity and patient-reported outcomes in childhood-onset systemic lupus erythematosus

CARRA Registry Investigators

Research output: Contribution to journalArticlepeer-review

2 Scopus citations


Objective This study assesses the association of race/ethnicity with the Patient-Reported Outcomes Measurement Information System (PROMIS®) in childhood-onset systemic lupus erythematosus (cSLE) patients from the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry. Methods cSLE patients enrolled in the CARRA Registry within two years of cSLE diagnosis who met ACR and/or SLICC classification criteria for lupus were included. Baseline demographics, laboratory, and disease features as well as patient-reported outcomes were obtained. Multivariable linear regression analysis was used to examine the association of race and ethnicity with PROMIS scores at registry enrolment. Results 425 cSLE patients met inclusion criteria: 83.8% were female, 30.6% non-Hispanic White, 29.7% Black, 22.1% Hispanic. The mean age at diagnosis was 13.9 years (SD 2.5). Household income and highest parental education varied by race/ethnic group, as did frequency of rash, leukopenia, and anti-Smith antibodies. The cohort had low-moderate baseline disease activity (SLEDAI mean: 6.0 [SD 6.7]). The overall PROMIS Global Health mean T-score was 38.6 (SD 6.5), more than one standard deviation below the general population mean of 50. There was no association between race/ethnicity and PROMIS scores in multivariable linear regression analysis. Conclusion In this multiethnic paediatric lupus cohort, PROMIS global health was lower when compared with the general paediatric US population. Moreover, PROMIS global health, pain interference, and physical function mobility did not vary across races/ethnicities.

Original languageEnglish
Pages (from-to)186-194
Number of pages9
JournalClinical and Experimental Rheumatology
Issue number1
StatePublished - Jan 2023


FundersFunder number
National Institutes of Health
National Institute of Arthritis and Musculoskeletal and Skin Diseases
Arthritis Foundation
Childhood Arthritis and Rheumatology Research Alliance


    • health disparities
    • paediatric lupus
    • patient-reported outcomes


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