The impact of non-medical determinants of health on patient-reported outcomes in pediatric lupus: A CARRA registry study

Objectives Social determinants of health (SDOH) and race are associated with disease activity, including lower achievement of the low lupus disease activity state (LLDAS), but it is unknown whether these factors are associated with patient-reported outcomes (PROs). Among a cohort with childhood-onset systemic lupus erythematosus (cSLE) in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry, we investigated associations between race, SDOH, and PROs. Methods In this cSLE cohort study, the primary exposure was self-reported race and ethnicity with collected SDOH including insurance status and area deprivation index (ADI). Our primary outcomes were any functional disability by CHAQ (>0) and overall health by PROMIS Global Health-7 across follow-up. Multivariable regression models assessed these associations, adjusting for demographic and disease-related factors. Results Among 540 children with cSLE, most had CHAQ (86%) and PROMIS Global Health-7 (74%) scores collected at Registry enrollment. Functional disability was common (46%), and overall health was below average (median T score 38.8, IQR 34.0-42.1) at enrollment. In unadjusted and adjusted analyses, race, insurance, and ADI were not significantly associated with either outcome. However, PROMIS completion differed significantly by race ( p < 0.001). Conclusions Children with cSLE in the CARRA Registry commonly report deficits in functional status and overall health. Although race and SDOH were not significantly associated with PROs, differential PROMIS completion by race suggests the potential for bias in these estimates. Interventions to improve completeness and representativeness of PRO data collection are needed to support accurate assessment of health disparities in cSLE across all patient groups.