Unmet social needs in pediatric rheumatic disease: a study of disparities

Abstract Background and Objective Children with rheumatic diseases experience social determinants of health that influence access to care and outcomes, yet data in pediatric rheumatology are limited. We aimed to characterize caregiver-reported social determinants of health in juvenile idiopathic arthritis, systemic lupus erythematosus, and juvenile dermatomyositis and assess disparities by diagnosis, language, ethnicity, insurance, and neighborhood disadvantage. Methods We conducted a cross-sectional study of 417 caregiver surveys administered in English or Spanish during routine clinic visits (February to May 2023). Surveys assessed education, health literacy, food security, housing stability, transportation, and social work needs. Neighborhood deprivation was quantified using the Area Deprivation Index. Associations between SDoH and sociodemographic factors, insurance, diagnosis, and area of deprivation index were analyzed using univariate and post-hoc tests with complete case analysis. Results Mean cohort age was 12.1 years; 74.1% were female, 77.0% White, and 36.1% Hispanic/Latino. Overall, 39.1% of caregivers reported ≥ 1 unmet social need, yet only 8.9% requested social work support. Unmet needs were highest among Spanish-speaking families (83%), Hispanic/Latino caregivers (56%), and publicly or uninsured households (59% and 45%). Systemic Lupus (44%) and Juvenile Dermatomyositis (34%) caregivers reported more food insecurity than Juvenile Arthritis (18%). Higher area of deprivation index was associated with lower caregiver education, limited health literacy, food insecurity, transportation barriers, and housing instability (all P < 0.05). Conclusions Children with rheumatic disease experience substantial social determinants of health-related inequities, especially those with Systemic lupus or Juvenile dermatomyositis, Hispanic/Latino ethnicity, Spanish-speaking, or non/underinsurance. Incorporating area of deprivation index-informed social determinants of health screening into pediatric rheumatology may help identify high-risk families and guide targeted, equitable interventions.