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Background/objectiveWe sought to understand healthcare utilization and barriers to care among youth with chronic illness who interact frequently with the healthcare system.MethodsThis was a retrospective analysis of healthcare utilization for youth ≤25 years of age with chronic illness during one calendar year (1 January 2021-31 December 2021) in a single urban academic healthcare system. Inclusion criteria were (1) having at least one healthcare encounter in the calendar year of 2021 and (2) having at least six healthcare encounters over the preceding 3-year period or having a qualifying chronic illness. Demographic and clinical characteristics were collected along with self-reported and derived social determinants of health. Univariable and multivariable regression models were created to identify predictors of missed clinic visits, telehealth use, and activated patient portal accounts.ResultsThe cohort (N = 14,245) was demographically, clinically, and socioeconomically diverse. The youth had frequent clinic visits (median 9, IQR 4-18), multiple subspecialty care referrals (median 4, 1-8), were prescribed multiple medications (median 6, 3-10), and a high proportion received emergency department (18%) or inpatient treatment (15%). Race and public insurance were significant predictors of missed clinic visits and telehealth use. Primary language was a significant predictor of patient portal activation.ConclusionsYouth with chronic illness who are high users of the healthcare system face a high burden of clinic, emergency room, and hospital visits, referrals, and medications. Systematic efforts to lower the healthcare burden and improve care access should address existing racial and socioeconomic disparities affecting this patient population, who are likely to need frequent healthcare over their lifetime.

BackgroundSocial determinants of health (SDH) greatly influence outcomes during the first year of treatment in rheumatoid arthritis, a disease similar to polyarticular juvenile idiopathic arthritis (pJIA). We investigated the correlation of community poverty level and other SDH with the persistence of moderate to severe disease activity and functional disability over the first year of treatment in pJIA patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance Registry.MethodsIn this cohort study, unadjusted and adjusted generalized linear mixed effects models analyzed the effect of community poverty and other SDH on disease activity, using the clinical Juvenile Arthritis Disease Activity Score-10, and disability, using the Child Health Assessment Questionnaire, measured at baseline, 6, and 12 months.ResultsOne thousand six hundred eighty-four patients were identified. High community poverty (≥20% living below the federal poverty level) was associated with increased odds of functional disability (OR 1.82, 95% CI 1.28-2.60) but was not statistically significant after adjustment (aOR 1.23, 95% CI 0.81-1.86) and was not associated with increased disease activity. Non-white race/ethnicity was associated with higher disease activity (aOR 2.48, 95% CI: 1.41-4.36). Lower self-reported household income was associated with higher disease activity and persistent functional disability. Public insurance (aOR 1.56, 95% CI 1.06-2.29) and low family education (aOR 1.89, 95% CI 1.14-3.12) was associated with persistent functional disability.ConclusionHigh community poverty level was associated with persistent functional disability in unadjusted analysis but not with persistent moderate to high disease activity. Race/ethnicity and other SDH were associated with persistent disease activity and functional disability.

BackgroundThe impact of social determinants of health on children with polyarticular juvenile idiopathic arthritis (pJIA) is poorly understood. Prompt initiation of treatment for pJIA is important to prevent disease morbidity; however, a potential barrier to early treatment of pJIAs is delayed presentation to a pediatric rheumatologist. We examined the impact of community poverty level, a key social determinant of health, on time from patient reported symptom onset to first pediatric rheumatology visit among pJIA patients enrolled in the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Registry.MethodsThis is a cohort study of pJIA patients in the CARRA registry who lived in the United States from July 2015-February 2020. The primary exposure was community poverty level derived by geocoding patient addresses. The primary outcome was time to first rheumatology appointment. Kaplan-Meier analysis was performed to analyze time to first rheumatologist visit, stratified by community poverty and family income. Log-rank tests were used to identify differences between groups. Adjusted cox proportional-hazards models were used to determine the relationship between community poverty level and time from onset of disease symptoms to date first seen by rheumatologist.ResultsA total of 1684 patients with pJIA meeting study inclusion and exclusion criteria were identified. Median age of onset of pJIA was 7 years (IQR 3, 11), 79% were female, 17.6% identified as minority race and/or ethnicity, and 19% were from communities with ≥20% community poverty level. Kaplan-Meier analysis by community poverty level (