Abstract
BACKGROUND/OBJECTIVE: We sought to understand healthcare utilization and barriers to care among youth with chronic illness who interact frequently with the healthcare system. METHODS: This 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. RESULTS: The 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. CONCLUSIONS: Youth 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.