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Children with spina bifida experience varying rates of disease complications and health system overutilization. Data on sociodemographics, urinary tract infection, clean intermittent catheterization, and health system utilization were collected from caregiver-patient dyads. Newest Vital Sign (NVS) and Brief Health Literacy Screen (BRIEF) were administered to evaluate health literacy (HL). In total, 105 dyads completed enrolment with 24.8% versus 12.4% of caregivers scoring poor/marginal on the NVS and BRIEF, respectively. Nearly half on clean intermittent catheterization missed a catheterization over the previous week. Medicaid insurance, parental education, and household income predicted HL ( P < .01). Over the preceding 5 years, 68.5% visited our hospital’s emergency department. Eighteen (25%) visited the emergency department >6 times and 12 incurred charges over $50 000. Caregivers of children who missed ≥4 catheterizations per week had lower NVS scores ( P = .03). Children with spina bifida represent high utilizers, and consideration of sociodemographic and HL differences is necessary when tailoring care plans.