Abstract

The evolution of managed care has raised concerns about differential access to care for children with cystic fibrosis (CF). We tested the hypothesis that children with CF with managed care attended CF centers less frequently compared with children with non-managed care. We conducted a prospective cohort study by telephone every 4 months to measure access to care at CF centers among 630 randomly selected patients aged 6-18 years from 15 US CF centers. We analyzed data with unconditional logistic regression and generalized estimating equations. Attendance at CF centers was significantly reduced among children with managed care (odds ratio [OR] = 0.74; 95% confidence interval [CI] = 0.57, 0.98; P=0.03) and among girls (OR=0.68; 95% CI=0.48, 0.97; P=0.04). Children with CF with managed care attended CF centers significantly less frequently than those with non-managed care. These findings suggest that children with CF with managed care may not have equal access to experts in CF as children with non-managed care. Families should consider this when selecting their medical insurance plan. These findings may apply to other children with special health care needs.

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