摘要：Objective. 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. Methods. 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. Results. 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). Conclusions. 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. Children with chronic illnesses rely on access to experts for many of their health care needs. These needs include frequent visits to specialists, expensive prescription medications, and other state-of-the-art interventions. Although traditional indemnity or fee-for-service plans allow patients unrestricted access to care, the evolution of managed care as a primary payer for services has caused patients and providers alike to voice concerns that this form of insurance may adversely affect access to care. Despite well-established guidelines for immunizations, infants in an ambulatory setting who were enrolled in Medicaid managed care did not have improved rates of immunizations when compared with children who had Medicaid fee-for-service. 1 Given that immunization schedules are well delineated, questions arise as to the effectiveness of managed care in meeting guidelines for care of patients with chronic illnesses. Konstan et al. reported that 40% of cystic fibrosis (CF) patients did not meet the recommended criteria for routine evaluation and monitoring and that managed care might have restricted access to specialty care (CF centers). 2 Compared with healthy children, costs for medical care for children with chronic illnesses are higher. Newacheck et al. showed that children with chronic illnesses use hospital and outpatient services 10-fold more than well children. 3 Ireys et al. reported that 8 chronic illnesses termed “tracer conditions” were responsible for disproportionate consumption of available health care dollars in a Medicaid program. 4 Fowler and Anderson demonstrated that regardless of insurance type, costs of services for healthy children were predictable, whereas the costs of services for children with chronic illnesses were underestimated. 5 Although it is logical that a greater economic burden on the payer, family, or both, may affect access to care among chronically ill children, other factors related to socioeconomic status (e.g., caregiver’s education and employment status) may also play a role. 6 – 9 CF is an example of this type of chronic illness. CF is a common genetic disorder characterized by tenacious secretions in multiple organs, most notably the lung, pancreas, and liver, with symptoms typically appearing early in life. 10 Formerly, children died at an early age, but adherence to treatment guidelines developed over the past 2 decades and the use of comprehensive centralized care have increased the median survival rate to 31.6 years. 11 , 12 Approximately 85% of all CF patients in the United States receive care from multidisciplinary CF centers that are part of a network accredited by the Cystic Fibrosis Foundation. CF centers use guidelines to deliver care and submit individual patient data to a national patient registry. CF centers also collaborate in educational programs and basic and clinical research. Such a well-organized network provides a good sampling frame and makes CF an attractive model to evaluate the effect of health insurance coverage on access to health care among patients with a chronic disease. We hypothesized that managed care limited use of CF centers by children with managed care compared with children with non-managed care. The outcome was whether the child attended the CF center in the past 4 months, as called for in the national guidelines.
