Racial disparities in health care access among pediatric patients with craniosynostosis

OBJECTIVE Disparities in surgical access and timing to care result from a combination of complex patient, social, and institutional factors. Due to the perception of delayed presentation for overall health care services and treatment in African American patients on the part of the senior author, this study was designed to identify and quantify these differences in access and care between African American and Caucasian children with craniosynostosis. In addition, hypotheses regarding reasons for this difference are discussed. METHODS A retrospective study was conducted of 132 children between the ages of 0 and 17 years old who previously underwent operations for craniosynostosis at a tertiary pediatric care facility between 2010 and 2013. Patient and family characteristics, age at surgical consultation and time to surgery, and distance to primary care providers and the tertiary center were recorded and analyzed. RESULTS Of the 132 patients in this cohort, 88% were Caucasian and 12% were African American. The median patient age was 5 months (interquartile range [IQR] 2-8 months). African Americans had a significantly greater age at consult compared with Caucasians (median 341 days [IQR 192-584 days] vs median 137 days [IQR 62-235 days], respectively; p = 0.0012). However, after being evaluated in consultation, there was no significant difference in time to surgery between African American and Caucasian patients (median 56 days [IQR 36-98 days] vs median 64 days [IQR 43-87 days], respectively). Using regression analysis, race and type of synostoses were found to be significantly associated with a longer wait time for surgical consultation (p = 0.01 and p = 0.04, respectively, using cutoff points of ≤ 180 days vs > 180 days). Distance traveled to primary care physicians and to the tertiary care facility did not significantly differ between groups. Other factors such as parental education, insurance type, household income, and referring physician type also showed no significant difference between racial groups. CONCLUSIONS This study identified a correlation between race and age at consultation, but no association with time to surgery, distance, or family characteristics such as household income, parental education, insurance type, and referring physician type. This finding implies that delays in early health-seeking behaviors and subsequent referral to surgical specialists from primary care providers are the main reason for this delay among African American craniofacial patients. Future studies should focus on further detail in regards to these barriers, and educational efforts should be designed for the community and the health care personnel caring for them.