RESUMO
OBJECTIVE: To evaluate whether racial differences across a variety of medical factors collected in a longitudinal clinical database at a specialty clinical for children with Down syndrome provide insight into contributors to racial disparity in mortality. STUDY DESIGN: Comprehensive medical histories of 763 children receiving medical care at a Down syndrome specialty clinic were retrospectively reviewed regarding prenatal, postnatal, and medical issues, as well as subspecialty referrals. Frequency calculations and logistic regression were performed. The National Death Index was used to query death record databases to correlate medical histories with mortality data. RESULTS: Prenatal drug use and intubation were significantly more frequent, but hyperbilirubinemia was significantly less frequent, in black children compared with white children with Down syndrome. Among children with Down syndrome aged <5 years, significant increases in referral to cardiology were seen for black children compared with white children. Trends were seen in an increased incidence of congenital heart disease for black children. Correlations with death records did not demonstrate differences in rates of cardiac-related deaths. Minimal racial disparity was seen for all other measures investigated. CONCLUSION: Racial disparity in mortality exists, but the underlying cause remains unidentified despite use of a comprehensive, longitudinal database of individuals with Down syndrome and review of death records. Referrals to cardiology might be a clue to the underlying cause, perhaps as an indicator of access to care, but cardiac disease does not account for the disparity in mortality.