Racial disparities in hydrocephalus mortality and shunt revision: a study from the Hydrocephalus Clinical Research Network

OBJECTIVE Several studies of administrative data have noted higher mortality rates for Black/African American children with shunted hydrocephalus. A longitudinal study of children with hydrocephalus secondary to myelomeningocele showed lower lifetime rates of shunt revision in minority children compared to White children, indicating a possible disparity in hydrocephalus treatment. The goal of this study is to identify racial and ethnic disparities in mortality or in shunt revision rates by using the Hydrocephalus Clinical Research Network (HCRN) hydrocephalus registry sample. METHODS The HCRN registry was queried for patients with shunted hydrocephalus for whom data on all lifetime hydrocephalus procedures were available. Patients with a primary shunt placement prior to 2023 were included, with follow-up extending through March 19, 2024. A Cox proportional hazards model was created to determine the effect of race and ethnicity on mortality while controlling for age at initial shunt placement, sex, hydrocephalus etiology, gestational age at birth, and presence of complex chronic conditions. Similarly, a proportional means model was used to evaluate association with lifetime number of shunt revision surgeries. The authors’ hypothesis was that when controlling for other variables, minority children would have higher mortality and fewer shunt revision surgeries than White children. RESULTS A total of 5656 children were included in the analysis of mortality. There were 579 deaths. Race and ethnicity were independently associated with mortality, with Black (HR 1.32, 95% CI 1.05–1.65), other non-White (HR 1.39, 95% CI 1.03–1.86), and Hispanic (HR 1.50, 95% CI 1.22–1.84) children having a higher mortality rate than White children. In the analysis of 4081 children with shunts, Hispanic ethnicity was also independently associated with fewer total shunt revisions (HR 0.84, 95% CI 0.72–0.98). CONCLUSIONS In children with hydrocephalus, when controlling for other factors, there is a higher mortality rate among Hispanic, Black, and other non-White children, and fewer shunt revisions among Hispanic children. These findings highlight important potential disparities in hydrocephalus treatment.