Racial/Ethnic and Insurance Status Disparities in Distance Traveled to Access Children’s Hospital Care for Severe Illness: the Case of Children with Leukodystrophies

Families of children with special health care needs may travel substantial distances to access specialized health care. However, it is not known how race/ethnicity, insurance status, and access to disease-specific specialty care affect travel distances. This analysis examines patients aged 18 years or younger who were discharged from a Pediatric Health Information System (PHIS) children's hospital (n = 52) with a diagnosis of an inherited leukodystrophy between October 1, 2015, and September 30, 2018 (n = 950 patients). Leukodystrophies are rare but very serious neurological illnesses, with elevated mortality and morbidity rates. Bivariate and hierarchical generalized linear models reveal that white children, privately insured children, and children visiting leukodystrophy specialist centers travel farther for children's hospital care. These findings indicate that socially privileged families travel greater distances to obtain specialized health care, which could affect clinical outcomes.