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

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Abstract

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.

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Acknowledgements

The study was supported by NIH grant 3UL1TR002538-01S1. JLB is also supported by NIH grant U54NS115052-01, and by the Bray Presidential Chair in Child Neurology research. DXM is supported by NIH grants RL5GM118969, TL4GM118971, and UL1GM118970.

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Authors and Affiliations

  1. Department of Sociology, University of Utah, 480 S 1530 E. Room 0301, Salt Lake City, UT, 84112, USA

    Sara E. Grineski

  2. Department of Sociology and Anthropology, University of Texas at El Paso, 500 W University Ave, El Paso, TX, 79968, USA

    Danielle X. Morales

  3. Department of Geography, University of Utah, 260 South Central Campus Dr, Salt Lake City, UT, 84112, USA

    Timothy Collins

  4. Pediatric Analytics, Intermountain Healthcare, 295 Chipeta Way/Williams Building, Salt Lake City, UT, 84108, USA

    Jacob Wilkes

  5. Department of Pediatrics, University of Utah School of Medicine, 295 Chipeta Way/Williams Building, Salt Lake City, UT, 84108, USA

    Joshua L. Bonkowsky

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  1. Sara E. Grineski
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Correspondence to Sara E. Grineski.

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The last author has served as a consultant to Bluebird Bio, Inc.; Calico Life Sciences; Neurogene, Inc.; and to Enzyvant; is on the Board of Directors of wfluidx, Inc.; and owns stock in Orchard Therapeutics.

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Grineski, S.E., Morales, D.X., Collins, T. et al. Racial/Ethnic and Insurance Status Disparities in Distance Traveled to Access Children’s Hospital Care for Severe Illness: the Case of Children with Leukodystrophies. J. Racial and Ethnic Health Disparities 7, 975–986 (2020). https://doi.org/10.1007/s40615-020-00722-w

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