Fiona M Baumer1, John R Mytinger2, Kerri Neville3, Christina Briscoe Abath4, Camilo A Gutierrez5, Adam L Numis6, Chellamani Harini4, Zihuai He1, Shaun A Hussain7, Anne T Berg8, Catherine J Chu9, William D Gaillard10, Tobias Loddenkemper4, Archana Pasupuleti10, Debopam Samanta11, Rani K Singh12, Nilika S Singhal6, Courtney J Wusthoff1, Elaine C Wirrell13, Elissa Yozawitz14, Kelly G Knupp15, Renée A Shellhaas3, Zachary M Grinspan16,17. 1. Department of Neurology, Division of Child Neurology, Stanford University School of Medicine, Palo Alto, CA, USA. 2. Department of Pediatrics, Division of Pediatric Neurology, Nationwide Children's Hospital, The Ohio State University, Columbus, OH, USA. 3. Department of Pediatrics, Division of Pediatric Neurology, University of Michigan (Michigan Medicine), Ann Arbor, MI, USA. 4. Department of Child Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA, USA. 5. Department of Neurology, University of Maryland Medical Center, Baltimore, MD, USA. 6. Department of Neurology, Division of Epilepsy, University of California San Francisco, San Francisco, CA, USA. 7. Department of Pediatrics, Division of Pediatric Neurology, University of California, Los Angeles, CA, USA. 8. Ann & Robert H. Lurie Children's Hospital of Chicago and Departments of Pediatrics and Neurology, Northwestern University Feinberg School of Medicine, Chicago, IL, USA. 9. Department of Neurology, Divisions of Child Neurology and Neurophysiology, Massachusetts General Hospital, Harvard Medical School, Boston, MA, USA. 10. Center for Neuroscience, Children's National Hospital, Washington, DC, USA. 11. Division of Child Neurology, Department of Pediatrics, University of Arkansas for Medical Sciences, Little Rock, AR, USA. 12. Department of Pediatrics, Atrium Health-Levine Children's, Charlotte, NC, USA. 13. Department of Neurology, Divisions of Epilepsy and Child and Adolescent Neurology, Mayo Clinic, Rochester, MN, USA. 14. Isabelle Rapin Division of Child Neurology of the Saul R Korey Department of Neurology and Department of Pediatrics, Montefiore Medical Center, New York, NY, USA. 15. Department of Pediatrics and Neurology, University of Colorado, Aurora, CO, USA. 16. Department of Pediatrics, New York-Presbyterian Komansky Children's Hospital, Weill Cornell Medicine, New York, NY, USA. 17. Department of Healthcare Policy & Research, Weill Cornell Medicine, New York, NY, USA.
Abstract
OBJECTIVE: The aim of this study was to determine whether selection of treatment for children with infantile spasms (IS) varies by race/ethnicity. METHODS: The prospective US National Infantile Spasms Consortium database includes children with IS treated from 2012 to 2018. We examined the relationship between race/ethnicity and receipt of standard IS therapy (prednisolone, adrenocorticotropic hormone, vigabatrin), adjusting for demographic and clinical variables using logistic regression. Our primary outcome was treatment course, which considered therapy prescribed for the first and, when needed, the second IS treatment together. RESULTS: Of 555 children, 324 (58%) were non-Hispanic white, 55 (10%) non-Hispanic Black, 24 (4%) non-Hispanic Asian, 80 (14%) Hispanic, and 72 (13%) other/unknown. Most (398, 72%) received a standard treatment course. Insurance type, geographic location, history of prematurity, prior seizures, developmental delay or regression, abnormal head circumference, hypsarrhythmia, and IS etiologies were associated with standard therapy. In adjusted models, non-Hispanic Black children had lower odds of receiving a standard treatment course compared with non-Hispanic white children (odds ratio [OR], 0.42; 95% confidence interval [CI], 0.20-0.89; p = 0.02). Adjusted models also showed that children with public (vs. private) insurance had lower odds of receiving standard therapy for treatment 1 (OR, 0.42; CI, 0.21-0.84; p = 0.01). INTERPRETATION: Non-Hispanic Black children were more often treated with non-standard IS therapies than non-Hispanic white children. Likewise, children with public (vs. private) insurance were less likely to receive standard therapies. Investigating drivers of inequities, and understanding the impact of racism on treatment decisions, are critical next steps to improve care for patients with IS. ANN NEUROL 2022;92:32-44.
OBJECTIVE: The aim of this study was to determine whether selection of treatment for children with infantile spasms (IS) varies by race/ethnicity. METHODS: The prospective US National Infantile Spasms Consortium database includes children with IS treated from 2012 to 2018. We examined the relationship between race/ethnicity and receipt of standard IS therapy (prednisolone, adrenocorticotropic hormone, vigabatrin), adjusting for demographic and clinical variables using logistic regression. Our primary outcome was treatment course, which considered therapy prescribed for the first and, when needed, the second IS treatment together. RESULTS: Of 555 children, 324 (58%) were non-Hispanic white, 55 (10%) non-Hispanic Black, 24 (4%) non-Hispanic Asian, 80 (14%) Hispanic, and 72 (13%) other/unknown. Most (398, 72%) received a standard treatment course. Insurance type, geographic location, history of prematurity, prior seizures, developmental delay or regression, abnormal head circumference, hypsarrhythmia, and IS etiologies were associated with standard therapy. In adjusted models, non-Hispanic Black children had lower odds of receiving a standard treatment course compared with non-Hispanic white children (odds ratio [OR], 0.42; 95% confidence interval [CI], 0.20-0.89; p = 0.02). Adjusted models also showed that children with public (vs. private) insurance had lower odds of receiving standard therapy for treatment 1 (OR, 0.42; CI, 0.21-0.84; p = 0.01). INTERPRETATION: Non-Hispanic Black children were more often treated with non-standard IS therapies than non-Hispanic white children. Likewise, children with public (vs. private) insurance were less likely to receive standard therapies. Investigating drivers of inequities, and understanding the impact of racism on treatment decisions, are critical next steps to improve care for patients with IS. ANN NEUROL 2022;92:32-44.
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