Inequities in Therapy for Infantile Spasms: A Call to Action

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 Grinspan^{16

17}; Pediatric Epilepsy Research Consortium; National Infantile Spasms Consortium

Affiliations

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.

PMID: 35388521
PMCID: PMC9482145
DOI: 10.1002/ana.26363

Inequities in Therapy for Infantile Spasms: A Call to Action

Fiona M Baumer et al. Ann Neurol. 2022 Jul.

. 2022 Jul;92(1):32-44.

doi: 10.1002/ana.26363. Epub 2022 Apr 28.

Authors

Affiliations

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.

PMID: 35388521
PMCID: PMC9482145
DOI: 10.1002/ana.26363

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.

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Conflict of interest statement

Potential Conflicts of Interest

The NISC prospective study was supported by the Pediatric Epilepsy Research Foundation and the American Epilepsy Society. FMB receives funding for her research efforts from the NINDS K23NS116110. Unrelated to this study, TL has performed consulting for Lundbeck and Upsher Smith, companies selling vigabatrin, Amzell, a company investigating synthetic hormone treatment, and through BCH TL has conducted investigator-initiated studies funded by Mallinckrodt, a company selling ACTH, and investigator-initiated studies funded by Lundbeck and Upsher Smith, companies selling vigabatrin. Unrelated to this study, TL filed intellectual property related to epilepsy and IS diagnosis.

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References

1. Begley C, Basu R, Reynolds T, et al. Sociodemographic disparities in epilepsy care: results from the Houston/New York City health care use and outcomes study. Epilepsia 2009;50:1040–1,050. - PubMed
1. Szaflarski JP, Bebin EM, Comi AM, et al. Long-term safety and treatment effects of cannabidiol in children and adults with treatment-resistant epilepsies: expanded access program results. Epilepsia 2018;59:1540–1,548. - PMC - PubMed
1. Szaflarski M, Wolfe JD, Tobias JGS, et al. Poverty, insurance, and region as predictors of epilepsy treatment among US adults. Epilepsy Behav 2020;107:107050. - PMC - PubMed
1. Bautista R, Jain D. Detecting health disparities among Caucasians and African-Americans with epilepsy. Epilepsy Behav 2011;20:52–56. - PubMed
1. Hamade Y, Palzer E, Helgeson E, et al. Persistent racial and ethnic disparities as a potential source of epilepsy surgery underutilization: analysis of large national datasets from 2006–2016. Epilepsy Res 2021;176:106725. - PubMed

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Inequities in Therapy for Infantile Spasms: A Call to Action

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Inequities in Therapy for Infantile Spasms: A Call to Action

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