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“Socioeconomic factors associated with participation in post-mortem tissue donation in pediatric central nervous system (CNS) tumors”
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  • Judith Kabat,
  • Lauren K. Boland,
  • Melissa Williams,
  • Ian Michelson,
  • Alicia Lenzen,
  • Ashley Plant,
  • Nitin Wadhwani,
  • Angela Waanders
Judith Kabat
University of Louisville School of Medicine
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Lauren K. Boland
Ann & Robert H Lurie Children's Hospital of Chicago
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Melissa Williams
Ann & Robert H Lurie Children's Hospital of Chicago
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Ian Michelson
Tel Aviv University School of Medicine
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Alicia Lenzen
Ann & Robert H Lurie Children's Hospital of Chicago
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Ashley Plant
Ann & Robert H Lurie Children's Hospital of Chicago
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Nitin Wadhwani
Ann & Robert H Lurie Children's Hospital of Chicago
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Angela Waanders
Ann & Robert H Lurie Children's Hospital of Chicago

Corresponding Author:[email protected]

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Abstract

Background : The gift of post-mortem tissue donation is critical to pediatric CNS research. As a “Center of Excellence” for the Gift from a Child Program, our institution has a well-established post-mortem tissue donation program. Our objective was to determine if differences exist between patients that participated in and those that declined research-based autopsy. Procedure: We performed a single-institution retrospective chart review of pediatric patients with CNS malignancies who died from their disease between 1/1/2021 and 12/31/2022. Individual clinical, demographic, and socioeconomic data were assessed. Population-level data were estimated using Zip Code Tabulation Areas. Descriptive statistics were used to compare categorical data. Results : Among the 23 patient families approached during the study time frame, 8/23 (35%) consented to participation. In the consented (C) vs. declined (D) group, there was a higher percentage of White, Non-Hispanic/Latino patients by self-reported race (C: 88% vs. D: 55%) and no patients who identified as Asian or Hispanic/Latino (C: 0% & 0% vs. D: 13% & 27%). Of all patients approached, 2 required interpreters (9%) and both families declined participation. The rate of private insurance was higher in the consented group (C: 75% vs D: 47%) compared to Medicaid as primary insurance in the declined group (C: 13% vs D: 53%). Conclusions : Future research should aim to understand and improve identified disparities to ensure research advancements benefit all children with CNS malignancies. One area we plan to address is improved communication with non-English speaking families by partnering with our interpreter services.
20 Aug 2024Submission Checks Completed
20 Aug 2024Assigned to Editor
20 Aug 2024Submitted to Pediatric Blood & Cancer
21 Aug 2024Review(s) Completed, Editorial Evaluation Pending
21 Aug 2024Reviewer(s) Assigned
15 Sep 2024Editorial Decision: Revise Minor
30 Sep 2024Submission Checks Completed
30 Sep 2024Assigned to Editor
30 Sep 20241st Revision Received
01 Oct 2024Review(s) Completed, Editorial Evaluation Pending
04 Oct 2024Reviewer(s) Assigned
14 Oct 2024Editorial Decision: Accept