Socioeconomic Factors Associated With Participation in Postmortem Tissue Donation in Pediatric Central Nervous System Tumors

Among the 23 patient families approached during the study time frame, 8/23 (35%) consented to participation. In the consented (C) versus 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% and 0% vs. D: 13% and 27%). Of all patients approached, two 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.

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Publication Details

Journal
Pediatric Blood & Cancer
Published
2024-11-12
DOI
https://doi.org/10.1002/pbc.31417
Primary Topic
Palliative Care and End-of-Life Issues
Type
article
Field-Weighted Citation Impact
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article

Socioeconomic Factors Associated With Participation in Postmortem Tissue Donation in Pediatric Central Nervous System Tumors

Melissa J. Williams, Nitin R. Wadhwani, Angela J. Waanders, Lauren Boland et al.
Pediatric Blood & Cancer
Palliative Care and End-of-Life Issues
article

Socioeconomic Factors Associated With Participation in Postmortem Tissue Donation in Pediatric Central Nervous System Tumors

Melissa J. Williams, Nitin R. Wadhwani, Angela J. Waanders, Lauren Boland, Alicia Lenzen, Ashley Plant, Judith M. Kabat, Ian Michelson
article en

Abstract

Among the 23 patient families approached during the study time frame, 8/23 (35%) consented to participation. In the consented (C) versus 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% and 0% vs. D: 13% and 27%). Of all patients approached, two 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.

Pediatric Blood & CancerVol. 72(2)
Lurie Children's Hospital (US), University of Louisville (US), Tel Aviv University (IL)
Openalex Percentile: Top 69%
Palliative Care and End-of-Life Issues
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