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Disparities in Access to Legacy-Oriented Interventions at End-of-Life for Pediatric Oncology Patients: A Decedent Cohort Review
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  • Sarah Daniels,
  • Nelson D. Franqui-Rios,
  • Suraj Sarvode Mothi,
  • Elizabeth Gaitskill,
  • Kathryn Cantrell,
  • Erica Kaye
Sarah Daniels
St Jude Children's Research Hospital

Corresponding Author:sarah.daniels@stjude.org

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Nelson D. Franqui-Rios
Ponce Health Sciences University
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Suraj Sarvode Mothi
St Jude Children's Research Hospital
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Elizabeth Gaitskill
St Jude Children's Research Hospital
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Kathryn Cantrell
Texas Woman's University
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Erica Kaye
St Jude Children's Research Hospital
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Abstract

Background: Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end-of-life and during bereavement. Certified Child Life Specialists often provide these services, and presently little is known about whether disparities exist in the provision of legacy-oriented interventions. Methods: In this retrospective decedent cohort study, we examined demographic and clinical characteristics from a sample of 678 pediatric oncology patients who died between 2015-2019. Bivariate analysis assessed differences between patients who received any versus no legacy-oriented intervention. Uni- and multivariable logistic regression models assessed associations of baseline characteristics and likelihood of receiving legacy-oriented intervention. Further multivariable analysis explored joint effects of significant variables identified in the univariable analysis. Results: 52% of patients received a legacy-oriented intervention. Older adolescents (≥13 years) had lower odds (OR: 1.73, p=0.007) of receiving legacy-oriented interventions than younger ones. Patients with Home/hospice deaths showed decreased likelihood (OR: 19.98, p<0.001) compared to patients who passed away at SJCRH locations. Hispanic patients (OR: 1.53, p=0.038) and those in palliative care (OR: 10.51, p<0.001) were more likely to receive interventions. No significant race association was noted. Conclusion: All children and adolescents with cancer deserve quality care at end-of-life, including access to legacy-oriented interventions, yet nearly half of patients in this cohort did not receive these services. By identifying demographic and clinical characteristics associated with decreased odds of receiving legacy-oriented interventions, healthcare professionals can modify end-of-life care processes to improve access. Introducing legacy-oriented interventions early and increasing exposure in community spaces may enhance access to legacy-oriented interventions for pediatric oncology patients.
Submitted to Pediatric Blood & Cancer
15 Apr 2024Assigned to Editor
15 Apr 20241st Revision Received
15 Apr 2024Submission Checks Completed
16 Apr 2024Reviewer(s) Assigned
29 Apr 2024Review(s) Completed, Editorial Evaluation Pending
30 Apr 2024Editorial Decision: Accept