Disparities in Access to Legacy-Oriented Interventions at End-of-Life
for Pediatric Oncology Patients: A Decedent Cohort Review
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.