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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.
Daniels et al. (Thu,) studied this question.