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.

Background: Hydroxyurea remains underutilized in the pediatric sickle cell population despite its well-known efficacy in decreasing sickle cell complications and hospitalizations. Access to refills and liquid formulation remains a critical barrier to adherence to hydroxyurea regimens. This study was undertaken to determine the clinical impact of home-delivering compounded liquid hydroxyurea (LHU) to pediatric patients with sickle cell disease. Procedure/Methods: A retrospective cohort study was conducted using electronic health records and pharmacy databases. Pediatric patients younger than 21 years of hydroxyurea initiation from March 2016 to July 2020 who received compounded LHU from Boston Medical Center Pharmacy were included. The primary outcomes of the study were drug adherence (assessed by evaluating the proportion of days covered), rates of acute care utilization, laboratory values, and growth metrics before and after enrolling in the LHU delivery program. Results: The final cohort included 41 patients. Significant increases in hemoglobin 0.34 g/dl (95% CI: 0.04-0.63, p=0.02) and mean corpuscular volume 3.2 FI (95% CI: 0.92-5.4, p=0.007) occurred. Hospitalizations decreased by 51.3% (p=0.01), and acute chest syndrome episodes decreased by 86.4% (p=0.02) post-initiation of the LHU delivery program. Drug adherence had a median value of 0.95 one-year post-initiation of LHU. Conclusions: Home delivery of compounded LHU improved drug adherence, decreased hospitalizations, and improved laboratory outcomes in pediatric patients with sickle cell disease by overcoming barriers to access. Nationwide implementation of similar home delivery programs can significantly improve outcomes among pediatric patients with sickle cell disease.