Abstract A037: Exploring disparities in the provision of child life legacy and bereavement services at SJCRH: Decedent cohort review
Authors: Daniels Sarah , Kaye Erica C. , Mothi Suraj S. , Gaitskill Libby , Cantrell Kathryn , Franqui-Ríos Nelson D. 
Published: January 2023

Disparities in end-of-life (EOL) care have been documented across cancer populations. For pediatric oncology patients, disparities in intensity of EOL care have been correlated with income, race, and ethnicity. However, less is known about disparities in psychosocial services provided at EOL for children with cancer. Child life specialists (CLS) work with pediatric oncology patients and families at EOL to provide key legacy interventions to offer support and mitigate complex bereavement. Presently, little is known about disparities in provision of these psychosocial services to children with cancer at EOL. In this retrospective decedent cohort study, we aimed to explore differences in receipt of legacy building services for children with cancer, stratified by race, ethnicity, primary language, diagnosis, and location of death. Using a comprehensive standardized tool, we abstracted data from the electronic medical record for 676 pediatric oncology patients who received care at a single academic pediatric cancer center and died between 2015 and 2019. More than half (52.1%) of patients/families received a legacy intervention during the illness course, at end of life, or following death. The most common legacy interventions included provision of a legacy item alongside a bereavement service (29.2%) or provision of a legacy item only (10.8%). Through univariate analysis, no racial disparities in legacy intervention provision were identified. Hispanic/Latino patients were more likely to receive legacy interventions compared to non-Hispanic patients (60.8% vs. 50.4%, p = 0.0474). Families who spoke Spanish were more likely to receive legacy and bereavement studies than those who spoke English or other languages (65.8% vs. 50.6% vs. 44.4%, p = 0.0317). Patients with brain tumors were less likely to receive legacy interventions compared to patients with hematologic malignancies or solid tumors, (32.0% vs. 35.1% vs. 32.9%, p &lt; 0.001). Brain tumor patients were also more likely to die at home compared to patients with hematologic malignancies or solid tumors (52.5% vs. 11.2% vs. 37.6%, p &lt; 0.001), suggesting that location of death may influence access to legacy interventions. These findings will inform the development and testing of targeted strategies to improve access to and provision of legacy interventions for all children with advanced cancer and their families.

Citation Format: Sarah Daniels, Erica C. Kaye, Suraj S. Mothi, Libby Gaitskill, Kathryn Cantrell, Nelson D. Franqui-Ríos. Exploring disparities in the provision of child life legacy and bereavement services at SJCRH: Decedent cohort review [abstract]. In: Proceedings of the 15th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2022 Sep 16-19; Philadelphia, PA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr A037.