Grant Number:	1R37CA296615-01 Interpret this number
Primary Investigator:	Johnston, Emily
Organization:	University Of Alabama At Birmingham
Project Title:	Unpacking Structural Racism in Quality of End-of-Life Care for Children with Cancer
Fiscal Year:	2025

Children with cancer experience racial and ethnic disparities in end-of-life (EOL) care. For instance, Black and Hispanic children with cancer are more likely to receive medically intense EOL care (e.g., intubation at EOL) than non-Hispanic White children. Additionally, pediatric oncology providers disproportionally underestimate the prognostic information sought by Black and Hispanic families. However, the mechanisms underlying the observed racial and ethnic disparities in quality of EOL care, particularly the role of structural racism, remain unknown. Structural racism involves “the structure, policies, practices, and norms resulting in differential access to the goods, services, and opportunities of society by race.” The Umaretiya and Bona framework for structural racism in palliative care postulates that structural racism impacts access to care, patient/family interactions with the healthcare system, and toxic stress; each, in turn, impacts the quality of care. We will examine the role of structural racism in explaining the observed racial and ethnic disparities in quality of EOL care among children with cancer. We will leverage Children’s Oncology Group (COG) resources, including the NCI’s Community Oncology Research Program (NCORP) network and resources. COG’s largest registry study (Project:EveryChild) enrolls children diagnosed with cancer at ≥200 participating sites. We will gather data about quality of EOL care via electronic health record (EHR) abstraction and bereaved parent surveys. Variables related to structural racism will include access to care (psychosocial support, household material hardship, payor, and neighborhood characteristics), patient-healthcare interaction (English proficiency, medical literacy, medical discrimination, education, and neighborhood characteristics), and toxic stress (everyday discrimination, resilience, and neighborhood characteristics). These variables will be collected via EHR abstraction at COG sites, bereaved parent surveys, and residential address linkages to determine neighborhood characteristics. We will use these data to examine the role of structural racism in disparities in EOL care and how to identify those at risk of receiving poor EOL care. Lastly, we will deepen our understanding of how structural racism affects quality of EOL care and potential interventions through semi-structured interviews with minority bereaved parents with high- and low-quality care. Using this approach: will address the following Aims: Aim 1: Examine the role of structural racism in the observed racial and ethnic disparities in quality of EOL care. Aim 2: Develop and validate a prediction model to identify children at risk of receiving poor-quality EOL care. Aim 3: Explore how structural racism influences quality of care and identify potential interventions. Upon completion of this proposal, we will have critical data about the role of structural racism in disparities in EOL care, a method to identify those who are most vulnerable, and potential interventions that could mitigate these disparities. This proposal will pave the way for targeted interventions to mitigate disparities in EOL care for children and similar work to improve end-of- life care for children with other complex chronic conditions.





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