Unpacking Structural Racism in Quality of End-of-Life Care for Children with Cancer

Cancer is the leading cause of disease-related death among US children, making high quality end-of-life (EOL) care a critical component of cancer care. However, not everyone receives high quality EOL care and little is known about what drives variation in quality of EOL care. A recently developed framework for systematically examining differences in quality of palliative care in pediatric oncology posits that access to care, patient/ family interactions with the healthcare system, and stress all impact care quality. Further, we recently established quality measures for EOL care for children with cancer, including measures related to (i) location of death (e.g., death in preferred location), (ii) medically-intense EOL care (e.g., no mechanical ventilation in the last 14d), and (iii) supportive care services (e.g., palliative care in the last 30d). The new framework for examining variation in quality of EOL care and new quality measures allow us to examine the role of access to care, patient/family interactions with the healthcare system, and stress in explaining variation in quality of EOL care among children with cancer. We will leverage Children’s Oncology Group (COG) 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 access to care will include psychosocial support, household material hardship, and area information, and receive care; patient-healthcare interaction will include language, medical literacy, and area characteristics, and stress will include resilience and area characteristics. These variables will be collected via EHR abstraction at COG sites, bereaved parent surveys, and residential address linkages to information about the area they live, work, and receive care. We will use these data to examine the role of access to care, patient/family interactions with the healthcare system, and stress in variation in quality of EOL care. Lastly, we will deepen our understanding of how those domains affect quality of EOL care and potential interventions through semi-structured interviews with bereaved parents with high- and low-quality care. Using a mixed methods approach, we will address the following Aims: Aim 1: Examine the role of access to care, patient/family healthcare interactions, and stress in variation in quality of EOL care. Aim 2: Develop and validate a prediction model to identify children at high risk of receiving poor quality EOL care. Aim 3: Explore how access to care, patient/family healthcare interactions, and stress influence quality of care and potential interventions to overcome these barriers. Upon completion of this proposal, we will have critical data about the role of access to care, patient/family interactions with the healthcare system, and stress in explaining variations in quality of EOL care, a model to identify those at risk of low quality EOL care, and recommendations for potential interventions. This work will inform development of risk-based interventions to ensure all children with cancer have high quality EOL care.