Unpacking Structural Racism in Quality of End-of-Life Care for Children with Cancer
Project Number1R37CA296615-01
Former Number1R01CA296615-01
Contact PI/Project LeaderJOHNSTON, EMILY ELIZABETH
Awardee OrganizationUNIVERSITY OF ALABAMA AT BIRMINGHAM
Description
Abstract Text
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.
Public Health Relevance Statement
PROJECT NARRATIVE
In this proposal, we will examine the role of structural racism in racial and ethnic disparities in quality of end-of-
life care among children with cancer. Structural racism affects all aspects of health in the United States; better
understanding the role of structural racism in disparities in end-of-life care for children with cancer will not only
improve care for children with cancer but can also shed light on how structural racism shapes care in other
areas. Further, cancer is the leading cause of disease-related death among US children, making improving
quality of end-of-life care for children with cancer a critical part of public health.
NIH Spending Category
No NIH Spending Category available.
Project Terms
AddressAffectAreaBlack raceCaregiversCaringCessation of lifeCharacteristicsChildChild CareChildhoodClinicalCommunitiesCommunity Clinical Oncology ProgramDataData CollectionDevelopmentDiagnosisDiscriminationDiseaseDisparityEducationElectronic Health RecordEnrollmentFamilyFamily health statusFeelingFutureHealthHealth CareHealth Care SystemsHealth Services AccessibilityHearingHispanicHouseholdInequityInterventionInterviewIntubationLanguageLocationMalignant Childhood NeoplasmMalignant NeoplasmsMeasuresMechanical ventilationMedicalMethodsMinorityModelingNeighborhoodsNot Hispanic or LatinoPainPalliative CareParentsPatientsPediatric OncologyPediatric Oncology GroupPersonsPlayPoliciesProviderPsychosocial Assessment and CarePublic HealthQuality of CareQuality of lifeRaceRecommendationRegistriesReportingResearchResourcesRiskRoleServicesShapesSiteSocietiesSocioeconomic StatusStressStructural RacismStructureSupportive careSurveysTestingTimeUnited StatesValidationVulnerable PopulationsWorkcancer carecare systemscohortcomplex chronic conditionsdisparity reductionend of lifeend of life careethnic disparityethnic diversityexperiencehealth care availabilityhealth literacyhigh riskimprovedliteracypredictive modelingprognosticprogramsracial disparityracial diversityresilienceresponse
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