Children of color are systematically disadvantaged by our health care system. Across pediatric diagnoses, Black children are more likely to be hospitalized, experience severe illness complications, and die.1–9 The American Academy of Pediatrics identifies racism as a key driver of health inequities.10,11 Addressing structural racism, “the structures, policies, practices, and norms resulting in differential access to the goods, services, and opportunities of society by race,”12 requires understanding and targeting the mechanisms through which it perpetuates disparities.
Pediatric subspecialties are uniquely positioned to leverage the infrastructures of multicenter, national research collaboratives (eg, Children’s Oncology Group, Children’s Hospitals Neonatal Consortium, Pediatric Emergency Care Applied Research Network, and Pediatric Acute Lung Injury and Sepsis Investigators) to systematically identify areas for intervention. Hereafter, we use pediatric oncology as a paradigmatic population to describe 3 pathways13 through which structural racism leads to inferior outcomes: access to care, patient/family interaction with the health care system, and toxic stress. By distilling structural racism into pathways amenable to mechanistic investigations and health care delivery intervention evaluation, we provide a concrete framework to advance health equity.
Access to Care
Structural racism impacts where patients and families of color live and their socioeconomic status,14 determining when, where, and how families access care.
Black and Hispanic families of children with cancer are more likely to experience household material hardship (HMH),15 including food, utility, and housing insecurities that force trade-offs between basic needs and medical care. Black and Hispanic families are more likely to have public insurance, which impedes timely access to subspecialists and diagnostic evaluation,16 placing children at risk for advanced disease at diagnosis.7,17–21 Black, Hispanic and publicly insured children are less likely to receive novel therapies, such as clinical trials22,23 or proton radiation therapy,23,24 or to receive care at National Cancer Institute-designated cancer centers, Children’s Oncology Group centers, and high-volume centers, which have superior outcomes.25,26
Patient and Family Interaction With the Health Care System
When patients and families of color access the health care system, structural racism disadvantages their experiences, acting through education, language, and health literacy to contribute to poor outcomes.27–30
Low parental health literacy and limited English proficiency are associated with increased risks of medical errors,28 adverse events,29 and death in Hispanic children.31 These risks are magnified for children with cancer, who have prolonged hospitalizations and complex medication schedules. Black and Hispanic children with leukemia have lower oral chemotherapy adherence rates, in part explained by a higher likelihood of living in households with single parents or lower maternal education.32–34
Navigating a complex health system while experiencing institutionalized racism drives untrustworthiness and contributes to poorer quality care. Black and Hispanic patients are more likely to report distrust,35 and clinicians contribute to untrustworthiness through implicit and explicit biases.36,37 Pediatric oncologists underestimate the information needs of families of color, which may hinder communication and prognostic understanding.38,39
Toxic Stress
Structural racism contributes to disparate outcomes through toxic stress, the mechanism by which severe and prolonged adverse childhood experiences lead to physiological changes that impact future physical and psychological morbidity.40 Black and Hispanic children have higher rates of early childhood adversity due to systemic social, economic, and legal injustices.41 Chronic childhood adversity is associated with inferior neonatal, neurocognitive, and cardiovascular outcomes.42–47 Given that 80% of children with cancer will be long-term survivors48 with neurocognitive and cardiovascular late effects affecting nearly half,49 investigating the intersection between toxic stress and childhood cancer may have implications for long-term organ surveillance and risk-adapted therapies to reduce morbidity.
Recommendations
Pediatric oncology, similarly to other pediatric subspecialties, represents an ideal setting to systematically study inequities due to (1) preexisting multicenter research infrastructures, (2) standardized clinical trial models of care delivery, and (3) frequent and predictable health care utilization, providing opportunities to explicitly evaluate care delivery, trial design, and outcomes through a structural racism framework. We recommend leveraging these strengths to achieve the following:
Adopt universal and systematic social determinants of health (SDOH) screening in subspecialty medical homes.50,51 Multiple evidence-based SDOH screening tools exist to evaluate financial strain, HMH, social support, literacy, education, and interpersonal violence.52 These screens include multidimensional measures of poverty, which is a key pathway through which structural racism impacts access to care, including insurance, income, HMH, and zip code (used to measure neighborhood-level poverty and rurality). Integrating SDOH screens into national pediatric oncology protocols is feasible and acceptable to parents.53
Incorporate prospectively collected SDOH data to identify mechanisms driving disparities and opportunities for intervention. Implementing systematic SDOH screening enables mechanistic investigations of race-associated disparities. For example, are racial disparities in access to clinical trials driven by the location of care, insurance status, transportation insecurity, limited English proficiency, or parental education/literacy? A trial-embedded SDOH investigation in pediatric oncology (clinicaltrials.gov ID NCT03126916) is identifying specific SDOH targets for health equity interventions in future trials.
Conduct a focused investigation of the impact of toxic stress on disease outcomes. Data linking childhood adversity with brain development and cardiovascular disease42,43,47 and maternal adversity and preterm birth outcomes44 reveal the impact of toxic stress on subspecialty outcome disparities. Systematic SDOH annotation of blood and tissue samples will facilitate the investigation of stress-related epigenetic, metabolomic, and microenvironmental changes contributing to disease incidence, treatment response, and outcomes. Trial-embedded SDOH investigations, including prospective collaboration between health equity and basic science investigators in pediatric oncology, are investigating toxic stress-associated treatment resistance and neurocognitive late effects (clinicaltrials.gov IDs NCT 03020030 and NCT03914625).
Develop multilevel health equity interventions focused on pathways in our framework. Efforts should include the intentional cultivation of multidisciplinary research teams, including patients, families, psychologists, nurse scientists, social workers, interpreters, and community stakeholders (religious and community-based leaders).
Access to care: Interventions targeting this pathway should focus on ameliorating barriers to accessing care. Existing interventions include systematic referral to community-based resources,50 direct provision of material resources to mitigate HMH,54 and community health worker partnerships51,55 that can be refined for scalability across subspecialties and incorporated into multicenter trials.
Patient-health-care-system interaction: Interventions in this pathway should focus on reducing bias, interpersonal discrimination, and language- and literacy-related barriers to care. Health navigators56 and health literacy toolkits57 target mechanisms along this pathway. Community-based participatory research58 or partnering with patient and family advocates from racially marginalized populations can inform intervention development.
Toxic stress: While investigating the physiological mechanisms through which stress impacts disease outcomes will be key to identifying targets for preventative and risk-adaptive therapies, enhancing family resilience may buffer the effects of toxic stress. The Promoting Resilience in Stress Management intervention has improved patient and parent psychosocial outcomes in cancer, type 1 diabetes, and cystic fibrosis with sustained results over time.59–62 Next steps should include an investigation of the role of such evidence-based psychosocial interventions targeting parental resilience in mitigating toxic stress.
Evaluate and refine interventions for precise impact, sustainability, and systemic change63 and disseminate findings.64 Multiinstitution collaborations within pediatric subspecialty groups can evaluate health equity interventions and disseminate successful interventions.
Conclusion
Through the example of pediatric oncology, we demonstrate how a structural racism framework can be implemented utilizing a preexisting research infrastructure to advance health equity. This framework and recommendations are readily applicable to other pediatric subspecialty groups. By cultivating a systematic focus on structural racism, pediatric subspecialists have an unprecedented opportunity to improve the care of historically marginalized children with serious illnesses and achieve equitable outcomes.
FUNDING: No external funding. Dr Bona is supported by NIH award K07CA211847.
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest to disclose.
Dr Umaretiya conceptualized the framework and drafted and revised the manuscript; Drs Vinci and Bona reviewed and revised the framework and manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
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