Considerable advancements in cancer screening, diagnosis, treatment, and survivorship care have led to improved outcomes for millions of people with cancer. Unfortunately, equity in the benefits of these improvements has not been realized for many patient groups, and barriers to disparities research and the goal of health and healthcare equity continue to grow. This Special Collection is comprised of cutting-edge cancer disparities research focusing on a number of community, patient, and caregiver groups, which utilizes various research designs and methodologies. The articles included demonstrate the sustained focus of scholars devoted to mitigating disparities, the continued need for disparities research at all phases of the cancer care continuum using a variety of research designs and methodologies, and the importance of stakeholder and community engagement. This Special Collection is evidence of the essential role disparities research plays in cancer care and the persistence of disparities-focused scholars.
Introduction
Research which examines, identifies, and strives to mitigate disparities in all aspects of cancer care is essential to continuous improvement of the quality of cancer care. In fact, disparities in cancer care are predictably observed in many patient groups, including disparities by race and ethnicity, age, sexual orientation and gender identity, and the neighborhood and built environment where an individual lives.1-7 Although progress has been made with respect to some of these groups, considerably more work and research must be done at the individual, relational, clinic, hospital/cancer center, insurance, and policy levels across groups.
Unfortunately, the barriers to this research are growing exponentially in the form of mounting opposition to research devoted to disparities and equity, attacks on individual investigators and faculty members, and the termination of congressionally approved grants supporting this work. Despite this, cancer researchers and providers remain resolute in our goals to preserve the hard-fought ground we have gained and persevere toward health equity. This Special Collection includes high-impact research spanning the cancer continuum that is persisting with the goals of disparity mitigation and equity achievement. The science included here brings together innovation, community engagement, and scientific rigor to all phases of the cancer continuum and is clear evidence that the scientific community remains committed to creating the knowledge essential to addressing persisting disparities.
This Editorial serves as an introduction to the Special Collection, highlighting the broad scope of science that was submitted to it. The included papers were not pre-selected or invited; instead, they are the result of a general call for papers on the topic organized by Cancer Control. In this Editorial, the 16 included papers are briefly summarized and organized to showcase representation of disparities science across the cancer continuum. This includes papers focused on prevention and risk, screening, post diagnosis and treatment, and survivorship, and papers exploring systems-level issues and policy. Across the papers, a variety of methodologies were utilized, including community-engagement, systematic review, cross-sectional analysis, intervention development and testing, secondary analyses, qualitative methods, mixed-method designs, and machine learning and automated methods, demonstrating the breadth of research included in the collection.
Prevention and Risk
Schick and colleagues report on a community-based approach to Hepatitis B and C prevention and treatment through housing and service centers in Optimizing Community-Based Hepatitis B and C Care for Engaging Housing-Insecure.
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They found high uptake of vaccination and treatment in high-risk housing insecure individuals, providing evidence of effectively reaching a high-need community through housing and service centers.
Motivated by the great need to expand racial and ethnic representation in genome-wide association and clinical genomics, Geary et al. describe the challenges to this expansion in Equity and Inclusion in Assessing Hereditary Cancer Risk: Insights from Excluded Communities, Structured Interviews, and Population Genetics.
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Using empirical data from population databases, they demonstrate major gaps in hereditary cancer gene variant representation. This is supplemented by their own qualitative data from interviews with experts in genetic testing and data sharing, which suggest ways to create inclusive hereditary cancer data resources.
In their cross-sectional cohort study, Association of State and Local Social and Public Health Spending with Cancer Incidence and Mortality,
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Newton and colleagues characterized the association between state and local social spending and incidence and mortality of poverty-associated cancers. They found that combined state and local social spending was associated with lower cancer incidence and mortality rates, providing important evidential support for spending interventions addressing general welfare and, by extension, cancer risk and outcomes.
Shi et al. sought to provide a comprehensive cancer risk profile associated with lifestyle factors in predominantly low-income Americans in Association of Cigarette Smoking and Alcohol Drinking With Risk of 12 Common Cancers Among Low-Income American Adults in the Southeastern United States.
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In their prospective analysis, they found that cigarette smoking and alcohol drinking were associated with an increased risk of multiple cancers including lung, liver and bile duct, kidney, and pancreas, among others. These findings highlight the need for interventions targeting cigarette and alcohol consumption for cancer prevention in low-income U.S. populations.
Screening
Cartwright and colleagues evaluated a community-engaged and culturally tailored intervention to improve knowledge, attitudes, and screening behaviors in Closing the Cancer Screening Gap: Evaluation of a Mixed Methods, Community-Based, Cognitive-Behavioral Education Intervention in the Zuni Pueblo.
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Using a mixed-methods design, they found that a cognitive-behavioral education intervention led to improvements in cancer-related attitudes, beliefs, and screening behaviors for younger and older participants and men and women. The qualitative data echo previous research which shows that community-engagement and cultural tailoring add important value by enhancing intervention effectiveness.
Aktary and colleagues expanded the understanding of colorectal screening in Métis people, an under-served population based in Canada, in Colorectal Cancer Screening among Métis and Non-Métis Males and Females in Alberta, Canada.
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They found that CRC screening participation rates among Métis males and females remained slightly higher than, or similar to, their non-Métis counterparts. However, retention rates among Métis people were lower compared to non-Métis people. Their findings show the need for continued collaboration among Indigenous leaders, researchers and healthcare providers in this population.
In their paper, Evaluating a Prostate Cancer Education and Navigation to Screening Program for Black Men in South Carolina, US,
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Ford et al. provide evidence supporting the use of a one-hour, evidence-based prostate cancer educational session (SC Prostate Cancer Education and Navigation to Screening Program for African American Men (SC AMEN Program)). SC AMEN sessions were held at trusted community venues and the majority of participants completed or had a prostate cancer screening scheduled as a result of their participation.
Post Diagnosis and Treatment
In How am I Going to Live? How am I going to Pay Rent? A Mixed Methods Investigation of Employment, Stigma, and Financial Hardship Among LGBTQ+ Cancer Caregivers,
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Waters and colleagues assess the impact of caregiving-related employment changes and anti-LGBTQ+ stigma on financial hardship among LGBTQ+ cancer caregivers. Utilizing a mixed-methods design, the authors provide evidence of the considerable hardship LGBTQ+ cancer caregivers face, providing a foundation for tailored interventions for this population.
Akkala and colleagues conducted a systematic review in their paper Socioeconomic Status and Breast Cancer Treatment in the United States: Results From a Systematic Literature Review.
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Twenty-three studies were included in the review and showed that socioeconomic status (SES) significantly influenced breast cancer care and survival, with lower SES associated with delayed treatment, poorer adherence, and worse outcomes. These findings show the great need for support and interventions specifically for low SES women.
Edward and colleagues provide a comprehensive assessment of disparities across patient race, rurality, and age in Racial and Rural Disparities in Financial Toxicity and Healthcare Transitions Among Adolescent and Young Adult Cancer Survivors in Kentucky: A Cross-Sectional Study.
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Overall, they found moderate levels of financial toxicity, with strong associations between financial toxicity and anxiety, depression, and long-term effects of cancer treatment. Black participants showed higher levels of anxiety and coping behaviors compared to White patients. Urban participants experienced lower financial toxicity than their rural counterparts. These data provide a foundation for tailored strategies for underserved cancer survivors.
Eaglehouse et al. assessed disparities in surgery and outcomes in Racial-Ethnic Comparisons in Surgical Treatment and Outcomes of Non-Metastatic Renal Cell Cancer (RCC) in an Equal Access Health System.
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With the benefit of a US Military Health Systems (MHS) cohort of patients diagnosed with RCC, they found that in the equal access MHS, there were some significant variations in treatment between racial-ethnic groups. Despite observed lower surgery rates among non-Hispanic Black patients, the risk of recurrence or survival was lower or equal as compared to non-Hispanic White patients.
Hamel and colleagues conducted a secondary analysis of video-recorded cancer treatment discussions between Black patients and their medical oncologists and patient and provider race-based attitudes (e.g., patient suspicion, physician implicit bias). In The Influence of Patient and Physician Race-Related Attitudes and Perceptions on Nonverbal Synchrony in Oncology Treatment Interactions Between Black Patients and Non-Black Physicians,
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the investigative team applied automated behavioral coding software to the video-recorded treatment discussions and found positive relationships between physicians’ implicit racial bias and synchronized nonverbal behavior between physicians and patients, adding to the growing literature on how implicit racial bias influences clinical communication, behavior, and associated outcomes.
Ma et al. explore the comorbidity patterns of early-onset liver cancer (EOLC) and developed a race/ethnicity-specific machine learning (ML) model to predict liver cancer risk in Racial Disparities in Comorbidity Patterns of Early-Onset Liver Cancer: A Machine Learning Analysis.
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They found that Asian and Pacific Islanders (API) had significantly higher rates of Hepatitis B virus (HBV) infection, while Hispanic people had higher prevalences of cirrhosis, hypertension, diabetes, and Hepatitis C virus (HCV) infection. Race/ethnicity-specific models for API and Hispanic people outperformed the model for White people, demonstrating the potential of ML models to identify high-risk populations and inform targeted prevention strategies.
Survivorship
In their paper, Survivorship Care After Childhood Cancer: A Systematic Review of Reported Barriers and Facilitators,
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Mobley and colleagues conducted a systematic review of the empirical evidence of barriers to and facilitators of survivorship care for childhood cancer survivors. Across the 49 studies included in the review, the authors identified influential barriers to survivorship care (e.g., lack of knowledge, active avoidance, lack of trust), gaps in infrastructure (e.g., financial toxicity/hardship, lack of insurance coverage), but also facilitators of survivorship care (e.g., knowledge, prioritization). Younger patients/survivors often face a unique set of challenges, and these data provide an important platform on which to build much needed interventional work.
Zebrack and colleagues provide an in-depth description of the role of social work in cancer care in The Essential Nature of Social Work in Cancer Control.
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The authors argue and provide evidence of the unique expertise social workers possess, including identifying social needs and improving patient outcomes in cancer care. Furthermore, they describe how social workers organize communities, intervene upon social systems, and provide advocacy for cancer patients and their families and communities.
Benitez-Fuentes and colleagues reexamine the Alma Ata Declaration principles of health equity, universal access, preventative care, and community participation in Revisiting Alma Ata: A Blueprint for Cancer Care.
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Through their updated assessment, the authors describe how these principles can provide a scalable model to advance equitable, accessible, and sustainable global care for contemporary oncology. They provide evidence-based groundwork for research and to inform policy development.
Final Thought
This Special Collection is comprised of scientific pursuits designed to mitigate cancer disparities as we work to achieve equity in cancer care. As a collection, these papers demonstrate the multi-prong strategy that is necessary to realize these goals. Specifically, work is needed at all phases of the cancer care continuum, working closely with community and patient groups at great risk for experiencing disparities, and utilizing a variety of scientific designs and methods.
This Special Collection covers a broad range of topics, but it is also useful to examine what work is lacking. Priorities for future research could include screening for certain cancers, including breast and lung cancers. Interventional work should be prioritized as we seek to build upon the copious amount of work devoted to describing cancer-related disparities and the communities affected. Similarly, descriptive work can serve to support critical policies at the local, state, and federal level. The work reported in this Special Collection, and similar data, offer a critical evidence base on which to design impactful policies focused on disparities mitigation for all areas of health and healthcare.
More generally, this work is evidence that devoted scholars are persisting and increasing their efforts in an area that has growing and determined opposition to its progress. The scientific and health value of this research remains unquestionably clear, and, importantly, investigators that conduct this work are critical voices for patient groups who, by virtue of our social structures, may have their voices quieted.
