Annunziata CM, Dahut WL, Willman CL
… +2 more, Winn RA, Knudsen KE
J Natl Cancer Inst Monogr
· 2024 Jun · PMID 38924793
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Telemedicine has routinely been used in cancer care delivery for the past 3 years. The current state of digital health provides convenience and efficiency for both health-care professional and patient, but challenges exi...Telemedicine has routinely been used in cancer care delivery for the past 3 years. The current state of digital health provides convenience and efficiency for both health-care professional and patient, but challenges exist in equitable access to virtual services. As increasingly newer technologies are added to telehealth platforms, it is essential to eliminate barriers to access through technical, procedural, and legislative improvements. Moving forward, implementation of new strategies can help eliminate disparities in virtual cancer care, facilitate delivery of treatment in the home, and improve real-time data collection for patient safety and clinical trial participation. The ultimate goal will be to extend high-quality survival for all patients with cancer through improved digital delivery of cancer care.
J Natl Cancer Inst Monogr
· 2024 Jun · PMID 38924792
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Modern cancer care is costly and logistically burdensome for patients and their families despite an expansion of technology and medical advances that create the opportunity for novel approaches to care. Therefore, there...Modern cancer care is costly and logistically burdensome for patients and their families despite an expansion of technology and medical advances that create the opportunity for novel approaches to care. Therefore, there is a growing appreciation for the need to leverage these innovations to make cancer care more patient centered and convenient. The Memorial Sloan Kettering Making Telehealth Delivery of Cancer Care at Home Efficient and Safe Telehealth Research Center is a National Cancer Institute-designated and funded Telehealth Research Center of Excellence poised to generate the evidence necessary to inform the appropriate use of telehealth as a strategy to improve access to cancer services that are convenient for patients. The center will evaluate telehealth as a strategy to personalize cancer care delivery to ensure that it is not only safe and effective but also convenient and efficient. In this article, we outline this new center's research strategy, as well as highlight challenges that exist in further integrating telehealth into standard oncology practice based on early experiences.
J Natl Cancer Inst Monogr
· 2024 Jun · PMID 38924791
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BACKGROUND: Telehealth use increased during the COVID-19 pandemic and remains a complementary source of cancer care delivery. Understanding research funding trends in cancer-related telehealth can highlight developments...BACKGROUND: Telehealth use increased during the COVID-19 pandemic and remains a complementary source of cancer care delivery. Understanding research funding trends in cancer-related telehealth can highlight developments in this area of science and identify future opportunities. METHODS: Applications funded by the US National Cancer Institute (NCI) between fiscal years 2016 and 2022 and focused on synchronous patient-provider telehealth were analyzed for grant characteristics (eg, funding mechanism), cancer focus (eg, cancer type), and study features (eg, type of telehealth service). Of 106 grants identified initially, 60 were retained for coding after applying exclusion criteria. RESULTS: Almost three-quarters (73%) of telehealth grants were funded during fiscal years 2020-2022. Approximately 67% were funded through R01 or R37 mechanism and implemented as randomized controlled trials (63%). Overall, telehealth grants commonly focused on treatment (30%) and survivorship (43%); breast cancer (12%), hematologic malignancies (10%), and multiple cancer sites (27%); and health disparity populations (ie, minorities, rural residents) (73%). Both audio and video telehealth were common (65%), as well as accompanying mHealth apps (20%). Telehealth services centered on psychosocial care, self-management, and supportive care (88%); interventions were commonly delivered by mental health professionals (30%). CONCLUSION: NCI has observed an increase in funded synchronous patient-provider telehealth grants. Trends indicate an evolution of awards that have expanded across the cancer control continuum, applied rigorous study designs, incorporated additional digital technologies, and focused on populations recognized for disparate cancer outcomes. As telehealth is integrated into routine cancer care delivery, additional research evidence will be needed to inform clinical practice.
Rendle KA, Tan ASL, Spring B
… +15 more, Bange EM, Lipitz-Snyderman A, Morris MJ, Makarov DV, Daly R, Garcia SF, Hitsman B, Ogedegbe O, Phillips S, Sherman SE, Stetson PD, Vachani A, Wainwright JV, Zullig LL, Bekelman JE
J Natl Cancer Inst Monogr
· 2024 Jun · PMID 38924790
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The COVID-19 pandemic placed a spotlight on the potential to dramatically increase the use of telehealth across the cancer care continuum, but whether and how telehealth can be implemented in practice in ways that reduce...The COVID-19 pandemic placed a spotlight on the potential to dramatically increase the use of telehealth across the cancer care continuum, but whether and how telehealth can be implemented in practice in ways that reduce, rather than exacerbate, inequities are largely unknown. To help fill this critical gap in research and practice, we developed the Framework for Integrating Telehealth Equitably (FITE), a process and evaluation model designed to help guide equitable integration of telehealth into practice. In this manuscript, we present FITE and showcase how investigators across the National Cancer Institute's Telehealth Research Centers of Excellence are applying the framework in different ways to advance digital and health equity. By highlighting multilevel determinants of digital equity that span further than access alone, FITE highlights the complex and differential ways structural determinants restrict or enable digital equity at the individual and community level. As such, achieving digital equity will require strategies designed to not only support individual behavior but also change the broader context to ensure all patients and communities have the choice, opportunity, and resources to use telehealth across the cancer care continuum.
Zullig LL, Makarov D, Becker D
… +9 more, Dardashti N, Guzman I, Kelley MJ, Melnic I, Juarez Padilla J, Rojas S, Thomas J, Tumminello C, Sherman SE
J Natl Cancer Inst Monogr
· 2024 Jun · PMID 38924789
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BACKGROUND: In recent years the US health-care system has witnessed a substantial increase in telehealth use. Telehealth enhances health-care access and quality and may reduce costs. However, there is a concern that the...BACKGROUND: In recent years the US health-care system has witnessed a substantial increase in telehealth use. Telehealth enhances health-care access and quality and may reduce costs. However, there is a concern that the shift from in-person to telehealth care delivery may differentially improve cancer care access and quality in certain clinical settings and for specific patient populations while potentially exacerbating disparities in care for others. Our National Cancer Institute-funded center, called Telehealth Research and Innovation for Veterans with Cancer (THRIVE), is focused on health equity for telehealth-delivered cancer care. We seek to understand how social determinants of telehealth-particularly race and ethnicity, poverty, and rurality-affect the use of telehealth. METHODS: THRIVE draws from the Health Disparities Research Framework and the Consolidated Framework for Implementation Research. THRIVE consists of multiple cores that work synergistically to assess and understand health equity for telehealth-delivered cancer care. These include the Administrative Core, Research and Methods Core, Clinical Practice Network, and Pragmatic Trial. RESULTS: As of October 2023, we identified and trained 5 THRIVE scholars, who are junior faculty beginning a research career. We have reviewed 20 potential pilot studies, funding 6. Additionally, in communication with our funders and advisory boards, we have adjusted our study design and analytic approach, ensuring feasibility while addressing our operational partners' needs. CONCLUSIONS: THRIVE has several key strengths. First, the Veterans Health Administration's health-care system is large and diverse regarding health-care setting type and patient population. Second, we have access to longitudinal data, predating the COVID-19 pandemic, about telehealth use. Finally, equitable access to high-quality care for all veterans is a major tenet of the Veterans Health Administration health-care mission. As a result of these advantages, THRIVE can focus on isolating and evaluating the impact of social determinants of telehealth on equity in cancer care.
J Natl Cancer Inst Monogr
· 2024 Jun · PMID 38836530
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Stigma is a social process characterized by negative beliefs, attitudes, and stereotypes associated with a specific attribute or characteristic that leads to discrimination and social exclusion. Stigma manifests across t...Stigma is a social process characterized by negative beliefs, attitudes, and stereotypes associated with a specific attribute or characteristic that leads to discrimination and social exclusion. Stigma manifests across the cancer control continuum and remains a key challenge for cancer prevention and control worldwide. In this commentary, we provide an overview of the U.S. National Cancer Institute's (NCI) Global Cancer Stigma Research Workshop, a multi-disciplinary international conference held virtually in September 2022, which focused on the intersection of cancer and stigma. The meeting was unique in its convening of researchers, advocates, clinicians, and non-governmental and governmental organizations, who-as a collective-provided overarching topics, cross-cutting considerations, and future directions for the cancer stigma research community to consider, which we describe herein. In summary, studying cancer stigma comprehensively requires a holistic, adaptive, and multifaceted approach-and should consider interrelated factors and their intersection within diverse cultural and social contexts worldwide. Collectively, there was a call for: an inclusive approach, encouraging researchers and practitioners to identify and measure cancer stigma as a driver for cancer health inequities globally; an expansion of existing research methodology to include diversity of experiences, contexts, and perspectives; and collaborations among diverse stakeholders to develop more effective strategies for reducing stigma and improving cancer outcomes. Such efforts are essential to cultivating effective and equitable approaches to preventing and treating cancer worldwide.
Collier SM, Semeere A, Chemtai L
… +16 more, Byakwaga H, Lagat C, Laker-Oketta M, Bramante J, Pacheco A, Zehtab M, Strahan AG, Grant M, Bogart LM, Bassett IV, Busakhala N, Opakas J, Maurer T, Martin J, Kiprono S, Freeman EE
J Natl Cancer Inst Monogr
· 2024 Jun · PMID 38836529
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Persons with HIV-associated Kaposi's sarcoma (KS) experience three co-existing stigmatizing health conditions: skin disease, HIV, and cancer, which contribute to a complex experience of stigmatization and to delays in di...Persons with HIV-associated Kaposi's sarcoma (KS) experience three co-existing stigmatizing health conditions: skin disease, HIV, and cancer, which contribute to a complex experience of stigmatization and to delays in diagnosis and treatment. Despite the importance of stigma among these patients, there are few proven stigma-reduction strategies for HIV-associated malignancies. Using qualitative methods, we explore how people with HIV-associated KS in western Kenya between August 2022 and 2023 describe changes in their stigma experience after participation in a multicomponent navigation strategy, which included 1) physical navigation and care coordination, 2) video-based education with motivational survivor stories, 3) travel stipend, 4) health insurance enrollment assistance, 5) health insurance stipend, and 6) peer mentorship. A purposive sample of persons at different stages of chemotherapy treatment were invited to participate. Participants described how a multicomponent navigation strategy contributed to increased knowledge and awareness, a sense of belonging, hope to survive, encouragement, and social support, which served as stigma mitigators, likely counteracting the major drivers of intersectional stigma in HIV-associated KS.
J Natl Cancer Inst Monogr
· 2024 Jun · PMID 38836528
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Effective communication about cancer diagnosis and prognosis in sub-Saharan African oncology settings is often challenged by the cancer-related shame and stigma patients and families experience. Enhancing empathic commun...Effective communication about cancer diagnosis and prognosis in sub-Saharan African oncology settings is often challenged by the cancer-related shame and stigma patients and families experience. Enhancing empathic communication between health care providers, including physicians and nurses, and oncology patients and their families can not only reduce cancer stigma but also improve patient engagement, treatment satisfaction, and quality of life. To reduce lung cancer stigma, we adapted an evidence-based empathic communication skills training intervention to reduce patients' experience of stigma in Nigeria and conducted a pilot study examining the feasibility and acceptability of the empathic communication skills training. Thirty health care providers, recruited from University College Hospital, Ibadan, and Obafemi Awolowo University Teaching Hospitals Complex, Ile-Ife, participated in a 2.25-hour didactic and experiential training session. Participant surveys were completed before and after the training. Overall, participants reported highly favorable training evaluations, with at least 85% of health care providers agreeing or strongly agreeing to survey items assessing training relevance, novelty, clarity, and facilitator effectiveness. Self-efficacy to communicate empathically with patients increased significantly from before-training (Mean [SD] = 3.93 [0.28]) to after-training (Mean [SD] = 4.55 [0.15]; t29 = 3.51, P < .05). Significant improvements were observed in health care provider reports of empathy toward lung cancer survivors and attitude toward lung cancer care as well as significant reductions in lung cancer blame were noted. The empathic communication skills training was feasible, well received by oncology clinicians in Nigeria, and demonstrated improvements in health care provider-reported outcomes from before- to after-training.
Studts JL, Deffendall CM, McCubbin SL
… +4 more, Hamann HA, Hoover K, Brymwitt WM, Williamson TJ
J Natl Cancer Inst Monogr
· 2024 Jun · PMID 38836527
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BACKGROUND: Innovations in lung cancer control and care have started to transform the landscape of lung cancer outcomes, but lung cancer stigma and biases have been implicated as a deterrent to realizing the promise of t...BACKGROUND: Innovations in lung cancer control and care have started to transform the landscape of lung cancer outcomes, but lung cancer stigma and biases have been implicated as a deterrent to realizing the promise of these innovations. Research has documented lung cancer stigma among the general public and lung cancer survivors (self-blame), as well as clinicians across many disciplines. However, studies have not explored lung cancer stigma in health-care trainees. These data seek to address that gap and inform efforts to prevent the emergence or mitigate the presence of lung cancer stigma among future clinicians. METHODS: Using clinical vignettes and a 2x2 factorial design, this investigation evaluated the impact of a history of smoking (yes vs no) and cancer diagnosis (lung vs colorectal) on perceptions of the described patient among 2 groups of preclinical health-care trainees (medical = 94 and nursing = 138). A charitable giving paradigm also asked participants to donate provided funds to 1 of 2 cancer advocacy organizations: one serving the lung cancer community and one serving the colorectal cancer community. RESULTS: In study 1, results revealed a consistent pattern of statistically significant and medium to large effect size differences regarding stigmatized perceptions (eg, higher stigmatizing behavior, increased pity, greater anger, and less helping) for individuals with a history of smoking but no reliable differences regarding cancer diagnosis. Analysis of data from nursing trainees in study 2 showed a similar pattern of statistically significant and medium to large effects pertaining to stigma behavior and perceptions of individuals who had a history of smoking depicted in the vignettes. The charitable giving paradigm did not identify any reliable difference between the groups in either study. CONCLUSIONS: Findings revealed a consistent pattern of health-care trainee perceptions that varied by smoking status but much less evidence that the cancer diagnosis contributed to different perceptions. This suggests that efforts to integrate consideration of stigma and biases in health-care training needs to adopt an approach that seeks to mitigate or eliminate stigmatizing perceptions and behaviors toward individuals with a history of smoking.
J Natl Cancer Inst Monogr
· 2024 Jun · PMID 38836525
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Cancer is a stigmatized disease in many countries that impacts the quality of life and mental health of people affected by cancer. This commentary examines some dimensions of cancer stigma and has been developed based on...Cancer is a stigmatized disease in many countries that impacts the quality of life and mental health of people affected by cancer. This commentary examines some dimensions of cancer stigma and has been developed based on insights from participants in a Union for International Cancer Control program dedicated to cancer patient organizations in low- and middle-income countries. Aimed at program managers and policy makers, this commentary highlights the importance of developing strategies to reduce cancer stigma in cancer control programs in different contexts, working closely with community-based civil society organizations and those with lived experience of cancer to understand, evaluate, and take action regarding the impact of cancer stigma on health-seeking behavior and patients' quality of life.
Eschliman EL, Hoang D, Khoshnam N
… +14 more, Ye V, Kokaze H, Ji Y, Zhong Y, Morumganti A, Xi W, Huang S, Choe K, Poku OB, Alvarez G, Nguyen T, Nguyen NT, Shelley D, Yang LH
J Natl Cancer Inst Monogr
· 2024 Jun · PMID 38836524
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BACKGROUND: Vietnam is experiencing a growing burden of cancer, including among people living with HIV. Stigma acts as a sociocultural barrier to the prevention and treatment of both conditions. This study investigates h...BACKGROUND: Vietnam is experiencing a growing burden of cancer, including among people living with HIV. Stigma acts as a sociocultural barrier to the prevention and treatment of both conditions. This study investigates how cultural notions of "respected personhood" (or "what matters most") influence manifestations of HIV-related stigma and cancer stigma in Hanoi, Vietnam. METHODS: Thirty in-depth interviews were conducted with people living with HIV in Hanoi, Vietnam. Transcripts were thematically coded via a directed content analysis using the What Matters Most conceptual framework. Coding was done individually and discussed in pairs, and any discrepancies were reconciled in full-team meetings. RESULTS: Analyses elucidated that having chữ tín-a value reflecting social involvement, conscientiousness, and trustworthiness-and being successful (eg, in career, academics, or one's personal life) are characteristics of respected people in this local cultural context. Living with HIV and having cancer were seen as stigmatized and interfering with these values and capabilities. Intersectional stigma toward having both conditions was seen to interplay with these values in some ways that had distinctions compared with stigma toward either condition alone. Participants also articulated how cultural values like chữ tín are broadly protective against stigmatization and how getting treatment and maintaining employment can help individuals resist stigmatization's most acute impacts. CONCLUSIONS: HIV-related and cancer stigma each interfere with important cultural values and capabilities in Vietnam. Understanding these cultural manifestations of these stigmas separately and intersectionally can allow for greater ability to measure and respond to these stigmas through culturally tailored intervention.
J Natl Cancer Inst Monogr
· 2023 Nov · PMID 37947339
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Over the past 2 decades, population simulation modeling has evolved as an effective public health tool for surveillance of cancer trends and estimation of the impact of screening and treatment strategies on incidence and...Over the past 2 decades, population simulation modeling has evolved as an effective public health tool for surveillance of cancer trends and estimation of the impact of screening and treatment strategies on incidence and mortality, including documentation of persistent cancer inequities. The goal of this research was to provide a framework to support the next generation of cancer population simulation models to identify leverage points in the cancer control continuum to accelerate achievement of equity in cancer care for minoritized populations. In our framework, systemic racism is conceptualized as the root cause of inequity and an upstream influence acting on subsequent downstream events, which ultimately exert physiological effects on cancer incidence and mortality and competing comorbidities. To date, most simulation models investigating racial inequity have used individual-level race variables. Individual-level race is a proxy for exposure to systemic racism, not a biological construct. However, single-level race variables are suboptimal proxies for the multilevel systems, policies, and practices that perpetuate inequity. We recommend that future models designed to capture relationships between systemic racism and cancer outcomes replace or extend single-level race variables with multilevel measures that capture structural, interpersonal, and internalized racism. Models should investigate actionable levers, such as changes in health care, education, and economic structures and policies to increase equity and reductions in health-care-based interpersonal racism. This integrated approach could support novel research approaches, make explicit the effects of different structures and policies, highlight data gaps in interactions between model components mirroring how factors act in the real world, inform how we collect data to model cancer equity, and generate results that could inform policy.
Rutter CM, Nascimento de Lima P, Maerzluft CE
… +2 more, May FP, Murphy CC
J Natl Cancer Inst Monogr
· 2023 Nov · PMID 37947338
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The US Black population has higher colorectal cancer (CRC) incidence rates and worse CRC survival than the US White population, as well as historically lower rates of CRC screening. The Surveillance, Epidemiology, and En...The US Black population has higher colorectal cancer (CRC) incidence rates and worse CRC survival than the US White population, as well as historically lower rates of CRC screening. The Surveillance, Epidemiology, and End Results incidence rate data in people diagnosed between the ages of 20 and 45 years, before routine CRC screening is recommended, were analyzed to estimate temporal changes in CRC risk in Black and White populations. There was a rapid rise in rectal and distal colon cancer incidence in the White population but not the Black population, and little change in proximal colon cancer incidence for both groups. In 2014-2018, CRC incidence per 100 000 was 17.5 (95% confidence interval [CI] = 15.3 to 19.9) among Black individuals aged 40-44 years and 16.6 (95% CI = 15.6 to 17.6) among White individuals aged 40-44 years; 42.3% of CRCs diagnosed in Black patients were proximal colon cancer, and 41.1% of CRCs diagnosed in White patients were rectal cancer. Analyses used a race-specific microsimulation model to project screening benefits, based on life-years gained and lifetime reduction in CRC incidence, assuming these Black-White differences in CRC risk and location. The projected benefits of screening (via either colonoscopy or fecal immunochemical testing) were greater in the Black population, suggesting that observed Black-White differences in CRC incidence are not driven by differences in risk. Projected screening benefits were sensitive to survival assumptions made for Black populations. Building racial disparities in survival into the model reduced projected screening benefits, which can bias policy decisions.
Mandelblatt JS, Schechter CB, Stout NK
… +11 more, Huang H, Stein S, Hunter Chapman C, Trentham-Dietz A, Jayasekera J, Gangnon RE, Hampton JM, Abraham L, O'Meara ES, Sheppard VB, Lee SJ
J Natl Cancer Inst Monogr
· 2023 Nov · PMID 37947337
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BACKGROUND: Populations of African American or Black women have persistently higher breast cancer mortality than the overall US population, despite having slightly lower age-adjusted incidence. METHODS: Three Cancer Inte...BACKGROUND: Populations of African American or Black women have persistently higher breast cancer mortality than the overall US population, despite having slightly lower age-adjusted incidence. METHODS: Three Cancer Intervention and Surveillance Modeling Network simulation teams modeled cancer mortality disparities between Black female populations and the overall US population. Model inputs used racial group-specific data from clinical trials, national registries, nationally representative surveys, and observational studies. Analyses began with cancer mortality in the overall population and sequentially replaced parameters for Black populations to quantify the percentage of modeled breast cancer morality disparities attributable to differences in demographics, incidence, access to screening and treatment, and variation in tumor biology and response to therapy. RESULTS: Results were similar across the 3 models. In 2019, racial differences in incidence and competing mortality accounted for a net ‒1% of mortality disparities, while tumor subtype and stage distributions accounted for a mean of 20% (range across models = 13%-24%), and screening accounted for a mean of 3% (range = 3%-4%) of the modeled mortality disparities. Treatment parameters accounted for the majority of modeled mortality disparities: mean = 17% (range = 16%-19%) for treatment initiation and mean = 61% (range = 57%-63%) for real-world effectiveness. CONCLUSION: Our model results suggest that changes in policies that target improvements in treatment access could increase breast cancer equity. The findings also highlight that efforts must extend beyond policies targeting equity in treatment initiation to include high-quality treatment completion. This research will facilitate future modeling to test the effects of different specific policy changes on mortality disparities.
Jayasekera J, El Kefi S, Fernandez JR
… +20 more, Wojcik KM, Woo JMP, Ezeani A, Ish JL, Bhattacharya M, Ogunsina K, Chang CJ, Cohen CM, Ponce S, Kamil D, Zhang J, Le R, Ramanathan AL, Butera G, Chapman C, Grant SJ, Lewis-Thames MW, Dash C, Bethea TN, Forde AT
J Natl Cancer Inst Monogr
· 2023 Nov · PMID 37947336
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PURPOSE: Structural racism could contribute to racial and ethnic disparities in cancer mortality via its broad effects on housing, economic opportunities, and health care. However, there has been limited focus on incorpo...PURPOSE: Structural racism could contribute to racial and ethnic disparities in cancer mortality via its broad effects on housing, economic opportunities, and health care. However, there has been limited focus on incorporating structural racism into simulation models designed to identify practice and policy strategies to support health equity. We reviewed studies evaluating structural racism and cancer mortality disparities to highlight opportunities, challenges, and future directions to capture this broad concept in simulation modeling research. METHODS: We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses-Scoping Review Extension guidelines. Articles published between 2018 and 2023 were searched including terms related to race, ethnicity, cancer-specific and all-cause mortality, and structural racism. We included studies evaluating the effects of structural racism on racial and ethnic disparities in cancer mortality in the United States. RESULTS: A total of 8345 articles were identified, and 183 articles were included. Studies used different measures, data sources, and methods. For example, in 20 studies, racial residential segregation, one component of structural racism, was measured by indices of dissimilarity, concentration at the extremes, redlining, or isolation. Data sources included cancer registries, claims, or institutional data linked to area-level metrics from the US census or historical mortgage data. Segregation was associated with worse survival. Nine studies were location specific, and the segregation measures were developed for Black, Hispanic, and White residents. CONCLUSIONS: A range of measures and data sources are available to capture the effects of structural racism. We provide a set of recommendations for best practices for modelers to consider when incorporating the effects of structural racism into simulation models.
Trentham-Dietz A, Corley DA, Del Vecchio NJ
… +10 more, Greenlee RT, Haas JS, Hubbard RA, Hughes AE, Kim JJ, Kobrin S, Li CI, Meza R, Neslund-Dudas CM, Tiro JA
J Natl Cancer Inst Monogr
· 2023 Nov · PMID 37947335
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Population models of cancer reflect the overall US population by drawing on numerous existing data resources for parameter inputs and calibration targets. Models require data inputs that are appropriately representative,...Population models of cancer reflect the overall US population by drawing on numerous existing data resources for parameter inputs and calibration targets. Models require data inputs that are appropriately representative, collected in a harmonized manner, have minimal missing or inaccurate values, and reflect adequate sample sizes. Data resource priorities for population modeling to support cancer health equity include increasing the availability of data that 1) arise from uninsured and underinsured individuals and those traditionally not included in health-care delivery studies, 2) reflect relevant exposures for groups historically and intentionally excluded across the full cancer control continuum, 3) disaggregate categories (race, ethnicity, socioeconomic status, gender, sexual orientation, etc.) and their intersections that conceal important variation in health outcomes, 4) identify specific populations of interest in clinical databases whose health outcomes have been understudied, 5) enhance health records through expanded data elements and linkage with other data types (eg, patient surveys, provider and/or facility level information, neighborhood data), 6) decrease missing and misclassified data from historically underrecognized populations, and 7) capture potential measures or effects of systemic racism and corresponding intervenable targets for change.
J Natl Cancer Inst Monogr
· 2023 Nov · PMID 37947334
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BACKGROUND: Lung cancer is the leading cause of cancer deaths and disproportionately affects self-identified Black or African American ("Black") people, especially considering their relatively low self-reported smoking i...BACKGROUND: Lung cancer is the leading cause of cancer deaths and disproportionately affects self-identified Black or African American ("Black") people, especially considering their relatively low self-reported smoking intensity rates. This study aimed to determine the relative impact of smoking history and lung cancer incidence risk, histology, stage, and survival on these disparities. METHODS: We used 2 lung cancer models (MichiganLung-All Races and MichiganLung-Black) to understand why Black people have higher rates of lung cancer deaths. We studied how different factors, such as smoking behaviors, cancer development, histology, stage at diagnosis, and lung cancer survival, contribute to these differences. RESULTS: Adjusted for smoking history, approximately 90% of the difference in lung cancer deaths between the overall and Black populations (born in 1960) was the result of differences in the risk of getting lung cancer. Differences in the histology and stage of lung cancer and survival had a small impact (4% to 6% for each). Similar results were observed for the 1950 and 1970 birth cohorts, regardless of their differences in smoking patterns from the 1960 cohort. CONCLUSIONS: After taking smoking into account, the higher rate of lung cancer deaths in Black people can mostly be explained by differences in the risk of developing lung cancer. As lung cancer treatments and detection improve, however, other factors may become more important in determining differences in lung cancer mortality between the Black and overall populations. To prevent current disparities from becoming worse, it is important to make sure that these improvements are available to everyone in an equitable way.