Racism, Discrimination, Medical Mistrust, Stigma, and Lung Cancer Screening: A Scoping Review

Abstract

Lung cancer screening can reduce lung cancer-specific mortality, but it is widely underutilized, especially among minoritized populations that bear a disproportionate burden of lung cancer, such as Black Americans. Racism, discrimination, medical mistrust, and stigma contribute to lower uptake of preventive screenings in general, but the role these factors play in lung cancer screening is unclear. We therefore conducted a scoping review to synthesize the literature regarding how racism, discrimination, medical mistrust, and stigma relate to lung cancer screening. Informed by PRISMA-ScR guidelines, we searched five databases for relevant literature, and two trained researchers independently reviewed articles for relevance. We conducted a narrative, descriptive analysis of included articles. A total of 45 studies met our inclusion criteria. Most articles reported on medical mistrust or one of its cognates (e.g., trust and distrust, n=37) and/or stigma (n=25), with several articles focusing on multiple constructs. Few articles reported on racism (n=3), and n=1 article reported on discrimination. Results from empirical studies suggest that medical mistrust, distrust, and stigma may be barriers to lung cancer screening, whereas trust in health care providers may facilitate screening. The articles reporting on racism were commentaries calling attention to the impact of racism on lung cancer screening in Black populations. Overall, novel interventions are needed to promote trust and reduce mistrust, distrust, and stigma in lung cancer screening initiatives. Dedicated efforts are especially needed to understand and address the roles that racism and discrimination may play in lung cancer screening.

Introduction

Lung cancer is the leading cause of cancer-related mortality in the U.S., with an overall 5-year survival rate of only 25% (Siegel et al., 2024). Survival is strongly determined by the stage of diagnosis, and lung cancer screening can improve mortality rates by identifying cancer at earlier stages. The National Lung Screening Trial (NLST) found that screening for lung cancer with low-dose computed tomography (LDCT) facilitates early detection and reduces lung cancer mortality by 20% relative to chest x-ray (National Lung Screening Trial Research Team, 2011). As a result, the United States Preventive Services Task Force (USPSTF) set forth lung cancer screening guidelines in 2013 based on age in years (initially ages 55–80 and updated in 2021 to include ages 50–54 years) and smoking history in pack-years (initially ≥30 pack-years and updated in 2021 to ≥20 pack-years), focusing on individuals who either currently smoke or quit within the prior 15 years (U.S. Preventive Services Task Force, 2021).

Although lung cancer screening can reduce lung cancer-specific mortality, it is widely underutilized. Estimates about LCS rates vary depending on the data source and methods used, but recent studies suggest the prevalence of LCS in the U.S. is only between 4% and 21% (Bandi et al., 2024; Fedewa et al., 2020; Henderson et al., 2024; Lopez-Olivo et al., 2020; Maki et al., 2023; Zahnd & Eberth, 2019). The prevalence and uptake of lung cancer screening is even lower among populations that bear a disproportionate burden of lung cancer, such as Black Americans (Kunitomo et al., 2022; Sosa et al., 2021). In one of the first exploratory studies evaluating racial lung cancer screening inequities, Japuntich and colleagues found that screening-eligible non-Black patients were 2.8 times more likely to be screened than screening-eligible Black patients (Japuntich et al., 2018). More recent research and systematic reviews have found similar trends where Black individuals and individuals with lower socioeconomic status are less likely than white individuals and those with higher socioeconomic status, respectively, to receive LDCT when eligible (Kunitomo et al., 2022; Sosa et al., 2021). Furthermore, emerging research suggests lung cancer screening may be underused among several other populations, such as women, LGBTQ+ communities, people living with HIV, and persons with serious mental illness (Flores et al., 2019; Islam et al., 2023; Sandler et al., 2021; Solmi et al., 2020; Titan et al., 2022).

The overall low rate of lung cancer screening and associated inequities in screening receipt suggest a critical need to understand barriers limiting screening uptake. Narayan and colleagues posited some of these barriers to uptake as they evaluated the impact of the revised 2021 USPSTF lung cancer screening guidelines (Narayan et al., 2021). For example, they noted the roles of implicit racial and ethnic biases (which can reflect racism in the environment and perpetuate discrimination), medical mistrust, and stigma in limiting equitable access to lung cancer screening (Galvan & Payne, 2024; Narayan et al., 2021; Payne & Hannay, 2021). Racism, discrimination, medical mistrust, and stigma are indeed potential contributors to inequities in health outcomes (Hatzenbuehler et al., 2013; Krieger, 2014; J. Richmond et al., 2024; Williams et al., 2019). Although no single definition exists for these constructs, racism has been defined as an “organized social system in which the dominant racial group, based on an ideology of inferiority, categorizes and ranks people into social groups called “races” and uses its power to devalue, disempower, and differentially allocate valued societal resources and opportunities to groups defined as inferior (Williams et al., 2019).” Discrimination has been described as intentional or unintentional unfair actions or inactions taken towards people who belong to an outside group (Davis, 2020; Krieger, 2014). Discrimination can result in unfair treatment of groups based on a variety of social characteristics, such as race, ethnicity, gender, socioeconomic status, sexual orientation, religion, and body size. Stigma overlaps with racism and discrimination as it entails the “co-occurrence of labeling, stereotyping, separation, status loss, and discrimination in a context in which power is exercised (Hatzenbuehler et al., 2013).” Medical mistrust can be described as the general suspicion or belief that a trustee (e.g., a medical provider or institution) might provide suboptimal care or actively harm a patient (Griffith et al., 2021; J. Richmond et al., 2024). These rational mistrustful beliefs can arise from ongoing and historical racism, discrimination, and stigma directed towards groups that have been deemed inferior and labeled as an outsider by people and institutions with power. As cognates of mistrust, distrust and low trust are also often in the context of medical mistrust (Griffith et al., 2021). Distrust has been explained as, “unease or suspicion of health care entities but typically refers to attitudes about a specific object (e.g., a patient’s primary care provider)” (Griffith et al., 2021; J. Richmond et al., 2024). Contrary to mistrust and distrust, trust has been described as one’s, “willingness to be vulnerable under conditions of risk and uncertainty” (J. Richmond et al., 2024). Definitions for each of these constructs are summarized in Table 1.

Table 1.

Constructs of Focus in Included Articles

Construct	Example Definition	No. (%) of studies overall (N=45)	No. (%) of empirical studies (N=27)	No. (%) of commentaries/ reviews/ protocols (N=18)
Racism	An “organized social system in which the dominant racial group, based on an ideology of inferiority, categorizes and ranks people into social groups called “races” and uses its power to devalue, disempower, and differentially allocate valued societal resources and opportunities to groups defined as inferior (Williams et al., 2019).”	3 (7%)	0 (0%)	3 (17%)
Discrimination	Discrimination has been described as intentional or unintentional unfair actions or inactions taken towards people who belong to an outside group (Davis, 2020; Krieger, 2014).	1 (2%)	1 (4%)	0 (0%)
Mistrust	Medical mistrust can be described as the general suspicion or belief that a trustee (e.g., a medical provider or institution) might provide suboptimal care or actively harm a patient (Griffith et al., 2021; Richmond et al., 2024).	10 (22%)	3 (11%)	7 (39%)
Distrust	Distrust has been explained as, “unease or suspicion of health care entities but typically refers to attitudes about a specific object (e.g., a patient’s primary care provider) (Griffith et al., 2021; Richmond et al., 2024).”	8 (18%)	5 (19%)	3 (17%)
Trust	Trust has been described as one’s, “willingness to be vulnerable under conditions of risk and uncertainty (Anderson & Griffith, 2022; Richmond et al., 2024).”	19 (42%)	13 (48%)	6 (33%)
Stigma	Stigma overlaps with racism and discrimination as it entails the “co-occurrence of labeling, stereotyping, separation, status loss, and discrimination in a context in which power is exercised (Hatzenbuehler et al., 2013).”	25 (56%)	12 (44%)	13 (72%)

Note: Studies that addressed multiple psychosocial factors are included in multiple categories.

Given the critical role of early detection in reducing lung cancer mortality and the persistent disparities in screening uptake among populations at higher cancer risk, understanding barriers to equitable lung cancer screening access and receipt is essential. Additionally, although growing research has linked racism, discrimination, medical mistrust, and stigma with various health outcomes (e.g., poorer mental health and delays in cervical cancer screening), the extent of literature connecting these constructs to lung cancer screening remains unclear (Hatzenbuehler et al., 2013; Herbach et al., 2024; Krieger, 2014; J. Richmond et al., 2024; Williams et al., 2019). Racism, discrimination, medical mistrust, and stigma may be particularly relevant to lung cancer screening given the unique features of this screening type. For example, lung cancer screening differs from all other cancer screening types because screening eligibility goes beyond age and sex/gender to also include a smoking history requirement due to the strong association between smoking and lung cancer (Rankin et al., 2020). Tobacco smoking is heavily stigmatized in many countries as, for example, people may assume individuals who smoke do not care about their health (David et al., 2024; Rankin et al., 2020). Additionally, the tobacco industry has concentrated their marketing and retailer availability in neighborhoods with higher proportions of low income and racially/ethnically minoritized residents (Kong et al., 2024; Lee et al., 2015). This practice is facilitated by structural racism and discriminatory systems that create residentially segregated neighborhoods (Diez Roux & Mair, 2010; Kong et al., 2021). Tobacco companies have also used discriminatory tactics to target their marketing to LGBTQ+ communities and individuals with serious mental illness, likely contributing to higher smoking rates and increased lung cancer screening eligibility in both populations (American Lung Association, 2024; Apollonio & Malone, 2005; Veliz et al., 2019). Furthermore, in the U.S., the Centers for Medicare and Medicare Services requires that patients have a shared decision making discussion with a health care provider to review screening benefits and harms—another unique component of lung cancer screening (Centers for Medicare & Medicaid Services, 2022). Medical mistrust and stigma may influence outcomes of the discussion if patients feel they are being judged for smoking or are suspicious of their provider’s motives for recommending screening.

Collectively, there are several unique aspects of lung cancer screening that suggest several mechanisms by which racism, discrimination, medical mistrust, and stigma may affect lung cancer screening. We therefore conducted a scoping review of the literature to understand how these constructs may relate to lung cancer screening receipt and outcomes. By systematically reviewing available evidence, we aimed to identify gaps in the scientific understanding of how these constructs influence lung cancer screening outcomes and highlight potential avenues for future research and intervention to improve lung cancer outcomes for diverse populations (Munn et al., 2018).

Methods

Our approach was guided by the PRISMA extension for scoping reviews (PRISMA-ScR) guidelines (Tricco et al., 2018). An internal protocol was developed to guide this scoping review. This protocol was not registered in PROSPERO, an international database where researchers prospectively register systematic reviews, because PROSPERO does not accept scoping review submissions (National Institute for Health and Care Research). A set of inclusion and exclusion criteria was established to search and include relevant literature. All articles required a focus on how medical mistrust, racism, discrimination, and/or stigma relate to lung cancer screening uptake and adherence. Articles focusing on trust or distrust were also included as cognates of medical mistrust. Articles needed to have an explicit focus on any aspect of lung cancer screening (e.g., decision-making, uptake, or adherence) and be published in English. Because we aimed to provide an overview and map of the literature in this area, we included a broad range of article types, including empirical or analytical studies, commentaries, review articles, and study protocols. We included empirical articles that assessed one of our psychosocial variables of interest in their methods/results and commentary/review/protocol articles that similarly referenced one of the variables of interest in the overall paper. Studies conducted in any country were eligible for inclusion. Books, technical reports, and non-peer reviewed literature were excluded from the search.

We collaborated with a research librarian to develop MeSH terms and Boolean operators to search relevant literature. We identified medical science as the main field of focus and searched the following databases: PubMed, EBSCOhost, EMBASE, PsycINFO, and Web of Science. We searched for peer-reviewed journal articles published in English after January 1, 2014. We chose this as a starting date because the United States Preventive Services Task Force first published their recommendation for lung cancer screening on December 31, 2013 (U.S. Preventive Services Task Force, 2021). The last search was performed on October 12, 2021. Supplemental File 1 provides the search terms and Boolean operators used for each database.

The research team used Covidence software to sort the literature and remove duplicates that resulted from the search strategy. The Covidence platform streamlines the process of systematic and scoping reviews, and also facilitates review by multiple researchers. For this project, the review process was split into a title/abstract review and a full text review. During both stages, each of the publications identified by our search were screened by two reviewers and required two reviews of agreement to advance to the next stage (McKeown & Mir, 2021). Conflicts at all stages were deliberated amongst the review team (SM, AP, KN, TH) to achieve consensus on inclusion, and a final decision was recorded by two senior authors (JR and MA).

The included articles from the full text review stage were then extracted for relevant information. A data extraction form was developed using Covidence software. Data extraction was completed by four reviewers (SM, AP, KN, TH), with two reviewers extracting information from each publication. We also reviewed the references cited in each article included in the full text review stage to identify other potentially relevant articles. Conflicts were deliberated amongst the research team to achieve consensus, and a final decision was recorded by two senior authors (JR and MA).

The following data was abstracted from the sorted literature: general information about the publication (paper title, journal name, year of publication, authors), details of the study (objective, funding sources, study design, geographic location where the study was conducted), participant information (study population description, sample size, race and ethnicity, gender, age), psychosocial factors discussed (which factors were included, how they were measured, theoretical or conceptual frameworks presented), and a summary of relevant key findings. We conducted a narrative, descriptive synthesis of the abstracted information to identify the scope of the literature in this field, understand knowledge gaps, and summarize key findings from included articles (Dixon-Woods et al., 2005).

Results

Characteristics of Included Studies

The initial search of the electronic databases yielded 5,579 results. This pool of literature was uploaded to the Covidence software, and 1,675 duplicates were removed. From there, 3,904 articles were moved to the title/abstract screening stage in which 3,760 articles did not meet inclusion criteria and were excluded from further consideration. A total of 144 articles were selected to move on to the full text review phase. During the full text review, 101 articles were excluded (see Figure 1). The resulting 43 articles were deemed eligible for inclusion in this scoping review and moved forward for data extraction. We reviewed the references cited in the 43 eligible articles and identified two additional articles eligible for inclusion, resulting in 45 articles included in this review. Figure 1 illustrates the PRISMA screening flowchart. Summaries of the 45 empirical articles and commentary/review/protocol articles are presented in Tables 2 and 3, respectively.

Figure 1.

PRISMA Diagram of Articles Included in the Review

Table 2.

Characteristics of Empirical Studies Included in Review (N=27)

No.	Author(s), Publication Year	Title	Study Design	No. of Participants	Race and Ethnicity of Participants	Genders of Participants	Ages of Participants	Construct(s) Included
1	(Ali et al., 2015)	Barriers to uptake among high-risk individuals declining participation in lung cancer screening: A mixed methods analysis of the UK lung cancer screening (UKLS) trial	Randomized controlled trial; Qualitative study; Mixed methods	4061	Not specified	Men; Women	Younger age (≤65 years); Recently retired (66–70 years), Older population (≥71 years)	Mistrust
2	(Draucker et al., 2020)	Smoking-Related Social Interactions as Experienced by Persons Who Smoked Long-term	Qualitative study	39	Black and/or African American; White; American Indian or Alaska Native; Multi- racial and/or multi-ethnicity	Men; Women	Mean = 62 years; Age Range = 55–70 years	Stigma; Trust; Mistrust; Distrust
3	(Cardarelli et al., 2017)	Identifying community perspectives for a lung cancer screening awareness campaign in Appalachia Kentucky: The Terminate Lung Cancer (TLC) Study	Qualitative study	54	White	Men; Women	Mean = 61.76 years (SD=4.8)	Trust
4	(Carter-Harris, Brandzel, et al., 2017)	A qualitative study exploring why individuals opt out of lung cancer screening	Qualitative study	18	Black and/or African American; White; Multi-racial and/or multi-ethnicity	Men; Women	Median = 68 years; Age range = 55–74 years	Distrust
5	(Carter-Harris, Ceppa, et al., 2017)	Lung cancer screening: what do long-term smokers know and believe?	Qualitative study	26	Black and/or African American; White; Hispanic or Latino	Men; Women	Mean = 66 years	Stigma; Distrust
6	(Carter-Harris et al., 2019)	Understanding lung cancer screening behaviour using path analysis	Cross sectional study	515	Black and/or African American; White; American Indian or Alaska Native; Asian; Native Hawaiian and/or Pacific Islander; Hispanic or Latino; Multi-racial and/or multi-ethnicity; "Other"	Men; Women	Mean = 61.4 years (SD=5.4); Age Range = 55–80 years	Stigma; Mistrust
7	(Damhus et al., 2021)	Psychosocial consequences of a three- month follow-up after receiving an abnormal lung cancer CT-screening result: A longitudinal survey	Cohort study	130	Not Specified	Men; Women	Median = 59 years	Stigma
8	(das Nair et al., 2014)	Exploring recruitment barriers and facilitators in early cancer detection trials: The use of pre-trial focus groups	Qualitative study	32	Not Specified	Men; Women	Mean = 63 years	Stigma
9	(Duong et al., 2017)	Patient and primary care provider attitudes and adherence towards lung cancer screening at an academic medical center	Cross sectional study	80 patients completed survey; 31 providers completed survey	Black and/or African American; White; Asian; Hispanic or Latino; Multi-racial and/or multi-ethnicity	Men; Women	Mean = 65 years	Trust
10	(Golden et al., 2020)	“I’m Putting My Trust in Their Hands” A Qualitative Study of Patients’ Views on Clinician Initial Communication About Lung Cancer Screening	Qualitative study	51	Black and/or African American; White; Hispanic or Latino; Refused to answer	Men; Women	Mean = 63 years (SD=5.83)	Trust
11	(Greene et al., 2019)	Challenges to Educating Smokers About Lung Cancer Screening: a Qualitative Study of Decision Making Experiences in Primary Care	Qualitative study	37	Black and/or African American; “Minority race;” Declined to Answer	Men; Women	Mean = 62 years; Age Range = 55–72 years	Trust
12	(Gressard et al., 2017)	A qualitative analysis of smokers’ perceptions about lung cancer screening	Qualitative study	105	Black and/or African American; White; “Other”	Men; Women	Mean = 53 years; Age range = 41–67 years	Distrust
13	(Jia et al., 2020)	Barriers to low-dose CT lung cancer screening among middle-aged Chinese	Cross sectional study	640	Asian	Men; Women	Mean = 48.02 years (SD=5.07)	Trust; Distrust
14	(Kummer et al., 2020)	Mapping the spectrum of psychological and behavioural responses to low-dose CT lung cancer screening offered within a Lung Health Check	Qualitative study	28	White; “Non-white”	Men; Women	Mean = 66 years	Stigma
15	(Lowenstein et al., 2019)	Real-world lung cancer screening decision-making: Barriers and facilitators	Qualitative study	42	Black and/or African American; White; American Indian or Alaska Native; Asian; Native Hawaiian and/or Pacific Islander; Hispanic or Latino	Men; Women	Mean = 62 years	Trust
16	(Mishra et al., 2016)	Patient Perspectives on Low-Dose Computed Tomography for Lung Cancer Screening, New Mexico, 2014	Qualitative study	22	Black and/or African American; White; Hispanic or Latino	Men; Women	Mean = 58.6 years (SD=8.43)	Trust
17	(Quaife et al., 2017)	Attitudes towards lung cancer screening in socioeconomically deprived and heavy smoking communities: informing screening communication	Cross sectional study; Qualitative study; Mixed methods	Survey = 163 Interview = 21	White; “Non-white”	Men; Women	Age range = 41–80+ years	Stigma
18	(Quaife et al., 2021)	Psychological Targets for Lung Cancer Screening Uptake: A Prospective Longitudinal Cohort Study	Cohort study	7730	Black and/or African American; White; Asian; Multi-racial and/or multi-ethnicity; “Other ethnic group;” “Prefer not to say”	Men; Women	Mean = 64.6 years (SD=6.2); Age range = 55–77 years	Stigma
19	(Quaife et al., 2022)	Development and psychometric testing of the self-regulatory questionnaire for lung cancer screening (SRQ-LCS)	Cross sectional study	1333	White; “Minority ethnic group”	Men; Women	Mean = 64.6 years (SD=6.2)	Stigma
20	(Rasmussen et al., 2015)	Psychosocial consequences in the Danish randomised controlled lung cancer screening trial (DLCST)	Randomized controlled trial	4104	Not Specified	Men; Women	Median = 57 years; Age Range = 53–61 years	Stigma
21	(Rodríguez-Rabassa et al., 2020)	Perceptions of and Barriers to Lung Cancer Screening Among Physicians in Puerto Rico: A Qualitative Study	Qualitative study	37 patients; 30 primary care providers	Black and/or African American; White; Hispanic or Latino; “Other”	Men; Women	Patient age range = 55–80 years; Provider age range = 25–64 years	Trust
22	(Roth et al., 2018)	A qualitative study exploring patient motivations for screening for lung cancer	Cross sectional study; Qualitative study; Mixed Methods	20	White; “Not specified”	Men; Women	Age Range: 55–75+ years	Trust
23	(Sayani et al., 2021)	Advancing health equity in cancer care: The lived experiences of poverty and access to lung cancer screening	Qualitative study	18	White; Asian; “Other” (including Indigenous, Indian, and Latin American)	Men; Women	Age Range = 50–70+ years	Trust
24	(Schapira et al., 2016)	How patients view lung cancer screening: The role of uncertainty in medical decision making	Qualitative study	22	Black and/or African American; White	N/A	N/A	Trust
25	(Soneji et al., 2020)	Occurrence of Discussion about Lung Cancer Screening Between Patients and Healthcare Providers in the USA, 2017	Cross sectional study	1667	Black and/or African American; White; Asian; Hispanic or Latino; “Non- Hispanic Other”	Men; Women	Age Range = 55–80 years	Trust
26	(Tonge et al., 2019)	“To know or not to know...?” Push and pull in ever smokers lung screening uptake decision-making intentions	Qualitative study	33	Black and/or African American; White; Asian; “Unknown”	Men; Women	Age Range = 50–80 years	Stigma
27	(Williams et al., 2021)	Using Implementation Science to Disseminate a Lung Cancer Screening Education Intervention Through Community Health Workers	Pre-post intervention study	77	Black and/or African American; White; Hispanic or Latino	Men; Women	Mean = 44.8 years (SD=14.6)	Discrimination; Stigma

Table 3.

Characteristics of Commentary, Review, and Study Protocol Studies Included in Review (N=18)

No.	Author(s), Publication Year	Title	Study Design	Construct(s) Included
1	(Baldwin et al., 2021)	Participation in lung cancer screening	Narrative review	Stigma; Distrust
2	(Borondy Kitts, 2019)	The Patient Perspective on Lung Cancer Screening and Health Disparities	Commentary, editorial, or opinion article	Stigma; Trust; Mistrust
3	(Carter-Harris et al., 2016)	Lung Cancer Screening Participation: Developing a Conceptual Model to Guide Research	Narrative review; Conceptual model development	Stigma; Mistrust
4	(Carter-Harris & Gould, 2017)	Multilevel Barriers to the Successful Implementation of Lung Cancer Screening: Why Does It Have to Be So Hard?	Commentary, editorial, or opinion article	Stigma; Mistrust
5	(Carter-Harris, 2020)	Hidden in plain sight: Psychological barriers to participation in lung cancer screening	Commentary, editorial, or opinion article	Stigma; Mistrust
6	(Duncan & Sears, 2020)	Patient Perspectives on Shared Decision-Making in Lung Cancer Screening: To Teach or To Trust?	Commentary, editorial, or opinion article	Trust
7	(Egyud & Burt, 2022)	Commentary: The structure of structural racism revealed by lung cancer screening	Commentary, editorial, or opinion article	Racism
8	(El-Dalati, 2021)	Reason for Consult: Institutional Racism	Commentary, editorial, or opinion article	Racism
9	(Hamann et al., 2018)	Multilevel Opportunities to Address Lung Cancer Stigma across the Cancer Control Continuum	Narrative Review	Stigma
10	(Kirby, 2020)	Reducing stigma around smoking would encourage more early lung cancer screening	Commentary, editorial, or opinion article	Stigma
11	(Lei & Lee, 2019)	Barriers to Lung Cancer Screening With Low-Dose Computed Tomography	Integrative review	Stigma; Trust; Distrust
12	(Lei & Zheng, 2021)	Perceptions of lung cancer screening and smoking behavior change among Chinese immigrants: A systematic review	Systematic review	Stigma; Distrust
13	(Prosper et al., 2020)	Lung Cancer Screening in African Americans: The Time to Act Is Now	Commentary, editorial, or opinion article	Racism; Stigma; Trust; Mistrust
14	(Quaife et al., 2016)	The Lung Screen Uptake Trial (LSUT): Protocol for a randomised controlled demonstration lung cancer screening pilot testing a targeted invitation strategy for high risk and 'hard-to-reach' patients	Study protocol	Stigma
15	(Rankin et al., 2020)	Lung cancer screening implementation: Complexities and priorities	Narrative review	Stigma; Mistrust
16	(Wang et al., 2019)	Barriers to Lung Cancer Screening Engagement from the Patient and Provider Perspective	Narrative Review	Stigma
17	(Watson et al., 2020)	The SHARED Project: A Novel Approach to Engaging African American Men to Address Lung Cancer Disparities	Study protocol	Trust; Mistrust
18	(Wolf, 2020)	Commentary: Black Lives Matter-Why We Need to Fix Racial Disparities in Lung Cancer Screening	Commentary, editorial, or opinion article	Trust

The included articles had varying study characteristics. For study design, 27 (60%) were empirical studies (Table 2). Of these, 15 were qualitative studies, nine used quantitative methods, and three used mixed methods. A total of 18 articles (40%) were commentaries, reviews, or study protocols (Table 3). More specifically, nine were commentary, opinion, or editorial articles; seven were review articles; and two were study protocols. Commentary and review articles largely summarized key facilitators (e.g., trust) and barriers (e.g., racism, mistrust, stigma) to lung cancer screening and called for future research and interventions to address these facilitators/barriers. The study protocols described plans to evaluate whether targeted invitation materials aimed to reduce stigma will improve lung cancer screening uptake (Quaife et al., 2016) and methods to engage Black men in a trusted partnership to develop lung cancer screening decision aids (Watson et al., 2020).

A majority of the empirical studies (59%) were conducted in the United States. Other countries included the UK, Denmark, China, and Canada. Study sample sizes varied greatly (ranging from n=18 to n=7,730 individuals). The articles included participants of diverse ages, races, ethnicities, and genders (Table 2).

Use of Conceptual and Theoretical Models and Frameworks

Seventeen of the included articles used a conceptual or theoretical framework/model. Several of these studies applied more than one model or framework. The Health Belief Model—a model widely used to explain and predict health behaviors—was used the most frequently (in five articles) (Carter-Harris, Brandzel, et al., 2017; Carter-Harris, Ceppa, et al., 2017; Carter-Harris et al., 2016; Carter-Harris et al., 2019; Williams et al., 2021). Three studies applied the Precaution Adoption Process Model, which aims to explain the stages involved in making a decision and translating it into action (Carter-Harris et al., 2016; Carter-Harris et al., 2019; Quaife et al., 2016). Two studies applied the Social Ecological Model (Gressard et al., 2017; Hamann et al., 2018), and another two studies applied the Self-Regulation Model (Quaife et al., 2022; Quaife et al., 2021). Other conceptual models and frameworks, such as the Protection Motivation Theory, were applied in only one included study. Of note, Carter-Harris and colleagues applied both the Health Belief Model and Precaution Adoption Process Model to develop their own conceptual model for lung cancer screening participation (Carter-Harris et al., 2016).

Scope of Racism, Discrimination, Mistrust, and Stigma Foci in Lung Cancer Screening Research

Following our inclusion criteria, each of the included articles focused on at least one psychosocial variable of interest for this review (i.e., racism, discrimination, mistrust, or stigma), with many focusing on two or more of these variables. Table 1 outlines the number of articles that focus on each psychosocial variable of interest. Below, we summarize key findings from the articles on each of the psychosocial variables of interest.

Racism.

No empirical articles focused on racism, but three commentaries discussed racism in the context of lung cancer screening (Table 2 and Table 3). The commentaries called attention to the impact of racism on lung cancer screening in Black populations (Egyud & Burt, 2022; El-Dalati, 2021; Prosper et al., 2020). For example, one commentary described the case of an African American patient diagnosed with lung cancer after institutional racism and health system failures caused several missed opportunities for lung cancer screening and an earlier diagnosis (El-Dalati, 2021). Another commentary reflected on how structural racism, operating through redlining, influences racial inequities in lung cancer screening (Egyud & Burt, 2022).

Discrimination.

One empirical study and no commentary/review/protocol articles reported on the relationship between discrimination and lung cancer screening (Table 2 and Table 3). Williams and colleagues conducted a pre-posttest assessment of a pilot community health worker intervention aimed to increase lung cancer screening awareness (Williams et al., 2021). The authors did not find a significant difference post-intervention in participant perceptions of financial discrimination (e.g., the acceptability of banks refusing to make loans to people with cancer) (Williams et al., 2021). This result was reported in a table, but discrimination was not a primary focus of this paper.

Mistrust, Distrust, and Trust.

Three empirical articles described mistrust (Table 2). One of these articles found that medical mistrust was negatively associated with lung cancer screening participation in a survey of screening-eligible participants (Carter-Harris et al., 2019). One paper examined barriers to participation in a lung cancer screening trial using a qualitative approach and identified medical mistrust as an emotional barrier (Ali et al., 2015). This article reported medical mistrust as an identified barrier in a table, but did not expand on this result in the text. The third paper described medical mistrust as a key variable in its parent study, but did not focus on mistrust in the results of the current paper (Draucker et al., 2020). Seven of the commentary/review/protocol articles discussed mistrust (Table 3). These articles largely described mistrust as a psychological and/or patient-level barrier to screening. One editorial explicitly placed medical mistrust in the context of history, noting that medical mistrust arises from ‘a dark history of maltreatment by the medical community’ (Prosper et al., 2020).

Five empirical articles described distrust in the context of lung cancer screening (Table 2). These studies largely identified distrust as a screening barrier. For example, empirical qualitative studies identified distrust of entities such as the health care system, government, and tobacco industry as key barriers (Carter-Harris, Brandzel, et al., 2017; Carter-Harris, Ceppa, et al., 2017; Gressard et al., 2017). One of these qualitative studies found that the possibility of a false-positive result caused participants to distrust the value of lung cancer screening (Carter-Harris, Brandzel, et al., 2017). Similarly, a quantitative survey of Chinese individuals found distrust in doctors was negatively associated with intention to uptake lung cancer screening, but distrust in hospitals was not associated with this outcome (Jia et al., 2020). Three review articles also included a focus on distrust, all describing distrust as a screening barrier (Table 3) (Baldwin et al., 2021; Lei & Lee, 2019; Lei & Zheng, 2021).

Thirteen empirical articles and six commentary/review/protocol articles included a focus on trust (Table 2 and Table 3). These articles largely highlighted the importance of trust in patient-provider communication for lung cancer screening decision making. Trust in a health care provider and their recommendations was commonly identified as a screening facilitator. One qualitative study found that effective communication with trusted providers could help mitigate uncertainty around lung cancer screening (e.g., the potential for false-positive results) (Schapira et al., 2016). Another qualitative study found that patients emphasized testimonials as trusted information and communication sources (Cardarelli et al., 2017).

Overall, articles that included a trust-related focus often used the terms mistrust, distrust, and low trust interchangeably. At times, articles did not specify the trusted object of interest (e.g., health care providers, health care systems, or the screening machine/technology). Articles also frequently noted mistrust, distrust, or trust in their results but did not elaborate (e.g., by noting that participants mentioned distrust as a screening barrier in qualitative research without additional elaboration).

Stigma.

Of the empirical studies included in this review, twelve articles focused on stigma (Table 2). These studies generally identified smoking-related stigma as a barrier to lung cancer screening uptake as patients worried that they would be shamed for smoking and/or blamed if they received a lung cancer diagnosis. For example, these studies often found that patients worried health care providers would treat them unfairly and/or blame them for their poor health due to their smoking behaviors (Draucker et al., 2020; Kummer et al., 2020; Quaife et al., 2017). Self-stigma and Self-blame (e.g., internalizing public stigma and blaming oneself for developing lung cancer) were also identified as screening barriers due to smoking-related stigma (Draucker et al., 2020; Kummer et al., 2020). Importantly, a minority of studies found unexpected relationships between stigma and lung cancer screening. Specifically, Quaife and colleagues found that perceiving lung cancer to be stigmatized was associated with increased screening uptake, and Carter-Harris and colleagues found that smoking-related stigma was associated with fewer perceived barriers to lung cancer screening (Carter-Harris et al., 2019; Quaife et al., 2021). Additionally, a study reporting results from an online survey found no significant association between perceived stigma and lung cancer screening intention among individuals who currently and formerly smoked (Quaife et al., 2022).

One notable randomized controlled study found that participants in the control group experienced greater negative psychosocial consequences (including stigmatization) than participants in the lung cancer screening intervention (Rasmussen et al., 2015). The authors speculated that because most participants in the intervention group were not diagnosed with lung cancer after screening, they may have experienced reassurance and relief from psychosocial consequences like stigmatization, whereas participants in the control group did not get this reassurance (Rasmussen et al., 2015). Another analysis of data from this same trial found that stigmatization slightly decreased between the time of an annual screening and a three-month follow up scan among participants who had a positive screening result (Damhus et al., 2021).

Thirteen commentary/review/protocol articles included a focus on stigma (Table 3). These articles often described stigma as a patient-level and/or psychological barrier to screening. However, a few notable articles placed stigma in a multilevel context that described societal influences (e.g., aggressive tobacco industry marketing) (Hamann et al., 2018; Rankin et al., 2020).

Discussion

We conducted a scoping review of over 5,500 published articles and identified 45 articles that met our inclusion criteria focused on relationships between medical mistrust, racism, discrimination, stigma, and lung cancer screening. Although the overall amount of literature in this area is somewhat limited, we found considerable empirical evidence suggesting medical mistrust, distrust, and stigma may be barriers to lung cancer screening among patients. Conversely, we found a paucity of empirical literature examining the relationship between racism, discrimination, and lung cancer screening. Furthermore, most of the empirical evidence in this field originates from studies conducted in the United States, showcasing a need for future research conducted in global settings where lung screening is available. Such research is particularly needed to elucidate heterogeneity in whether and how racism, discrimination, medical mistrust, and stigma may influence lung cancer screening outcomes within and across different countries and cultures. We also identified only a few interventions in our review, suggesting that future research may benefit from measuring racism, discrimination, mistrust, and/or stigma to understand how interventions may affect these important constructs. Furthermore, articles often focused on perceived racism, discrimination, mistrust, and stigma at the patient level, but these constructs can affect lung cancer screening at other levels (e.g., provider and health care system levels) that warrant further examination.

We also identified a need for future research that goes beyond individual-level analyses to consider how multiple and intersecting systems of oppression, such as racism and stigmatization, affect lung cancer screening. Indeed, articles included in this review typically examined racism, discrimination, mistrust, or stigma individually without applying intersectionality to examine these factors in relation to interlocking systems of oppression (Collins, 2015; Combahee River Collective, 2024; Crenshaw, 1989, 1991). Experiences of privilege and oppression do not exist in a vacuum, and applying an intersectional lens could identify novel contributors to lung cancer screening inequities. Examining intersectional stigma—in the context of oppressive social structures—may be particularly relevant for lung cancer screening given that screening-eligible patients may experience co-occurring stigma due to their smoking history and other identities or demographic characteristics (e.g., sexual orientation, weight, mental health history, or HIV status) (Berger, 2022; Bilenduke et al., 2023; Bowleg, 2022).

Despite a vast amount of literature showcasing associations between racism, discrimination, and various health outcomes, our review found almost no empirical literature examining these associations in the context of lung cancer screening (Hamed et al., 2022; Paradies et al., 2015; Williams et al., 2019). The single article discussing discrimination included a measure of financial discrimination, but discrimination was not a primary focus of the study (Williams et al., 2021). And, although we identified three commentaries calling attention to the role of racism in lung cancer screening in Black populations, there is a critical need for future empirical research to examine and disrupt associations between racism and lung cancer screening. Of note, since we completed analysis for this review, Poulson and colleagues published a study examining the association between structural racism (operationalized through historical redlining) and lung cancer screening completion in Boston (Poulson et al., 2021). Their results suggest that Black women in particular were less likely to receive lung cancer screening, especially in areas that were redlined. Another recent study, and an accompanying commentary, published the first qualitative evidence linking historical and present-day racism as a factor influencing mistrust of healthcare providers and avoidance of lung cancer screening (Carter-Bawa, 2024; Jennifer Richmond et al., 2024). Overall, additional research is needed to understand how structural forces, such as racism, drive inequities in lung cancer screening receipt. There are widespread opportunities to understand associations between racism, discrimination, and lung cancer screening across multiple levels (e.g., structural and personally mediated racism and discrimination based on race, ethnicity, gender, body size, and sexual orientation) (Boynton-Jarrett et al., 2021; Davis, 2020; Dean & Thorpe, 2022; Jones, 2000).

Our review of articles focused on mistrust, distrust, and trust suggests that trust in health care providers is a facilitator to lung cancer screening, whereas mistrust and distrust are barriers. These findings mirror prior research findings that trust-related constructs are important factors related to health services use (Benkert et al., 2019; Birkhauer et al., 2017). However, authors often used the terms low trust, mistrust, and distrust interchangeably without explanation or definitions. Conflation of trust-related constructs is common in the larger literature, but mistrust, distrust, and trust are distinct constructs that have distinct implications for interventions (Griffith et al., 2021; J. Richmond et al., 2024). For example, interventions aimed to build trust in individual health care providers will likely be ineffective at promoting lung cancer screening uptake if the core challenges are actually rooted in mistrust or distrust of the larger health care system. Furthermore, trust-related constructs were often described as a patient-level barrier to lung cancer screening. Without placing these constructs in the context of history and structures, such as racism in health care systems, mistrust and distrust can become more pervasive (Griffith et al., 2021; J. Richmond et al., 2024). Trustworthiness is another cognate of trust that focuses attention on both the systems and people that possess power in health care arenas, emphasizing the need for accountability to give the public a reason to trust and setting a framework for why mistrust and distrust may arise (Anderson & Griffith, 2022; J. Richmond et al., 2024). Interventions and health systems may better support marginalized patient populations by examining ways to increase their trustworthiness. Future research in this area should consider examining trustworthiness, concretely defining trust-related constructs, and ensuring important context is presented.

Additionally, our review highlights smoking-related stigma as a potential barrier to lung cancer screening uptake, consistent with previous literature linking smoking with a lack of social acceptance and differential treatment by health care providers (David et al., 2024; Lozano et al., 2020; Ostroff et al., 2022). However, there was not always a consistent pattern in studies that focused on stigma. For example, one study found that perceived lung cancer stigma was associated with increased lung cancer screening uptake, and another study found that smoking-related stigma was associated with fewer perceived barriers to lung cancer screening (Carter-Harris et al., 2019; Quaife et al., 2021). These unexpected findings mirror results from other research on smoking-related stigma where, in some cases, stigma may be associated with increased motivation to quit smoking to avoid social exclusion and shame, though these quit attempts may be less likely to succeed (David et al., 2024; Lozano et al., 2020). Conflicting findings about stigma may result from different definitions and conceptualizations of stigma-related constructs. Indeed, articles often did not describe how they defined stigma and applied individual-level conceptualizations by focusing on self-stigma and/or perceived stigma. Much of the published research on stigma applies a definition from 1963 that describes stigma as a deeply discrediting attribute that reduces someone to a tainted, discounted person (Goffman, 1963; Link & Phelan, 2001). However, focusing only on individual-level descriptions of stigma may perpetuate health inequities by putting the onus for overcoming stigma on individuals (e.g., by self-initiating discussions about lung cancer screening despite stigmatization from providers) rather than on people and systems that perpetuate stigmatizing behaviors (e.g., providers who stigmatize smoking behavior or employers who discriminate against people who smoke). Accordingly, scholars have argued that researchers should consider definitions where stigma is described as the “co-occurrence of labeling, stereotyping, separation, status loss, and discrimination in a context in which power is exercised” and highlight the role of stigmatization as a process of marking significant differences between categories of people and putting them in a social hierarchy where some people have more power than others (Hatzenbuehler et al., 2013; Link & Phelan, 2001; Parker & Aggleton, 2003). It is possible that research that applies individual-level conceptualizations of stigma may find different associations with lung cancer screening than research that applies systems-level conceptualizations focused on stigmatization, but future research is needed to examine this hypothesis. Future research should also consider applying meaningful language such as “stigmatization” to legitimize existing systems of inequity, while moving away from only depicting individual-level conceptualizations of stigma.

Collectively, our review identified several opportunities for growth in this field. Future contributions to the field should consider applying and adapting conceptual and/or theoretical models/frameworks. Theories are often used to help describe hypothesized relationships and associations between multiple constructs across broad outcomes (e.g., health behavior overall), whereas conceptual models similarly help depict relationships among constructs for specific outcomes (e.g., lung cancer screening receipt) (Brady et al., 2020; Earp & Ennett, 1991). These models and frameworks are particularly useful when framing specific research questions (e.g., by prompting researchers to measure important constructs related to their outcome and specify hypothesized relationships between these constructs). Yet, only about a third of articles included in this review applied a conceptual or theoretical model. Including conceptual or theoretical models may help researchers have clear construct definitions and measurements; our review suggests clarity is needed, especially for stigma-related research. Future research may also benefit from testing existing models and frameworks in the lung cancer screening context. One notable article included in our review reports on a conceptual model specifically for lung cancer screening participation (Carter-Harris et al., 2016). Future research may benefit from applying these models to develop novel lung cancer screening research questions. Updates to conceptual models will inform development of interventions as new relevant findings emerge (e.g., regarding the relationship between racism and lung cancer screening).

Our scoping review has important limitations. Although we developed our search strategy with an academic librarian (informationist), it is possible that our search missed relevant articles. We also focused our search on the peer-reviewed literature, and relevant articles in the gray literature may have been missed. Additionally, we reviewed articles published in English, and relevant articles published in other languages may have been excluded. Furthermore, of the included articles, only a few studies took place outside of the United States and our review was therefore unable to assess global differences in how racism, discrimination, medical mistrust, and stigma may influence lung cancer screening nor how conceptualizations of these constructs vary globally. Future research is needed to address this limitation and examine the impact of these psychosocial variables in global settings where lung screening is available. Our review also found that even when racism, discrimination, mistrust, and stigma were discussed in lung cancer screening articles, these constructs were often mentioned only briefly and not referenced in titles or abstracts. Therefore, it is possible we missed relevant articles where one of these constructs was mentioned but was not a key focus of the publication. Finally, the constructs of interest were typically discussed in isolation, which limited our ability to take an intersectional perspective and describe how these factors may interlock to affect lung cancer screening outcomes.

Conclusion

Our scoping review identified a growing body of literature suggesting that medical mistrust, distrust, and stigma may be barriers to lung cancer screening, whereas trust in health care providers may facilitate screening. However, there is a dearth of literature, especially empirical studies, focusing on racism, discrimination, and lung cancer screening. Novel interventions and policies are needed to promote trust and reduce mistrust, distrust, and stigma in lung cancer screening initiatives. Dedicated efforts are especially needed to understand and address the roles that racism and discrimination may play in screening in diverse populations. Overall, future research is needed that explicitly investigates how racism, discrimination, mistrust, and/or stigma affect lung cancer screening outcomes.