Introduction
In 2021 it is estimated that there will be 150,000 new diagnoses of colorectal cancer in the United States, and 53,000 patients will die from colorectal cancer.1 The burden of new colorectal cancer diagnoses and subsequent mortality will not be equally shared among all individuals. Specific, often disadvantaged, groups of individuals will experience higher rates of new colon cancer and be at higher risk of subsequent mortality. Healthcare disparities are defined as differences in health outcomes that are associated with characteristics of persons often represented by social and/or economic disadvantages.2 Common examples include differences in one’s health by race, geography, sexual orientation, religion, income, or disability.
Efforts to eliminate these disparities and to remove the unfair burden carried by certain groups are synonymous with efforts to promote health equity. In this review we will highlight 1) healthcare disparities that exist in the prevention, treatment, and outcomes of colorectal cancer, 2) potential reasons for why these healthcare disparities exists, and 3) potential interventions to address these disparities in the future. While many different types of disparities exist, this review will focus on racial disparities in colon and rectal cancer. More specifically, our focus will be on healthcare disparities experienced by Black patients in the United States given that this population has the highest incidence and mortality rate for colorectal cancer compared to other racial/ethnic groups.3,4
Background
Disparities in Colorectal Cancer Incidence
Data from National Cancer Registries between 2012–2016 shows that Black patients have an almost 20% higher incidence of colorectal cancer compared to Non-Hispanic White (NHW) patients (age adjusted incident rate for Blacks: 45.7 vs. 38.6 per 100,000 for NHW).5 These rates are even more pronounced in Black men who have an age adjusted rate of colorectal cancer of 53.8 per 100,000 compared to 44.0 in NHW men.5 Incidence rates of colorectal cancer over time by race are shown in Figure 1. Notably, rates of colorectal cancer have been significantly declining over time with the uptake of screening colonoscopies. However, the rate of decline was not equally shared over time with NHW patients experiencing earlier declines in the 2000’s compared to Black patients.5
Figure 1.
Age-adjusted Incidence rates by race for colorectal cancer in the United States over time. From https://seer.cancer.gov/explorer
While earlier reports highlighted increased rates of new colorectal cancers in young Black patients less than age 50, the incidence rates are now similar to NHW for this age group.5 The latest data from the Surveillance, Epidemiology, and End Results Program (SEER) in 2018 reports overall incidence rates for Black patients at 39.8 per 100,000 patients versus 36.4 for NHW patients.6 The causes for disparities in colorectal cancer incidence are complex and may be related to variations in risk factors including socioeconomic factors, health behaviors (i.e. tobacco use, physical activity), comorbidities (I.e. obesity), the utilization of preventative screening measures, and less clear genetic susceptibilities.
Disparities in Colorectal Cancer Mortality
Compared to differences in incidence, there is a more striking 38% difference in mortality for Black patients compared to NHW patients during years 2013–2017 (age adjusted mortality rate for Blacks: 19.0 vs. 13.8 per 100,000 for NHW).5 This mortality rate was highest among Black men at 23.8 per 100,000.5 SEER rates of mortality from colorectal cancers over time are shown in Figure 2.6 Similar to incidence rates, mortality rates have decreased over time. This change has been attributed to improvement in modifiable risk factors and preventative measures, however, differences in mortality still exist by race.
Figure 2.
Age-adjusted mortality rates by race for colorectal cancer in the United States over time. From https://seer.cancer.gov/explorer
The latest data from the SEER Program shows that Black patients have an age adjusted mortality rate of 16.8 per 100,000 patients compared to 13.1 NHW patients.6,7 Even in young patients with early stage disease, Black patients have been shown to consistently have higher mortality rates compared to NHW patients.8 The causes for disparities in mortality parallel those factors influencing the incidence of colorectal cancer and likely include factors at the patient, provider, healthcare system, and policy-levels which in turn influence early detection and treatment.
Disparities in Colorectal Cancer Screening
Colorectal cancer screening allows for removal of polyps to reduce the development and thus incidence of colorectal cancer as well as allows for early identification of malignant lesions to reduce subsequent mortality.9 This knowledge has led to rapid uptake of colorectal cancer screening in the 2000’s with a goal set by the Health People 2020 campaign to achieve 70% screening rates among eligible patients aged 50–75.5 Using data from the National Health Interview Study (NHIS), 52% of eligible patients met colorectal cancer screening guidelines in 2008 and this increased to 66% by 2018.10 Among Black patients the percent meeting screening guidelines increased from 48% in 2008 to 67% in 2018, while among White patients the percent increased from 53% to 67%.10 Compared to cancer screening for breast, cervical, and prostate cancer, colorectal cancer was the only screening that increased in use between 2000 through 2015.11
While overall screening rates for colorectal cancer patients are improving, there are still specific populations of Black patients that fail to receive appropriate screening and remain at elevated risk. Notably in 2018, data from the NHIS show that only 34% of the uninsured population is up-to-date with age-appropriate colorectal cancer screening.10 Data from the Southern Community Cohort Study (SCCS) reports further screening inequities. The SCCS included 47,596 patients between 2002–2009 with the majority of patients receiving care in federally supported community health centers in southeastern United States. The participants included 68% who were Black and 55% with annual household income <$15,000. The study showed that in this disadvantaged group of patients there were significantly lower rates of any colorectal cancer screening in Black (34%) compared to White patients (40%).12 Data from the same cohort has shown that Black patients with increased risk due to a first degree relative history of colorectal cancer are less likely to undergo high risk age-appropriate or interval specific screening protocols.13 Black patients are also more likely to undergo endoscopy by lower quality providers with lower Polyp Detection Rates (PDR) and are at higher risk for the development of interval cancers.14
Many factors contribute to delayed screening. Key access issues include patient-related factors such as lack of knowledge, perceived benefits, and perceived susceptibility in addition to barriers in costs, time, availability, and transportation.7,15 Focus groups among Black patients who have undergone colonoscopy screening shows that facilitators of successful screening include social/community support, religion, and having a recommendation for screening from their provider.16 In a study of patients with non-adherence to colorectal screening guidelines in California, 19% of participants reported non-adherence due lack of physician recommendation, and Black patients had a 1.5 times higher odds of lack of physician recommendation as the reason for non-adherence compared to White patients.17
While increased screening can be a viable means to reduce incidence and mortality in colorectal cancer, it will not explain all these disparities. In a simulation of outcomes in colorectal cancer between 1975–2007 where screening patterns for White patients were applied to Black patients, it was estimated that 42% of the disparity in colorectal cancer incidence and 19% of the disparity in mortality can be explained by differences in screening.18 Following detection of abnormal endoscopic findings, Black patients struggle more than White patients to achieve appropriate follow up care.19 These breakdowns in care from early detection to treatment can be directly attributable to delays in care with more advanced stage presentation. Furthermore, following treatment for colorectal cancer Black patients are 38% less likely to have appropriate surveillance screening colonoscopy interval at 1,3, or 5 years.20
Disparities in Stage at Presentation
Stage at presentation has been shown to be one of the largest factors contributing to racial differences in mortality.21 The National Cancer Institute Black/White Cancer Survival Study longitudinally followed patients diagnosed with colon cancer between years 1985–1986 to determine what features might explain the Black/White mortality disparity.22 The authors found a 50% higher mortality among Blacks compared to Whites at 5-year follow up, and adjustment for stage at presentation reduced this to a 20% difference in mortality (60% reduction).23 Further adjustment for socioeconomic factors did not further reduce the mortality difference suggesting that socioeconomic factors were a significant mediator for the stage difference. In this study Black/White mortality disparities were largely driven by mortality differences for stage II/III disease.23 Later studies have suggested that disparities in stage IV disease mortality rates contribute up to 60% of overall Black/white mortality differences.24 Thus, both higher stage at presentation and higher stage specific mortality contribute to overall mortality differences.25 Timely screening remains an important mechanism to prevent late stage presentation and its impact on mortality.26
Disparities in Treatment
Differences in stage specific survival are less likely to explained by screening strategies, and studies have increasingly focused on treatment differences between populations. In an analysis of factors contributing to disparities in colorectal cancer mortality in the California Cancer Registry between 1993–2004, the addition of treatment (surgery, chemotherapy, radiation) significantly reduced the Black-White differences in mortality even after controlling for demographics and stage at presentation.27 The impact of treatment on mortality disparities may be due to the effectiveness of treatment, the receipt of treatment, the timeliness of treatment, and/or the quality of treatment received.
In the controlled setting of clinical trials, the effectiveness of treatment for both Black and White patients with colorectal patients has been supported. For example, for patients with advanced stage colorectal cancer who were treated in the Southwest Oncology Group randomized control trial of the addition of cetuximab or bevacizumab to 5-flourouracil (5-FU), oxaliplatin, and leucovorin (FOLFOX) or 5-FU, irinotecan, and leucovorin (FOLFIRI) chemotherapy, there were no significant differences between Black and White patients in either overall survival at 7 years or response to treatment when matched on trial covariates.28 Similar results have been found in earlier trials of 5-FU in early stage colon cancer.29 However, analysis of pooled data from 12 clinical trials of standardized adjuvant chemotherapy between 1977–2002 for early stage colon cancer in North America found that Black patients had worse overall and recurrence-free survival yet similar timing to recurrence between races.30 These findings suggest that the effectiveness of the chemotherapy was likely similar among groups given similar time to recurrence. However, the authors suggest that the differences in long term survival may be more attributed to other healthcare disparities impacting mortality outside of the clinical trial (i.e. impact of social determinants of health and ability to receive salvage therapy).30
Patients must first receive therapy for it to be effective, and several studies have revealed that Black patients are less likely to undergo surgery for resectable cancers, receive adjuvant chemotherapy, or undergo radiation for rectal cancer.15,31–33 While patient refusal has been identified as one reason for these disparities, this represents a small proportion of the reasons behind these differences and there are many factors that contribute to why a patient may refuse or not seek therapy.34 The explanation behind differences in receipt of therapy is more likely related to a complex interplay of patient comorbidities, social determinants of health, and systemic level issues including structural racism.
The quality of therapy significantly varies between Black and White patients. Black patients are more likely to receive their treatment at minority serving hospitals that are associated with lower rates of standard therapy delivery and higher mortality compared to non-minority serving hospitals.35 For rectal cancer, Black patients have historically been less likely to undergo surgery with sphincter preservation surgery based on SEER data from 1988–199926, and are more likely to have rectal cancer surgery from lower volume surgeons.32 Analysis from the National Cancer Data Base (NCDB) from years 1998–2006 showed that Black patients have higher rates of positive circumferential resection margins on rectal cancer specimens.34 Multivariable models of colorectal cancer mortality show significant reductions in racial disparities when controlling for additional structural measures including hospital and provider characteristics and process measures such as lymph node harvest.32 More recent data using data from 2006–2007 suggest the rate of concordant care among Black patients has now significantly improved over White patients (77% vs 73% in white patients), however Black patients still had higher recurrence rates and mortality in 5-year follow up.36
Treatment differences may only explain a small portion of the differences in colorectal mortality by race. When Black and White colon cancer patients in the SEER database between years 1998–2009 were matched sequentially based on patient, tumor, and treatment factors, treatment explained only 0.1% of the 8.3% difference in 5-year survival seen between Black and White races.37 When examining colon and rectal cancer patients in the NCDB database for years 2004–2012, a 40% increased hazard of 5-year survival among Black patients compared to White patients was reduced to 7% after controlling for patient demographics, comorbidities, insurance, and tumor characteristics.33 The addition of treatment factors only reduced the ratio of increased hazard for 5-year mortality to 6%. These findings suggest that while promoting equal treatment among races is essential for equitable care, we must look at additional factors outside of treatment to address the mortality disparity.
Factors Underlying Disparities in Colorectal Cancer
Race represents a social construct, and we must seek to understand the complex milieu of variables that race is serving as a surrogate for.38 Potential factors that may be contributing to racial disparities in colorectal cancer mortality include patient, provider, healthcare system, and policy-level variables as shown in Figure 3. Social determinants of health are known major contributor to racial disparities in colorectal cancer mortality.25 Social determinants of health include not only socioeconomic factors such as a person’s education, income, and health insurance but also other factors influencing health such as housing, transportation, and residential area.38 When analyzing data from SEER-Medicare linked claims data between 1992–2002, area based measures of poverty and rurality were the single most explanatory factors for racial disparities in colorectal cancer mortality compared to the individual contribution of patient comorbidities, tumor characteristics, or treatment.39 For colorectal cancers in the California Registry between 2000–2013, the top three contributors to racial disparities were stage of cancer, marital status, and a composite measure of neighborhood socioeconomic status.3
Figure 3.
Potential patient, provider/health-system, and public policy factors that may be contributing to healthcare disparities in colorectal cancer.
Geographic disparities in colorectal cancer mortality exist and many contribute to or worsen racial differences in mortality. Variation in colorectal mortality across states in 2018 is illustrated in Figure 4, and an example of within-state variation of colorectal mortality is shown in Figure 5. Even the neighborhood in which a Black individual lives has been associated with their risk of presenting at advanced stage colorectal cancer.40 Specifically, as the level of segregation increases, the rate of presenting at a late stage increases and as well as their risk of mortality.40
Figure 4.
Age-adjusted mortality rates for colorectal cancer between 2014–2018 within the United States. From https://seer.cancer.gov/explorer
Figure 5.
Age-adjusted mortality rates for colorectal cancer between 2014–2018 for the State of Alabama. From https://seer.cancer.gov/explorer Data from counties with counts fewer than 16 is suppressed for data stability and confidentiality.
Up to half of the racial difference in mortality from colorectal cancer has been estimated to be attributable to health insurance, however mixed findings have been shown in equal access health systems. In the Military Health System, Black colon cancer patients had no difference in time to treatment compared to White patients, though Black patients were still more often diagnosed with a later stage cancer.41 Among colorectal cancer patients identified in 6 separate integrated health systems, Black patients were still more likely to present at a later stage and had higher associated mortality. This difference was impacted by the receipt of surgical therapy even in this equal access health system.42 To eliminate healthcare disparities, access must be viewed beyond insurance status.
Other more modifiable patient factors impacting colorectal cancer incidence and mortality include health behaviors such as diet, sedentary lifestyle and smoking.43,44 In a study of National Institutes of Health-AARP Diet and Health data linked to state tumor registry data from 1995–1996 found that health behaviors including physical activity, smoking, and diet explained 36% of the association between neighborhood socioeconomic status and the incidence of colorectal cancers.45 Additionally, patient activation or the ability for an individual to actively promote their own health care has been shown to play an important role in colorectal cancer screening.46
Beyond health behaviors, a patient’s health attitudes, beliefs, and knowledge are important contributors to their decisions to seek care for preventative measures or treatment.43 Fear, anxiety, and knowledge can present significant barriers to colorectal cancer screening.7 Fatalistic beliefs are those in which one believes that their outcome from a condition is certain and that no intervenable action would impact that outcome. Data from the Cancer Care Outcomes and Research Surveillance (CanCORS) multicenter prospective study shows that fatalistic beliefs among patients with colorectal cancer are associated with higher risk of advanced stage at diagnosis.47
Genetic differences and tumor biology are less likely important mediators of racial disparities in colorectal cancer outcomes however some studies have reported biologic differences based on race. For example, more accelerated epigenetic aging has been observed in colorectal cancers of young-onset Black patients, and higher rates of KRAS mutations and lower rates of BRAF mutations have been observed in node positive cancers.48,49
Providers and healthcare systems also play an important role in racial disparities in colorectal cancer through their impact on access and health promotion. Provider recommendation for colorectal cancer screening has been shown to be a barrier to achieving successful colorectal cancer screening, and the method of communication and cultural sensitivity in which these recommendations are delivered may influence whether patients adopt the recommendation.16,43 Healthcare systems and providers are key drivers that may contribute to any structural racism that could influence racial disparities in colorectal cancer mortality. For example, physicians may exhibit implicit bias for providing colonoscopy screening recommendations viewing some patients as less likely to adopt their recommendation.17 An example of structural racism in a health system may be an endoscopy center that is strategically placed for reimbursement purposes as opposed to patient need. Evaluation of potential structural racism in medicine and how it contributes to colorectal cancer outcomes is necessary to eliminate disparities in colorectal cancer.
Discussion
Potential Interventions to Address Disparities in Colorectal cancer
Given the various factors influencing racial disparities in colorectal cancer care, multilevel interventions will be necessary to address racial disparities in colorectal cancer incidence and mortality. An integrated approach with individual elements directed at the patient, provider, healthcare system, and policy-level will be necessary.44 For example, to increase screening measures, specific efforts may be directed toward increasing demand and access from a community perspective and improving access and direction from the provider front.44
One example of an intervention that could impact disparities in multiple phases of colorectal cancer care is patient navigation. Patient navigation may be used to promote and guide patients to effective colorectal screening practices, steering patients from detection to high quality care in a timely fashion, and providing information throughout the treatment process and post-treatment surveillance.7,43,50,51 A randomized trial to promote colorectal cancer screening among patients not meeting recommendations in community health centers showed that the provision of patient navigation was associated with significantly higher rates of screening compared to usual care especially among patients of color: 40% of patients achieved successful screening at one year post intervention compared to 17% with usual care.50
Other innovative mechanisms to address racial disparities in colorectal cancer include addressing barriers in health literacy and cultural competency.43,52 Health literacy, or a patient’s ability to obtain, interpret, and act on health related information, had been shown to be an important predictor of receipt of colonoscopy screening.52 The development of health literacy sensitive interventions has shown to improve success of colorectal screening programs.53 Improvements in physician strategies to effectively communicate to patients with low health literacy may also help break racial barriers. Interventions to improve provider based cultural competency can improve provider’s ability deal with various social cultures, psychosocial behaviors, and beliefs including fear, isolation, fatalism, trust and respect.43
Public policy provides another important avenue to impact racial disparities in colorectal cancer mortality. Prior to the 2021 United States Preventive Task Force (USPTF) update for the recommended screening age for colorectal cancer to asymptomatic patients with ages > 45, there were several calls to reduce screening age to >45 for Black patients given the historic increased incidence in younger Black adults.43,54 Thus this new USPTF policy may provide a new avenue for physician to promote effective screening and decrease disparities in colorectal cancer incidence and mortality. Calls for other policy changes have been made centered around payments for screening efforts.55 Specifically, recommendations have been made to congress to eliminate unexpected cost-sharing that patients become responsible for when polyps are identified during screening procedures requiring diagnostic/pathology review and procedure type changes.55
The Delaware Cancer Consortium provides an example of an effective multilevel intervention designed to address healthcare disparities in colorectal cancer with highly effective results.56 In response to high cancer incidence and mortality, the Delaware legislature adopted recommendations that provided 1) coverage for uninsured patients to undergo colonoscopic screening for colorectal cancer, 2) establishment of a patient navigator system to facilitate screening efforts and subsequent cancer care, 3) coverage for 2 years of cancer care for effected individuals. The Black patient population was specifically targeted through outreach in community programs. Overall screening rates increased from 57% in 2001 to 74% in 2009 and for Black patients screening numbers increased from 48% to 74%. The percentage of Black patients presenting with late stage disease significantly decreased. The three-year average Black/White mortality ratio for colorectal cancer decreased from 1.63 to 1.06. Thus, by addressing financial and social barriers, significant strides towards equity in colorectal cancer outcomes are possible.
Summary
Healthcare disparities in colorectal cancer are avoidable, unnecessary, and unjust. Black patients represent a major population who suffer from these disparities, which manifests in many forms.4 The mortality differences in colorectal cancer experienced by Black patients is driven by an accumulation of disparities in prevention/screening, detection, treatment, and post-treatment care. The underlying reasons for these differences may be attributable to patient, provider, health-system, and policy-level reasons. Future multilevel interventions to drive change on each of these levels provide the opportunity to make significant reductions in such healthcare disparities.
Key Points:
Healthcare disparities in colorectal cancer continue to exist
Disparities in colorectal cancer mortality may be attributable to gaps in prevention, detection, stage at presentation, treatment, and/or post-treatment surveillance.
Underlying reasons for racial disparities in colorectal cancer can be tied to patient, provider, healthcare system, and policy-level factors.
Interventions to address disparities in colorectal cancer need to be multilevel.
Synopsis:
Healthcare disparities are defined as health differences between groups that are avoidable, unnecessary, and unjust. Racial disparities in colorectal cancer mortality, particularly for Black patients, are well-described. Disparities in preventative measures, early detection, effective treatment, and post-treatment services contribute to these differences. Underlying these issues are patient, provider, healthcare system, and policy-level factors that lead to these disparities. Multilevel interventions designed to address each level of care can provide an effective means to mitigate these disparities.
Clinics Care Points.
Racial disparities in colorectal cancer mortality exist -- disparities in prevention, detection, treatment, and post-treatment care contribute to these differences.
Physician recommendation for age appropriate colorectal screening is an important mechanism to ensure colorectal cancer screening in minority populations.
Patient navigators represent one effective mechanism to maximize effective colorectal cancer screening and subsequent treatment.
Abbreviation/Glossary list:
- NHW
Non-Hispanic White
- SEER
Surveillance, Epidemiology, and End Results Program
- NHIS
National Health Interview Study
Footnotes
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Disclosure statement: The authors have nothing to disclose.
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