The American Cancer Society states that at the start of 2019, there were 16.9 million cancer survivors in the United States. By 2030, this number is expected to reach 22.1 million individuals. As more people survive cancer, the need for adequate follow-up care is a real priority. What constitutes follow-up care ranges from the ability of a patient to have open and honest discussions with providers on the late and long-term effects of their treatment, as well as post-treatment surveillance for cancer recurrence or new malignancies. Follow-up care is essential in ensuring a good health outcome in the long run.
Unfortunately, follow-up care is not a standardized practice across all patients. There is a stark contrast between those cancer survivors with high socioeconomic status (SES) and compared to those with low incomes. So too, survival rates, the quality of follow-up care, and access to clinical trials are not uniform across all ethnic/race and income groups.
A health disparity defined by age, disability status, race or ethnicity, gender identity, income, and education levels impacts the quality of care and survival and ultimately costs society lost lives and productivity.
This blog post will present an overview of cancer health disparities and how they can impact survival rates and quality of life after cancer.
Health disparities are a phenomenon largely tied to income. Studies have shown that people of high socioeconomic status (i.e. high educational levels, high-income levels, and better job positions) have a healthcare advantage over those of low income, low education, and low-level jobs. This has broad implications for our country’s ability to maintain productivity and competition in the global economy.
Income and Neighborhood
Low incomes are often a factor of lower education and the ability to access higher-paying jobs. In the US, the type of employment determines the neighborhood you reside in and the level of healthcare you receive. Some of the key constraints to quality healthcare for those earning low incomes are:
- Lack of health insurance
- No paid medical leave
- No adequate, affordable transportation to a medical facility
- Long travel distance to a medical facility or screening site
- Poor diets and no access to healthy eating choices
- Less education about healthy lifestyles and disease prevention
- Poor air and water quality that could lead to increased levels of cancerogenic exposure
Unfortunately, the lack of quality healthcare for lower-income earners is strikingly associated with lower life expectancy after cancer treatment. This is especially true for survivors of testicular, breast, and colon cancer, where health outcomes are hinged on follow-up care and cancer surveillance.
It is also true that too many low-income individuals are diagnosed with cancer at later stages of the disease when it is too late for effective treatment. This dramatically increases their risk of death which could have been avoided if their cancer was discovered earlier.
Interestingly, life expectancy for cancer survivors strongly correlates to education levels. This is particularly pronounced between cancer patients who have 12 or fewer years of education and those who have attained more than 12 years of schooling.
A low level of education typically coincides with a lack of awareness of known cancer risk factors, as well as healthcare practices that could prevent or slow the progression of disease. Research suggests that individuals with high levels of education tend to avoid risk factors associated with cancer, such as smoking, physical inactivity, and high fat and calorie diets. Also, higher education is often associated with informed communities that value cancer prevention lifestyles and the need for routine cancer screening.
The only type of cancer where this correlation was not represented was breast cancer. Namely, women of higher SES and education levels usually give birth to their first child later than women with lower SES. Later births, or no childbirths at all, are a known breast cancer risk factor, leading to American and European women of higher SES having a higher risk of developing breast cancer.
However, the correlation between higher SES and breast cancer incidence has been diminishing in recent years due to more frequent screening, and high-quality breast cancer treatment that women of high SES can access.
Race or Ethnicity
While race or ethnicity is not a socioeconomic factor, both race and ethnicity can significantly impact the socioeconomic status of an individual. Minority populations such as Hispanics/Latinos and African Americans are more likely to reside in low-income communities, have a lower educational level, less access to health care coverage, and higher poverty rates than non-Hispanic Whites.
Careful scientific analysis has reported that African Americans have the highest mortality rate from all types of cancer combined across the United States. Even when adjusted for poverty level, members of minority communities such as American Indian/Alaskan Native, African American, and Asian/Pacific Islander have a lower 5-year survival rate compared to non-Hispanic Whites.
The root of these racial and ethnic disparities too often lies in the inherent biases of the healthcare system. These include: :
- Conscious or unconscious bias in healthcare providers
- Institutional racism in the healthcare system
- Lack of trust in the healthcare system by patients from racial or ethnic minority populations
There are many barriers that are responsible for creating healthcare disparities in the United States. We sorted them into three categories.
Structural barriers relate to large geographical distances to a cancer center (that particularly affect the rural population), no access to transportation, and lack of financial support such as health insurance coverage. Of all the ways that health disparities impact survival rates (the quality and availability of cancer care), structural barriers are among the most prevalent ones.
Too often, a clinician’s personal beliefs or biases influence their treatment recommendations. When a physician allows their decision on the cancer treatment method to be impacted by non-clinical factors that aren’t related to comorbidities, stage of the disease, or other prognostic factors, they could inadvertently influence the survival rates of their patients.
The attitudes, confidence, and determination that ultimately drive a patient’s ability to fend for him or herself can strongly impact survival rates. These may include:
- How well a patient can navigate their medical system
- How much they trust conventional medicine treatments
- Whether or not they are optimistic about the ability to survive the disease
- Whether or not they trust healthcare providers who are caring for them
Too often, if a patient has had negative experiences or interactions with their previous providers, they likely are distrustful of conventional medical practitioners or their methods. This is particularly true of patients characterized as low SES. Lack of education and access to healthcare support impede their ability to navigate the complexities of the healthcare system, leading to late diagnoses and poorer survival rates in these minority groups.
Follow-up care post successful cancer treatment and remission is critical to improved quality of life and survival. Follow-up care often involves discussions with providers about the long-term effects of their treatment and key lifestyle changes and testing protocols that they need to follow to diminish their risk of cancer recurrence. A follow-up care conversation is essential in clearing up what recommendations the cancer survivor should follow and who they should turn to for their post-treatment care.
Follow-up Care Discussions
Follow-up care discussions post-cancer treatment are less likely to happen with cancer survivors who are socioeconomically disadvantaged, according to population-based studies. This is especially true for cancer patients who lack college degrees, who are low-income African Americans, who are without or with inadequate health insurance, and those who require psychosocial care (psychological, social, and spiritual care).
The two cancers where both routine screening and follow-up care are essential for improved outcomes is breast and colon cancers. Sadly, those of low SES are not likely to do annual breast and colorectal cancer screening and tend to be unfamiliar with the proper post-treatment surveillance protocols.
Other key components of follow-up cancer care discussion involve mental health and lifestyle changes, including smoking, diet, physical activity, etc,). Unfortunately, for people of low SES, these conversations are too often missed, hence contributing to poor outcomes post-cancer treatment.
Screening for potential new malignancies or cancer recurrence is a crucial part of follow-up care. Cancer survivors need to undergo more frequent screenings than healthy people. The biggest obstacle to surveillance screening for people of low SES is financial. One in three primary care patients is under or uninsured in the United States, which hinders effective follow-up cancer care. For example, women with public health insurance designed for low-income patients are more likely to NOT receive routine mammograms compared to women with private/higher-priced health insurance.
Another real issue is the unwillingness to spend additional money traveling for required follow-up care appointments. In those cases, survivorship care rests on the shoulders of local primary care providers who may not be knowledgeable or experienced enough to treat survivors of certain types of cancer.
Other factors aside from financial ones can create challenges for low SES groups to access proper cancer screening, many of them are intangible and not easy to rectify, such as:
- Low self-efficacy
- Limited knowledge
- Limited proficiency in English
- Low health literacy
- Mistrust in the healthcare system
- Lack of a good source of primary care
Clinical trials are an essential component of medical R&D. Clinical trials are needed to evaluate the efficacy and safety of new cancer treatment. Our ability to evaluate new treatments in human trials directly impact overall cancer survival and mortality rates. Trials with high patient enrollment rates provide faster and more accurate results, increasing our ability to effectively and safely treat disease.
Testing new approaches to cancer treatment has notoriously low participation rates in adults (less than 5%).
Cancer clinical trials in the past have produced the cancer treatments that lead to successful outcomes today. Without these clinical studies, there would be no progress in our war against cancer.
However, the health disparities that are so prevalent in every other segment of cancer treatment are also present with access to cancer treatment trials.
- Financial Barriers
While clinical trials are normally free to patient volunteers, there are other financial barriers that impede patient participation in cancer trials. For example, the patient may not want to spend additional money on hidden costs, such as traveling if the cancer clinic is far away, extra childcare for the duration of the trial, loss of income from missed work.
In the United States, not every hospital offers clinical trials. Non-teaching or university hospitals, especially in low-income neighborhoods, may not have any research programs available for patients who cannot travel. Comprehensive cancer centers that include clinical trial opportunities are simply not equally available for all.
- Language Issues
The language of consent and information forms in a clinical trial is one of the major barriers to participation for individuals of low SES. These forms consistently fail readability checks and are incredibly complex, making it difficult for anyone (let alone the highly educated) to understand. Cancer patients with low education levels are less likely to sign papers they cannot comprehend and more likely to refuse clinical trial participation that could ultimately benefit them and the medical community.
- Overall Health
To enter a clinical trial, a patient must comply with the eligibility requirements such as cancer type and stage. Normally, trials seek patients who are otherwise in overall good health, as determined by routine tests to measure various organ functions before accepting patients into a trial program.
Poor pre-cancer health significantly contributes to a person’s inability to participate in a clinical trial. Low SES populations often ail from a multitude of pre-existing/chronic conditions simply because their lifestyle and environmental exposures do not constitute healthy living. Risks of comorbidity often prevent the underserved populations from accessing and participating in clinical trials that could potentially be life-saving.
- Knowledge, Beliefs, and Culture
A patient might also be reluctant to apply for a cancer trial if they lack knowledge about the potential benefits and risks of the trial, if they simply have negative beliefs about the medical industry, if they are influenced by factors of faith or healthcare providers, or friends and family in the decision-making process. Cultural factors have to be considered when offering follow-up care.
A patient must be referred to a clinical trial by a healthcare provider. There are several reasons why a clinician might not discuss this option with their patient:
- Not having enough time to explain the trial in detail, therefore opting only to mention them to their well-educated patients with cancer.
- Conscious or subconscious decisions about the patient’s willingness to participate in a trial based on non-clinical factors.
- Not knowing if there is a cancer clinical trial available for the patient.
- The patient is not eligible for an available trial due to different clinical factors (such as chronic disease and other comorbidities).
These barriers need to be addressed for underrepresented populations. Our clinical trial system needs a comprehensive mechanism to educate physicians, surgeons, and different specialists on available cancer studies where patients of low SES are not represented.
Public Health Mission
Resolving these disparities in cancer care requires time and concentrated effort. Public health has several areas to focus on to resolve these disparities. These include:
- Gathering data on low-SES patients and survivors to recognize their unique problems and needs.
- Analyzing the psychosocial, economic, and medical consequences of a cancer diagnosis on low-SES patients.
- Deciding on the optimal composition and required training of multidisciplinary health care teams that will effectively support underserved patients and survivors.
- Developing, distributing, and implementing programs based on all available data.
- Processing and analyzing the results of these programs, while guaranteeing their integration into operational systems.
- Developing models for program promotion, as well as planning for their scaling and sustainability.
Examples of such programs include the 1991 National Breast and Cervical Cancer Early Detection Program aimed at low-income women without health insurance and the 1999 Racial and Ethnic Approaches to Community Health (REACH) program for reducing health disparities in six healthcare sectors, including screening for breast and cervical cancer.
While these programs were developed with the best of intentions in mind, they still only reach a fraction of their target population. The majority of clinical trials still only cater to a low percentage of low-SES patients.
One of the essential steps in eliminating challenging socioeconomic disparity factors from cancer care is engaging with communities in a meaningful way to understand how socioeconomic issues factor into their participation in health care programs. So too, opportunities to raise awareness, educate, and motivate communities to take appropriate action are key.
Throughout this entire process, it is vital not to lose sight of different cultural aspects. Racially or ethnically diverse patients will not necessarily respond to treatment recommendations or discussions about follow-up care and clinical trials in a uniform manner. Healthcare providers must be flexible in communication to different communities, while prioritizing personalization of care, rather than forcing a universal approach on every single patient.
Public health should also expand its programs to accommodate different cultures and languages where needed, as cultural and linguistic barriers are often key to reaching high-risk populations where certain behavioral changes may be beneficial to cancer outcomes. Policy changes initiated by private individuals, governments, and nonprofit organizations should ideally work synergistically to overcome social, institutional, and racial inequalities in cancer care.
To impact matching proper treatment solutions for different cancer types, the public should become aware of, and turn to, research campaigns that offer promising results. Please take a look at the campaigns currently underway on our website. If you find one you like, make a donation to speed up the process of discovering a cancer-fighting solution. This can benefit not only your own family but society at large.