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Breast Cancer: Health Literacy, Disparities in Care, and the Impact of COVID-19 on Telehealth

2022 Breast Cancer Guide to Patient Support Services

Several factors contribute to poor outcomes in breast cancer care, including low health literacy, persistent socioeconomic and racial disparities despite improvements over the past decades, and the impact of the COVID-19 pandemic.

Health Literacy and Effective Communication

As the medical field grows increasingly complex and services continue to move to the outpatient setting, a focus on health literacy becomes more and more important.1 Nurses are critical to the effective delivery of patient education, but when a patient’s health literacy is not assessed prior to the transmission of critical cancer information, effective communication can be lost.1 Literacy is defined by the World Health Organization as the capacity to read, write, listen, comprehend, and speak a language, whereas health literacy includes those basic skills as well as the ability to receive, process, and understand health information.1 Patients need to know where to get key health information, and once they get it, they need to know how to analyze it and use it to make informed decisions.1

Cancer incidence is expected to reach approximately 2.1 million people in the United States by 2030.2 Studies show that clear and meaningful communication between providers and patients may be lacking.2 When healthcare practitioners communicate clearly and frequently, some patients report better levels of satisfaction with care and a sense of control; others are more likely to adhere to treatment and follow through with recommendations.2 Verbal conversations are the most common way physicians pass information to patients, yet more than 75% of what is said is forgotten almost immediately, and only half of what is remembered is accurate.2 Patients are more likely to participate in preventive and detection activities and to complete treatment when information is given in a way that is both understandable and scientifically accurate.2

Approximately 12% of adults in the United States have proficient health literacy, putting more than 300 million people at risk of miscommunication with health providers, failure to follow medication and discharge instructions, and being unable to fully participate in making informed decisions about their care.2 A lack of health knowledge has a domino effect and leads to poor decision-making, poorly managed chronic illnesses, increased use of emergency services, more avoidable hospital admissions, and as a result, higher healthcare costs.1 The patient navigator is an important communication link in cancer care; as part of the interdisciplinary team supporting the patient, the navigator can help close the gap in health literacy by clarifying information provided by doctors and nurses and directing the patient and caregivers through the cancer journey.2

The Agency for Healthcare Research and Quality and the Institute for Healthcare Improvement have advised that the teach-back method, a technique for checking patients’ grasp of health information, be implemented for every patient at every appointment.2 Research has shown that most patients are unaware of their lack of comprehension, and a significant amount of medical information is lost almost immediately.2 Patient participation is a cornerstone of the National Quality Strategy, and it is especially important in oncology care because cancer treatment is complex and entails joint decision-making between patients and healthcare providers.2 Employing the teach-back method to ensure that patients understand what their healthcare professionals are sharing with them is one strategy for delivering patient education to encourage patient engagement.2

Asking open-ended questions and encouraging patients to respond in their own terms are ways of gauging patient understanding. When teaching anything nonverbal, using the teach-back approach to verify understanding is advised.1 Maintain a safe and efficient care environment by documenting and reassessing communication on a regular basis, as patient requirements and barriers change over time.1 Studies have shown that the teach-back method is an effective method for reinforcing or confirming patient education.2 Routinely screening patients for individual health literacy has not been demonstrated to improve results and is not advised.2 Healthcare practitioners must take greater responsibility for adopting health literacy techniques such as teach-back to ensure that patients obtain information that is easily accessible, comprehensible, and usable.2 Many professional groups advise employing universal health literacy precautions to ensure that all patients receive intelligible and accessible information, regardless of their literacy or educational skills.2

Disparities in Breast Cancer Care

According to the American Association for Cancer Research, cancer health disparities remain an issue in the United States, despite considerable progress.3 African-American women have a 39% higher risk of dying from breast cancer compared with their white counterparts.3 Racial and ethnic minorities, as well as other marginalized communities, are less likely to obtain the recommended standard of care for their cancer type and stage.3 Recent studies have demonstrated that racial and ethnic differences in cancer outcomes can be eradicated if all patients have equitable access to standard treatment.3 The lowest breast cancer screening rate of any racial/ethnic group in the United States is among American Indians/Alaska Natives.3 Hurdles to screening have been found, including a lack of access to healthcare, a lack of awareness about cancer risk, mistrust of the healthcare system, and, among Hispanics, having English as a second language.3 The underrepresentation of racial and ethnic minorities in cancer research and clinical trials is also a key contributor to disparities in cancer care.3 African-American and Latina women with breast cancer are almost 30% less likely than white patients to enroll in clinical trials testing treatments for their type of cancer.3

The disparity in overall cancer death rate has decreased from a 33% higher rate among African Americans compared with white patients in 1990 to a 14% higher rate for African Americans in 2016.3 Apparent differences in cancer biology and the genomic basis of cancer onset exist between races and ethnicities, but a lack of understanding of these distinctions limits precision medicine’s promise in these populations.3 Research has shown that African-American women with triple-negative breast cancer have worse outcomes than white women with triple-negative breast cancer.4

Antiracist action on all levels of structural inequality, including individual, institutional, and societal/cultural levels, is needed to reduce cancer inequalities.4 Individuals must take personal responsibility for increasing their understanding of systemic racism and its effects on their patients and communities.4 Individual activities, on the other hand, require institutional backing to have the maximum impact.4

Low-income communities face significant barriers to cancer care, and cancer mortality surpassed that of heart disease in 22 US states in 2014.5 The American Cancer Society hosted “National Hearings on Cancer in the Poor” in 7 cities around the country in 1989.5 The goal of these hearings was to focus on the scope of unmet need among underprivileged patients with cancer, as well as common impediments and ideas for overcoming them.5 Individuals in low-income groups often do not seek care if they cannot afford to pay for charges, and low-income patients and their families often make great personal sacrifices to get and pay for cancer care.5 Many low-income groups regard cancer education initiatives as culturally inappropriate and unnecessary, and these patients often experience greater pain and suffering from their disease than other Americans due to late-stage diagnosis.5

In Harlem, NY, the first patient navigation program was introduced in 1990, which resulted in a large decrease in late-stage breast cancer and a significant increase in early diagnosis among low-income African-American women in this area.5 The scope of that navigation program was then broadened and implemented across the entire healthcare system, and it is now considered an essential aspect of healthcare.5

Complex, integrated, ever-evolving, and sometimes overlapping structures and systems, such as health system factors (health insurance coverage, out-of-pocket costs, access to a usual source of care, lack of care coordination), social factors (socioeconomic status, social support mechanisms), and environmental factors (housing, food insecurity) all influence health outcomes.5 According to the National Cancer Institute, mortality-related breast cancer disparities exist by race/ethnicity.5

Cultural inequities in healthcare remain a problem in the United States.6 Lack of a political voice, inability to communicate in their own language, lack of access, and healthcare staff who do not understand their native language are among the key disparities experienced by Hispanic/Latina women.6 Fear and a lack of insurance are also barriers to equal care for this population.6 Research has shown that breast cancer is the leading cause of cancer death among Hispanic/Latina women in the United States.6 Breast cancer is also the biggest cancer health disparity among Hispanic/Latina women in the United States, and Hispanic/Latina women had lower rates of getting recommended mammograms than white and African-American women.6 The age-adjusted breast cancer incidence rate for black and Hispanic women is 20% to 30% lower than for white women.6 White women are diagnosed with breast cancer at a higher rate than black and Hispanic/Latina women, but Hispanic/Latina women who develop breast cancer are more likely to die from the disease.6

Healthcare providers must be mindful of the cultural divides that exist between the poor and the middle class.7 As a result, while attempting to break down the barriers between America’s “cultures of class,” trust is critical.7 Successful organizations speak the people’s language.7 Speaking the same language about resources and access to resources reduces dissatisfaction among healthcare providers’ networks and builds trust among rural poor patients.7 There is no cultural translation between these successful organizations and the people; the organization is not separate from the lives and communities of its people, but rather is an intrinsic part of them.7

Telemedicine Technology and Disparities in the Time of COVID-19

Many of the groups affected by cancer care disparities are also affected by COVID-19 pandemic disparities.3 The COVID-19 pandemic wreaked havoc on virtually every area of oncology treatment.8 As a result of early-on shelter-in-place measures, as well as continued patient worries of returning to healthcare facilities for new appointments or follow-up care, there has been a sharp decline in cancer diagnoses and screenings.8 Experts expect that there will be a surge in people with advanced cancer in the near future, which could overload a healthcare system that is already overburdened.8

Patients have been skipping screenings and routine care during the COVID-19 epidemic.9 New diagnoses of various types of cancers, including breast cancer, have declined drastically, according to a study published in June 2020.9 In the study, there were more than 2200 new breast cancer diagnoses per week at baseline (January 6, 2019-February 29, 2020); however, by mid-April 2021, that number had dropped to approximately 1000 new diagnoses per week.9

During the COVID-19 crisis, telehealth has become a critical component of healthcare following its rapid adoption by patients and clinicians.10 Several developments and policies enacted during the outbreak are responsible for this increase in adoption, including decisions by the Centers for Medicare & Medicaid Services to allow for increased use of telemedicine services.10 These developments have resulted in a large increase in the number of telehealth visits.10 Although telemedicine is now generally accepted, there are some administrative and practice complications that must be properly managed to ensure long-term effectiveness.10 Although telemedicine expansions appear promising, there are some potential barriers. One important consideration is whether payers will be willing to cover new and existing services.10

Helping patients to comprehend complex health information decreases their risk of negative outcomes while providing an optimal approach to patient-centered care. Disparities in breast cancer care continue to exist across all areas of society, despite some improvements. To help address health disparities, it will be important for healthcare institutions to implement strategies that will increase understanding of systemic racism and its effects on patients and communities. The impact of the COVID-19 pandemic has resulted in a sharp rise in telehealth within oncology centers and a decline in new breast cancer diagnoses and follow-up care. Practices should be put in place to ensure patients are made comfortable with telehealth and its potential benefits to reduce disparities and improve breast cancer care. Improving health literacy, health disparities, and diagnosis and monitoring of patients with breast cancer during the era of telehealth may lead to better health outcomes.


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