In recent months, we have seen how society has shone a spotlight on racial injustices throughout the United States. For those of us who work in healthcare settings, we’ve likely seen the imbalance in care among specific racial and ethnic demographics play out time and time again. These health disparities have a profound impact both on the quality and quantity of care that patients receive, with proven impact on patient outcomes.
In a 2016 paper, Adler and colleagues defined health disparities as “differences in health that are avoidable and unjust.”1 In rheumatology, there are substantial racial and ethnic health disparities in the burden of disease as well as overall morbidity and mortality, with patients of color consistently having worse health outcomes. For example, one 2019 study showed that Black patients with systemic lupus erythematosus (SLE) were more likely to have more severe disease, as well as higher rates of mortality, compared to White patients. They were also found to die at a younger average age.2 In a 2011 study of patients with rheumatoid arthritis, Black and Hispanic-Latino patients were both found to have greater disease activity and lower function compared to White patients.3 Other studies have shown that Black patients are underrepresented in clinical trials, have more comorbidities, and lack easy access to subspecialty care.4 Clearly then, while advances in treatments for rheumatic diseases have lengthened the lifespan of many of our patients, racial- and ethnicity-based health disparities persist.5,6
There are numerous drivers of health disparities in the United States. These include socioeconomic factors such as lower education and income, which negatively affect healthcare access and quality. Poor health outcomes are also related to chronic stress in persons of color who often have limited resources when faced with unexpected life events such as job loss or major illness.1 Structural systems and policies that promote health inequities, which may not be self-evident to clinicians who are not racial or ethnic minorities, also are thought to play a role.5 It’s not as simple as a “Fix this one thing and everything will be OK” situation. There are numerous layers of issues that need to be explored with patients and carefully addressed.
Undoubtedly, the recent burden of the COVID-19 pandemic on communities of color has major implications for our approach to patient care. A recent article in Arthritis & Rheumatology shined a light on the pandemic’s crushing impact and urged providers and researchers within rheumatology to take action to address widening health disparities.4 A major takeaway from this article was that we must have a broad net for capturing sociodemographic data from patients so we can understand the complex situations that underlie health disparities.
Unlike many other specialties that see patients come and go as emergent health conditions arise and clear, rheumatology practices often establish long-term relationships with their patients due to the chronic nature of their disease.
“We must proactively direct patients toward community resources and other networks to support those who need assistance.”
We know how to have hard conversations with our patients. Studies have shown that Black and Hispanic patients, along with patients with lower levels of education, are less likely than other groups to have advanced directives in place in case of unforeseen circumstances.7 This can be one area where providers can make an immediate and profound impact amidst the COVID-19 pandemic.4
One of my most memorable patient encounters as a researcher was with a young, Black SLE patient who had been lost to follow-up for several years and then suddenly appeared back in our clinic with severe disease progression. Her life circumstances were such that she could not afford critical medications and was now at risk for renal failure. To see a young woman in her 20s facing a possible kidney transplant, especially knowing how preventable her complications could have been, was both sobering and sad. Patients who live in unstable conditions related to food or housing insecurity, lack reliable Internet access for telehealth visits, or are unable to pay for healthcare services due to unemployment need clinicians who can engage in discussions about how these conditions may be impacting their health. We must proactively direct patients toward community resources and other networks to support those who need assistance.4
One nurse I know who works primarily with medically underserved populations told me that her role is to be “the door” to help patients find the help they need. I liked that. Our patients shouldn’t have to find the hidden key to access quality care. We all need to do a better job showing them how to unlock opportunities to overcome the many health disparity barriers in their way. By increasing our awareness of the core issues at play, we can be agents of change in promoting health equity for our patients of color.
References
1. Adler N, Cutler DM, Fielding JE, et al. Addressing social determinants of health and health disparities: A vital direction for health and health care. Available at nam.edu/wp-content/uploads/2016/09/Addressing-Social-Determinants-of-Health-and-Health-Disparities.pdf. Accessed July 1, 2020.
2. Drenkard C, Lim SS. Update on lupus epidemiology: advancing health disparities research through the study of minority populations. Curr Opin Rheumatol. 2019;31(6):689-696.
3. Barton JL, Trupin L, Schillinger D, et al. Racial and ethnic disparities in disease activity and function among persons with rheumatoid arthritis from university-affiliated clinics. Arthritis Care Res (Hoboken). 2011;63(9):1238-1246.
4. Feldman CH, Ramsey-Goldman R. Widening disparities among patients with rheumatic diseases in the COVID-19 era: An urgent call to action. Arthritis Rheumatol. 2020. [Epub ahead of print].
5. Nierengarten MB. Racial disparities in rheumatology: What are we doing about it? Available online at www.the-rheumatologist.org/article/racialdisparities-in-rheumatology-what-are-we-doing-about-it/. Accessed July 1, 2020.
6. Bailey ZD, Krieger N, Agénor M, Graves J, Linos N, Bassett MT. Structural racism and health inequities in the USA: evidence and interventions. Lancet. 2017;389(10077):1453-1463.
7. Harrison KL, Adrion ER, Ritchie CS, Sudore RL, Smith AK.
AUTHOR PROFILE: Laura P. Kimble, PhD, RN, FNP-C, CNE, FAHA, FAAN is a Clinical Professor and the Assistant Dean of Clinical Advancement at Emory University’s School of Nursing, and a research chair on the Rheumatology Nurses Society Board of Directors.
Earn 2.75 hours of continuing nursing contact hours, including 2.0 pharmacotherapeutic contact hours, by completing the education in our Rheumatology Nurse Practice Course: Doing the Most for Our Patients with Rheumatoid Arthritis