Care Disparities in Immune-Mediated Diseases

In her session at the 2022 Interdisciplinary Autoimmune Summit, Lisa Malter, MD reviewed the epidemiology and known differences among races and ethnicities of common immune-mediated conditions before outlining where care disparities and shortfalls currently exist.

Dr Malter stated that currently, “outcomes [in immune-mediated diseases] appear heavily related to disparities in care, cultural and language barriers, care access, health literacy, and financial burden of illness.”

Dr Malter is a professor of medicine at the NYU Grossman School of Medicine, the director of education for NYU IBD Center, and director of the Inflammatory Bowel Disease Clinic at the Bellevue Hospital Center in New York City.

While non-Hispanic African American patients and Hispanic patients often experience a prevalence of psoriasis of about half (1.9% and 1.6%, respectively) that seen in White patients (3.6%), biracial patients have 2 times the rate of hidradenitis suppurativa (HS) of White patients, and African American patients have 3 times that of White  patients. In rosacea, 3.9% of rosacea patients are Hispanic/Latine, while 2.3% are Asian or Pacific Islanders, and 2% are African American. However, Dr Malter added that rosacea is often underdiagnosed in people of color (POC).

There is an increased incidence and prevalence of systemic lupus erythematosus (SLE) among non- White ethnicities and the mortality rates of lupus nephritis (LN) are 6 times greater for African American patients when compared to White patients, and 2 times greater when compared to all other ethnic/racial groups. Dr Malter also noted that patients of low socioeconomic status have worse quality of life (QoL) and outcomes in SLE, while permanent exit from poverty is associated with improved outcomes.

A higher incidence of systemic sclerosis (SSc) is seen among patients of African heritage relative to White patients, and African American patients tend to develop this condition at a younger age when compared to patients in other ethnic groups. African American, Native American, Hispanic, and East Asian patients are more likely to have greater disease severity and end organ damage relative to White patients.

The lowest incidence of rheumatoid arthritis (RA) is seen among East and Southeast Asian, North African, and Middle Eastern patients. For African American and Hispanic patients, there is an association with higher disease activity and a less functional status when compared to a White cohort, even when data was adjusted for social determinants of health.

Inflammatory bowel disease (IBD) has historically been considered a disease of “wealthy countries.” However, Dr Malter stated that prevalence of IBD has been increasing in historically low-incidence areas, such as Central America, Asia, and Africa. Crohn disease (CD) often presents with a different disease course among POC than White patients, and African American patients tend to have worse surgical outcomes than other races. African American, Asian, and Hispanic patients have higher rates of perianal and fistulizing disease, which Dr Malter said may be due to genetics or environmental factors. However, she added, clinicians must consider “social factors that could lead to delayed diagnosis that include access to resources or cultural barriers that may impact diagnosis.” No consistent differences among racial/ethnic groups have been appreciated in ulcerative colitis (UC).

Dr Malter also highlighted that when considering both dermatologic and rheumatic disease,  skin lesions often appear differently on darker skin tones. This can cause a delay in diagnosis or even misdiagnosis for these patients.

Dr Malter stated that certain health behaviors among different racial and ethnic groups may impact the disease course, outcome, or risk of many of these diseases. For example, smoking and alcohol use could affect disease course and outcome in psoriasis, while smoking, poor diet, obesity, and physical inactivity may increase the risk of RA. When considering IBD, Western diets high in sugar and fat and low in fruits and vegetables are associated with development of disease. There is also an increased prevalence of IBD seen in people who have immigrated to a country with a high prevalence of IBD.

Dr Malter stated that therapeutic and clinical trails for many of these conditions are often not inclusive and therefore are not representative of the racial and ethnic makeup of the real-world practice. In 2019, a conference was convened to address this issue specifically within SLE (Increasing Ancestral Diversity in Systemic Lupus Erythematosus Clinical Studies: Overcoming the Barriers) and identified the need for changes at the societal, institutional, research team, referring physician, and patient education levels to create a more equitable representation in SLE trials.

There are several reasons for a lack of diverse patient samples in clinical trials, including investigator bias, patient biases (such as a lack of trust in the health care system), and access to trials. The US Food and Drug Administration has put forth an action plan to increase diversity, which focuses on enrolling patients relevant to race, gender, ethnicity, and age “of the patient that we actually treat in our clinics with the various conditions that are being studied. The action plan is designed to make participation less burdensome, create inclusive outreach for recruitment, and provide cultural competency for trial staff “so they understand what the perspective may be of the varying ethnic and racial groups that we’re trying to get to participate,” including sites with diverse populations, and consider resources to bridge language barriers.

Dr Malter noted that social determinants of health (SDoH) can “lead to downstream health impact.” These include categories such as economic stability; education; social and community context; health and health care; and neighborhoods and the built environment. The relevant SDoH can differ across different immune-mediated diseases. For dermatologic conditions, health literacy, a lack of access to dermatologists, and insurance barriers can all affect a patient’s care. Dr Malter noted, for dermatologic care, “the use of telehealth may be able to help close some of these gaps.”

In rheumatic conditions, “musculoskeletal conditions are the most common cause of work loss” and “reduced health status is the quickest route to poverty.” Other factors that can impact a patient’s care are lack of access to rheumatologists and insurance barriers. When it comes to SLE in particular, Dr Malter stated, “this disease really effectively epitomizes health disparities.” Women and minorities are more commonly affected by SLE, and yet have worse outcomes than male and White counterparts. Additionally, low socioeconomic status is associated with worse outcomes and lower medication adherence, and patients from low socioeconomic status have an increased rate of mortality.

Looking at IBD, health literacy often impacts patient care. According to 2020 study of 9298 Canadian patients with IBD, those with lower socioeconomic status had a higher risk of hospitalization, ICU stay, high dose steroids, and death when compared to patients of higher socioeconomic status. Additionally, a 2021 study found that 1 in 8 patients with IBD experiences food insecurity and lacks social support, which are associated with financial toxicity.

In looking forward at steps to reduce the disparities, Dr Malter emphasized cultural competency, defined as “the ability to effectively incorporate a patient’s values, customs, and beliefs when providing care.” Some areas of a patient’s culture that Dr Malter noted may impact outcomes could include religion, social context, language barriers, and health literacy. Additionally, in a recent systematic review of narrative synthesis of ethnically diverse populations of patients with GI illnesses, 5 themes were highlighted when ethnic minority patients described their experiences of chronic bowel illnesses: disease presentation, health care services, medicine adherence, psychological health, and sociocultural experiences. “Thinking about how different diseases are seen in different racial and ethnic groups,” Dr Malter stated, “is the first step to bridge those gaps that different patient groups experience.”

To enhance cultural competency across all autoimmune diseases, Dr Malter offered the following suggestions: Work to increase diversity in practitioners starting at the trainee level; increase diversity in racial representation in training materials provided to residents and fellows; provide interpreter services for all clinical encounters with patients who may struggle with language barriers; and generate informational resources in more languages and incorporate the patient perspective in those resources.

For dermatologic diseases, Dr Malter also added that race concordance may impact patient experience and outcomes, meaning “an African American patient may do better when they are seeing an African American clinician.”

In rheumatic spaces, Dr Malter highlighted “an increased need for advocacy among patients and physicians in order to create awareness,” as well as the need for education regarding dermatologic presentations of disease across different races.

For IBD, there is the necessity to “appreciate that IBD may be considered a taboo topic,” meaning additional support from the clinical team is essential, with the potential need for psychological services. Dr Malter also stressed the importance of clinician’s awareness that a patient’s diet may be related to cultural beliefs, and it may therefore “be difficult to alter, despite maybe needing to alter it from a disease perspective,” as that could impact social and religious gathering.

Dr Malter concluded by saying, “There is much work to be done to enhance health equity in immune-mediated diseases”

—Allison Casey

Reference:
Malter L. Disparities in care in immune-mediated diseases. Presented at: Interdisciplinary Autoimmune Summit; April 22, 2022. Virtual.