Racial Disparities in Inflammatory Bowel Disease

Inflammatory bowel disease (IBD) is a group of digestive diseases that includes Crohn’s disease, ulcerative colitis, and indeterminate colitis. These diseases can develop in people from any racial background. However, there has been a lack of research and understanding of how IBD affects minority populations.

When the different forms of IBD were originally defined many years ago, they were erroneously thought of as a disease that only affects White people, and specifically those of Jewish ancestry. This myth has led to significant difficulties for people in minority groups in receiving diagnosis and treatment.

Disparities in healthcare access and utilization affect minority groups in the United States, including those people who live with forms of IBD.

A Rise in IBD Around the World

IBD was previously thought of as a Western disease, affecting those who live in the United States, Canada, Australia, and Europe. However, other parts of the world are starting to see an increase in people being diagnosed with IBD. While IBD is less common in some areas of the world than it is in Western cultures, it is becoming a “global disease.”

In the United States, minority groups are expected to comprise 57% of the population by the year 2060. However, health disparities continue to be a significant problem for so-called minority populations, particularly when it comes to chronic illness.

People in some minority groups may have a higher rate of undiagnosed chronic illness. Some of this may be from incorrect or outdated beliefs that minority groups don’t develop certain types of chronic illnesses.

Other factors are the lack of access to health care in general, such as that caused by a lack of insurance, poor communication between physicians and patients (such as those caused by a language barrier), and inconsistent guidelines regarding which groups of patients should be screened for disease and when.

Some of the data that’s frequently used to understand IBD in the United States comes from Olmstead County, Minnesota, where the prevalence of the disease is high.

However, the percentage of Black and Hispanic residents in Olmstead County (6.9% Black, 5.2% Hispanic) is significantly lower than it is in the general population of the United States (13.4% Black, 18.5% Hispanic).

Further, “minority groups” encompass a wide range of ethnic and cultural backgrounds. Diversity within some minority patient populations may also not be accurately accounted for in research.

Disparities in IBD Treatment

There has been some research into how IBD affects diverse populations. One review study included 40 published research articles focused on IBD, race or ethnicity, socioeconomic status, healthcare delivery, and healthcare effectiveness.

The goal was to identify if there were any differences in how IBD is treated among different groups of patients. After reviewing all of the included studies, the researchers found there were disparities in several areas of IBD care.

Medical Therapy

There has been some speculation there may be different forms of IBD, some more severe than others, which develop more often in certain populations. Not every study included in this big analysis collected data on disease severity. But for the seven studies that did, the rates of disease severity were “generally similar" when comparing African American and White patients.

Even so, White patients in six of the seven studies included were more likely to receive treatment with an immunomodulator and Remicade than African American patients were. One study, which included a higher rate of African American patients who had severe disease, found that the reverse was true.

Surgery

In one study, information was collected on patients with ulcerative colitis between 1998 and 2003. The results showed that African American and Hispanic patients were 54% and 26% less likely to receive treatment with a colectomy (surgery to remove the large intestine and part or all of the rectum) than White patients.

Information collected from the Nationwide Inpatient Sample (a hospital database) showed similar results for patients with Crohn’s disease. Patients of African American, Hispanic, and Asian descent were 32%, 30%, and 69% less likely to have resection surgery to treat their disease than White patients. Having Medicaid was also linked to a 48% decreased rate of resection surgery.

Medication Adherence

Being able to obtain and take medications as they are prescribed by a physician is often referred to as adherence. In IBD, medications prescribed can be taken orally, by injection, by infusion, or topically (such as through an enema).

In this meta-analysis, there were just four studies that addressed the topic of patients with IBD receiving their medications as prescribed and on schedule. There were differences in adherence found between racial groups.

One study showed African Americans were 76% less likely to be receiving medications as they were prescribed. Some of the factors in different studies that were shown to be connected with improved adherence were trusting a physician, being older, being employed, and being married.

Disease Knowledge

Understanding IBD, including how it is chronic in nature and the importance of regular treatment, is an important part of patients being able to manage their disease. There has not been much research into the differences that racial background may have on a patient’s knowledge about IBD.

Of the research that has been done, African American and Hispanic patients had lower levels of knowledge about IBD than White patients. African Americans also were more likely to report that IBD was “intrusive" in their life.

Clinical Trials

A lack of diversity in the patients included in research studies is well known and documented in many disease areas. In IBD, it was found that most studies looking at race-related issues did include African American patients (95%), but Hispanic and Asian participants were part of the research only 33% and 24% of the time, respectively.

The authors drew several conclusions about African American patients when compared to White patients with IBD, including that this group:

• Receives different surgical care than White patients
• Probably receives different medical care than White patients
• Has more challenges related to affording health care
• Has fewer touchpoints with primary care physicians and gastroenterologists
• Has higher rates of leaving the hospital against medical advice
• Experiences a greater impact from IBD on employment
• Has a lower rate of adherence to medications

The Prevalence of IBD in Minority Groups

There is a pervasive and harmful misconception that IBD does not affect people of different ethnic and cultural backgrounds. A study that used data from the National Health Interview Survey looked at the rate of IBD diagnosed in adults in the United States.

The researchers found there was a lower prevalence of IBD among minority groups when compared to White people. However, IBD is a common disease in the developed world, and while it may be less prevalent in certain minority groups, it does still occur.

In addition, non-Hispanic Black people had higher rates of hospitalizations and of mortality connected to IBD than did non-Hispanic White people. This wasn’t the case with other minority groups.

The researchers involved in this study noted that this outcome disparity could be a result of socioeconomic status, but that there may also be an underlying biological reason for it that is not yet understood. It’s thought that IBD in non-Hispanic Black people may have different characteristics than IBD in White people.

For example, some research has found that African American patients are more likely to have Crohn’s disease that affects the perianal area (the skin surrounding the anus). This could include having complications such as skin tags, anal fissures, perianal abscesses, or perianal fistulas. There is a need for more research in this area.

Another outcome in this study was how often people in the non-Hispanic Black group used or received care for their IBD. When compared to other groups, this group of patients had a lower use of gastroenterology care.

They were also prescribed immunomodulator medications and biologics less often. This was true even when steroids were being prescribed for more than three months. Steroid use is important, because it’s now understood that these medications should only be used for short periods of time, until a safer long-term medication can be prescribed.

The authors put all of these factors together as a picture of why, overall, care is different in this group than it is in other racial groups with IBD.

Children With IBD

IBD tends to be a disease of young people, with most people being diagnosed under the age of 35 (a second, smaller group are diagnosed later in life). This means that children and teenagers may be diagnosed with a form of IBD and carry it into adulthood and throughout their lifetime.

In recent years there has been a greater focus placed on IBD in those diagnosed as children, as researchers understand more about how the disease affects the lives of younger people differently.

One study of 4,377 pediatric patients used information from the Pediatric Health Information System, which takes in data from 52 children’s hospitals. It was found that Black children were worse off in terms of their Crohn’s disease than White children in several different areas.

Black children with IBD had a higher probability of being readmitted to the hospital after being discharged than did White children. The hospital stays for Black children were also longer and occurred more frequently.  

In addition, a vitamin D deficiency, anemia, and perianal disease (which may be connected to a more severe disease course) were more common in Black children. Perianal procedures, endoscopies, and transfusions of blood products were needed more often in Black pediatric patients than in their White peers.

The authors of the study point out that IBD might have a different course in Black children than it does in White children. However, Black children were found to be older than White children at first admittance to the hospital.

This could mean that there are delays in seeing a doctor for symptoms of IBD because of financial or social hardships. However, the authors also point out that these are difficult ideas to study, so it’s not yet clearly understood why the differences occur.

One Study Showing A Lack of Disparities in Treatment

A large analysis of IBD patients was done using data from the National Ambulatory Medical Care Survey (NAMCS) and the National Hospital Ambulatory Medical Care Survey (NHAMCS) between the years of 1998 and 2010.

The NAMCS is a database that collects data on visits to doctors in private (non-federal) practice. The NHAMCS collects data on ambulatory services in hospital emergency and outpatient departments and other locations with ambulatory surgery.

This study found there were more than 26 million doctor or hospital visits for the care of IBD in the United States during this period. The authors of the study looked for any associations between race, ethnicity, socioeconomic status, and the medications used to treat IBD.

While the use of immunomodulator and biologic medications increased during the years included in the study, there were no differences found in how they were prescribed across racial groups.

Patients on Medicaid were more likely to be prescribed immunomodulators than those who had private insurance, but there weren’t any differences in how often they were prescribed, regardless of race.

A Word From Verywell

Adjusting the way the medical community interacts with minority patients is a huge hurdle. Certain diseases and conditions are thought of as only affecting a narrow band of people. However, it has been shown that minority groups do experience IBD.

Yet minority patients are sometimes told that they “can’t have” IBD because of this persistent misconception. It often doesn’t help that advocacy groups and the lay press have been slow to highlight the stories of minorities living with a form of IBD.

While patients of varying ethnic and diversity groups are creating their own spaces and telling their own stories instead of relying on traditional media sources, it's clear more study is needed to understand these disparities. Even now, with incomplete data, however, we can start dismantling them.

How to do that is less clear, because research can show us that people of Black, Hispanic, Native American, and Asian descent do develop IBD, but it can’t yet tell us how to ensure they receive the same care White people do.

The IBD community can start by recognizing and telling the stories of minority patients and including those groups when developing educational materials and programs.