Study highlights need for culturally relevant programs to educate Black communities on hepatitis B

Reviewed by Emily Henderson, B.Sc.Oct 12 2020

Hepatitis B disproportionately impacts U.S. Blacks, including African American and Haitian Blacks. Both communities suffer from widespread misinformation and access to care issues that might avert disease detection and prevention, according to a study published in Cancer Causes & Control by researchers at Sylvester Comprehensive Cancer Center at the University of Miami Miller School of Medicine.

The study's findings point to a great need for culturally relevant, community-based interventions that involve and educate Black communities so that they better understand their risks for hepatitis B, get screened, and seek healthcare.

Hepatitis B, or HBV, is a leading cause of liver cancer, which is predicted to surpass breast, colorectal, and prostate cancer as the third leading cause of cancer-related death by 2030, according to the study's lead author Patricia Jones, M.D., assistant professor of medicine at the Miller School.

In research published last year in the Journal of Hepatocellular Carcinoma, Dr. Jones and Sylvester colleagues studied liver cancer disparities in Florida.

Among nearly 11,000 patients studied, African Americans were younger and had more widespread disease when diagnosed than white, Hispanic, and Asian patients. African Americans also were the least likely group to receive liver transplants.

Having HBV increases the odds that a person will develop liver cancer by nearly 22-fold, according to Dr. Jones.

When we studied patients with liver cancer in South Florida, we found that 8% of white liver cancer patients had long-term HBV infections, compared to 21% of African-American Black and 30% of Haitian liver cancer patients."

Patricia Jones, MD, Study Lead Author and Assistant Professor of Medicine, Miller School

Despite the availability of a vaccine and antiviral therapy to prevent and treat HBV, many who have the virus are unaware they have it until they develop complications, like liver cirrhosis and liver cancer.

As a result, HBV remains a significant public health problem in the U.S., where an estimated 1.4 million people have chronic HBV. Still, only 26.2% of those with chronic HBV infection were aware of their condition.

"Essentially, if you don't know that you have HBV, you cannot seek treatment for it and, if you develop cancer, you will likely present when the cancer is advanced, and there are fewer options for treatment," Dr. Jones said. "We want to interrupt that cycle by better understanding the perspectives of the populations most affected and creating programs that address those specific needs."

Dr. Jones and Sylvester Comprehensive Cancer Center colleagues reached out to Black communities in Miami and listened to what community members had to say about HBV.

Using community partnerships, such as the Center for Haitian Studies, the researchers recruited study participants by word of mouth, email, social media, and referrals from treating physicians at the University of Miami and Jackson Memorial Hospital Hepatology clinics.

The researchers held focus groups in Haitian Creole or English to better understand what African American and Haitian Blacks knew, did not know, and believed about HBV.

Of the 55 participants they studied, 27 were Haitian-born, and 27 were African American Blacks. Forty-two percent of the Haitian Blacks stated they knew about HBV before the study, compared to 78% of African American Blacks.

"Both groups expressed that fear, mistrust of the medical establishment, denial, and stigma might compel persons to avoid seeking care. Both groups attributed higher rates of late-stage (liver cancer) diagnosis in Blacks to inadequate financial resources and education," the authors wrote. "Those with HBV reported confusion regarding their infection and suboptimal communication with healthcare providers."

One message that emerged from the study is the need for better physician-patient communication, according to Dr. Jones.

"It's critical that we, as physicians, ask how much patients understand, and that we assess their understanding," Dr. Jones said.

Study participants' comments were eye-opening, helping Dr. Jones and her colleagues better understand the stigma associated with HBV in Black communities and other challenges to addressing existing disparities.

For example, African Americans tended to think hepatitis and liver cancer was uncommon among Blacks but described cirrhosis as common in their communities. Some thought HBV could be transmitted through cough, which is not true. Others confused HBV with human immunodeficiency virus, or H.I.V.

Haitian participants believed those diagnosed with HBV are unlikely to share their diagnosis or experience with others. Some Haitian group members also talked about the cultural belief that "supernatural" causes may lead to illness.

Most recognized that supernatural forces do not cause illness but expressed that for others, these beliefs are deeply entrenched in their culture, and this could make it harder to bring new knowledge into their community.

Participants also made suggestions about better reaching the Black communities, including going to community barbershops and schools and conducting home-based screenings. Dr. Jones and Sylvester researchers have recently studied and have submitted that work for publication.

"They said going to the doctor is difficult, and money is a challenge. They don't want to have to cancel work. These are all very practical reasons why people don't seek care," Dr. Jones said.

It is vital to develop community-based programs to inform Blacks about their risk of HBV. Among the important myths to dispel are that HBV infection does not represent moral failing, Dr. Jones said.

"In fact, the most common way that HBV is passed is from mother to child. As a physician, I really do not care how you got it; I just want to treat you so that we can decrease the risk of complications, like liver cancer. I think that this is the attitude communities should take. The key is to understand how to work best with communities and get people to engage in education, screenings, medical care, and research," she said.

This study is a continuation of Sylvester's longstanding commitment to community engagement and reducing healthcare disparities, according to Dr. Jones.

"Oftentimes, populations like these are overlooked. Some researchers say these populations are hard to engage in research. And that's true. But there are really good reasons for this. We need to find out what those reasons are so that we can break down barriers to participation," she said.