Stigmatizing language on liver transplant center websites may discourage patients from seeking treatment

BOSTON – The vast majority of liver transplant centers in the United States use language on their websites that can be considered stigmatizing through their use of words like “alcoholism,” “alcoholic” and “alcohol abuse,’ potentially hindering care and the willingness of patients to seek treatment, a study by Massachusetts General Hospital (MGH) has found.

In highlighting a significant gap between that online usage and the practice recommendations of medical societies, researchers called for a large-scale awareness and education campaign that encourages language in patient-facing materials that is more sensitive and non-stigmatizing. The study was published in JAMA Network Open.

“We learned that many of these websites use words that can be seen as judgmental, like ‘alcoholic,’ instead of more neutral, respectful terms like ‘alcohol use disorder,’” says lead author Rachael Mahle, MD, an internal medicine resident at MGH. “This is important given that words used in healthcare can affect how patients feel and whether they seek clinical help. Our findings suggest there is a need for these websites to use kinder language which would help patients feel more comfortable and supported when they look for health information or treatment they need.”

The investigation was prompted by the recognition of researchers that the perceived stigma attached to alcohol use disorder (AUD) and alcohol-associated liver disease (ALD) can lead to delayed disease detection and potentially impact intervention strategies and liver transplant allocation decisions. They set out to determine to what extent accredited U.S. liver transplant centers and addiction psychiatry websites at the same institutions have adopted the recommendations of multiple professional societies to use non-stigmatizing language.

To that end, the team systematically analyzed the use of language deemed to be stigmatizing on 114 liver transplant center websites and 104 addiction psychiatry websites across the country. The results were validated using a chi-squared test, a statistical hypothesis tool commonly used in research.

The results showed that stigmatizing language was prevalent across 88 percent of transplant center websites and 46 percent of addiction psychiatry websites.

In the context of AUD-specific references, nearly 80 percent of transplant websites used only stigmatizing language, compared to 31 percent of addiction psychiatry sites. As for ALD-specific references, 67 percent of transplant websites used stigmatizing language exclusively, 20 percent used non-stigmatizing language, and 13 percent used mixed language.

“The gap between professional society recommendations and actual practice is concerning since patients frequently use these online resources for information which can significantly influence their behavior and perceptions about alcohol-associated liver disease,” notes Wei Zhang, MD, PhD, senior author of the study and an attending gastroenterologist at MGH. “Our findings underscore the need for hospitals to improve their communications by updating their language to align with patient-first, non-stigmatizing approaches which we know from experience can lead to better health outcomes.”

A critical step toward that goal, according to the study, is the development of educational initiatives for healthcare providers focused on the importance of patient-centered communications, a task that should involve collaboration between healthcare institutions and professional societies. Moreover, public understanding around the issue should be raised through patient education and awareness campaigns, as well as implementation of feedback mechanisms on websites and regular content audits to help ensure appropriate language standards. MGH researchers, for their part, plan to expand their work in this field by studying the use of stigmatizing language in the patient notes which doctors compile.

“The slow adoption of non-stigmatizing language may be due to a lack of awareness about its association with healthcare and resistance to change,” explains Zhang. “The steps we are recommending should not only help to align clinical practice with sound language guidelines, but also foster a more empathetic and supportive healthcare environment for patients.”

Zhang is a gastroenterologist and hepatologist at MGH, and assistant professor of Gastroenterology at Harvard Medical School. Lead author Rachael Mahle, MD, is an internal medicine resident at MGH. Co-authors include Jay Luther, MD, a gastroenterologist at MGH and assistant professor of Medicine at Harvard Medical School; Adedayo Okanlawon, MD, an internal medicine resident at MGH; and Jeremy Louissaint, MD, an assistant professor of Internal Medicine at UT Southwestern Medical Center.

 

About the Massachusetts General Hospital

Massachusetts General Hospital, founded in 1811, is the original and largest teaching hospital of Harvard Medical School. The Mass General Research Institute conducts the largest hospital-based research program in the nation, with annual research operations of more than $1 billion and comprises more than 9,500 researchers working across more than 30 institutes, centers and departments. In August 2021, Mass General was named #5 in the U.S. News & World Report list of "America’s Best Hospitals." MGH is a founding member of the Mass General Brigham healthcare system.