Websites of transplant centers in US stigmatize ALD with word choice

Use of 'alcoholic' and not 'alcohol-associated' liver disease can affect care

Lindsey Shapiro, PhD avatar

by Lindsey Shapiro, PhD |

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The word

Most liver transplant centers in the U.S. continue to use stigmatizing language on their websites that could make people with alcohol-associated liver disease (ALD) less willing to seek treatment, scientists report.

Disease experts recommend that certain language related to alcohol use, such as “alcoholic” or “alcohol abuse,” be minimized on these sites, and that alcohol-associated liver disease replace the condition’s previous and widely used label: alcoholic fatty liver disease.

Still, 88% of transplant center websites in the U.S. that discussed ALD and its associated concepts continue to use stigmatizing forms of language to some degree.

“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,” Wei Zhang, MD, PhD, a gastroenterologist at Massachusetts General Hospital, an assistant professor at Harvard Medical School, and the study’s senior author, said in a hospital press release.

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“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,” Zhang added.

The study, “Stigmatizing Language for Alcohol Use Disorder and Liver Disease on Liver Transplant Center Websites,” was published as a research letter in JAMA Network Open.

ALD occurs when fatty deposits build in the liver due to chronic alcohol consumption, ultimately driving inflammation (hepatitis) and scarring. When the liver is irreversibly scarred and damaged — a stage called cirrhosis — a liver transplant may be necessary.

Accumulating evidence indicates that the language commonly used in reference to ALD and alcohol use disorders (AUD) — words such as “alcoholic” — contribute to both perceived and experienced stigma. Such stigma can affect a person’s willingness to seek help, as well as the availability and quality of the care they’re given.

People seeing such language on health resources used by the public, like treatment center websites, may be less likely to seek needed treatment. Such language also may influence decisions regarding eligibility for a liver transplant, according to the scientists.

A number of professional societies and organizations, including the National Institute on Alcohol Abuse and Alcoholism, favor less stigmatizing language, like using ALD as a substitute for alcoholic fatty liver disease.

Zhang and colleagues at Massachusetts General and the University of Texas Southwestern Medical Center investigated whether 114 accredited U.S. liver transplant centers and their 104 addiction psychiatry sites had adopted disease language recommendations.

A total of 82 transplant centers (71.9%) had descriptions regarding AUD, ALD, alcohol-associated hepatitis, and/or alcohol-associated cirrhosis. Among these 82 centers, 87.8% of them used some type of stigmatizing language, including “alcoholism,” “alcoholic,” and “alcohol abuse,” the team noted.

‘Words used in healthcare’ can affect patients and their openness to care

When referencing ALD, 66.7% of transplant centers exclusively used stigmatizing language and 13% used mixed terminology. The remaining 20% of these centers used what experts considered nonstigmatizing language exclusively, such as “AUD,” “alcohol misuse,” “alcohol-associated,” or “alcohol-related.”

Most transplant centers used stigmatizing language when referencing alcohol-associated hepatitis (95.7%) and alcohol-associated cirrhosis (85.7%).

Among the addiction psychiatry websites, only 39 (37.5%) described alcohol use disorders, and nearly half — 46.2% — used stigmatizing language.

While most transplant websites (79.2%) solely used stigmatizing language in relation to AUD, such language was seen on far fewer (30.8%) addiction websites — a statistically significant difference.

Only 31.7% of the 60 transplant centers used consistent language in discussing AUD both on their own website and on their corresponding addiction department website.

“Our findings reveal limited and inconsistent adoption of nonstigmatizing language for AUD and ALD across transplant websites compared with addiction psychiatry websites,” the researchers wrote.

“This is important given that words used in healthcare can affect how patients feel and whether they seek clinical help,” said Rachael Mahle, MD, a medical resident at Massachusetts General and the study’s first author.

“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,” Mahle added.

Moving forward, the researchers noted a critical need for educational initiatives that will help both healthcare providers and the public better understand the issue.

With patients increasingly seeking health-related content online, efforts also are needed to appropriately monitor websites and their language choices.

“Patients increasingly seek health-related information online, which can significantly influence behavior,” the scientists concluded. “Although it is encouraging that academic societies advocate for nonstigmatizing language to describe ALD, our results call for hospital systems to reassess and update their language to align with nonstigmatizing terminology, which may enhance patient care and improve patients’ willingness for treatments.”

The team plans to further study the use of stigmatizing language in the notes that doctors take at patient visits.