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

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

Highlighting a significant gap between such online use and practical recommendations from medical societies, the 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 Open JAMA Network.

“We learned that many of these websites use words that can be considered critical, like ‘alcoholic,’ rather than more neutral and respectful terms like ‘alcohol use disorder,'” says lead author Rachael Mahle, MD, a medical resident. intern at MGH.

“This is important as the 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 friendlier language to help patients feel more comfortable.” and supported when they seek the health information or treatment they need.”

The research was prompted by researchers’ recognition that the perceived stigma associated with alcohol use disorder (AUD) and alcohol-related liver disease (ALD) can lead to a delay in detection of the disease and potentially affect outcomes. Intervention strategies and liver transplant allocation decisions.

They set out to determine the extent to which accredited US liver transplant centers and addiction psychiatry websites at the same institutions have adopted recommendations from multiple professional societies to use non-stigmatizing language.

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

The results showed that stigmatizing language was prevalent on 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. Regarding ALD-specific references, 67 percent of transplant websites exclusively used stigmatizing language, 20 percent used non-stigmatizing language, and 13 percent used mixed language.

“The gap between professional society recommendations and actual practice is concerning, as patients frequently use these online resources to obtain information that can significantly influence their behavior and perceptions about alcohol-related liver disease,” he notes. Dr. Wei Zhang, Ph.D., lead author. of the study and treating gastroenterologist at MGH.

“Our findings underscore the need for hospitals to improve their communications by updating their language to align with non-stigmatizing, patient-centered 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 societies. professionals. Additionally, public understanding of the topic should be increased through patient awareness and education campaigns, as well as the implementation of feedback mechanisms on websites and regular content audits to help ensure adequate language standards.

MGH researchers, for their part, plan to expand their work in this field by studying the use of stigmatizing language in patient notes collected by doctors.

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

Zhang is a gastroenterologist and hepatologist at MGH and an assistant professor of Gastroenterology at Harvard Medical School. Lead author Rachael Mahle, MD, is an internal medicine resident at MGH.

More information:
Stigmatizing language for alcohol use disorder and liver disease on liver transplant center websites, Open JAMA Network (2024). DOI: 10.1001/jamanetworkopen.2023.55320

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