A Massachusetts General Hospital (MGH) investigation of the websites of liver transplant centers in the U.S. found that the vast majority of them use stigmatizing language on their websites. The language that is being used are words such as “alcoholism,” “alcoholic,” or “alcohol abuse,” which could potentially discourage the willingness of patients to seek treatment.
The study was prompted by a recognition that the perceived stigma of alcohol use disorder (AUD) and alcohol-associated liver disease (ALD) can lead to delays in seeking care, hindering disease detection, treatment, and liver transplant allocation decisions. The findings, published today in JAMA Network Open, also shine a light on the gap between practice recommendations of medical societies and online usage of stigmatizing language.
“We learned that many of these websites use words that can be seen as judgmental,” said 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 study sought to find the extent to which accredited liver transplant centers and addiction psychiatry websites at the same institutions have adopted the recommendation of medical societies on the use of non-stigmatizing language. The MGH team systematically analyzed the language on the websites of 114 liver transplant centers and 104 addiction psychiatry websites in the U.S. Results of these examinations were validated using the statistical hypothesis tool called the chi-squared test.
Results of this analysis revealed that stigmatizing language was present in 88% of liver transplant center websites and on 46% of addiction psychiatry websites. Looking at AUD-specific references, roughly 80% of liver transplant center websites used only stigmatizing language compared with 31% of the websites for addiction psychiatry. The news was only slightly better for ALD-specific references with 67% of transplant websites using stigmatizing language exclusively, 20% using non-stigmatizing language, and 13% percent using both stigmatizing and non-stigmatizing 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,” said 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.”
To help address these issues, the MGH researchers suggest a two-pronged educational approach. One arm should be focused on healthcare providers to emphasize the importance of patient-centered communications, with programs developed in collaboration with professional societies. A second effort would be broader patient awareness campaigns and systems to allow for content feedback and regular audits of websites to ensure appropriate language is used.
“The slow adoption of non-stigmatizing language may be due to a lack of awareness about its association with healthcare and resistance to change,” Zhang noted. “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.”
