Nonalcoholic fatty liver disease is a silent, symptomatic condition in which excess fat accumulates in the liver. It ranks as the most common liver disease globally, and it is estimated that this syndrome, often associated with obesity and metabolic syndrome, affects about 24% of the world’s population.
According to a Spanish study led by a team from the University of Barcelona, the Network of Biomedical Research Center for Hepatology and Gastroenterology (CIBEREHD), Hospital Clinic Barcelona, and the August Pi Sunyer Institute for Biomedical Research (IDIBAPS), approximately 7 out of 10 patients with liver disease have liver disease. Fatty people not associated with alcohol consumption are a kind of stigma in their daily lives.
As Marta Carroll, a pre-doctoral researcher in the IDIBAPS Chronic Liver Disease group and one of the study’s lead authors, explained, “Stigmatization is a well-documented problem for some conditions. But while perceived stigma is common in alcohol-related liver disease and hepatitis C, There is very little information about it in patients with nonalcoholic fatty liver disease. This is a relatively new, 20-year-old unknown syndrome that motivated our study.”
According to Carroll, another reason for conducting the research was published in the journal PLUS ONE, with regard to the current screening for early detection of the disease before it reaches the stage of cirrhosis. “This information helps improve lifestyles, such as diet and exercise, allowing the most serious stages of the disease to be reversed,” said Carroll, whose research has focused on analyzing the frequency and characteristics of stigma observed among patients with nonalcoholic fatty liver.
In addition to the differences in perceived stigma between patients at different stages of the disease (without cirrhosis, with compensated cirrhosis, and decompensated cirrhosis), we compared the perceived stigma in patients with cirrhosis of nonalcoholic fatty liver disease with That of patients with alcohol-related cirrhosis.” “Finally, we assessed whether perceived stigma is associated with patients’ quality of life, as assessed by the Chronic Liver Disease Questionnaire.”
To do this, the team collected data from 197 patients from the Department of Hepatology at Barcelona Clinical Hospital, of whom 144 had nonalcoholic fatty liver disease and 53 had cirrhosis associated with alcohol consumption. Since nonalcoholic fatty liver disease is often associated with poor quality of life, the potential relationship between perceived stigma and quality of life for these patients was also explored. Perceived stigma was assessed using a specific questionnaire that took into account four areas: stereotypes, discrimination, stigma, and social isolation.
lack of studies
Carroll noted that there is limited information on the perceived stigma of cirrhosis, the final stage of chronic inflammation of the liver due to multiple etiologies. “Before our study was conducted, we had only two existing studies focused on evaluating the prevalence, characteristics, and outcome of stigma in patients with cirrhosis.”
In a study of 149 patients with cirrhosis of various etiologies, most patients (89%) felt stigmatized in at least one aspect of their lives. Young stigma and hepatitis C infection or alcohol consumption have been associated with cirrhosis. “It is important to note that stigma had a marked negative impact on patients’ lives, as patients with high stigma received less social support, were less likely to seek medical care, experienced more depression, and had a poorer quality of life. ,” IDIBAPS researcher highlighted. The second study, a qualitative investigation of 15 patients with cirrhosis, found that perceived stigma was common.
In addition to the limited studies focusing on stigma, there is not enough literature. “This is why we proposed this study of stigma self-perception,” Carroll said. Although work led by Catalan sites has analyzed the negative impact on patients’ ability to cope with their illness and treatment, it has not been able to examine the potential impact of stigma in areas other than quality of life, such as psychological status or access. To take care, as this will require additional specific studies.
“The idea is to expand research with a qualitative approach, interviewing patients instead [using] Questionnaires, then examine stigma from other perspectives, such as public perception or the health sector. We want to investigate the current structural stigma. But the following lines of study have yet to be defined, and we lack the time to do so, as well as to gather resources,” Carroll said.
Increase the clarity of the disease
The study findings are a warning sign about the importance of perceived stigma in NASH patients, which affects highly sensitive areas of life, such as discrimination and social isolation. For Carroll, “The findings found are very important for health professionals, patient associations, and policy makers and should stimulate further research, as well as encourage initiatives aimed at preventing discrimination between people with nonalcoholic fatty liver disease.”
There are currently no awareness campaigns about this disease. “I think it’s very much needed. The more the disease is talked about, the more supported patients feel,” Carroll said, referring to the effects the media has had on patients with other illnesses.
“When a disease is not stigmatized, more knowledge is generated. A clear example of this is cardiovascular disease, which is discussed in the news daily. People empathize with [patient with] Myocardial infarction due to its appearance. However, this does not happen with cirrhosis. Carroll said cirrhosis has many biases, such as drug abuse, alcohol abuse or obesity. “Patients feel very lonely, and there is still a long way to go when it comes to talking about nonalcoholic fatty liver disease.”
This article was translated from Univadis Spain.