Low liver awareness among the public

Text: Annika Lund, for Medicinsk Vetenskap nr 4, 2023  | Spotlight on the liver

It has previously been investigated what liver patients know about their disease, but there are virtually no studies on what the general public actually knows. To answer this question, 500 Swedes from the normal population completed a questionnaire asking them what they know, believe and think about the liver and its diseases. The study participants reflected the Swedish public in terms of age, gender, income and education.

Nearly one in three people believes that the liver produces urine (wrong), and one in five believes that they can live without any liver at all (also wrong). A quarter think the rib cage houses the liver, while 6 per cent believe the liver is located neither in the abdomen nor in the rib cage.

Few talk about liver health

A majority or respondents rarely or never discuss their liver health with their doctor. One in five doesn’t talk to friends about it either, mainly because simply raising this topic of conversation can prompt suspicions that they have an alcohol problem.

Six out of ten agree that liver disease is shameful. Only mental illness and obesity are considered more stigmatising than cirrhosis of the liver, which, according to one in three people, is always caused by alcohol.

In general, it can be said that younger people are less knowledgeable about the liver. They are also less likely to view liver problems as stigmatising. And in general, respondents’ level of education seems to have little bearing on their level of knowledge. 

Why is this a problem?

“It’s a problem that people don’t know what risks their lifestyle entails and don’t understand when to seek care. It's also a problem that people who have liver disease don’t feel free to talk about it, because they’re so tired of everyone thinking they’re drinking too much alcohol. In the same vein, it’s a problem that alcohol abuse is so stigmatised,” says liver doctor Staffan Wahlin, who conducts research at Karolinska Institutet’s Department of Medicine, Huddinge. 

What do you think needs to be done?

“Knowledge must be increased on three fronts: among patients, among the general public, and in healthcare. Time and time again, we meet patients who’ve been told by other doctors that they should cut down on alcohol, when in fact they have a treatable liver disease that has nothing to do with alcohol, such as the hereditary disease hemochromatosis, where the intestine absorbs too much iron, which is then stored in the liver, resulting in damage. The disease is treatable if you diagnose it in time, but sometimes it’s progressed very far by the time a patient comes to us. It’s sad and upsetting. Elevated results on liver function tests should be taken seriously and need to be explained with a correct diagnosis.”

Liver health literacy and social stigma of liver disease: A general population e-survey.
Wahlin S, Andersson J
Clin Res Hepatol Gastroenterol 2021 Sep;45(5):101750