The name of the common fatty liver disease has changed dramatically. In particular, the old name NAFLD (non-alcoholic fatty liver disease) was inappropriate in practice, was always viewed with skepticism, and stigmatized patients. As part of the global Delphi project, experts almost unanimously agreed on the new name. Gastroenterologist and trainer Dr. Rob de Knegt and gastroenterologist in training Dr. Laurens van Kleef (Erasmus MC) participated in the Delphi project and talk about the how and why of change.
De Knegt and Van Kleef have been researching fatty liver disease in recent years. Specifically, they looked at how often it occurs in the general Dutch population and what the risk factors are for a severe outcome. Van Kleef received his PhD for his research earlier this year. He says: “Most people with fatty liver disease fall into the NAFLD group, but for a long time there was a fuss about that name. Eventually, an international group of experts came up with new definitions. This took place as part of the Delphi project with a panel of around 250 participants from all over the world.”
3 main groups
There are now 3 main groups of patients under the umbrella term SLD (steatotic liver disease). The largest group is MASLD (steatotic liver disease associated with metabolic dysfunction), largely the first group of non-alcoholic fatty liver disease. These are people with metabolic syndrome and fatty liver disease. The MetALD group includes people with MASLD who consume 140-350 g (women) or 210-420 g (men) of alcohol per week. The third group is ALD (alcohol-associated liver disease), the group with higher alcohol consumption than the previous group. In the ALD group alcohol is in the foreground. Additionally, there are 2 groups for more rare or misunderstood diseases: etiology-specific SLD (steatotic liver disease) for various causes of steatosis, and cryptogenic SLD for people without metabolic syndrome and unknown cause of fatty liver.
Stigmatizing
Why weren’t the old names enough? Van Kleef explains: “We had the names NAFLD and ALD, for nonalcoholic and alcoholic fatty liver disease, respectively. But those names were confusing. Because there are many people who are overweight, but do not drink alcohol. They fell into the non-alcoholic fatty liver disease group, meaning their fatty liver disease was incorrectly associated with drinking. There are also people with metabolic risk factors such as diabetes and obesity who occasionally have one drink too many. They could no longer have ‘NAFLD’ written on them.”
The term “non-alcoholic” excluded low alcohol consumption. While an occasional drink, in addition to metabolic dysfunction, also plays an important role in the pathological process of fatty liver disease. Additionally, the name “non-alcoholic” is not at all informative, Van Kleef explains. “We don’t call a broken arm an unbroken leg. If fatty liver disease is non-alcoholic, you still don’t know what it is. In English it is called “fatty liver disease”, but this is stigmatizing and conflicting for the patients affected. Fat naturally plays a role in the clinical picture, but the patient organization did not see fit to call it that.”
It took a long time
The old names have been used for a long time. But according to De Knegt it also took a long time before he realized that the name had not been chosen so fortunately. “Furthermore, there was previously little information on the extent of the disease among the population. The term NASH (subgroup of old NAFLD) was coined by pathologists in the United States about 25 years ago. They saw a pattern of severe liver inflammation in people who had no specific risk factors and did not consume alcohol excessively. But the characteristics were similar to those seen in alcoholic liver inflammation. That’s why they called it non-alcoholic steatohepatitis. It has remained that way over the years. In the end, there seemed to be little that could be done about the disease except lifestyle advice to eat less and exercise more.”
But gradually fatty liver disease has also become common in people with diabetes mellitus, which is also common in overweight people and the elderly. “Studies show that about a third of all people, including healthy people, are overweight,” continues De Knegt. “This can lead to fatty liver disease, or what we now call MASLD. We have also conducted research on people who have had a liver transplant. A significant percentage of them required transplantation due to MASLD. There was more and more publicity about the disease and therefore awareness about the naming grew.”
Wider consequences
The time was therefore ripe for a new name. There are various causes of fatty liver disease. Van Kleef found participating in the Delphi project interesting. “We ourselves come from research. But questions have also emerged that have consequences for the industry. A new name with a new definition has consequences, for example, on ongoing studies with new drugs against fatty liver disease. Because suddenly the patient population risks changing. There’s more to a name change than you initially think. Pediatricians were also involved. Fatty liver disease in children is diagnosed differently than in adults. It was great to come to a positive conclusion with new names and definitions together with different experts and from different perspectives.”
De Knegt agrees: “A nice new classification has been created with different names for different forms of fatty liver disease.”
Classification of fatty liver.
Implementation
Van Kleef and De Knegt believe that the new division into 5 groups is better and clearer. Professionals now know better what they can do with which patient. In practice, the intention now is for doctors to use the new names. So no longer NAFLD, but SLD or steatotic liver disease with subgroups. De Knegt believes that implementation will take time. «If the new classification is established, it will have to be adapted ‘officially’, for example, in patient records. A few years ago there was a similar name change from primary biliary cirrhosis, or PBC. This was necessary because most people do not suffer from cirrhosis, but from inflammation of the bile duct. The name has been changed to primary biliary cholangitis. This happened about 8 years ago, but has only been adapted into the electronic medical record since last year. This required some pressure, also from me, on the EPD manufacturers. So it can take a long time for changes to be implemented.”
Recognition for patients
According to De Knegt, the importance of the current name change lies above all in the recognition of the disease by patients. The vast majority will no longer be charged with excessive alcohol consumption. Furthermore, many new drugs are being developed that have specific targets in pathophysiological processes. “So a good definition of fatty liver disease is even more important. Because then you will know better who should be treated with what.”
For Van Kleef the biggest advantage is that a quicker and more effective diagnosis is now possible: “Until now we had to first exclude all kinds of aspects, such as alcohol consumption, rare diseases or a viral liver infection. If fatty liver disease is visible on ultrasound in a person who is overweight, diabetic or with high blood pressure, the diagnosis is immediately complete, i.e. MASLD (or MetALD if alcohol still plays a role). Now we classify by what it is and not by what it is not. It works better. Even for general practitioners they can now also make the diagnosis. It is no longer necessary to subject a patient to all the tests to exclude cases.”
Quickly into the guidelines
Thanks to their research and publications, Rob de Knegt and Laurens van Kleef both participated in the Delphi project, which started about 2 years ago. Participants received an extensive email survey four times, and a physical session with approximately 40 participants took place in late 2022 in Chicago, where Van Kleef was present. The new name was presented last June at the International Liver Congress in Vienna.
Van Kleef believes that the new classification can be quickly included in the guidelines: “The Delphi project was initiated by 3 large MDL professional associations: the European one, the North American one and the South American one. They will likely incorporate the change into their guidelines quickly.”
2024-01-08 12:01:09
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