The name of the common disease fatty liver has changed dramatically. In particular, the old name NAFLD (non-alcoholic fatty liver disease) was inadequate in practice, was always viewed with skepticism and was stigmatizing for patients. Within the worldwide Delphi project, experts have almost unanimously agreed on the new naming. 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 the change.
De Knegt and Van Kleef have conducted research into fatty liver disease in recent years. Specifically, they examined how often it occurs in the general Dutch population and what risk factors are for a serious course. Van Kleef received his PhD for his research at the beginning of this year. He says: “Most people with fatty liver disease fall into the NAFLD group, but there has been a fuss about that name for a long time. Ultimately, an international group of experts drew up new definitions. This happened within the Delphi project with a panel of approximately 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 (metabolic dysfunction-associated steatotic liver disease), largely the former group of non-alcoholic fatty liver disease. These are people with metabolic syndrome and fatty liver disease. The MetALD group are people with MASLD who consume 140-350 g (women) or 210-420 g (men) of alcohol weekly. The third group is ALD (alcohol associated liver disease), the group with more alcohol consumption than the previous group. In the ALD group, alcohol is in the foreground. In addition, there are 2 groups for more rare or misunderstood diseases: specific aetiology SLD (steatotic liver disease) for various causes of steatosis and cryptogenic SLD for people without metabolic syndrome and unknown cause of their fatty liver.
Stigmatizing
Why were the old names not sufficient? Van Kleef explains: “We had the names NAFLD and ALD, for non-alcoholic 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 group with non-alcoholic fatty liver disease, which meant that their fatty liver disease was wrongly associated with drinking. There are also people with metabolic risk factors such as diabetes and obesity who also occasionally drink one drink too many. They couldn’t have ‘NAFLD’ anymore.”
The term ‘non-alcoholic’ excluded low alcohol consumption. While an occasional drink, in addition to metabolic dysfunction, also plays a major role in the disease process of fatty liver disease. In addition, the name ‘non-alcoholic’ is not informative at all, explains Van Kleef. “We don’t call a broken arm a non-broken leg. If the fatty liver disease is non-alcoholic, you still don’t know what it is. In English it is called ‘fatty liver disease’, but that is stigmatizing and confrontational for the patients concerned. Fat naturally plays a role in the clinical picture, but the patient organization did not think it desirable to name it in this way.”
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 naming had not been chosen so fortunately. “In addition, there was previously little insight into the extent of the disease among the population. The term NASH (subgroup of old NAFLD) was coined by pathologists in the US about 25 years ago. They saw a picture of serious liver inflammation in people who had no specific risk factors and did not consume alcohol excessively. But the characteristics were similar to what you see with alcoholic liver inflammation. That’s why they called it non-alcoholic steatohepatitis. It has remained that way over the years. Ultimately, there appeared to be little that could be done about the disease, except lifestyle advice to eat less and exercise more.”
But gradually fatty liver disease also became 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,” De Knegt continues. “That can lead to fatty liver disease, or what we now call MASLD. We have also conducted research in people who have undergone a liver transplant. A significant percentage of them required transplantation due to MASLD. There was more and more publicity about the disease and thus awareness about the naming grew.”
Broader consequences
The time was therefore ripe for a new name. There are various causes of fatty liver disease. Van Kleef found it interesting to participate in the Delphi project. “We come from the research ourselves. But questions also arose that have consequences for the industry. A new name with a new definition has consequences for, for example, ongoing studies with new medication against fatty liver disease. Because suddenly the patient population is in danger of changing. There is more to a name change than you initially realize. Pediatricians were also involved. Fatty liver disease in children is diagnosed differently than in adults. It was great to come to a successful 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 the different forms of fatty liver disease.”
Fatty liver classification.
Implementation
Van Kleef and De Knegt think the new division with 5 groups is better and clearer. Practitioners now know better what they can do with which patient. In practice, the intention is now that doctors will use the new names. So no more NAFLD, but SLD or steatotic liver disease with the subgroups. De Knegt thinks that implementation will take time. “If the new classification becomes established, it will also have to be ‘officially’ adjusted in, for example, patient files. A few years ago there was a similar name change from primary biliary cirrhosis, or PBC. This was necessary because most people do not have cirrhosis, but bile duct inflammation. The name has been changed to primary biliary cholangitis. That was about 8 years ago, but only since last year has it been adjusted in the electronic patient files. This required some pressure, including from myself to the manufacturers of the EPDs. So it can take a long time before changes are implemented.”
Recognition for patients
According to De Knegt, the importance of the current name changes lies mainly in the recognition for patients of their disease. The vast majority will no longer be blamed for excessive alcohol consumption. In addition, many new drugs are being developed that have specific targets in pathophysiological processes. “Then a good definition of fatty liver disease is all the more important. Because then you know better who should be treated with what.”
For Van Kleef, the biggest benefit is that faster and more effective diagnosis is now possible: “Until now, we first had to rule out all kinds of aspects, such as alcohol use, rare diseases or a viral liver infection. If fatty liver disease is visible on the ultrasound in someone who is overweight, diabetic or has high blood pressure, the diagnosis is immediately complete, namely MASLD (or MetALD if alcohol still plays a role). We now categorize by what it is and not by what it is not. That works better. Also for general practitioners, they can now also make the diagnosis. It is no longer necessary to refer a patient for all tests to rule out cases.”
Quickly in guidelines
Because of their research and publications, Rob de Knegt and Laurens van Kleef both participated in the Delphi project, which started about 2 years ago. The participants received an extensive survey via email four times and at the end of 2022 a physical session took place with approximately 40 participants in Chicago, where Van Kleef was present. The new name was presented last June at the International Liver Congress in Vienna.
Van Kleef thinks that the new classification can quickly be included in guidelines: “The Delphi project was set up by 3 major MDL professional associations: the European, the North American and the South American. They will likely quickly incorporate the change into their guidelines.”
2024-01-08 12:01:09
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