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The former Metabolic and Fatty Liver Clinic at the University of Chicago Medicine is getting a new name that transcends mere signage.
Clinic director Mary E. Rinella, MD, spearheaded a years-long process to change nomenclature (perceived characteristics) surrounding the disease worldwide.
The new terminology drops stigmatizing words, precisely describes the condition and identifies a subgroup of patients omitted under the former diagnostic criteria, said Rinella, a board-certified transplant hepatologist and professor at University of Chicago Pritzker School of Medicine.
The new, neutral name under consideration is the Metabolic Liver Clinic. The change is subtle, but it reflects a shift in how clinicians and patients approach a disease that affects up to 30% of adults worldwide.
No more ‘fatty’
Gone is the long-used, problematic term “nonalcoholic fatty liver disease,” which most members of a 236-person multinational panel of clinicians, patients, public health and regulatory representatives agreed could create stigma. But that wasn’t the only reason for dissatisfaction with the label, Rinella said.
“Nonalcoholic liver disease is an exclusionary diagnosis,” she said. “You’re saying what it’s not – ‘It’s not alcohol, but what is it?’”
The answer: it’s a metabolic disease. Fat accumulates in the cells of the liver, causing inflammation and scarring that can lead to liver cancer or the need for a transplant.
That’s why the new name for nonalcoholic fatty liver disease is “metabolic dysfunction-associated steatotic liver disease,” or MASLD, which reflects the underpinnings of the disease and changes the conversation with patients, Rinella said.
“It speaks to the abnormal metabolism that leads to this liver disease,” she said. “It points you toward an understanding of how you got there in the first place.”
People with diabetes, obesity, high blood pressure and high cholesterol are at high risk, but the disease can be asymptomatic and undiagnosed, Rinella said.
Patients sometimes land in her clinic after an ultrasound, CT scan or blood test reveals the disease. A screening tool known as FIB-4 can help identify liver disease and is recommended for at-risk people, particularly individuals with diabetes.
“If you catch it early enough, you can reverse it. The problem is that it’s not noticed, and then people get super sick and they get cirrhosis, or they get cancer,” Rinella said.
An alphabet of new names
MASLD is part of a constellation of new, neutral names announced in June at the European Association for the Study of the Liver (EASL) Congress. The news was published simultaneously in Hepatology, Journal of Hepatology and Annals of Hepatology, on behalf of the American Association for Study of Liver Disease, the EASL in Switzerland and the Asociación Latinoamericana para el Estudio del Hígado in South America (ALEH).
Steatotic liver disease is the overarching term for liver disease with metabolic or alcohol-related causes, Rinella said.
The new category, “MetALD,” covers patients with metabolic liver disease who consume moderate amounts of alcohol, bridging a gap between MASLD and alcohol-related liver disease.
Until now, such patients would have been excluded from clinical trials for MASLD, “which means that we may not understand how they respond to treatment,” Rinella said.
“There are actually medications that would work nicely in a patient population like that, so there’s already research activity starting on that group of patients,” she said.
Worldwide change
The Nomenclature Development Initiative led by Rinella came about after an alternate name was proposed for what is now MASLD. That term, metabolic dysfunction-associated fatty liver disease, or MAFLD, began to gain traction, but it also represented a “very significant” problem by setting more stringent metabolic criteria and allowing for concomitant alcohol use, Rinella said.
As a result, MAFLD defined a patient population that differed from the standard group that served as the basis for decades of research, she said.
MASLD, while providing an affirmative definition, retains alcohol limits in use and is sufficiently broad for the patient population to have near-complete overlap with NAFLD, Rinella said. With the new MetALD category, “disease course in this important population can be assessed and addressed,” Rinella said.
The nomenclature initiative was built around transparency and consensus, using a Delphi process (which uses the collective opinion of panel members).
“We did this to bring all parties together to try and reach a common ground,” Rinella said.
The work is still incomplete. One challenge is changing billing codes, not just in the U.S., but around the globe, Rinella said.
Organizations large and small will have to make the transition in a way that avoids confusing patients or losing identity and referrals — a discussion that will be had before the new clinic name is finalized at UChicago Medicine, Rinella said.
“It just takes time,” Rinella said.
The new terminology “has been taken up extremely well,” she said. “Surprisingly well, actually. All over the world, it’s being used.”
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