PBC worst for life quality among autoimmune liver diseases: Study
Abdominal troubles, fatigue, anxiety among issues for patients
Adults with autoimmune liver disease experience lower quality of life, especially those with primary biliary cholangitis (PBC), who report more fatigue, sleepiness, and pain than adults with primary sclerosing cholangitis (PSC) or autoimmune hepatitis (AIH).
That’s according to a study that surveyed more than 400 people with these autoimmune liver diseases over seven years at the Beth Israel Deaconess Medical Center in Boston.
Women, people of Hispanic origin, and those with simultaneous fatty liver disease or cirrhosis (irreversible liver scarring) were significantly more likely to have lower quality of life, the data showed.
“We recommend routine mental health evaluations, such as depression or anxiety screening … for general practice in AILD [autoimmune liver disease] patients, especially after diagnosis of PBC,” the researchers wrote.
The study, “Primary biliary cholangitis has the worst quality of life indicators among the autoimmune liver diseases: A United States cohort,” was published in the Annals of Hepatology.
Mistaken immune attacks can cause liver inflammation, damage
Autoimmune liver diseases occur when the immune system mistakenly attacks the liver, causing lasting inflammation that over time can damage the organ.
PBC and PSC are chronic, autoimmune forms of cholangitis, a condition marked by inflammation of the bile ducts, the tubes that carry the digestive bile from the liver to the intestines.
In PBC, the abnormal immune attacks damage the bile ducts inside the liver; in PSC, bile ducts both inside and outside the liver can be damaged. Both conditions often cause fatigue and itching, which greatly affect daily life.
Autoimmune hepatitis is a rare form of liver inflammation caused by a mistaken immune response.
Without treatment, each of these conditions can cause cirrhosis.
The researchers set out to better understand how autoimmune liver disease affect quality of life. They recruited 466 adults — 118 with PBC, 118 with PSC, and 230 with AIH — between January 2018 and July 2024.
The PBC group had a significantly higher proportion of women and whites, while Hispanics were more common in the AIH group. PBC and AIH patients had comparable ages, but people with PSC were, on average, about 10 years younger. Cirrhosis was significantly more common in people with AIH.
Participants were asked to respond to two questionnaires during each medical appointment: the Chronic Liver Disease Questionnaire (CLDQ), a measure of liver-specific symptoms; and the EuroQol-5 Dimension (EQ-5D), a general measure of health. A total of 1,214 survey responses were collected.
The CLDQ rates abdominal symptoms, fatigue, systemic (body-wide) symptoms, activity, emotional function, and worry on a scale from 1-7, with higher scores indicating better quality of life.
Results showed that, on average, the total CLDQ score was significantly lower in PBC patients (5.25) than in the AIH (5.54) and PSC groups (5.59). Fatigue was the most severe symptom in the PBC group, with patients reporting significantly more tiredness, decreased energy, and sleepiness during the day compared with those with PSC or AIH.
People with PBC also scored significantly worse for bodily pain, dry mouth, and itch, while those with PSC had the least severe body-wide symptoms. The severity of anxiety was similar across groups, but the PBC group reported more unhappiness, irritability, mood swings, depression, and concentration problems.
The EQ-5D looks at mobility, self-care, activity, pain, and anxiety/depression — rated from 1 (no problems) to 3 (extreme problems). These scores are then used to calculate a utility index, which ranges from 0 to 1, with a higher value indicating better quality of life.
Data demonstrated that, again, people with PBC scored significantly worse (0.85) than those with PSC or AIH (0.88 each). When participants were asked to rate their health from zero (worst) to 100 (best), those with PBC had the lowest values (72.26) relative to PSC (76.6) and AIH (77.28).
Pain was “the most debilitating symptom, with 41.1% of PBC patients reporting ‘moderate to extreme pain and discomfort,’” the researchers wrote.
The severity of mobility and self-care difficulties were generally comparable between PBC and AIH patients, while people with PSC scored significantly better on these measures. There were no significant differences in terms of anxiety or depression scores among the groups.
Further statistical analyses showed that women, Hispanic patients, overlapping metabolic-associated steatotic liver disease (MASLD), and cirrhosis were independent predictors of lower quality of life. MALSD is a form of fatty liver disease that’s associated with cardiovascular risk factors such as obesity and high blood pressure.
“To our knowledge, this is the first study of its kind, identifying key factors impacting HRQOL [health-related quality of life] across all AILDs, with subgroup analysis highlighting several notable findings,” the researchers wrote. With PBC patients appearing to be “the most impacted,” they wrote, there is an “urgent need for research on treatments targeting PBC-related fatigue as well as broader AILD HRQOL symptomatology.”
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