Identifying Symptom Profiles Among Adults with PSC
Many people with primary sclerosing cholangitis (PSC) experience a range of symptoms that can affect daily life. A 2025 study looked at how common these symptoms are and how they tend to occur together.
How the PSC symptoms research was conducted
Researchers surveyed adults with PSC through the PSC Partners Patient Registry and liver specialists in the United States. Participants were asked whether they had experienced any of 13 common PSC-related symptoms during the previous month. They also shared information about their health history.
The goal was to better understand which symptoms people experience most often and whether certain patterns of symptoms appear in groups of patients.
Most common PSC symptoms identified
Among the 126 participants, several symptoms were reported by a majority of people. The most common included:
- Fatigue (extreme tiredness) – 83%
- Daytime sleepiness – 73%
- Liver pain – 63%
- Brain fog or cognitive difficulties – 63%
- Anxiety – 63%
- Sleep problems – 63%
- Itching – 62%
The findings show that many people with PSC experience multiple symptoms at the same time. These symptoms can affect both physical and mental well-being.
Different levels of PSC symptoms
Researchers found that patients fell into four general groups based on how many symptoms they experienced:
- Low symptom group – few symptoms
- Moderate symptom group – several symptoms
- Moderate + distressed group – moderate symptoms along with emotional distress
- High symptom group – many symptoms and greater overall impact on daily life
People in groups with more symptoms also reported worse overall physical and mental health.
Further PSC symptom research needed
More than 60% ofadults with PSC report symptoms such as fatigue, daytime sleepiness, liver pain, brain fog, anxiety, sleep problems, and itching within a single month. Researchers identified four different symptom patterns, but larger studies are needed to confirm these patterns and better understand how they can guide patient care and improve health outcomes.
For more information on the survey methodology and findings, go to Symptom profiles among adults with primary sclerosing cholangitis identifies low, moderate and high burdened groups. Below is the survey summary poster.
