What was the study about?

EASL Congress 2026 News: Results of a multinational study laid bare the extensive physical, emotional, and social toll experienced by individuals living with primary sclerosing cholangitis (PSC). The research specifically measured how common symptoms disrupt daily life and well-being, providing clear data on the day-to-day challenges faced by our patient community.

We would like to extend our heartfelt thanks to all the patients who took the time to participate in this survey and interviews; your contribution is vital to ensuring the true impact of PSC is recognised by researchers and clinicians worldwide.

How was it done?

Researchers created an online survey with the help of patient charities (including PSC Support. They collected data from individuals in the UK, the US, Italy, Germany and France, comparing two groups of people:

• 165 patients with PSC who were currently experiencing itching.
• 165 people from the general public who did not have PSC, carefully matched to be the same age and sex as the patients.

They also conducted interviews with people affected by PSC to look further into each topic.

What were the key findings?

• Moderate to Severe Itching
• • The average itch score for people with PSC was 5.2 (scored on a scale of 0 to 10, where 0 means no itch and 10 means the worst itch imaginable).
  • 78% of people with PSC had moderate to severe itch (in the previous 7 days) compared with 42% of the general population.
• Fatigue and Lifestyle Changes: Fatigue is a major burden, with nearly two-thirds (61%) of patients reporting that they had to make changes to their daily lifestyle just to cope with how tired they felt.
• Impact on Work: 
  • The symptoms of PSC severely disrupted patients' professional lives, with nearly half of the respondents reporting that they’d had to make changes to their employment because of PSC.
  • Nearly two thirds of respondents with PSC experienced physical or psychological problems at work in the previous 4 weeks
  • Longer-term sickness absence (lasting more than four weeks) was more common among people with PSC (43%) compared with the general population (19%).
• Link Between Itch and Fatigue: The study found a modest but significant link between itching and tiredness. Patients who suffered from more severe itching also experienced higher levels of fatigue.

Conclusion

The study highlights PSC as a condition that carries a heavy physical, emotional, and social burden. It shows that life-disrupting symptoms like itching and fatigue are common and are not being successfully managed by the treatments currently available. 

There is an urgent need for effective and lasting treatments for PSC that improve both disease progression and health-related quality of life and symptoms.