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Quality of Your PSC Care

Quality of PSC Care

Survey Results

From October 2021 to January 2022 we ran a survey with the ERN RARE-LIVER network. 939 people with PSC responded, telling us about the quality of their PSC care and about the monitoring and tests that they routinely have.

This was an important survey because while many people with PSC experience first class healthcare, this is not the case for everyone. PSC is a complex disease and everyone affected should have care that follows national or international guidelines. Guidelines are written by experts and contain recommendations about the necessary tests and monitoring people with PSC should have.

The responses showed us that care was suboptimal for some, and internationally agreed guidelines about the care of PSC are not universally followed. Given the serious nature of complications associated with PSC, it is vital for patients that their PSC is managed and monitored properly, that is, that guidelines are followed.


What to do if you think you're not getting the right care

Our Routine Care information tells you what to expect and when. If you are not getting this, it is important to ask why. Sometimes pressures on the NHS mean that important tests are delayed and in March, Dr Yeoman told us some effective ways to handle this:

Confidence in care

Just over half of our respondents totally or mostly agreed that they were confident in the medical care they received for PSC  (55%). Lack of confidence in the care was reported by 9%. There were no obvious differences in confidence in care between age groups.

Information Needs

When you have a rare disease, reliable information about it can be difficult to find. The charts below show what proportion of respondents wanted information on which topics.

Click on the buttons and links next to the charts below for information on that topic:

What will happen to me
How I can improve my health
The disease
Liver transplantation
Reasons for tests, scans, colonoscopies, etc
PSC and pregnancy
Transferring from paediatric care to adult care ('transition')

Contacting your PSC doctor

For good care, we believe it is vital that you have a way of contacting your PSC doctor or team. The majority (59%) reported that it was very easy or quite easy to contact their liver doctors/team. 23% found it neither difficult nor easy. 16% found it difficult or very difficult.

When you receive your clinic letters, you should be able to find contact details at the top of the letter. This might be the nursing team, the consultant's secretary or in some cases, the consultant themselves. Please note that the email box or number may not be manned 24/7 and is not intended for emergency situations.

Tests and procedures

When you have PSC, it is important that you are monitored correctly, meaning that you get the right tests and procedures at the right times. Our survey results show that this is not happening. If you are not getting the tests and monitoring that you need, do not be afraid to ask your doctor why. If you are in the UK, our PSC App gives you information about the routine tests needed for PSC.

Liver stiffness

The 2022 EASL PSC Guidelines recommend liver elastography and/or serum fibrosis tests at least every 2 to 3 years. Nearly a quarter of respondents had never had elastography (i.e. FibroScan or MRE).

Liver, bile ducts and gall bladder

2022 EASL PSC Guidelines recommend liver ultrasound and/or abdominal MRI/MRCP is recommended every year. Nearly a quarter of the people in our survey did not have this.


A colonoscopy with biopsies is recommended at the time of PSC diagnosis. 92% had had a colonoscopy but 8% had not. If we estimate that there are a minimum of 3,500 people with PSC in the UK, this means that as many as 280 have never had a colonoscopy.

Bone density scan

2022 EASL PSC Guidelines recommend recommend that assessment of bone mineral density is undertasken in all people with PSC at the time of diagnosis using dual energy X-ray absorptiometry (DEXA). Only half (51%) of the people in our survey had had this scan.

Participation in research

Initial expert consultation for people with PSC at diagnosis and referral for those with symptomatic and/or progressive PSC to an experienced centre with ready access to PSC clinical trials and a dedicated multidisciplinary team are recommended in the 2022 EASL PSC Guidelines.

41% of people in our survey had been offered participation in research, meaning two out of three people hadn't. Given these numbers, for now, the onus is on us the patients to ask about research opportunities. The ONLY way we will get treatments is through research and the more people involved, the quicker we will get there.

participation in research offered


While PSC does not currently have a proven treatment to slow it down, there are various medicines to manage symptoms.

UDCA (urso)

In contrast to earlier guidelines, the use of medium-dose UDCA (15–20 mg per kg body weight per day) is now stated as a treatment option in PSC in the EASL 2022 Guidelines. This is in keeping with current practice in many centres. Interestingly only half of people with PSC are treated with UDCA in the UK yet in countries like Germany, Netherlands and France, it is nearer to 90% reflecting very different practices across Europe.

are treated with UDCA (ALL)
are treated with UDCA (UK ONLY)


Long-term use of antibiotics is not recommended in the 2022 EASL PSC Guidelines for treatment of PSC in the absence of recurrent bacterial cholangitis. The antibiotic 'vancomycin' was rarely used and mostly reported in children with a decreasing trend of usage in older age groups.

children (7 - 15 years)
young adults (16 - 25 years)
adults (26 - 60 years)
seniors (over 60 years)

Itch medicines

Our survey found that two out of three people with PSC had experienced itch, only half had received any medication for it.

The 2022 EASL PSC Guidelines recommend that PSC itch is treated with bezafibrate or rifampicin. Antihistamines were taken by 27%, cholestyramine by 21%, rifampicin by 13% and bezafibrate by 6.5% of people who experienced itch.

Antihistamines (27%)
Cholestyramine (21%)
Rifampicin (13%)
Bezafibrate (6.5%)
Walmsley, M, Tornai, D, Cazzagon, N, et al. Patient-reported quality of care in primary sclerosing cholangitis. Liver Int. 2023; 00: 1- 9. doi:10.1111/liv.15650