Cholangiocarcinoma (CCA) Survey Results
- Brian Thorsen
- 2 days ago
- 3 min read
In Spring 2025, the Registry, in collaboration with PSC Support, conducted the PSC and Cholangiocarcinoma (CCA) Patient Survey. This multinational survey collected information on current practices of monitoring for CCA (also known as bile duct cancer), educational resources used by patients, and communication between patients and providers regarding CCA. Results from the survey were presented at AASLD’s The Liver Meeting 2025 in Washington, DC. With 623 responses in just 7 weeks between the Registry and PSC Support, it is clear this topic is of high importance to the community. Thank you to everyone who participated in this survey!
Background: CCA Risk and Surveillance Guidelines
People living with PSC are at a 400-fold higher risk for developing CCA than the general population: between 9% and 20% of people with PSC will develop CCA at some point in their lifetime. Even after liver transplant, CCA risk remains elevated, in part due to the chance of developing recurrent PSC.
Unlike other liver cancers, CCA is not associated with the severity of liver fibrosis and disease and can happen at any time point after diagnosis. Therefore, ongoing CCA surveillance testing and early detection is an important part of patient care and may improve clinical outcomes. Early detection of CCA can lead to more treatment options, including potentially transplant, and a quicker connection to important support for cancer treatment.
AASLD and EASL guidelines* recommend annual surveillance for CCA through MRCP (MRI of the liver, bile ducts, and pancreas) or ultrasound imaging. AASLD further specifies MRCP over ultrasound when possible. Doctors may also order blood tests for CA 19-9, a protein that can be elevated in the presence of CCA. The guidance does not make a recommendation for or against CA 19-9 testing, as the test has somewhat limited diagnostic power. More frequent follow-up imaging is recommended in cases of suspected (potential, but not confirmed), CCA.
Through the International Collaborative Research Network, PSC Partners is supporting leading researchers who are working to develop and validate a new blood test for CCA. This test may allow for earlier, less invasive, and more accurate detection of CCA in PSC patients. Read more about the BIOMAP-PSC Project here.
Patient-Provider Discussion of CCA
Survey results showed that 50.8% of providers proactively discussed CCA risk with their patients. Proactive discussion from providers was strongly associated with patient knowledge on CCA. Overall, only 36% of respondents reported they had enough information on CCA. For patients in the United States, proactive discussion was also associated with adherence to the recommended use of annual MRCP.
When CCA is proactively discussed without patient prompting, 56% of patients report adequate CCA knowledge.
When healthcare providers have not proactively discussed CCA risk, 15% of PSC patients report adequate CCA knowledge.
Healthcare providers in North America were more likely than providers in Europe to proactively discuss CCA.
Hepatologists were more likely than gastroenterologists to proactively discuss CCA.
Patient Perspectives
As CCA is a serious topic but does not affect everyone, preferences on CCA discussion and management can vary greatly. Among survey respondents, 24% brought up significant fear or anxiety regarding CCA, and 5% of patients mentioned not wanting to discuss CCA until it becomes necessary. Here are a few standout quotes from de-identified survey responses:
“It should not be underestimated how scary this sword hanging over the head of PSCers is.”
“If I haven’t been diagnosed with it I don’t really need to discuss it with anyone. All it causes is anxiety.”
“Getting CCA is a constant worry. I used to think it was an instant death sentence, but being a part of [PSC groups], I now realize that that is not necessarily true.”
“It's a lingering risk, but it's helpful that my doctors have shown both a proactive approach to detection, and openness to discussing the real risk, but tempered by a calm approach to manage my expectations, and not excessively worry about something that hasn't happened yet.”
It’s important to note you can shape the conversation around CCA. While only 68% of US patients reported annual MRCP (a key part of recommended management of CCA risk), you can discuss with your doctor whether it is appropriate for you to receive this imaging. PSC Partners is committed to building additional educational resources for CCA, along with other common issues associated with PSC.
For more information about CCA, from education to support for patients and caregivers, please visit the Cholangiocarcinoma Foundation at cholangiocarcinoma.org.
* Sources: AASLD practice guidance on primary sclerosing cholangitis and cholangiocarcinoma (2022); EASL Clinical Practice Guidelines on sclerosing cholangitis (2022)
