Time to Talk About Bile Duct Cancer Risk in PSC
Time to Talk About Bile Duct Cancer Risk in PSC
Patient Survey Results
We are pleased to share the results of the joint patient survey run by PSC Support and PSC Partners Seeking a Cure earlier this year. The survey focused on understanding patient knowledge of cancer screening and the communication around it. This information was presented as an abstract and poster at an important international liver research meeting this week (AASLD The Liver Meeting).
If you completed our survey - thank you. You are helping us advocate for better services for everyone with primary sclerosing cholangitis (PSC).
Background
We designed the survey to assess patients’ knowledge of bile duct cancer (cholangiocarcinoma or CCA for short) and how information about CCA is communicated.
This is important because people with PSC have an increased risk of CCA compared to the general population.
CCA is difficult to screen for and diagnose, but research is active in this area.PSC Support and PSC Partners are both funding research to develop non-invasive tests to accurately detect CCA.
We analysed 596 responses from around the world. The results highlighted significant gaps in communication with patients about CCA and inconsistency in monitoring for this cancer.
Communication Gap
Only half (51%) of the survey respondents reported that their medical team had had a proactive discussion with them about CCA risks and monitoring. A proactive discussion means the doctor or nurse brought up the topic without the patient having to ask first.
Discussion of test results was inconsistent; results from the MRCP scans were discussed with less than a third of those that had them (27%).
Knowledge Gap
Just over half (56%) of the respondents felt adequately informed about CCA when their medical team had proactively discussed the risk with them. Only 15% felt they had enough information when their doctor had not proactively discussed CCA risk.
Emotional Burden
Respondents consistently reported significant fear and anxiety regarding CCA risk. Sensitive discussions with healthcare professionals can play an important role in managing this emotional burden.
How the Management of PSC Should Change
These findings highlight that healthcare must change in the following ways:
- The PSC community must come together to implement appropriate global patient and healthcare provider education and communication programmes to support the delivery and use of existing and future tests to detect CCA.
- Healthcare providers must start to talk about CCA risk, how it will be monitored and how results are shared with PSC patients, and what support is provided.New, promising non-invasive tests and novel biomarkers for early CCA detection are anticipated. Current screening practices and patient education materials will need to be updated to match these advances.