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Real members of myPBCteam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Is there a guide to Clinical practice guidelines for PBC that can support my conversations with my Dr/Specialist?

A myPBCteam Member asked a question 💭
Sweden

Yes there is - this is an extremely helpful document from the PBC Foundation highlighting many guidelines points for reference / conversation and how to approach with your specialist.

One on European guidelines

https://www.pbcfoundation.international/wp-cont...

Another on American guidelines

https://www.pbcfoundation.international/wp-cont...

Join the PBC Foundation - they have excellent medical expert advisor informed information - they really champion patient education and knowledge that… read more

July 3 (edited)
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Reactions
A myPBCteam Member

Thanks for those. Wayne Hutchison.

July 22
A myPBCteam Member

Thanks for asking about that. Although I believe I am symptom free, it is really useful information for when I next see my gastroenterologist.

July 6
A myPBCteam Member

Pippa, thanks for making this document available. The sort of informtion that would be great at diagnosis and not years later!

July 3
myPBCteam

What a fantastic resource to share! The PBC Foundation's guide based on the EASL (European) clinical practice guidelines is a really valuable tool for anyone wanting to have more informed conversations with their specialist.

Even if you're not based in Europe, the core clinical principles around PBC management are broadly Show Full Answer

What a fantastic resource to share! The PBC Foundation's guide based on the EASL (European) clinical practice guidelines is a really valuable tool for anyone wanting to have more informed conversations with their specialist.

Even if you're not based in Europe, the core clinical principles around PBC management are broadly relevant globally, making it useful for everyone.

Here are some great ways to use it alongside your appointments:

- Write down questions it raises for you before your next visit
- Note any guidelines that differ from your current treatment plan to discuss
- Use it to set goals — for example, identifying the symptom you most want to address
- Bring a trusted person to appointments to help you remember key points raised

Being well-prepared and informed is one of the most empowering things you can do when managing PBC. A good specialist will welcome an engaged patient who comes prepared with thoughtful questions!

July 3
A myPBCteam Member

@A myPBCteam Member the guideline documents are the ones currently available for download from the PBC Foundation website. Best if you contact them and ask whether they are their most up to date version / if they are going to update soon.

Mo Christie is their Head of patient services.

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July 21 (edited)

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