PBC Disease Models

PBC Good Care Guide

Designed by PBC Ireland, the PBC Good Care Guide explains what good medical care for Primary Biliary Cholangitis should look like for most patients, from diagnosis through long-term monitoring. It helps patients understand the typical steps in PBC care, including treatment, monitoring, and symptom management. By understanding this pathway, patients can have more informed conversations with their healthcare team and feel more confident they are receiving appropriate care. Click here or on image below for more information.

PBC Activity Dial (PBC-AD)

The PBC Activity Dial (PBC-AD) is a simple visual guide developed by PBC Ireland to help explain how active Primary Biliary Cholangitis (PBC) may be at any given time. Instead of describing PBC as a fixed set of stages, the dial shows disease activity as a continuum ranging from well-controlled disease (green) to advanced liver disease (red). The position on the dial reflects factors such as liver blood tests, response to treatment, and overall risk of progression. Importantly, people with PBC can move between zones depending on how well treatment is working and how the disease responds over time. The goal of treatment is to keep the disease in the green zone, where liver tests are normal or near normal and the risk of progression is lowest.

PBC Symptom-Activity Discordance Model (PBC-SADM)

The PBC Symptom-Activity Discordance Model illustrates an important feature of Primary Biliary Cholangitis: how a patient feels and how active the disease appears biologically do not always match. In some people, liver blood tests may look relatively stable while symptoms such as fatigue, itch, or cognitive difficulties significantly affect daily life. In others, patients may feel well even though blood tests suggest ongoing disease activity. The model therefore maps PBC across two dimensions: patient-reported symptom burden and biological disease activity, creating four possible states: Stable and Coping, Invisible Suffering, Silent Risk, and High-Impact Disease. By highlighting these different patterns, the model helps patients and clinicians recognise that both biological markers and patient experience are important when assessing PBC and planning ongoing care.