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PBC Patient Care
Enhancing PBC Patient Care: Actionable Strategies for Healthcare Professionals

Released: March 04, 2025

Expiration: March 03, 2026

Sonal Kumar
Sonal Kumar, MD, MPH
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Key Takeaways

•    Start patient encounters with symptom discussions rather than biomarker reviews.
•    Encourage patients to track symptoms and engage in self-advocacy.
•    Address symptoms proactively with lifestyle modifications and structured support.
•    Integrate dietitians and support groups into care plans.


Patients with primary biliary cholangitis (PBC) face unique challenges that extend beyond normalization of their biochemical markers. By listening to patient advocates, here is what I have learned about what matters to patients and how we, as healthcare professionals (HCPs), can use actionable strategies to enhance care.

Ask About Symptoms and Quality of Life
As HCPs, we primarily rely on alkaline phosphatase levels and other biomarkers to assess disease progression. However, people with PBC are also concerned with how they feel day-to-day—specifically with their symptom of pruritus and also their energy levels, cognitive function, and ability to engage in daily activities.

To better address their needs, I now start my appointments with open-ended questions about symptoms rather than immediately discussing lab results. Asking about pruritus, fatigue, and cognitive function can provide valuable insights because these symptoms are common but often underappreciated. In addition, symptoms do not always correlate with disease stage. A person with normal lab test results may still experience a significant symptom burden, underscoring the need to prioritize symptom management alongside biochemical monitoring.

Encourage Self-advocacy
Empowering patients to track and communicate their symptoms can lead to more meaningful discussions and better care. Encouraging them to keep a symptom journal or list of concerns between visits allows for a more directed, yet comprehensive evaluation. It is also crucial to validate patient-reported symptoms. By fostering an environment where patients feel comfortable discussing issues beyond liver tests, we can build stronger therapeutic relationships. 

Enhance Multidisciplinary Care
PBC management extends beyond hepatology, and incorporating other HCPs into patient care can provide a more holistic approach. Connecting patients to dietitians, connecting them to resources for sleep hygiene, and providing other prescriptions for a healthy lifestyle can help address some of the concerns patients have regarding their physical, social, and mental well-being. Encouraging mental health through support groups can also help patients cope. 

Connect to PBC Support Groups
In PBC, there are many excellent organizations offering peer support such as the PBCers Organization, the PBC Foundation, and the Community Liver Alliance. HCPs should proactively refer patients to these patient advocacy organizations and online communities, where they can find education, resources, and emotional support. Encouraging participation in PBC-specific support groups allows patients to share experiences, learn coping strategies, and feel validated. This is especially important in PBC: Because it is a rare disease, most patients will not know anyone else with it or even have heard of PBC before.

Conclusion
I think these are all reasonable changes and not anything dramatic that we cannot incorporate in our practices—it just involves a little bit of tweaking to how we conduct our visits. By adopting a more patient-centered approach, HCPs can significantly enhance the care experience for people living with PBC. Prioritizing symptom discussions, empowering patients, and integrating support groups and multidisciplinary care can make a tangible difference in their quality of life.

Your Thoughts
How do you currently approach symptom assessment in patients with PBC? Are there strategies that you have found effective in managing fatigue and pruritus? Share your experiences and insights with your peers.