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Partnering With Patients for PBC Care
Partnering With Patients for PBC Care: Actionable Strategies for HCPs

Released: April 22, 2025

Expiration: April 21, 2026

Gideon Hirschfield
Gideon Hirschfield, MA, MB BChir, FRCP, PhD
Activity Information

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Key Takeaways
  • Normalize the diagnosis of primary biliary cholangitis (PBC).
  • Don’t underestimate the importance of symptom management.
  • Promote and maintain coordinated care for your patients with PBC.

 


As a hepatologist, I believe that expert care for patients with primary biliary cholangitis (PBC) comes, in part, from listening closely to those who live with the condition. In a recent conversation with a liver transplant recipient and PBC advocate, I was reminded how listening to what our patients experience can lead to better care. 

Here are several actionable strategies from that conversation that all healthcare professionals (HCPs) can incorporate into their approach to PBC management. 

Communicate Clearly at Diagnosis
For patients, a PBC diagnosis often leads to a moment of fear and confusion. Many might wonder: Will I die? Will I need a transplant? How will this change my life? Is there a cure?

One of the most important things we can do early on is to normalize the diagnosis. I reassure each patient that PBC is not their fault—it's a result of complex interactions between genes and the environment. We should also reassure patients that effective treatments are available to prevent the progression of liver disease, that we can try to manage symptoms, and that we will continue to ensure that the rest of their healthcare continues to be good. 

Address More Than Just the Liver
Too often, we hear from patients that their primary care is disrupted because HCPs are unsure how PBC and other health issues might affect one another. Let’s change that narrative. Statins, acetaminophen, and agents that address menopausal symptoms are not off-limits in people with PBC. We need to help patients continue managing their overall health, and reassure other HCPs that safe, coordinated care is not only possible, but essential. 

Focus on Symptoms
While we center our attention on liver enzymes and treatment response, patients may live daily with fatigue and itching that can be debilitating. These symptoms are real, chronic, and often overlooked. Taking time at each visit to ask about fatigue, sleep quality, and itch intensity—even by using a simple 0 to 10 scale—can validate the patient's experience and lead to better care planning. 

Don’t Be Discouraged by Unsolved Problems
As HCPs, we shouldn’t feel threatened because we can’t answer every question or address every symptom. In my experience, the majority of patients understand that not all symptoms, like fatigue or pruritus, can be addressed, but there should be chances to talk about them, quantify them, and put them into context. 

Above all, HCPs should aim to create opportunities for each patient to feel comfortable asking questions. Each of us may approach this differently, and yes, it’s difficult to carve out additional time in a busy clinic, but sometimes we must put everything else aside for a moment—including the computer screen—and listen. 

Consider Work, Finances, and Daily Life
What I’ve heard from patients is that they aren’t just living with a liver disease—they’re raising families, working jobs, and managing bills. Ask about their job and how it is affected by their symptoms. Ask what support they need. Address affordability of medications and connect them early to patient assistance programs that they might not be aware of. These are small efforts that can help establish and build trust. 

Signpost to Support Groups
Support groups provide community, education, and empowerment. Whether it’s the American Liver Foundation, the PBCers Organization, or local PBC chapters, connecting patients to these networks can make a profound difference in how they understand and cope with the disease. 

PBC may be rare, but it offers HCPs opportunities to keep the human connection in medicine. By listening to our patients and treating them as partners, we not only improve outcomes—we improve lives. 

Your Thoughts
What additional strategies do you use to establish and build trust with your patients? What questions have you found insightful when caring for patients with PBC? Join the discussion by posting a comment below.