Impact of PBC on Quality of Life


Steven Flamm, MD, FAASLD, FACG, reviews the disease burden of primary biliary cholangitis on the patient and their family. He also comments on the impact PBC has on a patient’s mental health.

Kris Kowdley, MD, FACP, FACG, AGAF, FAASLD: Because these patients have cholestatic disease, fat-soluble vitamin deficiencies, hypercholesterolemia, xanthomas, and xanthelasmas are some things we often see, and they’re often very jaundiced. From a burden-of-disease perspective, Steve, you alluded to pruritis or fatigue. How much of an impact does it have on quality of life for patients with PBC [primary biliary cholangitis]?

Steven Flamm, MD, FAASLD, FACG: From my experience with this disease—and others too, but this 1 in particular—there are 2 types of quality-of-life issues. First, what are the symptoms? As you mentioned earlier, half to more than half of patients don’t have profound symptoms. In patients who have symptoms—fatigue and pruritis—they can be very severe and really impact the quality of life. Of course, this impacts not only the patient’s quality of life but also their families, significant others, work, and coworkers. Symptoms can be a huge problem.

Of course, if patients have advanced livers disease and develop ascites, encephalopathy, and variceal bleeding, that also greatly impacts the quality of life. Though there’s the emotional side too. Many of these patients aren’t destined to develop cirrhosis. We have effective therapies, and they’ll do over the long term. But patients read the internet, and when you about this disease on the internet, you see a lot of bad things. They’re very depressed. They are more fatigued and somewhat sullen about their long-term prognosis. Patients can be very much dragged down by this diagnosis. Remember, it’s an incurable disease. As practitioners, we have to take into account all these facets and help patients—explain things to them and optimize their clinical outcomes.

Kris Kowdley, MD, FACP, FACG, AGAF, FAASLD: That’s a great summary. I’ll add that we try to teach medical students to differentiate between organic fatigue, where the patient runs out of energy over the course of the day, and fatigue from depression or anxiety, where it’s present all the time. It’s frequently interconnected, with 1 leading to the other. That’s important to keep in mind.

Transcript edited for clarity

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