The Uniqueness of Liver Disease Care: Managing PBC
When you step into a career as a health care professional, there are many paths you can take. The type of care required from one specialty to the next may have some overlap, but there's a reason why specialists exist – to provide the tailored care individuals require.
This type of tailored care is the norm for nurse practitioner April Morris. She's spent 13 years working specifically with liver disease patients. From being a sub-investigator on several clinical trials, to developing medications to treat and improve various liver conditions, she's immersed in everything liver health.
Throughout her career, Morris has seen many patients suffering from various types of liver disease – some that are commonly-known, and others that are unfamiliar to most patients at their diagnosis. Morris recently sat down with HealthyWomen to discuss her experience treating patients diagnosed with primary biliary cholangitis (PBC), a rare autoimmune liver disease that affects the bile ducts in the liver, and one that falls into the "unfamiliar" category above.
PBC is unique in that it can sometimes take years to present symptoms and is often misdiagnosed. Having seen numerous PBC patients over the years, Morris shares her insights on how to provide the best care for PBC patients, because health care is never "one-size-fits-all."
Q: What have you noticed about PBC patients?
Morris: Most of the PBC patients I have come across are very sharp and really take the effort to educate themselves about this relatively uncommon disease. They quickly realize that this is a lifelong liver disease that could affect their quality of life, so they often proactively search for ways to combat this rare disease and connect with others who have PBC for support and guidance. From my experience, PBC patients usually ask many questions and make sure they have a good understanding of their disease.
Q: What are some of the challenges of caring for PBC patients?
Morris: Two of the most common symptoms of PBC—pruritus (itching of the skin) and fatigue—can lead to depression when severely expressed. Because no two patients are the same, helping them find ways to lessen the intensity of these symptoms can sometimes be difficult. Not impossible, but often there isn't a clear formula to follow. I usually try to help my patients by discussing potential coping strategies with them, such as:
Avoiding naps during the day, even if they are tired, so they can have more restful sleep at night.
Exercising, even if they think they don't have energy, because the mental benefits are just as powerful as the physical benefits.
Exploring over-the-counter medication, which for some may include several treatments, to help with pruritus; of course, patients should discuss taking any new medications directly with their health care professional first.
Q: What are some things that health care professionals can ask their PBC patients to do that can help improve their care?
Morris: Daily journal entries can reveal a lot about PBC patients. Ask them to track things like:
By looking for patterns in these details, sometimes we can uncover trends that will help manage some the most bothersome symptoms.
Additionally, I ask patients to keep track of their own alkaline phosphate levels (ALP), as it helps monitor the progression of the disease over time. Of course, health care professionals have this information, but I do encourage patients to keep their own log and to bring it to each appointment, so they can track along and feel empowered to manage their own health. I find the LivingWithPBC's app to be a great tool for tracking ALP levels.
Q: What other tools or resources do you recommend for PBC patients?
Morris: I encourage PBC patients to utilize patient support groups and educational websites, if they aren't already doing so. The PBCers is a great support group that I've found to be very helpful for patients. Community members provide information and guidance to one another online and in person. Sometimes it's helpful to speak to someone who can personally relate to what you're going through. As an example, here is a great story about a woman who is living well with PBC that health care providers can share with their PBC patients.
I also turn patients to LivingWithPBC.com, which offers detailed educational materials and videos that can help explain PBC and how they can manage their symptoms.
This resource was created with the support of Intercept Pharmaceuticals, Inc. and should not be construed to constitute medical advice. April Morris's opinions are her own.