The importance of personalized care to empower patients with PBC 

The importance of personalized care to empower patients with PBC 

The importance of personalized care to empower patients with PBC 

At the European Association for the Study of the Liver (EASL) congress, leading liver experts discuss the importance of proactive, personalized care and shared decision-making during consultations. A personalized care approach begins by listening to the patient’s feelings and needs, which can result in improved outcomes and quality of life for people living with primary biliary cholangitis (PBC). 

PBC is a rare and chronic autoimmune cholestatic liver disease with prevalence increasing worldwide.1-4 PBC causes chronic inflammation of the bile ducts. This leads to a build-up of bile and toxins in the liver (cholestasis), which results in scarring of the liver tissue (cirrhosis) and eventually liver failure.5,6 It can significantly impact a person’s quality of life (QoL) and, if left untreated, can result in the need for a liver transplant, and even premature death.2 Unfortunately, many people living with PBC describe that they feel unheard or excluded from the planning of their care.  

Wendy, who lives with PBC, describes the importance of involving patients in the care plan. “Doctors have never explained to me why they actually monitor the blood tests or what the numbers mean. If the patient understood the tests, their levels, and what it all means, they could better manage their PBC,” she shared. Wendy added “When I go and see the consultant, I would like to be listened to and understood. Just to listen to how I feel. Many people go to consultations and talk about various symptoms, but the consultant focuses only on PBC. However, PBC can trigger multiple symptoms and affect many aspects of life.”  

You can hear Wendy’s full story on the importance of individual’s involvement in their patient care plan to be part of the management of PBC, by viewing the full video below. 

“To develop an effective care plan for someone living with PBC, healthcare professionals must consider various perspectives, such as the risk of liver disease progression, the debilitating impact of PBC symptoms, and overall QoL. By embracing an individualized approach to PBC management, healthcare providers can better manage all aspects of the disease and its impact on daily life. This involves asking questions to understand the full extent of how PBC affects each patient and ensuring that patients feel empowered to express their experiences and fully grasp their care plans. When patients are heard and actively involved in their care plans, the complex and unique needs of people living with PBC can be addressed more effectively,” said Dr. Mark Swain, Professor of Medicine and Head of the Division of Gastroenterology and Hepatology at the University of Calgary.  

The Ipsen-sponsored symposium at the EASL congress, looks to address key challenges in managing PBC from both patient and physician perspectives. The panel discuss the path to proactive, personalized care in PBC and the importance of involving patients in treatment decisions.  


  1. Lv T, et al. J Gastroenterol Hepatol. 2021;36(6):1423–1434. 
  2. Galoosian A, et al. J Clin Transl Hepatol. 2020;8(1):49-60. 
  3. Lindor KD, et al. Hepatology. 2019;69(1):394-419. 
  4. Kumagi T & Heathcote EJ. Orphanet J Rare Di. 2008;3:1. 
  5. Younossi ZM, et al. Am J Gastroenterol. 2019;114(1):48–63. 
  6. Hirschfield GM, et al. Expert Rev Gastroenterol Hepatol. 2021;15(8):929-939 

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