Results From the Voice of PBC Patient Survey

Carol Roberts, President of The PBCers Organization, discusses results from the Voice of PBC patient survey.  PBC is a chronic, progressive autoimmune liver disease in which the bile ducts become inflamed and damaged. This leads to the buildup of bile and causes scarring, cirrhosis, and eventual liver failure. Many people do not have symptoms when they are first diagnosed. Early symptoms may include fatigue, pruritus, and abdominal pain. As the disease progresses, people with PBC may develop weakness, nausea, diarrhea, edema, bone and joint pain, jaundice, dark urine, and xanthomas. It is thought to be caused by a combination of genetic susceptibility and environmental triggers. In recognition of PBC Awareness Month, The PBCers Organization released results of its national Voice of PBC survey. The survey captured the lived experience of 210 patients living with PBC, revealing a heavy and often invisible burden. In terms of the physical impact of disease, 75% of respondents received a diagnosis after an abnormal routine blood test, with no prior warning symptoms. Among patients who did notice symptoms prior to diagnosis, the most commonly reported were fatigue, itching, dry eyes and mouth, and brain fog. 57% reported severe or some impact on their physical well-being, 87% had at least one additional autoimmune or related condition alongside PBC, and 45% saw improvement in their symptoms since starting current treatment. This survey also revealed the impact of PBC on patients’ emotional wellbeing, with 53% indicating that fear of the future and uncertainty about their long-term health is their defining emotional response. 49% felt misunderstood, 44% reported increased anxiety, and 33% reported having depression or low mood. Additionally, 51% responded that this emotional impact was severe. Finally, the social impact of the disease highlights the stigma surrounding PBC. 60% of patients reported being told that they did not look sick and 53% had dismissively told their condition is caused by alcohol or drugs. This fear of being misjudged has led to only 30% feeling very comfortable disclosing their diagnosis to coworkers, compared to 67% with immediate family. Additionally, 48% reported severe or some impact on their social interactions and 58% reported experiencing financial strain related to their PBC. These findings showcase the daily reality faced by patients with PBC and highlight the need to listen to patient voices and change the conversation around liver disease. For more information, click here. To learn more about PBC and other rare autoimmune conditions, visit https://checkrare.com/diseases/autoimmune-and-auto-inflammatory-disorders/ **Rare Discussions is produced by CheckRare**, the leading multimedia platform dedicated to advancing education, awareness, and innovation across the rare disease community. Explore additional physician interviews, podcasts, CME activities, and rare disease resources at **CheckRare.com**. Subscribe to the **CheckRare Podcast Network** for expert conversations, weekly news, accredited education, and the latest advances across the rare disease community. Part of the **CheckRare Podcast Network**: Trusted conversations, news, education, and expert insights across the rare disease community.