2025. AASLD The Liver Meeting Abstract and Poster: 4540: "IT'S MORE LIKE A DULL, ACHY PAIN THAT'S JUST CONSTANT": LIVER PAIN EXPERIENCES IN ADULTS WITH PRIMARY SCLEROSING CHOLANGITIS (PSC) TO INFORM MEASURE DEVELOPMENT

Authors: Donna Evon, Lauren Wright, Laura Mkumba, Nicole Lucas, Kaya Merkler, Ricky Safer, Joanne Hatchett, Rachel Gomel, Stephen Rossi, Mark Swain, Sasha Deutsch-Link, Bryce Reeve

Abstract:

Background: An in-depth understanding of experiences with liver pain associated with chronic liver disease is virtually non-existent, especially for individuals living with PSC. The development of a PSC-specific liver pain measure suitable for clinical trials relies upon understanding key characteristics of liver pain in this population.

Methods: Adults with PSC were recruited through the PSC Partners Patient Registry and hepatology experts in the U.S. Participants were phone screened for the presence of multiple PSC-related symptoms. Purposeful sampling was used to recruit a representative sample of 17 adults for in-depth qualitative interviews about key PSC symptoms experienced in the last month, including liver pain. Interviews were conducted virtually, audio-recorded, transcribed, and analyzed using NVivo software.

Results: Ten out of 17 participants who reported liver pain as a prominent PSC symptom described their experiences in detail, while another three spontaneously mentioned liver pain during their interviews. Participants were, on average 43 years old (range: 27-65), 50% male, 60% white, 30% black, 10% Asian and 30% had inflammatory bowel disease (IBD). Participants’ experiences of their liver pain are found in the Table below. Participants described the location of PSC-associated liver pain generally in the right upper quadrant area, but said it can extend around the side and back. Eleven of 13 described liver pain as “stabbing” or “sharp.” Eight described their pain as “achy” or “dull.” The sharp/stabbing pain is typically brief, while the achy/dull pain is more persistent. All but one participant used the word “pain” to describe their sensations. Liver pain can “come and go” intermittently, happens at random, and seems

unassociated with specific triggers. Some reported pain daily, others weekly, and most reported pain occurring outside of cholangitis attacks. Participants were able to differentiate PSC-related liver pain versus abdominal pain from other causes (including IBD) based on location and type of pain, timing, response to medications, and laboratory/clinical markers. Liver pain interfered with sleep and caused anxiety, but relative to fatigue and brain fog, it appears to interfere less with daily functioning. Participants tended to “push through it.”

Conclusion: Dull/achy and sharp/stabbing liver pain may be more frequent and severe in symptomatic adults with PSC than previously recognized. These in-depth qualitative findings will inform the development of a de novo PSC-specific liver pain measure, inclusive of heterogeneity of experiences, and suitable for future PSC research studies.