Very little is known about what liver pain feels like for people living with chronic liver diseases, especially primary sclerosing cholangitis (PSC). Because of this, researchers lack good tools to measure PSC-related liver pain in clinical studies.
To create a pain measurement that truly reflects patients’ experiences, PSC Partners initiated a study to better understand how people with PSC describe and experience liver pain through a collaboration led by researchers from University of North Carolina and Duke University who bring specialized expertise in designing symptom measurement tools.
How the PSC liver pain study was conducted
Adults with PSC were recruited through the PSC Partners Patient Registry and liver specialists in the United States. Participants were first screened by phone to confirm they were experiencing PSC-related symptoms. Seventeen adults, representing a range of experiences, were selected and took part in detailed, one-on-one interviews. These interviews focused on symptoms experienced over the prior month, including liver pain.
Participants ranged in age from 27 to 65, with an average age of 43. Half were male, and participants came from diverse racial backgrounds. About 30% also had inflammatory bowel disease (IBD).
What PSC patient participants reported about liver pain
Out of the 17 participants, 10 identified liver pain as a major PSC symptom and described it in detail. Another three mentioned liver pain on their own during the interviews.
Most participants described liver pain as occurring in the upper right side of the abdomen, although it often spread around the side or into the back. Many described the pain as sharp or stabbing, while others described it as dull or achy. Sharp or stabbing pain tended to be short-lasting, while dull or achy pain often lingered. Liver pain could come and go, happen randomly, and usually did not seem to be triggered by anything specific.
The study concluded that dull/achy and sharp/stabbing liver pain may be more frequent and severe in symptomatic adults with PSC than previously recognized. The findings will help inform the development of PSC-specific liver pain measures for future PSC research studies.
For more information on the survey methodology and findings, go to “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”. Below is the survey summary poster.
