Rare but heard: using asynchronous virtual focus groups interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol

摘要

IntroductionPrimary sclerosing cholangitis (PSC) is a rare and chronic disease characterised by inflammation and fibrosis of the liver’s bile ducts. There is no known cause or cure for the illness, which often progresses to end-stage liver disease requiring liver transplantation. Symptoms of PSC can be very burdensome on those living with the illness, leading to restrictions in daily living, as well as a greater risk of colorectal and biliary tract cancers. Limited voices from lived experience suggest that living with PSC can cause considerable psychological distress. This study, therefore, aims to explore how the illness impacts the psychological well-being of those living with the illness, and those supporting them. It also aims to create a personalised psychological intervention to support all groups.