Impact of itch on quality of life in people with primary biliary cholangitis: A plain language summary

What is this summary about? This is a summary of an article about people with primary biliary cholangitis (PBC) who also suffer from itch. PBC is a disease that affects the liver; itching is common in PBC and can dramatically reduce a person's quality of life. People in a study called TARGET-PBC filled in surveys about their PBC symptoms, including itching, and the effects the symptoms had on their lives. Information was also collected on the medications people were taking for their PBC and itch. What were the results? Out of 211 people with PBC who filled in the surveys, 170 (81%) had itching. More than one-third of them (37%) had itch that was clinically significant. Clinically significant itch has been defined as an itch that sometimes affects a person's sleep, makes them scratch until their skin is raw, or causes embarrassment. These people would benefit from a discussion about treatment options. Clinically significant itch was linked with worse scores on the surveys, meaning poorer quality of life. This link was true for all areas looked at, but particularly for social aspects and cognition, such as memory and concentration. Sleep was affected in most people with clinically significant itch and there were high levels of fatigue. People with clinically significant itch were more likely to be taking anti-itch medication compared with those with mild itch, but onethird of them still had not received any treatment for itch. When itch medication was used, the stepwise guidelines suggested by specialty professional societies was not usually followed. What do the results mean? Itching is problematic for the people in this study. Those with clinically significant itch have a worse quality of life compared with those with mild itch and this affects all areas of their life measured. The study also shows that people do not always receive medication for their itch, and that treatment guidelines are not always followed.