The inter‐relationship of symptom severity and quality of life in 2055 patients with primary biliary cholangitis

BACKGROUND: Age at presentation with primary biliary cholangitis (PBC) is associated with differential response to ursodeoxycholic acid (UDCA) therapy. Younger‐presenting patients are less likely to respond to treatment and more likely to need transplant or die from the disease. PBC has a complex impact on quality of life (QoL), with systemic symptoms often having significant impact. AIM: To explain the impact of age at presentation on perceived QoL and the inter‐related symptoms which impact upon it. METHODS: Using the UK‐PBC cohort, symptoms were assessed using the PBC‐40 and other validated tools. Data were available on 2055 patients. RESULTS: Of the 1990 patients reporting a global PBC‐QoL score, 66% reported good/neutral scores and 34% reported poor scores. Each 10‐year increase in age at presentation was associated with a 14% decrease in risk of poor perceived QoL (OR = 0.86, 95% CI: 0.75–0.98, P < 0.05). All symptom domains were similarly age‐associated (P < 0.01). Social dysfunction was the symptom factor with the greatest impact on QoL. Median (interquartile range) PBC‐40 social scores for patients with good perceived QoL were 18 (14–23) compared with 34 (29–39) for those with poor QoL. CONCLUSION: The majority of patients with primary biliary cholangitis do not feel their QoL is impaired, although impairment is reported by a sizeable minority. Age at presentation is associated with impact on perceived QoL and the symptoms impairing it, with younger patients being more affected. Social dysfunction makes the greatest contribution to QoL impairment, and it should be targeted in trials aimed at improving life quality.