Quality of life in Dutch patients with primary biliary cholangitis: Discrepancies between patients’ perspectives and objective disease parameters

Aim This study aims to assess the health‐related quality of life (HRQoL) in a Dutch population of patients with primary biliary cholangitis (PBC) in relation to the prognosis and need for second line‐therapy, based on both objective disease parameters and patients’ perspectives. Methods In this cross‐sectional multicenter study, HRQoL was assessed by using the Dutch PBC‐40 according to objective clinical parameters and patients’ perspectives on treatment and prognosis. Results In total, 178/269 (66%) patients responded; mean age 61.2 (SD 9.9) years and 165 (92.7%) women. The PBC‐40 domain scores did not differ according to the GLOBE score response (p > 0.05 for all) or according to the POISE criteria (p > 0.05), except for the domain itch (p = 0.031). Patients who considered their survival to be impaired scored higher on all domains as compared to those expecting a normal prognosis (p