Health-related quality of life is impaired in people with autoimmune hepatitis: Results of a multicentre cross-sectional study within the European Reference Network

BACKGROUND AND AIMS: Impaired health-related quality of life (HRQoL) contributes to the overall disease burden in autoimmune hepatitis (AIH). This study aimed to evaluate HRQoL in people with AIH and to identify potentially modifiable factors associated with impaired HRQoL using validated patient-reported outcome measures. APPROACH AND RESULTS: Adult patients with AIH diagnosed at 12 European centers were enrolled in this prospective, cross-sectional study from July 2020 to June 2023. HRQoL was assessed using the Physical Component Score (PCS) and Mental Component Score (MCS) of the 12-item Short Form Health Survey (SF-12), and the European Quality-of-life 5-Dimension 5-Level (EQ-5D-5L) utility index score. Mixed-model regression analyses identified factors associated with HRQoL and somatic symptom severity. Controls were recruited from the general population in 5 European countries. A total of 882 patients with AIH (mean age: 51.0 y [SD: 17.0]; 76.4% female) and 178 controls were included. Physical but not mental HRQoL was impaired in the AIH group compared with the control group (PCS: 46.3 vs. 51.9, p <0.001; EQ-5D utility index score: 0.87 vs. 0.95, p <0.001). HRQoL was associated with severe somatic symptoms (PCS: β=-4.26, p <0.001), fatigue (PCS: β=-0.25, p <0.001; MCS: β=-0.25, p <0.001), and depression/anxiety (PCS: β=-3.37, p <0.001; MCS: β=-6.79, p <0.001). A complete biochemical response was associated with lower somatic symptom severity (OR: 0.69, p <0.05). CONCLUSIONS: People with AIH had impaired HRQoL compared with controls, particularly in terms of physical well-being. HRQoL scores are associated with symptom burden, encompassing both somatic and psychosocial dimensions.