ABSTRACT Background Children with autoimmune liver disease (AILD) face unique challenges that may impair their health‐related quality of life (HRQoL). This multicenter, prospective, longitudinal study evaluated HRQoL over time and identified associated clinical factors. Methods A total of 162 participants from five centers completed at least one HRQoL assessment. Medical and laboratory data were abstracted within 3 months of each assessment. Fatigue and pruritus were reported at one center. Generalised linear mixed‐effects modelling was used to examine longitudinal associations between HRQoL and clinical variables. Results Participants reported the lowest HRQoL scores in school and emotional domains, while the physical and social domains were less affected. Compared to healthy children, participants with AILD reported lower overall HRQoL. Longitudinal analysis revealed that caregivers of participants with overlap syndrome reported higher emotional, social, psychosocial, and total scores. Across all AILD subtypes, children with AILD‐complications reported higher school scores. Prednisone use was associated with improved emotional scores, while azathioprine use was associated with lower social scores. Elevated alanine aminotransferase levels were associated with lower HRQoL scores, particularly in caregiver reports. Disease duration and presence of inflammatory bowel disease were not associated with HRQoL. In a single center subset, fatigue and pruritus were associated with lower HRQoL, and fatigue correlated with elevated liver enzymes and reduced rates of biochemical remission. Conclusion These findings highlight overall AILD‐related patterns in HRQoL rather than disease‐specific effects and underscore the multidimensional impact of AILD. Studies with disease‐specific cohorts and validated symptom instruments are needed to clarify subtype‐specific mechanisms, particularly those related to fatigue. Trial Registration NCT03178630, NCT05750498
Farr et al. (2026) studied this question.