Background Data show that patients with autoimmune hepatitis have significantly reduced quality-of-life and that corticosteroids carry marked side effects. Aims This study explored patients’ experiences of autoimmune hepatitis and its treatments; key aspects for developing safe and effective new approaches to therapy. Methods An anonymised, internet-based survey collected data including patient demographics, treatments, side-effects, impact on day-to-day life, sources of support and attitudes towards autoimmune hepatitis between December 2019–January 2020. Semi-structured interviews were conducted with 13 patients to further explore their support networks, treatment experiences and health priorities. Descriptive and quantitative analyses were undertaken using R and free text responses were subject to thematic analysis. Results In total, 270 survey responses were received (median age 55 years and 94% female). Perceived medication side-effects were reported by 66% (169/257) and 73% responded negatively about their experience of corticosteroids. The majority (62·3% [(109/175]) would ‘definitely’ or ‘probably’ consider clinical trial participation to improve their care. Only 18·7% (31/166) reported access to a specialist liver nurse and nearly half were involved in support groups. Interview and survey data suggested that major issues were stigma, loss of control and fatigue. Conclusions This study provides insights into the realities of living with autoimmune hepatitis with clear issues around lack of support networks, need for patient empowerment and stigma surrounding liver disease. Patient priorities are better therapies to slow disease progression, avoiding corticosteroids and minimising side-effects. Patient willingness to participate in trials suggests that they are achievable provided they have the right design and clinical endpoints. Supplementary Information The online version contains supplementary material available at 10.1007/s10620-022-07525-5.

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Mean SF-36 subscale scores were available in 6 studies (633 patients). Pooled analysis indicated greater patient-control differences in the physical subscales GH and RF (figure 1). PCS scores were reduced more than MCS scores in four studies.In a case-control study, 11% (n=103) patients with AIH had PHQ-9 scores indicating clinically relevant depression (PHQ-9>10), significantly more than controls (p<0.001). Severe anxiety (GAD-7>15) was more common in AIH vs. controls in this study (p=0.006) and STAI scores were higher (STAI1 p<0.001, STAI2 p=0.04) in another.Four studies compared disease activity and QoL, one of which found an association. Seven studies looked at association of cirrhosis with QoL, three found impaired physical (not mental) health, with no association in four. In two studies reporting comorbidities, these correlated with worse SF-36 physical subscales (RP, BP, GH). There were associations (one study each) between corticosteroid use and lower EQ-5D-5L Utility Index, with depression (PHQ-9), and with worry scores (CLDQ). Conclusions Patients with AIH have impaired QoL compared to the general population, in both physical and emotional components. Studies to date are heterogenous and it is difficult to compare results. Further research is needed to fully explore the impact of AIH on QoL.