Patient Priorities in Autoimmune Hepatitis: The Need for Better Treatments, More Education and Challenging Stigma

Charlotte Lloyd, Jessica Leighton, Lin Lee Wong, Anna Goulding, Ann Brownlee, Penney Gray, Emma Culver, Neil Halliday, Doug Thorburn, Michael A. Heneghan, David E. J. Jones, Catherine Exley, Jessica K. Dyson*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

3 Citations (Scopus)


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.

Original languageEnglish
Pages (from-to)87-97
Number of pages11
JournalDigestive Diseases and Sciences
Issue number1
Early online date17 May 2022
Publication statusPublished - 1 Jan 2023
Externally publishedYes

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