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

Abstract

Background: Recent data show that patients with autoimmune hepatitis have significantly reduced quality of life and that corticosteroids (still central to therapy) carry marked side effects. This study explored the patients’ experience of autoimmune hepatitis and its treatments; aspects that are key to understanding how we can develop safe and effective new approaches to therapy. Methods: An anonymised, internet-based survey was conducted between December 2019 and January 2020. Data were collected about patient demographics, treatments, side effects, impact on day-to-day life, sources of support and attitudes towards autoimmune hepatitis. Semi-structured interviews were then 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. Findings: A total of 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 with new and/or improved treatments. Only 18·7% (31/166) reported access to a specialist liver nurse and nearly half were involved in support groups. Data from the interviews and survey suggested that major issues were stigma in liver disease, loss of control and fatigue. Interpretation: This study provides insights into the realities of living with autoimmune hepatitis. There are clear issues with 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. The willingness of patients to participate in clinical trials is a positive finding and suggests that trials are achievable provided they have the right design and clinical endpoints. Funding: No funding to declare. Declaration of Interest: Dr Jessica Katharine Dyson has received speaker fees from Dr Falk Pharma and Intercept Pharmaceuticals. MISSING ALL OTHER AUTHORS. Ethical Approval: MISSING