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

Abstract

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.

Diagnosis and management of autoimmune hepatitis

“…78 Being cared for in a referral center and having a trustful doctor-patient relationship were recently shown to have a strong positive influence on the overall quality of life 79 -a clearly modifiable factor that should receive more attention and strongly argues for a structured care system allowing access to expert care for all patients with autoimmune hepatitis, as well as quality control measures of the care delivered. 80 Future interventional studies need to tackle these aspects of the disease as endpoints in a systematic way. They should consider the perceived wellbeing of patients with autoimmune hepatitis as a whole and not limit the focus to the hepatological aspects of the disease.…”

“…Depression seems to be partly associated with prolonged steroid use, but the frequency and degree of depression in autoimmune hepatitis suggest additional factors influencing the decreased quality of life 78. Being cared for in a referral center and having a trustful doctor-patient relationship were recently shown to have a strong positive influence on the overall quality of life79—a clearly modifiable factor that should receive more attention and strongly argues for a structured care system allowing access to expert care for all patients with autoimmune hepatitis, as well as quality control measures of the care delivered 80…”

Research gaps and opportunities in autoimmune hepatitis—Results of the international autoimmune hepatitis group research workshop 2022

“…Clinical investigator‐driven research has become difficult given the complex regulatory framework and lack of funding for research on AIH, although drug development for rare diseases has become more interesting for pharmaceutical industries in recent years. Although patients are very willing to participate in trials, as they believe that research is needed to improve treatment options, preferably corticosteroid‐free options, 75 low recruitment rates have resulted in the discontinuation of several studies. In addition, a number of trial programmes have been discontinued because of a lack of efficacy of the tested compound in the treatment of other autoimmune disorders.…”