Overlooked Symptoms in Autoimmune Hepatitis Negatively Impact Many Facets of Life

Abstract

Background Significant reduction in quality of life among patients with autoimmune hepatitis (AIH) patients has been observed in several studies. While acute symptoms associated with AIH have been well described, little is known about the overall impact of living with AIH on patients’ quality of life. The aim of this qualitative descriptive study was to describe the impact of AIH and associated symptoms on quality of life from the perspectives of patients living with AIH. Methods Patients from Autoimmune Hepatitis Association support groups were recruited to participate in one of five online focus groups conducted between August and September 2020. After enrollment, patients were asked to complete a brief demographic and disease history questionnaire. A single moderator conducted interviews with each group guided by seven questions focused on the impact of AIH on the participants’ quality of life. Each session was recorded, transcribed, and verified. Content analysis was used to summarize the participants’ responses. Results The participants’ discussed three overarching topics: (a) symptoms of AIH and medication side effects, (b) the impact the disease and symptoms/side effects on five domains of quality of life (work life, relationships with friends and family, social life, leisure activities, and diet and exercise) and (c) interactions with healthcare providers and recommendations for future research. Conclusions Living with AIH can have profound effects on patients’ quality of life in several domains. Healthcare providers and the AIH research community should focus on developing further strategies that can improve the quality of life in persons suffering from AIH.

Diagnosis and management of autoimmune hepatitis

“…74 Fatigue, anxiety, depression, and a globally reduced quality of life are reported by the vast majority of patients with autoimmune hepatitis. [75][76][77] 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 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.…”

“…In addition, azathioprine increases the risk of hematologic malignancy and skin cancer 74. Fatigue, anxiety, depression, and a globally reduced quality of life are reported by the vast majority of patients with autoimmune hepatitis 757677. 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.…”

Characteristics and Long-Term Outcome of 535 Patients with Autoimmune Hepatitis—The 20-Year Experience of a High-Volume Tertiary Center

“…This matches with data from the current literature, where depressive syndrome occurred in 10.8% and was found to be five times more frequent in AIH patients compared to the general population [ 39 ]. In addition, several studies have shown that severe symptoms of depression and anxiety negatively impact the quality of life in AIH patients [ 39 , 40 , 41 ]. Therefore, detailed psychiatric assessment and complementary psychological treatment offer the chance to improve care and should therefore be offered to AIH patients.…”

Avenues within the gut-liver-brain axis linking chronic liver disease and symptoms

“…Neurological symptoms including fatigue, memory impairment, and sleep disturbances have been reported in patients diagnosed with autoimmune hepatitis, Primary Biliary Cholangitis (PBC), and Primary Sclerosing Cholangitis (PSC) ( Dyson et al, 2015 ; Zenouzi et al, 2018 ; Jones et al, 2023 ). The underlying mechanism governing development of these symptoms is not fully understood, and treatment options are currently an area of unmet need.…”