OBJECTIVES: This study aimed to understand, conceptualize, and document the experience of chronic hepatitis B (CHB)-associated fatigue and depression amongst individuals living with CHB in the United States (US).

METHODS: Researchers conducted 45-minute concept elicitation interviews with people living with CHB in the US, who also had self-reported experiences of fatigue and/or depression. Transcripts were analyzed using qualitative content analysis.

RESULTS: A total of 14 people with CHB participated (mean=49 years, SD=12). Participants identified as White (n=7/14), Asian (n=3/14), Hispanic, Black/African American (both n=1/14), or mixed ethnicity (n=2/14). Of the 14 participants, 12 self-reported feelings of fatigue, and 10 self-reported feelings of depression (note: many participants experienced both). Fatigue ranged from mild (n=5/12) to moderate (n=6/12) and severe (n=1/12). Depression ranged from mild (n=5/10) to moderate (n=4/10) and severe (n=1/10).

For depression, a lack of motivation/effort, loss of joy/pleasure, low mood, sadness, hopelessness, tiredness, and cognitive/mental difficulties were the most commonly reported experiences. The four domains most impacted by depression were daily activities (e.g., chores/errands), social participation, relationships, and work. For fatigue, participants frequently reported low physical energy, physical tiredness and weakness. Cognitive limitations such as an inability to think clearly or concentrate, a lack of motivation or a general sense of mental fatigue were also experienced. Similar to depression, participants often felt that their daily activities were impacted by their fatigue. Many also felt that fatigue impacted the quality and duration of their sleep, causing increased napping and reduced feelings of restfulness. Fatigue frequently had an emotional impact on participants, including feelings of frustration/anger, low mood, and hopelessness. Fatigue and depression did not appear to be distinct experiences for some participants.

CONCLUSIONS: People with CHB have multifaceted experiences of fatigue and depression that impact diverse aspects of life. It is important to measure these experiences in clinical research.