The Silent Burden of Hepatitis B-Related Stigma

Individuals experiencing stigma related to chronic hepatitis B virus (HBV) infection often experience negative self-beliefs, isolation, discrimination, and reduced willingness to engage with healthcare professionals. We aimed to understand the patient perspective of HBV-related stigma and to summarize the patient experience of stigma in a patient-centric conceptual model. Eligible adult participants with a confirmed diagnosis of chronic HBV infection were recruited from the US, China, and Poland. Qualitative, semi-structured, concept elicitation interviews of approximately 60 min were conducted to explore participants' experiences of stigma. Qualitative analysis of interview data was conducted using Thematic Analysis methods with concepts categorized into domains and pre-determined stigma types. A total of 28 participants were recruited from the US (n = 11), China (n = 11), and Poland (n = 6). Internalized stigma was reported by all participants (n = 28; 100%), social stigma was reported by 79% (n = 22) of participants, and institutional stigma was reported by 57% (n = 16) of participants. Seven domains across condition-specific and health-related quality of life (HRQoL) concepts were identified to create a patient-centric conceptual model of the experience of stigma associated with HBV infection. Each domain was reported by at least half of the participants, with social functioning (n = 28; 100%), emotional wellbeing (n = 27; 96%), and HBV transmission (n = 27; 96%) most frequently reported. Experiences of stigma were highly inter-related. Experiences of HBV-related stigma were highly pervasive, with widespread impact on HRQoL. To address the burden of stigma, reducing internalized stigma would be most impactful as this was the most common and bothersome.