Qualitative analysis revealed three overarching themes 1) informational needs associated with prevention and transmission of HBV and laboratory and test interpretation; 2) health-specific challenges associated with diagnosis and treatment and 3) emotional impact related to experiences with HBV stigma, discrimination, and the fear, social isolation and distress after diagnosis from a sample of queries from individuals living with HBV. It is important to emphasize the overlap in relationships of specific themes found within the data (Fig. 3). For example, when individuals asked for laboratory interpretation, they often asked questions related to life expectancy after diagnosis, defended their lifestyle in an effort to de-stigmatize their diagnosis, or requested curative therapy or treatment for their diagnosis. An example of this overlap, “I really need your help because I learned I am hepatitis B virus carrier, and I don’t know what to do…I think I might die very soon because I am already dying slowing now one to talk or where to seek help. I really want to get more information and get sensitized about hepatitis B virus and how I can manage it properly or get total cure.” Within this quote there is an intersection between a recent diagnosis of HBV, the desire for more information and support, fear for the future, and treatment needs. The initial reaction from an HBV diagnosis has been shown in previous literature to involve significant stress and anxiety about the future and highlight worry and concern related to premature death.15,16,17,18,19,20
Health-related quality of life is a multi-dimensional concept related to physical, mental, emotional, and social functioning.21 Our analysis supports the claim that HBV impacts health-related quality of life and often negatively affects emotional health. For those with HBV, without symptoms, the possibility of progression to liver cancer and the lifelong nature of infection lead to the perception of having severe disease regardless of disease state.22,23 Previous studies have linked the infectious nature of HBV, inadequate knowledge about transmission modes, and anxiety about transmissibility of the virus to social isolation for those infected.23 This isolation as well as stigma, and discrimination might be reasons for the evident psychological burden associated with HBV.23 Our study describes the most commonly asked questions for individuals living with HBV determine gaps in knowledge and demonstrate the demand for the equitable distribution of accurate information about the infection particularly shortly after diagnosis. Additionally, we demonstrate the need for additional resources devoted to addressing HBV indicators of health-related quality of life and its psychological burden in vulnerable communities worldwide.
A common concern for individuals was the fear of transmission and desire to prevent HBV from infecting their loved ones, which has similarly been reported within the literature.10 The common misconception that HBV can be spread casually (through hugging, kissing, sharing food) emerged from queries and is consistent with other findings assessing general knowledge associated with HBV our research supports this.24,25 Additionally, like others, our findings also suggest that people living with HBV frequently report worry and fear of passing the virus to their close contacts and family members, as we have demonstrated within this analysis.10,16,15,20,26,27 This fear leads to self-stigmatization and self-isolation, which is seen both in the emotional and physical impact of living with HBV.10 Literature demonstrates those with HBV have significant anxiety and depression which is further supported within the queries.23
Feelings and experiences with HBV-related stigma were extremely prevalent in this study. Many individuals living with HBV commonly felt shame and embarrassment related to their diagnosis. Previous research has identified stigma and HBV as negatively associated with help-seeking, screening, disclosure, prevention of transmission, and adherence to treatment for HBV.10,28 Additionally, research shows that HBV-associated stigma had potentially negative impacts on mental health, wellbeing, employment, and relationships and is a major barrier to addressing HBV.28,29 Queries from this study provide evidence to support this as well as wide-spread discrimination people with HBV experience when seeking education, employment, and residency in various countries which directly affects their careers, ability to immigrate, and their subsequent quality of life. It will be important moving forward to systematically define and document HBV- related discrimination, as it relates to employment, education, and immigration/residency, so that it can be understood and addressed. Governments should ensure that legal protections are in place to protect people living with HBV from discrimination.
Data revealed common misconceptions around HBV, including myths that the HBV vaccine can cure someone who is already infected, that people always need treatment immediately after diagnosis, and that there is currently a cure for HBV. This discrepancy is likely due to poor or incomplete knowledge related to HBV, treatment mechanisms, and prevention which is consistent with the literature.16 Queries revealed the desperation and “hopelessness” of recently diagnosed individuals and their desire for a cure to completely remove HBV from their body.. Individuals also commonly held the belief that HBV was a “death sentence” and the emotional toll after diagnosis can create significant challenges mentally and physically which has also been shown in literature.10 In large multi-national studies of patient reported HBV outcomes, poorer health-related quality of life was related to advanced liver disease. The common theme of anxiety is described as advanced liver disease and physical symptoms manifest for those with HBV.,30,27,31 Having access to appropriate medical care and treatment could help to alleviate some of the fear and anxiety as well as access to accurate disease-related information to address common misconceptions that exacerbate fear and anxiety.
Data demonstrate that persons with HBV experience substantial barriers related to accessibility and cost of treatment as well as the burden of HBV management. HBV management requires regular monitoring by a knowledgeable provider, but for many low- to middle-income countries, finding a doctor competent on HBV management and being able to afford regular care and medication is a significant challenge. In low income countries a health disparity associated with HBV is related to access to and cost of treatment.10,16,29 HBV treatment has to be taken long-term, with the cost varying significantly across the world creating challenges in lifelong management of the disease.7 Additionally, as new therapies currently in development move through clinical trial, it is important that accessibility be considered a top priority particularly within low-income countries where HBV is endemic.
A concerning finding from these data was the widespread confusion about interpretation of lab tests. Many individuals indicated that their providers did not explain their test results, did not answer all of their questions due to time constraints, and did not demonstrate adequate knowledge on HBV. This has also been seen in previous research.33 Future resources should focus on expanding provider training around the globe, particularly in low income countries.34 Guidelines should also be simplified so medical management of HBV is easy to understand at the primary care level and applicable in countries with limited resources. Additionally, psychological health improvement programs in medical centers to improve a patient’s self-efficacy and confidence can help individuals cope at the time of their diagnosis.19 Provider consultation should also highlight disease progression for those with HBV to address misconceptions and expectations for management.35