Behind the Paper: Survey of lived experiences and challenges in hepatitis B management and treatment
Published in Microbiology, General & Internal Medicine, and Public Health
Over 250 million people are living with hepatitis B worldwide and approximately 20 to 30 percent of those infected will develop life-threatening complications, including cirrhosis and liver cancer. Globally, the majority of individuals remain undiagnosed, and out of care. Individuals who are aware of their infection, particularly within low and middle income countries, face significant health disparities (including costs for testing, management and treatment, access to a knowledgeable health care provider, stigma and discrimination) that limit the ability to following to the standard guideline recommendations for treatment and management.
What inspired this study?
To gain a better understanding of the values and preferences from people with hepatitis B regarding their care, our team conducted a survey to better understand diagnostics, treatment and management preferences and barriers to accessing care for hepatitis B. This study reports on survey findings and provides insight into the current lived experiences of people with hepatitis B and suggestions for improving care service delivery and management. The survey results can be used to inform key updates and considerations to hepatitis B clinical management and treatment recommendations within future hepatitis B guideline development.
Why is it important?
Despite significant mortality, only approximately 10% of people with hepatitis B are diagnosed and therefore there is a major diagnostic and care gap for those with hepatitis B worldwide. Disparities and limited clinical management including treatment, particularly in low and middle-income countries (LMIC), is a significant challenge for those diagnosed with hepatitis B. There is limited literature about patient values and preferences related to testing, management and treatment of hepatitis B. Our intent is to fill that gap and call attention to the need for more research in this space.
What makes this study unique?
This study was unique in that it was a global survey examining lived experiences and treatment preferences for those with hepatitis B. It is one of the first that examines treatment values and preferences.
Did this study show anything unexpected?
Almost all individuals responding to the survey expressed the desire to be involved in care and treatment decisions around their hepatitis B management. This encourages the need for more shared decision-making models of care delivery including peer support for people with hepatitis B and strengthened relationships between providers and their patients. Additionally, having a knowledgeable health care worker and one that could empathize with those with hepatitis B was a challenge for many, particularly those in low- and middle-income countries. This emphasizes the low knowledge and awareness among health care providers and the need for enhanced hepatitis B specific training of providers. Access to affordable testing and treatment was a major barrier of care for people with hepatitis B due to the high out-of-pocket expenses required for hepatitis B management.
What is the wider significance of the study findings?
Takeaways from this study involve addressing access to management and care challenges reported within this survey so guidelines and recommendations can be applicable to those directly impacted by hepatitis B. Another significant finding is the need for expansion of health care worker training to ensure accurate and appropriate management for hepatitis B occurs within health care settings. The third major point is that shared decision making is a key aspect of care delivery and should be integrated within hepatitis B service delivery. And finally, survey findings demonstrate the social and psychological consequences associated with a hepatitis B diagnosis like stigma and discrimination. The stigma and discrimination associated with hepatitis B have also been linked to poor knowledge of hepatitis B among both providers and the general public and misconceptions around hepatitis B transmission. Education surrounding hepatitis B among both the general population and providers is essential to reduce these negative consequences of hepatitis B that impact those diagnosed.
Peer support: Downs LO, Kabagambe K, Williams S, et al. Peer support for people living with hepatitis B virus—A foundation for treatment expansion. J Viral Hepat. 2024; 00: 1-10. doi:10.1111/jvh.13952
Freeland, C., Qureshi, A., Wallace, J. et al. Hepatitis B discrimination: global responses requiring global data. BMC Public Health 24, 1575 (2024). https://doi.org/10.1186/s12889-024-18918-8
Freeland, C., Mendola, L., Cheng, V. et al. The unvirtuous cycle of discrimination affecting people with hepatitis B: a multi-country qualitative assessment of key-informant perspectives. Int J Equity Health 21, 77 (2022). https://doi.org/10.1186/s12939-022-01677-6
Follow the Topic
-
BMC Public Health
An open access, peer-reviewed journal that considers articles on the epidemiology of disease and the understanding of all aspects of public health.
Related Collections
With Collections, you can get published faster and increase your visibility.
Endocrine disruption as a public health issue
BMC Public Health invites submissions to our new Collection, Endocrine disruption as a public health issue. Endocrine disruption has emerged as a growing public health challenge, characterized by the interference of certain chemicals with the normal functioning of the endocrine system. Endocrine disrupting chemicals (EDCs) can mimic, block, or alter hormone signaling, leading to a range of adverse health outcomes. Common sources of EDC exposure include everyday products such as plastics, pesticides, and personal care items, all of which can release substances like bisphenols and phthalates into the environment and human body. Understanding the links between exposure to EDCs and eventual health outcomes is vital for assessing their implications for population health.
We welcome submissions that delve into various aspects of endocrine disruption. Key topics of interest include, but are not limited to:
Role of EDCs in metabolic, endocrine and immune-related disorders
Effect of EDCs in consumer products including personal care products
The links between EDC exposure and male and female reproductive health problems
The links between EDC exposure and certain cancers
Insights into the long-term consequences of early-life EDC exposure and transgenerational effects
Methodological advances in assessing the health impacts of EDC mixtures and cumulative exposures
Development and application of statistical approaches to better estimate the health effects of chronic and/or concurrent exposure
Validating models of cumulative exposure with measurement of combinations of EDCs in human tissues
Individual- and policy-level interventions to address health impacts of EDC exposures
The search for substitutes lacking endocrine disrupting properties
All manuscripts submitted to this journal, including those submitted to collections and special issues, are assessed in line with our editorial policies and the journal’s peer review process. Reviewers and editors are required to declare competing interests and can be excluded from the peer review process if a competing interest exists.
Publishing Model: Open Access
Deadline: May 26, 2026
Appropriate use of antibiotics: public health strategies, knowledge, and practice gaps
BMC Public Health is calling for submissions to our Collection on Appropriate use of antibiotics: public health strategies, knowledge, and practice gaps.
Misuse of antibiotics contributes to antimicrobial resistance (AMR), posing a threat to the future management of bacterial diseases. However, it is a multi-faceted problem without a simple solution.
Antibiotic misuse can take various forms, each requiring different strategies to address. In healthcare systems, antibiotic overuse is often driven by the tension between clinical uncertainty and the desire to offer patients a treatment that may improve their symptoms or prevent them from developing complications. The prescription of antibiotics is often done empirically, driven by the difficulty of distinguishing between bacterial and viral infections at the point of care, or the worry that a lack of intervention could have consequences.
Added to this, people in the community can contribute to inappropriate use by reusing or sharing leftover antibiotics from prior prescriptions. Similarly, misplaced expectations around the benefits of antibiotics can drive misuse in the community, pointing to the need for community-focused and community-led initiatives to inform the public on the use of antibiotics and the collective impact of antimicrobial resistance.
However, social science reframes antibiotic overuse as more than an individual behaviour problem. Antibiotics frequently act as a social and structural “quick fix” that supports care, productivity, hygiene, and coping with inequality in everyday life. They are used to compensate for gaps in water, sanitation, social protection, and health-system capacity, suggesting that interventions focusing narrowly on individual knowledge and attitudes may be unlikely to succeed unless they also address these wider drivers.
This Collection aims to explore the various dimensions of the responsible use of antibiotics, examining the prevalence of misuse and strategies for reducing unnecessary use, covering interventions aimed at prescribers and pharmacists as well as 'bottom-up' strategies such as community education campaigns. We invite contributions that investigate the roles of healthcare providers, patients, professional guidance, communities, and policymakers in addressing this pressing issue.
Potential topics for submission include, but are not limited to:
Patterns of antibiotics overuse in various populations
The role of healthcare providers in preventing misuse
Public health campaigns and gross-roots initiatives to promote responsible use of antibiotics
Policy frameworks for improving the prescribing and dispensing of antibiotics
Social and structural drivers of antibiotic use (ethnographic, anthropological, and political-economy analyses).
Interventions that address upstream determinants (water, sanitation, social protection, labour conditions) alongside stewardship measures.
This Collection supports and amplifies research related to SDG 3 (Good Health and Well-being).
All manuscripts submitted to this journal, including those submitted to collections and special issues, are assessed in line with our editorial policies and the journal’s peer review process. Reviewers and editors are required to declare competing interests and can be excluded from the peer review process if a competing interest exists.
Publishing Model: Open Access
Deadline: Jul 03, 2026
Please sign in or register for FREE
If you are a registered user on Research Communities by Springer Nature, please sign in
Great story and well-conducted study