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
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