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. 2024 Apr 2;24(1):944.
doi: 10.1186/s12889-024-18425-w.

Survey of lived experiences and challenges in hepatitis B management and treatment

Catherine Freeland  1 , Charles Adjei  2 , Jack Wallace  3   4 , Su Wang  5 , Jessica Hicks  6 , Danjuma Adda  6   7 , Cary James  6 , Chari Cohen  8
Affiliations

Survey of lived experiences and challenges in hepatitis B management and treatment

Catherine Freeland et al. BMC Public Health. .

Abstract

Almost 300 million people are living with chronic hepatitis B infection worldwide and most remain undiagnosed and at risk for liver cancer. In 2015 the World Health Organization (WHO) developed guidelines for the prevention, care, and treatment of persons with chronic hepatitis B and in early 2023 began to work on updating these guidelines. In March 2023, a self-administered, anonymous online survey was launched, aiming to identify patient preferences related to the clinical management of hepatitis B including current management, treatment, and care experiences, preferences regarding engagement with providers, and preferences related to simplifying hepatitis B care access. A sample of 560 individuals living with hepatitis B (self-identified as HBsAg positive) from 76 countries completed the survey. Key findings demonstrated that less than half (49%, N = 268) of participants regularly visited a doctor to check the health of their liver (every 6-12 months), with 37% of participants prescribed antiviral medication by a specialist (82%, N = 167) or general practitioner (13%, N = 26). Participants reported not being actively involved in care decision making with their providers (42%, N = 217), with an overwhelming majority wanting to participate in hepatitis B management and treatment choices (85%, N = 435). Participants provided qualitative and quantitative details using open-ended responses within the survey about challenges with medication affordability and receiving care from a knowledgeable provider. Overall findings demonstrated key gaps in care, management, and treatment access related to hepatitis B: identifying these gaps can be used to identify areas for improvement along the care continuum for viral hepatitis. The survey found a need for the comprehensive simplification of clinical management and health care services related to hepatitis B. A thematic analysis of the open-ended survey responses highlighted major overarching themes including the cost and access burdens associated with hepatitis B management and treatment, and challenges in finding knowledgeable providers. Results from this mixed methods survey were used to inform the WHO hepatitis B guidelines update. Efforts should continue to explore public health approaches to address barriers and facilitators to testing, care, and treatment for people with hepatitis B to improve awareness of hepatitis B and access, care, and treatment among patients and providers.

Keywords: Hepatitis B; Patient outcomes; Treatment preferences; Viral hepatitis.

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Conflict of interest statement

Chari Cohen: Hepatitis B Foundation receives educational, programmatic and research grants from Gilead Sciences, GSK and VBI Vaccines. C Cohen serves on a patient/advocate advisory council Gilead Sciences, GSK and Roche (as a representative of the Hepatitis B Foundation). Catherine Freeland has served on the patient advisory boards for Gilead Sciences and GSK. Other authors have no competing interests.

Figures

Fig. 1
Fig. 1
Country of origin as reported from survey participants self-identified as living with hepatitis B (HBsAg positive, N = 554)
Fig. 2
Fig. 2
WHO regional differences in access to care based on the WHO hepatitis B management guidelines
Fig. 3
Fig. 3
Access to hepatitis B treatment based on WHO region
See this image and copyright information in PMC

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