Significant stigma and barriers to care are a reality for people living with hbv infection in the united kingdom - results of a mixed methods study

Introduction

Hepatitis B Virus (HBV) infection is a major global health concern, leading the World Health Organization to set targets to eliminate HBV as a public health threat by 2030. Very few countries are on target to meet elimination targets, and a UKHSA report published in 2023 highlights areas in which the UK needs to accelerate progress. One of the issues hampering elimination efforts is the disjointed and complex care pathway for HBV. The aim of this study was to better define the barriers for HBV care from both the perspective of health care professionals (HCP) and more importantly people living with HBV through a mixed methods approach.

Methods

An online survey of HCPs was carried out using an email invite to all members of the British Viral Hepatitis Group. The answers to six questions asked were categorised using the Leikert Scale. The lived personal experiences and perceptions were ascertained through an on-line focus group organised by the British Liver Trust. Open questions were used to ascertain these with key opinions clustered into themes.

Results

67 HCP surveys were returned (data in table 1). Only 38 participants returned information on their profession, of whom 2/3 were either hepatologists or clinical nurse specialists. Almost 70% of respondents agreed or strongly agreed that HBV diagnosis should be decentralised from secondary care, but there was lack of consensus as to where ongoing clinical provision is best provided. HCPs recognise stigma as a barrier to care and advocate for more research in this space. Findings from the focus groups highlighted the stigma faced by many people living with HBV, with many keeping the diagnosis hidden even from close friends and family. Furthermore, there was a clear desire for better educational resources for them, their family and friends but also for HCPs. Electronic solutions were strongly favoured by participants responding on-line and in our focus group.

Conclusions

Our data suggest many barriers to effective delivery of care exist for people living with HBV in the UK, including significant stigma. Electronic solutions represent a potential avenue for providing linkage to care, peer support and educational resources, and require further exploration. These findings will be used to inform further applications to the National Institute for Health and Research for funding in 2024, and may be relevant to future service changes to enhance and optimise HBV management. These changes need to be carefully evaluated, however, to ensure current inequalities of access are not exacerbated.