Global hepatitis B and D community advisory board: expectations, challenges, and lessons learned.

Introduction: Community Advisory Boards (CABs) play an important role in developing and delivering patient-centered care. However, the impact of participation on CAB members has not been well studied, particularly on the global scale. In 2022, the Hepatitis B Foundation (HBF) convened the first global hepatitis B and hepatitis delta CAB with 23 members from 17 countries, representing six out of the seven World Health Organization (WHO) regions, and countries with the largest hepatitis B and hepatitis delta disease burden. Methods: To reflect on the process of assembling an effective and motivated CAB and assess the impact on CAB participants, three virtual focus group sessions were held with 16 participants in July and August 2023. Sessions were recorded and transcribed. Questions focused on motivations for joining the CAB, membership experiences, and lessons learned. Grounded theory analysis was used to generate hypotheses about reasons for CAB members' participation, as well as challenges and suggestions. Qualitative analysis using inductive reasoning identified key themes within responses. Transcripts were independently analyzed by a primary and secondary coder. Results: Motivations for joining the CAB included participants' desire to advocate for people living with hepatitis B and hepatitis delta, and other altruistic factors. Participants reflected that through CAB membership, they gained networking and advocacy opportunities and enhanced their hepatitis B- and hepatitis delta-related knowledge. Challenges participants experienced were related to time, physical limitations, and stigma. Finally, participants discussed their limited direct engagement with drug developers and proposed ways the CAB can increase interactions with stakeholders going forward. Discussion: Based on participants' assessments, establishing a global CAB for stigmatized infectious diseases is worth the effort. Regular internal review of community advisory boards' structure and performance is critical to ensure the CAB is fulfilling its mission.

Perspectives of People Living With Chronic Hepatitis D: Impact of Disease and Unmet Needs Along the Care Cascade.

Hepatitis D virus leads to a severe form of viral hepatitis and affects nearly 5% of people living with chronic hepatitis B. Chronic infection with hepatitis D virus leads to more rapid progression to cirrhosis, hepatocellular carcinoma and ultimately liver disease-related death compared with hepatitis B monoinfection. Health outcomes and treatment adherence can be affected by patient perception of, engagement in, and satisfaction with care. Our objective was to better understand the experiences of people with chronic hepatitis D, identify their preferred sources of information, and recognise unmet needs from their perspectives. Sixty-seven participants from the United States and the European Union took part in monthly, online, self-guided surveys for a minimum of 3 months with an optional extension. Participants reported feeling anxious and scared at the time of diagnosis but over time came to accept living with chronic hepatitis D. They voiced a need for access to information from trusted sources, fewer barriers to care, and shorter wait times for provider visits and test results after diagnosis. Participants experienced both physical and psychological strain living with chronic hepatitis D. Although most participants reported the ability to continue their regular activities and employment, some stated such activities were done at a reduced pace. Self-reported overall health appeared to be closely linked with emotional support. Understanding patient perspectives, with concurrent clinician perspectives, is crucial when working toward developing solutions to fulfil unmet patient needs associated with chronic hepatitis D management and advancing health equity.

The role of culturally appropriate interpersonal communication strategies to reduce hepatitis B and liver cancer disparities.

Introduction: Asian and Pacific Islander (API), African, and Caribbean immigrant groups in the U.S. are disproportionately impacted by chronic hepatitis B and hepatocellular carcinoma (primary liver cancer). Creating educational communication campaigns about hepatitis B and liver cancer for these communities is necessary to increase disease-related awareness and prompt health-promoting behaviors. Identifying interpersonal communication (IPC) preferences within diverse communities for integration into an educational campaign that emphasizes the link between hepatitis B and liver cancer can ultimately promote uptake of screening, vaccination and linkage to appropriate care. Methods: Fifteen focus groups and two key informant interviews were conducted with participants from Micronesian, Chinese, Hmong, Nigerian, Ghanaian, Vietnamese, Korean, Somali, Ethiopian, Filipino, Haitian, and Francophone West African communities. Data were analyzed using thematic coding and analysis. Results: Findings demonstrate that all communities preferred that materials be offered in both English and native languages and emphasized that campaigns highlight the connection between hepatitis B and liver cancer. Educational sessions should take place in settings where communities feel safe, including community-based organizations, religious establishments, and healthcare offices, and should be facilitated by trusted messengers, including patient navigators, doctors and faith leaders. Presenting accurate information and dispelling myths and misconceptions around hepatitis B, liver cancer, and their connection were the biggest needs identified across all focus groups. Discussion: This study provides insight into community-specific preferences for learning about hepatitis B and liver cancer through IPC methods. The findings from this study can be used to design multi-platform, culturally and linguistically appropriate health education campaigns to facilitate improved diagnosis, prevention, and management of hepatitis B and liver cancer among heavily impacted communities in the U.S.

Existing knowledge, myths, and perceptions about hepatitis B and liver cancer within highly impacted immigrant communities.

Background: Immigrant groups from Southeast Asia, the Pacific Islands, sub-Saharan Africa, and the Caribbean bear the heaviest burden of chronic hepatitis B and primary liver cancer in the United States. Educational campaigns to increase knowledge about these diseases and their connection are necessary to promote protective health behaviors within these communities, to ultimately reduce the burden of disease, lessen stigma, and eliminate health disparities. Objectives: This project sought to engage groups within highly impacted communities to identify existing gaps in hepatitis B- and liver cancer-related knowledge, in order to inform future health education programming that will aim to reduce stigma and promote liver cancer prevention and early detection behaviors within and across groups. Methods: Fifteen focus groups and two key informant interviews were conducted virtually with participants from Micronesian, Chinese, Hmong, Nigerian, Ghanaian, Vietnamese, Korean, Somali, Ethiopian, Filipino, Haitian, and Francophone West African communities. Qualitative data were analyzed using thematic coding. Results: There are large gaps in knowledge and awareness of hepatitis B and liver cancer, and the link between these two diseases among Asian, Pacific Islander, African and Haitian immigrant communities. This limited knowledge and misinformation, exacerbated by stigma, hinder these groups' utilization of hepatitis B and liver cancer diagnostic and preventative healthcare services. Conclusion: To reduce hepatitis B and liver cancer health disparities within heavily burdened groups, health education needs to be community-informed, culturally sensitive, and actionable. Study results can guide the development of culturally and linguistically appropriate education programs that focus on the link between hepatitis B and liver cancer and the need for vaccination and routine screening, and that are responsive to the knowledge gaps and misperceptions of diverse communities. The results also provide valuable insights for healthcare providers to improve the knowledge gaps of the diverse patient populations that they serve.

The Role of Culturally Appropriate Mediated Communication Strategies to Reduce Hepatitis B and Liver Cancer Disparities.

Asian, Pacific Islander, African, and Caribbean communities in the U.S. are heavily impacted by chronic hepatitis B (HBV) and hepatocellular carcinoma (HCC). Educating these groups about the link between the two diseases is imperative to improve screening rates and health outcomes. This study aims to identify and incorporate preferred mediated communication methods into community-specific educational campaigns which emphasize the connection between the conditions, to promote uptake of prevention and management behaviors for HBV and HCC. Fifteen focus groups and two key informant interviews were conducted with Micronesian, Chinese, Hmong, Nigerian, Ghanaian, Vietnamese, Korean, Somali, Ethiopian, Filipino, Haitian, and Francophone West African communities. Data were analyzed using thematic coding and analysis. Findings demonstrate that all communities preferred materials be offered in both English and native languages and requested that materials highlight the connection between HBV and HCC. Delivery channel preferences and messaging themes varied by group. This study provides insight into community-specific preferences for learning about HBV and HCC. The findings can be used to design culturally and linguistically tailored, multi-platform, health education campaigns to facilitate improved HBV screening and vaccination rates and increase knowledge about HCC risk among highly impacted communities in the U.S.

Barriers to accessing hepatitis B medication: a qualitative study from the USA and Canada.

OBJECTIVES: To collect and document the numerous barriers that people living with hepatitis B (PLHB) encounter when trying to access their hepatitis B virus (HBV) medications. DESIGN: Researchers collected qualitative data through 24 online interviews. The semistructured interview questions focused on the impact that HBV has on different aspects of daily life (physical, emotional and social), personal experiences managing their infection, HBV treatment experiences and interactions with healthcare providers. SETTING: All interviews occurred over Zoom. PARTICIPANTS: The participant cohort consisted of 12 males and 12 females. 63% of all participants represented communities of colour (37% white, 17% black/African/African American and 46% Asian/Asian American). Most of the participants were on antiviral treatment at the time of the study (62%). Participants were PLHB (self-reported), ≥18 years old, living in the USA or Canada and spoke English. RESULTS: Participants reported several barriers to accessing medicine among PLHB including financial barriers, health insurance and pharmacy preauthorisation process and other intangible barriers like lack of access to reliable patient-friendly information and stigma. The identified barriers to accessing HBV medication impacted patients' continuity of care. CONCLUSIONS: Access to medicine is essential to improving health outcomes. PLHB experience significant barriers to accessing HBV antivirals at different levels. Patient-related, physician-related and healthcare system barriers were identified as themes contributing to antiviral access challenges. More research is needed to identify strategies to improve access to HBV medications.

An updated assessment of hepatitis delta prevalence among adults in Canada: A meta-analysis.

Foreign-born (FB) persons represent a large proportion of adults with chronic hepatitis B (CHB) in Canada due to higher prevalence rates in countries of birth for FB persons. Suboptimal awareness and low rates of hepatitis delta virus (HDV) testing contribute to underdiagnosis and gaps in accurate estimates of Canada HDV prevalence. We aim to provide an assessment of CHB and HDV prevalence in Canada using a comprehensive literature review and meta-analysis. A comprehensive literature review of articles reporting HBsAg seroprevalence and anti-HDV prevalence was conducted to calculate country-specific rates and pooled prevalence of CHB and HDV using meta-analyses. Country-specific CHB and HDV rate estimates were combined with number of FB persons in Canada in 2021 from Statistics Canada to estimate total numbers of FB with CHB and HDV, respectively. These estimates were combined with estimates of Canada-born persons with CHB and HDV to yield the total number of persons with CHB and HDV. In 2021, we estimated 0.550 million (M) (95% CI 0.488-0.615) persons with CHB; 0.344 M (95% CI 0.288-0.401) were FB and 0.206 M (95% CI: 0.200-0.214) were Canada-born. The weighted average HDV prevalence among FB persons in Canada was 5.19% (17,848 [95% CI 9611-26,052] persons), among whom 50% emigrated from Asia and 31% from Africa. When combined with estimates of Canada-born persons with HDV, we estimate 35,059 (95% CI: 18,744-52,083) persons with HDV in Canada. In conclusion, we estimate 0.550 M and 35,059 persons living with CHB and HDV, respectively, in Canada in 2021.

Dismantling Barriers to Hepatitis B and Delta Screening, Prevention, and Linkage to Care among the PWUD Community in Philadelphia.

The prevalence of hepatitis B and delta viruses (HBV/HDV) among people who use drugs (PWUD) remains largely unknown. In the context of one Philadelphia-based harm reduction organization (HRO), this study aimed to assess HBV/HDV prevalence and facilitate linkage to care. Participants completed a demographic HBV/HDV risk factor survey and were screened for HBV and reflexively for HDV if positive for HBV surface antigen or isolated core antibody. Fisher's exact tests and regression were used to understand relationships between risks and HBV blood markers. Of the 498 participants, 126 (25.3%) did not have hepatitis B immunity, 52.6% had been vaccinated against HBV, and 17.9% had recovered from a past infection. Eleven (2.2%) participants tested positive for isolated HBV core antibody, 10 (2.0%) for HBV surface antigen, and one (0.2%) for HDV antibody. History of incarceration was associated with current HBV infection, while transactional sex and experience of homelessness were predictive of previous exposure. This study found high rates of current and past HBV infection, and a 10% HBV/HDV co-infection rate. Despite availability of vaccine, one quarter of participants remained vulnerable to infection. Findings demonstrate the need to improve low-threshold HBV/HDV screening, vaccination, and linkage to care among PWUD. The study also identified gaps in the HBV/HDV care cascade, including lack of point-of-care diagnostics and lack of support for HROs to provide HBV services.

Estimating the prevalence of hepatitis delta virus infection among adults in the United States: A meta-analysis.

BACKGROUND AND AIMS: Suboptimal awareness and low rates of hepatitis delta virus (HDV) testing contribute to underdiagnosis and gaps in accurate estimates of U.S. HDV prevalence. We aim to provide an updated assessment of HDV prevalence in the U.S. using a comprehensive literature review and meta-analysis approach. METHODS: A comprehensive literature review of articles reporting HBsAg seroprevalence and anti-HDV prevalence was conducted to calculate country-specific rates and pooled prevalence of CHB and HDV using meta-analyses. Country-specific CHB and HDV rate estimates were combined with number of foreign-born (FB) persons in the U.S. in 2022 from U.S. Census Bureau to estimate total numbers of FB with CHB and HDV, respectively. These estimates were further combined with updated estimates of U.S.-born persons with CHB and HDV to yield the total number of persons with CHB and HDV. RESULTS: In 2022, we estimated 1.971 million (M) (95% CI 1.547-2.508) persons with CHB; 1.547 M (95% CI 1.264-1.831) were FB and 0.424 M (95% CI: 0.282-0.678) were U.S.-born. The weighted average HDV prevalence among FB persons in the U.S. was 4.20% (64 938 [95% CI 33055-97 392] persons), among whom 45% emigrated from Asia, 25% from Africa, and 14% from Europe. When combined with updated estimates of U.S.-born persons with HDV, we estimate 75 005 (95% CI: 42187-108 393) persons with HDV in the U.S. CONCLUSIONS: Including both FB and U.S.-born persons, we estimated that 1.971 M and 75 005 persons were living with CHB and HDV, respectively, in the U.S. in 2022.

Quality of life of people living with chronic hepatitis B: The role of social support system.

People living with chronic hepatitis B (PLCHB) are recommended to follow a lifelong monitoring regimen and face increased risk of liver cancer. Additionally, PLCHB frequently encounter stigma and discrimination, and relationship disruptions because of their chronic hepatitis B (CHB). Social support plays a key role in coping with chronic illnesses; however, this is inadequately assessed for PLCHB. This study aims to assess the physical, social, and mental impacts of living with CHB, the strategies PLCHB utilize to cope with their disease, and how social support-or lack of-impacts their journey with hepatitis B. The study was promoted through the Hepatitis B Foundation social media platforms, interested individuals filled-in a form expressing their interest to participate. The researcher conducted 24 telephone interviews in English, with PLCHB ≥18 years of age residing in the United States (U.S.) and Canada. Questions focused on the lived experiences of CHB and explored social support mechanisms that helped PLCHB. PLCHB experience a wide range of impacts (physical, social, and mental) that negatively affect their quality of life. Participants reported that receiving social support from their close network of individuals, hepatitis B community, or healthcare providers positively influenced their perspective on their future health and helped them adhere to treatment. The physical, social, and mental impacts of living with hepatitis B significantly affect the quality of life of PLCHB, calling for more research to document these impacts, and design integrated care models to address them. Social support appears to play an essential role in helping PLCHB cope with their disease and should be further studied.

Advancing research, awareness, screening, and linkage to care to eliminate HDV in the U.S.

HDV, which coinfects individuals living with HBV, is the most aggressive form of viral hepatitis. Compared with hepatitis B monoinfection, hepatitis delta is associated with more rapid progression to cirrhosis and an increased risk of liver cancer and death. Despite being a major contributor to hepatitis B-associated liver disease, hepatitis delta remains largely unknown to the general public, health care providers, and at-risk communities. Given the widespread lack of awareness and underdiagnosis of hepatitis delta in the US, the American Liver Foundation (ALF) and the Hepatitis B Foundation (HBF) convened a virtual Hepatitis Delta Roundtable Meeting on April 21 and 22, 2022. The Roundtable Panel included persons living with hepatitis delta, caregivers, liver disease specialists, primary care providers, state and federal public health professionals, and community-based organizations. The Panel identified several major challenges surrounding hepatitis delta, including a lack of awareness of hepatitis delta among the public and health care providers; complex risk-based testing protocols; a lack of accurate prevalence data; limited data on linkage to care; and inadequate communications among stakeholders. Potential strategies to address these challenges include improving and expanding education for different audiences; advocating for simplified protocols for hepatitis B screening with hepatitis delta reflex testing; expanding surveillance for hepatitis delta; requiring automated reporting and national notification; improving data sharing for research; and enhancing communications around hepatitis delta. The recent CDC recommendations for universal adult screening and vaccination against hepatitis B and the anticipated availability of new therapies for hepatitis delta present a unique opportunity to focus attention on this dangerous virus. The Roundtable Panel calls for urgent action to make significant progress in addressing hepatitis delta among individuals living with hepatitis B.