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

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.

Perceived Benefits and Barriers to Implementing Occupational Health Recommendations Among Immigrant-Owned Nail Salons in the Greater Philadelphia Region.

Introduction. Immigrant nail salon owners and employees face multiple barriers to accessing occupational health training and services. We formed an academic-community-based organization-business owner partnership-unique in that all partners were culturally congruent-to develop a pilot intervention program for the nail salon community. Methods. Eighteen individuals (nine salon owners and nine employees) from the Greater Philadelphia region received the training in their native language and provided feedback through in-depth qualitative interviews. Interview guide was developed using the Consolidated Framework for Implementation Research (CFIR). Themes of perceived benefits and barriers were identified and aligned with relevant CFIR constructs to gain better understanding of the implementation challenges. Results. Reported benefits of program were improved knowledge of the workplace hazards and safety practices, and the potential to attract more customers and retain employees. Perceived barriers to implementing recommended practices were limited availability of safer products and high cost, challenges communicating with customers, lack of engagement from some owners, organizational management practices affecting employees' motivation, and limited partnership with local government to assist small immigrant-owned businesses. Conclusions. Our study revealed multiple factors that pit long-term health protection of nail salon workers against the economic viability of the businesses that employ them. Our research highlights the need to (1) advocate for federal policies making safer products to be more accessible to the masses, (2) establish local policy and culturally appropriate technical support programs that engage community-based organizations, and (3) develop economic opportunities and mentorship for immigrant entrepreneurs to operate profitable healthy salons.

A Health Belief Model Examination of Factors Related to Hepatitis B Screening Among African Immigrants in Philadelphia.

Chronic hepatitis B infection is a leading cause of liver cancer worldwide. In the USA, African immigrants (AI) have high hepatitis B virus (HBV) infection rates but low HBV knowledge and screening rates. Research about HBV among AI living in Philadelphia is particularly limited. This study aims to assess barriers to and factors influencing HBV screening in the Philadelphia AI population. African and Caribbean-born adults in Greater Philadelphia were recruited for phone interviews at community health fairs hosted by the African Cultural Alliance of North America (ACANA) and the African Family Health Organization (AFAHO) in partnership with the Hepatitis B Foundation. Seventeen interviews were recorded, transcribed, and coded independently by two members of the research team using NVivo software. Themes and subthemes were created by analysis of the codes and arranged under Health Belief Model (HBM) concepts. Major perceived barriers included lack of HBV knowledge and awareness and cultural challenges related to health care access, preventive care, fear, and stigma. Participants recommended using community organizations and programs to spread awareness about HBV and serve as cues to action. In-person education was emphasized due to lack of access to and knowledge of technology such as Zoom. While HBV educational sessions have been implemented in this population, they have not been consistent or far-reaching. The results of this study can contribute to the implementation of a comprehensive AI-specific HBV education and screening program through partnerships with community organizations to ensure that all high-risk individuals in the Philadelphia area are screened.

Barriers and facilitators to hepatitis B birth dose vaccination: Perspectives from healthcare providers and pregnant women accessing antenatal care in Nigeria.

Nigeria is estimated to have the largest number of children worldwide, living with chronic hepatitis B virus (HBV) infection, the leading cause of liver cancer. Up to 90% of children infected at birth develop chronic HBV infection. A birth dose of the hepatitis B vaccine (HepB-BD) followed by at least two additional vaccine doses is recommended for prevention. This study assessed barriers and facilitators of HepB-BD administration and uptake, using structured interviews with healthcare providers and pregnant women in Adamawa and Enugu States, Nigeria. The Consolidated Framework for Implementation Sciences Research (CFIR) guided data collection and analysis. We interviewed 87 key informants (40 healthcare providers and 47 pregnant women) and created a codebook for data analysis. Codes were developed by reviewing the literature and reading a subsample of queries line-by-line. The overarching themes identified as barriers among healthcare providers were: the lack of hepatitis B knowledge, limited availability of HepB-BD to vaccination days only, misconceptions about HepB-BD vaccination, challenges in health facility staffing capacity, costs associated with vaccine transportation, and concerns related to vaccine wastage. Facilitators of timely HepB-BD vaccination included: vaccine availability, storage, and hospital births occurring during immunization days. Overarching themes identified as barriers among pregnant women were lack of hepatitis B knowledge, limited understanding of HepB-BD importance, and limited access to vaccines for births occurring outside of a health facility. Facilitators were high vaccine acceptance and willingness for their infants to receive HepB-BD if recommended by providers. Findings indicate the need for enhanced HepB-BD vaccination training for HCWs, educating pregnant women on HBV and the importance of timely HepB-BD, updating policies to enable HepB-BD administration within 24 hours of birth, expanding HepB-BD availability in public and private hospital maternity wards for all facility births, and outreach activities to reach home births.

The importance of triple panel testing for hepatitis B and the burden of isolated anti-hepatitis B core antibodies within a community sample.

Within the United States (US), 2.4 million individuals are living with chronic hepatitis B, but less than 20% are diagnosed. Isolated anti-hepatitis B core (iAHBc) antibodies indicate serology in an individual that is positive for anti-HBc antibodies, while negative for surface antigen (HBsAg) and surface antibodies (anti-HBs). A result of iAHBc could indicate a chronic occult bloodstream infection, necessitating further testing. This study assesses the prevalence and risk factors associated with anti-HBc and iAHBc within community high-risk screening in Greater Philadelphia. Participants (n = 177) were screened for HBsAg, anti-HBs, and anti-HBc during community screening events in 2022. Chi-square tables and Firth logistic regression were used to describe the data and to assess the odds of iAHBc. The findings indicate that there was an iAHBc prevalence of 7.3% (n = 13) within our study. The odds of anti-HBc were increased for immigrants from the Western Pacific (4.5%) and Africa (11.9%). Individuals born in Africa had 7.93 greater odds for iAHBc than those born in the Americas, and these odds are multiplied by 1.01 for every 1-year increase in age. Our data show a high burden of iAHBc within high-risk and often hard-to-reach communities. Triple panel screening should be incorporated into all HBV screening programs, in accordance with current Centers for Disease Control and Prevention (CDC) universal screening recommendations, to ensure a comprehensive picture of the disease burden and reduce the risk of missing people with occult hepatitis B and those at risk for viral reactivation or liver complications.

The unvirtuous cycle of discrimination affecting people with hepatitis B: a multi-country qualitative assessment of key-informant perspectives.

BACKGROUND: An estimated 296 million individuals live with chronic hepatitis B worldwide, most have not been diagnosed and remain at risk of liver disease and cancer. People with hepatitis B often face discrimination that denies them employment or education opportunities, results in unfair treatment at work or in school, limits their ability to emigrate to certain countries, and in some cases prohibits them from serving in the military. Discrimination specific to hepatitis B has not been widely documented within the literature. This study aims to investigate and describe hepatitis B related discrimination, document discrimination occurring around the globe, and provide initial recommendations for addressing discrimination using key informant interviews. METHODS: Purposive and snowball sampling were used to identify potential key informants for qualitative interview. Key informants identified as community health leaders, public health scientists, doctors, and researchers, many of whom were also living with hepatitis B. Using a semi-structured guide, participants were asked to describe their experience and any challenges for people living with hepatitis B including marginalization and its' consequences. A codebook was used to guide the organization of data for analysis, and all transcripts N = 17 were double coded. RESULTS: The overarching themes identified from interviews demonstrate explicit experiences with discrimination of those directly affected, the psychological responses, and the negative health outcomes associated with the unvirtuous cycle of discrimination. All key informants reported on the substantial quality of life implications and often poorer health outcomes resulting from hepatitis B discrimination. Participants also identified the significant impact of hepatitis B discrimination occurring within a range of education-based services across several countries as well as military exclusion or removal if individuals are found to have hepatitis B. CONCLUSION: Our data demonstrate that hepatitis B discrimination has a significant impact. Discrimination can occur at various points in life from education, to seeking employment, to marriage, to restrictions on entry, travel and stay in other countries. This study demonstrates the impact of discrimination and the need for future research that can lead to policy change and protections for people living with and impacted by hepatitis B.

Assessment of hepatitis B knowledge and awareness among the Sudanese population in Khartoum State.

Introduction: globally it is estimated that majority of the burden of hepatitis B virus infection is in sub-Saharan African countries (SSA). Africa is also hit by a dreadful complication of hepatocellular carcinoma and sequalae of end-stage liver disease. Despite this, the knowledge and awareness of the population to this silent killer is largely unknown. The aim of this study was to assess the knowledge and awareness of hepatitis B virus among the general population within Sudan to understand the misconceptions and provide a better direction toward the disease elimination goals. Methods: a community-based study was carried out in three locations in Khartoum state during a community hepatitis awareness campaign, where participants were provided education, screening, and vaccine. Data were collected after proper consent was obtained from the respective Institutional Review Board (IRB) office. Basic demographic characteristics, knowledge assessment questions, and awareness were used, which are derived from standard questionnaire. Finally, basic descriptive statistics were undergone to assess the knowledge and awareness of the participants. Results: the study has shown that self-reported hepatitis B among the participants was 9.6%. There are areas of hepatitis B misconception in knowledge and awareness related to transmission, modes of prevention and disease state. We have also noticed that prior vaccine coverage was low among the groups, which is also another major concern. Conclusion: the prevalence of hepatitis B from these randomly selected population groups is high. There is also lower vaccine coverage and many misconceptions in knowledge and awareness of hepatitis B. Policymakers should consider these issues seriously to improve the gaps in hepatitis B.

Comparing lengths and inclusion of information in storytelling videos: Implications for Hepatitis B education.

Objectives: This study examined whether adding disease-specific facts into storytelling videos and altering video length would lead to differences in overall ratings of the video and the storyteller, as well as hepatitis B prevention beliefs, among Asian American and Pacific Islander adults. Methods: A sample of Asian American and Pacific Islander adults (N = 409) completed an online survey. Each participant was randomly assigned to 1 of 4 conditions that varied in video length and use of additional hepatitis B facts. Linear regressions were used to examine differences in outcomes (i.e., video rating, speaker rating, perceived effectiveness, hepatitis B prevention beliefs) by conditions. Results: Condition 2, which added facts to the original full-length video, was significantly related to higher speaker ratings (i.e., the storyteller's rating) compared to Condition 1, the original full-length video with no added facts, p = 0.016. Condition 3, which added facts to the shortened video, was significantly related to lower overall video ratings (i.e., how much participants liked the videos overall) compared to Condition 1, p = 0.001. There were no significant differences in higher positive hepatitis B prevention beliefs across conditions. Conclusions: Results suggest that adding disease-specific facts to storytelling for patient education may improve initial perceptions of storytelling videos; however, more research is needed to examine long-term effects. Innovation: Aspects of storytelling videos such as length and additional information have been rarely explored in storytelling research. This study provides evidence that exploring these aspects is informative to future storytelling campaigns and disease-specific prevention.

Health-related quality of life for adults living with hepatitis B in the United States: a qualitative assessment.

BACKGROUND: In 2019, an estimated 296 million people were living with chronic hepatitis B virus (HBV) globally with approximately 2.4 million living within the United States. Those living with HBV require years if not decades of regular monitoring to prevent liver complications from occurring. The aim of this study was to explore the working conceptual framework of health related quality of life (HRQL) for those living with chronic HBV through qualitative analysis. METHODS: Data were collected by in-depth telephone interviews conducted in 2019 using purposeful sampling as part of a disease understanding assessment on the HBV patient experience within the United States. A directed content analysis approach was utilized by creation of a codebook to guide the organization of data, codes were developed by review of the literature (a priori) and through line-by-line reading of a subsample of queries. All transcripts were analyzed by at least two members of the study team and intercoder reliability was assessed using Dedoose software. FINDINGS: A sample of 19 individuals living with chronic HBV were included within this study. Themes identified from transcripts noted the significant overlap between the reported experience of HBV and constructs within the HRQL model. The psychological impact of chronic HBV on study participants' HRQL overall was considerable and contributed to depression, anxiety, homelessness, drug use, and incarceration. CONCLUSION: Our analysis supports the hypothesis that HBV impacts HRQL and often negatively affects emotional health. Our findings suggest that it would be beneficial to include HRQL assessment in the medical management of HBV, so that interventions can focus on reducing the burden of disease and improving quality of life for those living with HBV.

Cure everyone and vaccinate the rest: The patient perspective on future hepatitis B treatment.

Those living with chronic hepatitis B virus (HBV) require years, if not decades, of regular monitoring to prevent liver complications from occurring. An estimated 292 million people were living with chronic HBV globally in 2018 with approximately 2.4 million of those residing within the United States (US). This study is one of the first of its kind that aims to explore the treatment preferences for those living with chronic HBV through qualitative interviews. Participant data were collected by in-depth telephone interviews using a semi-structured discussion guide. A codebook guided the organization of data, and codes were developed by review of the literature (a priori) and through line-by-line reading of a subsample of queries. All data transcripts (N = 19) were independently double coded. Overarching themes identified from the data specific to the treatment modalities and implications of a functional HBV cure included the concern about side effects, treatment modality, frequency, duration, cost-effectiveness and overall impact on their lives. Qualitative data analysis revealed the significant impact that an HBV functional cure would have on quality of life. Benefits of a cure were described as not having a finite course of treatment, improving overall vitality, and reducing the fear and anxiety associated with lifelong infection and potential development of liver cancer. Many individuals expressed the desire for a cure for HBV, stating it would be life-changing, and a 'miracle'. As new therapies are in development, more research should examine in detail the treatment preferences of those living with HBV.

Common concerns, barriers to care, and the lived experience of individuals with hepatitis B: a qualitative study.

BACKGROUND: An estimated between 257 and 292 million people live with chronic HBV globally. While much is known about the causes, and epidemiology of HBV, little is understood about the quality of life and impact of HBV on those living with the infection. METHODS: A random sample of HBV-related email queries sent to the Hepatitis B Foundation, a U.S.-based non-profit organization, over a 12-month period in 2018-2019 were retrieved, tabulated, and analyzed qualitatively to highlight information needs and explore the experiences of people living with HBV and their families and loved ones. Codebook development was informed by the literature and through line-by-line reading of a sub-sample of queries. Data analysis was facilitated by NVivo12 software. Data were coded independently by two members of the research team and intercoder reliability was assessed to assure coding accuracy throughout the coding phase. RESULTS: A total of 338 queries from people around the globe were identified and analyzed. The analysis revealed three thematic groups: 1) health-specific challenges associated with diagnosis and treatment, 2) emotional needs related to experiences with HBV stigma, discrimination, fear, social isolation, and distress and 3) informational needs related to HBV prevention and transmission, and interpretation of laboratory tests. CONCLUSIONS: People living with HBV are in need of information to manage their disease and prevent its spread. Analysis of queries uncovered significant misconceptions about HBV transmission and treatment. Additionally, the emotional and psychological impact of an HBV diagnosis on those living with the infection is significant. There is a clear need for patient and community education to expand knowledge and awareness of HBV globally to achieve 2030 WHO HBV elimination goals.

Understanding Knowledge and Barriers Related to Hepatitis B for Vietnamese Nail Salon Workers in the City of Philadelphia and Some of Its Environs.

In the United States (U.S.), up to 2.2 million individuals have been chronically infected with hepatitis B virus (HBV). Many nail salon workers are at risk for HBV as they are coming from high-risk and traditionally underserved communities. To understand barriers and knowledge associated with HBV in the Vietnamese nail salon community, the Health Belief Model (HBM) was used to qualitatively assess the health needs for the prevention of HBV among Vietnamese nail salon workers in Philadelphia through focus groups and interviews (N = 19). Results revealed several themes that highlight barriers within the Vietnamese nail community. Major themes were the lack of knowledge related to hepatitis B, including significant misconceptions related to symptoms, and how hepatitis B is transmitted and prevented. There were also several barriers to health care access within the Vietnamese nail community including the cost of health care, long work hours, lack of insurance and lack of understanding of current community resources. Additionally, discrimination and stigma related to those infected with hepatitis B emerged as a theme from this data. Those interviewed also noted that the nail training and licensing they received did not highlight hepatitis B and other infectious diseases that can be spread within the nail salon.

Needs of Individuals Living With Hepatitis Delta Virus and Their Caregivers, 2016-2019.

INTRODUCTION: Hepatitis delta virus (HDV) is a serious coinfection of the hepatitis B virus (HBV) that is estimated to affect between 48 to 72 million people worldwide. Data are limited on the informational needs of people living with HDV. The Hepatitis B Foundation, a US-based nonprofit organization that provides support to people living with HBV and HDV, receives emails (queries) as part of a helpline, a service to provide information, resources, and support to people affected by HBV and HDV. METHODS: Query content was analyzed to assess the impact of HDV at the individual level. A total of 65 HDV-related queries from 17 countries were received from October 2016 to January 2019, and all were analyzed for this study. RESULTS: Thematic analysis of queries indicated 4 dominant themes. Three were related to a need for information about 1) the disease and prevention of it, 2) disease symptoms and outcomes, and 3) treatment options. The fourth theme was related to barriers and quality of life. Individuals requested information on treatment options, medication access, diagnostic test interpretation, and clinical trials. CONCLUSION: Our study highlights the needs and lived experience of patients with HDV and summarizes critical information gaps. Findings can inform health care providers, public health professionals, and the pharmaceutical and biotechnology industries about the informational needs and lived experiences of individuals living with HDV and help create future HDV-related educational resources, care, and clinical trials.

Susceptibility to Hepatitis A and B Virus Among Clients at a Syringe Services Program in Philadelphia, 2018.

OBJECTIVES: Although many people who use drugs meet criteria for vaccination against hepatitis A virus (HAV) and hepatitis B virus (HBV), estimates of susceptibility (ie, lack of immunity) are not well established. This study sought to identify the prevalence of and characteristics associated with HAV and HBV susceptibility among people who use drugs attending an urban syringe services program. METHODS: We initiated this seroprevalence study in 2018 among 438 clients of a syringe services program who met study criteria, including provision of a blood specimen and a self-reported history of drug use. We assessed HAV and HBV susceptibility and infection via serological testing. We examined associations between participant characteristics and serology status by using descriptive statistics and multivariable logistic regression models. RESULTS: Of the initial 438 clients identified, 353 (80.6%) met study criteria. Of 352 participants with conclusive HAV test results, 48.6% (n = 171) were HAV susceptible; of 337 participants with conclusive HBV test results, 32.6% (n = 110) were HBV susceptible, 24.3% (n = 82) showed evidence of past or present HBV infection, and 43.0% (n = 145) had vaccine-derived immunity. Compared with participants born before 1970, participants born during 1980-1989 had 5.90 (95% CI, 2.42-14.40) times the odds of HAV susceptibility and 0.18 (95% CI, 0.06-0.53) times the odds of HBV susceptibility, and participants born during 1990-1999 had 6.31 (95% CI, 2.34-17.00) times the odds of HAV susceptibility. Decreased odds of HAV susceptibility were associated with homelessness (adjusted odds ratio = 0.48; 95% CI, 0.28-0.82). CONCLUSION: Despite applicable HAV and HBV vaccination recommendations, substantial gaps exist in HAV and HBV susceptibility among a population of people who use drugs. These findings highlight the need for increased HAV and HBV vaccination efforts among people who use drugs.

A predictive model for hepatitis B infection among high-risk adults using a community-based sample in greater Philadelphia.

Liver cancer is the 3rd deadliest cancer worldwide, with 5-year survival rates of only 15%. In the United States, liver cancer incidence and death rates are increasing at a faster rate than any other cancer and are projected to continue to rise through at least 2030. A significant proportion of these liver cancer cases are due to hepatitis B virus (HBV). Community-based screening is a public health practice working to identify individuals who are living with HBV in underserved communities, particularly Asian American, Pacific Islander and African immigrant populations. This data set includes a total of 3019 individuals considered high risk for HBV tested at community-based testing events between 2008 and 2019. Descriptive results revealed HBV infection rate was 7.9% (N = 229), and 59% (N = 1704) had protective antibodies against HBV. To account for missingness in the data, multiple imputation was preformed and followed by logistic regression to create a predictive model. The results support an association between insurance status and HBV infection in the predictive model. Participant region of origin was also significantly related to HBV infection, and participants who immigrated from the Western Pacific and African World Organization designated regions had higher odds of infection compared to participants from the Americas. Results emphasize the need to continue to expand testing in high-risk populations for HBV.

Exploring the Impact of Storytelling on Storytellers in a Hepatitis B Health Communication Context.

OBJECTIVE: In order to address the stigma associated with hepatitis B, increase awareness, encourage testing, and promote prevention through vaccination, a storytelling campaign featuring people living with hepatitis B and their family members was developed. Storytelling campaigns have been evaluated for their impact on the viewing audience; however, few studies have examined the impact of storytelling on storytellers themselves. This study seeks to examine the experiences of the individuals telling their stories. METHODS: Trained researchers conducted semi-structured interviews (n = 23) with individuals who had participated in a hepatitis B storytelling campaign. RESULTS: A thematic analysis of the interviews produced four overarching themes: 1) Outreach; 2) Emotion; 3) Education; and 4) Stigma. The interviews demonstrate that participants found storytelling to be a positive, comfortable, and emotional experience, and that it motivated them to educate others and increase awareness. Additionally, participants identified the need to increase outreach and address stigma related to hepatitis B. CONCLUSION: While more research is needed, these study results can be used to enhance future engagement, training, and experiences of hepatitis B storytellers. PRACTICE IMPLICATIONS: Findings provide insight into how storytelling can impact the sharing their story and provide important implications for future storytelling campaigns.

Barriers to Hepatitis B Screening and Prevention for African Immigrant Populations in the United States: A Qualitative Study.

Chronic hepatitis B infection (HBV) disproportionately affects African Immigrant (AI) communities in the U.S., with a reported infection rate of 15%. HBV screening rates within these communities are low. This study sought to better understand the socio-cultural determinants associated with low HBV screening among AI communities and identify potential strategies to help inform the development of effective HBV education and screening interventions. Seventeen in-depth interviews were conducted with community health experts working in AI communities throughout the U.S. Interviews explored the potential impact of culture, perception of health, awareness of HBV, religious practices, current screening practice, provider relationship, and behaviors towards general prevention. Interview data were analyzed using thematic analysis. Religious preferences and cultural norms affect health care access, perceptions towards prevention, awareness of HBV, and contribute to myths and stigma within this population. Participants reported a lack of HBV knowledge and awareness and barriers to health care access including, cost, language, racism, understanding of Western Medicine, and usage of traditional medicine. This study elucidates the role of religious and cultural beliefs as barriers to HBV screening and care. Results can contribute to public health efforts to increase awareness, screening and vaccination efforts within AI communities.