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.

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.

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.

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.