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1.
J Viral Hepat ; 28(11): 1539-1544, 2021 11.
Artículo en Inglés | MEDLINE | ID: mdl-34363715

RESUMEN

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.


Asunto(s)
Hepatitis B Crónica , Hepatitis B , Hepatitis B/prevención & control , Virus de la Hepatitis B , Hepatitis B Crónica/prevención & control , Humanos , Calidad de Vida , Vacunación
2.
BMC Public Health ; 21(1): 1004, 2021 05 28.
Artículo en Inglés | MEDLINE | ID: mdl-34044808

RESUMEN

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.


Asunto(s)
Hepatitis B , Calidad de Vida , Accesibilidad a los Servicios de Salud , Hepatitis B/epidemiología , Humanos , Investigación Cualitativa , Reproducibilidad de los Resultados
4.
J Patient Rep Outcomes ; 5(1): 121, 2021 Nov 10.
Artículo en Inglés | MEDLINE | ID: mdl-34757456

RESUMEN

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.

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