Catherine Freeland1,2, Sean Farrell3,4, Priyanka Kumar3,5, Maureen Kamischke6, Michaela Jackson6, Sierra Bodor6, Timothy M Block6, Rosemary Frasso3, Chari Cohen6. 1. Hepatitis B Foundation, 3805 Old Easton Rd, Doylestown, PA, 18902, USA. Catherine.Freeland@hepb.org. 2. Thomas Jefferson University College of Population Health, Philadelphia, PA, 19107, USA. Catherine.Freeland@hepb.org. 3. Thomas Jefferson University College of Population Health, Philadelphia, PA, 19107, USA. 4. Geisinger Commonwealth School of Medicine in Scranton, Philadelphia, PA, 18510, USA. 5. Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA, 19107, USA. 6. Hepatitis B Foundation, 3805 Old Easton Rd, Doylestown, PA, 18902, USA.
Abstract
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.
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.
Authors: Brennan M R Spiegel; Roger Bolus; Steven Han; Myron Tong; Eric Esrailian; Jennifer Talley; Tram Tran; Jason Smith; Hetal A Karsan; Francisco Durazo; Bruce Bacon; Paul Martin; Zobair Younossi; Siew Hwa-Ong; Fasiha Kanwal Journal: Hepatology Date: 2007-07 Impact factor: 17.425
Authors: Norah A Terrault; Natalie H Bzowej; Kyong-Mi Chang; Jessica P Hwang; Maureen M Jonas; M Hassan Murad Journal: Hepatology Date: 2015-11-13 Impact factor: 17.425