Patient Related Outcome Measures (Mar 2020)
Impact of Stigma on People Living with Chronic Hepatitis B
Abstract
Jayne Smith-Palmer,1 Karin Cerri,2 Urbano Sbarigia,2 Eric KH Chan,3 Richard F Pollock,1 William J Valentine,1 Kristien Bonroy2 1Ossian Health Economics and Communications, Basel, Switzerland; 2Janssen Pharmaceutica NV, Beerse, Belgium; 3Janssen Global Services, LLC, Raritan, NJ, USACorrespondence: Jayne Smith-PalmerOssian Health Economics and Communications GmbH, Bäumleingasse 20, Basel 4051, SwitzerlandTel +41 61 271 6214Email [email protected]: People with chronic infectious diseases such as hepatitis B can face stigma, which can influence everyday life as well as willingness to engage with medical professionals or disclose disease status. A systematic literature review was performed to characterize the level and type of stigma experienced by people infected with hepatitis B virus (HBV) as well as to identify instruments used to measure it.Methods: A literature review was performed using the PubMed, Embase and Cochrane Library databases to identify studies describing HBV-related stigma. For inclusion, articles were required to be published in full-text form, in English and report quantitative or qualitative data on HBV-related stigma that could be extracted.Results: A total of 23 (17 quantitative and 6 qualitative) articles examined HBV-related stigma. The scope of the review was global but nearly all identified studies were conducted in countries in the WHO Southeast Asia or Western Pacific regions or within immigrant communities in North America. Several quantitative studies utilized tools specifically designed to assess aspects of stigma. Qualitative studies were primarily conducted via patient interviews. Internalized and social stigma were common among people living with chronic HBV . Some people also perceived structural/institutional stigma, with up to 20% believing that they may be denied healthcare and up to 30% stating they may experience workplace discrimination due to HBV.Conclusion: HBV-related stigma is common, particularly in some countries in Southeast Asia and the Western Pacific region and among Asian immigrant communities, but is poorly characterized in non-Asian populations. Initiatives are needed to document and combat stigma (particularly in settings/jurisdictions where it is poorly described) as well as its clinical and socioeconomic consequences.Keywords: hepatitis B, stigma, discrimination