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

Priyanka Kumar, MD, MPH; Catherine Freeland, MPH; Sierra Bodor; Sean Farrell; Chari Cohen, DrPH, MPH; Rosemary Frasso, PhD, MSc


Prev Chronic Dis. 2020;17(12):e159 

In This Article

Abstract and Introduction


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.


Viral hepatitis accounts for an estimated 1.34 million deaths worldwide per year. Since 1990, viral hepatitis mortality has increased by 63%, and in 2017, hepatitis was the seventh leading cause of death in the world.[1–4] Hepatitis delta virus (HDV) is a serious coinfection of HBV that is estimated to affect between 48 and 72 million people (13%–14.5%)[5–7] of the 292 million people living with chronic hepatitis B (CHB) worldwide.[8]

Available data suggest that HBV–HDV coinfection is most prevalent in Central Asia, Eastern Europe, Central Latin America, and West and Central Africa.[5–7] People most at risk for HBV–HDV coinfection are likely to be living in or have emigrated from these regions, have a history of intravenous drug use, are men who have sex with men, have HIV or hepatitis C virus (HCV), or have multiple sex partners.[9,10] The rates of coinfection with HDV range from more than 10% to as high as 70% in countries in Africa, Asia, and parts of South America.[11] In industrialized countries, such as Germany, England, and France, studies have shown recent increases in HDV prevalence.[12,13] Epidemiologic and clinical research on HDV is sparse, contributing to an incomplete understanding of the actual disease burden, low global testing rates, and lack of effective treatments.[12–14] Only people who already have CHB, or people who contract HBV and HDV through simultaneous exposure, can become infected,[14] creating a defined risk group. Despite these factors, awareness among patients and providers is low, and treatment of HDV is far behind medical advancements for HBV and HCV.[15,16]

No US Food and Drug Administration–approved treatment of HDV exists, and the only somewhat effective treatment is pegylated interferon, with only 25% to 30% of patients able to control the virus with weekly injections administered for at least 1 year.[17,18] When coinfection is poorly controlled, patients are 3 times as likely to develop cirrhosis and liver cancer, compared with HBV infection alone. Approximately 70% to 90% of coinfected patients develop cirrhosis within 5 to 10 years.[19–22] Despite its discovery more than 40 years ago, knowledge of HDV is limited, and little is known about the informational needs and experiences of people living with HDV.