Survey: Lives of Patients Physically, Socially, Emotionally Impacted by Hepatitis B

The researchers explained that future studies should explore how the physical, emotional, and social impact of hepatitis B on patients could be measured and incorporated into clinical management.

Chronic hepatitis B (CHB) has a physical, social, and emotional impact on patients’ lives, according to a study published in the Journal of Patient Experience.

Because it continues to be the leading risk factor for primary liver cancer worldwide, the researchers explained that medical management of CHB focuses on specific clinical endpoints, like liver enzyme normalization and liver cirrhosis evidence. They noted that these endpoints fail to document a patient’s daily health-related quality of life (HRQOL) and address the nonclinical aspects of CHB.

Past studies that used Patient Reported Outcomes (PROs) from those with CHB found decreased HRQOL related to patients’ psychological well-being, physical health, and social functioning. Consequently, the researchers conducted a study to identify the physical, social, and emotional quality of life constructs through PROs from those with CHB; their study also aimed to understand the patient characteristics that are associated with these constructs.

To conduct this study, the researchers used an anonymous online survey to assess the impact of living with CHB as reported by those with the disease. The survey was developed by a panel of liver experts consisting of patients, public health researchers, and providers; it received further review by a hepatologist, FDA staff, and public health and patient partners. The survey was designed as a decision tree consisting of 29 to 39 questions; the number of questions a patient answered depended on their responses to previous questions.

The researchers used a portion of related questions to compose 3 indices: Physical Impact (PI), Social Impact (SI), and Worry Impact (WI). PI included physical symptoms like fatigue, pain, and lack of energy, while SI included avoiding intimate relationships or engaging with social groups; WI included worry and fear about long-term disease progression. All questions used to compose the indices were 5-point Likert scale items ranging from 1 to 5, 1 being the lowest score and 5 being the highest score.

The study was open for 6 months from December 23, 2019, to June 30, 2020. The researchers recruited eligible participants who were aged 18 or older living with CHB through posts on the Hepatitis B Foundation's Facebook and Twitter accounts; recruiting was also conducted through Facebook ads and their monthly e-newsletter.

hepatitis B diagram pointing to the liver | Image credit: Dr_Microbe -

Hepatitis B continues to be the leading risk factor for primary liver cancer worldwide.

Image credit: Dr_Microbe -

Of all eligible respondents who clicked on the survey link, 71% (n = 1707) successfully submitted a complete survey. Most respondents identified as male (67%), and most were younger than 45 years old. Also, most patients identified as persons of color, more specifically African/African American (52%) and Asian/Asian American/Pacific Islander (AAPI; 30%). In terms of disease experience, most respondents (52.8%) received their CHB diagnosis in the last 5 years. Also, a combined 57% had experience with CHB medication, either currently or in the past; of those taking medication, 80% began treatment within the last 5 years.

Most respondents (66%) indicated that the PI of living with CHB was a challenge. Notably, younger respondents between 18 and 45 years old were more likely to report high PI than older respondents aged 46 or older (P ≤ .001). Additionally, those who identified as Black were most likely to report high PI (P ≤ .05).

Also, 55% indicated that the SI of living with CHB was a challenge. Like with PI, they found that younger respondents between the ages of 30 and 45 were most likely to report SI as a challenge (P ≤ .001). Additionally, respondents who identified as either Black or AAPI were more likely to report SI as a challenge, as well as those who had past experiences with CHB medications or were diagnosed within the past 10 years (P .001).

Lastly, 49% of respondents indicated that the WI of living with CHB was a challenge. Those from North America, those who identified as White, and those who were aged 46 or older were more likely to report high WI (P ≤ .001). Female respondents and those who were diagnosed less than 10 years ago were also more likely to report high WI (P ≤ .05).

The researchers acknowledged their study’s limitations, one being that their survey was only offered online in English, so it does not represent all those with CHB. Also, the survey responses could be affected by response bias as those who felt the physical, social, or worry impact of CHB were more likely to respond to the survey. Despite these limitations, the researchers noted that their findings help to inspire future research.

“This study adds to the growing body of evidence that there is physical, social, and emotional impact of hepatitis B on a person’s life,” the authors concluded. “Additional studies should explore this impact, how it affects quality of life among people living with CHB, and how it can be measured and incorporated into clinical management of CHB in the future.”


Ibrahim Y, Umstead M, Wang S, Cohen C. The impact of living with chronic hepatitis B on quality of life: implications for clinical management. J Patient Exp. 2023;10:23743735231211069. doi:10.1177/23743735231211069

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