Physical, Social, and Emotional Impacts of Living with Hepatitis B: Implications for Clinical Care and Drug Development

[Yasmin]

Hello Everyone! This is Yasmin Ibrahim, a senior Public Health Program Manager at the Hepatitis B Foundation. I am happy to share with you results from a study we have conducted in 2020 to assess the impact of living with hepatitis B and what do people prioritize in terms of treatment. We wanted to document the physical, emotional, social, and professional impact of living with hepatitis B, and document experiences with stigma and discrimination.

The study included three main activities: an online global survey, 24 one-on-one virtual interviews, and an externally-led Patient Focused Drug Development Meeting (PFDD) that was attended by regulators, drug development companies, researchers, and all the speakers were people living with hepatitis B.

We used the qualitative results from the interviews and PFDD to strengthen the results we have found through the survey.

I will share main highlights from the study, but you can find more details about the methods and the results here.

Key Messages:

The impact of living with hepatitis B extends beyond the lab results and biomedical parameters measured every 6-12 months.

Hepatitis B is not a silent disease as implied for so long.

The emotional and social toll of living with hepatitis B is heavy, but not well documented.

There is a need to incorporate the impact of living with hepatitis B into the treatment algorithm to better assess treatment effects.

There is a need to view hepatitis B management through an “integrated lens” view; to make sure the physical and mental wellbeing of those living with hepatitis B is maintained.

Survey Results: We received 1,700 responses with 83% from participants who lived outside the U.S. International participants came from 99 countries; the top 4 countries were Nigeria [29%], Ghana [10%], India [9%], and the Philippines [7%].

As you can note here, the four countries that contribute to 55% of participants are lower-middle income countries, which will be apparent in some of the systematic challenges that CHB face to both manage their disease and access care and medicine.

Impact of living with Hepatitis B:

Physical Impact: 66% scored high (≥ 3 out of 5*)

Social Impact: 55% scored high (≥ 3 out of 5)

Emotional Impact: 49% scored high (≥ 3 out of 5)

Who was impacted the most:

• Younger participants (18-45) and those not on treatment were significantly more likely to report physical and social impact.

• Participants ≥ 46 years old, and those who have less than college education were less likely to report emotional impact of their disease.

• White participants were least likely to report physical or social impact, but most likely to report emotional impact, possibly reflecting better access to care which results in enhanced access to patient education resources.

Happy to chat more and answer questions! Thanks!

[Bansah1]

Hi Yasmin,
Thank you for sharing this interesting work with us. It is very educative and eye opening. My question is what do you mean by “Hepatitis B is not a silent disease as implied for so long”. Can you expand a bit on this? Is it that people impacted are speaking out and advocating so, more light is shone on the disease therefore not suffering in silent or that the disease itself does not progress silently without much signs or symptoms? Thank you, Bansah1.

[Yasmin]

Thanks Bright for your kind words and for the great question! Although the first explanation sounds interesting and is definitely plausible, what the data showed is that majority of people surveyed were experiencing physical symptoms. As you can see, 66% of survey participants have described their physical experience as challenging (≥ 3 out of 5 point score). This is the highest rate when compared with emotional and social challenges living with hepatitis B. Therefore, our results confirm previous public health and clinical studies that the term “healthy carrier” should not be used with people living with hepatitis B. Happy to chat more.

[Bansah1]

Oh that makes sense. I do agree that the term “healthy carrier” does not paint a truthful picture. As we can see from your work there are people being impacted physically because of this disease. I am surprised that the emotional impact score is lower than that of social impact score. I have always thought that since many of the people diagnosed go through emotional challenges right after diagnosis; I assumed that emotional score will be higher than the social impact. I think factors such as where people live and the culture/beliefs surrounding diseases could have an effect on these scores. It will be interesting to see how much role the above factors for example play here. I could see a connection between those two though. I appreciate your clarification here. Thank you.

[Yasmin]

All great points, Bright. If you click the link and view the entire presentation, you will see exactly those factors interplaying. and I agree with you, the emotional and social impacts do intersect a lot. Please keep in mind that the survey elements that contributed to the emotional impact are related to fears of disease progression and fears of passing on the infection to loved ones, and those elements are in turn affected by access to care, and access to information and knowledge about the disease and its natural course. This is why, hepatitis B should be viewed and managed from an integrated care approach, making sure the clinical and biomedical aspects are checked, but also keeping an eye on the physical, emotional and social implications of the disease. Thanks again for your interest in this work!

[Bansah1]

Got it. Great information. Thanks, Bansah1