1. Public use of an Internet-based support group for chronic hepatitis B carriers: Answering some basic questions
1Chari Cohen, MPH, 2Amy Jessop, PhD, MPH,
1Molli Conti, 1Joan Block, RN
1Hepatitis B Foundation
2Temple University

2. Hepatitis B is the world’s most common serious liver infection
In the world
Over 400 million chronically infected individuals
10-30 million new infections each year
1 million deaths each year
In the US
Over 1.25 million chronically infected individuals
Almost 100,000 new infections each year
deaths each year

3. Needs of Chronic Carriers
Ongoing symptoms, side effects of medications, unknown future, protection of family, money/insurance issues, social issues
Great need for information and support: where do they get it?
What is the impact of an online support group for chronic carriers of Hepatitis B?

4. Methodology Target Population:
Members of the online HB-L at
Survey ed to all members of the HB-L, re-posted once with a reminder notice
Only surveys from chronic carriers over the age of 18, residing in the U.S. were included in the SPSS analysis
Survey Responses: over 400 members, only 200 from the U.S., only 45 active at time of survey (response rate = 38/200?)

5. Demographic Profile of Respondents (N=38)
52.6% female, 47.4% male
Mean Age 42 (Age range 20 – 65)
36.8% urban, 55.3% suburban, 7.9% rural
Highest level of education completed
Some HS %
Completed HS %
Some College %
Completed College 23.7%
Some Graduate %
Completed Graduate School 26.3%
This is a very educated group!

6. Why are participants joining the HB-L?
Information and Support:
To get hepatitis B information 97.4%
To give hepatitis B information 23.7%
To get support from others 78.9%
To give support to others 60.5%
Computer-Related Motivations:
Connecting with different people 86.8%
Choosing messages to read/answer 81.6%
Convenience %
Ease %
24-hour access %
communicating with people far away 52.6%
Ability to remain anonymous %

7. How often do HB-L members participate?
79% of survey participants check HB-L messages at least once a day
65.8% of survey participants send messages once a week or less
50% of survey participants spend at least one hour per session
50% of survey participants spend 30 minutes or less

8. Supportive Aspects of the HB-L How comfortable are participants with self-disclosure to the group?

9. Supportive Aspects of the HB-L Continued
Do participants seek support from the group?
Never Sometimes Often Routinely
10.5% % % %
Do participants feel that they successfully receive support from the group?
00.0% % % %
Link between self-disclosure and support

10. Informational Aspects of the HB-L What information source is used the most and is the most useful?
Source Used the Most:
Online support group %
Health care professional %
Health-related web site %
Professional organization %
Medical or health journal %
Source that is the Most Useful:
Online support group %
Medical or health journal %
Professional organization %
Health care professional %
Health-related web site %

11. Informational Aspects of the HB-L Do participants trust the information and advice posted to the group?

12. Informational Aspects of the HB-L Cont. Do Participants use the info
Informational Aspects of the HB-L Cont. Do Participants use the info. and advice from the group to make health behavior changes?

13. Informational Aspects of the HB-L Cont. Do Participants use the info
Informational Aspects of the HB-L Cont. Do Participants use the info. and advice from the group to make treatment decisions?

14. Informational Aspects of the HB-L Cont
Informational Aspects of the HB-L Cont. In what areas do participants want or need more information?
Available treatment %
Diet %
Doctor-patient
Communication 63.2%
Diagnosis %
Prevention %
Vaccination %
Transplant %
Insurance %
Combined diagnoses 2.6%
Test/lab results %

15. Informational Aspects of the HB-L What do participants get from their physicians?
44.7% are satisfied with the quality of info. they get
52.6% are satisfied with the quantity of info. they get
81.6% get more info. from the HB-L than from their physician
Do you think your physician is knowledgeable about:
Hepatitis B diagnosis %
Hepatitis B management %
Hepatitis B treatment %
Prevention of hepatitis B %
Alternative therapies %
Diet and nutrition %

16. Conclusions and Future Directions
Online support groups: successful, convenient method for people with chronic conditions to exchange information & support.
The HB-L: primary source of information for participants; plays a role in lifestyle and treatment changes.
Future hep B programs: need to focus on providing info. to chronic carriers, increasing doctor-patient communication, & educating physicians on the management & treatment of chronic hepatitis B.
The information and support seeking behaviors of the public are becoming more Internet-based. The public health community needs to be aware of these changes and prepared to meet the challenges that they will bring.

17. Thanks! Dr. Amy Jessop Dr. Tom Gordon Dr. Alice Hausman Molli Conti
Temple University Department of Health Studies
Dr. Amy Jessop
Dr. Tom Gordon
Dr. Alice Hausman
Hepatitis B Foundation
Molli Conti
Joan Block
HB-L Owners/Managers
Steve Bingham
Sheree Martin