226117 Healthcare access and barriers for children with chronic hepatitis B in the U.S.: Implications for improvement in education, support and advocacy

Wednesday, November 10, 2010

C. A. Cohen, MPH, DrPH(c) , Department of Public Health Research, Hepatitis B Foundation, Doylestown, PA
Richard Kahn , Department of Public Health Research, Hepatitis B Foundation, Doylestown, PA
Joan Block, RN, BSN , Hepatitis B Foundation, Doylestown, PA
Alison Evans, ScD , Department of Public Health Research, Hepatitis B Foundation, Doylestown, PA
Chronic hepatitis B virus (HBV) affects 400 million individuals worldwide, and 2 million in the U.S. Chronic HBV leads to premature death from cirrhosis or liver cancer in up to 25% of individuals, particularly among those infected at birth or early childhood. Despite the availability of an effective vaccine, there are 40-60,000 new infections each year in the U.S., including 1,000 perinatal infections. Additionally, an increase in international adoption from HBV-endemic countries contributes to the community of chronically infected children living in the U.S. Children with chronic HBV need appropriate medical management as well as education and social support to help them deal with a myriad of social issues. Specific needs and barriers were assessed via a focus group and online survey, both targeted at parents of children with chronic HBV. Study results uncovered common areas of concern, including difficulty finding a knowledgeable physician, lack of information about treatment options, disclosure of infection status, prevention of transmission to others, future disease progression, and health behaviors through the course of childhood and adolescence. One-third feel they are poorly informed about how to successfully manage their child's condition. Over 50 percent turn to professional organizations, online support groups and websites for HBV-related health information. Disclosure issues and social stigma, especially at school, were a main concern for 50% of respondents. These results indicate the need for innovative, comprehensive educational and advocacy programs for children with chronic HBV and their parents. Programs should include social support, and legal and ethical standards for disclosure.

Learning Areas:
Advocacy for health and health education
Assessment of individual and community needs for health education
Chronic disease management and prevention
Ethics, professional and legal requirements
Protection of the public in relation to communicable diseases including prevention or control

Learning Objectives:
1. Participants will be able to define and describe the health care and social support needs of children with chronic hepatitis B and their parents. 2. Participants will understand the current barriers to finding appropriate and sustainable medical care for children with chronic hepatitis B. 3. Participants will understand important social issues and their implications for children living with a chronic, infectious disease, including disclosure and privacy.

Keywords: Children and Adolescents, Hepatitis B

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I have spent the past 10 years designing and implimenting health education and prevention programs for individuals with chronic hepatitis B. Additionally, I was the lead investigator on this project.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

Back to: 5021.0: Child Health Poster Session