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

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.