Hepatitis B Foundation calls for consistent monitoring and referral of HBV infected children

Improved monitoring for progression of disease in affected children is essential

An expert panel of nationally recognized pediatric liver specialists convened by the Hepatitis B Foundation is calling for more consistent monitoring and referral of children chronically infected with the hepatitis B virus (HBV). The panel's recommendations for pediatricians and other primary care practitioners stress the need for routine monitoring of children with chronic HBV infections, and timely consultation with a pediatric liver specialist. Their report, published online October 5, 2009 in Pediatrics, is the outcome of a meeting hosted on November 11, 2008 at the Foundation's headquarters in Bucks County, PA. "The lack of clear guidance for the care of affected children is a great concern for parents," said Joan Block, RN, BSN, executive director of the Hepatitis B Foundation. To begin to address this gap, the Foundation brought together seven leading pediatric hepatologists for the first-of-its-kind forum, which was facilitated by two thought leaders in hepatitis B research and treatment.

"Because the majority of infants born in the U.S. are now vaccinated against HBV, most pediatricians don't encounter chronic HBV infection very frequently," said lead author Barbara A. Haber, M.D., of the Children's Hospital of Philadelphia. "And often times children at risk, including immigrants from endemic areas, are not screened and remain undiagnosed."

Chronic HBV infection remains a serious health concern in populations who are not vaccinated, or who are exposed prior to being vaccinated. The panel's report discusses the importance of screening children in high-risk groups, such as those born in countries endemic for HBV.

"Most children with chronic HBV infection are asymptomatic, lacking any signs or symptoms of disease," said Kathleen B. Schwarz, M.D., of Johns Hopkins University School of Medicine, panel member and a co-author of the report. Schwarz stressed, however, that "this is a progressive disease, and children infected chronically with HBV have an increased risk of severe complications as teens or adults, including cirrhosis, and even liver cancer. This is why screening and identification of HBV infection in children is essential."

A challenge facing pediatricians is the lack of clear screening, monitoring and treatment guidelines.

"There are several national and international guidelines available regarding the management of adults with chronic HBV infection," said Brian McMahon, M.D., of the Alaska Native Tribal Health Consortium, panel member and a co-author of the report, "but guidelines for the treatment of children are still evolving, in part because of the limited number of drugs that have been studied in children so far. In the absence of guidelines, the best approach for children is for the primary care physician and a pediatric liver specialist to work in partnership to develop an individualized treatment plan to manage this life-long chronic infection."

"Many children end up at a pediatric liver specialist as a result of parental advocacy," Dr. Haber said. "There needs to be a greater focus on routinely identifying and referring children with chronic HBV."

The panel's report provides recommendations for primary care providers on the initial management of these children, including what tests to conduct to periodically monitor disease progression, and when, based on the test results, a pediatric liver specialist should be consulted. The report includes a flow chart outlining the recommendations, which cover liver function testing, hepatitis B serology and DNA levels, liver ultrasound, alpha-fetoprotein (AFP) testing, and family history. The panel advocates for referral of any child with elevated serum liver enzyme levels, elevated AFP levels, or a family history of liver disease or liver cancer.

"The decision whether or not to treat needs to be evaluated carefully by a pediatrician or specialist familiar with indications for treatment of chronic HBV," Dr. Schwarz said. "The right treatment at the right time can enhance quality and length of life. Inappropriate or unnecessary treatment can result in the emergence of drug-resistant strains of the virus, potentially limiting our treatment options for the future."