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Setting Things Straight: How to Counsel Parents of HCV-Infected Children
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In the January Issue, HCV Next highlighted the next treatment frontier in eradicating maternal-to-child transmission of hepatitis C. However, counseling a family, young child or adolescent about this “virus” and “liver disease” requires more than just an understanding of hepatitis C’s pathophysiology. As providers, we need to be prepared to equip families and their children with the knowledge and practical solutions to every day questions such as: “Can Johnny play football?” “Do we need to disclose his diagnosis to the school?” “What advice do you have for Sally who is going to be a freshman in college next year?”
Daniel H. Leung
The stigma that hepatitis C often carries knows no demographic or socioeconomic boundaries. Parents are sophisticated and often come to the office armed with information they have acquired via blogs or the Internet. At times, providers will need to dispel certain misconceptions or fears of having a child with HCV. Knowing how to handle “everyday” concerns of parents of a child (biological or adoptive) with HCV will instill confidence in both the caregivers and your role as their health care provider.
How do we best distill evidence-based guidelines and recommendations for parents of children who are newly diagnosed with hepatitis C? Here are the most common questions I receive from both parents and pediatricians in “developmental order” and my responses, which I have backed with best evidence practices.
Q: What’s the earliest I can test my child for HCV?
This question is often posed by the HCV-positive mother. Because the hepatitis C antibody crosses the placenta, testing for the antibody is not helpful until about 18 months of age. If positive at that time, we will confirm by checking virus levels. If you are particularly anxious about testing your child, let’s wait until he/she is at least 2 months old, but we can also recheck when he/she turns 1 year of age.
Q: When did my child contract HCV?
This question is often posed by the father of the child. It is not known exactly when mother-to-child HCV transmission takes place. Many factors that may increase risk may or may not be avoidable, such as high maternal virus levels, prolonged rupture of membranes or fetal scalp vein monitoring.
Q: Can I continue breast-feeding my child?
Breast-feeding does not increase HCV transmission, so absolutely continue. It would be wise, however, to avoid nursing if you have cracked nipples or bleeding. Also, if you notice that you are jaundiced or your viral levels are high, it may be best to stop nursing until you have been evaluated by your doctor.
Q: Will my child clear the virus? What is my child’s prognosis?
Fewer than half of children will clear the infection on their own and the majority will develop chronic HCV. Most children with chronic HCV do very well, throughout childhood and few ever have any symptoms at all. Only 1% to 2% of children develop cirrhosis.
Q: Does hepatitis C affect development?
We know that developmental delay, learning disorders and cognitive deficits can occur but are less severe than those of attention-deficit/hyperactivity disorder or autism.
Q: Are there certain things my young child should avoid? Any major restrictions?
In general, restrictions are minimal, barring unique situations. Your child may participate in any sporting activity. Certainly, activity or behavior that exposes your child’s blood or bodily fluids should be handled with great care. If your child has a bloody nose, is on her period or injures themselves during a sporting event, it’s important to encourage the provider (school nurse, teacher, coach or yourself) to wear gloves when handling blood and use a bleach product (spray or wipes) to clean surfaces. They should be instituting these universal precautions with all children, not just those who are HCV-positive. Kissing, hugging, sharing utensils, cups and towels are generally very safe. Sharing toothbrushes and razors must be avoided due to potential blood-to-blood transfer.
Q: Do I need to disclose my child’s diagnosis to the daycare or school?
Unfortunately, no data are available regarding the risk of passing HCV in infant day care centers. In general, risk of transmission in these settings is negligible. If you and the staff who cares for your child practice the required “universal precautions” I’ve just mentioned, risk to other children is almost zero. You are not obligated to share your child’s hepatitis C status. If you have developed a trustworthy relationship with the school nurse or teacher and feel comfortable sharing your child’s diagnosis to ensure safety, that is fine.
Q: What types of behavior or settings should I avoid or be aware of?
This question is posed by the child upon reaching adolescence. IV drug use with sharing of contaminated needles or any other device carries high risk of spreading HCV infection. Sharing of nasal straws (cocaine use) and tattooing/body piercing, particularly at unregulated establishments, can also transmit HCV infection. While there is a relatively low risk of HCV transmission through sexual activity, safe-sex practices are recommended. There is consensus that the risk of transmission by sexual intercourse in stable relationships is very, very small. Alcohol can be especially harmful since you already have a liver disease and should be avoided.
Q: What online resources or materials do you recommend?
I have found the following to be most helpful in educating parents and my patients about this disease and treatment options.
– US Department of Veterans Affairs: http://www.hepatitis.va.gov
– Centers for Disease Control and Prevention: http://www.cdc.gov/hepatitis/c/
Q: Can my child be treated?
If it’s indicated, absolutely. The decision to treat is an important one, and one that we need to make together after the appropriate tests. The medications historically used to treat hepatitis C for the last 10 years require weekly injections and tend to have more side effects such as flu-like illnesses, hair loss, rash and decreased blood cell counts. In special cases, we may consider still using this medication if your child’s profile predicts a very good response.
A new generation of all-oral medications that specifically target enzymes that the virus requires to replicate was approved for adults in late 2013 and has a cure rate greater than 90% in most patients. There will soon be a variety of these combination drugs available with similar usefulness in children. The advantages are a shorter treatment period, all-oral regimens and very few side effects. However, these medications are currently being studied in both adolescents and in children with specific types of hepatitis C through industry-sponsored clinical trials. (Depending if your pediatric-affiliated institution is participating in these trials, you may certainly discuss eligibility or refer.)
References:
Bortolotti F, et al. Gastroenterology. 2008; doi:10.1053/j.gastro.2008.02.082.Mack CL, et al. J Pediatr Gastroenterol Nutr. 2012; doi:10.1097/MPG.0b013e318258328d.
Mast EE, et al. J Infect Dis. 2005;192:1880-1889.
Omland LH, et al. J Hepatol. 2010; doi:10.1016/j.jhep.2010.01.033.
Strader DB, et al. Hepatology. 2004;39:1147-1171.
Wirth S. World J Gastroenterol. 2012; doi:10.3748/wjg.v18.i2.99.
For more information:
Daniel H. Leung, MD, is an assistant professor of pediatrics at Baylor College of Medicine and the medical director of the Viral Hepatitis Clinic at Texas Children’s Hospital. He can be reached at 6701 Fannin St., CCC 1010, Houston, TX 77030; email: dhleung@texaschildrens.org.
Disclosure: Leung reports no relevant financial disclosures.