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To disclose or not to disclose, that is the question
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When treating pediatric patients with hepatitis C virus infection, physicians will inevitably have to counsel parents on whether to disclose their child’s HCV status to family, friends, the babysitter, and teachers, among others. While safety protocols should be sufficient to protect both parties, there is the concern that other individuals could be at risk of HCV exposure and should be notified; however, informing the community also involves possible social stigma for the child.
Read comments from experts whom Infectious Diseases in Children asked for their opinion on how physicians can best instruct parents on whether a child’s HCV status should be disclosed to the school and other caretakers. We welcome you to share your own impressions of this topic by commenting online at Healio.com/Pediatrics.
Michael Narkewicz, MD
Professor of Pediatrics
University of Colorado School of Medicine
Hewit-Andrews Chair in Pediatric Liver Diseases
Pediatric Services Associate Clinical Director
Associate Dean for Pediatric Clinical Affairs
Parents of children who are infected with hepatitis C often ask me my opinion about disclosing to others that their child has HCV.
My first experience with this issue came almost 20 years ago when a family of a first grader in a small community disclosed their child’s HCV status to their teacher and babysitter. The child was quickly ostracized in the community where the knowledge quickly spread and the family eventually moved so that their child could experience a more normal childhood. This example highlights this complicated issue where, in my opinion, there is no single right answer to this question.
There is no requirement for disclosure of HCV status. The risk of transmission of HCV appears to be much less than that of HIV or HBV with similar exposures, but the risk is not zero. As I discuss this issue with families we take into account the risk of social stigmata and isolation of the infected child and the risk of exposure to individuals who might be at risk for HCV. In the school or daycare setting, all providers should be trained in universal precautions when handling blood or other body fluids. I recommend that families strongly consider disclosure to the school nurse who is trained in confidentiality issues.
I do not recommend general disclosure as a matter of practice due to my experience of many instances of discrimination and isolation of the child. I do advise that the child have a script in case that they do develop a cut or a nosebleed to say: “Aren’t you supposed to use gloves to clean up blood?” It is important that there not be selective application of universal precautions as a result of disclosures as that may indeed increase community risk for blood borne infectious diseases.
Disclosure to friends and other caregivers is a more difficult issue. On the one hand, they may not be knowledgeable in universal precautions and thus be at increased risk for personal exposure. On the other hand, they have much less knowledge of HCV and transmission issues and confidentiality. I advise that they approach this issue with caution but consider disclosure to select individuals.
These issues are more complex for children who have behaviors that may put others at risk, including biting, aggressive behavior such as fighting or self-injuring behaviors. In this circumstance I recommend disclosure as the risk to the caregivers is increased.
All of these issues point us to the logical path of early treatment with safe and effective medications for HCV in children so we will hopefully no longer need to answer this vexing question in the future.
Disclosure: Narkewicz reports no relevant financial disclosures.
Saira A. Khaderi, MD
Assistant Professor of Surgery
Division of Abdominal Transplantation
Baylor College of Medicine
It is estimated there are over seven million people infected with chronic hepatitis C in the United States. An overwhelming majority of these patients are adults, but 23,000 to 46,000 patients are school-aged children under the age of 18. Physicians treating children for hepatitis C will inevitably have to counsel the patient and their family on the decision to disclose the diagnosis to schools and caretakers.
Saira A. Khaderi
Given the low risk of horizontal transmission in children and the considerable social stigma associated with hepatitis C, I do not believe it is necessary to disclose the diagnosis outside the family. Hepatitis C is a blood borne pathogen and is not transmitted through casual contact. Studies show an extremely small risk (<2%) of transmission in households where one member has HCV. The virus is not found in saliva, so transmission through bites in smaller children is also unlikely. Growing up knowing you have a chronic disease is difficult enough as it is; sharing that information with those who are at minimal risk is unnecessary and likely to distress the child.
Disclosure: Khaderi reports no relevant financial disclosures.
Ravi Jhaveri, MD, FIDSA, FPIDS
Associate professor of pediatrics
Division of Infectious Diseases
University of North Carolina School of Medicine
Ravi Jhaveri
Many studies have demonstrated that HCV is not transmitted by the casual contact that occurs in schools or other group activities for children. Concealing a child’s infection only reinforces the stigma that is wrongly associated with HCV. Families should feel comfortable informing friends and teachers of their status. In turn, physicians should advocate for their patients, and communities should educate themselves about HCV and support classmates and teammates by treating them like normal kids.
Disclosure: Jhaveri reports no relevant financial disclosures.