Findings from this study indicate that QOL, cognitive, behavioral, and emotional functioning are not globally impaired in children with HCV infection. As a group, the children showed no deficits in QOL, behavioral problems, or clinical depression, relative to normative samples. Furthermore, their functioning in these domains was comparable to or better than that of other children with chronic health conditions. While HCV diagnosis appears to cause stress, depression, and anxiety in newly diagnosed adults (9
), there is little evidence that these symptoms are pervasive in children and adolescents. When compared to rates reported in the adult HCV literature (as high as 75%)(25
), relatively few children have clinical levels of depression, behavioral disturbances, or QOL impairment.
Collectively, primary caregivers also do not appear to experience any significant QOL decrements. However, mothers who vertically transmitted HCV to the enrolled child reported more compromised QOL than caregivers who did not have HCV. This finding is consistent with research showing that QOL deteriorates in the context of chronic HCV (5
), although there is some evidence that QOL improves with successful antiviral therapy (8
). We did not assess mothers’ HCV liver disease status or treatment history, so we are unable to examine the relationship between these parameters and QOL in this study. Clearly, more research is needed to better understand the psychological sequelae associated with parents who have transmitted HCV to their children. In such circumstances, mothers may be simultaneously dealing with the demands of their own illness and coping with issues of disclosing and discussing viral transmission to their child, feelings of guilt or shame, and depression. While some of these issues have been the focus of study within the HIV literature (28
), they have not yet been examined in the context of HCV.
The QOL of children HCV who are treatment-naïve does not appear to be negatively affected, relative to otherwise healthy children. Indeed, QOL in some areas is higher than that reported for children with HIV or diabetes. Moreover, as reported by their caregivers, the QOL of children in our sample was generally higher than that reported by Nydegger et al (14
). The disparate QOL findings in these two studies may be explained, in part, by cultural factors, sample size differences, and sociodemographic and medical factors. For instance, Nydegger et al. studied only 19 children (83% male) with predominantly transfusion-acquired HCV. Of particular note, Nydegger et al. asked 10 adolescents to self-report on their QOL and found that their perceptions, in striking contrast to their parents’ assessment, did not differ significantly from that of otherwise health children.
Our findings suggest that some caregivers of children with HCV are distressed about their children’s medical circumstances, which tends to support Nydegger et al.’s recent findings. In both studies, caregivers report relatively high concern and worry about the children’s current and future physical health, emotional well-being, and general behavior. Parents may also be concerned about their child will be treated by family members, friends, and teachers because of their HCV status (14
). We found that parents of children with more advanced HCV infection seem to be more stressed, which may be due to both the implications of liver disease progression and the behavioral symptoms exhibited by the children. Regardless, these findings highlight the importance of assessing parental adjustment and adaptation throughout their child’s HCV management.
Adults with HCV have been shown to experience cognitive deficits, particularly in attention and higher executive functioning (10
). These deficits may be secondary to the direct effect of HCV on the central nervous system, rather than the indirect effects of fatigue or depression that often accompany HCV (30
). Executive function in the HCV-infected children was slightly impaired relative to normative data and relative to children evaluated for liver transplantation. Those with HCV were rated as having more difficulty with planning and organizational skills, as well as inhibiting one’s own behavior. However, they fare considerably better than children with attention deficit hyperactivity disorder, whose condition is known to significantly impair executive functioning. One-fifth of the HCV study sample showed evidence of problems in executive function. Because we did not directly assess cognitive performance in this sample of children, it is possible that HCV contributes to more subtle neuropsychological difficulties that are not apparent to their parents and, therefore, not detected in this study. Additional research is necessary to more systematically examine whether early stage HCV infection directly affects central nervous system function and impairs academic performance.
There are only limited data on the natural history of HCV in children.(32
) However, available evidence suggests that HCV may represent a milder disease process in children than in adults.(34
) Therefore, HCV, especially in the early stages, may not cause any significant impairment in physical functioning, social activities, and bodily discomfort. Moreover, in the absence of functional impairment, children and adolescents may not experience any behavioral or emotional sequelae that can be linked to their medical diagnosis. Only two children had clinical depression, but it is important to emphasize that those with consistent mood disturbance were not enrolled in the study. Per study protocol, enrolled children with clinically high CDI scores were further interviewed by their pediatrician investigator, who initiated consultation with a mental health professional
It is possible that introducing antiviral treatment may precipitate changes along these behavioral and emotional parameters. For instance, Iorio et al. (13
) reported that QOL deteriorated significantly during antiviral treatment in children. While QOL returned to baseline within 3 months of stopping interferon, it is possible that a very different clinical profile than the one found in our study will emerge for children on antiviral therapy. Notwithstanding the findings of Iorio et al. (13
) and Nydegger et al. (14
), the favorable QOL of children in our study may argue for aggressive antiviral treatment before the development of the cognitive and psychological problems seen in adults with HCV.
Study findings should be examined within the context of a few methodological limitations. First, this is a study of children in the early stages of HCV who are treatment-naïve. Therefore, findings should not be generalized beyond these medical parameters. Second, we compared children with HCV to normative samples of predominantly healthy children, rather than to a matched control group. Third, we relied exclusively on the report of primary caregivers about the functioning of children in this study. Such reports can be biased for many reasons and may not accurately capture the true functional status of the child. Some studies have shown that as children get older, the gap between parent and child ratings of behavior and emotional adjustment widens (35
). Future studies should use multiple informants, including the children themselves, their primary caregivers, and teachers.
In conclusion, children with HCV in its early stages may not show signs of significant cognitive, behavioral, or emotional impairment. Nevertheless, we encourage the close monitoring of these children over time, especially once antiviral treatment has been initiated.