November 14, 2011 — About 85% of parents would prefer to have their newborn tested for congenital cytomegalovirus (CMV), even if testing was not routine, and even if their child turned out to be CMV-positive but never developed problems, according to a new study published online November 14 in Pediatrics.
"To our knowledge, this is the first study to have assessed attitudes about newborn screening for CMV among the general public," write Michael Cannon, PhD, from the Centers for Disease Control and Prevention's National Center on Birth Defects and Developmental Disabilities in Atlanta, Georgia, and colleagues.
The authors note that about 30,000 infants are born each year in the United States with congenital CMV infection, and approximately 1 in 5 develop disabilities, most often sensorineural hearing loss and/or mental retardation.
However, infected infants are usually either asymptomatic at birth or else exhibit nonspecific symptoms such as jaundice or intrauterine growth restriction. Therefore, most cases of congenital CMV go undetected until the child begins having problems, and at that point it is too late for a diagnostic test, which must be done within the first 2 to 3 weeks after birth.
So why is screening not routine?
"One of the criteria for evaluating newborn screening relate to the potential adverse psychosocial effects to children and their parents that might result when infants test positive but do not develop clinical disease, which is of special importance in the case of congenital CMV infection, because ~80% of infected children never develop disabilities," Dr. Cannon and colleagues write.
To find out how parents feel about CMV screening, the researchers reviewed 3922 responses to the 2009 HealthStyles survey by participants who had responded to at least 1 of the 5 questions related to CMV. The survey was designed to reflect the demographics of the overall US population with regard to age, sex, race/ethnicity, household income, and household size.
The survey contained questions covering a wide variety of health-related topics, but the researchers focused specifically on the responses regarding CMV screening:
I would want to have my baby tested for CMV even if my doctor/hospital didn't do it routinely.
I think CMV problems are too rare to worry about.
I would want to know if my child has CMV even if he or she never develops problems.
I would worry that the CMV test would lead to unneeded doctor visits and expenses.
I would be willing to pay $20 to have my baby tested for CMV.
The authors report that the 84% of respondents strongly or somewhat agreed that they would want to have their newborn tested for CMV, even if the test was not performed routinely; 87% strongly or somewhat agreed they would want their child tested, even if it involved an additional cost of $20; and 84% of respondents strongly or somewhat agreed they would want testing for their infant, even if the child never went on to develop CMV-related issues.
However, nearly half of respondents (47%) said they would be concerned that CMV testing might lead to unnecessary physician visits and expenses, and nearly a third said they felt that the risks for CMV infection were too remote to worry about.
On the basis of the researchers' statistical analysis of the parents' attitudes toward CMV screening, they identified 3 clusters of respondents who had children younger than 19 years at the time of the survey: parents who were strongly in favor of screening (31%), parents who were moderately in favor of screening (49%), and parents who were "weakly opposed" to screening (20%).
The authors note that one limitation of the study is that most parents surveyed had probably never heard of CMV before participating in the study, so their responses were based on a hypothetical situation about which they might have little familiarity. "Newborn screening for CMV is a complicated issue," the authors write, "and the scenario and questions might have been difficult to understand."
In any case, the authors conclude, "[m]ost parents in our study considered the potential costs, worry, and anxiety associated with newborn screening for CMV to be acceptable."
However, the authors point out that because most children with congenital CMV infection will not go on to develop disabilities, and as some parents are likely to oppose screening, it might be that instituting voluntary routine screening would make more sense than mandated screening.
They add: "Future pilot screening programs should measure psychosocial outcomes and seek to understand ways of mitigating potential harms."
The authors have disclosed no relevant financial relationships.
Pediatrics. Published online November 14, 2011. Abstract
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