CMV is the most common congenital infection in the United States, affecting as many as 40 000 newborns each year [1]. Approximately, 10% of these infants are symptomatic at birth and most of these will suffer permanent neurologic sequelae such as neurodevelopmental delays, motor disabilities, deafness, and blindness [2–5]. Although most infants appear asymptomatic at birth, 10% to 15% of them will develop progressive hearing loss [6]. More children are affected by congenital CMV-related disabilities than by other, better-known childhood diseases, and syndromes, such as fetal alcohol syndrome, Down's syndrome, and neural tube defects [2, 7].

Most congenital CMV infections and related disabilities result from primary (ie, first-time) infections in pregnant women [8]. Many maternal CMV infections might be prevented by simple hygienic precautions, such as frequent and thorough hand washing [7, 9]. Despite this opportunity to prevent infection in mothers and subsequent disability in their children, anecdotal evidence suggests that the general public has little awareness or knowledge of CMV. To further investigate this evidence, and to improve the knowledge base for developing effective interventions, we designed a survey to evaluate awareness and knowledge of CMV among women.

We conducted a survey of congenital CMV awareness at 7 different geographic locations: Atlanta, GA; Birmingham, AL; Cleveland, OH; Provo, UT; Richmond, VA; Chicago, IL; and Houston, TX. At the first four sites, women were recruited from pediatric outpatient clinic waiting rooms. In Richmond, women were recruited from an obstetrics/gynecology clinic. In Chicago, women were recruited from a university's student union center. In Houston, the women who participated in the survey were medical students and support staff in a hospital. At each site, we asked all women aged ≥ 18 years, who were literate in English or Spanish, to complete the short, self-administered written survey. Women were told that the survey would assess their knowledge of newborn infections but not that it was designed specifically to assess knowledge of congenital CMV. The survey assessed demographic information, awareness of CMV, risk factors, modes of transmission, prevention of CMV infection, and symptoms of CMV disease. The survey also collected information about healthcare and prenatal visits, parenting behaviors, and awareness of other birth defects and childhood illnesses. When the women returned their completed surveys, they were given a brochure about congenital CMV. The study was approved by the human subjects review boards of the institutions involved.

To our knowledge, this was the first survey to examine women's knowledge of congenital CMV. Of the women surveyed, only 22% had heard of congenital CMV and very few had specific knowledge about clinical symptoms, modes of transmission, or prevention. There was a tremendous gap between CMV knowledge and congenital CMV disease burden (Figure 1)—women's awareness of CMV ranked last among other birth defects and common childhood illnesses despite CMV being one of the most common and most serious causes of birth defects and disabilities [7].

In order to bridge this gap, women should be educated about congenital CMV. Our survey indicated that healthcare professionals play the most important role in informing women about CMV (Table 4). Yet, only a little over half of women who were working or had worked in the healthcare field were aware of congenital CMV. Women did not specify what type of healthcare work they had done, and many might have done work that required no CMV-related knowledge or training. Nevertheless, the lack of awareness among healthcare professionals shows that there is considerable room for improvement. The curricula of medical, nursing, and midwifery schools should emphasize the importance of educating pregnant women about congenital CMV prevention through improved hand hygiene, as recommended by the American College of Obstetrics and Gynecology (ACOG) [10]. Surveys should be conducted of healthcare providers' knowledge and practices relating to congenital CMV, including how well providers adhere to these ACOG recommendations.

The survey revealed that women who were currently working or had worked in daycare centers were no more aware of congenital CMV than those who had never worked in a daycare setting. Prevalence of CMV in daycare centers is relatively high due to horizontal spread [11], and women who work with children in this setting have a higher risk of acquiring CMV infection. Day care workers should be informed of the risk of acquiring CMV infection and possible effects on the unborn child, as well as strategies for reducing risk of infection.

Many women also indicated that they were informed about CMV through school or class. Information about CMV should be included in secondary-school health curricula and in childbirth courses for expecting parents. Although educational messages need to target all women, a special effort should be made to reach women of lower educational levels, since their awareness was the lowest.

It is important that books and magazines—another key source of CMV information identified by our survey—contain better CMV information than is currently available. Many pregnancy books contain little information on CMV, and sometimes their information is inaccurate. For example, although studies show relatively high rates of transmission from young children to parents [12], one popular pregnancy book states that “Pregnant women with toddlers of their own need not worry about catching CMV; the possibility is extremely remote.” Such inaccuracies might be reduced by consulting physicians who are experts on congenital CMV infection, or by including information from other reliable sources, such as ACOG [10] or the Centers for Disease Control and Prevention (CDC).

The CMV prevention guidelines that pregnant women should receive from healthcare providers, books, magazines, websites, and other media should be straightforward and have a special focus on improved hand hygiene (Figure 2) [7]. Examples of these guidelines can be found at websites such as http://www.cdc.gov/cmv and http://www.bcm.edu/pedi/infect/cmv. Risk of CMV infection is likely to be reduced by adherence to these guidelines [7], and pregnant women have proven receptive to other behavior changes that protect their babies [9, 13–19]. In our survey, for example, nearly all women reported that during their latest pregnancy, they took prenatal vitamins on a regular basis (90%) and did not drink alcohol (94%). Further research is needed to assess which prevention messages work best for CMV and which educational interventions are most effective.

Our survey was subject to several limitations. The questionnaire was not pretested to eliminate ambiguous questions, and some of the respondents did not follow directions when answering questions. Another limitation was that the survey was a convenience sample that may not represent all women in the US. This type of sampling led to significant variation in awareness at different sites. For example, the lower awareness in Chicago was probably due to the women being young, college students, whereas the higher awareness in Houston was probably due to the women being medical students and hospital support staff. Nevertheless, the seven different geographical locations included a diverse population of women, so the results should be reasonably applicable to women of childbearing age. Another study limitation was that guessing may have played a role in answering specific knowledge questions about CMV. For example, many women incorrectly answered that CMV can cause congenital heart defects. This implies that some women may have guessed correctly about other questions. Hence, our survey may overestimate women's knowledge about CMV. Selection bias may also have affected our results. The majority of the surveys were administered in a clinic setting, and women attending a healthcare clinic may be more likely to be aware of health issues than other women. Such bias may have led to overestimates of women's awareness of CMV.

Raising awareness among women and their healthcare providers will be an important first step for preventing congenital CMV. Such awareness can lead to improvement in hygiene behaviors among pregnant women, immediately impacting the congenital CMV disease burden. Furthermore, as women and their healthcare providers become educated about congenital CMV, they will better appreciate the potential for interventions such as prenatal screening and diagnosis [20], newborn screening [21], and antiviral [22] or hyperimmuneglobulin treatments [23], and they will see the urgent need for the development of an effective CMV vaccine [24].