A Cross-Sectional Study of Caregiver Perceptions of Congenital Cytomegalovirus Infection: Knowledge and Attitudes about Screening

Abstract

Objectives To understand caregiver knowledge of and attitudes toward congenital cytomegalovirus (cCMV) testing in Utah. Study design We surveyed 365 caregivers whose children were being seen in an otolaryngology clinic at a tertiary pediatric hospital about their knowledge of and attitudes toward cCMV and cCMV screening. Descriptive statistics and cluster analysis were used to examine their responses. Results The majority of caregivers were unsure how cCMV was spread, the symptoms of cCMV, and why cCMV screening of infants was important. Most caregivers did not know that cCMV screening was required by law in Utah if an infant is referred after newborn hearing screening. A majority wanted to know if their child had cCMV even if asymptomatic and were willing to pay $20 for cCMV screening. Caregivers of children who had been tested for cCMV were significantly more likely to be strongly in favor of cCMV screening than expected by chance. Caregivers in the highly knowledgeable cluster were more likely to be strongly in favor of cCMV screening. Conclusions Caregivers frequently were unaware of cCMV and its implications. Attitudes toward cCMV screening generally were positive. Education on epidemiology and impact of cCMV may benefit both prevention of infection and attitudes toward screening.

Feasibility and acceptability of targeted salivary cytomegalovirus screening through universal newborn hearing screening

“…Most parents (>92.0%) indicated the cCMV screen was acceptable to them and did not appear to increase parental anxiety, similar to parental attitudes in the UK 8 and the USA. 19 Our study had a higher participation rate (76.2%) compared to a similar UK study (40.0%) where most salivary swabs were taken by parents and sent for analysis through postal recruitment. This rate is comparable with other studies where swabs were performed by screeners in hospital ((BEST-2 (203/255, 80.0%) 7 and BEST-Q (234/283, 82.7%)).…”

“…The infant with confirmed cCMV saw an infectious diseases specialist and commenced valganciclovir by day 32. Most parents (>92.0%) indicated the cCMV screen was acceptable to them and did not appear to increase parental anxiety, similar to parental attitudes in the UK 8 and the USA 19 …”

Inconsistent Provider Testing Practices for Congenital Cytomegalovirus: Missed Diagnoses and Missed Opportunities

“…Examples of such programs include hearing-targeted cCMV testing, in which all infants who fail their newborn hearing screening are then tested for cCMV, and universal/routine screening programs, in which all infants are screened for cCMV regardless of apparent risk factors [ 40 , 44 , 45 ]. Such programs have been found to be effective and acceptable in several studies [ 46 , 47 , 48 , 49 , 50 ], although the debate about cost-effectiveness persists [ 51 ]. As a more nuanced understanding is being gained about the possible long-term outcomes of cCMV [ 43 , 50 , 52 ], as well as the effectiveness of early interventions [ 53 , 54 , 55 ], the risk–benefit analysis may be more clearly weighted towards systematic screening.…”

American Academy of Audiology Position Statement on Early Identification of Cytomegalovirus in Newborns

“…Because non-Hispanic Blacks and Mexican Americans, and low-or middle-income households, are more likely to have new cCMV infection compared with non-Hispanic Whites, and high-income households, targeted educational efforts may be necessary to benefit these vulnerable groups. [6][7][8] Misinformation about CMV is also common among medical providers. Families of children with cCMV report a medical bias, including health-care workers refusing to see their children, even years later.…”