Abstract
Objectives: We sought to understand long-term retrospective parental perceptions of the utility of newborn screening in a context where many affected children never develop sequelae but where intensive support services and ongoing healthcare were provided. Study design: Qualitative study. Methods: Focus groups and interviews among parents (N = 41) of children with congenital CMV who had been enrolled in a long-term follow-up study at a large medical college for a mean of 22 years following diagnosis. Groups included parents whose children were: symptomatic at birth; initially asymptomatic but later developed sensorineural hearing loss; and who remained asymptomatic into adulthood. Results: With proper follow-up support, newborn CMV screening was viewed positively by parents, who felt empowered by the knowledge, though parents often felt that they and healthcare providers needed more information on congenital CMV. Parents in all groups valued newborn CMV screening in the long term and believed it should be embedded within a comprehensive follow-up program. Conclusions: Despite initial distress, parents of CMV-positive children felt newborn CMV screening was a net positive. Mandatory or opt-out screening for conditions with variable presentations and treatment outcomes may be valuable in contexts where follow-up and care are readily available.
Highlights
Congenital cytomegalovirus infection occurs in 4.5 per 1000 live births in the United States and is a major cause of birth defects and developmental disabilities, including hearing loss and intellectual disability [1]
In September 2013, we conducted focus groups and interviews with parents of children with Congenital cytomegalovirus (cCMV) enrolled in a longitudinal study at a large medical college, hereafter referred to as the CMV Study
We recruited parents from three groups, defined by their child’s health outcomes at birth and during follow-up, and our study included a convenience sample of parents of children with cCMV enrolled in the CMV Study who agreed to participate in focus groups or interviews (Table 1)
Summary
Congenital cytomegalovirus (cCMV) infection occurs in 4.5 per 1000 live births in the United States and is a major cause of birth defects and developmental disabilities, including hearing loss and intellectual disability [1]. Some babies with cCMV infection exhibit symptoms at birth; others develop symptoms during childhood, but most—approximately. 4000 US children each year develop disabilities due to cCMV infection. Symptomatic children may derive limited benefit from antiviral medications [3]. Asymptomatic children may benefit from early detection and intervention for hearing loss [4]. Newborn CMV screening is not part of the current recommended uniform panel [5,6]
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
