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Published on: July 6, 2013
Family Perceptions of Newborn Cytomegalovirus Screening: A Qualitative Study
Michael J Cannon1, Denise M Levis1, Holly McBride2
1National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA 30333, USA.
Insights
Newborn screening for congenital cytomegalovirus (CMV) is viewed positively by parents, even when children have no symptoms. Long-term follow-up and comprehensive care are crucial for maximizing the benefits of CMV screening.
Area of Science:
- Pediatrics
- Genetics
- Public Health
Background:
- Congenital cytomegalovirus (CMV) infection is a leading cause of non-genetic sensorineural hearing loss in children.
- Newborn screening for congenital CMV aims to identify affected infants for early intervention, though outcomes can vary widely.
Purpose of the Study:
- To explore long-term parental perceptions of the utility of newborn screening for congenital CMV.
- To understand the value of screening in contexts with variable sequelae but available support services.
Main Methods:
- Qualitative study utilizing focus groups and interviews with 41 parents of children diagnosed with congenital CMV.
- Participants' children were categorized based on symptom presentation (symptomatic, initially asymptomatic with later hearing loss, or asymptomatic).
- Data collected after a mean follow-up of 22 years post-diagnosis.
Main Results:
- Parents generally perceived newborn CMV screening positively, feeling empowered by the knowledge gained.
- Participants emphasized the need for more information for both parents and healthcare providers regarding congenital CMV.
- Long-term value was recognized, with a strong belief that screening should be integrated into comprehensive follow-up programs.
Conclusions:
- Despite initial distress, parents found newborn CMV screening to be a net positive, especially with adequate support.
- Mandatory or opt-out screening is potentially valuable for conditions with diverse outcomes when robust follow-up care is accessible.
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.
