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9/26/2014  |   11:15 AM - 11:45 AM   |  Idaho

The Psychosocial Impact of Newborn CMV Screening: Formative Research from the Houston Congenital CMV Longitudinal Follow-up Study

Newborn CMV screening has been proposed as a way to improve outcomes in children with congenital CMV (cCMV) infection through early detection and intervention. However, psychosocial harms could occur from a positive screening result. To better understand parental responses to newborn cCMV screening, formative research was conducted among parents of children screened or diagnosed at birth for cCMV infection as part of the Houston Congenital CMV Longitudinal Follow-up Study between 1982 and 1992. We conducted four focus groups and 20 interviews (N=32) with three groups of parents of children born with cCMV infection: PG1—asymptomatic children who never developed sequelae; PG2— asymptomatic children who developed sequelae, usually hearing loss; and PG3— symptomatic children, many with serious health problems. Most parents had a positive response towards screening, summed up by, “Knowledge is power.” Parents in all groups felt that the awareness of their child’s condition was “priceless” because it helped them know what to monitor and where to go and who to consult for potential issues. PG2 parents were also thankful for the initial and follow-up testing because it prevented a long, expensive, and emotional diagnostic odyssey. A few parents in PG1 and PG2 were concerned about the anxiety the test might provoke for parents today, since the chance of these children developing sequelae is low, but they still strongly favored screening coupled with parental education. This concern was not shared by parents in PG3 whose children were symptomatic at birth. However, parents in all groups felt that adequate parental education and follow-up services are essential for screening to be a positive experience. Results from this study can help to inform policymakers about the advantages and drawbacks of newborn cCMV screening and can aid in the development of educational materials targeted to parents with newborns who screen positive for CMV.

Michael Cannon (Point of Contact,Primary Presenter,Author), mcannon@cdc.gov;
Michael Cannon is a research epidemiologist at the National Center on Birth Defects and Developmental Disabilities.


Financial - No relevant financial relationship exist.

Nonfinancial - No relevant nonfinancial relationship exist.

Denise Levis (Author), igc1@cdc.gov;
Denise Levis is a health communications specialist with the National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention.

Susan Kirby (Author), susan@kirbyms.com;
Susan Kirby is the founder of Kirby Marketing Solutions

Holly McBride (Author), hollycorwin@gmail.com;
Holly is currently a PA student at Drexel University. She has an MPH and experience in focus groups and CMV research.

Carol Rheaume (Author), carolerheaume@hotmail.com;
Carol Rheaume is an independent research consultant.

Danie Watson (Author), dwatson@watsongroupmarketing.com;
Danie Watson is president of Watson Group Marketing.

Tatiana Lanzieri (Author), uyk4@cdc.gov;
Tatiana Lanzieri is an epidemiologist in the National Center for Immunization and Respiratory Diseases at the Centers for Disease Control and Prevention.

Gail Demmler-Harrison (Author), gdemmler@bcm.edu;
Professor of Pediatrics at Baylor College of Medicine with over 30 years experience in the research and clinical management of infants with congenital CMV infection; PI of the HOuston Longitudinal Congenital CMV Followup Study; co author or author of numerous publicaitons, chapters and presenter at national and international meetings


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