caa a22 4500 605544476 CHVBK 20210128100931.0 cr unu---uuuuu 210128e20150601xx s 000 0 eng 10.1007/s10897-014-9767-7 doi (NATIONALLICENCE)springer-10.1007/s10897-014-9767-7 Assessment of Parental Understanding of Positive Newborn Screening Results and Carrier Status for Cystic Fibrosis with the use of a Short Educational Video [Elektronische Daten] [R. Temme, A. Gruber, M. Johnson, L. Read, Y. Lu, J. McNamara] Many children are identified as unaffected carriers for cystic fibrosis (CF) through newborn screening (NBS) programs. The aim of this study was to improve parental understanding of positive NBS results using an educational video in addition to genetic counseling. One hundred parents of infants identified as CF carriers through NBS were randomly assigned by household to either a genetic counseling only group or a genetic counseling and video group. All participants completed a knowledge-based questionnaire before, immediately after, and sixweeks following genetic counseling. This included questions about resources accessed before and after the appointment. Seventy-two percent of participants accessed resources on their own prior to genetic counseling; these participants scored significantly higher on the pre-counseling questionnaire (p = 0.03). Post-counseling knowledge scores for both groups significantly improved after genetic counseling (p < 0.001). Post-counseling scores were significantly higher in the video group compared to the non-video group (p = 0.02). Knowledge was retained sixweeks following genetic counseling. This study demonstrates the effectiveness of an educational video and reinforces the importance of genetic counseling following positive NBS results for CF. National Society of Genetic Counselors, Inc., 2014 Cystic fibrosis nationallicence Newborn screening nationallicence Video nationallicence Genetic counseling nationallicence False positive nationallicence Carrier nationallicence Temme R. Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA aut Gruber A. Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA aut Johnson M. Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA aut Read L. Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA aut Lu Y. Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA aut McNamara J. Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA aut Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 473-481 1059-7700 24:3<473 2015 24 10897 https://doi.org/10.1007/s10897-014-9767-7 text/html Onlinezugriff via DOI BK010053 XK010053 XK010000 Metadata rights reserved Springer special CC-BY-NC licence nationallicence 1 research-article jats NATIONALLICENCE NATIONALLICENCE NL-springer NATIONALLICENCE 856 40 https://doi.org/10.1007/s10897-014-9767-7 text/html Onlinezugriff via DOI NATIONALLICENCE 700 1- Temme R. Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA aut NATIONALLICENCE 700 1- Gruber A. Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA aut NATIONALLICENCE 700 1- Johnson M. Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA aut NATIONALLICENCE 700 1- Read L. Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA aut NATIONALLICENCE 700 1- Lu Y. Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA aut NATIONALLICENCE 700 1- McNamara J. Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA aut NATIONALLICENCE 773 0- Journal of Genetic Counseling Springer US; http://www.springer-ny.com 24/3(2015-06-01), 473-481 1059-7700 24:3<473 2015 24 10897