Assessment of Parental Understanding of Positive Newborn Screening Results and Carrier Status for Cystic Fibrosis with the use of a Short Educational Video
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| 024 | 7 | 0 | |a 10.1007/s10897-014-9767-7 |2 doi |
| 035 | |a (NATIONALLICENCE)springer-10.1007/s10897-014-9767-7 | ||
| 245 | 0 | 0 | |a Assessment of Parental Understanding of Positive Newborn Screening Results and Carrier Status for Cystic Fibrosis with the use of a Short Educational Video |h [Elektronische Daten] |c [R. Temme, A. Gruber, M. Johnson, L. Read, Y. Lu, J. McNamara] |
| 520 | 3 | |a 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. | |
| 540 | |a National Society of Genetic Counselors, Inc., 2014 | ||
| 690 | 7 | |a Cystic fibrosis |2 nationallicence | |
| 690 | 7 | |a Newborn screening |2 nationallicence | |
| 690 | 7 | |a Video |2 nationallicence | |
| 690 | 7 | |a Genetic counseling |2 nationallicence | |
| 690 | 7 | |a False positive |2 nationallicence | |
| 690 | 7 | |a Carrier |2 nationallicence | |
| 700 | 1 | |a Temme |D R. |u Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA |4 aut | |
| 700 | 1 | |a Gruber |D A. |u Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA |4 aut | |
| 700 | 1 | |a Johnson |D M. |u Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA |4 aut | |
| 700 | 1 | |a Read |D L. |u Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA |4 aut | |
| 700 | 1 | |a Lu |D Y. |u Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA |4 aut | |
| 700 | 1 | |a McNamara |D J. |u Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA |4 aut | |
| 773 | 0 | |t Journal of Genetic Counseling |d Springer US; http://www.springer-ny.com |g 24/3(2015-06-01), 473-481 |x 1059-7700 |q 24:3<473 |1 2015 |2 24 |o 10897 | |
| 856 | 4 | 0 | |u https://doi.org/10.1007/s10897-014-9767-7 |q text/html |z Onlinezugriff via DOI |
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| 900 | 7 | |a Metadata rights reserved |b Springer special CC-BY-NC licence |2 nationallicence | |
| 908 | |D 1 |a research-article |2 jats | ||
| 949 | |B NATIONALLICENCE |F NATIONALLICENCE |b NL-springer | ||
| 950 | |B NATIONALLICENCE |P 856 |E 40 |u https://doi.org/10.1007/s10897-014-9767-7 |q text/html |z Onlinezugriff via DOI | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Temme |D R. |u Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Gruber |D A. |u Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Johnson |D M. |u Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Read |D L. |u Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a Lu |D Y. |u Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 700 |E 1- |a McNamara |D J. |u Cystic Fibrosis Department, Children's Hospitals and Clinics of Minnesota, Minneapolis, MN, USA |4 aut | ||
| 950 | |B NATIONALLICENCE |P 773 |E 0- |t Journal of Genetic Counseling |d Springer US; http://www.springer-ny.com |g 24/3(2015-06-01), 473-481 |x 1059-7700 |q 24:3<473 |1 2015 |2 24 |o 10897 | ||