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Assessment of Parental Understanding of Positive Newborn Screening Results and Carrier Status for Cystic Fibrosis with the use of a Short Educational Video

  • Original Research
  • Published:
Journal of Genetic Counseling

Abstract

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 six weeks 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 six weeks 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.

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Acknowledgments

We would like to thank the families who participated in the study and the Cystic Fibrosis Foundation Screening Improvement Program for funding this study. We would also like to thank Phillip Farrell, MD, PhD and Audrey Tluczek, PhD, RN for sharing the questionnaires used in previous studies. We would also like to thank Meixia Liu, MS for her contributions planning the statistical analyses used in the protocol and Cahill Integrated Media for creating and producing the video.

Conflicts of Interest

The authors have declared no conflicts of interest.

Funding

Supported by a grant from the Cystic Fibrosis Foundation (TEMME11QI0).

Author information

Authors and Affiliations

  1. Cystic Fibrosis Department, Children’s Hospitals and Clinics of Minnesota, Minneapolis, MN, USA

    R. Temme, A. Gruber, M. Johnson, L. Read, Y. Lu & J. McNamara

  2. Children’s Respiratory and Critical Care Specialists, Minneapolis, MN, USA

    J. McNamara

  3. Children’s Hospitals & Clinics of Minnesota, 2525 Chicago Ave. S, Suite 560 CSC, Minneapolis, MN, 55404, USA

    R. Temme

Authors
  1. R. Temme
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  2. A. Gruber
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  3. M. Johnson
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  4. L. Read
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  5. Y. Lu
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  6. J. McNamara
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Corresponding author

Correspondence to R. Temme.

Electronic Supplementary Material

Online Resource 1

A 4.5 minute educational video about false positive newborn screening results for cystic fibrosis and the genetics of cystic fibrosis. (MPG 45349 kb)

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Temme, R., Gruber, A., Johnson, M. et al. Assessment of Parental Understanding of Positive Newborn Screening Results and Carrier Status for Cystic Fibrosis with the use of a Short Educational Video. J Genet Counsel 24, 473–481 (2015). https://doi.org/10.1007/s10897-014-9767-7

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  • DOI: https://doi.org/10.1007/s10897-014-9767-7

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