Assessment of Parental Understanding of Positive Newborn Screening Results and Carrier Status for Cystic Fibrosis with the use of a Short Educational Video.
Study design (if review, criteria of inclusion for studies)
Randomized study
Participants
One hundred parents of infants identified as CF carriers through NBS
Interventions
parents were randomly assigned by household to either a genetic counseling only group or a genetic counseling and video group.
Outcome measures
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.
Main results
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.
Authors' conclusions
This study demonstrates the effectiveness of an educational video and reinforces the importance of genetic counseling following positive NBS results for CF.