Factors associated with parental knowledge of neurofibromatosis type 1 (NF1): Parental affected status and genetic counseling.
NF1
education
family history
genetic counseling
health promotion
parents
pediatrics
Journal
Journal of genetic counseling
ISSN: 1573-3599
Titre abrégé: J Genet Couns
Pays: United States
ID NLM: 9206865
Informations de publication
Date de publication:
12 2020
12 2020
Historique:
received:
09
04
2019
revised:
26
02
2020
accepted:
28
02
2020
pubmed:
21
3
2020
medline:
15
4
2021
entrez:
21
3
2020
Statut:
ppublish
Résumé
Neurofibromatosis type 1 (NF1) is a genetic condition characterized by various cutaneous, neurological and psychological manifestations. The present study examined whether parental knowledge of NF1 is associated with a parent's NF1 status, affected or unaffected, and exposure to genetic counseling. Parents of children with NF1 were invited to complete an online survey answering true or false and multiple-choice questions to evaluate their overall knowledge of NF1. The study included 274 respondents, of which NF1 knowledge scores were significantly higher for unaffected parents (p < .001), and for parents who reported previously meeting with a genetic counselor (p < .001). Items pertaining to NF1-related cancer were least likely to be answered correctly. The results of the current study revealed lower overall NF1 knowledge in affected parents and knowledge gaps identifying areas where focused NF1 education may be beneficial.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1151-1158Informations de copyright
© 2020 National Society of Genetic Counselors.
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