Evaluating parental genetic knowledge of hearing loss with and without pre‐test genetic counseling in a pediatric otolaryngology clinic.
This study evaluated parental knowledge of genetics of sensorineural hearing loss (SNHL) and satisfaction following pre‐test consult with and without genetic counseling (GC). A survey evaluating parents' knowledge of genetics for SNHL with and without GC was administered to parents of children with...
| Publicado en: | Journal of Genetic Counseling Vol. 30; no. 5; pp. 1379 - 1388 |
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| Autores principales: | , , , , |
| Formato: | research tables/charts Journal Article |
| Publicado: |
Wiley-Blackwell
Oct2021
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| Acceso en línea: | Ver este registro en EBSCOhost |
| fields | @attributes: recordID: 1 pdfLink: plink: https://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=153749051&site=ehost-live header: @attributes: shortDbName: ccm uiTerm: 153749051 longDbName: CINAHL Complete uiTag: AN controlInfo: bkinfo: dissinfo: jinfo: jid: 10597700 41A jtl: Journal of Genetic Counseling issn: 10597700 maglogo: N pubinfo: dt: Oct2021 vid: 30 iid: 5 pid: 480 pub: Wiley-Blackwell place: Malden, Massachusetts artinfo: ui: 153749051 149322228 153749051 153749051 10.1002/jgc4.1404 153749051 ppf: 1379 ppct: 9 formats: fmt: – @attributes: type: T – @attributes: type: C – @attributes: type: P tig: atl: Evaluating parental genetic knowledge of hearing loss with and without pre‐test genetic counseling in a pediatric otolaryngology clinic. aug: au: Davis, Dillon Oakes, Lisa Raol, Nikhila Mighion, Lindsey Dedhia, Kavita affil: Division of Genetics and Prevention, Dana‐Farber Cancer Institute, Boston MA,, USA sug: subj: Parents of Children with Disabilities Psychosocial Factors Health Knowledge Genetics Hearing Loss, Sensorineural Genetic Screening Genetic Counseling Consumer Satisfaction Hospitals, Pediatric Otorhinolaryngology Care Human Fisher's Exact Test Mann-Whitney U Test Descriptive Statistics Decision Making Surveys Child Pediatrics Child: 6-12 years ab: This study evaluated parental knowledge of genetics of sensorineural hearing loss (SNHL) and satisfaction following pre‐test consult with and without genetic counseling (GC). A survey evaluating parents' knowledge of genetics for SNHL with and without GC was administered to parents of children with SNHL who were offered genetic testing. The survey also inquired about satisfaction, and decision to pursue genetic testing. Statistical tests included Fisher–Freeman–Halton test and Mann–Whitney test. Forty‐nine participants completed the survey and were seen by both otolaryngology and GC intern (ENT + GC) (n = 24) or by otolaryngology (ENT) only (n = 25). Participation groups were not randomized. There were no significant differences in demographics between groups. Participants in the ENT + GC group had higher average genetics knowledge score of 72% correct (range 22%–100%), compared to the ENT only group with 44% (range 22%–78%) (p <.001). Participants in the ENT + GC group were more likely to know the different test result possibilities (p =.002), the most common form and pathogenic variant associated with SNHL (p <.001), that only a subset of genes are evaluated (p =.004), and that genetic testing may not explain SNHL etiology (p =.013), in comparison with the ENT only group. There was no significant difference in parental satisfaction or ultimate decision to undergo testing between groups. Obtaining genetic testing plays an integral role in the diagnosis and management of SNHL in the pediatric population. Our results suggest that the addition of GC increases parent knowledge of genetics and SNHL. This knowledge allows the family to make a more informed decision as to whether or not to pursue genetic testing. pubtype: Academic Journal doctype: research tables/charts Journal Article ougenre: Article language: English refInfo: holdings: @attributes: islocal: N |
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