title: Assessing parental attitudes toward genetic testing for childhood hearing loss: before and after genetic consultation.
abstract: We report on the development of a Genetic Attitude Assessment Tool (GAAT) to measure parental attitudes in contemplating genetic testing for childhood hearing loss, and to examine the differences in assessments made before and after genetic counseling. The GAAT tool was administered to a convenient sample of 119 parents of children with bilateral sensorineural hearing loss. The respondents completed the survey either before (n = 77) or after (n = 42) genetic counseling. Exploratory Factor Analysis was applied to identify and quantify the underlying psychosocial structure. Our results showed the validated 54-item GAAT instrument contains six subscales: (1) "test intention," (2) "beliefs in non-genetic causes of hearing loss," (3) "deferral of decision to undergo genetic testing," (4) "appropriate use of genetic testing results," (5) "beliefs in the benefits," and (6) "concerns about stigma." The respondents who answered the survey after genetic counseling had higher "test intention" (P = 0.017) and endorsed to a greater extent "beliefs in the benefits" (P < 0.001). They believed to a lesser extent that childhood hearing loss was due to "non-genetic causes" (P < 0.001) and were less inclined to prefer "decision deferral" (P = 0.031). Respondents who themselves had a hearing loss expressed a significantly weaker belief in "non-genetic causes" of hearing loss (P < 0.0001). In conclusion the validated GAAT instrument is responsive to changes in parental attitudes after genetic counseling. The GAAT may be used to monitor parental attitudes serially, to further understand how parental attitudes change from pre genetic counseling, post genetic counseling, to post test result disclosure.
authors.affiliation: Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, NY 10022, USA. liy12@mskcc.org
authors.forename: Yuelin
authors.initials: Y
authors.lastname: Li
authors.forename: Annie G
authors.initials: AG
authors.lastname: Steinberg
authors.forename: Lisa
authors.initials: L
authors.lastname: Bain
authors.forename: Dinah
authors.initials: D
authors.lastname: Yaeger
authors.forename: Ari
authors.initials: A
authors.lastname: Bieler
authors.forename: Rachel
authors.initials: R
authors.lastname: Ewing
authors.forename: Girija
authors.initials: G
authors.lastname: Kaimal
authors.forename: Ian
authors.initials: I
authors.lastname: Krantz
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D005817:Genetic Counseling; D005820:Genetic Testing / Q000379:methods / Q000523:psychology*; D007722:Health Knowledge, Attitudes, Practice; D006319:Hearing Loss, Sensorineural / Q000175:diagnosis* / Q000235:genetics; D006801:Humans; D008875:Middle Aged; D010290:Parents / Q000523:psychology*; D011795:Surveys and Questionnaires; D013997:Time Factors