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Effect of pre-test genetic counseling for deaf adults on knowledge of genetic testing.

ABSTRACT: Empirical data on genetic counseling outcomes in the deaf population are needed to better serve this population. This study was an examination of genetics knowledge before and after culturally and linguistically appropriate pre-test genetic counseling in a diverse deaf adult sample. Individuals ≥18 years old with early-onset sensorineural deafness were offered connexin-26/30 testing and genetic counseling. Participants completed questionnaires containing 10 genetics knowledge items at baseline and following pre-test genetic counseling. The effects of genetic counseling, prior beliefs about etiology, and participant's preferred language on genetics knowledge scores were assessed (n = 244). Pre-test genetic counseling (p = .0007), language (p < .0001), prior beliefs (p < .0001), and the interaction between counseling and beliefs (p = .035) were predictors of genetics knowledge. American Sign Language (ASL)-users and participants with "non-genetic/unknown" prior beliefs had lower knowledge scores than English-users and participants with "genetic" prior beliefs, respectively. Genetics knowledge improved after genetic counseling regardless of participants' language; knowledge change was greater for the "non-genetic/unknown" beliefs group than the "genetic" beliefs group. ASL-users' lower knowledge scores are consistent with evidence that ethnic and cultural minority groups have less genetics knowledge, perhaps from exposure and access disparities. Culturally and linguistically appropriate pre-test genetic counseling significantly improved deaf individuals' genetics knowledge. Assessing deaf individuals' prior beliefs is important for enhancing genetics knowledge.

SUBMITTER: Baldwin EE

PROVIDER: S-EPMC3313024 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Background: Providers of sexual health services play an important role in counseling persons at risk of acquiring HIV. The aim of the present study was to investigate the knowledge of and attitudes toward HIV pre-exposure prophylaxis (PrEP) among counselors in non-governmental counseling centers ("NG counseling centers") and in counseling centers of the local health authorities ("local health offices") in Germany and to determine the extent to which PrEP plays a role in their current counseling practice. Methods: An anonymous cross-sectional study using an online questionnaire was conducted among counselors from sexual health centers across Germany. All NG counseling centers in Germany offering HIV testing were asked to participate. For each NG counseling center, a local health office in the same city was also invited. A "knowledge score" and an "attitudes score" were calculated from single items on various relevant aspects. The association of these scores with the proportion of PrEP advice provided proactively in sessions with men who have sex with men (MSM) and trans persons who met the German and Austrian guideline criteria for being offered PrEP ('at-risk clients') was quantified. Results: From Oct. to Dec. 2018, 145 counselors completed the survey. Both self-assessed knowledge of PrEP and attitudes toward PrEP were greater or more positive among counselors from NG counseling centers compared with counselors from local health offices [Median knowledge score (range 0-20): 18.0 (IQR = 5.0) vs. 14.0 (IQR = 4.0), p < 0.001; median attitudes score (range 0-20): 18.0 (IQR = 4.0) vs. 14.0 (IQR = 6.8), p < 0.001]. The proportion of PrEP advice provided proactively in sessions with at-risk clients was larger in counseling centers than in local health offices [50.0% (IQR = 60.0) vs. 30.0% (IQR = 70.0); p = 0.003]. The results of the multiple linear regression model indicate that knowledge and attitudes of the individual counselors, but not the type of center in which they worked, were independent predictors of the proportion of proactive advice on PrEP. Conclusions: There is room for improvement in the current PrEP counseling practice of sexual health services in Germany. The findings of the present study suggest opportunities to improve the implementation of PrEP as part of a comprehensive HIV prevention strategy.

Project description:BACKGROUND:Genetic testing (GT) for prostate cancer (PCA) is rising, with limited insights regarding genetic counseling (GC) needs of males. Genetic Evaluation of Men (GEM) is a prospective multigene testing study for inherited PCA. Men undergoing GC were surveyed on knowledge of cancer risk and genetics (CRG) and understanding of personal GT results to identify GC needs. METHODS:GEM participants with or high-risk for PCA were recruited. Pre-test GC was in-person, with video and handout, or via telehealth. Post-test disclosure was in-person, by phone, or via telehealth. Clinical and family history data were obtained from participant surveys and medical records. Participants completed measures of knowledge of CRG, literacy, and numeracy pre-test and post-test. Understanding of personal genetic results was assessed post-test. Factors associated with knowledge of CRG and understanding of personal genetic results were examined using multivariable linear regression or McNemar's test. RESULTS:Among 109 men who completed pre- and post-GT surveys, multivariable analysis revealed family history meeting hereditary cancer syndrome (HCS) criteria was significantly predictive of higher baseline knowledge (P?=?0.040). Of 101 men who responded definitively regarding understanding of results, 13 incorrectly reported their result (McNemar's P?<?0.001). Factors significantly associated with discordance between reported and actual results included having a variant of uncertain significance (VUS) (P?<?0.001) and undergoing GC via pre-test video and post-test phone disclosure (P?=?0.015). CONCLUSIONS:While meeting criteria for HCS was associated with higher knowledge of CRG, understanding of personal GT results was lacking among a subset of males with VUS. A more exploratory finding was lack of understanding of results among men who underwent GC utilizing video and phone. Studies optimizing GC strategies for males undergoing multigene testing for inherited PCA are warranted.

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Effect of pre-test genetic counseling for deaf adults on knowledge of genetic testing.

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