Dataset Information

Patients' understanding of and responses to multiplex genetic susceptibility test results.

ABSTRACT: PURPOSE:Examination of patients' responses to direct-to-consumer genetic susceptibility tests is needed to inform clinical practice. This study examined patients' recall and interpretation of, and responses to, genetic susceptibility test results provided directly by mail. METHODS:This observational study had three prospective assessments (before testing, 10 days after receiving results, and 3 months later). Participants were 199 patients aged 25-40 years who received free genetic susceptibility testing for eight common health conditions. RESULTS:More than 80% of the patients correctly recalled their results for the eight health conditions. Patients were unlikely to interpret genetic results as deterministic of health outcomes (mean = 6.0, s.d. = 0.8 on a scale of 1-7, 1 indicating strongly deterministic). In multivariate analysis, patients with the least deterministic interpretations were white (P = 0.0098), more educated (P = 0.0093), and least confused by results (P = 0.001). Only 1% talked about their results with a provider. CONCLUSION:Findings suggest that most patients will correctly recall their results and will not interpret genetics as the sole cause of diseases. The subset of those confused by results could benefit from consultation with a health-care provider, which could emphasize that health habits currently are the best predictors of risk. Providers could leverage patients' interest in genetic tests to encourage behavior changes to reduce disease risk.

SUBMITTER: Kaphingst KA

PROVIDER: S-EPMC3417078 | biostudies-literature | 2012 Jul

REPOSITORIES: biostudies-literature

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Patients' understanding of and responses to multiplex genetic susceptibility test results.

Kaphingst Kimberly A KA McBride Colleen M CM Wade Christopher C Alford Sharon Hensley SH Reid Robert R Larson Eric E Baxevanis Andreas D AD Brody Lawrence C LC

Genetics in medicine : official journal of the American College of Medical Genetics 20120701 7

<h4>Purpose</h4>Examination of patients' responses to direct-to-consumer genetic susceptibility tests is needed to inform clinical practice. This study examined patients' recall and interpretation of, and responses to, genetic susceptibility test results provided directly by mail.<h4>Methods</h4>This observational study had three prospective assessments (before testing, 10 days after receiving results, and 3 months later). Participants were 199 patients aged 25-40 years who received free genetic ...[more]

PMID: 22481132

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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.

Dataset Information

Patients' understanding of and responses to multiplex genetic susceptibility test results.

Publications

Patients' understanding of and responses to multiplex genetic susceptibility test results.

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