Document Type
Article
Publication Date
7-20-2017
Abstract
Purpose: Telephone disclosure of genetic test results can improve access to services. To date, studies of its impact have focused on return of Mendelian risk information, principally hereditary cancer syndromes.Methods: In a multisite trial of Alzheimer disease genetic risk disclosure, asymptomatic adults were randomized to receive test results in person or via telephone. Primary analyses examined patient outcomes 12 months after disclosure.Results: Data from 257 participants showed that telephone disclosure occurred 7.4 days sooner and was 30% shorter, on average, than in-person disclosure (both P < 0.001). Anxiety and depression scores were well below cutoffs for clinical concern across protocols. Comparing telephone and in-person disclosure protocols, 99% confidence intervals of mean differences were within noninferiority margins on scales assessing anxiety, depression, and test-related distress, but inconclusive about positive impact. No differences were observed on measures of recall and subjective impact. Subanalyses supported noninferiority on all outcomes among apolipoprotein E (APOE) I 4-negative participants. Subanalyses were inconclusive for APOE I 4-positive participants, although mean anxiety and depression scores were still well below cutoffs for clinical concern. Conclusion: Telephone disclosure of APOE results and risk for Alzheimer disease is generally safe and helps providers meet demands for services, even when results identify an increased risk for disease.
Keywords
Alzheimer disease, apoe, genetic testing, risk assessment, telephone
Language
English
Publication Title
Genetics in Medicine
Grant
AG013846
Rights
© 2018, The Author(s) This peer reviewed Accepted Manuscript version is published under a Creative Commons CC-BY-NC-ND licence (https://creativecommons.org/licenses/BY-NC-ND/4.0/), which permits non-commercial copying and redistribution of the material in any medium or format, provided the original work is not changed in any way and is properly cited.
Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-No Derivative Works 4.0 International License.
Recommended Citation
Christensen, K. D., Uhlmann, W. R., Roberts, J. S., Linnenbringer, E., Whitehouse, P. J., Royal, C. D., ... & REVEAL Study Group. (2018). A randomized controlled trial of disclosing genetic risk information for Alzheimer disease via telephone. Genetics in Medicine, 20(1), 132-141.
Manuscript Version
Accepted Manuscript