P3‐402: A randomized trial examining recall and distress after telephone versus in‐person disclosure of genetic risk information about Alzheimer's disease: the REVEAL study
Year: 2011
Type: article
Study designs: Randomized Controlled Trial, Clinical Trial
Abstract: Genetic susceptibility testing of asymptomatic individuals for risk of Alzheimer's disease using Apolipoprotein E (APOE) may become an important part of determining future prevention or treatment strategies, but traditional in-person protocols for disclosing test results are resource-and time-intensive. The REVEAL Study is a series of NIH-funded, multi-center clinical trials examining the impact of APOE genetic testing for Alzheimer's disease (AD) risk. In this study, we compared telephone disclosure versus in-person disclosure on measures of information recall and distress. APOE genotypes, and AD risk estimates based on genotype, family history, ethnicity and gender (risk range: 6%-70%; mean: 29%) were disclosed to 257 healthy adults. Participants were randomized to receive results from a genetic counselor via telephone versus in person. Recall was assessed at follow-up by asking participants to report (a) their genotype, (b) whether or not they carried risk-increasing alleles, (c) their lifetime AD risk estimates and (d) their remaining AD risk estimates. Test-specific distress was also measured using the Impact of Events Scale (IES). Six weeks after disclosure, most participants correctly recalled their genotype (73%), carrier status for the risk-increasing form of APOE (87%), lifetime AD risk estimate within 5 points (85%) and remaining AD risk estimate within 5 points (90%). Differences by disclosure method were not evident on any of those four items (χ=.98-2.45, p=.12-.32). IES scores six weeks after disclosure averaged well below clinical cutoffs for concern (mean: 3.9) and did not differ by disclosure method after controlling for demographic and study-related factors (δ=.87, p=.27). Telephone disclosure of AD genetic susceptibility test results is as effective as in-person disclosure, at least on outcomes of information recall and distress. Such protocols will be essential to implement given the limited number of specialists trained to communicate genetic risk information and the increasing visibility and utility of genetic susceptibility testing. Further analyses are underway to assess the impact of telephone disclosure on provider burden, patient satisfaction, and behavioral responses.
Source: Alzheimer s & Dementia
Language: English
Subfield: Psychiatry and Mental health
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W2075889560