title: The role of disease perceptions and results sharing in psychological adaptation after genetic susceptibility testing: the REVEAL Study.
abstract: This study evaluates the extent to which psychological adaptation (validated measures of depressive symptoms, anxiety, and test-specific distress) after genetic susceptibility testing is influenced by changes in beliefs about Alzheimer's disease (AD) and sharing of test results with others. Adult children of AD patients (N=269) from a randomized clinical trial involving genetic testing for apolipoprotein E (APOE) provided information before, as well as 6 weeks and 12 months after results disclosure. The levels of adaptation varied highly among participants at 12-month assessment. Participants who learned that they were ε4 negative (lower risk) had a reduction in perceived risk and concern about developing AD compared with those who learned that they were ε4 positive. Those who received results through an extended educational protocol (three in-person visits) had a larger decline in AD concern than those in a condensed protocol (educational brochure and two in-person visits). Increase in AD concern 6 weeks after disclosure was associated with increase in depression scores (b=0.20, P<0.01) and anxiety levels (b=0.20, P<0.01), and higher distress associated with AD genetic testing (b=0.18, P=0.02) 1 year after testing. Increase in perceived risk (b=0.16, P=0.04) was also associated with higher AD genetic testing distress. Sharing the test results with health professionals and friends (but not family) was associated with decrease in depression (b=-0.11, P=0.05) and anxiety levels (b=-0.16, P<0.01), respectively after a year. Enhancing discussion with regard to risks and concerns about AD during pretesting counseling and obtaining support through sharing the results after testing may help facilitate test recipients' long-term psychological adaptation.
authors.affiliation: Social and Behavioral Research Branch, National Human Genome Research Institute, Bethesda, MD 20892-2073, USA. ashidas@mail.nih.gov
authors.forename: Sato
authors.initials: S
authors.lastname: Ashida
authors.forename: Laura M
authors.initials: LM
authors.lastname: Koehly
authors.forename: J Scott
authors.initials: JS
authors.lastname: Roberts
authors.forename: Clara A
authors.initials: CA
authors.lastname: Chen
authors.forename: Susan
authors.initials: S
authors.lastname: Hiraki
authors.forename: Robert C
authors.initials: RC
authors.lastname: Green
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000544:Alzheimer Disease / Q000235:genetics / Q000523:psychology; D005260:Female; D005787:Gene Frequency / Q000235:genetics; D020022:Genetic Predisposition to Disease / Q000523:psychology*; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D010465:Perception; D016032:Randomized Controlled Trials as Topic; D012044:Regression Analysis; D012307:Risk Factors