Public Perceptions of Presymptomatic Testing for Alzheimer Disease

Abstract

Objective To explore, among online visitors to an Alzheimer’s disease (AD) website, the self-expressed desire for, envisioned reaction to, and basic understanding of presymptomatic AD-related genetic and biomarker tests. Patients and Methods Information about presymptomatic testing, and an online multiple choice format survey were posted from November 1, 2012 through June 20, 2013 on the AD Prevention Registry website (www.endALZnow.org). Results Of 4036 respondents, 80.8% wanted genetic testing if paid by insurance; 58.7% if it would cost them at least $100. 80.2% wanted biomarker testing. If found to be at high risk for AD, 90.5% endorsed that they would “pursue a healthier lifestyle,” but 11.6% endorsed “seriously consider suicide.” The implication of a positive genetic test was incorrectly understood by 13.1%, and 32.6% failed to view a positive biomarker test as evidence of either increased risk for or the presence of AD. Conclusion Despite efforts to increase public awareness of AD, our survey results suggest that greater education of the public is needed. Interested patients should probably undergo psychological screening to identify those at high risk of adverse psychological outcomes, and disclosure of presymptomatic test results should be anchored to tangible constructive action plans such as healthy lifestyle changes, long term care planning, and when available and appropriate, participation in research trials.

Psychological, behavioral and social effects of disclosing Alzheimer’s disease biomarkers to research participants: a systematic review

“…The qualitative studies included 60 and 79 participants [25, 26]. The populations of the quantitative studies varied between 76 and 343 participants, with the exception of one article describing two studies ( n  = 743) [27] and an online survey on hypothetical risk disclosure ( n  = 4036) [28]. In most studies, follow-up assessments were conducted after 6 weeks, 6 months and 12 months.…”

Lorazepam Challenge for Individuals at Varying Genetic Risk for Alzheimer Disease

“…More importantly, APOE4 carriers are not certain to develop dementia, nor are e4 noncarriers necessarily protected from it. Unfortunately, the public often misunderstand how to interpret the risk associated with APOE genotyping 35 , which may increase the chance for unintended consequences of gaining such information 36 . Therefore, we are not specifically recommending genotyping in the evaluation of a CN individual who experiences cognitive impairment brought on by benzodiazepines, but, depending on the clinical circumstances and confirmation of our results with a larger study, a standard evaluation, closer monitoring of cognition over time, avoidance of ongoing use of benzodiazepines and encouragement of healthy lifestyle changes may be appropriate.…”

Predictive Testing for Alzheimer’s Disease

“…As previously described 3 this survey was developed from a 2 part interview with members of the Arizona APOE cohort to get a sense of what features of presymptomatic AD testing seemed most relevant to them (for example, whether they felt any form of predictive testing for AD was appropriate, and how they might handle such information if it was disclosed to them). The final questionnaire comprised of yes/no and multiple choice questions addressing demographics, genetic testing, biomarker testing, and possible reactions to such information was then mailed to the remaining cognitively normal members of the cohort.…”

“…Further, participants had extensive education, counseling, and followup, all steps that characterize a best practice but which are unlikely to occur outside of the protective walls of a research trial. In an effort to explore the perspectives of unscreened and unsheltered individuals who are likely to seek presymptomatic testing for AD we administered a questionnaire through an online website and found that nearly 12% of more than 4000 respondents (who had not undergone genetic testing), when asked how they might react if found to be a “high risk” for AD endorsed “seriously consider suicide” 3 . With the advent of presymptomatic clinical trials, recruitment strategies include mass screening of individuals harboring genetic or biomarker evidence of high risk for Alzheimer’s disease (AD) 4–6 .…”