Abstract

While the tremendous burden of Alzheimer's disease (AD) on patients, families and society is acknowledged, there is little quantitative evidence of the level of risk individuals are willing to accept for treatment benefits. In anticipation of AD disease modifying treatments, quantitative data on the preferences of older Americans without AD for potential treatment benefits and risks can assist healthcare professionals, policy makers and regulators in understanding the extent of perceived AD burden, establishing research priorities, and ultimately informing regulatory and healthcare treatment decisions. Identify individual characteristics that influence willingness to accept hypothetical risks in exchange for potential benefits of AD disease modifying treatments. A nationally representative panel of 2,146 US respondents ≥ 60 years of age (average 70 years), completed an Internet-based stated-choice questionnaire. Respondents chose between pairs of hypothetical treatment alternatives, including different, 7 year, AD disease-progression profiles and first year risk occurrence of two specific serious adverse events: death/permanent severe disability due to stroke or encephalopathy. The maximum acceptable risk (MAR) that respondents are willing to accept in exchange for treatment benefits was calculated for various clinical benefit levels. Results were stratified based on respondent characteristics and familiarity with AD. Higher MARs indicating greater risk acceptance, were observed for tradeoffs involving higher levels of clinical benefit. Mean MAR of death/disability due to stroke for treatments preventing disease progression beyond the mild state was 46.8% (40.3–54.3); that is, respondents were willing to accept an increase in the chance of death or disability of 46.8% for the benefit of preventing disease progression. Individual characteristics that had statistically higher MARs of death or disability due to stroke were found among younger versus older respondents (MAR 56.2%, 35.8%, respectively), more educated versus less educated (MAR 60.9%, 34.4%), and respondents familiar with AD versus less familiar (MAR 52.8%, 37.8%). Personal experience with AD and other responder characteristics were associated with higher risk acceptance. Respondents were willing to accept significant increases in the risk of death or disability in exchange for treatments that modify the course of AD. These data may help inform decisions regarding the value of disease modifying treatments for AD.

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