BACKGROUND: As Alzheimer’s disease (AD) treatment research shifts to targeting earlystage patients with mild symptoms, it is important to understand how these patients describe their symptoms relative to domains within cognitive assessments, and whether they can selfreport on treatment preferences. The purpose of this qualitative research was to: (1) identify terminology participants use to describe cognitive concerns and slowing cognitive decline and (2) assess the feasibility of conducting a quantitative discrete choice experiment (DCE) survey for potential use to inform regulatory decisionmaking.
METHODS: Potential participants were recruited and screened by 2 qualitative research firms in the US. Eligible participants (N=30) reported discussing memory concerns with their doctor and receiving either a relevant diagnosis (mild cognitive impairment, dementia, AD) or a prescription medication discussion for their memory concerns. Additional eligibility criteria included living independently, having no impairment in basic activities of daily living, and no diagnosis of nonAD dementia. Qualitative interviews were conducted following a semistructured discussion guide that probed into current memory concerns, attributes for slowing cognitive decline, and preference tradeoff exercises on willingness to accept a treatment with adverse events in exchange for the slowing of cognitive decline. The primary goals were assessed using a narrative summary of the interviews.
RESULTS: Participants displayed awareness of their symptoms, reporting concerns such as more difficulty remembering new information, and trouble finding the right words. Many participants reported emotional impacts, such as frustration and fear, from their cognitive problems. Generally, participants defined cognitive decline as worsening in cognitive functioning, and they valued slowing decline, which meant avoiding getting worse sooner. Responses to treatment preference questions suggested they understood tradeoffs and balanced treatment benefits against risks using a common format for DCE surveys. Decisions as to whether to take a medicine varied across respondents in ways similar to patients with other diseases.
CONCLUSIONS: Respondents with selfreported mild cognitive concerns provided meaningful descriptions of their cognitive problems. Responses to treatment preference questions suggested a quantitative DCE survey to compare benefits against risks of a hypothetical treatment for memory problems, potentially to inform regulatory decisionmaking, would be feasible in this patient population.
