Abstract

To address challenges affecting preference studies of people within the Alzheimer’s disease (AD) spectrum regarding disease-modifying treatments: (1) selecting screening criteria and processes to identify adults within the AD spectrum who can accurately self-report and answer preference questions; (2) identifying meaningful treatment benefits; (3) developing a preference survey that is not too cognitively burdensome. In-depth interviews were conducted with 28 adults aged 50-85 years within the AD spectrum. Trained qualitative researchers conducted 14 interviews with concept elicitation to identify key preference factors and meaningful treatment benefits; cognitive debriefing to optimize instructions and questions for a preference survey; and a best-worst scaling exercise. Fourteen additional survey pretest interviews used “think aloud” to test and refine the screening criteria and process, descriptions of meaningful treatment benefits, and stated-preference questions. Considering both sets of interviews: Screening: Participants with mild dementia, and some with mild cognitive impairment (MCI) or subjective cognitive complaints (SCC), had difficulty following preference question instructions and many relied on interviewer support. Within-subject variation was observed in responses to repeated screening questions. Meaningful treatment benefits: Treatment benefit concepts that were meaningful to patients and different from clinical endpoints were identified and refined in the interviews. Survey design: Complex preference questions involving tradeoffs or ranking of multiple benefits and risks were cognitively burdensome, whereas most participants could answer questions involving pair-wise tradeoffs. Based on the two-stage interview process:•Screening criteria, including a validated cognitive assessment (Fillit et al., 2003), were selected to ensure that self-reported SCC or MCI are not in more advanced stages of the AD spectrum precluding informed consent or survey completion. A two-stage screening process should be used to ensure data are reliable.•Elicit patient input on identifying and describing meaningful treatment benefits.•Use simple preference questions and interviewer-assisted survey modes to maximize data quality.

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