AbstractBackgroundPersonal utility is commonly cited as a rationale for Alzheimer’s disease (AD) biomarker testing. Yet, limited reports document how the value of knowing one’s AD biomarker status manifests in cognitively symptomatic patients. Emerging literature suggests two potential dimensions to the construct: a) inherent value, or “knowledge for the sake of knowledge,” and b) value of knowing as a basis for action. We describe actions taken by patients following amyloid PET results disclosure with the goal of elucidating the value of knowing AD biomarker status in cognitively symptomatic populations.MethodWe analyzed longitudinal health behavior assessments completed by patients with mild cognitive impairment who learned of being amyloid positive (n = 12), negative (n = 22), or assigned to a comparison group (n = 37). Patients were 92% non‐Hispanic white, 59% male, 73±8.61 years old with 16.25±2.49 years of education. Qualitative interviews supplemented scan group participants’ data. Both questionnaires and qualitative interviews focused on activities newly adopted to promote cognitive health or plan ahead.ResultOver 12 months of follow‐up, all participants reported at least one behavior change from baseline. Amyloid positive patients reported the most behavior changes (mean = 4.67/14±1.83) while amyloid negative patients reported the fewest (mean = 3.72±1.58). Across groups, no significant differences were observed in changes to: lifestyle, vitamin/supplement use, stress reduction activities, cognitive stimulation, and advance directive completion. Amyloid negative participants were significantly less likely than controls to consider long‐term care insurance (63.6% vs. 89.2%; P = .025), and to endorse changes classified as “other” (36.4% vs. 64.9%; P = 0.037). After adjusting for education level, gender, and MMSE, logistic regression showed that amyloid negative patients were 74% less likely than controls to report “other” changes (OR = 0.26, 95% CI [0.08, 0.85], P = 0.025), and 78% less likely to consider long‐term care insurance (OR = 0.22, 95% CI [0.06, 0.86], P = 0.03). Qualitative analysis yielded insight into “other” activities, including changes in employment, driving, and residential status, and engagement in other non‐medical activities (pursuing bucket list activities and mending strained relationships), particularly among amyloid positive patients.ConclusionValue of knowing one’s amyloid status may differ by scan result and encompass a wide range of actions to enhance not only cognition but quality of life.
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