Can the general public use vignettes to discriminate between Alzheimer’s disease health states?

BACKGROUND: Valid estimates of health-related quality-of-life (HRQoL) are often difficult to obtain from persons with Alzheimer’s disease (AD) and family caregiver proxies. To help assess whether the general public can serve as an alternate source of proxy HRQoL estimates in AD, we examined whether the general public can use vignettes to discriminate between AD health states. METHODS: We administered a telephone survey to randomly recruited participants from the general public who were aged 18 years or older. Interviewers read vignettes describing the mild, moderate, and severe AD health states to the participants, who answered the EQ-5D-5L and Quality of Life-Alzheimer’s Disease (QoL-AD) scales as if they had AD based on the vignette descriptions. Participants also answered the EQ-5D-5L for their current health states. We converted EQ-5D-5L responses into health utility scores using Canadian preference weights. We employed the Wilcoxon signed rank test to examine whether mean health utility scores and mean QoL-AD scores differed between health states. We used Pearson’s r to assess correlations between health utility and QoL-AD scores. RESULTS: Forty-eight participants (median age = 53 years; 25 female) completed the telephone interview; health utility and QoL-AD scores decreased as AD severity increased (p <0.0001). Mean health utility scores were 0.65 (mild), 0.51 (moderate), and 0.25 (severe). Mean QoL-AD scores were 26.7 (mild), 23.0 (moderate), and 17.4 (severe). The correlations between health utility and QoL-AD scores were moderate to strong (r ≥ 0.62). CONCLUSIONS: Using the vignettes, the general public provided HRQoL estimates that discriminated between the three AD health states. This finding suggests the general public may be a promising source of proxy HRQoL estimates in place of persons with AD. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12877-016-0207-4) contains supplementary material, which is available to authorized users.