Abstract
AimsTo develop clinical descriptions (vignettes) of life with Alzheimer’s disease (AD), we conducted focus groups of persons with AD (n = 14), family caregivers of persons with AD (n = 20), and clinicians who see persons with AD in their practices (n = 5).MethodsGroup participants read existing descriptions of AD and commented on the realism and comprehensibility of the descriptions. We used thematic framework analysis to code the comments into themes and develop three new vignettes to describe mild, moderate, and severe AD.ResultsThemes included the types of symptoms to mention in the new vignettes, plus the manner in which the vignettes should be written. Since the vignette descriptions were based on focus group participants’ first-hand knowledge of AD, the descriptions can be said to demonstrate content validity.ConclusionMembers of the general public can read the vignettes and estimate their health-related quality-of-life (HRQoL) as if they had AD based on the vignette descriptions. This is especially important for economic evaluations of new AD medications, which require HRQoL to be assessed in a manner that persons with AD often find difficult to undertake. The vignettes will allow the general public to serve as a proxy and provide HRQoL estimates in place of persons with AD.
Highlights
Alzheimer’s disease (AD) is a neurodegenerative disorder that is characterized by progressive declines in cognitive and functional abilities
Evidence suggests many Persons with AD (PwAD) experience difficulties estimating their own health-related quality-of-life (HRQoL) [5,6] on instruments such as the EQ-5D-5L [7], which provide the type of data needed for economic evaluations
When family caregivers are used as proxies to estimate the HRQoL of PwAD, they often provide underestimates because they integrate their own life experiences into the proxy assessments [8,9,10,11,12,13,14]
Summary
Alzheimer’s disease (AD) is a neurodegenerative disorder that is characterized by progressive declines in cognitive and functional abilities. Persons with AD (PwAD) may experience disorientation or depression Over time, these persons lose the ability to perform instrumental activities of daily living, including preparing meals, managing money, shopping, performing housework, and using a telephone. Valid HRQoL estimates are needed to conduct economic evaluations of new AD treatments. These evaluations are becoming ever more important components of public health insurance reimbursement decisions in AD [3,4]. We are embarking upon a research program to examine whether the general public can provide valid proxy health-related quality-of-life (HRQoL) estimates in place of PwAD and their caregivers. The potential role of the general public in this respect remains largely unexplored
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