Using the general public to estimate health-related quality-of-life in Alzheimer’s disease: development and validation of clinical vignettes

Alzheimer’s disease (AD) is a neurodegenerative disorder characterized by progressive declines in cognitive and functional abilities. Health-related quality-of-life (HRQoL) is important in AD because the disease has no cure and existing medications can only treat the symptoms of cognitive decline. Measuring HRQoL allows patients, caregivers, and other stakeholders (e.g., physicians, researchers, and policy makers) to evaluate the ‘humanistic element’ of AD therapies.

Our proposal is the first step in a research program to assess whether the general public can provide valid proxy HRQoL estimates in place of persons with AD. Currently, patients and caregivers provide these estimates; however, patients with moderate or severe AD may be cognitively incapable of estimating their own HRQoL and caregivers underestimate patient HRQoL when they act as proxies.

This study is sponsored by Canadian Institutes for Health Research. Drs. Mark Oremus and Feng Xie are co-principal investigators of this study.