This study explored differences in perspectives on quality of life (QOL) between people affected by amyotrophic lateral sclerosis (ALS) and their caregivers. QOL is often thought of as related to physical limitations, without consideration of other factors (e.g., cognitive, emotional) that may be stronger predictors of QOL in people with long-term degenerative diseases. Because QOL is complex and influenced by multiple factors, people with ALS and their caregivers may have different perspectives on what constitutes QOL. This study investigated potential discrepancies in QOL perspectives between people with ALS and their caregivers. Thirty dyads from the Augusta University Health ALS Clinic completed a measure of QOL, and we compared the results and identified patterns. The most prominent finding was that members of the dyads misunderstood the mental experiences of one another.

Date Presented 3/31/2017 This study compared quality of life (QOL) perspectives between persons with amyotrophic lateral sclerosis (PALS) and their caregivers (CG). Results revealed QOL perspective differences between PALS and CG, especially for mental domains; awareness of differences is vital to providing holistic care. Primary Author and Speaker: Stephanie Johnson Additional Authors and Speakers: Katie Faulkner, Bryant Alonso, Haley Jones, Britton Monroe, Leigh Lehman, Pamalyn Kearney