Measuring Quality of Life in Patients with ALS: A Pilot Study

Pennsylvania State University

Goal:
This study examined the relationship of physical function to QOL and tested the utility of a number of instruments to measure QOL

Aims:

• Determine the relationship between physical functioning and QOL.
• Compare several instruments for assessment of QOL to determine which ones best reflect patients' own rating of their QOL.
• Determine whether spirituality/religious factors are associated with QOL.
• Assess ability of various QOL tools to track changes in QOL over time and
• Assess longitudinal relationships between QOL and physical function and strength

Status:
This study is completed. Results have been presented in the medical literature and at ALS conferences. The most important finding from this study confirms that quality of life for people with ALS does not correlate with measures of strength and function as previously thought, but depends on psychological and existential factors. In fact, quality of life for people with ALS appears to be independent of physical function. Spiritual and psychological factors, however, do play a major role. Results from this study will help improve how clinicians provide care and how they evaluate the quality-of-life effects of various therapies on people with ALS.