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Quality of life in ALS: What is it and how do we measure it? 

Quality of life in ALS: What is it and how do we measure it?
Chapter:
Quality of life in ALS: What is it and how do we measure it?
Author(s):

Vincenzo Zaccheo

and Zachary Simmons

DOI:
10.1093/med/9780198757726.003.0002
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date: 22 February 2020

Because of the limited range of treatments available for ALS, care is centred on maximizing quality of life (QoL). There is no universal definition of QoL, and no single instrument of choice with which to measure it. Health-related QoL (HRQOL) refers to physical and mental health status, whereas global QoL incorporates socioeconomic and existential factors outside the medical realm. Instruments for measuring may be generic or disease-specific. With the exception of bulbar function, QoL in patients with ALS is largely independent of physical strength and function, but is related to psychological and existential factors, and possibly to social supports, religiosity, and multidisciplinary clinic care. The ‘response shift’ phenomenon generally results in stable QoL over time in those with ALS. The choice of a QoL instrument depends on the goals of the user, and depends on whether it is being used for individual clinical care, measuring research outcomes, or assessing groups of individuals.

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