A prospective study of quality of life in amyotrophic lateral sclerosis patients
Quality of life (QoL) may be difficult to define, but most people associate QoL with life satisfaction and well‐being. The World Health Organization (WHO) defines QoL as “individuals perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns”.6 The decline in physical function among patients with ALS does not seem to affect patient's overall QoL,7 and studies have shown that the individual's QoL does not change over time, even though his or her physical function declines.9 Instead, areas such as psychological and existential issues, social support and spirituality seem to be of importance for QoL.11.
Although several studies have been conducted with focus on quality of life and ALS, there is scarce knowledge about QoL among newly diagnosed ALS patients and during the disease progression. This study aims to describe individual QoL from diagnosis and over time in patients with ALS. We also want to evaluate whether QoL correlates with physical function and emotional well‐being.