A prospective study of quality of life in amyotrophic lateral sclerosis patients

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Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disorder affecting the motor neurons controlling the voluntary muscles, leading to increased muscle weakness during disease progression, which often results in dependence on others to perform daily activities. The mean age of onset of ALS is about 65 years,1 but the disease can start as early as age 20, and most patients die due to respiratory insufficiency within 3‐5 years after start of symptoms. Most often, the disease starts with weakness in one arm or leg, that is limb onset, but the disease can also start with speech and/or swallowing difficulties, that is bulbar onset.2 Even though there is no known cure for ALS today, most symptoms can be treated effectively,3 and the care should have a holistic approach with the aim to help and support the patients to retain a good quality of life as possible.3
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.

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